Graves' Disease Support Group
Graves-Basedow disease is a medical disorder that may manifest several different conditions including hyperthyroidism (over activity of thyroid hormone production), infiltrative exophthalmos (protruberance of one or both eyes and associated problems) and infiltrative dermopathy (a skin condition usually of the lower extremities). This disorder is the most common cause of...
Not so good today. He most agreed with my first endo. He said that I was right and that even though your TSHis suppose to be low when you have Graves it was not suppose to be as low as mine. My last TSH was0.006. Something was said about that it could cause heart damage.He told me that mostendos concentrate on diabetes bacause that was really where the money was. He was wondering why she had not talked to me about RAD. I told him wouldn't do any good cause I prefer no radiation. He thinks 10 mg is right on the Meth, On&on&on but you get my drift. So what do we do now. He won't treat me cause he is an GP. He said that if I was hypo he would but with graves there was to many ups and downs.So where in the heck do I go from here.
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Besides the GP is wrong that the the low TSH causes bone loss. It's when we have higher than normal levels that will cause bone loss and heart problems.
http://elaine-moore.suite101.com/uk-study-shows-that-low-tsh-doesn-a264769
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I don't remember you whole history either so apologize upfront.
I am confused as to why you don't give the meds at certain dose a chance. It seems you are not giving them enough time to do their job and then let you body adjust.
I in 6 months I have been on I think 4 different doses tweaking as we go. Mostly because my numbers were so outrageous in the beginning and didn't budge. We are holding somewhat steady but still tweaking a bit here and there. He said it could take up to 2 years for all to adjust and some symptoms may come out later in time but actually are a result of when I was very hyper. I have seen some that recently.
I agree that you can not keep you TSH undectable or out of range and that with meds it will come in range. I am proof mine did just my last blood test. I was undectable for almost 5 months and then slowly rose. I am just barely detectable now but he is happy that it is in range. So now we hold on and retest again in 6 weeks.
I am just saying take a breather and give it some time:)
I don't think 6 dosing changes is that bad quite honestly. It does take your body a while adjust to the meds and a new "state". I really think you didn't give it enough time. I also think that even though you T's were in place your TSH was not and that needs to be. I know they say you can't judge Grave's by the TSH but your TSH does need to be in a normal range. Al low TSH (hyper) can indeed cause heart issues bone loss.
I know that based on my results my doses have been changed in that same time frame and the readjusted when labs were not in place. So I hear ya.
I may have misunderstood and thought you were changing does as well as the MD not giving things enough time. Sorry.
I do hear you on the "this is the best I felt"!! I felt the best about 2 weeks after I started meds when my numbers were still outrageous but the shaking and "hotness" went away. But I understood that even though I felt great I could not continue with levels that high.
I have googled till you can google no more and just read that low TSH can cause long term issues. One can not say it does not and the GP is wrong.
Again not trying to put a rebuttal to what is said just giving my piece.
Snippy my case of Graves is a tough one and dosing has been crazy but I am giving it a shot and sticking with the same MD. I have been able to consult other MD's on the side about what my MD has said, my regimen and thoughts. I have also told my MD and these others what folks have said on here and they are not all that keen of some of the statements and that they can misleading. As I said before each person has to research and read what they want and take what they want.
I just think Snippy has had a lot of stressors in her life and am suggesting to her to let the dosing by the MD ride and see what happens. As I mentioned some of the syptoms you are experiencing may not all be due to the lab results or that point in time.
Again not trying to contradict but just saying we all don't fall under a blanket statement:)
There are no physiological implications to TSH.
Any issues related to the heart and/or bones relate to the actual thyroid hormone levels. Levels that are too high or too low for the body's needs are what cause trouble.
My first 2 endos were just like the doctors that Snippy has seen - they kept focusing on my TSH and prescribed doses that were too high for me. I was horribly hypo under their care.
Being hypo stresses the body. Stress can cause an increase in antibody production. Well, antibody production is what got us sick in the first place.
My now-former GP proved clueless as well.
I met my current thyroid doctor, an internist, one month after I entered remission.
She agreed to monitor me to make sure the remission "stuck".
Lo and behold, I soon joined the 20% of Graves' patients that go hypo after remission.
My TSH at this time was .011 but, my FT4/FT3 were below mid-range and I had over 20 hypo symptoms.
I had almost the exact same labs when I went off 1.25mg methimaxzole and met endo #3. She wanted me to go back on methimazole and take 5mg!!!! No thank you.
My current doctor has worked with me to optimize my levels. My TSH continues to be suppressed.
I heard the magic words I knew I had to hear from my doctor:
"We know to ignore TSH in Graves' disease".
I have some people already blocked here on several forums because of my info getting shot down. I had to sign off here at DS and go public to see what was being said here at this thread.
Yes, I definitely back up my research with scientific studies, med journals, and articles. I do not give out false info. There's no way I would be able to moderate at another thyroid board and participate on it and give out 'false' info. :-(
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I am so sorry to read about your dog. I have a dog as well as I think the world of her.
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