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  • Anonymous
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      As you can probably tell from my user name, I also have a daughter, a bit older at 20, who was diagnosed at the end of November with Graves.

      She was initially treated with Tapozole (sp?) and broke out in hives after about four weeks. Her endo put her on PTU without a break from the Tap. After the four weeks of Tap,the doctor reported that she was about 90% into remission. The first batch of hives went away with round the clock Benedryl. After about five weeks on the PTU, she broke out in hives from the PTU. They were some pretty significant hives, giant hives and very uncomfortable. I did learn that hives can also be a *symptom* of a thyroid disorder. At this point, the endo said that we had no choice other than RAI.

      I had very mixed feelings about this. First, she is very young to have a procedure done that will affect the rest of her life. And I also have the strong feeling based on reading that the medical community is on the verge of understanding and treating all auto-immune diseases, which is what Graves actually is.

      I think the reason I let the endo rush us into RAI was that I had a life threatening allergic reaction to an antibiotic resulting in hives and breathing difficulties that lasted for months. I would probably be dead if I had not sought treatment at the Mayo Clinic. So seeing these hives on my daughter was traumatic. I reacted to those when now I wish we had waited it out, treated with Benedryl again, and tries a lower dose of the ATDs.

      When she had her first labs at four weeks, she had gone so far hypo that her total THS was 92! Endo started her on a small dose of Synthroid, but the next day she called sobbing at 7:00 from muscle pain. She couldn’t even get out of bed. She is away at college. My husband and I raced up to Wisconsin to bring her home to rest and de-stress from school. The endo added a small dose of Cytomel (sp?), but she is still experiencing significant pain, weakness,and headaches from being hypo.

      I understand that the fist year will be one of adjusting her doses and meds. I know it has been done for years to countless people, but medicine is always inproving treatments. I know that people here will disagree with me. But, honestly, I wish we had never gone this undoable route with the RAI. I advise you to procede with caution and to listen to what you really feel is right for your daughter.

      I wish you and your daughter wisdom and good health.


        Post count: 93172

        My 9 year old daughter (diagnosed at age 4) has been on meds the whole time except for about 6 months with a “remission”. Her Ped. Endo doesn’t want her to have RAI until we get to and possibly through puberty. Good luck!

        Mom of a little warrior

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