Hyperthyroidism for 6 years. Need help.

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Hi everyone. I was diagnosed with graves disease about 6 years ago and have been on 10mg to 25mg carbimazole ever since then. It's getting frustrating that my condition has not been improving. My doctor has been recommeding RAI many times but I have rejected her as I was worried about the potential repercussions (eye problems, lifelong medications etc). I really hope that I am able to seek some assistance through this forum.

Here are some my queries:-

1) I have high TSH receptor antibodies (>40). Are there any ways to reduce this? Does high TSH receptor antibodies means that is harder to normalize my T3/T4 level?

2) Are there supplements that can help to normalize my T3/T4 level?

3) Which is safer? Continue with carbimazole or go for RAI?

Is it safe to live with graves disease?

I am confused and may have more questions along the way. Hope to have some advice from you guys. Thank you.

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  • Posted

    Hi M185.

    Can you post your latest levels for TSH, Free T3 and Free T4?  I was diagnosed with Graves in 2007 and my Free T3 and T4 immediately normalized in the upper normal range but my TSH would just not budge from less than 0.001 until I took supplements.  I read a research paper by Dr. Salvatore Benvenga of Italy on the benefits of hyperthyroid patients taking Regular L-Carnitine at a dose of 3,000 to 4,500 mg per day and started by taking 1,000 mg a day.  My TSH rose a little.  I also found out I was deficient in Vitamin D (Vitamin D is extremely important for thyroid patients) and I was low in Magnesium and take 200 mg of that as well.  I then experimented with different types of Carnitines and took Acetyl-L-Carnitine, 500 mg and my TSH just shot right up and my Frees lowered to the bottom of the normal range.  I would caution anybody taking Acetyl though to be very careful with it because many people have tried it after reading on Boards like this about it and did not know how to monitor and adjust for the quick lowering of labs that Acetyl brings when you are also on Methimazole or Carbimazole.  They went exttremely hypo very quickly.  You will need blood testing more often and need to know to decrease not only the Acetyl but your meds dose.  My doc adjusted my meds dose and I lowered the Carnitine.  The other supplements I kept at a steady dosage.  My antibodies have normalized now, my labs are all normal in mid range and I am on 2.5 mg of Methimazole every other day and only take 500 mg of Regular L-Carnitine on the off days I am not taking the Methimazole.  I also continue with Vit D, Magnesium, Omega 3 and Curcumin.  I am so glad I found that article because I know my labs would not have normalized on only the medical treatment.

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    • Posted

      Dear Linda

      Appreciate your reply to post.

      My T4 and TSH are 26 and 0.02 respectively. My blood test did not test for my T3 levels. I read your post previously and I have tried taking Acetyl-l-Carnitine. However, the pills started to have a very strong vinegar smell and so I stopped taking them. Not sure whats wrong. I may try to order another bottle to try again. Is it important to take the other supllements that you have recommended (Vit D, Magnesium, Omega 3 and Curcumin)?

      Does my high TSH receptor antibodies affect my chance of recovery? Are there any ways to lower the level?

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    • Posted

      The only thing that raised my TSH was the Acetyl combined with a low dose of Methimazole.  Other people have gone into remission using natural supplements like Bugleweed, Melissa and Motherwort (sometimes they are sold mixed altogether).  Vitamin D is VERY important for thyroid patients.  Here in Canada most of us don't get enough sunshine and are low.  The Omega 3 and Curcumin lower inflammation and you can ask your doc to test for your Magnesium level because if it is low, you will not get optimal results.  The brand of Acetyl I took was by Genestra but I have taken other brands as well.  

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    • Posted

      Hi MI85, after reading about Acetyl-Carnitine on this forum I started taking 500mg per day. I have been taking it for about 18 months.  My Carbimazole was dropped from 30 mg all the way to 2.5 mg. At the moment I do not take thyroid lowering medication and my next blood test will show if I am in remission. 

      Regarding the vinegar smell of Carnitine: I was tired of swallowing those large capsules every day, so I got Acetyl-Carnitine powder instead. It is an amino-acid and as such has a sour, acidic smell and it tastes sour and faintly salty. It dissolves very well in water. I got used to take the 500mg (the powder came with a really tiny measuring spoon) in a large glass of water. To me the drink tastes a bit similar to lemon water. Rather refreshing.

      I am assuming that one of your Carnitine caplets spilled some powder, hence the vinegar smell. Don't worry, it is the normal smell of the substance. I found the powder to be a lot more cost effectiv as well.

      Regarding the TSH receptor antibodies: There are different kinds of antibodies. Some simply block the TSH receptors while others stimulate them to increase the production of thyroid hormones. In Graves' disease the stimulating kind is normally predominant. These antibodies mimic TSH and 'trick' the thyroid into hormone overproduction. As long as your TSH antibodies are not within normal range it is unlikely that  you will stay euthyroid (normal values of T3/T4) without taking thyroid lowering medication. 

       

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    • Posted

      Hi danR, thank you for your response. So does that mean that there's no way to get my TSH antibodies into normal range other than taking thyroid lowering medication? My doc told me that if my TSH antibodies are high, my chances of relapse is high and therefore she recomment RAI treatment for me. Any opinion on that?

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    • Posted

      Thanks Linda. Will try to get the supplements online. Hopefully it works.
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    • Posted

      My antibodies decreased when I added the supplements, especially Acetyl-L-Carnitine, to the low dose of Methimazole I was on along with the other supplements.  That was the only thing that worked for me because 2 years on meds alone did not do it.
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    • Posted

      Are there any multi-vitamins which contain essential minerials for graves disease patients and are without iodine? I am struggling to find one.
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    • Posted

      After more than a year on Carbimazole my TSH receptor Abs came down to negligible levels. When my endocrinologist recommended stopping the Carbimazole he told me that only about 30% of patients stay in remission. He actually said something like: Let's see if  you are one of the lucky ones.

      I am not a professional and can only talk about my own experience. I have been taking Acetyl-Carnitine daily and I am assuming that it helped me. But then I also responded well to Carbimazole and my dose was dropped accordingly. You have been on the drug for a very long time and at rather high doses. 

      Your could search the internet for scholarly articles related to 'Thyrotropin Receptor Autoantibodies'. 

      For example have a look at the article with this title: 

      'Graves' disease: changes in TSH receptor and anti-microsomal antibodies after thyroidectomy'. 

      It shows that antibodies were detected at similar levels even after surgical removal of the thyroid. And the antibodies can cause other problems like thyroid eye disease. The only advantage of RAI or thyroidectomy is that you will not become hyperthyroid again. But you will have to take thyroxine for the rest of your life.  

      Btw, try to avoid smoking at all cost. Smokers have a much higher relapse rate of Graves' disease compared to non-smokers. 

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