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Carbimazole - low neutrophils WWYD?

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evergreen
evergreen

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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  • evergreen
    evergreen

    Posted

    Feeling rubbish today. I have this thing going on with my gums and teeth in that I can feel all the roots of my teeth and my gums are sore. I still have the jaw clenching. I feel weak but pulse normal at mid 60s do don't think I am really hyper or hypo. I still can't eat and am dropping weight. Every mouthful has to be forced. No point in going to GP as the only good one is now on holiday for 2 weeks. At least I see my endo tomorrow. This teeth thing and sore gums must be my neutropenia. My throat is covered in yellow/white lumps and inflamed but not dessperately sore. I'll show the specialist tomorrow. So fed up now. I look good, people keep telling me. This is such an invisible illness. At 53, I look ten years younger, have the same slim figure I had age 20, and I take care of myself and wear make-up etc. People just say, oh you look great, so slim and youthful. My sister told me I was doing a very poor job of looking ill and I looked beautiful. So I guess doctors just take one look and don't think there's a problem.

    • icecool
      icecool evergreen

      Posted

      You need a blood test doing to check for infection. CRP. ESR, white cell count.

      Ask for anti nuclear antibody and ebv ab test as well, ebv is for glandular fever. Should have throat swab taken as well.

      Not being funny but have u contacted the vet? They can rule out nay infection contracted from handling horses etc. Vets are usually more knowledgeable than drs as well.

      I would go to the endo without make up etc. They , meaning drs , do work off the premise that if u look ok then obviously there is nothing wrong, can't seem to get their heads round the fact that some people are very proud and/or try to ut a brave front/face on.

      Prhaps just write down in a note form how you feel and just put it in front of him on his desk then proceed to explain ask him to examine these yellow spots as you are scared it may be a streptococcal infection and that can damage your kidneys, ask if he can do a throat swab as GP on hols for two weeks and cannot get an appointment!!

       

    • evergreen
      evergreen icecool

      Posted

      Thanks, Delerious. I am hoping my endo (who is a surgeon) will know what to do tomorrow. I willl certainly show him my throat and if I don't feel confident in him, I will speak to my health insurers with a view to seeing someone else. I made myself pop into town to get some food from Marks and Spencers. It's more expensive but they have one or two things that I seem to be able to stomach better than anything else. After eating their salmon salad I feel a little better. Half my problem is getting enough nourishment inside me with absolutely no appetite. How are you feeling today?

    • icecool
      icecool evergreen

      Posted

      well not too good tbh. I know what u mean about food . It is the same for me. Best to stick to inorganis meat, veggies and fruit. I get fed up with choosing what to eat usually have an avocado and banana for brekky with one pint of milk. Then lunch another avodcado and a couple of organic eggs.

      I am cows milk intolerant but still drink it. The real killers for me food wise are corn, wheat, gluten so I avoid these like the plague.

      I drink tea. I also shop at Marks and Sainsburys but the joy of shopping has diminished considerably since finding out about the food intolerances.

      I usually have a home made stir fry with a piece of chicken , lamb , salmon or white fish for an evening meal. I eat about two bananas a day plus 3 avocados. I am getting sick of eating avocados now.

      I am also on warfarin so have to be careful about getting the same amount of vitamin K daily.

      I am glad that you are feeling better but please be careful when your heart rate falls as it was too low.  

      I am sure it was the medication but best to make sure.

      Appetite. Try to eat little and often when you do not feel like eating properly. Just a piece of cheese , a few brazil nuts as they contain selenium, in between meals that sort of thing. Check all your meds as some can suppress the tsh.

      Catch u later.

       

    • evergreen
      evergreen icecool

      Posted

      Thanks for that. Very helpful. I do find that once I can eat something (usually by around 2pm, that it kick starts my appetite to a certain degree and I can usually manage an evening meal. I probably have wheat intolerance too, but as I already don't eat meat, and find choosing food so difficult, I don't want to limit myself further. I mainly eat fish and salads. Occasionally I'll crave some chocolate buttons, so I usually have some of those in the fridge.

  • evergreen
    evergreen

    Posted

    Just a quick update, everyone. I'm not feeling very happy at all, but maybe I'm being unfair on my endo. Basically, I don't understand the reasoning behind my treatment. I showed him my blood results and he said that he was not at all concerned by the low neutrophil count or the low white blood cells and that I should not have stopped the carbimazole. He wants me to reinstate me on 5 mg. I questioned him because my TSH is now 4.8 and rising and my T4 is 13 so right at the low end and I am feeling so cold, have low pulse, very sore mouth and feel like I have the flu with my aches, pains and lack of energy. Where as, when my T4 was at 17 I felt great. So I don't understand why I have to go back on the carb. Can anyone explain to me? He also said that I have Graves even though I have never been tested. How does he know it is not a type of hyperthyroidism that turns hypo? I told him I felt left high and dry and he then agreed to do some antibody tests. But I won't know the results until I see him next time which is four weeks away.

    ?I am not happy, but have taken my carb and am going to give him the benefit of the doubt and be an obedient patient until I see where this thing goes. But in the meantime I have a horse livery yard to run and I am totally wasted. Am I just being a stress head, or should I be concerned about being on the 5mg of carb? Thanks

    • sara51384
      sara51384 evergreen

      Posted

      Hi Evergreen,

      I do feel your frustration and completely understand why you would question him wanting to put you on 5mg. I would definitely question it too. Obviously i can't advise you at that. But just to let you know I have confirmed Graves and because I was on too high a dose of carb I have gone hypo (so it does happen). I've now been told not to take carb for 1 week to give my body a rest. I will then be re tested in 1 week and probably go back into 5mg as he is expecting me to go hyper again which he would prefer than for me to continue to go hypo.

      It does seem very odd for you to go back onto carb when your Tsh is so high. My Tsh is 1.1 but my FT4 is

      6.4. Sorry I can't be of any help ....but I feel your frustration sad

    • linda187
      linda187 evergreen

      Posted

      What drove your TSH up was the combination of Carb and Acetyl-L-Carnitine.  If you have stopped the Acetyl and even the Carb for a few days, your TSH will drop and your Frees will rise.  Don't remember the last dose of Carb you were on but 5 mg is not a high dose.   If this is a lower dose, and you have stopped the Acetyl, the TSH will drop.  I disagree with his attitude towards antibodies though.  Every good clinician I know here in Canada tests for them at time of screening for diagnosis.  They don't test them often thereafter but if you become euthyroid (all thyroid lab tests within the normal range) then they test again before discontinuing the Carb or Methimazole because if your antibody level is still high, you should not discontinue the meds. 

    • evergreen
      evergreen linda187

      Posted

      Thanks, Linda. I think I have stopped the acetyl now for 3 days and the carb since last Friday. I was taking 10 mg of carb for the 3 weeks before that, and 20mg for the 3 months before that. At least I am still having my FBC done on Thursday and the results are normally back the following day so if my WBC count drops again I will know pretty soon. My endo did say that if my mouth and throat got unbearable that he was happy for me to stop taking the carb but ideally he needed to see my body's reaction to 5mg of carb over the space of 3 weeks to see if my T4 goes up or down. I guess that makes sense. I am just so frustrated with this disease and feeling so rubbish and useless.

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