Hi All! It's been awhile since I have been on here due to the fact that ive been going through alot. I was on imuran for about 15 years. On 150 mg daily. My M.G. specialist raised the dose to 200 mg daily. Well lets just say that it took less than a year for it to really affect my liver. I began feeling terrible all M.G symptoms were bad. I turned yellow even and after many er visits, blood tests and finally a great liver doctor that did a liver biopsy figured out the dosage of imuran was to high for me and had my liver at toxic stages. In May I was completely taken off Imuran and felt better. I was managing on 28.5 mg of prednisone and ivig treatments every 3 weeks. I have tried cellcept since because my M.G specialist said I need something other than ivig to get me to be able to lower the prednisone. Well cellcept made me feel horrible! I was weaker than had been so we stopped it after only a week. I have also been seeing my Endocreinologist because a couple of years ago I was diagnosed with hiashimotos thyroiditis. My blood levels have been normal but alot of symptoms have been pointing to my thyroid acting up. I went twice to the endocrinologist and finally he put me on a small dose of levothyroxine. I feel better in some ways but just the heaviness i feel is terrible. My arms and legs are so heavy. The specialist as well as my local neuro want to try imuran again but start extremely slow and not go any higher than I was before. So at this point I dont know if it's M.G or thyroid issues or both. I know blood tests aren't always accurate especially with thyroid. Any suggestions?? I feel hopeless!

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

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?

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

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.

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

I've had Hypothyroid since I was 8, and learned to feel when my synthesis needed to be increased. Since being diagnosed with Mg 3 years ago, those signs have faded away. I just had my levels checked and definately needed an increase. Since about 2 weeks on my new dose I've had much more energy (not more strength). People with the "normal" Tsh levels are wide 2-8 I believe. My body only runs normal on the very very low side of that spectrum. So find out what the levels you are at. Maybe you aren't on a high enough dose to notice a difference? Also, I get a bit jittery and have slight palpitations with every increase to my thyroid dose. They subside around the same time it kicks in.
One other symptom I've always had when I'm too low on my meds... Carbohydrate cravings (extreme) and when I'm normal, my hunger and cravings are much much more moderate and normal. Also long term thyroid will cause dry brittle hair. So if you notice your hair is suddenly very dry and frizzy it's time to get checked!
I hope this helps and finds you string and well.
Jess