Graves' Disease Support Group

Sorry to tell you but, this is the world of thyroid disease.

Can't explain why but everyone on here deals with the same nonsense you have had to deal with.

If you read the posts under "new Doc on Friday", you'll get an idea.

If you read some profile information, you'll discover that some people went undiagnosed for YEARS.

Just so you can see how bad it is out there, you might want to check out this patient advocate website.....it applies mostly to hyPOthyroid peeps but, if a person chooses one of the permanent treatment options, hyPOthyroidism is the result so you'll see what they have to go through. It's pathetic.

Here's the link

http://www.stopthethyroidmadness.com/

Feel free to vent anytime - we all do it quite often thanks to the docs that (don't) treat us.

I'm so thankful for my GP including a thyroid check with my annual physicals.....I'm not thankful for the idiot endos (3) that mismanaged my care since.......just found a "with-it" internist who actually understands all things Graves' and I finally have hope that I won't have to continue fighting for the care I know I need.

Best of luck to you - keep posting - we've been there and will do everything we can to help keep you going in the right direction.

It's obvious your docs haven't done that for you - sorry :(

Hey - did you have any blood work done?

If yes, your docs should have been able to confirm whether or not you have Graves' disease.

If you do indeed have Graves' disease, I don't understand why they haven't started you on meds yet.

There is often an immediate easing of symptoms and it just gets better.

Then, the tricky part is making sure the docs medicate you properly to keep you feeling better - THAT is the biggest challenge with thyroid disease.

Well, the doc's office called this afternoon, and the doctor said he needed to see me right away. Here are my labs, given to me today (taken last week):

T3UP: 37.9 (.9% high)
FTI: 2.01 (in normal range)
T4: 5.3 ug/dL (in normal range)
TSH: 1.54 UIU/mL (in normal range)

I also had a nuclear scan/uptake done, since a nodule was found on my thyroid. It is 8mm in size. There were no hot or cold spots on my thyroid, and there was diffuse uptake throughout. All values were within normal limits. A "Normal Thyroid Uptake Examination"

Okay. So I am having these symptoms. Anyone have any idea what is going on?? The doc simply told me it was all in my head. I am at a loss here.

Thanks!

First I would like to say that I am so sorry for what you are going through. I am very sure it is not all in your head. We all think that for a while LOL!! I thought maybe I had become bipolar a couple of months before my diagnosis. I am not quite sure what it could be but here are a few suggestions.

There are other autoimmune disease, lupus, MCTD (mixed connective tissue disease), APS, etc...

Blood tests for these are ANA, CRP, ESR rate, and many many more. Did your doc run other blood tests other than thyroid? Other diseases or problems can mimic each other. I have severe graves and I think I have been suffering for many years with other undiagnosed problems. Good luck and best wishes, I hope you can find out what is wrong so you can be on your way to a speedy recovery. Take Care.

Could you please post the ranges for your labs? You see different labs in different parts of the country use different ranges and it's important to evaluate your level within the range.

Also, the FTI you list - do they describe it more? I'm wondering if that is an abbreviation for Free Thyroxine Index.

Sorry to say, they didn't run the right labs for your thyroid - except for TSH which is helpful but sometimes not completely useful for diagnosis.

You really need the Free T4 and Free T3 tests.....these tests measure the amount of thyroid hormone that are unbound to proteins, etc. and fully available ("free") for the body's needs.

T4 and T3 levels can be falsely elevated, depending on other things going on with the body.

Indexes have limited values since they are calculations of the already less useful T4 & T3 measurements.

With Graves' disease there is most often a high uptake value - you might have something else going on here.

Did they run a TSI (thyroid stimulating immunoglobulin) test? That is one of the Graves' antibodies and any value greater than 0 can indicate Graves'.

Your symptoms definitely sound hyperthyroid - it's time to narrow down the cause of it.

You need to be tested for the FREES ,the tests you had are outdated. You might have Hashimoto's disease instead, they feel anxious too. Your tsh is too high to have Graves and a normal uptake scan or not one that the thyroid"takes up" a lot of iodine means you probably don't have Graves.There are antibody tests they can do for both, the TSI, the anti tpo's and the anti tg's. If the last two are higher than the first one you might have Hashi's.

Here are the ranges:

T3UP: 22.5-37% (Mine was 37.9%)
FTI: 0.96-4.55 (Mine was 2.01)
T4: 4.5-10.9 ug/dL (Mine was 5.3)
TSH: 0.35-5.5 uIU/mL (Mine was 1.54)

Yes I believe the FTI is "Free Thyroid Index". There are no specific Free T3 or T4 tests listed.....nor was there a TSI test run...

Yes...get the Free T3, Free T4 and the TSI tests done so we can better know what's going on with you.

{{{hugs}}} :-)