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I was diagnosed 5 months ago with overactive thyroid. I have been taking carbimazole for 5 months.

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jac14
jac14

I was diagnosed 5 months ago with an overactive thyroid and I have been taking carbimazole go 5 months. My T3 and T4 are in normal range now and have been for last 2 months and take just 2.5mg carbimazole a day now. TSH is 0.01. But for the last 6 weeks my hair is shedding and have lost 30% of hair. I don't know why I am losing my hair NOW! Hair loss is usually when you are really ill but I'm not now and haven't been for a long time. I know carbimazole states side effect alopecia but I'm shedding all over, no bald spot. My question is to anyone is if it is my tablets why has it taken so long for me to get side effect? Usually you get side effects in first month.

Please help.

0 likes, 15 replies

15 Replies

  • sara51384
    sara51384 jac14

    Posted

    I am at the exactly same stage as you. Was diagnosed 4 months ago and T4 in normal range now but TSH is 0.1. I had started losing hair at the beginning but it stopped and now it has started again I think because my TSH has gone low again. My TSH rose to 1.1 when I was on a high dose but my T4 went low to 6.4 so my medication was reduced to 5mg. I think the hair loss is the low TSH.
    • jac14
      jac14 sara51384

      Posted

      Hi Sara,

      Do you know what TSH level should be to stop hair loss?

      Ja

    • sara51384
      sara51384 jac14

      Posted

      Mine went to 1.1 but i'm not sure at what stage the hair loss stopped.  All I know is that it has returned and my TSH is now 0.1. 

    • jac14
      jac14 sara51384

      Posted

      Doctors and thyroid specialist don't care because they just blame it on thyroid disease . They just sat T3 and T4 are in normal range but they have never told me what is normal for TSH. I don't know if 0.01 is too low or too high because they just don't care because it's not happening to them. Feel depressed.

    • Guest
      Guest jac14

      Posted

      I would advise you to ask your GP for a printout of all your blood tests. This will help you understand your results (and it will be good to have them anyway for future reference). Next to each test you will find the unit (different labs use different measuring units) and the normal range. 

       

       

  • Guest
    Guest jac14

    Posted

    Hi jac14, just to let you know that hair loss as a side effect occurs usually with a delay of 1-3 month. Basically, the hair follicles shut down the production but the hair does not fall out immediately. For more information you can google hair phases (anagen, telogen, and exogen) or follow the link on this site regarding telogen effluvium:

    https://patient.info/health/telogen-effluvium

  • linda187
    linda187 jac14

    Posted

    The medication may be controlling the excessive thyroid hormone production but your TSH value is still in the hyperthyroid range.  You did not state whether your hyperactivity was due to Graves disease but these are the kind of values that are consistent with it.  My TSH was less than 0.001 for two years until I did some research and added supplements to my treatment program.  This hyperactive value indicated for me that my antibody levels were still very high until I added the supplements, then my TSH rose into the normal range and my antibody levels are now normal.  I have experienced hair loss as well but I noticed that it was really bad with certain shampoos.  2.5 mg is not a high dose of meds.  I take this every other day so I don't feel I can point to the meds as a cause for my hair loss.  When I changed shampoos, it did help a lot.

     

    • jac14
      jac14 linda187

      Posted

      Hi Linda

      Yes I was diagnosed with graves disease. I'm struggling to understand because I was at my worst 7 months ago(as it took my stupid doctors 8 weeks to diagnose me). I was diagnosed April 1st. My levels were 4 times higher than normal. I was really ill weigh loss, rapid heartrate, aching muscles, anxiety but no hair fall. I just don't know why it has taken do long hormone me to start losing my hair now.

      I am hoing to ask my specialist if it's because my TSH level 0.01 and has been fir last 10 weeks. I have read normal on medication should be between 1 and 2.

      Jac

    • linda187
      linda187 jac14

      Posted

      Yes unbalanced thyroid levels can be one cause of hair loss.  I have sent you a private message about this.  Normal range for TSH varies in different labs but is generally either between 0.40 and 3.00 or 0.70 and 5.0.  A TSH of 0.10 is considered low (indicating hyperthyroidism) in most labs.  You can raise your TSH by taking supplements along with your meds, especially Regular L-Carnitine.
    • jac14
      jac14 linda187

      Posted

      My TSH is 0.01 nearly zero not 0.10. My is really low. T3 and T4 are in normal range

    • linda187
      linda187 jac14

      Posted

      Mine was that low (even lower at leass than 0.001) for two years until I added supplements which raised it and lowered my antibodies.  On meds my FT3 and FT4 were also normal.
    • jac14
      jac14 linda187

      Posted

      What vitamins were you taking?

      I am taking biotin, b vitamin complex and a multivitamin since hair loss started but has not improved in last 6 weeks.

    • AmyYamy
      AmyYamy jac14

      Posted

      B6 and Zinc deficiency can cause hair loss.   After being hypermetabolic for a while, you've used up a lot of your vitamin stores.  B6 and zinc are not really stored much in the body anyway.   So you really need to supplement to build back up.  I've read about some people with alopecia for years get all their hair back from B6 and zinc.

      But I wouldn't run out and buy these two supplements until after I took thiamine and L-carnitine for a week first.    Well, I wouldn't do that now that I know from experience, lol.    And then get a multivitamin, and don't take just B6 and zinc alone.   If you are seriously deficient, taking B6 can make you hyper, and if that happens you'll use up all your thiamine and end up with more heart symptoms, nerve problems, etc.   Don't be like me.  Go slow.  And take TONs of thiamine.  I mean, at least 200mg at a time.     

       

    • linda187
      linda187 jac14

      Posted

      Most importantly vitamin D.  Many people in Canada are deficient in vitamin D because of our northern climate and vitamin D needs to be optimal for proper thyroid functioning.  What raised my TSH was Regular L-Carnitine up to 3,000 mg daily.  I tried a low dose of Acetyl-L-Carnitine and this really raised my TSH but I caution anyone who uses this to be careful, get frequent labs and adjust the dosage or stop taking it if your TSH rises too fast or too much.  Many people who do not know how sensitive Acetyl-l-Carnitine is in affecting thyroid labs went very very hypo very fast.  And when it works, it should then be discontinued.  There is not the same issue with Regular L-Carnitine.  The medical research on L-Carnitine and thyroid patients was done with Regular L-Carnitine.  This was proven to be very beneficial in hyperthyroid patients because they lose a lot of this amino acid when they are running hyper.  I also take Omega 3, magnesium, curcumin, Co-Q10.  
  • AmyYamy
    AmyYamy jac14

    Posted

    I agree with Linda about L-carnitine.   Eventually, endocrinologists will be prescribing this, hopefully.   It's pricey, so it would be good if insurance covered it.   But it's really important and worth it.  

    Also, thiamine is critical when you are hyperthyroid.   Even just a few days of hypermetabolism will delete thiamine, which leads to the heart symptoms, irritability, fatigue, and if it's left untreated will cause nerve and muscle symptoms.   This is how bad it got for me - burning toes and stabbing muscle pains along with a pounding heart and at one point my heart was skipping beats every thirty seconds.   I took really big doses, about 200mg with each meal, to get my levels up.   There is a study out there on hashimoto's patients about thiamine that you can find and read.  They think there is a problem in thyroid patients with a thiamine transporter, and that explains why such large doses of thiamine are required. 

    Once you get your thiamine levels up, and get the L-carnitine, you should add a B-complex and a multivitamin.   Because basically if you have a thyroid condition, you're either hypermetabolic - and using up all your vitamins, or you are hypometabolic, and not absorbing or metabolizing vitamins.   Thyroid meds are never enough.

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