Should I have thyroid removed or look for alternatives?

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I was treated with carbimazole for a year which stabilised my thyroid, I was then taken off it. My thyroid remained normal for about 7 months. However my latest blood test shows an increase in thyroid activity and is too high again. Options presented by my specialist are radio active iodine (don't want this) or removal of thyroid (not really keen on this either!)

Are there any reliable and safe alternative solutions to controlling thyroid function that people are using? Also, is there anyone out there that has had the radio active iodine or thyroid removed? Comments please as I'm not sure which way to go.

Many thanks!

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  • Posted

    You will have to go back on carbimazole till you decide. There is no other real treatments except rai and surgery. You could stay on medication but long term it may start to affect organs and bones etc. Resulting in osteoporosis or heart problems. Rai or surgery is a cure. Once done you'll be on thyroxine and won't have a thyroid so ull have no problems with it. I'm still unstable after 2 yrs they won't let me come off med. I'm being referred to hospital which does rain, just so I'm more informed of procedure and side effects etc. Maybe u should ask to be referred so you get a better understanding of your options :-)
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  • Posted

    I agree with Screwball21. Why can't you just go back on meds? I would also look at your lifestyle, sources of stress, diet etc. I know stress triggered my disease. Also, I found my disease responded to the addition of Acetyl-L-carnitine to my treatment regimen. There is a medical article on this which states that there are fewer thyroid storms and those that do occur are less severe when Graves patients add L-carnitine to their treatment regimen.

    If it were me, I would definitely avoid either surgery or Radioactive iodine at all costs. Doctors are prejudiced in using these methods but I have heard of no one who had this done that is happy with the results. It just swaps one problem for another.

    Linda

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  • Posted

    Linda how long have u been suffering are you hyper or hypo? And how long on mess and what if u dint mind me asking
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  • Posted

    I was diagnosed in 2007. I was put on 10 mg of Methimazole which I think is the same as Carbamizole in your country. My TSH remained at 0 until I added L-carnitine to my treatment. Then it came up and soon I no longer had antibodies so I was told to decrease my medication to 5 mg a day. I have not had problems being on this dose and symptoms are well controlled. If it means I am on it for the rest of my life, that is okay. To me that is preferable to surgery or RAI.

    Linda

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  • Posted

    Don't u worry about osteoporosis or heart problems. What is L-carnitine. My tsh has been on 0.02 < for a year now won't change. This is one there concerned about
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  • Posted

    My doc told me that it was once believed that carbimazole was quite dangerous, but they now realise that that is not the case so although I was offered RAI, which I refused, he is more than happy for me to stay on the drug. As far as I am aware, it would be your thyroid that would cause you other health issues, not the drug itself, if you cannot get your levels on an even keel.
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  • Posted

    Yes screw ball that's what I meant. Linda did that L-carnitine raise tsh and where do u get it.
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  • Posted

    L-carnitine is an amino acid that is found naturally in the body but it gets depleted when a person becomes hyperthyroid. I have Graves disease and am hyperthyroid. For the first two years, I had a less than 0.01 TSH until I added L-carnitine. You get L-carnitine in Health Food stores here in Canada or you can find it on Ebay and other Internet sites.

    What I found though was that though regular L-Carnitine raised my TSH slightly, the Acetyl-L-carnitine is better absorbed by the body and it raised my TSH right into the normal range. I think it also got rid of my antibodies.

    I am on only 5 mg of methimazole which is the same as the carbimazole you have in England. My symptoms are well controlled and all my thyroid blood tests are normal.

    I have no fear of osteoporosis because my blood results are normal, I have no symptoms on this regimen and I take a small amount of bioidentical hormone replacement therapy which keeps my bones healthy. I also take Vitamin D3. I am 66 years old, have had testing of my bones and they are fine.

    You can also get your L-carnitine value measured by blood tests. Mine showed a deficiency and I bet if all Graves patients were tested, they would show a deficiency in L-carnitine. My specialist was shocked at how well it worked for me.

    Linda

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  • Posted

    You can google L-Carnitine and Graves disease to get more information on this.

    Linda

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  • Posted

    I'm going to look it up now as my tsh is 0.02 and needs a boost :-) thanks
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  • Posted

    If you are in the UK you can get Acetyl-L-carnitine capsules from Holland & Barratt :-)
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  • Posted

    Hi AM22,

    I am almost in the same situation. Unfortunately, I also have atrial fibrillation as a side effect of hyperthyroidism.  Carbimazole was my saviour and put me back in rhythm and stabilized my thyroid.  They took me off it to prepare me for rai and I went right back into atrial fibrillation.   So I told them I wanted to go back onto carb and leave it at that.   I feel great on this medication but they want to take me off it saying it can just turn for no reason and mess with the blood cells.   My only option they say is removal.  Like you, I am not happy with this alternative as many say they never feel quite well and it just doesn't sit right with me.  I personally want to stay on carb.  My GP says he has had patients on it for years with no bad side effects.  Why are the consultants so keen to give me surgery.  I am confused ?

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    • Posted

      I do not know what dose you are on but Carbimazole can cause liver problems and problems with blood count.  My Endo monitors those values with tests every time I see him.  I have never had a problem so far and I have been on it since 2007.  It is more likely to happen on higher doses.  Other than that, as long as your blood tests show no involvement, there is no reason why you can't stay on it.  Endos are trained to do RAI and/or surgery even though that may not be best for the patient.  My GP said it is because it is "accepted standard of care" and docs will "follow the herd" rather than be different.  Sad but true.  That is why patients must become their own best advocate.  If you don't want to have RAI, you have a right to refuse. 
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    • Posted

      Hello linda 187

      Thank you so very much for your prompt reply.  I cannot tell you how good it is to discuss this with someone who knows about it.  Your doctors "follow the herd" theory is exactly what I think about it all.  I know I have the right to refuse RAI or surgery but I am hoping when I see the consultants next week they allow me to stay on carbimazole.  I have decided it's what I want to do.  Although I will always be a little worried about carb suddenly "turning" as they put it.  I am on a low dosage 10 mgs daily and my readings are dead centre normal.  Maybe I'll ask to trial going down to 5mgs and taking L-carnitine. 

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    • Posted

      Right.  So I'll ask about going down to 5mgs if it placates them and look into L-carnitine for myself.

      Has anyone heard about low dosage naltrexone? 

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    • Posted

      I tried low dose Naltrexone and it was a disaster for me.  It made me seriously depressed.  Other people have found it helpful, although I don't know if they were Graves patients.  If you are going to try things, try them one at a time so if they have an effect like LDN had on me, you will know which supplement or drug is doing what to you.

       

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    • Posted

      Thanks once again linda187 - you are the only person I know who has heard of it - even my consultant in England didn't know about it and asked for the information on it - which I gave her.  She hasn't commented I doubt if she even remembers about it.  Anyway, I think I will stick with the carb and try to get on as low a dose as I can deal with plus look into the carnitine.  Only problem is how do I get blood tested for carnitine if the endo doesn't have it in the treatment.  Guess a private blood test.  Things are different with the nhs over here.
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    • Posted

      If you try the Carnitine and you have a heart defect, monitor for palpitations and if uncomfortable, you can stop it immediately.  I had no problems with it the first time I took it but did have palpitations the second time because I have hypertension.
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    • Posted

      Also, you can start on 1,000 mg of vitamin D.  One gentleman posted here on this Board that he thought that caused a remission in his Graves for him.
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