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Thanks so much for sharing your stories here. I was diagnosed with Graves’ a month ago, and thank God I did my homework before going to the endocrinologist. I had my first appointment today and he automatically recommended RAI. When I told him I wasn’t going to do that, he warned me that ATDs produce side effects in 10% of patients. 10%!!! Thank you sir, I’ll bet on being on of the 90% who turns out fine. I’m looking for another doctor now.
Well, I went to my current endocrinologist today, and he refused to keep me on methimazole. He just kept saying, "I won’t do it" no matter how I tried to convince him. He said he has seen bone-marrow suppression from methimazole and that it is "not dose specific" so he would not agree to me staying even on a low dose long-term. He said RAI was my only option with him, and that I need to find another doctor if I want to stay on methimazole. He did agree to give me a one-month prescription to tide me over till I find someone new as my blood work shows definite Graves Disease.
I had never heard of bone-marrow suppression as being a possible side-effect of ATDs. Is this true? I knew it could suppress the immune system, but I thought that was easily remedied by getting off the ATD. Bone-marrow suppression is much more serious, is it not?
I guess I need to find a new endo now. I live in Houston, TX, by the way, in case anyone knows of a good one here!
Many thanks SO much again for everyone’s help. I deeply appreciate it.
Agranulocytosis can also be referred to as "bone marrow suppression," so I think the two of you might be talking about the same thing. There was one doctor at a conference a few years ago who said that once he had seen this particular side effect manifested, it spooked him into completely rejecting long term use of ATDs. My understanding, though, is that if the symptoms are identified quickly, stopping the medication immediately reverses the effect. I believe that, in this particular case, the patient went on taking the medication for too long before being successfully diagnosed, and so it became life-threatening.
It’s nothing to play with, that’s true, but his opinion, and his feelings, and his fear, are not necessarily reasons for you to change your own opinion, your own feelings. It’s something to consider ~ ATDs are not completely harmless, and we should understand that going in. But I don’t like hearing that a doctor has refused any sort of treatment to a patient who is willing to accept the risk for themselves.
Thank you, Ski, for the information. I have found 2 new endocrinologists and have appointments in April and May. I hope one of them is willing to help me.
Glad that he was willing to give you a months worth.
SKi, I have a question. Can PTU also cause that bone marrow supprestion or just Tapazole? If not then why don’t dr’s just put people on PTU?
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