[Stymie]

#1059708

Hi Everyone!

I was diagnosed with hyperthyroidism in August 2012. My Endo never told me I had Graves disease!! He called me (actually his nurse called me) after i had the uptake test to tell me I was hyperthyroid. Had the Rai done in September.
I just found out yesterday after I requested my results from everything that the diagnosis on the uptake test was Graves. Never once mentioned that to me and never asked about my eyes or sat me down to explain what this means to me and my health!!

So i have a few questions for you guys.

Once I had the RAI done, Do I no longer have Graves?

The endo did not do antibody test, should i have done?

These are just a few questions rattling around my head. Im just so confused now.

Please help!!

Thank you!

[Kimberly]

#1176938

Hello and welcome! Graves’ disease is an autoimmune disease that occurs when the body’s own immune system starts attacking healthy tissue. The primary targets are the thyroid (which causes the hyperthyroidism), the muscle/fat behind the eyes, and more rarely, the skin on the front of the shin. The RAI treated your hyperthyroidism, but not the underlying autoimmune disorder. Eye involvement can occur at any time, so this is something to be aware of, just in case you start experiencing symptoms (dryness, bulging, double vision, swelling, grittiness, etc). If you do start experiencing eye symptoms, you will want to visit an ophthalmologist who can guide you through the monitoring/treatment process.

Many docs use antibody testing to diagnose Graves’, instead of the uptake test that you had done. Since you already have a diagnosis, there are probably only a couple of situations where you might find antibody testing useful. First, if you become pregnant, the latest guidance from the American Thyroid Association is to test antibodies (TRAb) at 24-28 weeks for all women with a history of Graves’ (regardless of treatment option), with a referral to a maternal-fetal specialist if levels are too far out of range. Also, for patients who have eye involvement, some doctors use antibody testing to monitor the course of thyroid eye disease and to determine when the condition has stabilized.

Hope this helps!

[Stymie]

#1176939

Thanks Kimberly.

I am now just doing some research on the subject and getting up to speed with everything. My eyes have been bothering me and I had googled eye problems and hypothyroidism and there are some articles out there about the eye issue with hypo. Since I still am hypo. I have been on 100mcg for about a month and I’m not feeling well and suspect its the levothyroxine not agreeing with me. I had made an appt to see my endo, but now I’m going to cancel it as I don’t like this whole thing that happened where he didn’t give me all the information I needed as well as he doesn’t like to talk
to me on the phone. Just makes his nurse do it.

So I made an appt with an eye care institute to test for TEDs. I’m trying to keep my stress level down and eat right and exercise at least a little bit everyday. But I feel horrible everyday and just want to lay in my bed and do nothing instead.

So at least I know this disease is still raging inside of me and I need to continue to be vigilant about my health.

Is there anything else I should be doing to help my body?

Any advice you can give to help me sling in this process?

I’m still so flabbergasted at this diagnosis, I can’t seem to think clearly.

Thank you again for any help you can provide.

[Kimberly]

#1176940

Hello – This is a really important period right now as you work to tweak the dose of thyroid hormone replacement, so definitely make sure that you have a “Plan B” if you decide to cut ties with your current endo. Some general practitioners are comfortable helping patients through this process, but if you need to find another endo, waiting times can be lengthy in many parts of the country.

If you are feeling poorly, it can be helpful to be very specific with documenting your symptoms and also to get hard copies of your lab work. Make sure that your doctor’s dosing recommendations are based on Free T4 and T3 – and *not* TSH, as TSH can remain suppressed for quite some time post-treatment.

Rarely, patients can react to the fillers/dyes in color-coded replacement hormone tablets. If your doc suspects this is what’s going on, he/she can prescribe the non-color coded tablet and adjust the # of daily pills to get you to your current dose of 100 mcg.

The one other thing that I would add to your list of minimizing stress, exercising, and eating right is to not smoke and to avoid exposure to second-hand smoke, as this can increase the risk of eye complications.

Take care!

[Stymie]

#1176941

Thanks again Kimberly for all your help.

I saw my primary yesterday and talked with him about what was going on and he did do some blood work. Tsh t4 t3 . Wrote me a script for brand synthroid. And made an appt for a new endo but won’t get in to see her until April. Do my primary said I could come back in a month to have my thyroid checked again.

I do not smoke anymore ( been over 2 years now) but my husband does smoke and I have always asked that he does not smoke around me but I will stress that again and explain to him why.

Thank you for all your help!! I hope I can get on the road to recovery soon and start feeling better!! I plan on upping my exercise in the next week too and hope that will give me some relief!!

Thanks again!!

Diane

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