The THYROID Thread

[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!!!

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 .

My hypo is under control now (although we are still getting other problems worked out...I just found out I have sleep apnea ) 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 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.

 

[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...

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

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

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.