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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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#1 | ||
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Senior Member
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I'm so sorry you're going through this. I only know a few minor things you might check. First, there's a lag in the TSH test. The TSH test tells you how your thyroid was functioning six weeks ago--at least, this is what I've read.
Second, a straight T4 test may not be accurate in the presence of estrogen and liver disease: http://www.auburn.edu/~deruija/endo_thyroidfts.pdf Your endocrinologist probably did a free T4 test, which would be more accurate. Do you happen to have your lab results? Abby |
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#2 | ||
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Grand Magnate
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Tracey, Did your doctor even test you for the TPMT test BEFORE putting you on Imuran?!! If you're lacking in this enzyme, you could still have Imuran in your body. Have they done extensive liver studies to make sure your liver is functioning well now?
http://labtestsonline.org/understand.../tpmt/tab/test When the liver gets toxic, it can have trouble detoxifying you of other drugs, such as Cellcept. It's possible that your body can't handle big drugs right now. I have no way of knowing, only your doctors can figure that out! The body clears toxins via the liver and kidneys (it varies according to what drug you are taking). Your endocriologist could do a comprehensive chem panel, urinalysis, etc. to determine your overall metabolic health, plus how your thyroid is doing, like Abby said. Also, liver toxicity can also cause problems with cholesterol. It can create a Vitamin B12 deficiency (B12 is stored in the liver). And so many other problems that could contribute to your overall "lack" of good health. Please don't give up hope! I just think you need a doctor or two to help you figure out what your current health is and what is contributing to you being worse. It's quite possible that it's more than MG and your thyroid causing you to feel worse. Please, you need your liver! Unless someone figures out exactly what is going on, how can you really know if your liver can handle drugs? I hope I didn't stress you out. Do you have someone who can go with you to a doctor to help you with all of this? Sometimes it really helps to have someone be your advocate so that you don't get more worn out just trying to get help. Please let us know how you're doing, okay? ![]() Annie I have to add that some thyroid patients do better on thyroid drugs like Armour Thyroid and Nature-Throid. What drug are you on? |
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"Thanks for this!" says: | MzTracey (01-23-2013), pingpongman (01-23-2013) |
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#3 | |||
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Member
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I agree with Annie, please take someone with you. I encourage everyone with serious medical problems to take someone with them but not to sit in the waiting room. My wife goes to all my appointments and the first thing we do after is say "what did you hear". It works real well.
Mike |
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"Thanks for this!" says: | Anacrusis (01-23-2013) |
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#4 | ||
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Junior Member
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I have had alot of blood work since being off of Imuran which was in May. All liver function tests are normal. My gastrointestinal doctor has been checking up on it as well as my neurologist. I as well get the basic blood panel test before each iv infusion as well. All is well except red blood cells are a little low. Cholesterol is good. I was only on cellcept for 3 days and was in September. I keep thinking this is my thyroid doing all this. I feel a little better with the levothyroxine with some things but the heaviness in my whole body is still there. I had taken this medication once before and stopped it because it made me jittery but as bad as i was feeling these last few months i was willing to try anything again. Im afraid though because my tsh and t3 all come out very normal but i was having the same exact symptoms i had before i got diagnosed with the hashimotos thyroiditis. What if it isn't thyroid, and im taking this medication? The doctors as well point alot of my aches, pains and issues to prednisone. Ive been on it since i was 17 and i am 36 now. I just dont know what to do anymore. I always have someone go with me to all my dr appts too. I am never alone in that respect.
Thanks for taking the time to read and respond to this.. im really trying not to give up hope but its hard when you feel like no one wants to help or listen for that matter. |
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#5 | ||
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Senior Member
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If your thyroid is not really functioning too slowly, and you're taking synthroid, then you'll go hyperthyroid, and that will show up on the blood tests. Typical symptoms of being slightly hyperthyroid are (like you say) jitteriness, insomnia, and your heart beating faster than usual.
You will want to be tested to make sure you're not hyperthyroid, because they tell me that being hyperthyroid makes MG worse (though that may only be the case when you're hyperthyroid because of an autoimmune attack--I don't know). Also, being hyperthyroid over a long period of time will deplete your calcium and weaken your bones. Abby |
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