Hi all been a while since I posted because I thought I was better but for the last for weeks I have felt really off

I was diagnosed with graves last April and was put on carbimozle by September I could tell I was improving and wow by October I felt better . I could drive again no pain . Panic no depression . My blood tests were all coming back in the normal range but by Xmas I felt the first strange feelings in my shoulders pain and weakness so on the 4of Jan I had another blood test . My tsh came back as 3.1.my t4 10 and t3 _3 . I was taking 10milgrrames of carb and by then feeling dreadful. I am house bound again my muscles are weak and painful . I can't think straight . And feel very very low . But the

Doctor said my bloods are normal its the carbimozle that's making / me weak so I have to taper off them 5mgs a day for two weeks then stop. Has any one eles had this please as once a :) ain I am confused and depressed . To think I thought I was better how as stupid was I .

6 Replies

  • Not that I can help explain it but I'm having same problems

    I was diagnosed in June all though I have improved some what I have never had a day without symptoms I went to sleep he endo last week and she said that reducing amount to quickly is not good as the throid needs to stablise itself if there is to be any hope of remission I can't get my head around all these t blood tests and what's good or not but going from 10mg to 5 mg to nothing in two weeks seems not good endo said it should be stable for 3 mths before gradually weaning off

  • No you are not stupid. You just haven't had enough explanation as to what is going on in your body, and in your brain.

    When people have Graves disease they are given Carbimazole to stop their thyroid from producing too much hormone. Carbimazole is a powerful drug but it is not easy to control its effect on the body. Because of this it is often combined with Thyroxine, which replaces the hormone your Thyroid normally produces, in a process called 'block and replace'. You have been given the 'block', which has now successfully stopped your Thyroid from producing too much hormone, but now you are becoming hypothyroid - not producing enough hormone. That's why your TSH reading has risen to 3.1 and your T4 and T3 readings are near the bottom of the normal range (you don't give ranges but I am pretty sure this is the case). Look at lists of hypothyroid symptoms and you will probably relate to many of them. Depression is one symptom.

    Your doctor is right to tell you to taper off the carbimazole, and you will need regular blood tests to check that your thyroid is now behaving itself. Some people find they return to normal once they stop their carbimazole, others begin to gradually become hyperthyroid again, and others become temporarily or even permanently hypothyroid (so need the 'replace' hormone).

    One thing you can do to help yourself is to ask the doctor to test your vitamin and mineral levels. For some reason people with thyroid problems often have very low levels of Vitamin D, B12 and Ferritin, which can make you feel pretty rubbish. Your levels need to be healthy, not just crawling into the bottom of the normal range.

    Post your next set of results here and someone will advise. Good Luck!

  • Eeng thank you so much. Your post is helping me to understand my condition . X

  • Very good advice from eeng... you look very hypo, are you on block and replace? What about discussing with GP or endo about taking carb only, say 5mg and seeing what happens.... I didn;'t do block and replace, opted for monthly tests and titration of drug according to results, went from 40mg to 5mg over 18 months then 5mg every other day, Now off drugs. Touching a whole forest of wood and probably not out of them! I do take herbal mixture and have acupuncture, never eat wheat and go careful with food veering towards Paleo plus a fair amount of supplements. Again eeng correct in getting your vitamin levels etc measured. It is a fine balancing act. There's a good book I have called The Immune System Recovery Plan by Susan Blum, very helpful plus brilliantly easy, tasty, healthy and cheap recipes......xx

  • Thanks Tully .I am not on block and replace just taking carb . To be honset I feel very lost and confused its like 2 steps forward 7 steps back. I don't no if I have gone under active if I ask the go he just goes hmmmm could be ...... don't panic uhh our could have a worse disease . I see the endo on the 10th of Feb I will ask for all the vit. tests.x

  • Take someone with you to Endo....take notes, have idea of what you want...... don't come out feeling fobbed off. I really can't praise my endos' enough for listening to me and being flexible, all three that I saw. I always take notes, if I didn't then my husband would, it's amazing what the power of a pen can do when you are taking down what they say, not in aggressive way but just so you can be sure you don;'t forget. I always write up notes afterwards and have got booklet with all details of my blood results and ranges since I first started having them. Knowledge is power....x

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