low tsh but normal scan

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I was recently told I have a low tsh but my scan came back "normal". I had grave's in 2008-2009 and then went into remission... Doctor says since scan is normal, she won't do anything. Any chance I can still have grave's with a normal scan. I have lots of symptoms! Thanks!

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  • Posted

    She needs to check for Graves antibodies.  With that low a TSH, I would think you would still have antibodies.  I had a scan done at initial diagnosis.  I do not know what the results were other than I do not think I had any nodules.  When I was diagnosed and treated, my levels of FT3 and FT4 were high but not excessively so and my TSH was 0.  After starting on 10 mg of methimazole, my FT3 and FT4 fell right into the middle to upper range of normal but not my TSH.  It stayed at 0 for 2 years until I came across a medical research paper that said that hyperthyroid patients benefit a lot from taking 3,000 to 4,000 mg of regular L-carnitine supplements because they lose carnitine from their muscles through urination.  I tried this and my TSH rose to 0.05 (not a lot but was in the right direction).  Then I experimented and tried Acetyl-L-Carnitine and my TSH shot right up to over 1.5.  My FT3 and FT4 did drop down to the bottom of the normal range so I stopped the Acetyl-L-Carnitine and my doc lowered my Methimazole to 2.5 mg once daily.  I think my results are just fine now.  I should be getting the latest ones tomorrow.  I think it also reduced my antibodies.
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    • Posted

      Linda187 - Thank you! This helps... I am going to look into the acetyl-L-Carnitine... I have never heard of that. I just feel so frustrated - I know something is wrong with me, but it is like the numbers, most doctors say if they are normal (which mine aren't) even if they are close to the tipping points, they won't do anything. I swear, why aren't more doctors in tune with this little organ that controls SO much of our bodies. Hope your test results came back good today! Thanks again. 
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  • Posted

    The only thing with Acetyl-L-Carnitine is that it works very fast and very well and requires constant monitoring of symptoms and lab values and adjusting of dosages of both it and the methimazole if you are on that.  Some patients have started it and did not adjust it and of course it will be the same as if you start on a high dose of methimazole and do not lower it as your values drop.  So it is a fine line to walk.  Also with our disease it is not one size fits all.  We are each individuals with in addition to thyroid issues perhaps other health issues as well.  For me, my meds brought my FT3 and FT4 right into the middle to upper range where I wanted them but I was really not happy with the fact my TSH was not rising as it meant that I still had antibodies.  So I am very happy with what it did for me as it lowered my antibodies to the normal range.  Another poster on the Board said it lowered her antibodies by half.  Any improvement is great as far as I am concerned.
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  • Posted

    PS Julie, I think Graves patients lose a lot of vitamins, minerals and amino acids from their bodies as a result of being hyperactive.  I think it is a good idea to have these checked to find out what you are deficient in and add it back in by way of supplements.  I was deficient in Vitamin D and carnitine and I think magnesium.
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    • Posted

      Linda - thank you! This actually all started when they found out my vit. D was at 19 (should be at least at 30)... so I am on prescription strength vit. D. I felt better for a little while, but then it leveled off and then I felt like crap again... more blood tests showed my thyroid then. They didn't check magnesium, but it probably wouldn't hurt to take it... thank you!
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  • Posted

    It was through Linda's posts that I learned about Carnitine.  I never took the regular L-Carnitine but took the Acetyl-L-Carnitine after my endocrinologist, though skeptical, said it wouldn't hurt the thyroid, etc.  And he had said I had to clear all drugs, herbs, and otc preparations with him before taking anything.

    My TSH has been in the normal range since taking it and my Free T4 has remained high in the normal range.  Areas where my fine-control muscles have been weak are a little stronger when I am taking the Carnitine -- specifically, eye muscles and bladder control muscles.  My symptoms also improved, but they seemed to be more the symptoms of hypothyroidism rather than hyperthyroidism, and they improved much more when my doctor put me on Wellbutrin.

    Like Linda says, we are each individuals and can't say one-size-fits-all.  I am one who has, or has had, both types of antibodies--some for Hashimoto's Thyroiditis and some for Graves' Disease, but the doctors were always more worried about the GD than the HT, while I have felt best when my thyroid hormones were high in the range.

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    • Posted

      Thanks for the update Fern.  You seemed to have improved on the Carnitine and other meds.  I think having both antibodies is a real balancing act.  I also think the Acetyl-L-Carnitine helps to lower antibodies but am not 100% certain of that.  I am awaiting my antibody results as we speak.
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    • Posted

      Thank you Linda for your response.  Even my endocrinologist agrees that having both antibodies is a balancing act, but he says that as long as they are balanced it is good.

      I think feeling well is what helps relax the antibodies the most.  As long as my TSH stays normal the Endo is not interested in checking the antibodies, though.

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    • Posted

      I just asked my GP to check myTSI and TRAb antibodies and he did not know what they were.  The TRAb is really an important measurement to track recovery in Graves.  It turns out they are not covered by our Health Insurance and they have to be sent as frozen samples.  He did manage to slip one or two of them through though.  He said in future I would have to ask my Endo for those.
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  • Posted

    Just an update... to prove that with the thyroid we SO have to be our own advocates. I swear, in another life I am coming back as a medical professional who keeps up on these things. So the nurse who told me my scan was normal put it like this, "I will have the doctor call you, but it came back normal so everything is fine. She may take blood again in a few months, but you are fine." That is what sent me into a tailspin - which brought me here (thank goodness - I have already learned so much). Upon FINALLY speaking with doctor yesterday - I had left a few messages to ask some questions, found out that even a normal scan doesn't mean I can't have Grave's. Not that I want it (but I do want something to explain my issues). So... took more blood today and will see what happens. I am tired of always having to be the one to follow up and ask questions and "tell" them what I think should happen... but anymore now, it is necessary. 

    I am so glad I came to this site though... because if I don't have Grave's then at least I have some options to maybe help with my symptoms. I am going to look into the l-carnitine... didn't want to start it until after I hear what they have to say. 

    Thank you again and I enjoy reading all the posts! I know I will be checking other discussions often. 

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