What is Graves Disease
Graves-Basedow disease is a medical disorder that may manifest several different conditions including hyperthyroidism (over activity of thyroid hormone production), infiltrative ex...
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Howdy!
While it's always nice to meet new people, the reason for meeting new people on here isn't necessarily that nice - it means there is yet another member in the "Graves' club". I know it is possible to live well and have Graves' disease because it has happened to me. Whether a person chooses meds, RAI or surgery, THE MOST important thing is to partner with a doctor that knows how to medicate. There are way too many doctors out there that rely on TSH for dosing decisions. This is dead wrong. Here's the reason why: Graves' disease is an autoimmune disorder - our immune system begins to produce certain antibodies that attack the thyroid, causing hyperthyroidism. The antibodies can also attack the eyes (causing Thyroid Eye Disease which runs its own separate course) and also the skin on the front of the shins. TSI (thyroid stimulating immunoglobulin) is the Graves' antibody that acts in lieu of TSH (thyroid stimulating hormone) and stimulates the thyroid to produce thyroid hormone. The pituitary gland recognizes this stimulation and thus produces less TSH. Therefore, whenever Graves' antibodies are present, TSH will (and should) remain suppressed.....this continues for months, even years. Most of us have had doctors that got nuts about the TSH issue. Many of us have been overmedicated on anti-thyroid drugs (Tapazole/Methimazole, PTU) and have suffered with significant hyPO symptoms as a result. Those of us who have had RAI or surgery often suffer a similar fate....when a patient chooses RAI or surgery, the thyroid is no longer there to produce thyroid hormone....patients often suffer with hyPO symptoms because the doctors do not prescribe enough replacement hormone. Here is a link to a site that provides links to medical journals that address the whole TSH issue.....why TSH is suppressed in the presence of Graves' antibodies.....how suppressed TSH does NOT cause bone loss.....how suppressed TSH does NOT cause cardiac issues. http://www.altsupportthyroid.org/t... Many doctors that treat Graves' do not provide enough information for the patient to make an adequate treatment decision. Those same doctors are often the ones that do not know how to medicate properly. So, IMHO, the very first thing anyone newly diagnosed needs to do is find a doctor that medicates properly. We've all been down this road and can help a new patient read lab reports and make dosing decisions while working with their doctor. The patient will then discover whether or not the doctor can be trusted to medicate properly no matter what your ultimate treatment choice may be. If you want to feel well while having Graves' disease, this is a MUST. I thought I would post this to help all the newcomers since this topic comes up very often. Please know that we are here to help you on your journey. All the best, Carol Posted on 10/31/09, 09:10 am |
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i agree, i was on meds at first and my endo told me they weren't working, he said i could either have RAI or surgery, he didn't push me in either direction thankfully, but after i had surgery, i asked my surgeon if i'd ever feel better and he said probably not. that hurt a lot...and for a while i believed him until i realized i had to play the most active part in my recovery. the road has been rough, but i've come a long way. 
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Hi Carol
Very well written and great link. I remember when I was first diagnosed with GD and TED, how scared I was, what was this disease that was making me feel so ill, causing my heart to beat-box..making me lose weight, making me sweat like I had just come out the shower, think the worse part for me was the eyes you can't really hide them, unless you walk around with dark shades. I was so pleased we had the net so i could find out what it was my treatment would be and what my prognosis would be once I had started treatment. I was lucky in I found a great support board to start with, without the help of others who had been there I would have been clueless about what my labs meant what the ranges indicated and most of all about getting hard copies of them. Thank you Carol this is a great post. Best wishes Lolly
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Thanks so much for your posts!
I think this is a very important message that new members need to read. It seems we've all had docs that did not medicate us properly. And, it seems that many of us, myself included, have had to "use" a succession of docs to get the labs we need and push our docs to dose us in the manner which we know is right. And, the only reason we know what dose is right for us is because we've learned what needs to be done through research and participation on thyroid forums. We often read that we need to be proactive in our health care decisions - this definitely seems to apply for Graves' disease.
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please forgive me for bumping up my own thread but.....
the more I read the posts on here, the more I realize that we need to get this message out. Feeling well and having Graves' disease is entirely possible.....it truly boils down to taking the right dose of medication. Endos might try to have you think otherwise but it is a time-proven fact.
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I agree too...! My Internet is not working too well, can't comment as often as i'd like...! :-(
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It's a shame that some of these threads can't be stickied so they stay at the top for any new members coming along.
Lolly
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bumped 'cuz it seems like a good idea.....
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I agree Carol!!
THis is a great thread!!! Angel
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Bump....this needs to stay on top. The only thing you can do is post in under groups...which in a way sucks because its not visible and you have to search for it. Big Hugs...Kahty
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Actually...Im going to copy this and post it there anyway. This is good info.
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