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All right I went in for a check up at the Gyno doctor and they sent me to the lab and did a batter of blood work. Well my test came back and thyroid test came back as low (I think) and Dr. started asking me if a ton of questions like, do I have heart palpitations? If I suffer from fatigue and tiredness? That it could also explain why I am so skinny and can't gain wait or maintain weight when I do gain it. She asked several other questions about symptoms. She said that she noticed that my heart rate at the last visit and this visit was high, She asked me if Graves disease ran in my family. I said yes that both my grandmothers on both my moms and dads side had it, as well as my mother. So she started me on heart medication Atenolol and sent me for more blood work and ordered a full thyroid blood panel and ordered a thyroid scan (ultrasound). My blood work come back and they called for me to come in to discuss them. She said something about Hyperthyroidism and the way she described it to me was my thyroid is working to well. That it is making to much of the Thyroid hormone and that my brain is then telling it to stop making it. So if anyone can explain this to me where maybe I can understand it better I would appreciate it. Also when I do start taking the Thyroid medication will I gain weight? What are the side effects both negative and positive. One of the things that I was told is that my energy level will increase. Is this true? if so can you describe where you were at before starting treatment and how much better it has gotten. If you can think of anything that I may have forgotten or didn't think to ask please go ahead and post that information. Thank you very much in a advance.

Stephanie

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    Graves disease is an autoimmune disease where the immune system produces antibodies that causes the body to overproduce thyroid-stimulating immunoglobulin (TSI), an antibody that targets the thyroid-stimulating hormone (TSH) from the pituitary and thereby causes the body to produce excessive thyroid hormone.  The TSH is a hormone from the pituitary gland that tells the body when to produce more or less thyroid hormone.  With the antibody attacking it, the pituitary gland is getting an incorrect message and therefore overproduces thyroid hormone.  There is another autoimmune disease called Hashimoto's which attackes the thryoid gland itself and often presents with hyperthyroidism and after burning itself out renders the patient hypothyroid.  Some people have both Graves and Hashimoto's together.  The tests that are used to diagnose thyroid disorders are the TSH (thryoid stimulating Hormone), Free T3 and Free T4.  After being put on treatment with thyroid hormone blocking drugs, your doctor will follow you (in my case quarterly and then when my levels improved substantially twice yearly) with these tests.  In addition, to diagnose Graves, doctors do blood tests to find the levels of TSI and TRab antibodies to confirm diagnosis.  TPO is another antibody blood test that indicates inflammation in the thyroid gland.  Both Graves and Hashimoto patients can have elevated TPO antibodies.  The hyperthryoidism is treated with a drug that blocks the excess thyroid production and therefore normalizes the level of thyroid hormone in the body.  In my case, at diagnosis I had an elevated Free T3, elevated free T4 and a TSH that was less than 0.001 which indicates hyperthyroidism.  When I was placed on Methimazole, 10 mg, a thryoid blocking drug, my Free T3 and Free T4 normalized immediately and stayed normal as long as I regularly took the drug.  However, my TSH level which stimulates the pituitary to produce these hormones was not working at all until I added regular L-carnitine and then Acetyl-L-Carntine to my treatment medications.  After that, my TSH rose dramatically.  Most endocrinologists do not know much about the Carnitines, supplements that can be purchased in health food stores.  However, with the use of Acetyl-L-carnitine especially, blood thyroid levels have to be checked very often and dosages of both the carnitines and anti-thyroid meds have to be altered as your lab results improve or you will rapidly become hypothyroid.  Graves disease patients can also develop a disease called Thyroid Eye Disease or TED for short.  TED develops in at least 50% of Graves patients and the symptoms range all the way from slight eye irritation, dryness and redness all the way to bulging eyeballs and lid retraction.  There are Opthalmological specialists who can treat the eye disease component of Graves.  In my case, it was mild with irritation, dryness and redness.  It improved when my Eye doctor placed collagen plugs over my tear ducts and when my thyroid levels normalized on my treatment.  Hope this helps answer your questions.
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    Thank you now can you tell me how does treatment work how long until you see improvement for your symptoms such as energy levels, things like that. Also what are the side effects of the treatment both positive and negative. Such as will I gain weight I am 114 lbs and can't gain weight to save my life, but I don't want to gain weight just around the middle either if you know what I mean. So if you can give me any info regarding that I would appreciate it. Also is it possible to have symptoms from both hyper and hypo?
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      Well each individual is different.  I was menopausal at time of diagnosis of Graves and also had metabolic syndrome which had hypertension and pre-diabetes as part of that syndrome.  Others are younger.  I always had a weight problem due to the other conditions.  However, that said, 10 mg of methimazole is a fairly low dose compared to others I have seen posted.  I did okay on that dose with no really untoward side effects.  As soon as I started it, I did not need the beta blocker for the heart (Propranolol) and so the symptoms of excessive thyroid disappeared for me.  The eye irritation however, lasted a long time for me.  For 2 years I had a TSH of 0 and normal FT3 and FT4 and then I read an article about the benefits of hyper patients using L-carnitine.  When I tried this, I did feel the improvement and my TSH rose slightly.  Because of the improvement, I was able to lower my dose to 7.5 mg.  Then I experimented with different carnitines and used Acetyl-L-carnitine and my results really improved tremendously such that last summer I could lower my dose from 5 mg to 2.5 mg and my antibodies are now gone.  My Endo has given me the choice to continue on it or stop it.  I will stay on it to make sure my TSH value remains steady.  So with just the medical treatment the first two years, nothing changed but I was regulated.  After that by using diet and supplements I really improved during the next six years to the point where I am at now.  There are people on another Thyroid board using a Block and Replace regimen with low dose antithyroid med and levothyroxine who have gone into remission for long periods of time and not had any rebounds.  The low dose method is relatively a new treatment developed at a Centre in the United States.
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    Go for my doctor appointment today and I am a mix of emotions. Nerves are standing on end. Go back and forth between being scared to death at the diagnosis and what it all means to excitement at the idea of there being light at the end of the tunnel. At finally knowing what is wrong with me. For years I have been told oh its nothing to worry about it is just depression and thrown on antidepressants for the symptoms only to get worse. Them never doing any blood work to actually diagnosed
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    Diagnose anything. I have even had a Dr. To hospitalize me to try to get my depression under control. Only to be told that depression was not my problem and told that the symptoms would go away on there own. To finally giving up and saying this is the way life is going to be for me. To now where there might be a diagnosis for me. I will be posting my lab results as soon as I get back from the doctors.
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    Well I went to the dr and got my bloodwork back. All of my thyroid blood test came back within normal range except for my TSH it was .003. So we decided to treat with Methimazole 5mg and Atenolol 25mg. I go back in 4 weeks to have my blood work done again. How is it possible for all of my other thyroid hormones are normal, but my TSH is so low? she said it was almost 0 and that we could either watch it or treat it, but since I was experiencing symptoms and graves disease runs in my family then we are going to go ahead and treat it. What should I expect. will te medicine I am taking get it up? she didn't give me any refills so I am thinking she is thinking one month of the thyroid medicine is going to work on fixing it.
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    • Posted

      That is common in Graves patients. The methimazole will normalize the FT3 and FT4 because it is blocking the excess thyroid hormones produced in hyyperthyroidism.  However, the TSH is not working properly because your immune cells make antibodies against the thyroid stimulating hormone (TSH) receptor on the thyroid gland cells. While my FT3 and FT4 normalized right away on a dose of 10 mg of Methimazole, my TSH remained at essentially 0 for two years until I took further measures.  I believe had I not taken these measures, my TSH would still be sitting at 0.  I added vitamin D 1,000 to 5,000 units a day.  I added first L-Carnitine 3,000 mg a day which then helped my TSH rise from less than 0.001 to 0.05.  I also took CoQ10.  Then I experimented and added Acetyl-L-Carnitine and my TSH rose to 0.78.  Then I could not get the Acetyl for over a year and my TSH fell again.  Then I got it and had to work very diligently to keep my labs balanced because the Acetyl is so powerful it can send you hypo in a matter of 4 weeks or less even on a dose of 500 mg daily.  So I would get frequent blood draws, my doc would lower my methmazole dose and I would either take the Acety every other day or do something to balance my results.  Last summer my TSH was 2.7 and my Frees were right at the bottom of the range and I was getting palpitations so I stopped the Carnitines altogether and my TSH gradually fell to last measurement was 0.78 and my Frees moved up to mid range right where I want everything.  I think all this was necessary because we lose so many vitamins, minerals and amino acids when our thyroid was running hyperactive that we need to replace them as well as take the antithyroid meds.  I have hears of some people having their TSH rise with just Methimazole (although usually not a low dose like 5 mg) but I wasn't one of them.  My antibodies reduced also when I took the Acetyl.  I think it affects the TSH so dramatically because it crosses the blood-brain barrier.  However, others on Boards who have tried this went severely hypo because they did not know how to monitor and adjust their acetyl and methimazole dosages.
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    Oh and she has scheduled me for a thyroid ultrasound and after that is done she wants to schedule me for a thyroid uptake.

     

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