OMG your story sounds a lot like mine. I've been on and off Methimazole for years and I can't take it anymore. I recently was told I have a 4.5 cm nodule which I need to remove and that he highly suggest I take my whole thyroid out as I have Grave's disease and have had it for over 20 years now. I've gone in remission 4 times and can't take it anymore. When I feel good, it's great, but when I don't it's just awful. I'm so scared to have a total thyroidectomy, but I don't think I really have much of a choice this point of my thyroid journey! Anyone have any positive stories of anyone who had a TT and doesn't regret it. I would love to hear from you!
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I was on 5 mg of methimazole since January. Well I felt fine the first 3 months and then it started, having heat intolerance, I mean dripping wet. Couldn't go outside all summer. Slept all day, terrible itching skin especially at night while trying to sleep. even my hair started falling out and to me to be a woman and have your hair fall out is the worst thing in the world. So I now went to Winthrop Hospital and am off 5 mg of methimazole since I'm taking the nuclear test this week. The doctor wants to see if my thyroid is Hoshimoto or Graves disease. I hope it Hosimoto which is easier to treat. I may have to go for the RAI treatment which is radioactive iodine intake to get rid of the thyroid. My nodules are large especially the one on the left side. When I saw the pictures of it I was shocked how large it is. I'm not saying my original Endo is not great but I don't think she heard me saying all the side effects I was having, especially my skin itching so severely felt like bugs crawling on my skin all day and night. Even my hair is still itchy. The hair loss is the worse. The doctor said if you have RAI is there no telling it my hyper goes to hypo. Great I can't afford to gain any more weight since I'm under 5 feet tall and gained about 8 lbs., which on another person could be about 15 lbs. I will find out when I go back to the Endo at Winthrop. Even with methmizole your thyroid can turn from hyper to hypo, but I'd rather and hoping that being on Synthroid is a better choice, since I know people that have taken this medication for years. So I pray that this will work. I'm a very active person but this methmizole can ruin your kindey's and I don't like how I feel any more. I slept all day long with this medication also. I have medication but I'm hoping this Synthroid will work and I can get back to living again.
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I forgot to mention that my anxiety got very bad in January and I was on 20 mg the first 2 weeks and then lowered to 10 and then 5. I was told by my first Endo since my levels went up, not sure if it was T4 or T3 but told to take 10 mg of methimazole. Well t he next day I started scratching again severely. So I went back to 5 mg and now I'm off for 5 days to do this nuclear test. I couldn't sleep at all during those first 3 months. God it's like a silent disease that no body can see but you feel.
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Thankyou for sharing your story. It does give us hope going through the same thing. I Also pray to god that I will get over this and go back to living a normal life Amen.
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Hello,
How do you feel now? My daughter has Graves and after taking Tapazole for 3 months start gaining weight. Her TSH is low, but T4 amd T3 basically normal. She takes 5mg. Healthy life style, supplements, herbs...
but it still scares me to get off Tapazole completely. Were you totally ok to gett off Tapazole? Please email me to ***this post is edited by moderator *** *** posting of private information such as name, phone number or email address is not allowed in order to protect your privacy*** Please read our Terms of Use Thanks so much!
Wish you all the best!
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