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

    It would be more informative to know the value of the neutrophil count. I have been taking Carbimazole for over a year now. Initially 30mg now down to 2.5mg per day. My neutrophil count has been below the low range for the past year. Normal range is 2.0 - 7.5 [x 10^9/l]. My blood tests show values between 1.29 - 1.8. Even though I have neutropenia it was never severe enough to warrant stopping the thyroid medication. Also the other white blood cells were not significantly suppressed so that the total white blood cell count was just slightly below the normal value. 

    Having said that, you should be very careful if your neutrophil count is below 1 x 10^9/l. Do you know the value of your total white blood cell count? If your GP suspects that you have bone marrow suppression he should have advised you to stop taking Carbimazole. This side effect can happen even if you take a low dose and even if you tolerated Carbimazole before. 

      

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    • Posted

      Thanks, Dan. I have just checked my print out and my neutrophil count is 1.34 (normal range 2 - 7.5) and total white blood cell count is 3.6 (normal range 4.5 - 13). So total is about 75% of the bottom of the normal range.
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    • Posted

      My GP rang me on Friday morning and did not seem to know what to suggest. He left it to me to decide whether to continue taking a reduced amount of carb or drop it all together. He printed the results off for me to collect and to take to my endo next Tuesday when I have an appointment. I will talk to my endo then but was asking what others would do in the meantime bearing in mind it is the weekend and doctors are not generally available for discussion.
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    • Posted

      I did not know the dr had said this. You need to go to hospital for blood tests. Please ring 111 or just turn up at a and e. Advise 111 you feel breathless etc, They can do an ELinda is right.

      CG , temp, blood sugar, neuro exam.

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    • Posted

      whoops. ECG . Linda is right you need a dr please ring for one via 111 or get the paramedics out to check you ovr they can do an ecg advise gp said that you ned to dr if not feeling better over the weekend.
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    • Posted

      Thanks Linda and delirious. I nearky went to A&E last night as felt dreadful and briefed my husband what to do if I became unresponsive. But I have felt better today. Not good, but not desperate and feel slightly better this evening. I have slow pulse (around 50) but have now eaten and feel less faint. Definitely an immprovement on yesterday and last night. I will go to A&E if things deteriorate again though. I definitely think I made the right decision to stop the carb when I did. It was just so stressful not knowing if I was doing the right thing. I am not a typical patient. My initial symptoms before hyper diagnosis were anorexia and weakness, not increased appetite. I now have that again but am hypo and losing weight again. Doctors look at me and say I look fine. It's very frustrating!

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    • Posted

      Glad you are feeling better. I would advise ringing 999 and telling them that your heart rate is only 50 that you fel faint.

      The aranmedics can do an ECG at yur home. They can ring ooh drs for you if in UK and then u can speak to a dr directly. Quickest way is to ring 999 re your low heart rate and faintness. That is sufficient reason to get a paramedic to check you out. You really do need to have someone checkk you over.. 

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    • Posted

      Linda is right. Please ring 999 your heart rate is too low.

      Can you change your GP and surgery . Can u contact your endo at all. Are u in the UK?  Sure sounds as tho you are.

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  • Posted

    Try the 5mg to see how you feel. You will not be at a high risk by lowering it.  Obviously 10mg is a bit to strong for you if you're feeling awful w/sore throat, swallow gums & fatgue. That's no way live or feel.  Prehaps you should get tested again or find a new GP. Hope it all works out in your favor. Good luck to you dear. 

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    • Posted

      Thanks. I am just worried about my immune system crashing. Everything I find about it says to cease the carbimazole immediately if you get neutropenia, so I'm a bit scared to take even 5mg now.

       

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    • Posted

      That is true.  If you have neutropenia you need to stop Carbimazole temporarily for perhaps a week or so.  But then you will need to resume it at a lower dose when your CBC improves.  And when you do resume it, don't add the Acetyl unless your TSH is extremely low and then only at a low dose for a short period of time.  Your doc should be able to guide you on the Carbimazole stoppage and dosage.  However, really important that you get off Acetyl right now.  In my case when my TSH rose to the 2.5's, I adjusted my Acetyl dosage or stopped it altogether or took it every other day.  My doc would always adjust my Methimazole dosage down if my TSH hit 2.5 or 2.7.  So my TSH never went over 2.7.

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    • Posted

      You are going to have to restart the Carbimazole at some point.  Right now you are hypo but if you stop Carb and especially Acetyl, your values are going to change again so real important you know how to adjust as well as doc knowing how to adjust meds.  I was very fortunate that my doc worked so well with me.  For Acetyl I always knew I had to lower dosage or use alternate days or stop altogether if my TSH went up to the mid 2's and my doc worked really well adjusting the other so I consider myself very fortunate.

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    • Posted

      No I live in Toronto Canada.  We had a bit of a rough go at the beginning until he got used to me and then he was wonderful.  I mean my Endo.  He was kind of afraid of me.  He said to his resident "Be careful, she is very knowledgeable"  but now I think he has gotten over that.  My GP was great since I first got him.  Even with him, we sometimes disagree but we are always able to talk it out.

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    • Posted

      You're very lucky. I'm struggling with my GP and endo actually listening to me. What they say goes and no arguments irrelevant to how I'm feeling. It's great to hear that there are some out there that will listen and discuss things smile

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    • Posted

      Sara I think the thing is I view docs as educated mortals and not as Gods, as I have worked for docs for enough years now to see that they are very much human.  They are not used to that and they are not used to being asked the kind of questions I ask them.
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    • Posted

      The more research you do and the more you trust yourself after reviewing all the information and making your own decisions, the more firm you will be with them and the more they will listen to you, i found.  I had to have a fibroid removed once and my gyne told me that anything but a hysterectomy was dangerous.  They can remove the fibroid only (that's called a myomectomy).  I had 6 consults with different docs before I settled on the one who would operate and he did a myomectomy because I was determined I wasn't going to lose my uterus.  I said to my GP who had to refer me (I guess you think i am crazy eh?).  He said, "No, not all all".  My last consult was with a doc whom I knew as a resident and he was very honest with me and told me who was the best in town.  So I got referred to him and had my myomectomy.

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    • Posted

      Yes I can understand the more knowledge you have the more you can stand your ground. This is all new to me as I only got diagnosed with graves 3 months ago and was a complete shock. For the first 6 weeks I was only put on 5mg for 6 weeks before I saw my Endo as my dr had never come across a patient with graves before as she was very young. Once I saw my endo she tput me on 30mg. 6 weeks later my TSH has gone from <0.001 to 1.1 and my FT4 from 29 to 6.4. So things have happened pretty quickly. But she has insisted on only reducing my dose to 20mg although i argued that was too high still. I have spent the next two weeks mostly in bed!

      I've since seen my doctor who refuses to make any decision as she insists I need to speak to my endo before changing my dose. Since it was a Friday I've not been able to contact her so this weekend I have dropped my dose and I have felt great! I just wish they would listen to the individual and not go on how they think the average person would react.

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    • Posted

      What did you drop your dose to?  I was never on higher than 10 mg.  On that dose my FT3 and FT4 normalized but my TSH remained at less than 0.001.  I am glad my Endo at that time dosed me on my Free's and not on my TSH because I don't think I could have tolerated the higher doses.  When it came time to reduce my dose, she dropped it too fast from 10 to 5 and a couple of weeks later, I felt my symptoms returned so after discussion with her she agreed to raise it to 7.5 mg.  I have found that small decreases worked better for me.  I think 10 mg was my maximum to tolerate though so I am glad I did not need a higher dose.  Then of course I found my vitamin and amino acid deficiencies and started supplementing them and that made a huge difference in my outcome.

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    • Posted

      Hi Linda,

      ?I've dropped it to 15mg.  It's interesting to see how different Endo's approach it.  It took me a while to get used to the high dose as it gave  me awful stomach aches, stiff joints etc. etc.  but once my body got used to it it was fine.  I guess my Endo was probably worried about dropping it too much too quickly.  But I feel absolutely shattered today and just hoping that my FT4 has not gone down even lower.  Although yesterday I felt great.    I see  my Endo in 3 weeks and if I'm still having days like this I'll try and call her next week.    How long did it take you to normalise your FT3 and FT4 on that dose?  What is your TSH now?  How  long has it been since you first started taking medication?

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    • Posted

      I wish I knew what caused my over active thyroid. At first my GP said I had Graves, but since I have gone hypo he says it may have been hashimotos as some people go hyper first and then end up hypo. I am going to have to press for answers from my endo on Tuesday because if I have Hashimoto's, there is no way I should go back on carb. Of course, I probably am just hypo because of nearly 4 months on the carb (mainly at 20mg), but I have been off it since Friday and so far no hyper symptoms. I am still hypo as far as I can tell. Pulse is back up to 57 this morning, so more normal.

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    • Posted

      Your endo's appraoch makes no sense to me at all. My GP put my carb UP to 25mg when my T4 got into normal range. It made no sense to me and I felt terrible so I dropped 5mg and felt much better. Then when I felt awful again I halved it to 10mg and felt better again. I told my GP what I had done and he agreed it was fine. I feel as though I have been left to decide everything for myself. Then I saw my endo for the first time last week and he wanted to wait another 3 weeks for bloods and then see me after that. I argued that I felt poorly and he agreed to having my bloods done last Thursday. Good job I stood my ground or my neutropenia would not have been picked up and I would be continuing the 10mg of carb getting more and more hypo. I have no faith in any of them if I'm honest. I will therefore not go against my gut instinct if something does not make sense to me. We know our own bodies, and if we feel ill, then something is wrong. I would probably drop my dose further if I were you, but that's just me and it can be dangerous going against doctors' orders.

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    • Posted

      Yes it didn't make sense to me either.  I know they need to still keep me on the Carb until my TSH is around the 2 mark and at the moment it;s 1.1 but you are right it seems a very high dose bearing in mind I seem to be reactiving the medication very quickly.  I have reduced it now to 10 and 15 mg alternative days and I'm feeling much better.  I'll keep you updated as to how i'm feeling.  Have blood tests again in 2 weeks and see endo in 3. 

       

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    • Posted

      No, nothing. It seems ridiculous really. I am suddenly feeling much better this afternoon and my pulse is now up to 70. I stilll have the terrible jaw clenching and teeth grinding but don't feel so ill and lightheaded any more. It's so strange with this illness how you can change dramatically within hours. I wish there was a home test you could get to monitor your own T4 levels. It makes you feel so high and dry when you have to wait for weeks between tests and appointments whilst knowing you are not right. I hope you get sorted soon.

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    • Posted

      That's ridiculous that it was confirmed Graves or Hashmito's!   

      ?You can buy tests off  the Thyroid UK website. 

      ?Glad to hear you're feeling so much better smile

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    • Posted

      Thanks, Sara. I will have a look. I sometimes think peoplle must think I'm bonkers. I run a horse livery yard and so have to do physical work every day, but when I'm well, I also break in and train horses. One minute I can do things for my clients, the next, I am telling them I'm too ill. I seem to change so quickly from well to feeling dreadful.

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    • Posted

      I was diagnosed in 2007.  I was started on 10 mg of Methimazole and my FT3 and FT4 immediately came into the high end of the normal range but my TSH remained at less than 0.001 for 2 years until I added the supplements to my meds.  The Acetyl L-carnitine especially raised my TSH, lowered my Frees to the bottom of the range but never out of range and my TSH currently is around 1.25 to 1.50 which is where I like it and my Frees are right in the middle of the range.  I no longer require Acetyl-L-Carnitine and I am currently on 2.5 mg of Methimazole on alternate days.  However, while Acetyl was very important in my recovery, it did require a lot of monitoring and adjusting.  You can't just take it and do nothing for 3 weeks.  I adjusted it a lot, either lowering it, taking it on alternate days or stopping it altogether.  My doc adjusted lowering my Methimazole dose throughout all this but I am happy about the choices I made.  It appears that because Acetyl-l-carnitine crosses the blood-brain barrier, when combined with Methimazole (or Carbimazole in England), it seems to make the Methimazole work better or get to the part of the pituitary where it is needed.  So therefore, you can take less methimazole because the Acetyl makes it more potent.  That said, you have to be extremely careful not to go hypo and have a doc that will cooperate with frequent blood draws so you can adjust it. Since it worked immediately to raise my TSH, it seems to me that it helps to lower antibodies.  Without research on this, it is difficult to say for sure why it works but nobody I spoke to is interested in doing research because there is no money to be made on this.  Also, I have read that autoimmune diseases like Graves are triggered by stress and that was certainly true in my case.  In my opinion, diet and supplements are really important as well as medical care.

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    • Posted

      I am fairly positive what caused your hypo was the Acetyl-L-Carnitine you took.  I have seen others do this.  You cannot just take a dose and not have more frequent testing or adjusting of that dose or stopping it altogether.  If your Methimazole dose was 20 mg, taking Acetyl along with it made it work like 40 mg.  It is easy to determine whether you have Graves or Hashimoto's or both together by testing antibodies.  My Graves was triggered by stress of working with an abusive co-worker.  I came across some information by a medical intuitive who believes that autoimmune diseases are caused by viruses that lay dormant in your body, particularly the Epstein Barr virus and when you are under stress, the virus gets activated and that is what your immune system is fighting. So finding ways to reduce stress, eating a healthy diet, taking supplements for vitamins, minerals and amino acids your body is deficient in along with medical treatment gives the best support for recovery.

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    • Posted

      Linda Sorry to butt in but you are so right. I started being ill 3 years ago . I paid for private blood tests that showed exposure to EBV, nil done. Thyroid nodules diagnsed last year with low TDH and TPOAs abs,

      Feels like it is all starting again with  muscle aches everywhere, feeling exhasted depressed etc etc. Gp refuses to do any blood tests .Peripheral neuropathy and numbness of the bottom.

      Depressed all the time.

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    • Posted

      HI Linda,

      ?I phoned the hospital today to speak to my consultant about my latest blood tests to find she had gone on holiday as even though yesterday I felt good...today I could barely get out of bed!   A lovely Dr Dove has just called me back after looking at my notes (my consultant is a colleague of his) and he has strongly advised me to stop taking Carbimazole for a week as my body clearly needs a rest from it.  In a week start taking 5mg and he is going to send me a blood test form to have tests in 1 week.  I'm so releaved to fnd someone that is actually looking at my notes properly and treating me as an individual smile  Am very happy smile

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    • Posted

      Sara, I am so happy for you.  Every patient deserves this kind of treatment especially with this disease.  Good work Sara in obtaining the best care for yourself.
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    • Posted

      What a relief. I hope that you can see Dr Dove in future rather than the woman who left you on that too high a dose of carb. It really makes you wonder how some of these doctors even got where they are.
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    • Posted

      Thanks smile. I'm not sure how it works but yes that would be nice to continue seeing him. I've no idea really what was going through her head ! It's just such a relief! Hope you're beginning to feel better smile

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    • Posted

      Hi

      If the consultant you spoke to today hasadvised you then your usual one may take notice and follow suit. Are u in the UK?

      I need a good endo. LOL.

       

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