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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Kathy
Thank you. Ya know, I must admit that, when I first came here, I never thought to look at "Groups" for info.....I thought "Groups" represented "sub-groups" of people with more specific interests. I SO wish this site had a "click-on" section called "important information" or "things every Graves' patient needs to know". I've seen some forums that keep certain things pinned to the top. Honestly, I have SO much information to share that I think is useful for every Graves' patient. Stuff like explanations for the reasons we want Free levels tested....how to read labs....summary of treatment choices. I also have tons of research links. I find myself repeating myself often and don't mind so much 'cuz I really think the message needs to get out there. After dealing with endo #2's nonsense, I became really motivated to do this....and, after meeting with endo #3 I was horrified to think how a first-ever patient would fare under her care. If I followed her dosing recommendations, I just might not be here right now to tell my story - it's scary!!! I'm just happy to be here and if my input helps someone, I feel I will have accomplished something. All the best, Carol 
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Carol...please feel free to post what you want on Graves Disease General info...just click on groups at the top of your screen...It would be awesome it you did. That way if we need something we can access it there and post it here or just direct new comers to that site. Big Hugs and thanks for all your hard work...Kathy
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Kathy
Thank you for that offer - I am very flattered. I think my passion about Graves' is blatently obvious. Gotta tell you, I've never done the amount of work researching a disease as I have with Graves'.....I was very fortunate in having excellent care along my "medical way" before my Graves' Dx/ I soon found out how poorly most docs, especially endos, manage Graves' disease and thus the place where I am today. I've spent countless hours participating on forums and accumulating research information. But, the more I learned, I realized that treating Graves' is not rocket science. IMHO, it all boils down to finding the right FT4 level for each individual and partnering with a doctor that can medicate properly. Finding the right doctor can be elusive but they are out there....I know because I found one. It is possible to feel well and have Graves' disease but it is truly up to the patient to make it happen. I'll get to work and start getting some threads up there. Thank you for having faith in me. (((hugs))) Carol
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bumped per request of new forum member - welcome Nancy - we're here for ya!
:)))) Carol
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