Carbimazole only?? Help!!!!

Hi

I was diagnosed with Graves' disease in august 2014 . I was initially put on 10mcg of carbimazole by the gp and was referred to a consultant at St George's, I was to have my first appointment with him in November but managed to get it earlier so saw him early October. My bloods showed I had deteriorated and he increased to 30mcg.i returned one month later. And he said My t3 has come down but tsh is still very low. He said I should remain on 25mcg and he is referring me back to gp.i was a little horrified and argued with him as I thought that my t3 came down very quickly on 30mcg in one month so if I am on 25mcg surly it will render me hypo!! He said ok we can compromise at 20mcg...I felt a lot of hand pain and foot pain and was thinking am I developing carpal tunnel syndrome and adked him am I going into hypo but he dismissed it that the pain was due to my body trying to get back to normal????..He never said anything about replacing with t4.so I have been on 20mcg since November and feel awful ...so cold ..heart rate being 50-60...so I stopped my carbimazole for a few days until I felt a bit better!! Then would take carbimazole whenever u felt I should!!!

Nobody ,not consultant, nor gp has told me to return for blood tests or to be on t4 !!! I've been so emotional,crying for no reason ,freezing cold,low pulse of 54. I went to gp to say I don't feel well and I'm very cold and pulse of 54.. He said it's cold outside and 54 can be normal pulse as I am slim!! Wtf????

I said I must be hypo!!! And if I'm hypo then what do? He said we can give you some t4??? I demanded blood tests and didnot want to talk to him anymore!!

Why have I not been on it from the start and is it normal practise to be on it when I start carbimazole???

Can anyone advise? Would really appreciate any advice .thanks

9 Replies

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  • If you have Graves', you should never be dosed by TSH, ever. Even after a thyroidectomy or RAI. The antibodies act independently of your thyroid levels. Docs just don't get that. This page may be helpful to you: tiredthyroid.com/graves.html

    A compassionate doctor would give you some T4 while maintaining you on a low dose of carbimazole.

  • Thank you ..will definitely have a read!! Really appreciate your feedback.

  • Really sorry to hear you're not being monitored or treated properly, you must be feeling so awful. I have graves and am treated with carbimazole.

    I think you're right in what your saying that you may have gone hypo. Can you post your blood results on here with the reference ranges and myself and other members will try to help. Your tsh is always the last thing to budge, mine took well over a year to even move slightly, you need to go by your t4 levels and titrate carbimazole according to results. You also should be getting bloods done every 4-6 weeks.

  • Thanks will get my results together and post them ..thanks alot.

  • Thanks joy ..Are you on carbimazole alone and on no replacement ?

  • Nas, Some doctors treat hyperthyroidism with Carbimazole only but as Joy said, you really need 4-6 weekly blood tests to monitor levels and avoid becoming hypothyroid. Others treat with 40mcg Carbimazole to completely block thyroid hormone production making you hypothyroid and add 50mcg-100mcg Levothyroxine to replace the blocked hormone. Once stable testing may be every 3-6 months.

  • No problem Nas. Yes I'm on carbimazole only, using titration method. To avoid being overmedicated and going hypo like you seem to be experiencing, I always have regular blood tests and then adjust the carbimazole if needed. It's taken a long time to find where I feel best on and able to function so that's why it's so necessary for you to keep a record and get print outs of your bloods every time you get tested. This way you'll be able to say to your gp or endo you feel better or worse when your t4 level is at a certain point and tweak your carbimazole accordingly. You will start to feel better, try to rest up and be good to yourself. It might be worth contacting your endo to discuss how your feeling and what the plans are eg block and replace or titration and that you need your medication reviewed due to feeling absolutely awful.

  • Sounds like you are hypo. I've got Graves, was started on 20mcg Carbimazole (by my GP) while waiting for my endo appointment to come through - it took three months - I was tested after a month on 20mcg. My T4 changed a bit but my TSH stayed the same. I then got a letter from my endo - hadn't seen him at this point - asking me to increase my carb to 40mcg a day which I did. Unfortunately I had no more blood tests until the week befor I went to the hospital to see the endo and by that time I had gone hypo. TSH had gone from <0.03 to 7.4! (0.35-5.5)

    Knowing what I know now I should have been retested after a month on the increased dose of carb, I was on too high a dose for too long. Felt awful, hair falling out, nails disintegrating, hand and foot pain like you.

    Anyway, my hospital uses block and replace so that first visit I was started on 50mcg levo with blood tests every six weeks.

    Yes, starting on carb only is normal practice, basically they start you on carb, wipe out your thyroid then once your levels are down (or in my case out because I was on a high dose for too long ) once your TSH rises to wherever they want it to be you start taking levo to make up for your thyroid not providing the hormone for you.

    They should be checking your bloods frequently throughout all this. I was always given a blood test request form at the end of each endo appointment, the idea being that I presented it at my local surgery ( they file share with my local hospital) had a blood test the week before I saw the endo.

    Throughout my treatment I found my body told me when I was needing more levo, it was usually about five weeks after they started or increased my levo. Once I reached 40mcg Carbimazole and 75/100 alternating levo a day I felt ok and that was where I stayed until they stopped the B&R

    When I started on carb my pharmacist said I should take vitamin c along with it but I already taking 1000mcg vitamin c with zinc, I also checked out my vitamins D and B12 levels and both were low so I supplement with these too as well as CoQ10.

    I try to eat a healthy balanced diet too with oily fish, chicken, lots of veggies and fruit. I love butter but don't drink milk so I also pop a vitamin K as well on my physios advice. Get as much rest as you can too.

  • I am on Carbimazole alone, much better than when I was on Block and Replace (for me anyway) I think its a lot easier to get an ideal dose on Carb alone to be honest.

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