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.

 

[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...

 

[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!!