newly diagnosed

I have just been told my thyroid is not working, after months of not feeling well. I have COPD and seem to be constantly having flare-ups which I was given antibiotics and steroids for. I started to bruise very badly at the slightest knock I was told this was a side affect of steroids, it makes the skin fragile, but a new doctor in the surgery asked for blood tests to make sure and it came back that my thyroid was "not working" as she put it. I was told there were two treatments radio active iodine or Carbimazole I am allergic to Iodine it blisters me so I have been put on Carbimazole starting dose of 20mg more blood tests in 3 weeks. I don't know what my levels were, but I am rather annoyed when I read the symptoms for an underactive thyroid, as these are things I have been complaining of for months to my GP. Some of the symptoms also seem to mimic a flare up of COPD. I have read a few posts but no one seems to be on Carbimazole . If there is someone out there who is on or has been on Carbimazole I would be interested to hear from you

11 Replies

  • If you type Carbimazole into the Search Box on the Green Bar at the top of the page and press enter on the keyboard - relevant posts will appear.

    Sorry to hear you have been suffering for such a long time and hope you soon feel better.... There are many people here taking carbimazole so I am sure they will soon be along to help :-)

  • Are you sure your thyroid is not working? If you are on Carbimazole, this is to slow down a thyroid that is being triggered to work too much and has gone overactive, not underactive. I am confused. I suggest you ring your surgery and ask for the blood tests results from which you were diagnosed and post here for more advice. The normal treatment for a non working thyroid is Levothyroxine. Sorry to sound suspicious but GPs are not always up to speed on thyroid matters and if your thyroid is "not working", the last treatment you need is Carbimazole.

  • I have an over active thyroid and graves disease have been on carbimazole for 18 months I find them ok I will not have rai I will hang on to my thyroid as long as possible do not want to end up like so many of the other people on this site taking years to get the right medical advice

  • I suspect my GP meant to says not working properly and I was so stunned I did not question what this involved ,my GP is referring me to a specialist and I am due more blood tests in 2 weeks to check my levels I now know more about the condition so will ask the right questions. Thanks

  • It certainly sounds from your treatment options that the doctors think you have an over active not underactive (or not working) thyroid. Can you ask for your blood test results? Lots of people on here can give you advice if you post these. The radioactive iodine is usually a last resort for over active thyroid.

    If you have COPD, have you joined the British Lung Foundation community here on Health Unlocked? I have both lung and thyroid problems and the BLF folks are very nice.

  • thank you for the info, I contacted the surgery to Query the diagnosis ( You are right I do have an overactive thyroid), it has taken almost a month to get an appointment with the same GP who discovered the problem. I wanted this as I have been complaining about feeling really ill, worse then my existing problems should make me feel for two years, and until this new Dr joined the surgery I felt ignored or told" you are on the best medication for your health issues". no check made to see if I had any other problems. despite the fact that every symptom I described is a symptom of an over active thyroid I have now seen a respiratory specialist, it seems that one of the symptoms of Over-active thyroid is also breathlessness, the respiratory specialist thinks that it could have been my thyroid condition and not COPD flare ups causing the breathlessness . my GP was treating these with anti biotic s and steroids which just before my diagnosis I was on for two weeks out of every four. I . have an appointment to see an endocrinologist at the end of November, the first available slot. sadly going private is not financially possible as I am on a state pension my GP has just reduced my Carbimizol from 20mg to 10 mg daily as she says the blood test shows I am responding to the treatment. Is it early to reduce? I have only been on the Carbimizol for 4 weeks and she says my levels are still low but responding

  • Carbimazole is only for those who have an OVERACTIVE thyroid. I used to bruise easily also when I was overactive, but years later, now my thyroid is UNDERACTIVE & I still bruise easily.

    A brilliant older doctor at Salford Royal Hospital advised me many years ago NOT to have radioactive iodine treatment because I also have what they now call thyroid eye disease (grave's eye disease).

    I suspect your doctor just said the wrong word. I would advise that you ask for a scan & referral to an endocrinologist who will sort out many different tests.

    Once you get on the thyroid treadmill, you will see how many of your symptoms will disappear eventually. But it can be a very long process to get medication & treatment correct. Good luck.

  • Thanks for your advice, I suspect what my GP meant to say was my thyroid was not working "properly", and I was so stunned to be told it was my thyroid when it was supposed to have been checked out and found to be fine I did not ask the relevant questions, after all I had been told that the problem was the side effects of the steroids I was being given for my COPD flare ups.

  • Hello Saab93,

    Sorry to hear you are suffering, I personally haven't been given Carimazole, but along the lines of your COPD - have you spoken to the Dr about a Nebuliser, my partner has found this extremely helpful. He was always having flare ups and being put on Antibiotics and Steroids until he got the Nebuliser.

    Best wishes

  • You need to post your test results make sure the right ones were done, which i doubt they were. You are being treated for an overactive thyroid..weight loss, anxiety, trembling etc..

  • having read a number of the replies on this site I suspect what the doctor meant to say was that my thyroid was not working properly. I am back for more blood tests in 2 weeks so I will make an appointment to see the doctor a few days after when the results are back. My GP said she was referring me to the hospital and they would probably do a thyroid scan. I have only been on the Carbimazole for a week, but I have noticed the hand tremors are easing. so I am keeping my fingers crossed. I tried to make an appointment but there was not one available for 10 days I can have a return call from the duty doctor, but I would rather sit down with the doctor and discus the results. Thank you everyone for your advice and information I now know what questions to ask when I do see the doctor. Saab93

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