[Anonymous]

#1127350

I had RAI in Sept. ’97 — blood tests every 6 weeks and gradually worked up to 1.35mg/day of Levoxyl. My endo (who is pathetic) and am going to see my general practitioner next time, told me not to come back for 6 months that my thyroid was normal now. He said I shouldn’t have anymore problems. But that’s been 4 months and I’m very anxious inside. Haven’t been able to find ANYONE who understands. Such a hopeless feeling. Thank God I don’t live entirely on feelings, but seems they’re right there on my sleeve and do not like it one bit. I’ve never been this way —

[Anonymous]

#1127351

you are not alone, people around you wants to help just need a chance, i know its hard, you want to be understood but dont want to feel weak either.try to be yourself. dont worry too much. the most people know what you are going thru, the more people will want to help. i am here for you. my son has graves for 6 months now. this hit the whole family, i wanted to help but didnt know how. we have now counseling to help us talk to each other. he became very offensive, like if nothing matter to him, but later i learned that he was reaching for help, everytime he will do something to hurt us, he was calling for help. now i just dont worry about little thing, his grades have improve from ALL F’s to only 2 out of 7, he even got an A in math. that shows he is trying very, very hard to overcome this moments. i wish only this went a little bit faster, but an improvment is an improvment and some times pushin too hard just gets the opposing results of what we want to get. patience is the key and perseverance is his best alied.

[Anonymous]

#1039287

Hi taxman,

Anti-thyroid drugs are usually used for a period of one to two years, continuously, with dose changes to accommodate fluctuating thyroid levels, and ultimately ceased in order to see if the body will maintain the “euthyroid” state (normal levels) on its own. Some people have taken them longer, some have taken them on the “block and replace” therapy which is practiced in Europe (I believe) and Japan most frequently. It doesn’t seem to be normal practice to withdraw them completely as early as your wife’s was withdrawn, but then her thyroid levels looked VERY hypo at that point. This disease acts differently with every individual, the drugs act differently with every individual, and it’s as hard for the doctors as it is for us. I think the thing is to remain ever vigilant to our symptoms and make sure WE understand what our body is going through.

As far as the palpitations and gagging, it SOUNDS LIKE (to me, the NOT doctor person) a rush of hormone. The symptoms can feel like hyper and actually be from a fluctuation of hormone level, so it’s difficult to say that her overall levels are “likely” to be hyper or hypo, just that she should make sure she is carefully monitored.

One other point — it has been noted here that when people have abeen taken off one of the anti-thyroid drugs and then had it re-introduced, it is possible to develop an allergy to the drug itself.

All things considered, she should just make sure she’s in touch with her doctor. If you aren’t so confident in the doctor, then perhaps it’s time to do some checking around for one that will be responsive to her changing symptoms.

One more thing — when we are in a hyperthyroid state, we have extra thyroid hormone running through our bloodstream. Even under the effect of anti-thyroid drugs, it can take nearly 6 weeks for any extra hormone to leave our bloodstream. That’s why many doctors will recommend blood tests every six weeks — and also why they usually wait 6 weeks to see how the drugs are doing.

I hope this helps!

Good luck, good health to your wife, and GOOD for YOU, helping her like this.

-Ski

[Anonymous]

#1127352

Thanks for the reply re: ATM — What does the Mayo book say about what to look for in your emotional state? I am very hyper, but have been a very active person all my life. Seems difficult at times to keep things organized and feelings – like I said – are on my sleeve. My mother was diagnosed years ago with a mental disorder. Am wondering if it could have been Graves’? I have not decided to seclude myself from society as yet, though, like she did. I’m very active at square dancing, church, work full time at a very stressful job. So feel pretty normal in that respect.

[Anonymous]

#1127353

Taxman, thanks for the kind comments about the facilitators of this board. Your wife is fortunate to have your help and interest.

A number of people on this board have chosen to remain on ATD’s longer than the usual 1-2 years when they did not appear to be achieving a remission. The important thing is to learn everything you can about the possible long-term effects vs. the possible consequences from the other treatments, and work with your doctor (or get a new one) to manage this disease according to your preference. Since we have no crystal ball to determine how your wife will respond to each of the treatments, the trick is to determine which risks are most acceptable to you both.

This is a time to work very closely with her doctor to achieve stabilization. It can be tricky for some people, but well worth the effort. As you said, there are many problems which arise during the treatment process that don’t have easy answers.

Best wishes,

Dianne W

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