[Anonymous February 5, 1997 at 11:56 pm Post count: 93172]

#1057019

I was diagnosed November 1 with Graves and started taking methimazole. I was taking it three times a day–but my blood tests went almost to normal so fast that she reduced it to 5mg every 12 hours. I have felt pretty good–but lately I’m getting forgetful again, and have an occasional rapid heart beat. Does anyone else experince this? I guess good days-bad days would describe it best. What are beta blockers? is that something that is routinely prescribed? I probably could go on–but my almost half a brain has bailed so Ill just say I enjoy the board very much!

[Anonymous March 23, 2006 at 5:51 pm Post count: 93172]

#1165018

Hi mgk,

One thing I thought I should mention to you is that the antibody test is not a good indicator of “how sick” we are. The antibody levels rise and fall for no well-understood reason, and they do not give a conclusive result for anything, really. If the antibodies are in our bloodstream, we have Graves’. If not, we might still have Graves’ Disease, but the antibodies may be in a “waning period” where they are not seen. If we do have them, it makes no difference whether we have a little or a lot, that does not appear to directly correlate to the thyroid hormone levels.

The way we can tell how sick we are is by our TSH and T4 levels. That is the only test that can tell you how far off normal you are. Very high? Very sick. Very low? Very sick.

We would all like to know exactly why we have Graves’. Unfortunately, no one has yet been able to determine anything, other than (my favorite explanation, thank you Kay) “a genetic disposition with an external trigger.” In other words, the best our scientific community can come up with is that we have some familial history of either thyroid disease or autoimmune disease, and at some period in our life we experience a “trigger event,” which could be stress, could be environment, they’re not quite sure, but something triggers the antibodies to develop, and then we are sick. That does nothing to explain those who have NO genetic disposition, unfortunately. The truth is that we really do not understand the mechanisms of autoimmune disease. It doesn’t make sense that our body would attack itself, and yet that’s what happens. There’s nothing we’ll be able to do for ourselves that will absolutely “prove” what caused it for us, because that requires a wide study with conclusive results, and nothing like that exists at this point.

I asked my doctor how it happened for me, and he asked if I was near the Three Mile Island accident — which, it happens, I was. Still, MANY people I know were there, and hardly any of them have Graves’, so I don’t think that is the complete answer. Also, I didn’t have active symptoms until nearly 20 years later, so how much could it have affected me? The truth is that anyone who tries to tell you how you got Graves’ is guessing.

It’s great that you recognize how Graves’ can affect your emotional state. You may want to get a book (from Amazon or your local library) on thyroid disease in general, and Graves’ in particular (check our recommended reading list), to help your wife understand what’s going on. You can perhaps highlight sections that are relevant to what you’re going through and have her look at them. I know it’s difficult for those around us to understand that we won’t get well quickly. Everyone hates that — mostly us! But patience, apparently, is something we all needed to learn, because that’s the thing we MUST use to get through this. The pattern for most of us is that we have been the caretakers, we have been the ones to step up for everyone else, and we must help others understand that now we need that same level of energy just to keep ourselves going. We don’t have a lot to spare until we are well again, and that takes a while.

Wishing you luck! Glad you found a supplement that helps your symptoms, but I must reiterate to everyone that we need to tell our doctors about everything we take — some supplements can have an affect on our levels.

~Ski
NGDF Assistant Online Facilitator

[Anonymous March 24, 2006 at 6:57 am Post count: 93172]

#1165019

I too was in PA for the Three Mile accident. Just thought I would share cause that was one of the first things my endo asked me.
Thanks

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