Need your advice

[shr2day]

I have been diagnosed by my endo as having hyperthyroidism because of multinodular goiter and a TSH of 0-0.5 (nor. levels 0.4-4.7 and FT4s 06-1.5 (nor. levels 2.4-4.2) and low Vit D.  My TSH has been low since2001. My endo is thinking it could be a hot nodule. I had an uptake/scan but don't know the results yet.  See the endo again in a couple of days. I have been following the posts to try and learn more about thyroid disease.  I also have terrible fatigue, hot and cold, nervousness, fast heart beats, muscle weakness.  I would like the forum's feelings on the endo's diagnosis and what I need to ask the doctor when I see him again.  This all is very new to me. Thanks.

[Smilerdeb]

Sorry was supposed to read....It was wrong for the Doc to say that he didnt think the TSI was NOT relevant and didnt need to do it.

[Smilerdeb]

It was wrong for the Doc to say that he didnt think the TSI was relevant and didnt need to do it.
Although I do agree that permanant treatment is needed.
Research all you can on HYPOTHYROIDISM....and Thyroidectomy as you are now going to find out about the 'other side of the fence' so to speak.
If you do have Graves then controlling it is very hard and can be dangerous.

Make sure your Doc also gives you a beta blocker to take as you will need it while you wait for the surgery.
The TSI test takes a few days to come back..not as quick as the normal thyroid function tests.
If there is any doubt whatsoever in regards to Cancer...removal is needed.

I had cancer of the whole thyroid with Graves and Hyperthyroidism.
The hyperthyroidism was way too hard to control which resulted in 3 episodes of thyroid storm (atrial fibrilation) in 2 weeks so RAI was ordered.....
I found out 3 days before RAI that I had thyroid cancer so TT was performed 3 months later via unde  the armpit.

I have never looked back or regretted any of the permanant treatment I had done because if it wasnt done, I wouldnt be here writing this post.
I had heart issues that made TT too dangerous at the time.

Research all you can...and it will help you after the surgery in regulating your levels.
This may take some time...so have a lot of patience (something most of us thyroid patients dont have lol )

All the best :)

[shr2day]

Just got home from my visit with my endo and got the results from my uptake/scan.  Findings:  Heterogeneous appearance of the thyroid is again identified.  Areas of decreased uptake are again noted within the right mid and superior thyroid corresponding to previously noted thyroid nodules.  Focal decreased uptake within the inferior left thyroid corresponding to known solid nodule is similar.  Six hour uptake value is 27.8% and 24 hour uptake value is 48.2%.  Impression: 1. Similar heterogeneous appearance of the thyroid with cold defects involving the right mid and superior thyroid and left inferior thyroid.  These nodules correspond to known thyroid nodules on ultrasound. 2. Moderately elevated 24 hours uptake value as seen previously.  (I don't know when all of this was seen previously as no one let me know!)  The endo says that I have 3 cold nodules.  He said there is no way of determining if they are cancerous unless I have surgery to have them removed and that is what he is suggesting and has referred me to a surgeon.  He said a biopsy sometimes misses the cancer if they don't biopsy just the right spot and with 3 that could happen.  He does not recommend Iodine because, again, he says this does not work if you have cancer. He says that trying to adjust my thyroid with medications could help but is not dealing with the possibility that there could be cancer.  He has put me on Methimazole to bring down the over production until I can have my thyroid removed. He says he will then follow up with hypothyroid medications to adjust the hypothyroidism after the removal. He does not think I have Graves Disease although his assistant did.  I asked for the TSI and he said he didn't feel I needed it because it would not change his recommendation for the removal of my total thyroid.  I requested it anyway and had it done today but no results yet.  My question is should I go ahead with the removal of my thyroid?  Is there anything else that I can do to find out for sure if my thyroid is cancerous? Is this the best avenue for me to take?

[Smilerdeb]

Its TSI and not TSH which determines Graves Disease.

Ask for the TSI (thyroid stimulating Immunoglobins) to be tested.

[shr2day]

Thanks for your reply. I had my uptake scan this week but don't have the results back. I will post them when I get them from the doc. Is TSH antibody testing different from the TSH blood test I had or is this the antibody testing I've heard mentioned?  Also, I need to do some more research on the hot vs. cold nodules.  Do just the cold nodules turn cancerous?  Because of where I live, the endo only comes here once a month and he is the only one available unless I travel a good distance.  I've got the feeling this is going to be a long journey!  I am thankful for the forum.

[shr2day]

Thanks for your reply. I had my uptake scan this week but don't have the results back. I will post them when I get them from the doc. Is TSH antibody testing different from the TSH blood test I

[Marisen]

Okay, the short class on thyroid function is that is regulates your metabolism on the CELLULAR level, which basically means it is in charge of telling your cells how to work. People with slow thyroid have cells that aren't getting enough information to function accurately, and folks with overactive thyroid are burning up from a system that constantly has the pedal to the metal. That's why any disorders of thyroid function need to be taken very seriously, since they have the very real potential to put your life in danger if not treated.

In light of the "hot nodule" I would certainly want to know if the doctor intends to do a biopsy on it to confirm his diagnosis, since in terms of what has a better outlook medically you would want it to STAY a hot nodule and not turn out to be a cold nodule, which might send you to the Oncologist.
The fast heartbeats are the next most important symptom to address, since it puts stress on your cardiac system and may create weaknesses over time from the constant overwork, which is the same problem that a patient with chronic high blood pressure has to worry about.  

The symptoms of fatigue, nervousness, hot and cold sensitivity, etc. may be relieved to a certain extent by thyroid treatment, but you may find that you are still sensitive to those symptoms every so often even with treatment. It will, however, be easier to function overall, as long as you receive regular checkups to monitor your thyroid levels.

Hope you find relief soon!

[Smilerdeb]

Get tested for Graves Disease (TSI antibody testing) and dont have permanant treatment until you have at least had a trial on anti-thyroid meds. This gives you time to research all you can about thyroid disorders.
Also ask for an uptake scan (i-121) and this will show just how 'hungry' the thyroid is.
Your Doc should also put you on a beta blocker to help with the anxiety, fast heart rate etc.
Once the anti-thyroid meds kick in (usually a few days) the aches and pains will start to subside.
Make sure you are tested every 2-3 weeks as you can go HYPO quickly on these meds and you may need either a decrease/increase.

Research all you can about Hyperthyroidism.
Good Luck :)