[NZCate]

#1058706

Hi. I am in Christchurch, New Zealand and have been diagnosed with Graves for about a year and have been on carbimazole at various doses. Now my doc has announced that I’m fine and he wants to wean me off rather than go down the RAI route. That would be great but I feel awful. All my symptoms and more have come back but the blood work shows nothing. I have the book by Elaine Moore but can’t find any explanation. I’m wondering is there one? I know I’m not just a freak of nature as I’ve heard of other people having the same issues. But why?

And for a humourous note my cat has also been recently diagnosed hyperthyroid and is lining up for RAI. It’s going to break the bank but I love her and she is obviously trying to empathise with where I am at. Gotta love her! ” title=”Confused” />

[Kimberly]

#1169478

Hello and welcome – wow, what a coincidence about your cat!

I just mentioned in a previous post that the latest guidelines from AACE and the ATA recommend testing antibodies (TRAb) prior to withdrawing anti-thyroid drugs in order to determine the patient’s chances of remission. These are U.S.-based organizations, so the protocol in NZ might be different. However, this might still be worth bringing up with your doctor.

If you don’t feel right, keep fighting until you find a doctor who will treat both your labs *and* your symptoms. A symptom log might be helpful; the more specific that you can be, the better. For example, "I feel keyed up" is not as helpful as "I can only sleep for three hours a night and my heart rate is beating 150 bpm when I first wake up in the morning."

Hope that you can get some relief!

[NZCate]

#1169479

Thanks for the advice Kimberly. Much appreciated. I have just been for a pile of blood tests. Meantime I am wondering whether my current symptoms are actually side effects from the carbimazole I am on. Side effects are so frustrating!!! But I have no proof and my doc wasn’t keen (although accepted the possibility) so I just keep going. It just amazes me more and more how much Graves can screw things up for you.

[Kimberly]

#1169480

Hello – Yes, minor side effects of carbimazole can include nausea, change in taste, joint pain, itching, and hives. Some patients can get relief from the itching/hives by using a lower dose or by using benedryl in conjunction with the ATDs. If the side effects are really interfering with your quality of life, you could go with one of the other treatment options…although *all* of our treatment options have risks and benefits!

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