[Anonymous]

#1078458

If you feel strongly about getting a second opinion then by all means do that. There is nothing wrong about getting a second opinion especially when you have some doubts. Afterall this is your child that they are doing these things to and you want what is best for her.

Sometimes it is the filler in the medicines that can cause the side effects and that is way switching to another type of medicine will help.

I do hope for you daughter’s sake that they help her soon. I remember what it was like when I was very sick and I can’t image how it would be at her age.

Good luck and keep us posted on what is going on.

Diane B On-Line Facilitator

[Anonymous]

#1020810

My daughter has been diagnosed with Graves since she was seven. Since last year when she entered puberty (13) she has been unable to regulated her thyroid. She was put on Lexapro for Anxiety. Which has enabled her to return to school. 6 months ago the specialist told us to taper off on the Tapazole because the thyroid seemed to be burning out. This was not the case. By September she lost 25 pounds, developed pleurasy. She recovered from the pleurasy but her TSH was now .01. She fainted in the store and she was in the emergency room the next day. The specialist put her on Inderol to control the heart rate and increased her dosage of Tapozol. She then developed a reaction to the Tapazole (Itching all over)this seemed odd to me after being on it for seven years. We stopped the Tapozole and have her scheduled for radiation therapy next week. I have tried to get a second option but this seems virtually impossible in such a short time. My question is should we not be trying a different medicine before resorting to the radiation. She has not been in school for two weeks. She is very thin and suffering from all the hyper symptoms. We are up to 40mg of Inderol every six hours.

[Anonymous]

#1078459

I have a slightly different “take” on things than Diane, if only because it sounds like your daughter is seriously ill right now. If that is the case, you may not have the luxury of waiting to get a second opinion.

So, I feel a message of encouragement is in order: RAI has been demonstrated, over time, to be relatively safe. By that I mean that researchers, scoring over fifty years of RAI experiences, have not found that it leads to long-term adverse health consequences. Yes, we need to go onto replacement hormone (typically) after RAI. But replacement hormone, in the proper dose, is safe. And effective. Millions of people lead healthy lives while on replacement hormone. Hyperthyroidism, on the other hand, has been shown to have significant long-term adverse health consequences, even at minor levels of hyperness. If the medication is no longer working to keep your daughter well, that is a serious problem for her, long term.

I know the decision is never easy. It isn’t easy when we are making the decision for ourselves; making it for a child must make it all that much harder. I wish you good luck with your decision-making, and I wish your daughter good health, soon.

Bobbi — NGDF Online Facilitator

[Anonymous]

#1078460

I’m curious. Did the doctor say the fainting had to do with the extremely low TSH level? After RAI, my levels dropped from .21 to .02. I’v since had worse symptoms of dizziness, mini-blackouts, a feeling of wanting to throw up (but not sick to my stomach), memory loss, and a hard time thinking of simple words at times.

If this is the case, maybe I need to have my levels re-checked now instead of in 3 weeks.

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