hyperthyroid with graves

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 Hi. I could realllly use some advice. I was diagnosed with hyperthyroidism 8 years ago at age 16. Since then I have seen three different  endocrinologist, with each telling me something different I need to do. One says surgery, one says treat with medicine, and the most recent one says to do the radioactive iodine. For the past 8 years I have been up and down feel okay for a while then awful again. I have been dealing with severe anxiety, depression, mood swings, and a lot of dizziness. I have been taking methimazole for at least 6 years..yes 6 years! I recently found out this is very bad an can cause liver damage as well as many other affects. I really want to be off  ALL my  medication because I also take propranolol, sertraline (generic for zolof) and buspirone. As Im getting older and becoming more educated on everything, I feel like my primary care doctor has just been feeding me medication and doesnt really care to treat the real problem. Im unsure which treatment to do, they both really scare me. Any advice would help. Thank you.

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  • Posted

    I empathise as I'm going through the same thing and have seen two endos. Fortunately my current one is giving good advice.  I've personally made the decision to have surgery.  Carbimazole is not a safe drug and I don't want to be on it forever .  I can't be stabilised and go up and down according to the dosage.  I went into remission once and now the Graves gets worse whenever I have any stress.  I won't go through the rest of my life with no stress and I want to stabilise rather than be up and down and never feeling well.  Due to other auto immune conditions carbimazole is reducing the number of white cells in my blood and I've got to come off it.  I was offered RAI by my first endo.  I shouldn't have been as I have thryoid eye disease and it makes it worse.  Surgery is final and I'd rather take my chances with thyroxine.  I've had a very bad three and a half years and want it to end as I'm not getting any younger.  There are lot of patients who have successfully used natural remedies but they haven't worked for me.  .  I have all the symptoms you mention including nausea, itching, gritty eyes.  I even had iron defiiciency which is common in thryoid patients. I  think you are going to have to make a decision as I did because, even if you go into remission,  it may come back when you least expect it.  Good luck in your choice.  Some people feel strongly about keeping their thryoid but if it isn't working properly and causing problems it's better gone.  

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    • Posted

      Hi sue1247

      I know how you feel I was on carbimazole and it made me soo ill, I've had graves for the last 8 yrs aswell but only got diagnosis 3 yrs ago after pestering my gp for almost 12 months, locum doc did it in the end. I went into remission January and was feel great but in may I started feeling soo ill and the pains from cramps and the pulpertions in my chest were so bad I thought my heart was coming out my chest then the mood swings start and I call my endro nurse and they got me straight in and it was there 25.8 one ov the highest readings for me so they put me back on list for op as they sed to leave it before . I also have hypercalcima (if that's how you spell it )lol and have a parathyroid tumor that needs removing.

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    • Posted

      Hi delirious ye been really bad the last few weeks, been put back on PTU again. The bad back I put that down to a fracture of the spine in 2001 so can cope to a degree with that but the full body muscular pain is getting to me and I can not sleep well as it is.
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    • Posted

      I get bad muscular pain too. While the PTU is kicking in you could try amino acids and magnesium citrate. I've been back on double dose of carbimazole for 4 weeks and I'm.

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    • Posted

      Only been back on PTU for a week and half so they said let meds kick in. I have a pre op anaesthesia assessment tomoz so will tell them how bad it is still. I have cronic asthma aswell so they got to see if I can have general or they will use local to remove thyroid and parathyroid .

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    • Posted

      Will do just since it started again I am having trouble copping with the cramps I know for sure they wasn't this bad before x

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    • Posted

      I would labour the fact that you are having cramps and see what they say. I WOULD DEFINITELY ASK IF THE PARATHYROID  gland has got anything to do with this.. I have secondary parathyroidism and it is driving me mad.
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    • Posted

      Hi delirious I have a parathyroid adenoma on the left side and got to have it removed when I have my thyroid out. I have never suffered this bad with the cramps so not handling well . But will talk to surgeon tomoz and will let you know what they say
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