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Hair loss

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lisa23155
lisa23155

Hi does anyone have any experience of hair loss with Hemachromatosis? This is the only noticeable symptom I have and it's now becoming alarming. My sat is 89% and I have to use a chelation drug as they couldn't get any blood from me! Long story..has anyone had this and knows if it grows back when iron levels are back to normal?

 

1 like, 14 replies

14 Replies

  • megan36105
    megan36105 lisa23155

    Posted

    I haven't experienced this, no, but I was lucky and my iron overload was caught four years ago when I was 21 and my ferritin level was only about 600.

    From what I've read - and I just did some brief research after seeing this question, there are certain hair products that you can use in order to help with regrowth of your hair, but from what I can tell, it's reversable.

    What are you levels at right now? I would speak to your specialist about your hair loss concerns and ask if they know of any treatment you can use besides having phlebotomies/venesections. I'm assuming that once you're at a ferritin level of <50, your hair will start to come back. your="" hair="" will="" start="" to="" come="">

    • megan36105
      megan36105

      Posted

      Although I guess in your case I should've said *treatment you can use besides taking a chelatin drug.

      Speaking of which, do you happen to know if hair loss is a side-effect of the drug that you're taking?

  • lisa23155
    lisa23155

    Posted

    Thanks Megan...I have seen a specialist about my hair who said there is nothing wrong with my hair or scalp. The Dr in charge of the Haemachromatosis has looked into it but there is little discussin about it available, that's why I asked the question, to see if anyone else had recovered theirs, or not, once the iron was down. I was at 870 at its highest and now is 450. The drug lists hair loss among the other several hundred possible side effects, none of which I have experienced so far, but I have been losing my hair for 12months, long before I started the drug. 

     

    • megan36105
      megan36105 lisa23155

      Posted

      Since it's something that definitely bothers you and you're a bit worried about I would definitely press your doctor to do more research on your behalf -- you could also try seeing if there are any other specialists in your area that would be willing to discuss haemochromatosis and hair loss with you.

      Other than that I'm not sure what else you could do besides wait until your iron level is <50 and seeing if that makes a difference.

      how long have you been taking the chelatin for? i think with phlebotomies it took me... gosh, i'm not even sure. it was about a year maybe before my iron levels were down to what they should be.

      just for your own sake if you can, i would invest in really good hair products and try to do the minimal amount of damage possible to it in the meantime - so lessen the blowdrying, curling, straightening, dying, etc. and="" seeing="" if="" that="" makes="" a="" difference.="" how="" long="" have="" you="" been="" taking="" the="" chelatin="" for?="" i="" think="" with="" phlebotomies="" it="" took="" me...="" gosh,="" i'm="" not="" even="" sure.="" it="" was="" about="" a="" year="" maybe="" before="" my="" iron="" levels="" were="" down="" to="" what="" they="" should="" be.="" just="" for="" your="" own="" sake="" if="" you="" can,="" i="" would="" invest="" in="" really="" good="" hair="" products="" and="" try="" to="" do="" the="" minimal="" amount="" of="" damage="" possible="" to="" it="" in="" the="" meantime="" -="" so="" lessen="" the="" blowdrying,="" curling,="" straightening,="" dying,="">

      how long have you been taking the chelatin for? i think with phlebotomies it took me... gosh, i'm not even sure. it was about a year maybe before my iron levels were down to what they should be.

      just for your own sake if you can, i would invest in really good hair products and try to do the minimal amount of damage possible to it in the meantime - so lessen the blowdrying, curling, straightening, dying, etc.>

  • sheryl37154
    sheryl37154 lisa23155

    Posted

    Hair loss is listed as a complication of HH.  I noticed it years before I was diagnosed.  I was prescribed Androcur which helped - it is an anti-androgen and deals with excess dihydrotestosterone (dht - or feral testosterone) which causes hair loss.  That can be tested via a blood test.  However, menopause or low estrogen can cause it and HH can reduce estrogen (and maybe increase dht - who knows?).  Surgery, and some prescription drugs can cause it.

    I researched answers extensively, and found that an anti-dandruff treatment called Nizoral 2% was recommended as it contains a similar or same medication that is in Rogaine but is a lot cheaper.  I did not suffer from dandruff.  You can use a creme shampoo cleanser if you have product in your hair, then Nizoral 2%, leave in for 5 minutes, then rinse.  Do not use a conditioner as it will make the treatment ineffective.  I also do a quick cold water rinse on the thinnest hair (i.e. top of head and above forehead for me) to excite the blood supply to my scalp, and recently discovered a splash of white vinegar on wet hair helps smooth the hair follicles.  Pierce a hole in the top of the plastic bottle of (cheap) white vinegar - or dark for dark hair, and sprinkle on.  I also apply a leave-in body treatment to hair without applying to scalp.

    It works - new hair growth is always obvious.  On the dryest ends of my hair (otherwise I have oily hair problem) I apply a pre-treatment of coconut oil for about 20 mins or more, before I wash.  Even one application of Nizoral will wash out the coconut oil.

    I have been de-ironed for years though still absorbing, yet I am still losing lots of hair.  I have to comb my hair outside as it rains down on to the ground.  My vac cleaner still fills up with hair and my pillow gets covered in hair.  But with this treatment, as least I am regrowing new hair just (or almost) as fast.

    I hope this helps you too.

     

    • megan36105
      megan36105 sheryl37154

      Posted

      I'm the same way actually - but it's not from HH, it's because my hair is naturally curly so it's drier than the average persons, and I have a lot of hair so I shed as bad as my dog.

      Let's be honest - the link brush isn't even for him (his name is Winston), it's for me.

  • GillianA
    GillianA lisa23155

    Posted

    If your thyroid function hasn’t been checked, it might be worth asking your doctor about it?  I’m suggesting this because if hair starts to get thin when both the scalp and the hair look normal and healthy, two common reasons are low iron and over- or under-active thyroid function.  Low iron wouldn’t apply in somebody who has iron overload, but low or high thyroid function are possibilities.  Sometimes thinning hair is the only thing people notice when their thyroid starts misbehaving, and effective treatment of the thyroid problem also corrects the hair thinning problem:

    http://www.medic8.com/healthguide/hair-loss/female-hair-loss/thyroid-conditions.html

    Thyroid Conditions - Female Hair Loss Guide

    There are several causes of hair loss but one which may not be so obvious is that of thyroid problems. We tend to assume that hair loss is inherited or as a side effect of medication or cancer treatment.

    It can also be symptomatic of an underlying medical condition which then requires further investigation. If you are fit and healthy with a full head of hair but notice that it has started to thin then there is usually a reason for this.

    And this reason may be a problem with your thyroid gland. . . . .

  • lisa23155
    lisa23155

    Posted

    Well thank you everyone for very extensive replies, it's comforting to know that others are in the same boat! From what you have said I think I have already covered all of those bases but there is value in knowing that too. I am just particularly interested to know if anyone's hair has grown back after de ironing? There doesn't seem to be any stats on this. I have contacted the US sites too to see if they have anything, I'll put it up here if anything interesting/new comes back. Thanks again, I really appreciate it.
  • mary52003
    mary52003 lisa23155

    Posted

    Hi Lisa, I recently had blood tests & iron levels were 54% & I am due to get results of gene test tomorrow.  I have been suffering with hair loss for the past couple of years and went to several consultants but they felt it was due to menopause.  I am hoping that if I have HH, the hair loss could be reversed.  I am very interested to know how you get on.
    • lisa23155
      lisa23155 mary52003

      Posted

      Hi Mary, not much to update except that I asked my specialist to look into it too and he found that it may carry on thinning but is likely to improve..all very non committal! So my hair is still falling out, my levels are now at 450 ish, but I have thought the last couple of washes it didn't seem to lose as much. The drug I am on also has hair loss as a side effect so it's difficult to know now what is causing it. A friend gave me some rosemary oil to put in the shampoo if you are into alternative remedies. I use the regaine but not sure how much that affects anything. I would say that I try not to worry about it, We are still awesome with or without hair! Good luck x
    • sheryl37154
      sheryl37154 mary52003

      Posted

      For some people it does, for others it does not reverse.  It may depend on how much iron you absorbed into your organs before you were diagnosed.

      But see how I successfully dealt with the problem in an earlier post.  It is working for me.  While I still lose a lot of hair, I am also now growing a lot of new hair.  The new short hairs are noticeable and stick up in the areas where I lose it and my hair has thickened up (I have fine hair but now lots more of it).

      I hope it works for you.  It is best to take action now so that your hair thinning does not go beyond return.

       

    • mary52003
      mary52003 sheryl37154

      Posted

      Thank you. Just after reading your post.  I will try shampoo.  When do you apply vinegar?  Is your hair wet?  I am not sure what you mean by smooth the hair follicles.  I really appreciate all the advice.
    • sheryl37154
      sheryl37154 mary52003

      Posted

      I sprinkle the vinegar over hair immediately after running some cold water on my head.  Then I squeeze most running water out of my hair and wrap it in a towel.  Cold water can also smooth hair follicles.  When you are not using a hair conditioner, the coating of each hair is roughed up after shampooing.  The cold water and/or vinegar can smooth the hair and make it shiny.  Lemon juice, camomile tea is said to do the same but I don't need anything fiddly to further complicate my life!  And I am not too sure about getting it on my scalp as it is important to let the Nizoral do its job.

      Perhaps 'follicles' is the wrong word - is that the hole out of which the hair grows??  Well, I mean the outside coating of the hair shaft which under a microscope generally looks like split ends all the way along.

      I do have shoulder length hair so I can avoid putting it on my scalp - I don't know how people with short hair will go - maybe they don't need the vinegar.

  • mary52003
    mary52003 lisa23155

    Posted

    Thank you Lisa.  I did not get confirmation yet, apparently it will be several weeks before the gene tests results will be back.  I used rogaine in the past but it did not seem to help.  My Dr says there is nothing to worry about but does not offer a solution.  I may try rogaine again.  Thank you so much.
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