overactive thyroid for 12 mnths & just been told i have had graves Disease

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Hi im new to this so plz bear with me , im 37 yr old female and a cronic asthmatic for my whole life and today I was told that i have had graves disease for nearly 12 months, Iv been seeing a endro specialist since begining of july 2014, im on 100mg of PTU aday and also i have to take vitamin D tabs, she told me i hada week to make up my mind to have radio iodine bt i have said no as i have teenage kids and got my first grandchild on the way. i also have very high calcium in my blod and my PTH is very high, what does this all mean and where do i go from here do i go for the iodine or surgary, sorry if this sounds silly  

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  • Posted

    I don't know about the high calcium, but 12 months is not a long time to be on an anti thyroid drug.  I don't know anything about the typical dosages of PTU either though.

    You don't really have to decide between RAI or surgery.  Yes, they would rather treat you for the resulting Hypothyroidism if you let your thyroid be destroyed, but they can't make you do it.

    I flatly refused to have my thyroid destroyed.  At first they wanted me to do RAI, but treated me with Methimazole [MMI], which is used in the US and Canada, and is much like Carbimazole [CBZ] which is usually used in the UK.

    I'm not saying I did very well on the MMI, but I believe it was because I was over-treated with it.  After a year I refused all treatment, and had a pleasant summer before doctors and others pressured me to see another Endocrinologist.  The second one had a better approach but again it seemed he was over-treating me.  Then a situation arose where he decided to lower my dose of MMI by a small amount per week, but was very worried I would "go hyper" again.  Actually, at the time, I was in the normal range for the free T4 and free T3 levels, but still very much near zero with TSH.  

    After the reduction of medication my TSH rose dramatically into the middle of the normal range.  He had said when he first began treating me that he would allow me to be in the upper end of the normal range, but when I asked him to lower my dose some more, he did so reluctantly.  2 months later my blood test showed my TSH was above the normal range [Hypothyroid], so he lowered my medication yet again.  It stayed in the normal range, while I repeatedly lowered my dose, remaining at a constant level for the last 4 weeks of each testing cycle.  I always informed the doctor what doseage I had been taking, and he never complained because I was in the normal range which continued about a year after I was off the MMI altogether.

    During that year, I had hypothyroid symptoms but the endos would not treat me for that because they were afraid I would go hyper again.  

    I finally had an integrative physician treat me with Cytomel which is a T3 supplement, although I also had to split the pill into 8ths to have it not be too much, yet enough for me to feel normal.  After 2 cycles of labs with that, and after increasing my dose to 1/2 pill, I was allowed to go to a whole pill and take a small dose of Levothyroxine, the T4 supplement.  Then I had my TSH fall to zero again, and had to find a new Endo.

    I had a rough time when he made me stop both supplements, but my PCP gave me Wellbutrin which helped me get back to normal, and I took Acetyl-L-Carnitine which may have helped also.  

    In all of that, and it has been another year since going on the Wellbutrin, I have never yet had to take the anti thyroid drugs again.

     

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    • Posted

      Hi I was on carbimzol for 2 months and it did not agree with me one little bit as I was constantly sick after taking it but the PTU is not as bad, some times I get a reflux of acid, I have to be careful as I'm asthmatic so some drugs I can not take. My hyperthyroidism has not dropped at all in the last 12 mnths and she is concerned about that. Then I am only told today that it's graves disease, I also found out that my thyroid has been high for over 7 yrs and no one told me about it till I refused to leave my gps surgery as I felt like I was going mad with the pulpertations and the sweats (I even thought I was going through the change lol 🙈) just getting fed up as now they want me to choose and I don't want to make a bad decision.
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    • Posted

      Take more time to make the decision.  They cannot make you decide on their deadline.

      Be sure to get copies of all blood tests you are given.  It helps to have the actual numbers and the normal range figures to look at.

      I took the Carnitine after reading about it on this forum.  Linda said she did not overcome the Graves' Disease until she started taking it.

      Also, were you ever given beta blockers for your heart?  Or are they bad to take when you are asthmatic?

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  • Posted

    I've had Graves come back twice after initial diagnosis and treatment. Each time it's felt worse than before. I personally don't want to spend the rest of my life wondering when it will return and adjusting medication. So I'm going to have RAI as soon as I can get it. The thyroid will then go under active and can be treated with thyroxine which is a much safer drug than carbimazole. As soon as things stabilise you can forget it and not worry about it coming back. If a part of your body isn't working properly and you can live successfully without it why keep it? I've had various buts removed and all the better for it. Life is really too short.
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    • Posted

      Hi I was thinking about staying on meds for longer but my endocrinologist said I would not benifit from that iv been looking at the surgery as I work nights and I'm always feeling run down and iv had enough I'm 37 and feel like I'm in my 90s lol, and having a young family and grandkids I need to sort something, my other half works away so I'm the sole care giver for them and I just need some think done now . Thanks for all info give to me x
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    • Posted

      Hi Kelly. Working nights wont have helped at all as the body goes out of synch. My understanding is that the surgery is prob by far better than the RAI I've heard it can cause a lot of other problems. Plus u can't go near children for weeks. Sincerely suggest u look into supplements like magnesium to support your heart and counter the calcium level. Selenium for your eyes and vitamin d and also b complex for your entire immune system. Magnesium will also help your asthma and palpitations. There are several forms of magnesium - glycinate is a great one for long term mag deficiency. Pls google symptoms of deficiency. I thunk you'll be surprised. Best wishes x
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    • Posted

      Hi Leigh I was told by docs that if I had RAI I would have to stay away from kids but I said it would not be possible and all she kept say was send them to family😠, I have to take vitamin d and my calcium is very high as well (well hoped up ay I )lol. So think I'm going to make sure I get put for op. Thanks for the info and I know nights am not good as don't sleep that much as it is x
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