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CFS hair loss

Posted , 5 users are following.

david59662
david59662

Hi,

So in relation to my CFS diagnosis, 14 months in, i noticed this back in September 2014 that my hair was thinning on the sides, now i am noticing a bald patch appearing on top. This in my mind is clearly related to my CFS. I just wanted to know if others with CFS have this, how common a symptom is this in CFS and possibilities as to what could be causing it ?

Thanks

1 like, 14 replies

14 Replies

  • tina58520
    tina58520 david59662

    Posted

    Hi David,

    Goodness me, I am relating to so many key points to the rest of you guys.  This is good as it assures me I am not on my own.  I was diagnosed with underacitve thyroid after the birth of my daughter 18 years ago.  However, I have heard that this also links in with CFS/ME.  It would be a good idea to get your GP to check this out.  It is more common in women, but I do know of men who also have an under active thyroid.

    Good luck

    Tinax

    • david59662
      david59662 tina58520

      Posted

      Hi Tina,

      Well my GP tested my thyroid and it was normal BUT i have since discovered these tests might not be accurate in some thyroid disorders.

      Hashimotos for instance. My GP won't do any further testing.

  • dragontest
    dragontest david59662

    Posted

    Hi

    I dont think CFS is the main factor in your hair loss, check the meds your on as quite a lot of them can give you hair loss as a side effect... plus stress can make your hair thin/drop out.

    I have had ME for close on 20 years and not had hairloss with ME but some of the meds I take can give you hairloss/thinning.

     

    • david59662
      david59662 dragontest

      Posted

      On no meds, did start supplementing with 10mg pregnenolone and 25mg DHEA a few weeks ago. I have low DHEA from testing. I have read it COULD be the supplements. Certainly my hair loss i'm positive is not natural. My health was great upuntil CFS and since then a whole host of symptoms.
  • GeorgiaS
    GeorgiaS david59662

    Posted

    Yes I have and it was related to mercury poisoning from my fillings. I had to go to a mercury free dentist in Harley St to get them out. My hair isn't as thick as it used to be but it has stopped falling out, and after I'd shaved it it grew back nicely. I still have ME so the fillings were the problem.
    • david59662
      david59662 GeorgiaS

      Posted

      Hi Georgia, no fillings for me so can't be that. It's either the CFS process causing it OR the fact the illness has been extremely stressfuk for me to deal with emotionally. I'm hopeful it might work itself out over the months.
  • sylvia17461
    sylvia17461 david59662

    Posted

    I will probably be shot down in flames  for even suggesting this but I would find a GP or doctor who will prescribe thyroid hormone ( thyroxine in uk ) for a trial . Starting you on a very low dose and upping it over the next few months ! I was prescribed 25 mg to start and upped over 3 months . Amazing !!! My doctor ( who I had to see privately because none of the gp s or endocrinologists would go against blood test results) told me before blood tests for thyroid disease they diagnosed by symptoms.  He said he could not understand why after all my years of suffering with symptoms that pointed to  hypothyroidism no doctor would prescribe thyroxine he went on to say it is very inexpensive and no great cost to the nhs and no danger to health if started on a very low dose . He kept an eye on me over the months and upped the dose gradually to be on the safe side . I had previously been " diagnosed" with CFS and told to live with it but I knew within my self it was not   ! I don't want to annoy or upset sufferers of ME/CFS I know it is a cruel dibillitating illness but felt I had to tell my experience I have mentioned this before on this site but there is always new people struggling with their illness looking for answers , as I was for years . Hopefully this can prompt some of you to at least discuss it with your own doctor forewarned is  for armed . Good luck good health .
    • georgeGG
      georgeGG sylvia17461

      Posted

      Silvia, thank you. My wife is on a low static dose. It has made only a modest difference. She still is easily tired, very poor immune system and chrnically cold legs. May we have a more detailed description of the effects of the gradually increasing dose, please. 
    • georgeGG
      georgeGG

      Posted

      On further thought Silvia, should this go to a new Discussion by headed you?
  • sylvia17461
    sylvia17461 david59662

    Posted

    George I became ill in 1995 after a flu type virus it left me eventually .5 months later I was completely felled with so many awful things happening in my body. , foggy brain , lack of concentration, dizziness, pins and needles and numbness in my legs and arms , pain and discomfort in muscles and joints, inner tremors , thudding heart , palpitations, discomfort in jaw and ear, difficulty swallowing dry skin and hair etc and of course awful fatigue. A long story but cutting it short all blood tests were normal and tho I had symptoms of thyroid disease no doctor would treat me because of normal results ! Eventually I found a doctor who said he would prescribe me thyroxine as I had all the symptoms . I started on 25mgs that first month I didn't feel any change the following month it was upped to 50 mgs and the next month 100 mg s and the relief when the brain fog lifted and my head cleared the numbness went and my swallowing improved, , the lack of concentration cleared the pain and discomfort in joints went  the tremors were much less and I had more energy I felt so much better and life wasn't the nightmare it had been ! I am still not 100% well after all these years and I was " diagnosed" with CFS and told to read up on it and just live with it which I did. It is only recently that I had an ultrasound on my thyroid and specific tests which proved I had hashimotos disease which is an autoimmune illness. There is only treatment for it no cure and the treatment is thyroxine, this is why I became so much better!  It was explained to me The difficulty is getting the right dose of T4 and T3 . So George that is my sorry little tale I hope it helps in some way . If you go to " I am hashimotos s a letter" is this you or your wife's illness ? There are many many comments from people suffering who had been misdiagnosed ! Good luck hope your health improves .
    • georgeGG
      georgeGG sylvia17461

      Posted

      Silvia, thank you very much. This could be a possibility. We have a listening GP so my wife can take an idea to her and expect to get a sensible and considered response.
    • nwengel
      nwengel sylvia17461

      Posted

      Hi Sylvia, I apologize but this isn't relevant to the thread; I stumbled upon it. But you are the only person I've come across that has symptoms practically identical to mine. I am over a year undiagnosed and was wondering if I could talk with you offline!
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