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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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fern12 kelly81213
Posted
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.
kelly81213 fern12
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fern12 kelly81213
Posted
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?
Sue1247 kelly81213
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kelly81213 Sue1247
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leigh25499 kelly81213
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kelly81213 leigh25499
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