Graves-I don't know?????

[911*]

Hi,:confused:
I'm from sunny UK and confused. Three weeks ago, the results of my blood test showed I had hyperthyroidism. (TSH <0.02, FT3 9.7) I don't know what these figures mean but was told it indicated overactive thyroid. This Tuesday I went to see an endo. He talked about a palpable swelling, abnormal antibodies and I heard him mention Graves Disease to a colleague but he did not mention it to me. I have had no further tests and am due to have RAI next Wednesday. Everything just seems very vague and I feel very confused and uninformed.:(
If there is anyone out there that has any idea about the results of my blood test I would really appreciate a response. Also can anyone give me any idea about how I will feel after RAI. At the moment I feel very unwell and have a lot of pain at the sides and back of my neck in addition to numerous other symptons. The endo told me that this pain is not symptematic of an overactive thyroid - any ideas???:confused:
I look forward to hearing from any you and will keep you posted on my progress.

[GeekLady]

I'm in the Southeastern part of the US. I'm sorry you're not feeling well.

I had symptoms of a thyroid abnormality (palpitations, arrhythmia, hives, thinning hair, heat intolerance, excessive thirst, irritability, itchy eyes, etc.) leading me to an allergist, then the endo referral, and I was diagnosed as having Graves Disease / hyperthyroidism. I'm still not sure what the lab numbers mean, but mine were all high, and my Thyroid Stimulating Immunoglobulin (whatever that is!) was almost double of the normal high range. Normal is 0-129 and mine was 236.

The Iodine uptake test will show how much thyroid hormone your thyroid is pulling in. The test dosage has a very small amount of radioactive stuff in it, but it was a sufficient amount that I felt a little bit achy in my leg and neck muscles. But not too bad. I noticed that my heart didn't seem to be pounding as hard even with this small amount, so I felt that I must be on the right track. I went back twice for the doctor to measure how much I was taking in. These levels were also a determining factor to find out how much RAI I would need to eliminate my thyroid.

It was an extremely difficult decision, for me, whether I should try the anti-thyroid meds first, or what seemed so much more drastic to me: The Radioactive Iodine (which is what my endo doctor recommended). I had changed my mind back and forth for several days. I was concerned because there had been no MRI or ultrasound of my thyroid. My endo explained that usually with a thyroid nodule or growth, the person (patient) would have hypothyroidism, rather than hyper. And my tests showed definite signs of hyper.

After a lot of online reading and talking to someone younger who has had the same procedure, I decided to go ahead with the Radioactive Iodine and took the capsule (after hesitating for a moment) this morning.

So far, so good. I am glad to have the decision made and over with. I feel okay so far - it's been four hours. My legs are a little achy and there's a sort of metallic taste in my throat (which is probably the iodine), and my ears feel a little strange. But, I haven't had any nausea or problems.

Here's a website that I found, that answered a lot of my questions: http://www.mythyroid.com/iodinehyper.html

Wikipedia also has some extensive info on Graves disease.

Good luck to you.. I'll post my progress with my RAI. Please let us know how you're doing..

[911*]

Many thanks for your info - much appreciated. I am concerned that everyone seems to have an iodine uptake test and/or scan prior to any treatment being decided upon; wheras I have not had this or any other test (except a blood test) and am having RAI treatment next week!!!! Hence my confusion/concern. :confused:
I hope your road to recovery is a smooth and successful one ;)

[GeekLady]

I would insist on having an iodine uptake test first. I had all sorts of blood tests: TSH, T4, T3, and they indicated Graves, but the uptake test was done also and was sort of a measuring stick to see how much RAI I would need. If they don't want to do an uptake test, have them explain why or see another endo doc. Mine explained things thoroughly and for everything that I couldn't remember or simply couldn't take in at once, she explained a second and even a third time.

I had a panicky feeling the night of (after) the RAI treatment, kicking myself for not getting a second opinion before proceeding a permanent thyroid - um - meltdown. I wouldn't want you to feel forced into having this treatment unless you are absolutely sure. I was 90% sure I was doing the right thing and still experienced anguish over it.

Today (two days later), I feel considerably better. I was lethargic yesterday and still had some residual aches in my muscles or bones. There is less of that feeling, so far, today so I'm getting on the treadmill. I feel calmer and less fuzzy-headed. So I'm 95% sure I did the right thing. ;)


GeekLady

[dilynne]

Anyone with Graves disease: Along w/ your other meds...get on a calcium WITH VITAMIN D supplement immediately! 1200 calcium/400 VitD. Come back in three months and tell me you've reached equilibrium. DON'T OPT FOR RAI (cheap fix for your insurance company.....and you'll feel like crap for the rest of your life)

Spread the word...

[nasdaqphil]

....and only if it worked....Vitamin D has nothing to do with Graves, well, not symptomatically at least. My vitamin D and Calcium are perfectly fine but that did nothing for the raging TSI antibodies that are attacking my gland.

Having all your vitamins and minerals in line will always help but surgery or RAI are the only cures for Graves.

[Andros]

Many thanks for your info - much appreciated. I am concerned that everyone seems to have an iodine uptake test and/or scan prior to any treatment being decided upon; wheras I have not had this or any other test (except a blood test) and am having RAI treatment next week!!!! Hence my confusion/concern. :confused:
I hope your road to recovery is a smooth and successful one ;)

I think you should have the radioactive uptake scan because if it turns out you have cancer, you would want to have surgery instead plus you need to know because the treatment "if" you have cancer departs from the usual treatment.

Let us know. And welcome.