The THYROID Thread

[Christine]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

sorry i meant to start a new thread ,my mind is not my own at the moment sorry

[StephMK]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

lyeag, I was thinking about you and wondering if they contacted you about your tests. Are you feeling better? I hope so. :)

[lyeag]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

Oh and good for them for doing both the FT4 and FT3!!!!!

[lyeag]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

.

[kathleena]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

Is weight gain/loss always a symptom of thyroid disorders? I've been hav