Just diagnosed with overactive thyroid

I'm sat here shocked and stunned. I had blood tests as I thought I was anaemic... I went to doctors he said overactive thyroid take these pills...

I have panic attacks and General anxiety disorder but last 8 weeks been having bad physical symptoms such as lethargy, tiredness, heavy legs, palpitations etc. I don't know what to do now as I'm frightened of taking the pills, I'm sat here in tears worrying myself to death. The pills are Carbimazole. Has anyone got any words of encouragement please? I'm a physical and mental wreck just now

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  • Welcome to the forum, Karen321.

    Overactive thyroid (hyperthyroidism) means you are producing too much thyroid hormone. This is likely to make anxiety much worse until Carbimazole, an anti-thyroid drug, kicks in. Carbimazole will slow and regulate your thyroid output and this will improve your other symptoms. Many patients find 9-18 months on Carbimazole will regulate thyroid sufficiently that they can wean off and enjoy remission.

    thyroiduk.org.uk/tuk/about_...

  • I'm sorry you are feeling so bad at present. It is even more of a shock to be diagnosed with something you've probably never heard of before.

    Also doctors appear not to be aware that the diagnosis might come as a shock to a patient and not explain the 'ins and outs' of what has to be done, for the patient to be well-informed and assured about the treatment.

    I'm glad Clutter has explained as I am hypothyroid and hopefully your hyperthyroid will respond quickly to carbizamole.

    I'm not sure how regularly you will have to have a blood test etc. but at least you're taking something that will calm your metabolism down.

  • Hi, try not to worry, things will get better now that they know what is wrong with you. I've got Graves too - if you click on my name you will be able to see and read my profile.

    My first post on here was to ask if I would ever be normal again, the answer was 'yes' and sure enough I am or as normal as I was or I'm ever going to be :)

    Don't be frightened of the carbimazole, I know it sounds scary but it became my best friend - sad eh!

    Make sure you read the patient formation leaflet and pay attention. I had swollen glands and after a couple of day as it was coming up for a public holiday I went to my GP for a WBC blood test which was ok, I thought it was because I think I would have felt really ill and I wasn't, next time I had swollen glands we went for a 'wait and see' approach as I didn't feel particularly I'll apart from the throat and again I was fine. Just do what the leaflet tells you and insist on a same day blood test.

    Generally though I did well on it - my hospital treats with 'block and replace' which is when they give you carbimazole to block your thyroid production then replace it with thyroxine. I've been offered radioactive iodine should I relapse but I have said I don't want it unless it is the very last resort.

    There is another anti thyroid drug you can try if for any reason you have problems with carbimazole - it is called PTU

    My pharmacist told me to take vitamin C along with the carb and I always took 1000mcg with zinc, back then I used slow release capsules but they don't make them now so just find one you like.

    Even once I was started the carb it took a while until I felt 'normal' I was very, very tired, my other half took over all the shopping and cooking while I just drifted around resting and sleeping.

    Be a bit selfish and only do what you 'want' to do, not what you feel you should do. Delegate and generally be kind to yourself. You might not look it but you are pretty ill so treat yourself like an invalid until you start to feel better, you'll know when that is because y will actually want to do things - honestly you will.

    I felt as if I was mentally ill - or had Alzheimer's. My memory was shot to pieces, I was a mess. It was just awful. My thigh muscles had wasted away which meant I couldn't get up off the ground etc, I was super anxious, had the shakes, palpitations that woke me up several times a night, if I wanted to take my pulse all I had to do was put my hand on my stomach.

    You will need to see an endocrinologist and try to see one who specialises in thyroid one not diabetes.

    When you get to the endo take a little notebook with any questions you have listed as bullet points.

    Use this website - you will get do much information from it - I could NEVER have survived without. The advice, support and sympathy of the other members. Have a look at the Thyroid UK website - there is a huge amount of useful information there ranging from where to get private blood tests if you need to right through to book lists.

    Read as much as you can about Graves, ask questions, let your consultant see that you have read about your conditions want to be involved and don't be rushed or pushed into making any decisions.

    Good luck 😊

  • Thank you so much. I'm still in shock to be honest but at least now I know what is wrong. I thought I was going mad... I am physically very weak, I had to lie down after changing the bed. I have taken the first tablet and am now super anxious as I have a bit of a pill phobia.

    Is it really bad to smoke with this condition? I am trying to give up and have cut right down but really struggling with giving up completely

  • Yes, smoking is bad for Graves - especially if you get thyroid eye disease, I'd try to stop if I were you, cutting down is a good start though.

    You sound very like I was, I'd forgotten about bed making - mind you I was in it most of the time. Don't know about you but I broke out in a sweat whenever I tried to do anything. I had actually forgotten that I thought I was actually mentally ill and that I felt like I must have Alzheimer's - j

    When it came to changing the covers I found that if I put the corners of the duvet (super king sized - a monster!) in the right corners of the duvet cover and put a big safety pin on each corner my husband could shake it and until it was straight.

    It's a good idea to follow Humanbean's great advice - for a long time I kept a diary of how I felt every day, it was really useful, especially when I combined it with my blood test results, I could see exactly when I felt good and when I didn't. It helped me get an increase in thyroxine more than once.

    I was very lucky that my kids were grown up and away from home and because I'm retired there was nothing I couldn't cancel so I rested most of the time. I had elderly pensioner friends who were a zillion times more energetic than I was. If I'd had the energy to be embarrassed I would have been. It was just weird how ill you can feel with Graves.

    Good luck with the carbimazole - if you're not great with pills get yourself some vitamin C - Redoxon do 1000 + zinc that you can drop int a glass of water to make a fizzy drink.

  • With any thyroid problems it is a good idea to start collecting your blood test results so you can monitor how you are progressing. Keep a history of them.

    On the days that you have blood tests make sure you write down a comprehensive list of symptoms you have, how minor or major the symptoms are, and also note what meds you are taking - how often and how much. Once the test results have come through keep the symptoms list together with the results that apply.

    In future you can track how you are doing much more easily with all this information.

    You are legally entitled (under the Data Protection Act 1998) to a copy of your test results, including the numbers and reference ranges. A piece of paper that just says Normal after every test is useless. You need the numbers! Some receptionists and some doctors get prickly and defensive when asked for copies of results. So they ask what you want them for, will tell you they aren't allowed to give them to you, blah, blah, blah. But its rubbish - they are your results and you are legally allowed to have copies.

    Do expect to have to wait for the results to be printed - receptionists have to ask your doctor's permission to print them out, so ask politely and then return the next day (at a non-busy time) to pick up the information

    Expect to pay no more than a pound or two to cover the cost of paper and ink at the most, but if they charge a lot more than that then refuse to pay, and ask to look at them on the computer (which is free) so that you can take your own notes. They have to spare a member of staff to sit with you if you ask that, and so they often back down and just print them out anyway. :D

    GPs are often more amenable to printing out test results than receptionists, without a lot of hassle, so you could ask in a GP appointment - but don't make an appointment with a GP just for this purpose because the doctor will accuse you of wasting an appointment.

    And finally, if you have access to some of your medical records online, your results may be included in what is available. Everyone is supposed to have access to the their records online by now, but many surgeries are lagging behind.

    Be polite, don't argue, give them time to do what you have asked, and discuss getting copies of the records at quiet times during the day. Also, you will have to have some form of ID e.g. a passport.

    Having written all this I bet you won't have any difficulty at all. :)

  • I forgot to say...

    Once you have got copies of your test results you should post a new question on here and post your results for some feedback from the members.

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