Graves disease

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Hi, I've been diagnosed with Graves' disease in April and finally just saw my endocrinologist and gave me my 3 options.  I was hoping for opinions from people who have gone through this.

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  • Posted

    Hi Patricia

    what were your 3 options ?  

    Carbimazole

    RAI

    Surgery  ?

    I was diagnosed with Graves Disease one year ago ..  and chose Carbimazole... an anti thyroid drug ... which, if you can tolerate it 

    works very well in helping your thyroid from being attacked by your immune 

    system . 

    I was told that if I chose RAI  that everying would be easy peasy ...

    just stops your thyroid working  you become hypothyroid  and you take thyroxine for the rest of your life !!🙀

    No chance !

    My Thyroid was doing great thank you ... it was my immune system that was out of kilter ..  ...

    So I'm now Euthroid ... thank God !    and hopefully you will be to if you choose the right treatment to make you well again. try not to be radical 

    in your choice .. as your thyroid can be healed and your immune system can be calmed down .   which will lead you to better health

    good luck Patricia

    mx🌹

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    • Posted

      I can't speak for Madge but for myself, my disease started to improve after I did some research and found an article on the benefit of hyperthyroid patients taking Regular L-Carnitine in addition to prescription meds.    I also learned how important vitamin D and Magnesium were for optimal thyroid functioning.  Also reduced the stress that triggered my illness.  With these things added and my lab tests improving, my doc adjusted my meds dose downward based on my lab test results, and I adjusted my supplements dose and it worked out very well for me.

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  • Posted

    Who diagnosed you, and what tests did you have? I ask because my GP told me I had Graves and treated me with carbimazole which got the worst of the hyperthyroidism under control. Then after 4 months I saw an endocrinologist who also said I had Graves. At this point I had had not antibody tests. I asked for them but endo said I didn't need them as was obviously Graves as I was so severely hyper to begin with. I insisted on tests and they came back negative! Now I have a much better prognosis. My hyperthyroidism is unexplained but is being controlled now with carbimazole.

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    • Posted

      Have you had any blood tests to test for Graves antibodies though? All the radiation test does is to show the uptake of iodine and shows the problem is in the thyroid. It does not determine the cause. You need a full diagnosis before you can decide on a treatment. Until you get Graves confirmed, you should not have radioactive iodine or a thyroid operation. Radioactive iodine can make eye symptoms worse (or more likely) if you have Graves. Prognosis for a positive outcome with drugs alone is better if you don't have Graves. So it is so important to have the full set of tests done before making a decision on treatment.

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  • Posted

    The three options you would have been given from most Endocrinologists:

    1)  Treatment with thyroid hormone blocking drugs such as Methimazole (called Carbimazole in UK) or propylthiouracil (known as PPU for short)

    2)  Radiation of your thyroid and then thyroid replacement with a synthetic T4 thyroid hormone medication, most likely Synthroid

    3)  Surgical removal of your thyroid and then thyroid hormone replacement with a synthetic thyroid hormone medication, most likely Synthroid.

    Most will start with Option #1 while they rapidly push option #2 especially.  What happened in my case was when given Methimazole at a dose of 10 mg, my thyroid hormones were normalized but my TSH was not, remaining at less than 0.001 for two years until I added supplements like regular L-Carnitine, vitamin D caps, Magnesium and especially when I added Acetyl-L-Carnitine to my prescribed meds, my TSH began to rise immediately very quickly and my thyroid hormone levels lowered.  I tried to get research done on this because what it says to me is that it was the only thing that helped me lower my thyroid antibodies.  The medication alone would not do it.  The fact that my TSH rose so much and so quickly was probably because Acetyl-L-Carnitine crosses the blood-brain barrier and therefore was able to turn off the antibodies targeting my TSH receptors.  No endocrinologist will tell you this, most don't know about it and my Endocrinologist was shocked when it happened.

    The second option favoured by most Endos in the West does not address the antibodies causing the autoimmune disease.  I recently read in a research paper that the 1st option and the last option do this but the radiation option does not.  In fact, people have posted to this Board about getting thyroid eye disease 7 years after they got radiation even though they did not have thyroid eye disease when it was done and this is because this treatment does nothing to address the antibodies.  Also not everyone does well on synthetic T4 alone and a great majority of people do not and opt to get treatment with a T3/T4 combination drug, though most docs will not prescribe this.  This fact is true also when thyroid is removed by surgery and synthetic T4 is given.  Lots of postings on this Board about it, although some people do okay on it.  You just do not know if you will be one of them and if you choose #2 or #3, it is not reversible whereas medication is.

    I definitely stated to all my docs no matter what they said, that I would not consider removing or destroying my thyroid and I sought out the literature and other options and that has worked for me but I am very proactive and I think anyone who succeeds needs to be.  I take 2.5 mg of methimazole every other day along with the supplements (although I do not need the Acetyl-L-Carnitine or regular L-Carnitine now that my levels have all normalized) and my thyroid levels, including my TSH have remained normal since I started doing this.  I was diagnosed in 2007 so it has been 9 years I have managed my disease this way and my antibodies are now normal as well as my thyroid tests.  

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    • Posted

      Thank you , it is all overwhelming right now. lol probably read this 3or more times.  They did suggest option 2 but I was leaning toward 3 just from the few minutes with the doc but I need to learn more. It 1.seemed to have so many bad side effects but I'm going to talk more with the docs too.

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    • Posted

      The docs do not know about supplements.  You will need a lower dose of meds if you take the correct supplements and the side effects of the meds are fewer at lower doses.
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    • Posted

      I'm always delighted when I read your postings Linda ...you've given me so much help ... You cannot know ...💖

      When I was struggling with what to do next .. You always seemed to come in .. And although replying to others .. You gave me the benefit of your knowledge .. And helped me keep and deal with my thyroid and my immune system ..thank you mx🌹

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    • Posted

      I feel like the doctor didn't address my graves and I just had the radioactive iodine and thought now I'll be fine I feel like this is all just begining again

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    • Posted

      thank you , thank you , thank you! I am so grateful that you have found an answer that doesn't involve taking the thyroid out of the body! I am worried about the side effects of 2# and 3# at the moment. I have been told that I cannot continue Carbimizole as it could lead to liver/other problems- have you got any solutions too this? cheesygrin

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    • Posted

      Yes.  When you add supplements to your prescribed meds, and your levels improve, they have to lower the dose of meds.  At lower doses, the Carbimazole is not a threat to the liver.  I have only been on a maximum dose of 10 mg but I was always routinely checked for liver tests any time my thyroid tests were done.  Email me privately if you want more information on this.
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  • Posted

    Hi patricia, 

                       I am in the same position as you. However, I feel like this is all my fault from having a poor diet and minimal/or no excerise. Therefore I am tore between RAI, Surgery and finding a way to get time on my side so I can fight for my health. 

    It may not change anything, but the thyroid is the victim and the graves disease is a bully, and they always have a weakness. 

    Thank you for posting this, it is exactly what I needed as I am scared, confused and angry. This post has calmed me and made me focus on finding a way to avoid surgery or RAI- there MUST be another way.

    I apologise if this post was too honest, but I needed to vent. 

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