Carbimazole - low neutrophils WWYD?

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My GP has just rung to say my neutrophil count is really low. I am currently on 10mg of carbimazole and my tsh is 4.75 and T4 is 13 so I am heading for hypothyroidism in any case. I see my consultant on Tuesday, but am tempted to drop my carb all together. I don't really think my GP knew what to suggest and I suggested cutting to 5mg and he agreed, but now I am thinking I may as well just drop it as too much of a risk. I have fatigue, sore swollen gums, my throat is slightly sore and my tongue is swollen. What would you do? Thanks

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  • Posted

    What was your initial diagnosis ? It sounds like you're not getting necessary support? GPs aren't good with thyroid disease, so go for a specialist, insist on referrals.

    dont self medicate, that's disastrous with thyroid!

     I have Graves' disease, I was hyper, think I'm heading for hyp right now, I'm so tired. I was T3 toxic, my t4 is still awful, and I'm on 30 mg carbimazole a day, reduced from 40 ..

    my gums ache, my jaw clenches, my head feels like it's got weights on .

    if you feel as bad as I do you have my empathy .

    dont suffer in silence, look for help.

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    • Posted

      Hi Jan, my initial diagnosis was just an over active thyroid with TSH , 0.001 and T4 47.  I just picked up my result print out from yesterdays bloods and my TSH is 4.8 (0.27 - 4.5) so I am hypo. I saw an endocrinologist last Tuesday and I am seeing him again next Tuesday so will bring my printout with me. According to my TSH I am now hypo, but my T4 is 13 so low but within normal range. I understand exactly how you feel with the jaw clenching and gums aching. They are hypo symptoms. I dropped my carb to 10 mg myself after a week of it and within days it improved but is now starting up again. I had to push for my bloods to be tested early because I knew I was not feeling right and it's a good job they were because now my white blood cell count has dropped. My consultant agreed to the 10 mg after I told him I had dropped it, but now I feel scared that my white blood cells will crash completely, and so am tempted to drop the carb all together. I think you have to listen to your body and I now feel as though it is poisoning me. When did you last get your bloods tested? It sounds as though you are hypo.

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  • Posted

    I am in a similar position. I have been on 30mg of carbimazol fir 6 weeks and my FT4 went from 29 down to 10! I got a phone 2 weeks ago to tell me the results which I knew already as I was in bed at 2pm in the afternoon when she called. She advised me to reduced to 20mg a day but 2 weeks later I'm still having days where I can't even get out of bed! Luckily I work from home otherwise I wouldn't have coped. I would have thought after 2 weeks I should have seen an improvement. Going to see my dr today as npt seeing consultant for another 3 weeks.

    Sorry you feel so rubbish.

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    • Posted

      20mg a day is still a very high dose, especially if your T4 was so low. I would have thought you should be on 10 or even 5mg. Sometimes we have to push to get things looked at sooner than the docs would like. You know your body better than they do and it sounds as though you have crashed into hypo. I hope you get it sorted. Don't be afraid to insist you are not right and have another tests asap.

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  • Posted

    GP will probably suggest stopping the carb due to the serious condition of reduced white cells. Sorry. Has RAI been suggested?
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    • Posted

      I think that as I am now hypo, I will stop the carb myself. I see the consultant next Tuesday and just don't want to risk my immune system crashing any further. I'll just tell him what I've done and go from there. Thanks. No, it hasn't been suggested yet. My consultant was hoping to keep me on a low dose of carb for a further 14 months and then take me off it. He said I would have a 50:50 chance of remission. But now after this fall in neutrophils, I don't know. Personally, I would like to try just taking acetyl l carnitine which has already helped me get my TSH back up. I'm going to keep on taking this until I see my consultant next week.

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    • Posted

      You should have stopped the Acetyl-L-Carnitine especially when your TSH rises into this range.  This is what caused it.  The body is very sensitive to this especially when it is combined with Carbimazole.  While Acetyl is a good tool to help the Carbimazole work, it is so sensitive that you need to know how to work with it because it works very quickly.  When you see your lab values change such that your TSH rises and your T4 lowers, you need to either lower the dose of it or stop it altogether.  It usually requires both stopping it and adjusting the dose of Carbimazole.  Your doctor should also know that you are on it.  It does not work as well on its own so stopping carbimazole should only be a short term measure then it needs to be restarted at a lower dose.  But you really need to stop the Acetyl now until your lab values improve.
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    • Posted

      Thanks, Linda. Yes my tsh was stuck at <0.001 until taking the acetyl l carnitine, then it shot up within weeks. I have taken 400mg this morning thinking it would compensate for not taking my carb, but I didn't realise it worked in tandom with the carb.

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    • Posted

      Because Acetyl-L-Carnitine crosses the blood-brain barrier, it is almost like doubling your Carbimazole dose so you really need to be cautious when using it and know how to lower it or discontinue it at times.  Your doc should be adjusting your Carbimazole dose.  In my case, my doc adjusted the Methimazole dosage and I either adjusted the Acetyl dose downward or stopped it altogether at times.  My doc and I worked well together on this.
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    • Posted

      I sent u  PM. Please do not do anything drastic. I do not know if it is safe to stop taking carbimazole. please check all this out with your endo first or at least with a pharmacist even contacting a couple of pharmacisyts. Perhaps u could try ringing your endo's pa ?

      ?Please do not put yourself at risk.

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    • Posted

      Thanks. I feel dreadful right now. No racing pulse or other hyper symptoms but severe fatigue and nausea. I might take half a pill but I am scared it is poisoning me now. I hardly have the energy to raise my head to type this. I don't know what to do. It can't be withdrawal from carb as I don't have hyper symptoms and was hypo yesterday according to my bloods.

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    • Posted

      I agree with Sara.  You should not be playing around with Carbimazole dosages but rather reporting to your doc how you are feeling and let him/her instruct you on the dosage of Methimazole.  Going to an Emergency Department is a good idea.  I would do that.  What you are experiencing now are hypo symptoms which can be just as bad as hyper symptoms.  
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    • Posted

      Thanks. I am feeling slightly better this morning. Definitely don't want to take carb at the moment. My pulse is only 55 so certainly not hyper. I'll keep an eye on things though as feel so lethargic and depressed. But I think not taking my carb was the right decision in view of the fact that I now appear to be hyper and my depressed immune system.

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    • Posted

      Probably because we are functioning so poorly. I was diagnosed with clinical depression and put on anti depressants for four years. It turns out this was all due to my thyroid. I am off the ADs now but until my thyroid is sorted, I know I am doomed to suffer depression. I hope that you start to feel better soon. It really is a frustrating illness.
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    • Posted

      Thanks evergreen. AtM going through a very bad time due to new GP at new surgery. Will have to change to et peace of mind.. He refuses to do blood tests mainteining that one only needs to have antibodies checked ONCE in one's lifetime. 

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