[buckeye]

#1019075

Hi! I have been recently diagsoned with Graves’ Disease and right now on RAI treatment. Everyone tells me that after the treatment you exprience many unpleasent side effects and that the next month will be hard to adjust, physically and emotionally. I am leaving for my freshman year of college and scared of having to adjusting on being on my own and now I have to adjust to having Graves’ Disease on top of that. So I would appreciate any advice or tips on how to live and adjust with Graves’ disease. Thanks!

[Ellen_B]

#1069045

Since I have never been treated with RAI for Graves’ disease I cannot give you my first hand experience with RAI treatment. The responses I have heard from Graves’ patients who have had RAI were of two types. One group wished that the RAI would work faster so they could get rid of their hyperthyroid symptoms. Individuals, however, in the second group had already become and felt hypothyroid.They had gone to their doctor and had their thyroid hormone levels checked with a TSH test. The TSH test showed that they were still hyper and so were sent home and asked to come back a month or so later.

It is important to understand that it takes a while sometimes for the pituitary to start functioning again. Because the high thyroid hormone levels have suppressed the activity for so long of the pituitary, it may take a month or two for the pituitary to get going again and register low thyroid hormone levels. For that reason if you are being checked in the first couple of months and you feel hypothyroid ask your doctor if he should do other tests other than the TSH—do tests which do not involve the pituitary but check the thyroid hormone level directly –such as the freeT4 . In this way you could be put on thyroid homone replacement medicine as you soon as you become hypothyroid and would try to avoid going through a maybe unnecessary period hypothyroidism.

If you wish to speak to me directly leave a message on our toll free number. Emailing the Graves’ disease gmail will reach me too.

Ellen Brightly Administrative Assistant Graves’ Disease Foundation 400 International Drive Williamsville NY 14221 Toll Free -(877) – 643-3123
Email: Gravesdiseasefd@gmail.com
Website: http://www.NGDF.org

[Bobbi]

#1069046

Hi, buckeye. Congradulations on starting college! It should be a great adventure for you.

I have been "living with" Graves disease for the past 12 years. What it amounts to (for the past 11 or so years) is taking a single pill every morning, and getting my blood tested for thyroid hormone levels about once a year. I had RAI as a treatment. So, you see, living with Graves can be very simple. We are very lucky, I think, to have a replacement hormone that works like our body’s own T4. It works much better for us than insulin injections do for diabetics, because it is released into an appropriate form (T3) as the body needs it.

I suppose I shouldn’t over-simplify my situation: I also had pretibial myxedema and I developed the eye disease. Both of those conditions were added complications. But I am not plagued by them any more. And most people don’t develop either of those two complications.

So, I think you should be aware that complications can occur, but you should expect to get well again. You can expect to have your thyroid levels monitored from time to time (at least once a year). And you should expect that if you ever become pregnant, that your levels will have to be watched even more frequently, because pregnancy can put demands for more or less hormone over time.

Do cut yourself a bit of slack for the first month or so after your RAI treatment. It takes time for RAI to work, and it takes time to find the right dose of replacement hormone for you. During that time, your body still won’t be "normal." But once you do get to the proper dose, and your body has had a chance to heal, you can expect health to return.

Wishing you good luck, and good health soon.

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