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Christine
11-11-2006, 12:31 PM
I would like to start a thyroid thread on this board. So many of us here seem to have various thyroid issues that are often coming up on the Community Board. It would be great to have one thread for it that can be easily located and a person can scroll through past posts (kind of like the Breast Cancer GAGTWA thread).

Anyway, I'll start. I was diagnosed with Thyroid Cancer 11 years ago. I just completed a follow up scan yesterday to make sure I have no recurrences. I have no results yet because my doctor is a jerk!! Anyway, I consider myself an "armchair expert" on thyroid cancer so if you ever have any questions ask away. I have also spent time doing both the HYPO and HYPERthyroid phases so I know how that can make you feel.

Who's next??

liznboys
11-11-2006, 01:26 PM
Thanks for the thread Christine. Hang in there awaiting your results.

I'm hyperthyroid. Looking back I think I was for awhile, but I was officially diagnosed in 2004 after the birth of my 3rd son. The main symptom I had/have which led to the diagnosis are heart palpitations which come and go. I have a nodule which bothers me sometimes. I had an ultrasound done in May 2005 and nothing came up as needing further tests. I have not taken any meds related to this thus far. I'm currently nursing my youngest and my goal is to make it until next summer nursing him and not taking any meds. Right now I am "ok". My next check-up is in January, so we'll see where I stand as of then.

Christine
11-11-2006, 02:10 PM
Hi Liz!

I hate being hyperthyroid. I know many/most people complain of HYPOthyroidsim, but I find being hyper to be much more intolerable. I've been severely hypo (TSH well over 100) and mildly hyper and it's the hyper side that gives me the most discomfort. I hate the racing heart and palpitations.

Mackey Mouse
11-11-2006, 02:29 PM
Christine, thanks for starting this thread and this is exactly what I wanted this board to be for.

Believe it or not, my daughter had papillary carcinoma of the thryoid, I think it was 8 years ago... had a throidectomy and radioactive iodine treatment and lives her life with levoxil...hope I spelled that right.. She does have a tricky lymph node that they are watching, but so far so good. As her Mom, I consider myself a bit of an expert too, but I do not know what it feels like to have the heart palpitations, the dry skin, hair loss first hand......

I hear you about your doctor....sometimes I am so shocked how they do not get back with results for tests.. I know we are not their only patients, but when you are waiting for a result, like you are, to see if there is a reoccurence, it is so frustrating. Her doctor wrote a wrong prescription one time, too low, sent her into such a state with headaches, leg aches, you know what I am talking about. She said she was sorry though so I guess it was ok....NOT. Immediately wrote a new prescription, did not even make her come in for blood work..

Hugs and hang in there, and if you do not hear anything from the doctor, I would start my phone calling campaign...

rie'smom
11-11-2006, 02:55 PM
I'm hypothyroid and I agree about the doctors.:( I have to call each time to get my results-2 times I was really out of whack on the numbers. What happens if you get really ill? It was really scary-I was very close to the numbers for a myexdema coma.
I changed doctors because of this and I am happy with the new doc.

lyeag
11-11-2006, 04:30 PM
Hi guys, I am sure most of you saw my thread. Am I crazy, or is hair thinning something that is caused by this???? I have really thick hair, or used to over the summer, now I am finding it everywhere.

My heart was really pounding for a few weeks, now not so much, I just feel jittery. I have trouble sleeping and I have lost around 12 pounds.

I just want this weekend to get over with so I can call my dr.

Mackey Mouse
11-11-2006, 06:18 PM
I am not a doctor here but to me, your symptoms could be thryoid related....or sometime stress can do it as well..

Call your doctor, get a blood test and get some answers.. Hugs and try not to worry too much, help is out there for you.

lyeag
11-11-2006, 08:02 PM
I am not a doctor here but to me, your symptoms could be thryoid related....or sometime stress can do it as well..

Call your doctor, get a blood test and get some answers.. Hugs and try not to worry too much, help is out there for you.
I posted about my throid levels on the CB TSH is .03 T3 and T4 are still in the normal range. I have been tested twice just to be sure and now I am waiting to hear back from my doctor.

Fan2CSkr
11-11-2006, 11:52 PM
So thankful for this thread! I have been dealing with hyperthyroidism for over three years. Could be longer but thats when I had enough of the symptoms and got a dx. Its been a tough road trying to become euthyroid and I was almost there more than once. Had major surgery last year and nothing but thyroid issues since. I am having a total thyroidectomy next month. Hypo sucks (been there after too high a level of tapazole) and I am so nervous that after surgery I wont regulate. I do not want to gain any more weight not to mention the host of other problems in connection to that.

Losing hair can happen hyper/hypo. I have that too.
Christine, sorry your doc is a jerk and you are waiting. I hope you hear soon and that all is still OK. Thanks again for starting this. :wave2:

Blueeyes101817
11-12-2006, 12:16 AM
I have been having thyroid problems since i was 8 years old..i am now 22..

When I was 8, i had a tumor (benign) and half of my thyroid removed..When i was 15, a few more tumors grew back and they removed them and the other half of my thyroid--They then put me on Synthroid. When I was 16, I had scar tissue revision..

Since my surgeries, especially the last 2, my thyroid levels go crazy--Every 6 months or so I have to get my levels changed..i go from being hypo to hyper all of the time.. After this semester, I will be getting some more tests done to see if there are any more tumors in there..i have been having a hard time holding my neck up again and my necks been really sore and ive been having difficulty swallowing...

Its nice to see this thread!

Christine
11-12-2006, 05:45 AM
I have been having thyroid problems since i was 8 years old..i am now 22..

When I was 8, i had a tumor (benign) and half of my thyroid removed..When i was 15, a few more tumors grew back and they removed them and the other half of my thyroid--They then put me on Synthroid. When I was 16, I had scar tissue revision..

Since my surgeries, especially the last 2, my thyroid levels go crazy--Every 6 months or so I have to get my levels changed..i go from being hypo to hyper all of the time.. After this semester, I will be getting some more tests done to see if there are any more tumors in there..i have been having a hard time holding my neck up again and my necks been really sore and ive been having difficulty swallowing...

Its nice to see this thread!

Are all you tumors malignant or benign? And if you had your entire thyroid removed, why would tumors continue to grow back? And if they did continue to grow back, wouldn't radioactive iodine treatment be the best thing for you?

Sorry for all the questions, just pondering things here... :teeth:

Mackey Mouse
11-12-2006, 05:50 AM
HI, hugs all around..

I know regulating is so difficult, you think you finally have it and then they tweak your meds again as your numbers are too high or too low and you have to start all over again..

Seems this one would be easy for doctors but it is not.......yikes.

kevinsmum
11-12-2006, 09:22 AM
I have benn diagnosed with BPPV (vertigo),most people think this just affects you when going up heights but this isnt the case ,it affects your every day life ;u feel dizzy ,cant walk straight,feel sick and generally feel miserable,after reading some of your posts i feel guilty writing this as some of you hare having a much worse time than me.I have managed to keep working and been in my job for 10 years but i recently left to start a new job which would be better financailly and better hours but after 3 days i had a vertigo attack and they suggested it would be better i left so now i have no job and 2 young kids and am feeling sorry for myself as i said before i should feel lucky that im not as ill as some people but i just wish now that i had stayed in the job i was in ,still it was probaly fate and something better is round the corner for me ,sorry for moaning on

kevinsmum
11-12-2006, 09:23 AM
sorry i meant to start a new thread ,my mind is not my own at the moment sorry

StephMK
11-12-2006, 06:27 PM
Hey, great to see this thread. I've been hypo since my DD6, went on meds after DS4. My dad & GF are also. I'm now on the .88 synthroid which is my lowest dose ever & feeling the closest to normal finally! I have a lot of energy problems & some docs have just chalked it up to being a mom of 3. It's so hard to know what symptoms are related to thyroid & what to just life, stress, etc. Sugar is my stress reliever of choice but the cravings were much worse when I flipped over to hypo until my meds were lowered. The cravings are getting worse again & hair loss but so are my stress levels.

I finally found a great doc & sadly, we're moving away. If anyone wants a referral to a doc in NoVA, let me know! She actually takes the time to ask how I'm doing & listens to the responses, really looks at me & notices changes from visit to visit over a period of months.


lyeag - your symptoms sound like ones I've had - definitely worth checking out.

kathleena
11-12-2006, 07:51 PM
Hi guys, I am sure most of you saw my thread. Am I crazy, or is hair thinning something that is caused by this???? I have really thick hair, or used to over the summer, now I am finding it everywhere.

My heart was really pounding for a few weeks, now not so much, I just feel jittery. I have trouble sleeping and I have lost around 12 pounds.

I just want this weekend to get over with so I can call my dr.

Sounds just like hyper. How are your muscles feeling?

When I was hyper - I didn't lose weight because my appetite was so huge, my eyebrows thinned and my hair did some, the palpitations were awful - they would just start up for no reason, I slept about 5 hrs a night, and the muscles were very weak - I could hardly climb stairs the thigh muscles hurt so much.

Oh and so irritable.

kathleena
11-12-2006, 07:57 PM
I have Graves disease.

I was hypo for years - slighly only. No doc would treat me. I kept dr hopping, saying I had thyroid problem. No one would test the antibodies. Finally went hypo enough for someone to start me on synthroid. Two years later I went hyper.

I have TSI antibodies (TSH receptor stimulating) and also I have TSH receptor blocking antibodies. So when the TSI is high, I am hyper and when the other is high, I am hypo.

Hyper is MUCH worse than hypo in my opinion.

I opted not to take the RAI treatment and took anti-thyroid drugs instead. On them for 18 months, I am now 15 months in remission. I was just dx with slightly hypo so I'm back on synthroid.

I have a wonderful doc who is willing to treat me with just a little T4 to keep TSH around 1.0-1.5.

Also I have thyroid eye disease, although that is also inactive.

So - anyone wondering about
Antibodies
Anti-thyroid drug option vs RAI
Graves Disease
Thyroid Eye Disease

Please count on me for support.

kathleena
11-12-2006, 08:02 PM
Oh I meant to add, my primary care docs office sends me a copy of my lab each time.

I just had the antibodies tested and the doc called me herself as the two were both a little high.

I love the office and my doc.

The endo I saw was great too. They didn't mail the results, but they always called me.

kathleena
11-12-2006, 08:04 PM
I posted about my throid levels on the CB TSH is .03 T3 and T4 are still in the normal range. I have been tested twice just to be sure and now I am waiting to hear back from my doctor.

Oh ya, that's hyper. Or at least getting there.

My TSH was <.01, T4 was normal and T3 was just above normal. Your TSH will drop first, but the others will follow.

Did they test Free T4 and Free T3 or total? Make sure they are doing free.

Christine
11-13-2006, 07:14 AM
I finally found a great doc & sadly, we're moving away. If anyone wants a referral to a doc in NoVA, let me know! She actually takes the time to ask how I'm doing & listens to the responses, really looks at me & notices changes from visit to visit over a period of months.


lyeag - your symptoms sound like ones I've had - definitely worth checking out.

StephMK--

I would like the NoVA reference. I am endo shopping!!

Mackey Mouse
11-13-2006, 07:22 AM
Finding the right Endocrinologist is so key to keeping yourself healthy with thyroid issues...

Sometimes, I hate to say this, but you have to take the one that does the less damage... I know that is a terrible thing to say, but with my daughter, I have not been wowed on Endo's....we actually had the head of the department as Mass General and he was not good with her, I have never seen anything like it.. She likes the one she has now at Boston Medical.....but she makes mistakes too.... Yikes.. Good luck!!!!!!!

hiwaygal
11-13-2006, 07:34 AM
Good Morning fellow thyroid patients!!! :wave:

I am glad this thread is here!

I am by no means an expert...but I was diagnosed hypo in December 2003. I was complaining of Carpal Tunnel Syndrome, and my doc decided to run tests. Turns out my TSH was well over 100!!!! No wonder I was feelin' kinda :crazy: .

My hypo is under control now (although we are still getting other problems worked out...I just found out I have sleep apnea :rolleyes: ) and I'm not quite as crazy as I was!

Anyway, I haven't had a chance to read through the posts here yet...but I wanted to pop in and send :grouphug: :grouphug: :grouphug: to everyone here!

I know we can help each other out!!

lyeag
11-13-2006, 09:00 AM
Oh ya, that's hyper. Or at least getting there.

My TSH was <.01, T4 was normal and T3 was just above normal. Your TSH will drop first, but the others will follow.

Did they test Free T4 and Free T3 or total? Make sure they are doing free.

The tested Free T4 and Free T3 . As for my muscles, maybe slightly weaker, not any sort of huge issues.

Fan2CSkr
11-13-2006, 12:36 PM
The tested Free T4 and Free T3 . As for my muscles, maybe slightly weaker, not any sort of huge issues.


The muscle thing kinda creeps up after being hyper for a bit. It wasnt a symptom of mine initally but sure is now.

lyeag
11-13-2006, 02:18 PM
I called my dr. They are waiting for one lab to come back. Something called Thyroid Auto AB It says Serum next to it. Anyone know what that is????

Christine
11-13-2006, 03:30 PM
I called my dr. They are waiting for one lab to come back. Something called Thyroid Auto AB It says Serum next to it. Anyone know what that is????

I believe that is an antibody test. It is probably for diagnosing Graves' Disease. Antibody tests take a bit longer than regular blood tests.

kathleena
11-13-2006, 04:10 PM
I called my dr. They are waiting for one lab to come back. Something called Thyroid Auto AB It says Serum next to it. Anyone know what that is????

Yes, that is a test for the serum (blood) levels of thyroid antibodies. There are three types of thyroid autoantibodies that cause hyper: These are thyroperoxidase (TPO), thyroglobulin (Tg) and the TSHreceptor (TRAb). each one works differently.

I have the last one - of which there are three - blocking, binding, stimulating. I have stimulating and blocking - so I get both hyper and hypo.

How are your eyes? Are they watering at all, or itchy. Watering eyes means they are dry. Some of the antibodies can cause thyroid eye disease. It's not the hyper that causes it - as some think - it is the antibody.

lyeag
11-13-2006, 05:21 PM
MY eyes are tired and feel kind of sticky. Not dry, not teary, there isn't any discharge. Just sort of like it takes extra effort to blink. Does that makes sense at all?????

kathleena
11-14-2006, 07:52 PM
MY eyes are tired and feel kind of sticky. Not dry, not teary, there isn't any discharge. Just sort of like it takes extra effort to blink. Does that makes sense at all?????

Yes that is probably good. Hopfully you won't have any eye involvement. It will depend on which antibody you have (if any, hyper can be caused by other things.....)

Two months before I was dx, TSH was <.02, T4 and t3 were normal, my eyes were running like crazy - I had to keep a tissue with me at all times and dab my eyes.

Keep us posted on your labs.

lyeag
11-14-2006, 09:11 PM
Yes that is probably good. Hopfully you won't have any eye involvement. It will depend on which antibody you have (if any, hyper can be caused by other things.....)

Two months before I was dx, TSH was <.02, T4 and t3 were normal, my eyes were running like crazy - I had to keep a tissue with me at all times and dab my eyes.

Keep us posted on your labs.
Nothing on the labs today. I really hope I will find out what is going on tomorrow.

I want to thank you guys for helping me through this. I don't have much family left, and it is great to have you guys to hear what you went through.
It is nice to know I have a place to come to.

Fan2CSkr
11-14-2006, 11:22 PM
MY eyes are tired and feel kind of sticky. Not dry, not teary, there isn't any discharge. Just sort of like it takes extra effort to blink. Does that makes sense at all?????


I had/have annoying eye disturbances from the beginning but my symptoms have changed with treatment. At first my eyes teared al the time and felt as though I had sand in them. I also had an odd stare. I blinked less frequently than normal and felt as if my lids did not want to close or stay closed.

So, yes, the blinking makes perfect sense! Overall how have your palpitations been since the weekend? Are you feeling better? They havent prescribed medication yet right?

Some other common Graves symptoms:
Weight Loss
Increased Appetite
Nervousness
Restlessness
Heat Intolerance
Fatigue
Eye Irritation
Lessened Menstral Cycle
Smooth soft babylike skin
Hair changes
Tremors (especially when holding hands out straight in front of you)
Muscle Weakness
Increased Sweating

There are others but these are pretty common. Stay on top of your docs and get the answers you need.

kathleena,
I am enjoying and learning from reading your posts! Thank you for sharing.

lyeag
11-15-2006, 07:00 AM
I had/have annoying eye disturbances from the beginning but my symptoms have changed with treatment. At first my eyes teared al the time and felt as though I had sand in them. I also had an odd stare. I blinked less frequently than normal and felt as if my lids did not want to close or stay closed.

So, yes, the blinking makes perfect sense! Overall how have your palpitations been since the weekend? Are you feeling better? They havent prescribed medication yet right?

Some other common Graves symptoms:
Weight Loss
Increased Appetite
Nervousness
Restlessness
Heat Intolerance
Fatigue
Eye Irritation
Lessened Menstral Cycle
Smooth soft babylike skin
Hair changes
Tremors (especially when holding hands out straight in front of you)
Muscle Weakness
Increased Sweating

There are others but these are pretty common. Stay on top of your docs and get the answers you need.

kathleena,
I am enjoying and learning from reading your posts! Thank you for sharing.


No, I haven't been given anything from the dr yet. My cycle was pretty light the last few times, and I get tired much more easily. It reminds of those days during the first trimester of being pregnant. Exhausted by 7 pm. I usually run circles around everyone else. Up at 0600 and don't fall asleep unitl 2300 or so.

My heart hasn't been too bad. I do notice that in the mornings I feel great, no problems, but around 1300, it creeps up on me. In the morning my pulse, even with my coffee, can stay around75, but in the afternoon it pushes near 100.

I do have the fine tremors, anxiety, and I do get warm pretty fast. I have noticed that my temp is always around 99, when it used to always be low.

Send some pixie dust that I hear from them today!

Fan2CSkr
11-19-2006, 05:04 PM
lyeag, I was thinking about you and wondering if they contacted you about your tests. Are you feeling better? I hope so. :)

lyeag
11-19-2006, 06:31 PM
lyeag, I was thinking about you and wondering if they contacted you about your tests. Are you feeling better? I hope so. :)
Arghhhh. I haven't heard yet. The labs were in on Thurs, but dr wasn't. Friday they called, but I was subbing, and I called and called and CALLED, but coudn't get through to the nurse. Gotta love those military hospitals. I left messages, tried to call to be told the nurse wasn't available, blah, blah, blah. Tomorrow I go to the cardiologist and should find out about the labs.

The really funny thing is, my heart isn't pounding so much. Maybe I am getting used to it?????????????????????? I am not as tired and that for sure is a good thing.


Thanks for thinking of me!

lyeag
11-20-2006, 08:56 AM
Well, I have a little info. I spoke to the nurse, she didn't tell me anything specific about the lab results. I was told to schedule an ultrasound and have the labs run again in three weeks. I have to wait until tomorrow to schedule so they can put through the paperwork at a local hospital. So it looks like nothing will be resolved before Disney. Three weeks puts me at the 11th, and we are leaving the morning of th 16th. I guess it really doesn't matter, with the holidays, it will be difficult to be seen unless it is an emergency.

I will post this afternoon after I get home from the cardiologist. Gee, so much fun, and I am only 37. :rolleyes:

Blueeyes101817
11-20-2006, 10:03 AM
Are all you tumors malignant or benign? And if you had your entire thyroid removed, why would tumors continue to grow back? And if they did continue to grow back, wouldn't radioactive iodine treatment be the best thing for you?

Sorry for all the questions, just pondering things here... :teeth:

Sorry it took so long for me to answer--i was on vacation.

My tumors were benign...APparently, the tumors can continue to grow back , but i have no clue how!!
The radioactive iodine treatment is what the doctor mentioned, but we are waiting to get the next set of tests

Mackey Mouse
11-20-2006, 11:42 AM
Hugs to you......Keep us informed on how it goes at the cardiologist today and on all future tests....My daughter was 23 when she battle papillary carcinoma of the thyroid.....but she has been clean for almost 10 years after her thyroidectomy......

Hang in there..

Christine
11-20-2006, 11:44 AM
Sorry it took so long for me to answer--i was on vacation.

My tumors were benign...APparently, the tumors can continue to grow back , but i have no clue how!!
The radioactive iodine treatment is what the doctor mentioned, but we are waiting to get the next set of tests

That makes sense. From what I am told, surgery alone will not remove *all* of the thyroid gland or thyroid cells (even though they tell you it is a total thyroidectomy). I guess the tissue/cells that the surgeon leaves behind can continue to give you problems.

lyeag
11-20-2006, 01:43 PM
Finally! Some answers/help. The cardiologist was GREAT. Turns out the appt was for EKG/consult, they will do the echo in Jan. Anyway, the cardiologist said the murmurs were benign and nothing to worry about. I specifically told him we were going to WDW, and I asked him if I could go on the rollercoasters. Turns out he has been to Disney and really is a big fan too. Anyway, he said go right ahead and ride whatever I want. YIPPPEEEE :cool1:

He also looked at me and my labs and then told me, Yep, you are hyperthyroid, and prescribed some beta blockers. He gave me 50mg Toprol, and told me since my bp is good, if it makes me too lightheaded to cut them in half.

So, in all I am feeling much better about things, but a little sad as he told me to cut out my caffine. I was down to one cup of coffe in the am, but gee, now I have to go decaf????

Is this a necessity due to the beta blockers or just because of the thyroid thing?

Thanks for putting up with me and all my questions and drama. :)

Fan2CSkr
11-21-2006, 12:04 AM
Finally! Some answers/help. The cardiologist was GREAT. Turns out the appt was for EKG/consult, they will do the echo in Jan. Anyway, the cardiologist said the murmurs were benign and nothing to worry about. I specifically told him we were going to WDW, and I asked him if I could go on the rollercoasters. Turns out he has been to Disney and really is a big fan too. Anyway, he said go right ahead and ride whatever I want. YIPPPEEEE :cool1:

He also looked at me and my labs and then told me, Yep, you are hyperthyroid, and prescribed some beta blockers. He gave me 50mg Toprol, and told me since my bp is good, if it makes me too lightheaded to cut them in half.

So, in all I am feeling much better about things, but a little sad as he told me to cut out my caffine. I was down to one cup of coffe in the am, but gee, now I have to go decaf????

Is this a necessity due to the beta blockers or just because of the thyroid thing?

Thanks for putting up with me and all my questions and drama. :)


I'm glad you are finally starting to get some answers! The beta blocker is really just to help with symptoms it will not have any effect on lessening the hyperness of the thyroid but it WILL make you feel better and lessen palpitations. I was told to lessen my caffeine intake as well so now I just have my one cup in the AM and sometimes one in the afternoon. I dont drink any soda. You will soon learn your triggers. Mine are red wine, certain prepared chinese food dishes and a select few other prepared food items. Eating as wholesome as possible helps. Iodine (shellfish is a no no too) intake should be watched closely. You want to avoid it. Honestly I did not cut my one cup of coffee out a day but I suppose if I HAD to I would have. It is not an interaction of the coffee with the beta blocker but rather just that caffeine is a stimulant and being hyper is stimulant enough.

When will you see the endo or your primary doc? Has anyone told you how hyper you are? Since you mentioned feeling better I am guessing you arent too bad and thats a great thing. Just keep in mind this can and usually does fluctuate. You should be starting an anti thyroid medication ASAP this would be either Tapazole (Methimazole) or PTU (Propylthiouracil) since it takes some time to adjust in the blood and for you to feel the effects. Unless they may feel youarent so bad and this could be fleeting? Sometimes people can become hyper for a number of reasons and not all permanent. A virus can trigger this response and dissapate as quickly as it appeared to begin with.

Has anyone mentioned Graves? This is one of the major cause of hyperthyroidism. It takes some time to get all the answers and it can be a long journey dealing with the thyroid. Stay persistent and keep a journal of your symptoms this helps you and your docs greatly!

OK..stay well and keep us posted please and remember anything you have a question about we are here for you. :hug:

lyeag
11-21-2006, 06:18 AM
I'm glad you are finally starting to get some answers! The beta blocker is really just to help with symptoms it will not have any effect on lessening the hyperness of the thyroid but it WILL make you feel better and lessen palpitations. I was told to lessen my caffeine intake as well so now I just have my one cup in the AM and sometimes one in the afternoon. I dont drink any soda. You will soon learn your triggers. Mine are red wine, certain prepared chinese food dishes and a select few other prepared food items. Eating as wholesome as possible helps. Iodine (shellfish is a no no too) intake should be watched closely. You want to avoid it. Honestly I did not cut my one cup of coffee out a day but I suppose if I HAD to I would have. It is not an interaction of the coffee with the beta blocker but rather just that caffeine is a stimulant and being hyper is stimulant enough.

When will you see the endo or your primary doc? Has anyone told you how hyper you are? Since you mentioned feeling better I am guessing you arent too bad and thats a great thing. Just keep in mind this can and usually does fluctuate. You should be starting an anti thyroid medication ASAP this would be either Tapazole (Methimazole) or PTU (Propylthiouracil) since it takes some time to adjust in the blood and for you to feel the effects. Unless they may feel youarent so bad and this could be fleeting? Sometimes people can become hyper for a number of reasons and not all permanent. A virus can trigger this response and dissapate as quickly as it appeared to begin with.

Has anyone mentioned Graves? This is one of the major cause of hyperthyroidism. It takes some time to get all the answers and it can be a long journey dealing with the thyroid. Stay persistent and keep a journal of your symptoms this helps you and your docs greatly!

OK..stay well and keep us posted please and remember anything you have a question about we are here for you. :hug:

O man. No lobster, shrimp, or crab legs???? Nobody has said anything yet.

I probably won't see my primary doc until after the results of the scan are in. I do get the feeling that they either they caught this very early or the serum labs didn't come back as off as they thought they were. I would think if the serum labs came back indicating Graves or anything else, they would have told me, but then again I am dealing with military health care. Unless I get very lucky and get in quickly with the thyroid scan, I might not get any real answers to the thryoid question until after the holidays. I hope not, but I am preparing myself for the possibility.

It would be great if this was just temporary. With the military health care system, the wheels move pretty slowly. I am just glad that I seem to be seeing some really on the ball docs. The cardiology group I went to was very impressive.


Thanks so much, Fan2CSkr, I really appreciate being able to come here and post and know that others have been through all this and can anwer some of my questions.

lyeag
12-01-2006, 11:35 AM
Ok, I had the thryoid ultrasound on Tuesday. I called today to get the results and was told that it showed thyroiditis-swelling. No mention of any tumors, or nodules, so that is great news.

I am now scheduled for another scan with uptake on the 11th to find out why I am swollen. Hopefully, this is one of those types that just resolves itself over time. I am still taking the beta blockers, and with those I am feeling much better. I have not lost any more weight, (or gained), and I seem to have much more energy.

That is about it for now, but I thought I would share my good news on the scan. Have a great weekend everyone!

luvwinnie
12-14-2006, 01:37 PM
Hi, CHristine, just found this board! My SIL is going for a whole body scan,but first has to stop her thyroid meds for 10 days. She had thyroid cancer about 3 years ago and now has a growth in the area again. Her current dr. is worried because he thinks her orig dr should have done radiation...he did not.

Blueeyes101817
12-14-2006, 05:01 PM
Hi everyone-
I am going on Monday for an ultrasound to see if there are any problems with scar tissue/tumors in my neck (thyroid was removed completely when iw as 15)..so hopefully i have some good news!

Blueeyes101817
12-29-2006, 11:46 PM
Well i have my results from the ultrasound. There are no more tumors and/or scar tissue left in my neck! im happy about that, but then again, a little upset..
Ive been having alot of neck pain and if there was a cause of it, it would get fixed..now it seems that i will just have this pain my whole life

rie'smom
12-30-2006, 01:28 AM
I'm happy to hear the first part. It's so hard when you have unexplained pain. Hugs and prayers that you find relief.

kathleena
12-30-2006, 08:56 AM
Well i have my results from the ultrasound. There are no more tumors and/or scar tissue left in my neck! im happy about that, but then again, a little upset..
Ive been having alot of neck pain and if there was a cause of it, it would get fixed..now it seems that i will just have this pain my whole life

Sorry to hear this. If you never had PT after your surgery, your muscles may still be trying to heal from the surgery. Do you know if it is the muscles in your neck?

Maybe some physical therapy could help that would teach you how to do stretches that will help the muscles in pain. I was having pain in my jaw/left side of face, and now after a few months of therapy to the muscles in my neck, it is starting to go away.

Another suggestion is to seek out an Osteopath who does Osteopathic Manipulation and/or Cranial/Sacral Therapy. I have had that with the PT and it's amazing! It's very gentle, I can't believe what it has done for my neck.

I had PT and OMT in combination, and am now also getting medical massage therapy.

rpbert1
01-04-2007, 05:39 PM
I was Diagonosed with Hyper about 3 years ago.
I had been having some problems for about 2 years prior to being diagnosed.
Heart palpitations and my legs and boby shaking or tremors. i had left it for quite some time, as my DM had been diagnosed in her forties [which i was at the time] with Parkinsons ,so kept putting of going to the doc. When i eventually went he said he had a good idea what it was , and he mentioned thyroid, but needed blood tests to be sure, asked a few questions , and my DM had hyper when she was younger, so he told me it can be genetic.
Blood results came back positive, i was on Beta Blockers and other medication for about 2 years, but had problems with the meds.
They eventually gave me Radio Iodine treatment, i am now Hypo and on Thyroxine to balance the levels out and have not been to bad this last year.
Before i got it sorted i had really bad problems , i am sure you can relate to them, i had really bad mood swings if i could call it that. How my DW is still with me i will never know, as i said to her ,if it had been the other way around i would have left her long ago.
I could literally have murdered people for the silliest things.Sometimes i would just go of in a rage, other times i would not be able to sleep and eventually explode , and i tried to explain to people,that you have no control over it, its as if someone else is controlling you.
thankfully my levels are normal for the last 18 months and i get check every year now.

Blueeyes101817
01-04-2007, 08:00 PM
I'm happy to hear the first part. It's so hard when you have unexplained pain. Hugs and prayers that you find relief.

Sorry to hear this. If you never had PT after your surgery, your muscles may still be trying to heal from the surgery. Do you know if it is the muscles in your neck?

Maybe some physical therapy could help that would teach you how to do stretches that will help the muscles in pain. I was having pain in my jaw/left side of face, and now after a few months of therapy to the muscles in my neck, it is starting to go away.

Another suggestion is to seek out an Osteopath who does Osteopathic Manipulation and/or Cranial/Sacral Therapy. I have had that with the PT and it's amazing! It's very gentle, I can't believe what it has done for my neck.

I had PT and OMT in combination, and am now also getting medical massage therapy.

Thanks..
It could be the muscles in my neck..the muscles were cut for one of the surgeries..i wonder if insurance would cover it this long after the surgery though?

bengalbelle
01-05-2007, 09:31 PM
I've lurked here a bit and guess I'll join in.

I was diagnosed with hypothyroidism when I was 15 (almost 20 years ago). I've been tired all the time, for as long as I can remember, and that's always my #1 complaint. I was actually diagnosed because my mom took me to the doctor thinking I had chronic fatigue syndrome.

I delivered my second child about 4 months ago and my levels were fine at that time (I've been on Synthroid since I was diagnosed). Lately, though, I've been experiencing lots of symptoms that make me believe it's not functioning properly. Excessive fatigue, dry, dry skin, hair falling out (though that could be a post partum issue), muscle aches and pains (particularly in the joints), muscle spasms, and cold hands and feet.

Last night I started breaking out in hives and went to the doctor today. He suggested that I might have Hashimoto's Disease, which can cause hives. I'll have new bloodwork drawn next week to check my thyroid levels.

I've been letting my OB and Primary Care Physician treat me because my Endo is just too conservative. He'll only look at lab results and not how I'm feeling. Both my OB and PCP will bump it up a little.

The most frustrating thing for me, is that they never seem to get it regulated for any extended period of time. I've often bounced around from hypo to hyper without changing the dosage of the meds. Then they'll up the dosage and it will work for a while, then I start the cycle all over again.

My father's thyroid quit working completely, so I'll probably be facing that in the years to come.

:hug: to everyone dealing with this.

Blueeyes101817
01-05-2007, 10:59 PM
I've been letting my OB and Primary Care Physician treat me because my Endo is just too conservative. He'll only look at lab results and not how I'm feeling. Both my OB and PCP will bump it up a little.

.

Ive been having that problem with 2 or 3 endocrinologists around here as well. I am having my primary care physician oversee my thyroid issues.
I went to the endocrinologist and he said my levels were in the normal range, but i was feeling so "off." When i told him i felt "low' he said that it was not possible. I went to my primary dr and she checked levels and was very helpful--she told me that i have never been "typical" with my thryoid problems so wh ywould i start now..She gave me a new dose and i f elt a ton better!

I hope they figure out what is wrong dawn!

flying_babyb
01-05-2007, 11:29 PM
Omg can i join you? My thyroid is well, working now. I have been underactive at least 8 times, hyperactive twice and now normal. They cant get it right. Nice to find others with T problems. I worry daily about getting thyroid cancer. We have a family history.

Hixski
01-06-2007, 04:34 AM
Hypothyroidism here. It has caused me to put on over a 100 lbs over the course of 20 years. I walk on a treadmill every chance I can get. It does not do a bit of good. (I have firm fat though) They check me everytime I go to the doctor and it is always in the normal range. Well I sure don't feel normal. I have had several doctors and they just tell me I am healthy. (Very healthy for someone 100 lbs overweight.) I wish someone could help me lose the weight.:confused3

lyeag
01-07-2007, 02:04 PM
Hi guys, I finally got the results of the uptake scan and it says it was normal???? The last labs I had done were just before the scan and the TSH was like 33. I don't get it. How do you go from .03 to 33 without any type of thyroid medication?????

The nurse called this week telling me to do more labs. I just wish I knew what is going on. I am so sick of it.

TDC Nala
01-07-2007, 02:25 PM
Hey look, a thyroid thread. I have Hashimoto's disease.

I think I need my synthroid dosage adjusted, it was adjusted last year and the symptoms I had before diagnosis are returning. My appointment is in February.

Christine
01-07-2007, 05:51 PM
Hi guys, I finally got the results of the uptake scan and it says it was normal???? The last labs I had done were just before the scan and the TSH was like 33. I don't get it. How do you go from .03 to 33 without any type of thyroid medication?????

The nurse called this week telling me to do more labs. I just wish I knew what is going on. I am so sick of it.


33!!! Are you sure that was your TSH? That is way too hypo. I think you need a repeat!

kathleena
01-07-2007, 06:00 PM
Hypothyroidism here. It has caused me to put on over a 100 lbs over the course of 20 years. I walk on a treadmill every chance I can get. It does not do a bit of good. (I have firm fat though) They check me everytime I go to the doctor and it is always in the normal range. Well I sure don't feel normal. I have had several doctors and they just tell me I am healthy. (Very healthy for someone 100 lbs overweight.) I wish someone could help me lose the weight.:confused3

Are you getting copies of your labs Hixski? The "old normal" is not the "new normal". Get copies of your labs - try to get the last 3 or 4 and then report back with 1) the TSH value 2) the range that the lab uses for TSH 3) the same if they took T4 4) and if they did take T4, was it total T4 or Free T4?

If you come back with those answers, either I or someone else here can help explain or maybe give more advice.

Also - {{{trying to say this gently and with hugs}}} - yes, being hypo does cause some weight gain, but it's only about 10-15 lbs. What can cause significant, uncontrollable weight gain are problems with the pituitary (Cushing's) and other endocrine disorders that would not be detected with a TSH test (cortisol, insulin resistance etc.......). It could be that they need to start checking for other things......

Don't despair. Check into your labs and come back......

kathleena
01-07-2007, 06:06 PM
Hi guys, I finally got the results of the uptake scan and it says it was normal???? The last labs I had done were just before the scan and the TSH was like 33. I don't get it. How do you go from .03 to 33 without any type of thyroid medication?????

The nurse called this week telling me to do more labs. I just wish I knew what is going on. I am so sick of it.

TSH numbers move up and down very slowly. Get copies of your labs that supposedly show .03 and 33. Report back with the TSH number and the lab range. Also report if they measured T4 and the number and range. Find out if it was Free T4 or Total T4.

And while you are dealing with this - I have one piece of advice - always get a copy of your lab report.

lyeag
01-07-2007, 06:38 PM
33!!! Are you sure that was your TSH? That is way too hypo. I think you need a repeat!

oops 23, not 33. I went back and double checked. Anyway, that is still a huge jump in one month.

lyeag
01-07-2007, 06:42 PM
TSH numbers move up and down very slowly. Get copies of your labs that supposedly show .03 and 33. Report back with the TSH number and the lab range. Also report if they measured T4 and the number and range. Find out if it was Free T4 or Total T4.

And while you are dealing with this - I have one piece of advice - always get a copy of your lab report.

I found the latest printout of my labs. It shows my labs from Dec 6 and Nov 9

Nov 9
Free T4 1.20
Free T3 3.28
TSH .03


Dec 6

Free T4 .47 (.7-1.9)
Free T3 1.33 (1.45-3.48)

TSH 23.02 (.49-4.67)

kathleena
01-08-2007, 08:08 PM
I found the latest printout of my labs. It shows my labs from Dec 6 and Nov 9

Nov 9
Free T4 1.20
Free T3 3.28
TSH .03


Dec 6

Free T4 .47 (.7-1.9)
Free T3 1.33 (1.45-3.48)

TSH 23.02 (.49-4.67)

Wow that is a huge difference! :confused: :confused: :confused: I wonder if there was a lab mix up with your results???? I've just never seen or heard of such a big jump before!

The Nov 9th is moderately hyper, and assuming it was the same ranges, your FT 3 and FT 4 weren't out of range yet. That's why they did the uptake.

But everything has tanked on the second one? I'm so sorry - you must feel like cr*p!!!!! They need to get some synthroid into you.

Did they test your antibodies?
Did they say anything at all about the difference in the labs? Suggest that you have a third one maybe?

They need to test the TPO and oh gee the second one escapes me at the moment. They also should test the TSI antibodies - although that test is much more expensive than the other two, so not unless they really suspect you have Graves.

Did they mention nodules or doing a scan? Sorry if you talked about these things before and I forgot.

I'm just :confused: :confused: :confused: !

kathleena
01-08-2007, 08:09 PM
Oh and good for them for doing both the FT4 and FT3!!!!!

lyeag
01-09-2007, 06:32 AM
Wow that is a huge difference! :confused: :confused: :confused: I wonder if there was a lab mix up with your results???? I've just never seen or heard of such a big jump before!

The Nov 9th is moderately hyper, and assuming it was the same ranges, your FT 3 and FT 4 weren't out of range yet. That's why they did the uptake.

But everything has tanked on the second one? I'm so sorry - you must feel like cr*p!!!!! They need to get some synthroid into you.

Did they test your antibodies?
Did they say anything at all about the difference in the labs? Suggest that you have a third one maybe?

They need to test the TPO and oh gee the second one escapes me at the moment. They also should test the TSI antibodies - although that test is much more expensive than the other two, so not unless they really suspect you have Graves.

Did they mention nodules or doing a scan? Sorry if you talked about these things before and I forgot.

I'm just :confused: :confused: :confused: !

From what I have been told, everything is negative. No nodules, the antibody was ok, the uptake was fine..... I am to go get another set of labs drawn today. I feel very tired, cold, and FAT. I gained back all 15 pounds thanks to the dining plan and whatever is going on with me. I haven't seen my dr in almost 3 months, I just keep getting calls to go take different tests or labs. I am just really sick of it all.

kathleena
01-09-2007, 06:59 AM
From what I have been told, everything is negative. No nodules, the antibody was ok, the uptake was fine..... I am to go get another set of labs drawn today. I feel very tired, cold, and FAT. I gained back all 15 pounds thanks to the dining plan and whatever is going on with me. I haven't seen my dr in almost 3 months, I just keep getting calls to go take different tests or labs. I am just really sick of it all.

:hug: :hug: :hug:

I think you should pressure them about the labs results being so different - I think you shouldn't be charged for at least one of them. I was thinking of this when I was taking my synthroid this am and wondering if the lab may have used the wrong test tube (they have different substances in the tubes depending on the test) or switched your lab results. It just seems wrong to me. When I have a dose change, the doc rechecks me in 6-8 wks as it takes that long to get just a small change. She started me on just .25 synthroid and TSH moved from 3.23 to 2.1 in 8 weeks. And T4 only moved from 1.0 to 1.1.

Even when I was hyper, the docs office always told me - it takes a long time to move TSH and it moves very slowly. That lab - the one with the TSH at 22 and the T4 and T3 correspond to your symptoms. With the first lab, you may not have had any symptoms of hyper yet as your T3 and T4 were normal. I had a really low TSH and no symptoms for 4 months before all the heart palpitations started. All I had was a really HUGE appetite without gaining weight.

:hug: :hug: :hug: Thyroid problems really stink!

lyeag
01-09-2007, 07:44 AM
Well, we are military, so I am not paying for any of this. At least there is a bright side! I was put on beta blockers in Nov due to rapid heartbeat. I was losing weight hand over fist and was just so jittery. As soon as the beta blockers kicked in, my weight started to creep up. The dining plan did the rest to my weight.

Hopefully, the labs today will shed some light on what is happening. I can call to get the results tomorrow, or go in and get a print out.

Tazicket
01-09-2007, 04:21 PM
Hi! I was just diagnosed with hypothyroidism today and stumbled on this thread. My Dr's office called in a prescription for me today and I'll start taking it tomorrow morning. I'm supposed to go back at the end of February to have more blood drawn and checked to see how the meds are working. I'm kind of excited that they know what's wrong with me now and can give me meds to fix it.

Did anybody else with hypo feel starving all the time before going on the regulatory meds? Lately, it seems like I'm always hungry regardless of what I eat. Just wandering if it's related to the thyroid stuff or in my head b/c I've been freaking out wondering what I have for the last couple of weeks.

Thanks for the thread OP!

kathleena
01-09-2007, 07:57 PM
Well, we are military, so I am not paying for any of this. At least there is a bright side! I was put on beta blockers in Nov due to rapid heartbeat. I was losing weight hand over fist and was just so jittery. As soon as the beta blockers kicked in, my weight started to creep up. The dining plan did the rest to my weight.

Hopefully, the labs today will shed some light on what is happening. I can call to get the results tomorrow, or go in and get a print out.

Oh ya, that is hyper - jittery, palps and weight loss. But the beta blockers are just to control your heart rate nad the palps - they shouldn't affect your weight at all.

I swung back and forth - mild hyper and mild hypo for years.

lyeag
01-10-2007, 11:42 AM
The nurse called today to schedule another round of labs in two weeks.

Yesterday's numbers were: (the ranges are the same as the above post)

T3 1.62
T4 .67

TSH 15.36

I asked the nurse about the huge difference in the numbers in the TSH, and she said the dr just thinks it is thyroiditis. The dr is just keeping an eye on the numbers and hoping it is going to resolve itself over time. I sure hope so. It looks like the numbers are going in the right direction.

Christine
01-10-2007, 12:13 PM
The nurse called today to schedule another round of labs in two weeks.

Yesterday's numbers were: (the ranges are the same as the above post)

T3 1.62
T4 .67

TSH 15.36

I asked the nurse about the huge difference in the numbers in the TSH, and she said the dr just thinks it is thyroiditis. The dr is just keeping an eye on the numbers and hoping it is going to resolve itself over time. I sure hope so. It looks like the numbers are going in the right direction.

Okay, so now you are going back down. Wow!!

kathleena
01-10-2007, 08:13 PM
The nurse called today to schedule another round of labs in two weeks.

Yesterday's numbers were: (the ranges are the same as the above post)

T3 1.62
T4 .67

TSH 15.36

I asked the nurse about the huge difference in the numbers in the TSH, and she said the dr just thinks it is thyroiditis. The dr is just keeping an eye on the numbers and hoping it is going to resolve itself over time. I sure hope so. It looks like the numbers are going in the right direction.

Did he say what kind he thought it was? Is this an endo or an internal medicine. I'm thinking endo because you had mentioned the uptake.

http://cpmcnet.columbia.edu/dept/thyroid/thyroiditis.html

Fan2CSkr
01-12-2007, 12:42 AM
The nurse called today to schedule another round of labs in two weeks.

Yesterday's numbers were: (the ranges are the same as the above post)

T3 1.62
T4 .67

TSH 15.36

I asked the nurse about the huge difference in the numbers in the TSH, and she said the dr just thinks it is thyroiditis. The dr is just keeping an eye on the numbers and hoping it is going to resolve itself over time. I sure hope so. It looks like the numbers are going in the right direction.

With a TSH level that you were at its amazing you got out of bed in the AM. I remember you were put on the beta blockers but no anti thyroid meds right? I have suffered thyroiditis quite a few times I have/had Graves disease. Whenever I had a bout my hyper symptoms worsened.

Like mentioned already ask for the thyroid antibodies test. I am familiar with situations where a person can have a bout with hyperthyroidism only to become hypo shortly after. In that case it really isnt Graves at all just hyperthyroidism that's cause has yet to be determined.

I hope you are feeling better and do not have to deal with these ups and downs much longer!:hug:

Me on the other hand recently had a total thyroidectomy due to uncontrolled Graves and I dont know if I'm coming or going. I have my first blood test since the surgery next week and I am so anxious to see where I am at. Weird to be on synthroid now after taking anti thyroid meds for so many years. If its a possibility I feel hypo/hyper! :lmao:

Mackey Mouse
01-12-2007, 06:44 AM
I am just posting here in support of you all.. I do not have thyroid disease but my daughter survived thyroid cancer, thyroidectomy and lives her life on levoxil. Her doctor changed her meds when the synthroid scare happened a while back.. Anyway, I want to say here, I can only imagine how difficult this is for all of you and please know that we support you in anyway we can with a hug or words of advice..

I am really glad there are some good veteran thyroid people who can talk the lingo for those who need the help... I know enough, but not enough to say too much about levels..

I will say this, know your body, know how you feel on whatever dosage they give you and speak up for what you need... I cannot tell you how many times they have fooled with dd's meds and cause such huge issues....too many to name.. so speak up if you do not think the dosage is correct, you know your own body..

Hugs.

lyeag
01-12-2007, 07:53 AM
With a TSH level that you were at its amazing you got out of bed in the AM. I remember you were put on the beta blockers but no anti thyroid meds right? I have suffered thyroiditis quite a few times I have/had Graves disease. Whenever I had a bout my hyper symptoms worsened.

Like mentioned already ask for the thyroid antibodies test. I am familiar with situations where a person can have a bout with hyperthyroidism only to become hypo shortly after. In that case it really isnt Graves at all just hyperthyroidism that's cause has yet to be determined.

I hope you are feeling better and do not have to deal with these ups and downs much longer!:hug:

Me on the other hand recently had a total thyroidectomy due to uncontrolled Graves and I dont know if I'm coming or going. I have my first blood test since the surgery next week and I am so anxious to see where I am at. Weird to be on synthroid now after taking anti thyroid meds for so many years. If its a possibility I feel hypo/hyper! :lmao:

I am pretty sure I had the antibody test already in Nov. I had one lab value that came in a few days later than the others that they had to send away for. I don't remember hearing anything about the results....Yes, they did put me on the beta blockers, but nothing else.

I don't know what is happening really. I get the feeling they think it is tied to some viral trigger. ( I had a sinus infection when this all started) When the numbers were really high I just felt like those early weeks of pregnancy when you don't have any energy. Today I am feeling pretty normal. (whatever that is... LOL)

I am just glad so far it isn't anything major. I really feel for you with a thyroidectomy. That is probably my greatest fear. That feeling of being dependent on the meds for the rest of your life and have to constantly be checking for changes. :hug: Hugs to you that they get you evened out quickly. We are here for you.

Thanks everyone for helping me sort this out!

Fan2CSkr
01-12-2007, 09:39 AM
Thyroiditis causes temporary hyperthyroidism, usually followed with hypothyroidism (underactive thyroid). Thyroiditis is an inflammation of the thyroid gland. There are three types of thyroiditis:

Hashimoto's thyroiditis
subacute granulomatous thyroiditis
silent lymphocytic thyroiditis

I would guess you have subacute granulomatous thyroiditis. It basically translates to a self limited thyroid condition that usually follows an upper respiratory viral infection (YES, could be the sinus infection!) The good news is that 90 to 95% of patients return to normal thyroid function. It sounds to me like you have already progressed to the second phase and actually with your TSH level lowering on your way to becoming Euthyroid (normal thyroid gland function). Laboratory tests in the later phase of disease may show:

*High serum TSH level
*Low serum free T4
You have both.


It sure sounds like it is on its way to resolving itself without any need for medications. I am so pleased that you received proper medical care and testing, consider yourself lucky. Many are not as fortunate. So if I were you I would continue to be diligent with your blood tests track your levels and hope all continues on this predicted path for your dx. I would also ask your doc if you need to stay on the beta-blockers.

I hope with each passing day you continue to feel better! Thank you also for the well wishes.:)

OKWAnneMarie
01-22-2007, 10:06 AM
Oh ya, that is hyper - jittery, palps and weight loss. But the beta blockers are just to control your heart rate nad the palps - they shouldn't affect your weight at all.

I swung back and forth - mild hyper and mild hypo for years.




I was just reading Dr. Oz's book (YOU ON A DIET), and he explained that Beta Blockers DO affect weight losss.

When you are taking Beta Blockers, it is very hard to lose weight. I was NOT happy to read that, since I have both a thyroid problem and I take a beta blocker, but it does explain why it is so hard for me to lose weight.

lyeag
01-26-2007, 11:59 AM
ok, new labs in

Free T3 2.17 (1.45-3.48)
Free T4 .67 (.7-1.9)

TSH 8.19 .49-4.67
The Dr now wants to put me on synthroid. I will go pick it up later and report back on how much. I am suprised with the numbers still moving around that much that he is giving me something. Two weeks ago the TSH was at 15.

Anyway, I am to do get labs done in 6 weeks and schedule a follow up with him.

Fan2CSkr
01-26-2007, 01:04 PM
ok, new labs in

Free T3 2.17 (1.45-3.48)
Free T4 .67 (.7-1.9)

TSH 8.19 .49-4.67
The Dr now wants to put me on synthroid. I will go pick it up later and report back on how much. I am surprised with the numbers still moving around that much that he is giving me something. Two weeks ago the TSH was at 15.

Anyway, I am to do get labs done in 6 weeks and schedule a follow up with him.

He's giving you something because you have gone far too long already with a TSH level that is too high. Your T3 and T4 can stand a boost too. I feel my best with a suppressed TSH and my T3 and T4 pushing the upper ends of their ranges. While everyone is different, your TSH is just too high. I would be cold very very tired and feeling like crap overall. It is totally not unusual for you to now be hypo following your bout with hyper. Most people will stay medicated on thyroid replacement for life after that happens. Be thankful, in a few weeks you should be feeling much better and on your way to becoming euthyroid! The next set of labs is six weeks, the amount of time it takes to get a steady level of synthroid in your system. Good Luck and keep us posted! :)

lyeag
01-26-2007, 01:17 PM
I am just sort of confused. The last time I spoke to the nurse, she said it was thryoiditis and the dr was just watching to see if it resolves itself. :confused3 With the numbers, specifically the TSH, making yet another huge jump, wouldn't you wait another 2 weeks to see if they move more? Like I mentioned, the TSH went down another 7 points.


I am feeling cold and tired most days, but I am functioning alright. Maybe I've been feeling like crap for so long, that I can't tell the difference anymore.:rotfl:

Mackey Mouse
01-26-2007, 01:29 PM
Hugs Lyeag... I do hope they figure this out for you and get you straightened out..

I am not so good on the numbers, now if my daughter was reading this thread, she would be able to tell me exactly where you are with your levels..

I do hope the synthroid helps with the symptoms and you start feeling like your old self real soon..

Fan2CSkr
01-26-2007, 01:50 PM
I am just sort of confused. The last time I spoke to the nurse, she said it was thryoiditis and the dr was just watching to see if it resolves itself. :confused3 With the numbers, specifically the TSH, making yet another huge jump, wouldn't you wait another 2 weeks to see if they move more? Like I mentioned, the TSH went down another 7 points.


I am feeling cold and tired most days, but I am functioning alright. Maybe I've been feeling like crap for so long, that I can't tell the difference anymore.:rotfl:

Nov 9
Free T4 1.20
Free T3 3.28
TSH .03


Dec 6

Free T4 .47 (.7-1.9)
Free T3 1.33 (1.45-3.48)

TSH 23.02 (.49-4.67)

Jan -07
Free T3 2.17 (1.45-3.48)
Free T4 .67 (.7-1.9)

TSH 8.19 .49-4.67

I added your recent labs to your previous two.

Since your levels are rebounding I dont see why you cant ask your Doctor to wait another two weeks and test again before making a decision. Based on your results I totally agree with you.

lyeag
01-26-2007, 03:26 PM
Nov 9
Free T4 1.20
Free T3 3.28
TSH .03


Dec 6

Free T4 .47 (.7-1.9)
Free T3 1.33 (1.45-3.48)

TSH 23.02 (.49-4.67)


January 10th labs:
T3 1.62
T4 .67

TSH 15.36

Jan 25-07
Free T3 2.17 (1.45-3.48)
Free T4 .67 (.7-1.9)

TSH 8.19 .49-4.67

I added your recent labs to your previous two.

Since your levels are rebounding I dont see why you cant ask your Doctor to wait another two weeks and test again before making a decision. Based on your results I totally agree with you.

I added in my labs from the 10th, and now you can really see the pattern of them coming down - especially the tsh. I am going to get the script after 4, and hopefully I can catch the nurse then.

teacups
01-27-2007, 08:59 PM
Hi Liz!

I hate being hyperthyroid. I know many/most people complain of HYPOthyroidsim, but I find being hyper to be much more intolerable. I've been severely hypo (TSH well over 100) and mildly hyper and it's the hyper side that gives me the most discomfort. I hate the racing heart and palpitations.

Try gaining 50 pounds in one-two months, loosing all energy to the point of your kids practically existing without you, falling into an ugly deep depression that really hangs in there thru thick and thin, as if THIN is even a word you'd ever mumble again! your skin flaky in ugly places, forgetting everything and knowing your not insane but fearing you are starting to become very stupid, rememebering the person you used to be and actually missing yourself! OH and the best part is the fact that your labs come back "within normal range". I'm not doggin on HYPER people, I was one of them once until the doctor told me to swallow poison and I did it... I would go back to hyper/graves in A FLASH! Hypo robs you of the personal resourses you need to help yourself. It's degrading and humiliating and ugly. And the doctors have never ever, ever been any help to me with this. When I was hyper I could freak myself out with the racing heart badly... but I would rather have that today, believe me. Well wait... I'd rather have NEITHER! THEY BOTH SUCK!!!

Fan2CSkr
01-28-2007, 02:12 PM
Try gaining 50 pounds in one-two months, loosing all energy to the point of your kids practically existing without you, falling into an ugly deep depression that really hangs in there thru thick and thin, as if THIN is even a word you'd ever mumble again! your skin flaky in ugly places, forgetting everything and knowing your not insane but fearing you are starting to become very stupid, remembering the person you used to be and actually missing yourself! OH and the best part is the fact that your labs come back "within normal range". I'm not doggin on HYPER people, I was one of them once until the doctor told me to swallow poison and I did it... I would go back to hyper/graves in A FLASH! Hypo robs you of the personal resourses you need to help yourself. It's degrading and humiliating and ugly. And the doctors have never ever, ever been any help to me with this. When I was hyper I could freak myself out with the racing heart badly... but I would rather have that today, believe me. Well wait... I'd rather have NEITHER! THEY BOTH SUCK!!!


Do you have Graves? When were your last labs? What are the results? Do you take any thyroid hormone replacement? What, and what is the dose? I'm sorry, I remember reading and commenting on one of your posts but don't recall the details. When did you have your thyroid ablated?

I've been hyper to the point of thyroid storm. That's a hyper most will never know, thankfully. Me personally, I would take hypo over that hell any day but I agree, I would rather have neither! Have any great hospitals nearby? Sounds like its time to take matters into your own hands and get yourself well! Oh and that hypo "brain fog" was just unbelievably horrendous!

rie'smom
01-29-2007, 12:17 AM
Is everyone here on Synthroid? I take Armour 3grains. Synthroid didn't work for me at all. It make my blood levels read ok but I felt like-well you know. Just letting anyone w/Synthroid problems know there's an alternative. Many doctors don't like it because they feel the doses aren't constant but they have to go through stringent testing too. In fact, this was the drug used to treat Hypothyroidism for about 100 years until Synthroid was formulated. It's been a miracle in my life and in my husbands.

Mackey Mouse
01-29-2007, 05:53 AM
I have heard of the Armour medication, wonder why more endocrinologists do not use it. Wait, I bet I know the answer the big drug companies that make the others lobby more for the doctors to use them. My daughter's doctor took her off synthroid when there was talk that not every drug company was making it the same so everyone was getting a different dosage, although it was suppose to be let's say 5 mgs....She takes Levoxil, but I have to say people who live without thyroid deal with the constant of keeping those levels stable and if they are not, it is so unpleasant for them..

Hugs to you all, I understand, believe me I do understand.

Christine
01-29-2007, 07:14 AM
I am just sort of confused. The last time I spoke to the nurse, she said it was thryoiditis and the dr was just watching to see if it resolves itself. :confused3 With the numbers, specifically the TSH, making yet another huge jump, wouldn't you wait another 2 weeks to see if they move more? Like I mentioned, the TSH went down another 7 points.


I am feeling cold and tired most days, but I am functioning alright. Maybe I've been feeling like crap for so long, that I can't tell the difference anymore.:rotfl:

Yeah, I would agree that one would think he would wait another 2 weeks. But, as the other poster said, you've been hypo for a bit too long now. Hopefully he is just giving you a very small amount of thyroid hormone.

After one of my thyroid cancer treatments, my TSH was at about 145. I went back on my medication and after 6 weeks, I felt fabulous. I was shocked that my TSH was at 8.0. I felt great at that number.

Christine
01-29-2007, 07:16 AM
I have heard of the Armour medication, wonder why more endocrinologists do not use it. Wait, I bet I know the answer the big drug companies that make the others lobby more for the doctors to use them.
Hugs to you all, I understand, believe me I do understand.


I participate on a thyroid cancer survivors list and this issue comes up often. One of the moderator/doctors on the list is EXTREMELY vocal about using Armour (he is against it) and feels that any "self-respecting" endocrinologist would not use it. I wish I could find one of his "rants" about it, but I can't. It seems to me that some of his concerns are valid, but I just can't remember them. As it is, I've worked with 3 different endos and NONE of them would touch the stuff.

rie'smom
01-29-2007, 07:36 AM
I forot too that a prescription of Armour is about 15.00 w/out insurance. Armour is dessicated porcine(pork) thyroid. It's complete T3/T4 which of course means instead of 2 meds that you can take only 1. If Synthroid or the other meds work,great but if they don't,try something else. It angers me when docs refuse to consider other meds. It's like a male OB who totally doesn't get menopausal symptoms,except to throw estrogen at you-take this and shut-up. They count too much on the lab results and pay no attention to symptoms.
This is a website that I've found. You may or may not find it good reading: /www.stopthethyroidmadness.com/

Christine
01-29-2007, 08:16 AM
Okay, here is the info from one this country's "top" endocrinologists. Take it or leave it, but many endos feel this way:

Levothyroxine (T4) is the major product
of the thyroid gland and is essentially a
prohormone with minimal (if, debatedly, any)
activity of its own. It has a long and stable
half-life in the blood (one week) and is
transported into cells where it is converted into
T3, which directly interacts with receptors which
bind DNA and regulate genes. All of this has
been well-studied and constitutes a vast medical
and molecular biology literature. For patients
without thyroid glands, the ingestion of a pure
levothyroxine product provides ALL of the
necessary thyroid hormone products consequent to
normal metabolic and enzymatic bodily processes.

There is absolutely no conceivable role
for taking Armour thyroid extract or mixtures of
T3 and T4. Most of my colleagues and I would be
happy if the FDA removed these items from
production. Thyroid extract is a mixture of T4,
T3, thyroglobulin, and many other breakdown
products with erratic pharmacokinetics and nearly
impossible to accurately titrate for suppression
of TSH. There is no magical or supernatural or
any advantage to this animal product. Armour
thyroid provides a mixture of hormones that are
produced in pigs, not in humans. The only
reasonable medication is pure levothyroxine
(choose your brand). Cytomel is useful for the
first four weeks of the six-week levothyroxine
withdrawal period in preparation of I-131 scans
and/or therapy. It also has very limited utility
for supplemental treatment of myxedema coma
unresponsive to levothyroxine. (A medical study
from a couple of years ago suggesting T3
supplementation of levothyroxine therapy for
hypothyroidism is not generally accepted by
thyroidologists, for many good reasons, and
requires a great deal of confirmatory research
before any of its suggestions be used for
patients.)

There is nothing gained by choosing
medications based on "natural" extracts or
processes. Such items, frequently found in
"Health Food" stores, are often dangerous,
impure, untested, and of unproven value. Their
designation as a "natural" product merely
protects their manufacturers from having to
justify their purity, safety, and efficacy to the
FDA (which is empowered to protect us from
"pharmaceuticals" only), permitting great
financial profits at the expense of the public.
Many new drugs, such as Taxol (from the Yew
tree), and old drugs, such as penicillin (from
mold), come from sources in nature. In
comparison to "Health Food" shenanigans, these
natural products are stringently purified and
tested prior to making them available as
medications. It is possible that a few of the
"natural" products may have a fraction of a
percent of a useful agent, mixed in with far
larger quantities of toxic and useless "natural"
chemicals. Next time you go to these unregulated
"Health Food" stores, consider that the poison on
the darts used by various native peoples did not
come from a drug store.

Finally, in the wake of experience with
"mad cow" disease in England and the known
presence of prion diseases in cows, sheep,
humans, and other mammals, anyone who would
knowingly take an animal product over a
chemically pure synthesized compound should have
their head examined (for spongiform
encephalopathy).

lyeag
01-29-2007, 09:14 AM
Yeah, I would agree that one would think he would wait another 2 weeks. But, as the other poster said, you've been hypo for a bit too long now. Hopefully he is just giving you a very small amount of thyroid hormone.

After one of my thyroid cancer treatments, my TSH was at about 145. I went back on my medication and after 6 weeks, I felt fabulous. I was shocked that my TSH was at 8.0. I felt great at that number.

I didn't get to speak to anyone, but I did pick up the synthroid. The bottle says .1, the pills have a 100 on them and are yellow. I have been taking them for 3 days now. I don't feel much different, maybe not quite so tired, but still cold. I have been really good about making sure I take it at the same time and without food.

Thanks for your input.:goodvibes

Fan2CSkr
01-29-2007, 09:26 AM
I love this thread! Lots of food for thought. Each of us being able to make informed decisions based on whats right for us as an individual.

rie'smom Is everyone here on Synthroid? I take Armour 3grains. Synthroid didn't work for me at all. It make my blood levels read ok but I felt like-well you know. Just letting anyone w/Synthroid problems know there's an alternative. Many doctors don't like it because they feel the doses aren't constant but they have to go through stringent testing too. In fact, this was the drug used to treat Hypothyroidism for about 100 years until Synthroid was formulated. It's been a miracle in my life and in my husbands.

I am on Synthroid at the moment but its just been over a month now. For the past 3 years I have been on Anti-Thyroid medications. How long have you been taking Armour? Does your dose remain a constant or does it fluctuate? So your lab values were all in range when taking Synthroid but you just didn't feel well? Still felt hypo, or?

I am amazed that in general The AACE (American Association of Clinical Endocrinologists) and The ATA (American Thyroid Association) as well as MANY, even MOST Thyroid specialists in the US feel that Armour use shows no advantages over synthetic T4. They further feel that Armour is impure and contains hormones and proteins that never exist in the body outside of the thyroid gland. It seems to me that there is a major anti Armour stance in our country.

However I have to question why is it that I have read about and spoken with so many people (mostly women) that take Armour and have NEVER felt better? Please dont construe this as my advocating or pushing Armour since I have no basis personally just like I said what I have learned. Question authority? You betcha! Things in the medical field change constantly whats good for us one day isn't the next, drugs are approved by the FDA one day and pulled the next. Bottom line for me is why do all these people taking Armour feel better if the "industry" says they shouldn't? I am positive it wont work for everyone but neither does any other drug.

It's time for research and time for Doctors to realize patients aren't going to sit back and be dictated to on health care issues that optimally we should have a say in. So anyone interested in exploring all your options can have a look here to see what Doctors in the US will dose Armour.
http://www.armourthyroid.com/locate.html

It is my belief that Armour is absolutely a more difficult drug to dose and learn about, it makes a doctors job more entailed. Too bad! I'm not saying we should all jump ship and insist on being given Armour. For me though if the day comes that after considerable effort to regulate and feel "good" (normal!) while taking synthetic T4 fails, I want options! So long as there are options I will continue to explore each and every one.

Christine
01-29-2007, 09:51 AM
I didn't get to speak to anyone, but I did pick up the synthroid. The bottle says .1, the pills have a 100 on them and are yellow. I have been taking them for 3 days now. I don't feel much different, maybe not quite so tired, but still cold. I have been really good about making sure I take it at the same time and without food.

Thanks for your input.:goodvibes

The half-life on Synthroid is 7 days. An endo put it to me this way: the Synthroid pill you take today (say, Monday) won't be felt until next Monday--roughly anyway. It takes awhile to build in the system.

Be careful with it though--.1 is a hefty dose for someone who has a functioning gland. You might find yourself on the hyper end in the next week or two.

Fan2CSkr
01-29-2007, 10:40 AM
I didn't get to speak to anyone, but I did pick up the synthroid. The bottle says .1, the pills have a 100 on them and are yellow. I have been taking them for 3 days now. I don't feel much different, maybe not quite so tired, but still cold. I have been really good about making sure I take it at the same time and without food.

Thanks for your input.:goodvibes

I am surprised your Doctor prescribed this dose. It is high for a patient that still has their thyroid in conjunction with a TSH level that has been on a decline. Thyroid replacement hormone in synthetic T4 form is not fast acting. In other words what you take today will not have an effect on your symptoms or blood levels immediately. Start with a low dose and titrate up slowly. I would question this dose based on your history.

teacups
01-30-2007, 09:04 PM
Hi... I'm the whiner from a few days ago. ;)
I do take Armour, but have in the past taken synthroid. I have even taken them both at the same time. I tried Cytomel, but it causes unbearable migraines each and every time I try it (even though doc says that simply is not possible. Whatever.) So, my labs are all normal, always are. Sometimes I can get them to the extreme upper end of normal, and a tad above and sometimes I can get real low in the normal range. I swear, no matter what the level or the medication... I cant shake these symptoms. I've been working at this for something like 4 - 5 years... I cant even remember anymore. Seems so odd. I totally think that I had something weird happen when my brother died, besides the obvious. I think something chemically changed, and the doc's cant or dont look for whatever it may be. I have researched myself silly... always hitting a brick wall in the end.
I have to say... I dont like Armour any more than I like Synthroid. I just want one of them to work. I am not really crasy about taking pills made from a pig... but when the Synthroid made me cry too much, I switched. Ive done this repeated times over the 21 years Ive been post RAI. I never had thriod storm, thank God, but I was so hyper I could have literally commited a serious crime against another without a thought. NOT A NICE personality trait... and when you add some offspring to that picture, oh it's ugly.
One note: I REFUSE to trust an endo ever again.

LovableGluttons
02-02-2007, 11:41 PM
.

kathleena
02-03-2007, 01:44 PM
Try gaining 50 pounds in one-two months, loosing all energy to the point of your kids practically existing without you, falling into an ugly deep depression that really hangs in there thru thick and thin, as if THIN is even a word you'd ever mumble again! your skin flaky in ugly places, forgetting everything and knowing your not insane but fearing you are starting to become very stupid, rememebering the person you used to be and actually missing yourself! OH and the best part is the fact that your labs come back "within normal range". I'm not doggin on HYPER people, I was one of them once until the doctor told me to swallow poison and I did it... I would go back to hyper/graves in A FLASH! Hypo robs you of the personal resourses you need to help yourself. It's degrading and humiliating and ugly. And the doctors have never ever, ever been any help to me with this. When I was hyper I could freak myself out with the racing heart badly... but I would rather have that today, believe me. Well wait... I'd rather have NEITHER! THEY BOTH SUCK!!!

teacups, I understand your thoughts here, but i've been in both places myself, and I was much, much, much sicker with hyper than I ever was with hypo. I couldn't move 30 feet without being so exhausted I had to lie down. I was also having a resting heart rate of 100 while I was on propranol that rose to 150 within a minute of moving around. I laid on the sofa many nights with my heartrate spiking to 150 for no reason at all and my blood pressure going from 120/80 to 220/180 for no reason.

And I also had extremely dry, flaky skin, my eyebrows fell out as well as chunks of my hair, my legs swelled, my eyes swelled to the point where one now sticks out more than the other, I couldn't concentrate in meetings, forgot conversations 5 minutes after they happened, had horrible diarrhea, coudn't walk up stairs because my muscles were so weak.

Also, I couldn't sleep more than 4 hours a night, usually 30 minutes at a time, my heart pounding so loud the entire time that it kept we awake.

On top of all that, I was irritable and moody.

Talk about degrading, and losing everything you have for personal resources, I couldn't: go to the grocery store, drive myself to the lab for bloodwork, go to work, clean the house, cook, go to my mailbox 200 yards down the street - just to name a few things.

I'm not trying to start a debate here on which is worse, but we can't ever compare the two or think that everyone's hyper and hypo are the same. We all have different bodies and different reactions to them.

kathleena
02-03-2007, 01:56 PM
I didn't get to speak to anyone, but I did pick up the synthroid. The bottle says .1, the pills have a 100 on them and are yellow. I have been taking them for 3 days now. I don't feel much different, maybe not quite so tired, but still cold. I have been really good about making sure I take it at the same time and without food.

Thanks for your input.:goodvibes

I hope you are doing well, glad you are being followed so closely.

A couple of comments:

It takes 6-8 weeks for T4 to work it's wonders in your body and start stabilizing the thyroid/pituitary relationship.

Symptoms lag behind the numbers. Whatever you are feeling today, is likely indicative of where your number was a couple of weeks ago. For example, when I was hyper, I took the meds for two weeks, but got steadily worse, and then turned the corner and started getting better.

kathleena
02-03-2007, 02:03 PM
Part of the debate on Armour, according to my endo, is the T3. Just because you have a higher TSH and lower T4, doesn't mean your T3 is out of whack also. The mechanism that converts T4 to T3 may not be an issue, so giving you something that is both T4 and T3 makes it harder for them to control the T3. And, the levels of T4 and T3 are inconsistent in the Armour product.

And it is true that Synthroid had dosage issues about 5 years ago, but that is resolved.

And some people have adverse reactions to the fillers in Synthroid, Levoxyl and Levothyroxine. My doc moved me from Synthroid to Levoxyl years ago, the first time I was hypo, because I just didn't do well on Sunthroid. levoxyl was fine. I'm now on the levothyroxine and am doing great (after having been hyper inbetween).

And one more thing - my personal opinion that many of the issues many folks have with hypo and regulation with T4 after taking the RAI treatment for hyperT are because of the RAI itself. I chose the antithyroid drug route, and plan to live with a naturally failing thyroid for the rest of my life. I will likely move from hypo to hyper more times before it burns itself out.

Virgo10
02-16-2007, 05:54 PM
I had my gallbladder removed in December and since then have been so tired. I'm a nearly 7 year post thyroidectomy and have been on the same dose of Levoxyl for about 5 years now, 112mcg.

I had an appointment with my regular doctor a couple of days ago and had the usual thyroid bloods done. Come to find out my fatigue isn't because of the gallbladder surgery, it's my thyroid having its first major hiccup in years. The doctor increased my dosage to 125 and I'm really hoping I start feeling better soon. Between the fatigue and just total lack of ambition, I hate this. Oh, and lets not forget about feeling cold all the time. :cold:

lyeag
02-16-2007, 05:59 PM
I had my gallbladder removed in December and since then have been so tired. I'm a nearly 7 year post thyroidectomy and have been on the same dose of Levoxyl for about 5 years now, 112mcg.

I had an appointment with my regular doctor a couple of days ago and had the usual thyroid bloods done. Come to find out my fatigue isn't because of the gallbladder surgery, it's my thyroid having its first major hiccup in years. The doctor increased my dosage to 125 and I'm really hoping I start feeling better soon. Between the fatigue and just total lack of ambition, I hate this. Oh, and lets not forget about feeling cold all the time. :cold:

Oh I hear you on the feeling cold. It seems to bother me more at night than at any other time. I even get the shakes at times!:cold: I hope they get you on the right track again soon!:wizard:

Christine
02-17-2007, 06:50 AM
Oh I hear you on the feeling cold. It seems to bother me more at night than at any other time. I even get the shakes at times!:cold: I hope they get you on the right track again soon!:wizard:


My thyroid levels are fine and I *still* get so cold in my house. I, too, can get the shakes. I find what really helps with that is a scalding, hot bath!:) FWIW, my friend (who has no thyroid issues) gets REALLY cold also and just can't get warm. Sometimes I think it just might be a "woman" thing too.

Fan2CSkr
02-17-2007, 05:14 PM
My thyroid levels are fine and I *still* get so cold in my house. I, too, can get the shakes. I find what really helps with that is a scalding, hot bath!:) FWIW, my friend (who has no thyroid issues) gets REALLY cold also and just can't get warm. Sometimes I think it just might be a "woman" thing too.

Me too! Lately I feel like no matter what I do I cant get warm. Before my TT I never even wore a coat! Now...:cold:

VanessasMom
02-19-2007, 09:50 PM
Hello fellow thyroid survivors! I am a thyroid cancer survivor of 10 1/2 years. I was diagnosed at 24 years old and had a complete thyroidectomy including removal of 2 parathyroid nodes and transplantation of the other 2. I also had tissue scraped out of my chest and lymph nodes removed. I am on levoxyl .112 right now. I have been having a lot of problems lately.

Starting in July, I have intermittently had these episodes of a feeling something bad was about to happen, then major heart palpitations and then almost passing out. This lasts from 30 seconds to 5 minutes. I finally went to the hospital in December a week before Christmas. They ran all the tests on my thyroid, other blood tests, and an EKG. Everything came back normal. They said my thyroid levels were on the high end of normal.

I called my endo and he took me off my meds completely for 4 days. Then lowered me from .125 to .100. After 4 weeks, I was retested and my levels were too low. So, 3.5 weeks ago he raised my meds to .112. I am going for blood work this week again.

I also went to see my cardiologist last month when I started getting the episodes again. He seemed puzzled by it all. He took an echo and EKG. Then, he set me up with a 24hr heart rate monitor for 30 days. It hasn't happened again since them (figures!). Just to be safe, I also have an appt with my neurologist after sorting things out with the cardio. Am I crazy? Is all this because of my meds? I figure it never hurts to be safe. Anyone have similar problems like this?

It's really freaking me out because I have a 2 year old that I stay at home with and no family close by. So, basically if something happens to me during the day no one will know until my dh gets home at 6:00 from work. I have been practicing dialing 911 with my dd, but I'm not sure she totally understands. We will keep at it until she does. I'm worried more about her if something happens to me. (sorry this is soooooo long!)

Christine
02-20-2007, 08:02 AM
Wow, sorry to hear that you are having such a rough time with this.

Do you know what your TSH levels were when you were having the problems. Many people, including myself, are very sensitive to the suppressive levels of thyroid hormone that thyroid cancer patients must endure. I have had my share of heart issues but predominantly I have a rapid pulse most of the time. I've done the cardiologist stuff too and everything is normal.

I think it is very telling that all of this stuff has stopped since you have adjusted your meds. So hopefully, this will be it. If not, you KNOW your heart is okay anyway (even if it flip-flops and races). You may, eventually, need to go on a beta-blocker medication (like Inderal) to keep your heart rate at a slower, steady rate. Many thyroid cancer patients on suppressive therapy end up using this stuff.

Fan2CSkr
02-20-2007, 09:41 AM
Hello fellow thyroid survivors! I am a thyroid cancer survivor of 10 1/2 years. I was diagnosed at 24 years old and had a complete thyroidectomy including removal of 2 parathyroid nodes and transplantation of the other 2. I also had tissue scraped out of my chest and lymph nodes removed. I am on levoxyl .112 right now. I have been having a lot of problems lately.

Starting in July, I have intermittently had these episodes of a feeling something bad was about to happen, then major heart palpitations and then almost passing out. This lasts from 30 seconds to 5 minutes. I finally went to the hospital in December a week before Christmas. They ran all the tests on my thyroid, other blood tests, and an EKG. Everything came back normal. They said my thyroid levels were on the high end of normal.

I called my endo and he took me off my meds completely for 4 days. Then lowered me from .125 to .100. After 4 weeks, I was retested and my levels were too low. So, 3.5 weeks ago he raised my meds to .112. I am going for blood work this week again.

I also went to see my cardiologist last month when I started getting the episodes again. He seemed puzzled by it all. He took an echo and EKG. Then, he set me up with a 24hr heart rate monitor for 30 days. It hasn't happened again since them (figures!). Just to be safe, I also have an appt with my neurologist after sorting things out with the cardio. Am I crazy? Is all this because of my meds? I figure it never hurts to be safe. Anyone have similar problems like this?

It's really freaking me out because I have a 2 year old that I stay at home with and no family close by. So, basically if something happens to me during the day no one will know until my dh gets home at 6:00 from work. I have been practicing dialing 911 with my dd, but I'm not sure she totally understands. We will keep at it until she does. I'm worried more about her if something happens to me. (sorry this is soooooo long!)

Hello and welcome! :) Thyroid issues sure have their ups and downs! I hope you can get to the bottom of yours.

"I have intermittently had these episodes of a feeling something bad was about to happen, then major heart palpitations and then almost passing out."
This sounds like a classic panic/anxiety attack. When an imbalance occurs with our thyroid hormone levels every metabolic process in our body is affected. The upside of this for you is that your heart has been cleared as being the culprit.

Weight gain, pregnancy, estrogen therapy and starting a new medicine, (affecting absorption) as well as an illness can all be a reason for adjustment to your thyroid hormone replacement dose. Sometimes, there can be changes in dose requirements for no apparent reason.

I feel that the more anxious you are over this the more intensified things become. I would definitely discuss the possibility that you experienced an anxiety attack and question methods that can help you relax.

More than likely once you again attain your correct balance these symptoms will subside. Let us know how you make out and I'll be thinking about you! :hug:

bnhasak
02-23-2007, 08:35 AM
Vanessasmom, you sound exactly like me right now.

I was/am exhausted. Had MASSIVE hair loss. Resistant to weight loss. All typical hypo symptoms. Was finally after much testing and finding a goiter, they put me on .137 mcg of synthroid. I started to feel better, my hair stopped falling out after about 1-2 months. It was great....until the palpitations started.

Mind you I have a huge history of panic attacks/anxiety, but this was non-stop. I finally called the endo and they took me off meds and wanted my blood work. Apparently I am still very hypo. Now after being off the meds for almost a month I still am having palpitations and feeling like my heart is just not workign right. shaking, or fluttering in my chest.

I went to the cardio two days ago and am having all the same testing. The thing is, I THINK it is more anxiety/stress than anything. I think it is 100% smart to have it investigated by specialists, but at some point we have to learn to deal with our anxiety and realize we are going to be okay, it is just anxiety.

I am having a really hard time doing that. I have a 3 year old and a 20 month old and I feel much like you do. DH is going to find me laying there with the 3 year old crying and the baby mauled by our dog . (or some other gruesome improbably scenario).

I think being a mom is hard and stressful. Especially these early baby/toddler years. Not having any family to help is VERY stressful. Add to that some legitamite but treatable health issues and you have the makings of a VERY stressful situation. I am just coming to terms with that myself. Throw in our normal hormone fluctations, bills, lonliness, crying/screaming kids and that would make anyones heart skip a beat or two.

I am writting this to help myself as much as you. LOL! I honestly have been so preoccupied with my "heart" and health lately that I am not a good mother or wife. I also feel horrible and sluggish. I know I NEED the synthroid and that hopefully my holter monitor and echocardiagram are just going to be proof to my delicate psyche that I am MOSTLY healthy with a treatable nondeadly thyroid disorder.

I am hoping the same for you.

If you ever need to talk, just PM me. Maybe we can be of some support to one another!

ashjohnson80
03-08-2007, 04:05 PM
I don't think I've ever posted on here before, but I just got some results and I'm very upset.

I was diagnosed with Hashimoto's in 2001. I also had a goiter and had to have the nuclear medicine tests done on it. I was put on synthroid and I kept having my levels tested once a year and taking my medicine until 2005. I let my prescription run out and gained a lot of weight. I got really terrified of going back to the doctor for some reason.

The past two years I have felt horrible and especially the past couple of months; my hair has been falling out, my skin has had dry patchy areas, I've been very very cold especially my hands and feet, and I've been getting extreme headaches.

I had severe anxiety about going to the doctor. Anxiety and depression went along with my thyroid disease to begin with, but I also stopped taking my antidepressants.

Last Friday I got a really bad migraine, and it lasted all weekend, Sunday night it was the worst pain I had ever been in. I was in tears it was hurting so bad. Also my vision never went back to normal. By Tuesday I finally went to the doctor, I would have done anything to stop the pain.

They took some blood to check my tsh and also I got a shot for the pain. As I was leaving the parking lot (I wasn't driving) I passed out and had a seizure in the car. I was rushed back inside the clinic and passed out again on the bed. They ordered me a CT scan, I went to the hosptial and had the CT scan, it was normal. Was told to just take the lortab that was prescribed to me until my lab work came back and they would know how much thyroid medicine to give me.

About 30 mintues ago I got the results of my thyroid test. They said the results were in the normal range. I have no idea how this is possible. I have every sypthom in the world, I have NO energy, these headaches are about to kill me. I have gained so much weight and can't lose any no matter how hard I try, how much I diet or how much I excercise, and my hair is falling out by the handfuls every time I shower.

Can thyroid disease just go away? I'm so confused. I thought it would come back abnormal, they would put me back on synthroid and I would be better again.

Christine
03-08-2007, 04:57 PM
No, Hashimoto's Disease does not just go away. It is an autoimmune disorder. There are times when your TSH can registers as HYPER and days that it will show you to be HYPO and other times you will be normal. But you are never really normal.

Obviously, you have a great fear of going to the doctor. I am really urging you to make an appointment with an endocrinologist--and one that specializes in thyroid disorders (some are more geared toward diabetes). A general practictioner and/or and emergency room doctor are not equipped to handle Hashimoto's.

I don't mean to scare you but I know someone who had Hashimoto's and she got all screwed up with her medical stuff (she was with Kaiser). She got totally overlooked by the system and she ended up dying as a result of long-term neglect of her thyroid disease. As you get older, it will cause more hardships on your body and more problems. I think you are starting to see this now.

Please call and get an appointment as soon as your can.

bnhasak
03-08-2007, 05:03 PM
I agree....see an endocrinologist.

I have a WONDERFUL general practitioner and even he missed my goiter and hypo issues. There are very specific tests that can tell you exactly what is going on.

It is not something an ER can treat or diagnose out of hand. They are great for an acute attack of something, but not a chronic disease (which Hashimoto's is).

Good luck to you, and try to be brave. You need to more afraid of NOT going and getting treated than of the doc visit. I know, easier said than done. (I have anxiety/panic disorder as well)

ashjohnson80
03-08-2007, 05:07 PM
I'm going to call and get an appointment with the endrocrinologist that I used to see in the morning. I haven't been in so long I don't even know if they will still have me on file. How long do they keep patients records does anyone know?

Fan2CSkr
03-08-2007, 08:51 PM
Do you happen to have the blood results? If not requesting them would be helpful to see what they tested exactly as well as what lab values they are following. Your symptoms are classic hypo.

A Doctor must keep a patients medical records for 7 years. That could vary state to state but that's the norm. Also, depending on the physicians malpractice carrier, requirements can vary.

Please take the advice from the others and make that appointment. You desperately need to be back on thyroid hormone replacement. It is not uncommon to have anxiety when our levels are whacked out. Rationale thinking goes out the window often when in that state. Let us know when your appointment is and keep us updated please. I'll be thinking about you.:hug:

claudia
03-09-2007, 05:11 PM
I participate on a thyroid cancer survivors list and this issue comes up often. One of the moderator/doctors on the list is EXTREMELY vocal about using Armour (he is against it) and feels that any "self-respecting" endocrinologist would not use it. I wish I could find one of his "rants" about it, but I can't. It seems to me that some of his concerns are valid, but I just can't remember them. As it is, I've worked with 3 different endos and NONE of them would touch the stuff.


I have been on Armour for over 2 years now, after going through 2 allergic episodes with both Synthroid and Unithroid (due to the dyes and fillers). All I can say is Thank God for Armour. I actually feel like a normal person again. I love that it is all natural and I am grateful that my endo is a believer. Personally I think it has to do with kickbacks....but that's just my opinion. Christine, I would be grateful if you could give me more info on the moderator/doctor if you can find it.
BTW, I am a follicular cancer survivor.

Mackey Mouse
03-10-2007, 06:20 AM
Hugs to everyone here...

I agree with Christine, Ash please do get yourself to an accredited endocrinologist, maybe one affiliated with a larger hospital, although that can be a nightmare as well as you are more of a number, but they do see more cases and have more experience than the smaller hospitals...

And to Claudia, congrats on the 3 years, two more for you... and you can relax a bit... hugs.

claudia
03-10-2007, 10:35 AM
And to Claudia, congrats on the 3 years, two more for you... and you can relax a bit... hugs.


My oncologist said she is going to let me skip this year for treatment (thyrogen shots and scans) since my last 3 were clean. She said she will only do the blood test for the Serum Thyroglobulin and antibodies. If that comes back "normal", I will get to skip this year. While I am excited about the thought of not having to do that lousy low iodine diet, I must admit I am a little nervous about skipping. I think what scares me most about this cancer is that they say it shows up sometimes after 15 years or more. I'm sorry but I don't know your history...was it cancer for you as well?

Christine
03-10-2007, 11:11 AM
I have been on Armour for over 2 years now, after going through 2 allergic episodes with both Synthroid and Unithroid (due to the dyes and fillers). All I can say is Thank God for Armour. I actually feel like a normal person again. I love that it is all natural and I am grateful that my endo is a believer. Personally I think it has to do with kickbacks....but that's just my opinion. Christine, I would be grateful if you could give me more info on the moderator/doctor if you can find it.
BTW, I am a follicular cancer survivor.

Claudia, I PM'd you.

SillyMe
03-11-2007, 09:41 AM
Is weight gain/loss always a symptom of thyroid disorders? I've been having problems for a year now. Thought is was reflux. Then was diagnosed with biliary dyskinesia, but the docs are on the fence about having my gallbladder removed. This all started with a lump in the throat feeling last year, then pain by my shoulderblade.

Anyway, I read somewhere on another thread that leg aches is a symptom of thyroid disease. I've been having terrible leg aches for quite awhile. They feel so fatigued, like I'm getting the flu.

I haven't lost weight, nor gained. I was always underweight before having my kids, but am comfortable at the weight I'm at right now. When I do lose weight, I have a really hard time gaining it back. Always have had that problem. Plus I'm always cold. I've been that way my whole life, too.

I'm so tired of feeling like crap all the time. I just wish they'd figure out what the problem is. When I first started having problems last year, my doc ran routine blood tests. Would he have tested for this?

lisajl
03-11-2007, 10:39 AM
Hey! I just found you people...my people! LOL!!
I am hyperthryoid. Was diagnosed in 2002, been on meds ever since..can't seem to lose weight. But, at least my numbers are within normal range.
My sister can't seem to get hers right.
She is on other meds for HBP and High cholesterol, could that be affecting it?

Lisa

Fan2CSkr
03-11-2007, 08:09 PM
Hey! I just found you people...my people! LOL!!
I am hyperthryoid. Was diagnosed in 2002, been on meds ever since..can't seem to lose weight. But, at least my numbers are within normal range.
My sister can't seem to get hers right.
She is on other meds for HBP and High cholesterol, could that be affecting it?

Lisa

I was hyperthyroid for years too until recently when I had a TT. At first I lost weight but soon after my appetite was so HUGE that I gained a bit and then once I was regulated with tapazole I gained then gained some more. YUCK!:mad: Since the TT a few pounds have come off but I would love to see more! Do you have graves? Your sister is hyper too? Sometimes some of us just cant regulate on antithyroid meds. Me included. Is she on Tapazole or PTU? Has she tried both? Glad you found us! :hug:

lisajl
03-11-2007, 08:46 PM
I was hyperthyroid for years too until recently when I had a TT. At first I lost weight but soon after my appetite was so HUGE that I gained a bit and then once I was regulated with tapazole I gained then gained some more. YUCK!:mad: Since the TT a few pounds have come off but I would love to see more! Do you have graves? Your sister is hyper too? Sometimes some of us just cant regulate on antithyroid meds. Me included. Is she on Tapazole or PTU? Has she tried both? Glad you found us! :hug:

Oh Geez..it's been a long week...I am HYPOthyroid. Not enough...
Sorry...have been working more hours, son being picked on in school, youngest son, 9 just starting Lacrosse.
Ok...need more thyroid meds! LOL!!

Fan2CSkr
03-11-2007, 09:32 PM
Oh Geez..it's been a long week...I am HYPOthyroid. Not enough...
Sorry...have been working more hours, son being picked on in school, youngest son, 9 just starting Lacrosse.
Ok...need more thyroid meds! LOL!!

Ahh OK! Scratch my post minus the :hug: Tell the bully to lay off your son too! I hate that.

Christine
03-12-2007, 06:23 AM
Is weight gain/loss always a symptom of thyroid disorders? I've been having problems for a year now. Thought is was reflux. Then was diagnosed with biliary dyskinesia, but the docs are on the fence about having my gallbladder removed. This all started with a lump in the throat feeling last year, then pain by my shoulderblade.

Anyway, I read somewhere on another thread that leg aches is a symptom of thyroid disease. I've been having terrible leg aches for quite awhile. They feel so fatigued, like I'm getting the flu.

I haven't lost weight, nor gained. I was always underweight before having my kids, but am comfortable at the weight I'm at right now. When I do lose weight, I have a really hard time gaining it back. Always have had that problem. Plus I'm always cold. I've been that way my whole life, too.

I'm so tired of feeling like crap all the time. I just wish they'd figure out what the problem is. When I first started having problems last year, my doc ran routine blood tests. Would he have tested for this?


Weight gain is not necessarily always there. Usually that stems from long-term hypothyroidism.

You should request from your doctor a full "thyroid panel"--this will show all your levels and a thyroid antibody test.

Also, just for good measure you might want to check for iron deficiency (ask for a ferritin test).

Whosemom
04-05-2007, 10:17 PM
OK, I'll apologize now, this is going to be long. :surfweb: I just want to share with people who know what its like, what has been happening with my DD8.

My sweetie has always been the most cheerful, creative, bubbly thing in the world. But slowly, she started fading right before my eyes. She stopped doing ANYTHING and packing on weight. But 1st came the "stopped doing anything". You know, it was so nebulous, I wasn't sure if I was imagining things or it was just "growing up" or what. But finally other people started asking what was wrong with her. Like her dance teacher who has had her since she was 2. This was last spring - the weight gained happened over the summer. Anyway, her birthday was in Oct. and before we went, I sent the dr a two page letter in which I outlined the fact and reasons that I was afraid she was suffering from depression. She's on alot of asthma meds too, and had started a new one in the spring,so I was angling for that to be a side effect and we could just take her off it and try something else.

So, the DH and I both went so I could go out and talk privately to the dr. He had the NERVE to say, "well, its clearly because she is overweight. Someone is teasing her about being heavy. And it is bumming her out. Not enough to treat or anything." I told him NO! She stopped doing anything first, then gained. He said "no, no, I'm sure she'll start crying some day and spill it all out. Find a time the Y isn't busy, so she won't be embarrassed by being in her suit and swim laps with her." I told him that was SOOOO not the issue. My goodness, she runs around in her leotard. Plus, she stopped doing anything and then gained. I'm talking ANYTHING. didn't play out side, didn't color, stopped her favorite creative thing (building tables from scrap wood). MIL lives next door. the other kids would say lets go to grandma's and she'd never go. on and on and on.

Anyhoo - When I wouldn't cave, he said, "I suppose we can do some tests and check her thyroid, but it will just rule it out."

THis visit was 5 days after MIL was diagnosed with a cancerous brain tumor, and was getting yanked around scheduling surgery. It was a week from hell.

So, we go get her blood test. I haven't mentioned that she is reiculously afraid of needles. Two of us held her down. (If you could see me, I'm bawlin just thinking about it). Two days later, the dr calls. He apologized profusely, and thanked me for sticking to my guns. Her TSH was 103. And he wanted an MRI to rule out tumors. Catch that? We're afraid MIL is going to die of a tumor and we are sent to check our baby for one. We just told the girlie they wanted to look in her head. didn't use the T-word.

She did not have a tumor, thank God. But that was oct 18 and we couldn't get into the endo at the children's hospital until the end of Jan!! Its crazy.
Our regular dr started her on 25mcg of the generic synthroid lexo...something. And after 4 days, I started getting my baby back!

all is going well now. so far. but this thread is scaring me to death!

And, now she is seriously overweight and touchy and I don't know how to walk that tughtrope of helping her and not hurting her feelings.

Christine
04-06-2007, 07:16 AM
Whosemom--I'm so sorry to hear about what your DD has been through. Poor thing.

It's good to know that your working toward getting that TSH down. Once you get it stabilized that weight should drop right off. Adults have a harder time, but I think it goes very well in children.

You can get into a "tough" time getting the TSH stable, especially if her thyroid gland is not in total failure. It could still be producing *some* hormone (though I doubt much with that high of a TSH). She could have small bouts of hyperthyroidism if her thyroid produces something here and there. Hopefully nothing major, but moodiness and ravenous appetite would be something to look out for.

Please keep us posted on how she is doing.

Whosemom
04-06-2007, 07:54 AM
Thanks Christine!
After a month on meds, her TSH dropped to 17, and after another 2 months it was down to ??? Hmmm. You know, they didn't say. When we went finally to the specialist, and she saw the 17, she said to double her dose. Then called after 2 days to say the lab work the day of our visit was better and to keep her at 25. (We had some nice behavior the week after that!)

Here's the selfcentered side of it. I feel so guilty! I spent months really getting on her about being a pain to get up in te mornings (like, last half of last school year + the beginning of this year), then come to read - not here but other places - about people losing their jobs over not being able to muster the energy to get up. That and the fact that when I started looking at hypothyroid symptoms I just go "yep, yep, yep." If I had mentioned all those little things, would the dr have caught it? Could she have suffered less? We are a really frugal aldi-shoppin' kind of family, but we've been buying her $9 a bar shea butter soap for 3 winters because her skin gets so dry. So, how long has this been going on? Do thyroids slowly stop working? The weight thing definitely took off this past summer. The kids were watching last springs dance recital tape, and I thought it was a couple years old because she was so much smaller.

I just keep trying to tell myself I'm not a dr and there's no way I could have known.

Then there's the "NO FAIR!!" part. :rolleyes: Like anything is supposed to be fair. LOL at me. Searching for info on this whole thing, its supposed to happen to 30+ yo. Or babies born with a problem. Not 8yo's! This poor kid has cough-varient asthma, which took a year to diagnose. Its not a "turn blue and race to the hospital" kind of thing, but when she's having a bad stretch, it takes weeks to get under control. And she's at the stage where it embarrasses her more than anything. She has a row of medicine to take every day that rivals an old person. And THAT ticks her off. On top of that, if we pass something around, she always gets the worst of it. For instance, a tummy bug just made its rounds. Big sis had 2 bouts of sitting on the pot one evening. Lil Bro threw up once. For her turn, sje threw up every 20 minutes for like 2 hours, and maybe hourly after that for another 4. sigh.

Christine
04-06-2007, 08:13 AM
Please don't beat yourself up over this.

It is hard enough for an adult to get diagnosed. It is very rare to see thyroid failure in a child so it wouldn't surprise me that even your doctor would have passed it off for awhile. Maybe 30 years ago, he would not have. But with all the overweight children these days, it is hard for them not to just look at that aspect of it.

Did you doctor determine what the cause is? I think most cases of thyroid failure are due to Hashimoto's Thyroiditis, which is an autoimmune disorder. It might be important to know if this was the cause because having one autoimmune disorder means you can be at risk for others. Also, if having hypothyroidism can make everything else you get worse. Including her asthma and any colds/viruses/flu you might pick up. So this could explain why she suffers so much worse than your other children.

I understand how you feel, believe me! I've got one child who has NOTHING wrong with her, while my youngest as severe asthma, peanut allergy, egg allergy, environmental allergies, etc. Colds hit him harder than anyone else and he's always got something going on.

I apologize in advance if I don't get back to this thread. In 45 minutes I am leaving to catch a plane to WDW!!!

angel*lady
04-06-2007, 08:48 PM
I just found this thread and don't have time to read much right now. I wanted to subscribe so I don't lose it. I'll be back in a few days to catch up on the reading. Oh, and I am hypothyroid! :wave2:

claudia
04-08-2007, 11:52 AM
Whosemom, please don't beat yourself up about this. I think you are a wonderful mom when you didn't back down when the doctor was poo-pooing your concerns. There is NO way you could have known what was happening to her.
The thyroid thing could have been long coming, hence, the dry skin. How would you know??? Who would think of this in an 8 year old child. But, the fact is you DID something about it and now she is receiving treatment for it. If she is to feel well on her meds at this point, the docs should be looking to get her TSH to 1. Also, they need to find the cause of this...as Christine mention, the Hashi's may very well be the problem. When you find out the cause, you will all feel better about this and will get a treatment plan into place and even though it may take a bit of time to get her meds accurate for her, she WILL feel better. Also, when she is no longer hypo more than likely the weight will just fall off of her and she will arrive at her previous weight....for 2 reasons, her metablolisim will be functioning at a "normal" level and she will feel well and want to be active.
About the "fair" part of illness....everyone is different, we all experience illness differently. That's just who she is and she shouldn't compare herself to any siblings. I have 3 children and each one will get through the cold or flu very differently. One has ADD, one suffers with depression and anxiety and one hasvery severe tree allergies..Just let her know that her body deals with illness it's own way and that it is ok.
Please keep us updated on her. I am a thyroid cancer survivor and have been hypo and hyper. It took several months for the docs to get my meds correct and it is a constant process to keep them that way. The best thing now is that the docs are aware of what is going on, so you will not have to fight anymore to help your daughter. :hug:

Whosemom
04-09-2007, 10:49 AM
thanks claudia (and christine, even if you are having more fun than me:) )

I know, but you know how mommies are ;)

Moosysmom
04-15-2007, 12:32 PM
Found this thread by accident and wanted to subscribe
Me, I'm hypothyroid. When I moved to Florida 3 1/2 years ago, the first doctor I saw thought something was wrong with my thyroid, but I was losing weight so I didn't think so, turns out I have had a thyroid problem for many years and was never tested or treated. I was doing ok until I goofed up my neck and needed prednisone--I'm one of the 1 in a that it goofed up my thyroid. Finally got the dosage right, but then I switched jobs, and had to find a new doctor--I was talking to a co-worker who had her thyroid removed, and I finally felt better--Most of my symptoms were my thyroid, she told me about a book which I've read "living well with hypothyroidims", and I'm guessing that this has been a problem for a very very long time. Now, I'm having a test on my gallbladder tomorrow, with a promise to my doctor that if I have any more stomach pain to report to the hospital immediately, and I'm now a type 2 diabetic. All because I was never tested for my thyroid years ago. I am finally feeling a bit better, joined a gym and am working out 3 days a week, but this just makes me mad. I've got my whole family being tested because this can be hereditary. Oh well, sorry I vented, just nice to know there are other's out there too. Thanks for listening.

LOLA2
04-17-2007, 09:31 AM
I did not read through this whole thead so please bear with me. About 10 years ago my obgyn would say your thyroid feels really big and tell me to get checked out by my doctor. Well my doctor said it felt large to her also.
For 5 years they said this at every visit until after my second child was born, they finally said we should get an ultrasound done. So I got it done and everything came back normal next 4 years same thing, your thyroid feels large. Once again they want me to get an ultrasound. So I do and the result are I have many nodules some are getting bigger since last ultrasound but nothing they think is cancer. Said I should recheck in 5 years again. I started complaining at this point because I have gained so much weight and throid disorders run in my family. A little backround on me. My uncle has graves disease lost tons of weight and eyes buldged was put on medication to fix problem. My mom had hoshimotos (SP). They put her on meds also.
Now all my life I have weighed a toothpick. I was 5'2 and 102 pound before I became pregnant with first child. Gained 60 pounds lost 30. Then on to second child gained 60 pounds lost 20. So after both my kids weighed about 170. In the last year I have been steadily gaining weight and now am up to 194. This all on a person who never gained an ounce in high school. I can see over the years gaining a little weight, but come on. Something has had to happen in my body that my metabolism is not burning right. I am also iron deficiant they say I gave a low blood count , and thay put me on an iron supplement. I have horrible night sweats waking up soaked. I had horrible heavy periods for the last 5 years (never did in high school) so bad that since I am low iron they put me on BC last year to make my periods lighter.
This has worked.

They have done blood tests to test for thyroid problems and have not found anything. Are they misdiagnosing me or is there really nothing wrong with me? I feel like my body has changed so much and I don't know why.

Christine
04-17-2007, 12:49 PM
They have done blood tests to test for thyroid problems and have not found anything. Are they misdiagnosing me or is there really nothing wrong with me? I feel like my body has changed so much and I don't know why.

It would be hard to say without knowing exactly what thyroid tests they have done on you. Usually having a TSH is not enough. You need to have T3 and T4 checked. Also with your family history of thyroid autoimmune disorders, you need to have a thyroid antibodies test. If all that is normal (and not borderline normal), and you have that done a couple of times and it is normal, then you can be pretty sure it isn't your thyroid.

Many of the symptoms you describe happen to people without thyroid issues.

I know I was 5'7" in high school and weighed 100 lbs. By the time I was in my mid-20s (and no children) I had put on 30 lbs. I think some of us, when younger, just run a high metabolism and it is natural for it to slow down. Couple that with having some children and retaining some pounds from that and it doesn't ALWAYS equal a thyroid problem.

Your iron deficiency (I have this too) can give you lots of problems and odd symptoms.

I guess my advice would be to go to an endocrinologist and have them run the proper thyroid tests a few times (to rule out thyroiditis).

Whosemom
04-19-2007, 02:58 PM
Hello anti-thyroid buddies. I have to say, I wish it was me instead of my kid. Then I could say, "man, I need to do something different." The kid denies any connection, but has had 3 really bad mornings. From outside the affected body, I say "hmmm, is this a wacky level or a lazy kid?" I'm afraid she learned some bad habits. So, even though I'm not sure, I"m trying some behavior mod stuff. (rewards and punishments based on a.m. behavior)

How's everyone else holding out these days?

Christine
04-22-2007, 05:20 PM
How's everyone else holding out these days?

Doing good with a TSH of .70. Wish I could get my iron levels up though!

Whosemom
04-23-2007, 01:08 PM
What's up with your iron? We need energy!!

Christine
04-24-2007, 07:45 AM
What's up with your iron? We need energy!!

I wish I knew???:confused3

Whosemom
04-25-2007, 10:06 PM
Well, go out and lick a rusty post or something. :thumbsup2 wouldn't it be nice if it were that easy?

Whosemom
05-07-2007, 11:13 PM
We had sweatpea's 4 month check up today. Her TSH was up to 6.43, and her T4 is holding around 1.2. So they raised her dose from 25 to 37.5 micrograms.

She did gain 2 pounds since a drs appt 3 weeks ago. I was dissappointed by that. I've been working to change her diet and keep her moving, but its not doing any good.

We saw the nurse practitioner instead of the doctor today. Why is it that they can be so much more personable and helpful than doctors? I'm sure their schedules are just as packed.

hercamore
05-08-2007, 10:46 AM
Christine,

I have also just been diagnosed as being anemic. Why, since I'm menopausal. I am so confused. I eat well, cerreal is fortified with iron supposedly.

Diagnosed with Hashimoto's 3 years ago.

Now I've got to worry about iron tablets interfering with my Syntyroid.

herc.

djblu883
05-08-2007, 06:03 PM
You may be a blessing to me! I have been living with hypo for over a decade and going up and down...with my job I've had little luck with getting it in balance( I travel for work) and I actually had a doc tell me once "I think you have cancer" then no one contacted me. After 2 weeks I called and demanded my results be sent to me so I could have them read elsewhere only to find out it was once again... my thyroid!!! I've finally found a doctor who demands I be tested regularly and after todays test they called and said instead of every 2 months he wants me to be tested once a month so we can get it under control!and no more generics!!! I have been so sick and depressed...overweight despite my constant dieting and I work sooooooo very physically hard that I should be skin and bones instead of lard...I told one doctor my eating habits and he actually had the nerve to roll his eyes as if I was lying!! Needless to say I didn't go back to him...thanks for beginning this thread and my prayers are with all of you!!!

rpbert1
05-14-2007, 03:17 PM
I have ,had Radio Iodine treatment about 2 years ago, everything has been fine , but over the last couple of days my Thyroid glan on the left hand side has been sore to touch, anyone have this experience. Do not want to run to the doctor for something so minor , anyone give me advice

Christine
05-15-2007, 07:39 AM
I have ,had Radio Iodine treatment about 2 years ago, everything has been fine , but over the last couple of days my Thyroid glan on the left hand side has been sore to touch, anyone have this experience. Do not want to run to the doctor for something so minor , anyone give me advice

Did you have treatment for Grave's disease. Is that why you had Radioactive Iodine. Or did you have thyroid cancer?

rpbert1
05-15-2007, 03:27 PM
No i had Hyper thyroid and could not get it under control , with the different treatments, soRadioactive iodine was a last resort, i now take Thyroxin to supplement my thyroid

Whosemom
05-16-2007, 12:24 PM
rpbert1, I'm no expert on this thyroid thing, but I think in general, if something is causing you concern its best to see the dr. Especially on this rollercoaster.

Did anyone else go through this as a kid, or watch their kid go through it? My DD is driving me nuts, and I don't know how much is "being 8" and how much is her body/mind/mood adjusting to the changing levels. I have read that kids behavior can be whacked while they adjust. But, hey. I can't let her just get away with a nasty attitude and say "its the thyroid meds" because by the time she does adjust, she'll have learnd bad habits. right? Do you find it hard to be pleasant in the weeks following a med change?:confused3

Christine
05-16-2007, 03:50 PM
Do you find it hard to be pleasant in the weeks following a med change?:confused3

I haven't had a dosage change in many years, so I can hardly remember. But some people are very sensitive to it and get panicky and more of a feeling of anxiety. Some people also get irritability. This probably lasts for about 2-3 weeks until it evens out.

rie'smom
05-16-2007, 04:01 PM
I'm sure that most of you know this but the cruciferous veggies: broccoli,cauliflower,Brussel sprouts,and cabbage interfere with thyroid function.If you're hypo-like me- avoid these or eat sparingly.

Whosemom
05-20-2007, 09:37 PM
Well, if I can get my 8 yo to stop eating brussel sprouts, all will be well. TEEhee. :lmao: The nurse practitioner just told us soy was awful, too.

So, what about this. Since sweetpea's dosage change, I have to cut her pills in half. Well, I cut a months worth, because getting her own meds in the morning makes her feel at least a little control. And I didn't do a great job, so somedays she will have more and some less. By months end it will average out, but daily will be off. Is that going to be a problem, do you think? Next month, I'm going one at a time because then each two days will avg out. I just wasn't thinking.

Christine
05-21-2007, 07:06 AM
So, what about this. Since sweetpea's dosage change, I have to cut her pills in half. Well, I cut a months worth, because getting her own meds in the morning makes her feel at least a little control. And I didn't do a great job, so somedays she will have more and some less. By months end it will average out, but daily will be off. Is that going to be a problem, do you think? Next month, I'm going one at a time because then each two days will avg out. I just wasn't thinking.

It will be fine. Thyroid hormone has a very long half-life so you can get away with stuff like this. If she were taking one of the short-acting meds (like Cytomel), I would say no.

I have to split one of my pills once a week so I know what you're saying. It's fine.

Notatourist
05-21-2007, 01:24 PM
I participate on a thyroid cancer survivors list and this issue comes up often. One of the moderator/doctors on the list is EXTREMELY vocal about using Armour (he is against it) and feels that any "self-respecting" endocrinologist would not use it. I wish I could find one of his "rants" about it, but I can't. It seems to me that some of his concerns are valid, but I just can't remember them. As it is, I've worked with 3 different endos and NONE of them would touch the stuff.

I'm quite the opposite, I'm one of the folks allergic to something in the fillers they put in Levoxcyl. I wound up passing out, having heart issues, and all the other fun things that happen with this kind of allergy. In three days of Synthroid, I was sane, able to sleep and haven't passed out in a year and a half.

Notatourist
05-21-2007, 01:27 PM
You may be a blessing to me! I have been living with hypo for over a decade and going up and down...with my job I've had little luck with getting it in balance( I travel for work) and I actually had a doc tell me once "I think you have cancer" then no one contacted me. After 2 weeks I called and demanded my results be sent to me so I could have them read elsewhere only to find out it was once again... my thyroid!!! I've finally found a doctor who demands I be tested regularly and after todays test they called and said instead of every 2 months he wants me to be tested once a month so we can get it under control!and no more generics!!! I have been so sick and depressed...overweight despite my constant dieting and I work sooooooo very physically hard that I should be skin and bones instead of lard...I told one doctor my eating habits and he actually had the nerve to roll his eyes as if I was lying!! Needless to say I didn't go back to him...thanks for beginning this thread and my prayers are with all of you!!!


Generic Thyroid medication almost killed me. From now on, no matter what doc you go to, as for the following words to be put on your prescripton...Despence as Written. They by law then have to give you the brand name of the drug. When it comes to thyroid meds, you do this. It's your LIFE you're talking about here.

Notatourist
05-21-2007, 01:33 PM
Thank you Christine....

For this thread. My short form of the long story. Diagnosed with hypo about five years ago. Was on Levoxyl for it for a while, went for a thyroid biopsy when dr prescribed it in 2003. In 04, at my appointment, discovered that the hospital didn't send my results to him.

They were POSITIVE for Papillary Carcinoma.

After that, scheduled thyroidectomy, called attorney and had the bugger out in March of 04. was dropped by doc the next month, went to new endo who kept me on levoxyl. Started passing out, having horrendous anemic episodes, and.....heart issues. Turns out that a national branch was filling my thyroid meds generically, I was allergic to something in the generic. I didn't find that out until dropping old endo for new endo.

My new endo rocks. My levels are high, but regulated. I'm just having issues with the parathyroids...my calicum goes up and down.

If you guys have questions, or need help, holler.

I have been there and offically done that.

Christine
05-22-2007, 12:57 PM
Thank you Christine....

For this thread. My short form of the long story. Diagnosed with hypo about five years ago. Was on Levoxyl for it for a while, went for a thyroid biopsy when dr prescribed it in 2003. In 04, at my appointment, discovered that the hospital didn't send my results to him.

They were POSITIVE for Papillary Carcinoma.

After that, scheduled thyroidectomy, called attorney and had the bugger out in March of 04. was dropped by doc the next month, went to new endo who kept me on levoxyl. Started passing out, having horrendous anemic episodes, and.....heart issues. Turns out that a national branch was filling my thyroid meds generically, I was allergic to something in the generic. I didn't find that out until dropping old endo for new endo.

My new endo rocks. My levels are high, but regulated. I'm just having issues with the parathyroids...my calicum goes up and down.

If you guys have questions, or need help, holler.

I have been there and offically done that.

Interesting about the meds. Did you find out what you were allergic to?

I am having a similar problem with ibuprofen tablets and now Feosol (iron) tablets. First thought I had an ibuprofen allergy but recently had the same response to Feosol. Both have a coating and I'm trying to narrow down the offending ingredient but not having much luck.

Notatourist
05-22-2007, 07:19 PM
I'm sorry, I don't know. There's limited evidence to the contrary that this medication is causing this stuff to happen. Most endos refuse to believe it, my former endo said it was me and not the med. Exit old endo. New endo was open minded and well I became!

Who else has the anemia problems?

Christine
05-23-2007, 07:11 AM
Who else has the anemia problems?

Just me, as far as I know. Did you find a cause for your anemia? I've had all the tests: celiac, endoscopy, colonoscopy, etc. Have a few ideas but no real firm cause.

Notatourist
05-23-2007, 05:16 PM
Just me, as far as I know. Did you find a cause for your anemia? I've had all the tests: celiac, endoscopy, colonoscopy, etc. Have a few ideas but no real firm cause.

My endo stated...it's the drugs, they leech the iron from your blood.

Ah, the joys of Synthroid....:(

hercamore
05-23-2007, 09:04 PM
As I stated in a previous post, I have Hashimoto's and I am anemic according to my last checkup a few weeks ago.

Vitamin B12 deficiency can cause anemia in Hashimotos' patients, so I'm gonna have that test done next month.

In the meantime, I'm chowing down iron. Joy.

herc

Notatourist
05-23-2007, 09:21 PM
Always take iron with food. That's my one most important tip of the day.

Christine
05-24-2007, 07:51 AM
My endo stated...it's the drugs, they leech the iron from your blood.

Ah, the joys of Synthroid....:(


That's funny because when I asked this question on the thyroid cancer survivor's list, hardly anyone was having problems with iron deficiency--in fact, out of several hundred people, no one really had an issue at all with this. I wonder if this is really true? I know that iron can interfere with absorption of Synthroid, but I've never heard that Synthroid can affect iron stores.

Christine
05-24-2007, 07:52 AM
As I stated in a previous post, I have Hashimoto's and I am anemic according to my last checkup a few weeks ago.

Vitamin B12 deficiency can cause anemia in Hashimotos' patients, so I'm gonna have that test done next month.

In the meantime, I'm chowing down iron. Joy.

herc

So do you have iron deficiency are B12 deficiency? You know it's dangerous to take iron if you don't need it.

Whosemom
05-24-2007, 02:55 PM
I'm sorry to interupt ffrom out of left field. I have read about too much iron being bad as well - so be careful out there!

We have had 3 incidents in 3 days with DD totally flipping out. This is a week after a med change. She hit the ceiling, refusing to follow simple directions, screaming, hitting, throwing things at me. We sent her to her room and she just wailed for an hour, and we heard some throwing stuff around, but not to the point of hurting herself. I'm not sure I can take this, or she can. I mean, she's growing and so increaing doses at check ups will be the norm, I assume. Maybe I'll take matters in my own hands next time and go up half what they say for a week or two and then on up. Not really, I'd ask. Here's to my sanity! Should this settle soon? I know Christine says she hasn't had changes in a while, but did anyone one else have problems with changes? At least so far she hasn't gotten in MUCH trouble at school. sigh

Notatourist
05-25-2007, 04:22 AM
Before they yanked it, I was diagnosed with Hashimoto's, so...it might be from that that I am anemic.

Hmmm...time for a little more research.

Chris

hercamore
05-25-2007, 09:26 AM
HI,

Yes, I know too much iron is bad. I do have an iron deficiency.... .8 I believe the level was a couple weeks ago. I really detest taking those iron supplements.

I will be rechecked next month.

herc.

Christine
05-25-2007, 09:32 AM
HI,

Yes, I know too much iron is bad. I do have an iron deficiency.... .8 I believe the level was a couple weeks ago. I really detest taking those iron supplements.

I will be rechecked next month.

herc.


My level was a 5 last check. I sure hope it goes up. I'm afraid my doc is going to send me to a hematologist for infusions. I don't want that.

hercamore
05-25-2007, 01:56 PM
Christine, i'm sorry your iron level is so low. I was down to that level two years ago when I had a huge fibroid issue before my hysterectomy. I was much more tired then than I am now.

It's so frustrating to keep dealing with this low iron issue..


herc.

Fan2CSkr
05-25-2007, 07:42 PM
Interesting article - Iron, Anemia and Hypothyroidism
http://www.thyroid-info.com/articles/iron.htm

A large body of thyroid patients have been surprised to discover that being hypothyroid also results in having low Ferritin, or storage iron. Ferritin is an iron-storage protein. So when Ferritin is measured via a blood test, it is basically measuring your storage iron, or the iron you have tucked away for future use. You can have “normal” iron serum levels, yet a low Ferritin.

Iron-deficiency anemia due to silent celiac sprue - Connection autoimmune thyroid disorders
http://thyroid.about.com/cs/latestresearch/a/celiac.htm

ckirkseyblue
05-27-2007, 08:07 AM
Can anyone give me more insight on what it means to have a goiter on your thyroid. I found out last year that I have one. My doctor has told me that there is nothing to do but watch it. If it gets bigger and more bothersome (hard time swallowing, lots of coughing fits) they will remove it, which in turn means removing part of the thyroid an being on thyroid medicine for the rest of my life.

Is it worth having it removed do you think. I am hypo right now (I know I was hyper when I look back on it when I had my 2 baby girl). I have trouble with fatigue, I just can't seem to get motivated. I am gaining weight and having sugar cravings. I do not feel like myself at all and it is effecting me emotionally also. I have 3 daughters and after my 3 baby girl I started with the hypo. Its frustrating because you want to get up in the morning work out eat right and lose that weight but your body will not let you.

Anywho, I would be so grateful to anyone who could give me some advice on dealing with this, because at the moment I am not doing anything but living with it. Should I get the goiter taken out, get a second opinion ( I worry about it being cancerous) my doctor did not do a biobsy on the goiter.

I am so grateful to have found this thread.

Thank you,

Christina

claudia
05-27-2007, 08:51 AM
Can anyone give me more insight on what it means to have a goiter on your thyroid. I found out last year that I have one. My doctor has told me that there is nothing to do but watch it. If it gets bigger and more bothersome (hard time swallowing, lots of coughing fits) they will remove it, which in turn means removing part of the thyroid an being on thyroid medicine for the rest of my life.

Is it worth having it removed do you think. I am hypo right now (I know I was hyper when I look back on it when I had my 2 baby girl). I have trouble with fatigue, I just can't seem to get motivated. I am gaining weight and having sugar cravings. I do not feel like myself at all and it is effecting me emotionally also. I have 3 daughters and after my 3 baby girl I started with the hypo. Its frustrating because you want to get up in the morning work out eat right and lose that weight but your body will not let you.

Anywho, I would be so grateful to anyone who could give me some advice on dealing with this, because at the moment I am not doing anything but living with it. Should I get the goiter taken out, get a second opinion ( I worry about it being cancerous) my doctor did not do a biobsy on the goiter.

I am so grateful to have found this thread.

Thank you,

Christina

here is a site that you will find a ton of info on...I hope this will be helpful for you.
www.endocrineweb.com

Notatourist
05-27-2007, 08:33 PM
Christina,

Are you on med right now? Have you asked your endo what they think is happening? Goiter is a base term for enlarged gland. Do you have nodules? Have you heard the word "hot" mentioned with them?

Since you're just being told this is happening, the exhaustion, the desire to do anything but sleep, and the hair falling out (that's coming, be aware) is normal for a hypo diagnosis. Having three kids doesn't help the exhaustion level, but, it's something to know, you're having normal symptoms.

More than likely your endo will be monitoring your thyroid to see if it's growing, and if it is, surgery will be indicated. With me, it was about two years and after a biopsy, it was determined it was time to come out. If you do go in for a biopsy, make certain that they contact you in a number of days, even if it's a good result. HAVE THEM CALL YOU!!!

I wasn't called and found out three months later that I was positive.

Absorb what Claudia sent you (killer site btw) and don't worry. You have plenty of folks here to help.

frdeb1999
10-18-2007, 11:26 AM
I am so glad that I found this thread. My husband had a ultrasound and blood tests that indicated he should have a biopsy. We had that done today. I am so tired of waiting to hear if it is or isnt cancer. They seem to love to make you wait. We found out that he had nodules over a month ago. Then had to wait yet once again to get a appt for a biopsy. He has two brothers who have thyroid cancer so we are already at a point where we have accepted that it is probably going to come back that way. We have been going rounds with two different drs on issue's. They are the only 2 in the immediate area. We both felt like the biopsy was a waste of time and pain and that everything should have been removed due to history. They both insisted that he should have it. Everything I read says that there is a huge probability that it will come back inconclusive and that we will have to proceed to the next step anyhow. Why don't drs want to listen? I feel like we are wasting time, but who knows I may be wrong. We have been told repeatedly that this is very curable. But still cancer in any form just scares me. Would love to hear from others who have had same issue's. Am I crazy or should we be looking for another dr who will help us more. From what I've read on this thread they are'nt easy to find. Sorry I have been so long winded. Just very aggrevated with everything and hate being told I have to just sit and wait when I think things should be moving in a different direction.

claudia
10-18-2007, 12:39 PM
I am so glad that I found this thread. My husband had a ultrasound and blood tests that indicated he should have a biopsy. We had that done today. I am so tired of waiting to hear if it is or isnt cancer. They seem to love to make you wait. We found out that he had nodules over a month ago. Then had to wait yet once again to get a appt for a biopsy. He has two brothers who have thyroid cancer so we are already at a point where we have accepted that it is probably going to come back that way. We have been going rounds with two different drs on issue's. They are the only 2 in the immediate area. We both felt like the biopsy was a waste of time and pain and that everything should have been removed due to history. They both insisted that he should have it. Everything I read says that there is a huge probability that it will come back inconclusive and that we will have to proceed to the next step anyhow. Why don't drs want to listen? I feel like we are wasting time, but who knows I may be wrong. We have been told repeatedly that this is very curable. But still cancer in any form just scares me. Would love to hear from others who have had same issue's. Am I crazy or should we be looking for another dr who will help us more. From what I've read on this thread they are'nt easy to find. Sorry I have been so long winded. Just very aggrevated with everything and hate being told I have to just sit and wait when I think things should be moving in a different direction.

You are correct about the biopsy, many come back inconclusive, but better to try to find that out first then remove a healthy thyroid for no reason. My biopsy did come back positive (follicular), so the only option I was left with was to remove the side with the cancer and leave the other or remove it all....and my choice was to remove it all because there is no way I wanted to go through the same thing twice. What type of thyroid cancer did his brothers have? My advice is that it sounds like your doctors are proceding as most doctors would, so I would give them more time. You should have the biopsy results in a week possibly 10 days. Hopefully it will come back negative. They are telling you the truth that most thyroid cancers are highly curable.
I had a 2.5 cm tumor and had a total thyroidectomy. I have been cancer free now for 4 years.
Any questions that you have I will be happy to answer to the best of my ability...you can PM if you would like.

frdeb1999
10-18-2007, 02:00 PM
They also had Follicular and his 2 masses are 1.2 or under. His one brother has been a survived this for 11 yrs. And other will be at the 2 yr mark. I guess I'm just aggrevated with all the waiting. The waiting and not knowing I think is almost worse then knowing for sure. At least you can deal with it when you have that much. Thank you for letting me vent. I hate to burden him even more when he has enough on his mind to begin with. And thank you also, I may PM you as we get more info. I like to ask questions and know facts. It's nice knowing there are people out there who are or have gone through the same things and you can talk to about it.

claudia
10-18-2007, 02:16 PM
Well it is good that his nodules are 1.2 cm. The smaller the better! I understand how difficult it is to wait, especially when there is a possibility that it may be cancer. Did the doctor at least give you a time frame as to when the biopsy results will be back? Once the results are back things will move much quicker for you then. Does your endo have a surgeon that they are recommending? One thing that you want to find out is that they have done many, many thyroid surgerys. Here is a wonderful site for you so that you can do some reading that will provide you with many answers to your questions. www.endocrineweb.com.

frdeb1999
10-18-2007, 04:17 PM
They said 3-4 days. But since the weekend will be in there we're expecting the high end of it. We have already consulted with the surgeon we will be using. He has a very good reputation and has done alot of these. Thank you for the link to the site! It's going to be one long weekend, but hopefully at the end we'll know something.

onesadduck
10-18-2007, 04:38 PM
I had my psychiatrist order a thyroid test- and got it done the same day. The next day I called in for the results. All that the nurse could tell me was 7.4. She couldn't even tell me 7.4 what!? A week later, a doctor called back (they assigned her to be my Primary care physician for nor. cal, apparently). She said I had hypothyroidism and put me on 25 mg of Levothroid and said they'd check again in two months.

That's it. I have never seen her in person. Only one test. Should I see her in person? Do I need a physical examination? She told me it was unnecessary, but I don't feel right being medicated based on one number with no other examination. She asked if I had any other questions but it went so fast that I couldn't think of anything (I can never think on my feet). I have a family history of Synthroid not working- two different aunts (on both sides of the family) needed Armour Thyroid. Can they switch me before the second blood test?

Thanks in advance,
Alisa

claudia
10-18-2007, 05:36 PM
I had my psychiatrist order a thyroid test- and got it done the same day. The next day I called in for the results. All that the nurse could tell me was 7.4. She couldn't even tell me 7.4 what!? A week later, a doctor called back (they assigned her to be my Primary care physician for nor. cal, apparently). She said I had hypothyroidism and put me on 25 mg of Levothroid and said they'd check again in two months.

That's it. I have never seen her in person. Only one test. Should I see her in person? Do I need a physical examination? She told me it was unnecessary, but I don't feel right being medicated based on one number with no other examination. She asked if I had any other questions but it went so fast that I couldn't think of anything (I can never think on my feet). I have a family history of Synthroid not working- two different aunts (on both sides of the family) needed Armour Thyroid. Can they switch me before the second blood test?

Thanks in advance,
Alisa

The test was probably to measure your TSH levels and a 7.4 would indicated that you are hypo. You can ask her for a copy of the labs and see what values they use, but usually anything over 3 would indicate some problem. Next thing you should do is get yourself to an endocronologist and have an exam and testing. Synthroid caused problems with me as I was allergic to the dyes and fillers. I am currently taking Armour and I love it. And yes, you can switch your meds anytime you need to.....just get that appointment with the endo, you really need to find out why your are hypo and let someone who specializes in this treat you.

disneyauntieX11
10-23-2007, 06:42 PM
They said 3-4 days. But since the weekend will be in there we're expecting the high end of it. We have already consulted with the surgeon we will be using. He has a very good reputation and has done alot of these. Thank you for the link to the site! It's going to be one long weekend, but hopefully at the end we'll know something.

I am so sorry you are going through this. It is hard time waiting for the results. I had both Folicular and Papillary Thyroid Cancer in 1999.
One thing that really helped me keep my sanity was an organization called
THYCA (Thyroid Cancer Survivors Assocation). They have great e-mail support groups. I was able to ask questions that I needed answered and this was from people who went through the same thing.

There web site is www dot thyca dot org

Gail

frdeb1999
10-23-2007, 07:23 PM
Thank you. I did'nt realize that you could end up with both kinds. It is nice hearing about people though who have it in the past tense. I have been looking into groups where I can talk to people. He just does'nt see the need to. I guess it's a man thing! It's aggrevating as they said it would be 3-4 days and it's now been 5 and still nothing. We called today and they said tommorow, but more likely Thursday as they don't count weekend days in that total. That would have been wonderful to know ahead of time. Hopefully we can move foreward in this shortly...because the waiting is just horrid!

frdeb1999
10-24-2007, 07:31 AM
Just found out that it is cancer. But the dr said the abnormal cell count was extremely low and we had caught it extremely early and that they were mostly polyps. He also said that if there was'nt the strong family history they would reccomend nothing other then medication to shrink and then to wait and watch. But since the history is there he wants it all taken out and says that all should be well then. Keep us in your thoughts and prayers. But under the circumstances this is way better then we were expecting. Best thing is at least we now know something and can deal with it.

disneyauntieX11
10-24-2007, 08:40 PM
Just found out that it is cancer. But the dr said the abnormal cell count was extremely low and we had caught it extremely early and that they were mostly polyps. He also said that if there was'nt the strong family history they would reccomend nothing other then medication to shrink and then to wait and watch. But since the history is there he wants it all taken out and says that all should be well then. Keep us in your thoughts and prayers. But under the circumstances this is way better then we were expecting. Best thing is at least we now know something and can deal with it.

YOu definately want to go to the ThyCa Website and join the e-mail support group list. It is a Man Thing your husband doesn't want to do it! I am dealing with the same thing with my father with Prostate Cancer.

Also they really can't tell anything til after they remove the Thyroid and the final pathology report is back. The Thyca people on the e-mail support group list are great! The main thing you want is a surgeon that does lots of thyroidectomies.

If you have questions about the surgery feel free to PM me


Gail

frdeb1999
10-28-2007, 11:39 AM
Surgery is set for November 15. The surgeon told us it's the start of Follicular. He's telling us that they can tell it's the onset due to how the cells looked when they were tested? Is this a know fact? Everything I read says if the samples are good enough it can tell them quite a bit. The left side was also biopsied and he said there is nothing cancerous on that side. And he would like to leave that intact and only remove the RT side. Although he said they will none the less have a sample done on that and lymph nodes while removing the RT side so that he can be positive it does'nt all need to come out. We meet with him again this week and we still think the whole thing should come out regardless of family history. He said we would discuss it more this week after he looks into all the stuff we gave him on his brothers. In some ways I agree with the dr and if there isn't a problem with the Lft side it should'nt come out due to possible complications and such. On the other hand I think it's also a gamble due to such a high family history with this to leave any of it in. We have spoke to two drs now and they both are in agreement. The one here that we have been going to mainly is extremely good in this field and highly recommended. So it's a decision for us to go to a 3rd to push the issue or decide if they are both right and we should do it this way. Either way we now know something and that at least is good. Any advice would be wonderful.

claudia
10-28-2007, 12:40 PM
I had follicular cancer on the left side of my thyroid and decided to have the entire thyroid removed, with my surgeon suggesting that was the best way to go. (She told me that this was normal procedure for follicular cancer) Personally for me, I would just not want to have to go through another surgery and worrying that the cancer could spread there was something I didn't want to deal with. Here is a passage from endocrineweb.com that I thought you might want to read:
Editorial Note from Dr. Norman: Virtually all patients with follicular thyroid cancer should be treated with a total thyroidectomy. If your surgeon says that he/she is going to take out all of the thyroid gland on the side of the neck that has the cancer and "some or most" of the thyroid gland on the other side... then find another surgeon. The only reason for a surgeon to not remove the entire thyroid is because they are afraid of injuring the nerve to the voice box... This usually means that they don't do this operation enough. If your surgeon is afraid of doing the complete operation because they may injure something, then think twice about finding another surgeon that does this operation more frequently. Do not let a surgeon remove your thyroid if they don't do this operation very frequently.

This is from the American Cancer Society:
Thyroidectomy

This operation removes all (total thyroidectomy), nearly all (near-total thyroidectomy) or most (subtotal thyroidectomy) of the thyroid gland. It is the most common surgery for thyroid cancer. It is often used even for differentiated thyroid cancers because papillary thyroid cancer tends to be present in more than one part of the thyroid gland and because follicular cancer is more aggressive. They also state that:

But having some thyroid left can interfere with some tests to look for cancer recurrence after treatment, such as radioiodine scans.

For me I am glad that I chose the total thyroidectomy. Please do more research online to come to a decision......

disneyauntieX11
10-28-2007, 05:25 PM
Surgery is set for November 15. The surgeon told us it's the start of Follicular. He's telling us that they can tell it's the onset due to how the cells looked when they were tested? Is this a know fact? Everything I read says if the samples are good enough it can tell them quite a bit. The left side was also biopsied and he said there is nothing cancerous on that side. And he would like to leave that intact and only remove the RT side. Although he said they will none the less have a sample done on that and lymph nodes while removing the RT side so that he can be positive it does'nt all need to come out. We meet with him again this week and we still think the whole thing should come out regardless of family history. He said we would discuss it more this week after he looks into all the stuff we gave him on his brothers. In some ways I agree with the dr and if there isn't a problem with the Lft side it should'nt come out due to possible complications and such. On the other hand I think it's also a gamble due to such a high family history with this to leave any of it in. We have spoke to two drs now and they both are in agreement. The one here that we have been going to mainly is extremely good in this field and highly recommended. So it's a decision for us to go to a 3rd to push the issue or decide if they are both right and we should do it this way. Either way we now know something and that at least is good. Any advice would be wonderful.

http://www.thyroid.org/professionals/publications/guidelines.html

The Link above is the American Thyroid Associations Guidelines for the Treatment of Thyroid Nodules. Page 10 recommends Total Thyroidectomy.

On a personal note I has a supicisous biopsy fo Papillary Carcinoma. The Endo Suggested only half the Thyroid because he thought I might be mad at him if they took out the whole thyroid. My thought is that I would be more made if I had to go back a 2nd time. The Surgeon who had done Many Thyroidectomies says that with Papillary that there would be a 60% Chance it would be on the other side. My diagnosis turned out to be Folicular Variant of Papillary Carcinoma which means the outside of the tumor was Folicular and the inside was Papillary. Folicular is a little more aggressive but treatable. My tumor was only 1.2 cm but it was not encapsulated so I needed to have the Radio Active Iodine Treatment to ablate the rest.

They kept telling me that I had only an 20% chance of the suspicious biopsy being cancer. I hit the jackpot. but I am O.K. now and have been disease free since 2000

You do want surgeon that does allot of thyroidectomies because of vocal cords and parathyroids (these are gland that regulate your Calcium).

Gail

frdeb1999
10-28-2007, 06:22 PM
Thanks for the advice. I already told my husband that we'll be calling tommorow and we're in agreement that if he does'nt want to do a total then we'll be looking for a new surgeon. He comes very recommended and we have researched him. Thing is I think we think he's just not being as aggressive as should be given the family history for one and type for 2. I have been already researching looking for a 3rd opinion just in case. We are completely sure that he can do the surgery and well due to everything we've read and also talked to past patients. Thing is we're not willing to go through this again because he wants to be conservative. And in our case I think it needs to be an aggressive approach. Will let you know.

frdeb1999
11-08-2007, 06:45 AM
Well after much deliberation we have switched surgeons. We found a Endo and we both are very happy with her. Very friendly and highly recommended. She immediately said not to just have the one half out regardless of the finding since the strong family history is there and abnormal biopsy results. We presented this to the original surgeon and he still refused to do a total until after testing the other side in the operating room. He said it made no sense and then got quite upset that we were "guestioning" his abilities and such. So we politely told him to cancel everything and went with another surgeon the Endo had recommended. We went to the app with the new surgeon who had already been briefed by the Endo who said there was no question that it all had to come out. So we are now in the process of getting another date set. Which will hopefully be before christmas. They said it would hopefully be within the month. Will deffinately be happy when it's out and taken care of! Thank you again for all the advice!

newarknut
11-08-2007, 10:17 AM
Hey, I just stumbled upon this thread. I was diagnosed with papillary cancer last year and had a total thyroidectomy. It was only on one side but the whole thing was removed. I had a friend who went through the same thing, only, they took just half out. They had to operate again to remove the other half after test results came back. That would be a bummer. I had the surgery on 9/1/06 and was back in business in a couple days. I took the radioactive iodine treatment in December of '06. The biggest hassle with the RI is the diet that precedes it. Also, if you can take the Thyrogen shots, do it. It will save you from going off your sythroid and being hypo for a while. If your insurance will cover the cost, I highly recommend the shots.

You will be fine. I'm glad you did your research and discovered the need to take out the whole thing the first time! Smart move!!!

Make sure they put you on Synthroid and not the generic version. I guess the generic is not as reliable (dosage wise) as the name brand.

Sincerely,

claudia
11-08-2007, 01:59 PM
Well after much deliberation we have switched surgeons. We found a Endo and we both are very happy with her. Very friendly and highly recommended. She immediately said not to just have the one half out regardless of the finding since the strong family history is there and abnormal biopsy results. We presented this to the original surgeon and he still refused to do a total until after testing the other side in the operating room. He said it made no sense and then got quite upset that we were "guestioning" his abilities and such. So we politely told him to cancel everything and went with another surgeon the Endo had recommended. We went to the app with the new surgeon who had already been briefed by the Endo who said there was no question that it all had to come out. So we are now in the process of getting another date set. Which will hopefully be before christmas. They said it would hopefully be within the month. Will deffinately be happy when it's out and taken care of! Thank you again for all the advice!

I applaud you for advocating for your DH. It can be disastrous when a physician lets his ego get in the way of discussing a patients concerns and questions. I am also glad that you found an endo that you like as she will be playing a very big part in your husbands life from now on. Best wishes to your DH for a speedy recovery. Please keep us posted.

frdeb1999
11-08-2007, 03:11 PM
Thank you Claudia. He was'nt the happiest person while I was insisting on alot of this. As I said earlier he is the type that feels that dr's would'nt do something unless it was the best option. He even at one point insinuated that I was doing this in a effort to save money! I did'nt get upset with him though. I know he's going through alot right now and his emotions are running quite high. And after his Endo told him basically everything I had said and almost in the same order he got teary and told me he was so sorry for saying anything to me. I just reninforced that I am in this with him and that I only want the best. And if that means questioning, and insisting then that is what I'm going to do. We have been married 20 yrs and I don't plan on letting him down now!

frdeb1999
11-14-2007, 01:58 PM
Tommorow is the day for surgery. Due to a last min cancellation he will be able to still have surgery on the day he was origanally scheduled. With the new surgeon which makes us both very happy. He has had a rough weekend though as we found out that his dad has colon cancer and will need to undergo surgery for it. Seems like it all happens to you at one time. Please keep us in your thoughts and prayers and I will update as soon as I can.

Dis1978
11-14-2007, 04:32 PM
I have been on PTU for about 7 years. I take thyroxine with it on a block and replace therapy. My doc wants me to come off it and have the radioactive treatment. I am not keen to have this as I will have to be away from the kids for a couple of weeks. Impossible at present with kids with disablities. Don't know how I am ever going to be able to go for the treatment. Has anyone else been on PTU as long as this? Anyone know of any problems of long term use?
The endo wants me to come off the treatment to see if my thyroid problem has resolved! Last time I tried this I went so hyper I could hardly move due to the palpitations.
Is so annoying when the docs say the levels are fine. My levels are supposedly normal so how come I am exhausted, have bad leg pain, freezing cold and feel so down.


Also I had to take this treatment whilst pregnant and I worry about the effect on my youngest child.

klmall
11-15-2007, 07:11 PM
Just wanted to post about DH who had his thryoid removed successfully yesterday. He had been putting it off for at least two years and his endo and 2 surgeons told him he was heading for potentially serious difficulties unless he set a time which he finally did. Everything went very well considering the thryroid was enormous, pressing on his windpipe, starting to wrap around his vocal cords and one one side, extended back to his spine. All the prior biopsies were negative so DH really wanted to avoid surgery. Now he readily admits how good it feels to have the mass gone and to be able to swallow more easily.

We were so lucky to have an excellent hospital and its staff who made the whole experience very positive for DH who has had only had one quick in/out procedure 20+ years ago. To say he was a basket case would be an understatement! But they had him sitting up, eating and talking 1 hour after surgery. He had to spend the night in the Recovery Room because they wanted to monitor his mild sleep apnea but he got one-on-one attention which really eased my worries. His drains came out this morning and the big Queen Anne bandage comes off tomorrow. He came home this afternoon and continues to amaze me, eating, drinking and talking so easily.

His biopsies will come back Monday, he'll continue his synthroid forever and we hope to close the door on something that he avoided so long (and scared me more than I can ever tell him!). After he spends 10 days at home he should be fine!

I would highly recommend his surgeon and the hospital (Georgetown University, DC) to anyone who needs this surgery. GUH consistently ranks in the top hospitals in the country and we experienced that firsthand. His surgeon has a special, down to earth, calming attitude and I think that was what convinced him to do what he had to do.

Good luck and blessings on all of you with thryoid problems, especially those trying to figure out what to do.

frdeb1999
11-15-2007, 08:00 PM
Sounds like you had a good outcome klmall. My husband had his surgery today and everything went great. He too was in up and around only about 2 hrs post op. He won't be released til tommorow and it's about driving him crazy! He was harrassing the nurses when I left telling them how hungry he was and no Jello! Everything looked good with the frozen sections and like you we won't know 100% til Monday. But we're hoping for the best. We know it's not the end. But just very happy to have it out. Good luck to you! And you and your family will be in my thoughts and prayers.

klmall
11-15-2007, 09:13 PM
frdeb1999 - Isn't it wonderful when you see them fussing and wanting to get back to normal? Yes, his surgeon thought things looked good but as you know we want the proof before we can really let our guard down. On the humorous side, DS at college asked for a picture of DH with his collar on, so I obliged and sent one - Of course, DH hammed it up a bit pretending to be in great pain for his photo op.

And the best of luck to you and yours also. I'll add your DH to my special prayers of thanks tonight and let us know next week.

But you must be so drained too! Now go get some rest!!! :grouphug:


Sounds like you had a good outcome klmall. My husband had his surgery today and everything went great. He too was in up and around only about 2 hrs post op. He won't be released til tommorow and it's about driving him crazy! He was harrassing the nurses when I left telling them how hungry he was and no Jello! Everything looked good with the frozen sections and like you we won't know 100% til Monday. But we're hoping for the best. We know it's not the end. But just very happy to have it out. Good luck to you! And you and your family will be in my thoughts and prayers.

frdeb1999
11-16-2007, 05:29 AM
You are deffinately right. It is absolutely wonderful to see them once again being they're old pain selves! ;) And yes we won't be happy either til we get everything back next week. But am so happy and relieved to just have that portion over with. I about fell into bed last night when I finially wound down enough to get there. Thanks for your thoughts and prayers...you'll be in ours also. And keep me posted! We can compare notes! :grouphug:

Belle62442
11-16-2007, 04:56 PM
I got a call from the Dr. today saying that I had an abnormal thyroid test. He left me instructions to call his nurse for more info. Unfortunately the nurse never called me back so I have to wait until Mon. to get any answers. Based on the symptoms I think I have hypo, so it looks like I might be a lifer on this thread! Is hypothyroidism common in a 22 year old?

frdeb1999
11-17-2007, 09:17 AM
Welcome Belle62442. I wish I could give you some info but I'm quite new to this area myself. I know exactly how you feel though with the dr thing. They did the same thing to us and had us waiting also. This thread and those on it are wonderful. Hope all goes well for you!

frdeb1999
11-26-2007, 07:03 AM
UPDATE....Just wanted to let you all know that my husbands results came back after the whole thyroid was tested and it was all benign! They tested it not once...but twice to make completely sure. I can't even begin to tell you how relieved and happy we were to hear this. We questioned the biopsy results and they told us they were nothing but abnormal cells to begin with and not even enough to count. But since he had such large Goiters they would have had to remove them anyhow with surgery. Makes you wonder. But we had it retested simply because we did'nt believe the frozen section test. We paid for the 2nd pathology lab out of pocket because we were so afraid of it not being true. Needless to say it was a very Happy Thanksgiving. He went on thyroid meds Friday and so far seems to be doing very well. We shall see. And the stitches come out tommorow. Hopefully all will continue to go well. None the less with his family history he will have no choice but to keep watching and making sure regardless. Thank you for all your support through this!

GoHerd1028
11-27-2007, 06:07 PM
This is an Interesting thread.

At the age of 28 I was diagnoxed with Medullary Thyroid carcinoma the rarest form of the disease. After the diagnosis I had genetic testing done that showed I have Multiple Endrocrine Neoplasia (MEN Type 2A) With this syndrome I can develop tumors on other endocrine glands over the course of my life. As it so happens my labs recently came back out of range for the Parathyroid hormones. I blew it off but the doctor took it more seriously than I did. It seems that it is possible I might have a tumor now on the parathyroid gland or on the adrenal gland causing the parathyroid homrones to be elevated. I feel like I have walked this road before and it is not an easy one. My original cancer was found by accident. We were testing some new ultrasound equipment at work and I was the test patient for the neck region...low and behold...there it was and I was not having any sypmtoms. See God does work in mysterious ways. I am glad that I have found this thread and hope that maybe I might be able to be of help to someone else. Feel free to e-mail me GoHerd1028@aol.com

Steve:santa:

traceblue
12-24-2007, 01:11 AM
I have been having thyroid problems since i was 8 years old..i am now 22..

When I was 8, i had a tumor (benign) and half of my thyroid removed..When i was 15, a few more tumors grew back and they removed them and the other half of my thyroid--They then put me on Synthroid. When I was 16, I had scar tissue revision..

Since my surgeries, especially the last 2, my thyroid levels go crazy--Every 6 months or so I have to get my levels changed..i go from being hypo to hyper all of the time.. After this semester, I will be getting some more tests done to see if there are any more tumors in there..i have been having a hard time holding my neck up again and my necks been really sore and ive been having difficulty swallowing...

Its nice to see this thread!


I thought I was going crazy,, I just could not understand. 15 Years ago, I had the first tumor at my thyroid taken out it was benign, 9 years ago I had the other side taken out it was benign. Over the past 1 or so I have had trouble swallowing, my neck is sore when I turn it to far to look at something and when I sleep I have huge amount of pressure in my neck and it is hard to get comfortable.. I figured the doctor would tell me i was nuts that there was nothing there and that it could not grow back.... I guess I was wrong and it does happen.. I will make an appointment...

Your posting has really made me feel like I have not lost it and this is realy
Thanks

Trace

nicdanh
01-05-2008, 08:12 AM
Hi Thyroid friends! I was diagnosed 9 years ago with Hypothyroid with graves diesease. I found out when i was trying to get pregnant with my first child and could not get pregnant. I now have 3 beautiful children and still suffer from the diesease. My endo doctor wants to kill my thyroid, but I have mixed feelings about it.

Michelle

SammieG
01-05-2008, 07:44 PM
does anyone currently have or have you had Pre-tibial myxdema?

I have been hyper (now controlled) with Thyroid eye disease and PTM for 8 years
would love to know if anyone has had any success with any treatments for the PTM

Aunt Flancy
01-10-2008, 01:50 PM
This is an Interesting thread.

At the age of 28 I was diagnoxed with Medullary Thyroid carcinoma the rarest form of the disease. After the diagnosis I had genetic testing done that showed I have Multiple Endrocrine Neoplasia (MEN Type 2A) With this syndrome I can develop tumors on other endocrine glands over the course of my life. As it so happens my labs recently came back out of range for the Parathyroid hormones. I blew it off but the doctor took it more seriously than I did. It seems that it is possible I might have a tumor now on the parathyroid gland or on the adrenal gland causing the parathyroid homrones to be elevated. I feel like I have walked this road before and it is not an easy one. My original cancer was found by accident. We were testing some new ultrasound equipment at work and I was the test patient for the neck region...low and behold...there it was and I was not having any sypmtoms. See God does work in mysterious ways. I am glad that I have found this thread and hope that maybe I might be able to be of help to someone else. Feel free to e-mail me GoHerd1028@aol.com

Steve:santa:


I am a meddie too. I was lucky also and my cancer was found early. I had huge nodules on the right side of my thyroid that were growing rapidly, but all of my thyroid tests and biopsies were normal. They decided to remove the half of my thyroid with the nodules, but during surgery the Dr. decided the other side looked "funny" so he took the whole thing out. They called me five days later and told me I had cancer. I went back four weeks later and had a left modified radical neck dissection. It has been almost two years now and all of my blood work is good. I still go to the oncologist every three months and the enodcrinologist about every two months. I have problems getting my TSH regulated (I take 200mcg Synthroid and 10mcg Cytomel right now) and the endocrinologist has found other problems that I take all kinds of medicine for, but I am so thankful it was found early. I am a single mom of two teenage boys and can't imagine leaving them!

goldcupmom
01-10-2008, 02:04 PM
All you thyroid experts......

Just back from my Dr and an annual physical. She said my thyroid is 'borderline' enlarged. doing bloodwork.

12/7 I went to breast dr. -( due to my sister's breast cancer 3 yrs ago, I go yearly just because) - she noticed an enlarged node under left armpit. Did an ultrasound & said it was normal, just puffy.

I had pneumonia 12/18 when I went in running a 102+ fever, 5 days on Zpak, 12/31 woke up with horrific sore throat on one side, swollen nodes. Nodes still swollen, ,lots of sinus drainage, etc. Starting another round of antibiotics. DD had same, including nodes & now has an enlarged sore spleen.

However, I'm the worlds worst worriwort & now wonder if the glands could be
from the thyroid & it could be cancer. Any input?

thanks much!!

Disneysnel
01-15-2008, 05:17 AM
I just found this thread - couldn't sleep.

As some other posts have said, they have all the symptoms of HYPO as do I and the doctors keep telling me my blood tests are normal! Could it be that MY normal is a little higher than others? I don't get it, I mean EVERY symptom.

My story:
I was diagnosed by my gyno about 17 years ago, he asked what the big lump was in my throat, I thought it was an adam's apple - lol, he told me girls don't have them and sent me to an endo. I felt fine - never had any problems with my weight or anything.

Well, the endo put me on synthroid to "shrink the nodule" ??? and it grew larger so I had to have it removed turns out there were over 50 of them all over my thyroid and they took out the entire thing except for a para. They were all benign but I wonder what causes this?

I grew up in So Cali around lots of orange groves and wonder if maybe the DDT did it?:confused3

Looking at pictures of me when I was like 6 years old you can see a bump in my throat. No one else in my family has ever had this.

I do have a question that no one - including medical professionals has ever been able to answer: If we(those without thyroids) exercise regularly does our metabolism go up like other people's do or are we dependent on that little pill, period?


So glad to have found this thread and it is nice to know that Im not the only one :grouphug: but I am also sad to know others are suffering.

Christine
01-28-2008, 05:19 PM
I just found this thread - couldn't sleep.

As some other posts have said, they have all the symptoms of HYPO as do I and the doctors keep telling me my blood tests are normal! Could it be that MY normal is a little higher than others? I don't get it, I mean EVERY symptom.

My story:
I was diagnosed by my gyno about 17 years ago, he asked what the big lump was in my throat, I thought it was an adam's apple - lol, he told me girls don't have them and sent me to an endo. I felt fine - never had any problems with my weight or anything.

Well, the endo put me on synthroid to "shrink the nodule" ??? and it grew larger so I had to have it removed turns out there were over 50 of them all over my thyroid and they took out the entire thing except for a para. They were all benign but I wonder what causes this?

I grew up in So Cali around lots of orange groves and wonder if maybe the DDT did it?:confused3

Looking at pictures of me when I was like 6 years old you can see a bump in my throat. No one else in my family has ever had this.

I do have a question that no one - including medical professionals has ever been able to answer: If we(those without thyroids) exercise regularly does our metabolism go up like other people's do or are we dependent on that little pill, period?


So glad to have found this thread and it is nice to know that Im not the only one :grouphug: but I am also sad to know others are suffering.


Do you know what your TSH levels are? T3 and T4. This would give a better picture of how you are falling within the lab ranges.

Exercise: it really doesn't speed up your metabolism. Your metabolism is what it is. Exercise is energy expended. Energy expended burns calories. Plain and simple. Each person has a set point in their metabolism. If you are on thyroid meds, that is pretty much controlled by the medication. If you exercise though, you will burn calories like everyone else.

Christine
01-28-2008, 05:20 PM
However, I'm the worlds worst worriwort & now wonder if the glands could be
from the thyroid & it could be cancer. Any input?

thanks much!!


Most people with thyroid cancer (even advanced) didn't detect any swollen nodes. Thyroid cancer does spread to the lymph nodes but it is usually the ones way inside your neck that only the surgeons can get to.

Disneysnel
02-12-2008, 12:40 PM
Thank you so much Christine!

Well, there goes THAT excuse for not exercising - :rotfl:
I tried to find my last lab report but must have tossed it. I will post after my next labs.

Hope everyone is doing good or at least better :flower3:

Kelley

henrylovespooh
02-16-2008, 07:07 PM
Just found this thread - what a great idea!

I was diagnosed with thyroid cancer 11 years ago. My gyn felt a lump in my neck near one of my lymph nodes and had me go see a specialist. They biopsied my thyroid - came back clean, so they only removed the lump. When they tested the lump, it was full of cancer - :eek: - so four days later I went back to have my thyroid taken out.

They left a tiny bit of my thyroid in, near my parathyroid, and I had radiation to kill off that last little bit of my thyroid.

It seems most people are good to go after that one radiation treatment, but every year when I went back for a follow-up test and scan, they found thyroid cells. For about five years, I had radiation, and then got a break because I had two kids. Since then, I've had radiation one more time. My doctor has since decided to see how things go on a year-to-year basis and maybe not have radiation every time the cells come back. I like that - I can't stand to be off my synthroid for six weeks - it turns me into a zombie.

I never heard about thyroid cancer, but I've been asked to talk to three other women who have been diagnosed in the past few years.

So glad to have a site where I can plan for WDW and talk to people about thyroid issues!

henrylovespooh
02-16-2008, 07:12 PM
Most people with thyroid cancer (even advanced) didn't detect any swollen nodes. Thyroid cancer does spread to the lymph nodes but it is usually the ones way inside your neck that only the surgeons can get to.

Forgot to mention this in my last post - the lump in my neck was easily felt. I felt the lump about a year before my gyn found it - but when I asked a friend who was a nurse, she told me my glands were swollen and to take my vitamins. Whenever I did feel the lump again, I thought I was getting sick. It seems so stupid now, but at the time it made sense. My tumor was attached to my lymph node (the cancer had overrun the node) and the surgeon said it was the size of a large peach pit.

I'm actually thankful for the lump - I felt fine, so without the lump God knows when I would have figured out something was wrong with me.

teacups
02-16-2008, 08:33 PM
Hi Thyroid friends! I was diagnosed 9 years ago with Hypothyroid with graves diesease. I found out when i was trying to get pregnant with my first child and could not get pregnant. I now have 3 beautiful children and still suffer from the diesease. My endo doctor wants to kill my thyroid, but I have mixed feelings about it.

Michelle

Can I ask... why would they kill your thyroid when you are already hypo?
Do you mean HYPER thryroid with Graves? I am hypo with Graves... BECAUSE they killed my thryroid! You can kill the thyroid but that DOES NOT kill or treat the graves. PLEASE read all you can before you do that. If I could go back there is no way in you-know-what that I'd EVER do it! Really, I'd never do it again.

IMALOVNDISNEY
03-26-2008, 12:29 PM
I'm glad I found this thread. I got my dx of Hypo 23yrs.ago at the age of 22. For many many years I took my meds, but, never consistantly ( I know now how stupid that was.) Well, 3 yrs. ago I was having major issues with memory (short term was shot and would forget how to tie my shoes and even forgot how to get home from work), body/muscle pain(my entire body would go into spasms,I would loose control of my arms and legs. Dropping things or falling because my legs wouldn't work) constant migranes and nasusea 24/7. It was a very scary time for me. I thought I was going crazy and or dying. All of this was because my thyroid was now Hyper. Not sure what my levels were, but, PCP said they were 4x what they should be and that my body couldn't take in all that hormone. Went to an Endo and was told that I could of had a stroke had I let it go. And that my body was shutting down on me. I ended up doing the RI twice. And was told I have multi nodule goiters. So, now I take my meds everyday like I'm suppose to. My levels still flip flop from time to time but not to bad.

I never took this very seriously, but, now realize that my thyroid controls so much more that you can imagine. I now know this is why I have miscarried 4 times. All 4 times I wasn't regular with my meds. I have 1 healthy DD and was very faithfull with meds before conseption and during preg. And now my eyesite has diminished drasticly over the last 3 yrs.

So, for those of you that are in the begining of your dx. Don't stop until you get all the answers you are looking for. Educate yourself as much as possible, and please take your meds as perscribed. It really is important.

Just a side note: I was told that there is connection with Thyroid Disease, Fybromyalgia and MS. Which is something else that my Dr's are looking into at this time. PCP said that some studies show that most people with MS have a thyroid issue. And studies are also showing that there is a large number of people that are dx'd with Fybromyalgia are later dx'd with MS.

belle&sebastiansmom
03-27-2008, 07:50 AM
Wow. Glad I found this thread. I've got a lot of reading to do.

I was diagnosed hypo nearly 5 years ago after the birth of my daughter. Meds controlled it. Just gave birth to a beautiful boy 5 months ago.

In January, the endocrinologist felt nodes in my neck. Prepared me for the worst (the most scary time of my life). He did an ultrasound and said it was textbook Hashimoto's, and that I didn't need any further tests to totally rule out cancer.

In your experiences, is this true? I will undergo any test to ensure that it is not cancer. Is the ultrasound really enough? He said the "nodes" that he felt were really the misshapen thyroid gland from the Hashimoto's.

Please let me know what your thoughts are on this.
Thanks so much.

claudia
03-27-2008, 09:47 AM
I was diagnosed hypo nearly 5 years ago after the birth of my daughter. Meds controlled it. Just gave birth to a beautiful boy 5 months ago.

In January, the endocrinologist felt nodes in my neck. Prepared me for the worst (the most scary time of my life). He did an ultrasound and said it was textbook Hashimoto's, and that I didn't need any further tests to totally rule out cancer.

In your experiences, is this true? I will undergo any test to ensure that it is not cancer. Is the ultrasound really enough? He said the "nodes" that he felt were really the misshapen thyroid gland from the Hashimoto's.

Please let me know what your thoughts are on this.
Thanks so much.



My endo first diagnosed me with Hashimotos, but decided to do a biopsy on the nodes he felt and they did test postivie for cancer. Now I AM NOT in anyway telling you that it may be cancer....I only telling you of my experience. If I were you I would probably get a second opinion from another endo. Remember the odds are very remote that it would be cancer so please do not even think it.....just go for the second opinion because it sounds like you do not really trust this endo. Best of luck and congrats on your new son!

angwill
03-27-2008, 10:12 AM
Thank you so much Christine!

Well, there goes THAT excuse for not exercising - :rotfl:
I tried to find my last lab report but must have tossed it. I will post after my next labs.

Hope everyone is doing good or at least better :flower3:

Kelley

Here is an excuse ot exercise...when my weight has gone down I need less thyroid med to keep my body even and when my weight has gone up I have needed more. Maybe just a decrease in dosage from exercising will give you something to exercise for now. :rotfl:

belle&sebastiansmom
03-27-2008, 05:52 PM
My endo first diagnosed me with Hashimotos, but decided to do a biopsy on the nodes he felt and they did test postivie for cancer. Now I AM NOT in anyway telling you that it may be cancer....I only telling you of my experience. If I were you I would probably get a second opinion from another endo. Remember the odds are very remote that it would be cancer so please do not even think it.....just go for the second opinion because it sounds like you do not really trust this endo. Best of luck and congrats on your new son!

Thanks for your response. I went to the endocrinologist today, and he's changing my dosage (of course), and I did ask him if there were any further tests I needed. He said that the ultrasound showed the typical Hashimoto's thyroid gland, that there were not even any nodes to biopsy. The bumps and lumps he felt showed up on the ultrasound as the gland (don't think I made that clear in my first post.) I made it clear to him that I didn't want any little terrible thing hiding out somewhere, and he said that's why he does the ultrasounds, so he can see it in real time, the entire area. He's a new doctor since our move and it can all be so overwhelming. Still not sure if I should get a second opinion. AHHHHHHH!

So is this the way it works: There are nodes and there is the Hashimoto's diseased gland. They biopsy nodes, but not the gland?

I hope that your treatment went worked for you and that you're healthy! Many blessings.

claudia
03-28-2008, 05:27 AM
Thanks for your response. I went to the endocrinologist today, and he's changing my dosage (of course), and I did ask him if there were any further tests I needed. He said that the ultrasound showed the typical Hashimoto's thyroid gland, that there were not even any nodes to biopsy. The bumps and lumps he felt showed up on the ultrasound as the gland (don't think I made that clear in my first post.) I made it clear to him that I didn't want any little terrible thing hiding out somewhere, and he said that's why he does the ultrasounds, so he can see it in real time, the entire area. He's a new doctor since our move and it can all be so overwhelming. Still not sure if I should get a second opinion. AHHHHHHH!

So is this the way it works: There are nodes and there is the Hashimoto's diseased gland. They biopsy nodes, but not the gland?

I hope that your treatment went worked for you and that you're healthy! Many blessings.


That's good news. Yes, they biopsy the nodules if they are questionable. Since you have none and your gland itself is inflammed it there is nothing to biopsy. Here is a great site that you might what to check out, it has tons of info. http://endocrineweb.com/

DisneyMissy318
05-09-2008, 08:21 AM
I posted a general CB thread about this condition yesterday - but thought I would post here as well after I found this thread in another post! I'm going to be soon dealing with thyroid problems with my DD10. We saw an ENT on Wednesday after her GP referred her for a severe ear infection. While at the ENT - he discovered that DD has Lingual Thyroid condition - which means the thyroid did not travel down the canal to the normal position during development. DD's thyroid is at the very back of her tongue. If she sticks out her tongue - "ala Gene Simmmons" - you can see "something" back there. Dr. felt her throat area to see if he could feel the thyroid - to no avail - although he said he might not be able to feel it on either of us (her parents) either. So... right now, we are treating the ear infection with a strong antibiotic and ear drops... we go back in 10 days and we will at that time see what's up with the thyroid.

Of course I have read too much info on the internet and I'm just plain worried! This is a very rare annomoly (so rare, I can't even spell anomoly!) I have read that hypothyroidism is very common in those that have lingual thyroid condition - so I will read what you guys have written - I appreciate you sharing your experiences.

Piglet
05-20-2008, 02:39 PM
So glad I found this thread. I was just at the doctors for possible gall bladder problems and she found that my thyroid was enlarged. I went for blood work this morning and have an ultrasound scheduled for Friday.

teacups
05-20-2008, 05:59 PM
So glad I found this thread. I was just at the doctors for possible gall bladder problems and she found that my thyroid was enlarged. I went for blood work this morning and have an ultrasound scheduled for Friday.

Did they say it might be Graves Disease?
Let us know when you get the results.
Hugs to you!

teacups
05-20-2008, 06:02 PM
I posted a general CB thread about this condition yesterday - but thought I would post here as well after I found this thread in another post! I'm going to be soon dealing with thyroid problems with my DD10. We saw an ENT on Wednesday after her GP referred her for a severe ear infection. While at the ENT - he discovered that DD has Lingual Thyroid condition - which means the thyroid did not travel down the canal to the normal position during development. DD's thyroid is at the very back of her tongue. If she sticks out her tongue - "ala Gene Simmmons" - you can see "something" back there. Dr. felt her throat area to see if he could feel the thyroid - to no avail - although he said he might not be able to feel it on either of us (her parents) either. So... right now, we are treating the ear infection with a strong antibiotic and ear drops... we go back in 10 days and we will at that time see what's up with the thyroid.

Of course I have read too much info on the internet and I'm just plain worried! This is a very rare annomoly (so rare, I can't even spell anomoly!) I have read that hypothyroidism is very common in those that have lingual thyroid condition - so I will read what you guys have written - I appreciate you sharing your experiences.

Having a daughter 9 of my own, and I myself was DX'd with a thyroid condition when I was a teen... I must send well wishes your way! Many people do well with replacement meds. Is her gland actually working? Be leary of radiation if that topic ever comes up for any reason. I had it and now warn people off it like crazy. Hugs to yu and your girl :hug:

DisneyMissy318
05-21-2008, 06:43 AM
Thanks for your reply Teacups....

She hasn't had any bloodwork as of yet - our appointment with the ENT at UVA is on June 3... Madi is 5'0 already (as tall as her Mom!) - her Dad is 6'3 - so seems like "normal" growth - although I could see if there was a problem with metabolism as she carries a bit more weight than normal. She also has no energy and gets tired quickly. We are hoping to find out a lot more on June 3.

I'll be sure to be back to share the results and get advice from you guys!

Thanks!

scubamouse
05-27-2008, 02:05 PM
Mind if I join in?

I was dx with Hashimotos about 3 years ago and have been on the same synthroid/cytomel combo for all that time without issue. I think I've spiked hyper based on jittery overall, rapid heartbeat and easier than expected weight loss (I've been on WW since March). I'm waiting on my bloodwork results but I wondering if other people have cycled hyper after a Hashimotos dx? If so, how long does it generally last and how much do your meds adjust?

TIA

angwill
05-27-2008, 06:18 PM
Your thyroid will get hyper when you lose weight. The books I have read say that meds are prescribed depending on weight. The more you weight the more thyroid homone your body needs and vs versa. I went on weight watchers and my medication went down with my weight when I would become hyper. It is supposed to take 6 weeks to regulate on new meds but for some reason I feel the effects right away with switches in meds.

HTH,
Ang

goofyisinphilly
05-27-2008, 07:55 PM
Hi everyone. I am new to this thread. I am 26 and have had hypothyroidism for almost 2 years. Last week an my annual gyn appt the dr noticed that my thyroid was enlarged. So off to my general prac dr for an ultrasound. My favorite part was that they'll call me in 3-9 days.

At this rate I could gain like 12 lbs in that time. I always know when my thyroid is off b/c I gain weight at an alarming rate. As in last week was 6 lbs. That is with WW and walking/biking 5-6 miles a day. Let's hope they call sooner rather than later. :(

Sugarfoot
07-01-2008, 03:36 PM
I had nodules on my thyroid about 5 years ago, had surgery to remove part of my thyroid and the isthmus.

Last year more nodules were discovered and I almost cried, I didn't want surgery again! But the surgeon I went to before no longer works at the hospital, so they sent me to someone else and he is wonderful!!

He sent me for an ultrasound guided fine needle aspiration, and since it was benign he said we'd just "watch it." Six months later I had another ultrasound and nothing had changed, so he said to wait another year and have another ultrasound and if nothing has changed by that time he will just say I'm one of many who get nodules and leave me alone.

I'm all for that!! :banana:

I do take thyroid medication daily and have a "permanent smile" on my neck.

Lisa_M
07-13-2008, 07:51 PM
I'm so glad I found this thread. I need a little advice. My two sisters and mother all have hypothyroidism. My youngest sister (age 15) was diagnosed with Hashimoto's at age 10. She has been on Synthroid since. She goes to a good Endo, but he is out of town, she lives in a small town, so she only goes about once a year even though she should be there twice a year. My mom is quite the procrastinator, which is why she doesn't get there enough and I live in a different state so I can't take her. She goes for bloodwork every 3 months and it is usually normal.

Anyway, she is visiting for the summer and is having a bit of a rough time. She has been exercising at our fitness center, eating healthy, but just keeps gaining weight (about 20-30lbs in the last year). She is feeling so discouraged. As you can guess she is overweight and I'm supposed to take her shopping for clothes and stuff for school. Well we went to Lane Bryant and everything looked bad on her (maybe they are cutting clothes differently now or maybe she just gained weight in weird places). Anyway, on the way home she cried in the car and I felt so helpless. I told her that I know she's frustrated, but we'll find stuff that looks good, we just have to keep looking. I don't know where because plus size clothing is hard to come by. Any suggestions for stores?

Also, I know she is upset because my other sister was a size 24 for a long time and is now a 28 and she really works out hard, but the weight just doesn't seem to come off. I think maybe she is afraid it will be like that for her.

To make matters worse, my youngest sister has a lot of facial hair that I guess comes with the disorder. Last time she was at the doctor he said she may have Polycystic Ovarian Syndrome. She is so self concious about it, she just wants me to wax it off, but my mom is a PITA and says don't do it because it will come in like a man's beard, etc. She had blood work to find out if it was PCOS, but of course, the lab lost it and my mom never called to have it reordered.

soooo....anyone have any tips, advice, suggestions for me or my sister? Being in high school, all these things are very hard for her to deal with. She loves to read so if there are any book suggestions, we are open to them. High school is hard enough without all this.

If you made it this far....thanks for reading

teacups
07-13-2008, 09:15 PM
I'd love to take a peek at her thyroid blood test results.
Thyroid is SO HARD to deal with, and if you are an unlucky one who doesnt react as expected once meds start, then you're really in for an uphill battle.

Does she have access to her tests? She should. And she should learn what they mean with some good research. Without seeing her labs, you could suggest that she ask her doc if her levels are ok... and where in the range she falls. You might talk to him about other meds. Or even other diagnoses...

I sure hope she gets help.

angwill
07-13-2008, 10:02 PM
I'm so glad I found this thread. I need a little advice. My two sisters and mother all have hypothyroidism. My youngest sister (age 15) was diagnosed with Hashimoto's at age 10. She has been on Synthroid since. She goes to a good Endo, but he is out of town, she lives in a small town, so she only goes about once a year even though she should be there twice a year. My mom is quite the procrastinator, which is why she doesn't get there enough and I live in a different state so I can't take her. She goes for bloodwork every 3 months and it is usually normal.

Anyway, she is visiting for the summer and is having a bit of a rough time. She has been exercising at our fitness center, eating healthy, but just keeps gaining weight (about 20-30lbs in the last year). She is feeling so discouraged. As you can guess she is overweight and I'm supposed to take her shopping for clothes and stuff for school. Well we went to Lane Bryant and everything looked bad on her (maybe they are cutting clothes differently now or maybe she just gained weight in weird places). Anyway, on the way home she cried in the car and I felt so helpless. I told her that I know she's frustrated, but we'll find stuff that looks good, we just have to keep looking. I don't know where because plus size clothing is hard to come by. Any suggestions for stores?

Also, I know she is upset because my other sister was a size 24 for a long time and is now a 28 and she really works out hard, but the weight just doesn't seem to come off. I think maybe she is afraid it will be like that for her.

To make matters worse, my youngest sister has a lot of facial hair that I guess comes with the disorder. Last time she was at the doctor he said she may have Polycystic Ovarian Syndrome. She is so self concious about it, she just wants me to wax it off, but my mom is a PITA and says don't do it because it will come in like a man's beard, etc. She had blood work to find out if it was PCOS, but of course, the lab lost it and my mom never called to have it reordered.

soooo....anyone have any tips, advice, suggestions for me or my sister? Being in high school, all these things are very hard for her to deal with. She loves to read so if there are any book suggestions, we are open to them. High school is hard enough without all this.

If you made it this far....thanks for reading

Hi, my heart goes out to your little sister. I have the same issues lately that my thyroid is low and I have gained 35 lbs in the last year with 10 of them being in the last month with watching and writing all my food down (gave up on WW since I was on the lowest points they suggest and still gaining) and exercising 45 minutes of cardio and 15 min of weights. Go figure. I am off to my doctor tomorrow to discuss it and get a TSH check. Not much you can do except be careful of what you eat and exercise. Along with keeping in touch with the doctor.

As for clothing. There is Avenue and Fashion bug plus or online there is Woman Within and Roaman's. Google the store names with coupon after them and you will find lots of discounts. The online stores have lengths listed so if she likes longer tops she can easily find them there.

Good luck and tell your sister she is not alone and not to give up trying.

jennz
07-17-2008, 08:29 PM
Hi everyone! Love this thread...I too had thyroid cancer, gp noticed my swollen thryoid in when I was 27, watched it for 6 months, biopsied - not definitive, went in for surgery, did a frozen cell biopsy that showed benign, got home and the next day they called and said it was actually malignant and come back in and get the rest out. A complication from my surgeries...my parathyroids died and my body now does not produce or absorb calcium without lots of help (meds).

Must go, dd isn't feeling well and wants me to lay with her. Will read and write more tomorrow.

Oh - I also had Hashimoto's, they discovered that when they removed my thyroid, said I'd had it for a while.

I've always been told t.cancer isn't hereditary - anyone heard different? I'm also watching for signs in dd of Hashimoto's, any certain signs to look for? Growth, she's always been top of the charts and used to be SKINNY. Now at 10 she's a little heavier than many of her peers, but she could also just be gaining and getting ready to grow...I just worry about her...

nannerbadnanner
07-19-2008, 10:22 PM
Hi everyone! I just discovered this thread and wanted to post. I lost my dad in January to thyroid cancer (very rare type called anaplastic carcinoma). He was diagnosed in 2004 and given 6 months to live, but he was a fighter and lived for close to 4 years after his diagnosis.

I am also hypothyroid, and I honestly get completely freaked at the thought of cancer. I do have a yearly ultrasound, and so far, they haven't found anything that looks suspicious. Of course, fears aren't always rational!

jennz
07-20-2008, 07:22 AM
Hi everyone! I just discovered this thread and wanted to post. I lost my dad in January to thyroid cancer (very rare type called anaplastic carcinoma). He was diagnosed in 2004 and given 6 months to live, but he was a fighter and lived for close to 4 years after his diagnosis.

I am also hypothyroid, and I honestly get completely freaked at the thought of cancer. I do have a yearly ultrasound, and so far, they haven't found anything that looks suspicious. Of course, fears aren't always rational!

I'm so sorry about your dad. :hug:

No fears aren't rational, you're absolutely right. :) Are you seeing an endo? I would think that if you're getting annual ultrasounds they will be able to find any cancer before it grows too much. I, like many others who've posted, had my cancer and they watched the growth for 6 months before they decided to operate...the good news about this cancer is it's slow growing. So remind yourself of that when you start to get scared. You're aware of it and monitoring so it won't take long to find it if it's there...:hug:

nannerbadnanner
07-20-2008, 12:03 PM
I'm so sorry about your dad. :hug:

No fears aren't rational, you're absolutely right. :) Are you seeing an endo? I would think that if you're getting annual ultrasounds they will be able to find any cancer before it grows too much. I, like many others who've posted, had my cancer and they watched the growth for 6 months before they decided to operate...the good news about this cancer is it's slow growing. So remind yourself of that when you start to get scared. You're aware of it and monitoring so it won't take long to find it if it's there...:hug:

Thanks for the encouragement. Currently, my general practioner has been doing my testing and refers me out when there is a problem and for ultrasounds. She has had thyroid cancer so she has been great about everything. The endo I was using previously was awful so I stopped going to her. She was more worried about selling me a diet plan that she had created than helping my condition.

Babypandaroo
07-24-2008, 12:55 AM
Hi. I have hypothyroidism too. ;) I was diagnosed with it when i was 12 or 13. My parents didn't find out i had it till i went with them to my sisters thyroid doctor and he took one look at me and said i had it and i had blood tests done and it confirmed it. Also my dad has it as well so we all on synthroid medication. :scared1: . I'm 28 now and still the same size i was when i was 13. I see a family physician now instead on an endocrinologist. I get tired alot but that's from babysitting a one year old these days. lol

Aunt Flancy
07-24-2008, 09:21 AM
I'm so glad I found this thread. I need a little advice. My two sisters and mother all have hypothyroidism. My youngest sister (age 15) was diagnosed with Hashimoto's at age 10. She has been on Synthroid since. She goes to a good Endo, but he is out of town, she lives in a small town, so she only goes about once a year even though she should be there twice a year. My mom is quite the procrastinator, which is why she doesn't get there enough and I live in a different state so I can't take her. She goes for bloodwork every 3 months and it is usually normal.

Anyway, she is visiting for the summer and is having a bit of a rough time. She has been exercising at our fitness center, eating healthy, but just keeps gaining weight (about 20-30lbs in the last year). She is feeling so discouraged. As you can guess she is overweight and I'm supposed to take her shopping for clothes and stuff for school. Well we went to Lane Bryant and everything looked bad on her (maybe they are cutting clothes differently now or maybe she just gained weight in weird places). Anyway, on the way home she cried in the car and I felt so helpless. I told her that I know she's frustrated, but we'll find stuff that looks good, we just have to keep looking. I don't know where because plus size clothing is hard to come by. Any suggestions for stores?

Also, I know she is upset because my other sister was a size 24 for a long time and is now a 28 and she really works out hard, but the weight just doesn't seem to come off. I think maybe she is afraid it will be like that for her.

To make matters worse, my youngest sister has a lot of facial hair that I guess comes with the disorder. Last time she was at the doctor he said she may have Polycystic Ovarian Syndrome. She is so self concious about it, she just wants me to wax it off, but my mom is a PITA and says don't do it because it will come in like a man's beard, etc. She had blood work to find out if it was PCOS, but of course, the lab lost it and my mom never called to have it reordered.

soooo....anyone have any tips, advice, suggestions for me or my sister? Being in high school, all these things are very hard for her to deal with. She loves to read so if there are any book suggestions, we are open to them. High school is hard enough without all this.

If you made it this far....thanks for reading

I am no help with the weight issue ( I have gained 50 pounds in the two years since I had my thyroid removed) but I wanted to tell you that Torrid is a good store for plus sized teenagers or young people. www.torrid.com

frdeb1999
07-24-2008, 09:47 AM
Update on DH. He was given a clean bill of health after having his 6 month ultrasounds. It has been rough on and off for the past 6 months trying to get him on the right med levels. And they have just upped them again. But they did tell us that it would be probably at least a year until they had them regulated. So we're being patient. He is feeling so much better though. We are both so very glad that we switched surgeons and did'nt allow the 1st to do the partial removal as he wanted. I think that would of in hind sight been a bad thing all the way around. Just wanted to say to all the new people...Welcome! This thread is a wonderful way to help ease your mind and get answers and opinions. It helped me tremendously! I'm not by any means an expert on this subject and am learning as I go. But one thing I can tell you....if you don't like the answers or treatment your getting from your dr....make sure you look for another. We are so very glad that we did. And we now have a wonderful Endo who actually listens and explains. Will continue to update. Thanks all once again! :)

TinkerCarol
08-07-2008, 12:14 AM
I am a almost 6 year thyroid cancer survivor. Had my whole thyroid removed in Sept, 2002. I hate going through the yearly hypo and scan. This year I went the Genzyme shot route. It was a lot easier, but still hard to take. People always say "You are so lucky it is only thyroid cancer!". Yea, I am so lucky I had cancer!!! There is a great thyroid group online called thyca.org. I get a lot of info and strenth from that sight. I am so happy you started this thread. Nice to have comfort for a mutual problem and mix a litlle Pixie Dust in with it. Prayers for all of us says the Queen!!!! And great THS's for all says the King.:cheer2:

DisneyMissy318
08-13-2008, 07:15 AM
I wanted to come back and post about my DD.

It was discovered that the entire thyroid gland was growing on the back of her tongue - and it was growing fast. Because of the size it was decided that it had to be removed. Initially they decided to implant a portion in her forearm, but at the last minute decided to just leave a small piece in place on her tongue. We go today for her post-op check-up and to find out the THS levels and to see when they are going to start Synthroid.

I have been putting a list together of questions to ask at today's appointment - The surgeon and his resident are very good at what they do - but I think they assume that you know what they know and are quick to answer - but not explain.

I'm going to go back and read this thread from the beginning. I'd like to find out what I need to look for in DD - to indicate her levels are too high or too low, etc.

Thanks for the thread - and all of the info that has been shared.

CindyLoPiano
08-21-2008, 12:22 PM
Has anyone here done any bariatric surgery due to their weight gain from hypothyroidism? I am seriously considering it. I've been carrrying around these pounds too long, and I just can't stand being this overweight anymore. The thyroid has just "killed" my metabolism. I've done WW, Nutri, Slim-fast, too many diets to count. I walk all the time, a minimum of 1.75 miles, more often 2.5 miles at least 4-5 times a week. It's just so frustrating. Especially when I ballooned up so fast. A couple of years ago I ballooned up almost 35 lbs in one month! Lord, keep me strong!

uromac
09-24-2008, 01:19 PM
Hi!

Just found this thread - through someone on the budget board when I posted an OT thread re: Thyroid Cancer. as my sister just found out that she has Thyroid Cancer after having it removed - she has completed her medication and is now off that and has started special diet and then will go for radio-active iodine treatment. She has 2 kids 6ds & 2dd who have to physically stay away from her for at least a week. During this time, she has stay in her home as she is going to be radio-active for a while so her kids are going to stay with my parents. It used to be that you stayed in a hospital during this treatment, but now you go home and deal with the consequences or making sure that others and the home remain relatively safe and radioactive-free. I know this is going to be difficult, so has anyone gone through this or know anyone that has? Any helpful hints on coping with this would be greatly appreciated!

We still have WDW scheduled for Thanksgiving as a family so at least she has something to look forward to !

Thanks!

Melissa :wizard:

jennz
09-24-2008, 01:37 PM
Hi Melissa -

When I had my radioactive iodine treatment I was in the hospital until my radioactivity came below a certain level and people had to stay x-paces away from me. When I left I had to leave my toothbrush, underclothes, etc at the hospital. At home I had to pour rat poison in the toilet after I went (each time) - they said it attracts the radiation or something from the toilet. I didn't have dd at the time (it was 15 years ago) but they did tell me if I had a child neck/neck contact was prohibited. So cradling her or something. They were primarily concerned w/ kids b/c they're still growing. Had to wash the sheets in hot water and not sleep w/dh for a few nights.

I don't remember a special diet...

It might be a bigger adjustment for her to get her meds at a good level...that was frustrating. I remember being hypo and hyper in the following months, neither was a good feeling.

pakhowe
09-24-2008, 03:12 PM
Hi all. I started a thread about this but I am so glad I was pointed in this direction.

Here's the short story...an ultrasound of my thyroid found a lump. I need to have it biopsied. I have an appointment but what can I expect at that visit. Will the Dr do the biopsy in his office?? Will it be a consult first then another visit?? Will this hurt, is it invasive? Has anyone had this done before?

The long story...I have been going through lots of testing for the past 4-5 years to explain my symptoms. I have been tired, depressed, forgetful, twitchy, have headaches every day and sometimes I don't speak right. I either forget the words, forget what I was going to say or just slur the words. It has been frustrating to say the least. About 3 years ago I went for an MRI and the neurologist said it may be MS. I have 'spots' on my scan. A year later I went for a follow up MRI and the same spots were still there, same size, etc. Recently I went to my primary care office for a checkup and saw a different PCP in the office. She read my MRI report and said the technition stated that the 'spots' were insignificant in size and that the neurologist I had gone to did not specialize in MS soooooo to rule out everything she sent me for more labs. My bloodwork has been coming back normal every time. I mentioned that my husband suggested having my thyroid checked. My bloodwork on that once again came back normal but she also sent me for an ultrasound. This is how they found the lump. The Dr said she is hopeful because there is a lump on both sides but 1 just isn't big enough to biopsy but she still wanted me to see a specialist ASAP. They wouldn't even let me make the appt.

I'm kinda scared and want to know what to expect from anyone who's been there.

Thanks

jennz
09-24-2008, 03:36 PM
I had a needle biopsy done on my lump I had on my thyroid...they use a long thin needle and tell you it feels like a bee sting. Honestly it wasn't bad and I'm a HUGE wimp!! And yes he did it in his office. Mine came back inconclusive and they watched it for 6 months to see if it would grow (it did) and then did a partial thyroidectomy, the frozen cell biopsy they did during the surgery came back benign but oops - wasn't accurate so I got to have another surgery a few days later after the other biopsy came back.

I remember feeling scared when I had it done, and thinking about walking around and looking "normal" when I might have cancer inside me. I think it's worse not knowing, you have no plan and no direction.

Many of your symptoms sound like hypothyroid - forgetful, tired, depressed. I was going to say the problems w/speech and "twitchy" sound like it to but I was mixing my symptoms - that's how I get when my calcium gets low, I stutter and get "twitches."

I feel for you...:hug: how frustrating and scary to be going through this for 4 - 5 years and then hearing it might be MS...I hope these new tests give you an answer.

jrandtysmom
09-24-2008, 07:49 PM
Hi Everyone! I am so glad I found this thread. I went to the doctor a few weeks ago and they discovered that my thyroid is enlarged. They've done bloodwork and a Cortisol Free Urine test and everything came back normal. Then they sent me to have an ultrasound on my thyroid and it came back as having cysts on my thyroid so now my GP wants me to see an Endocrinologist but she had no answers about the cysts - if they are just fluid. The Endo Dr is now reviewing my file before I can make an appointment? Is that normal? I'm wishing they would just figure out what is wrong.

dougsmom98
09-25-2008, 11:19 AM
Hi all. I started a thread about this but I am so glad I was pointed in this direction.

The long story...I have been going through lots of testing for the past 4-5 years to explain my symptoms. I have been tired, depressed, forgetful, twitchy, have headaches every day and sometimes I don't speak right. I either forget the words, forget what I was going to say or just slur the words. It has been frustrating to say the least.
Thanks

Your symptoms are almost identacle to my symptoms! I also had an MRI, but mine came back normal. I thought for sure it was a brain tumor or MS. After the MRI, they did the blood tests and found I have hyperthyroidism and likely Grave's eye disease since I am having eye problems. It is odd that I am hyper since most of my symptoms are hypo (speech problems, forgetful...). I had an ultrasound last week on the thyroid and I haven't heard, so I think it was normal. I go for a radioactive iodine scan in two weeks and I am on an iodine free diet until then.
Good luck with the biopsy. I have heard it isn't too bad. Let us know how it goes.

KAMLEM
09-25-2008, 02:36 PM
For those of you who had your thyroid removed, were you able to lose weight once you got your medication straightened out? It has only been three months since I had mine removed and we haven't figured out the right dosage yet. I still feel horrible, I can't even keep my eyes open at work anymore. I go back for bloodwork next week. I'm just hoping that once we get it straight I'll be able to lose some weight. I really don't eat a lot either, I don't have much of an appetite.

jennz
09-25-2008, 02:48 PM
ugh - I know when mine's been low I feel the same way you're talking about, plus it seemed like I hardly ate and gained weight! I have struggled w/my weight since I've had it out. My endo says it's not related. For what it's worth.

Good luck with getting your dose right!! :)

pakhowe
09-25-2008, 02:57 PM
Your symptoms are almost identacle to my symptoms! After the MRI, they did the blood tests and found I have hyperthyroidism and likely Grave's eye disease since I am having eye problems. It is odd that I am hyper since most of my symptoms are hypo (speech problems, forgetful...). I had an ultrasound last week on the thyroid and I haven't heard, so I think it was normal. I go for a radioactive iodine scan in two weeks and I am on an iodine free diet until then.
Good luck with the biopsy. I have heard it isn't too bad. Let us know how it goes.


I find it so strange that all my blood work keeps coming back normal. I was sure it would show something. I go in 2 weeks for my biopsy, Ill let you know how it goes. Good luck with your scan. Have you started any meds yet or waiting until the scan is done? I'd call your PCP about the ultrasound. My PCP was upset I didn't call sooner, they hadn't forwarded her the report so I never got a call about the results (of course I was supposed to have an appt sooner but with it being summer and all, and of course my trip to WDW, my appt had to wait).

I will have to look up Graves Disease. Good luck.

BTW, where in ME are you?

pakhowe
09-25-2008, 04:00 PM
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jennz
09-25-2008, 04:11 PM
I think the blood work depends on what they order and who's looking at it. Do they look at your TSH and T4 levels?

dougsmom98
09-25-2008, 09:38 PM
I find it so strange that all my blood work keeps coming back normal. I was sure it would show something. I go in 2 weeks for my biopsy, Ill let you know how it goes. Good luck with your scan. Have you started any meds yet or waiting until the scan is done? I'd call your PCP about the ultrasound. My PCP was upset I didn't call sooner, they hadn't forwarded her the report so I never got a call about the results (of course I was supposed to have an appt sooner but with it being summer and all, and of course my trip to WDW, my appt had to wait).

I will have to look up Graves Disease. Good luck.

BTW, where in ME are you?

I started methimazole this past Friday. I am not sure if it is helping yet. It feels good to be doing something though. You'll be getting your biopsy around the same time that I am getting my thyroid scan. We'll have to keep each other posted on the results.

I live in the Bridgton, ME. Where in Maine are you?

pakhowe
10-05-2008, 02:20 PM
I think the blood work depends on what they order and who's looking at it. Do they look at your TSH and T4 levels?

I'm not sure what they are looking at when they do the blood tests. I just know they tell me they are checking my thyroid levels???


Dougsmom98, I live in Southern Maine...York area. Good luck next week. I'll post again after my Dr appt.

frdeb1999
10-05-2008, 04:01 PM
My husband is going on the 1 yr mark next month since having his thyroid removed and still isn't feeling 100% yet. They keep slowly upping his meds and he does great for about a month after and then it seems to level out again and he's right back in the same boat. His endo told him though it would be between 18-24 months before he started totally feeling like himself again. He's improving steadily, just gets him upset that it's not as fast as he'd like it to be. And the weight thing....he eats less now then he did prior to surgery and still manages to gain. I really feel bad for him....endo says same thing....not related....but I just don't agree. Hopefully all will level out soon. Just am thankfully that his first round of scans came back clear....next ones are in Dec..Hopefully it will continue same course!