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Traction or not?

Discussion in 'The Undiagnosed' started by C89, Oct 2, 2011.

  1. C89

    C89 New Member

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    Hi,

    I am 35 years old from the UK. I first noticed my hair loss 8 years ago. I was referred to a dermatologist and attended appointments with her over the space of two years. At the last appointment I was told there was no diagnosis.

    I have had numerous blood tests which came back 'normal'. I had a skin biopsy which came back as 'inconclusive'. I have been prescribed Elocon Solution, Eumovate Cream, and Minoxidil (Rogaine), none of which had any effect and the Minoxidil made my scalp itch severely and flake! I have been tested for Lupus, hormone imbalance, thyroid problems etc. all of which returned normal. I continue to take vitamins etc. recommended for hair loss.

    I was always sure my hair loss was caused by traction because of how I wore my hair - consistently up in a bun. I immediately stopped wearing it that way and have seen no significant deterioration/improvement ever since. However, in reading this forum today I found this thread http://www.heralopecia.com/interact/viewtopic.php?f=40&t=17198 in which the person has exactly the same pattern of hair loss as I do, especially at the sides. I have never seen anyone else with this type of hair loss in any of my online research. She did not mention if the cause could be traction.

    I would be very interested to know if there are others on this forum who have this pattern of hair loss and have any insight into the cause. I have an identical twin sister who looks perfect and no other family member suffers from any hair problems, therefore I have always ruled out any hereditary causes.

    My dermatologist actually said to me that she was seeing more and more people with this pattern of hair loss but could not provide a diagnosis. She also refused to agree with me that the likely cause was traction and never once suggested it to me as a possibility. Now I am very confused as I have always believed this to be my own fault. I had been looking into hair transplantation as a solution (very discouraging!) as I thought it was the only option left. But if there is even the chance there is an underlying cause I would not think of going in that direction.

    What do you think? Was the dermatologist right?

    Thanks for reading all that!

    Kind regards. :)
     
  2. Vlal

    Vlal Guest

    If you look at Ophiasis pattern Alopecia Areata - it is very similar, except normally the balding area becomes completely bald (and smooth) rather than diffuse and it affects the nape/sides as well as the front sides and top.

    [​IMG]

    I would be very wary of opting for a hair transplant given the lack of diagnosis. Even in women who have a diagnosis of Androgenetic Alopecia, they are not always successful.

    If your hair loss (and these other people your derm has been seeing) is down to some kind of autoimmune factor that has not been recognised before... steroids might work. Has your derm ever mentioned that possibility?
     
  3. C89

    C89 New Member

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    Thank you very much for your reply!

    Having a look around at examples of Ophiasis pattern Alopecia Areata, I am not sure it applies to me. My hair loss is much more similar to (although not quite as extensive as) the person in the thread I quoted in that the affected areas are the sides of the head, directly behind the ears, and some in the parting area, but no hair loss at the nape. The areas are not smooth and indeed there is still some minimal hair growth there. There has been no progression and the condition has remained static for 8 years.

    I had only been researching transplantation due to the fact that, in a case of Traction Alopecia, it may be the only option and I felt I owed it to myself to at least look into it. However, after even a small amount of research I can tell that it may be a very bad idea indeed.

    The dermatologist literally said the diagnosis is unknown. The Elocon lotion is a 'potent corticosteroid' and Eumovate cream is a treatment for inflamed skin conditions, both of which I was prescribed to use for the months between dermatology visits to no effect.

    It's the lack of a diagnosis that has become a huge issue as I don't know what to do next. I went to a complementary health practitioner (even though I look at everyone with suspicion!) and I am now taking Florisene (iron supplement) and multivitamins for the hair. The problem is, if it is indeed Traction Alopecia as I have always believed, would that mean my hair is too damaged to grow back? Wouldn't a skin biopsy have picked up on irreparably damaged follicles? Should I see an endocrinologist? I'm going around in circles!!

    Anyway, thank you again for your reply.

    Kind regards. :)
     
  4. Vlal

    Vlal Guest

    Quite possibly - from the limited amount of information I have read about traction alopecia, the prognosis is not very good. However, as you said, one would assume that a biopsy and experienced dermatologist would be able to diagnose traction alopecia - it's not a new hair loss problem after all... it's something that has been around for a long time.

    From: http://www.beIgraviacentre.com/tractionalopecia/

    I think if it is Traction Alopecia, the key to whether you will experience significant recovery, is whether you caught the hair loss early enough that you were then able to stop putting strain on the follicles. Assuming you have not put your hair up for a long time, I would expect to see some re-growth in those areas.

    An endocrinologist would be worth seeing if you have hormone imbalance symptoms - so things like: thyroid problem symptoms, menstrual irregularities, acne, weight problems (obesity/sudden weight gain, difficulty losing weight), excess hair etc.
     
  5. Vlal

    Vlal Guest

    P.S. I would also query whether it is worth getting a second opinion and second biopsy from a different dermatologist.
     
  6. C89

    C89 New Member

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    Hey!

    This is what is so confusing - I was sure a dermatologist would take one look at me and say 'Traction'. Because she actually refused to consider it when I think it must be the most obvious diagnosis has caused many problems for me. Either it is an unknown cause and I am lost in a sea of possible explanations. Or she is wrong and I risk going through all of the tests again only to reach the same non-conclusion.

    In my opinion I did wear my hair the same way long enough to cause traction. I ceased doing so the moment I noticed, but the damage may already have been done. I tried to show the dermatologist pictures of how I used to wear my hair so that she could see for herself the correlation to the pattern of hair loss, but she refused to look. I had wanted her to confirm Traction Alopecia so that I could approach hair transplant clinics, but without any sort of a diagnosis I can't even research it.

    When I read the thread in my first post I was even more confused as I thought my pattern of hair loss was unique and yet more proof of traction, but seeing that this pattern can exist for other reasons has left me with a small amount of doubt.

    You have convinced me that an Endocrinologist would be a waste of time as I have none of those symptoms. As for seeing another dermatologist, she was apparently one of the best. I doubt I would want to see another derm unless they were highly recommended. My GP said she could refer me to a different hospital, but how would I know if it's any better? (my GP even agreed with me on this!).

    I was interested if anybody here has this pattern of hair loss but knows it was not caused by traction. Then I might have a better understanding of other possible causes. For now I'm sticking with traction as it seems the most likely.

    Thank you very much for taking the time to reply to me! :)

    Kind regards.
     
  7. Vlal

    Vlal Guest

    You're welcome.

    On a side note and in response to your reply:
    Sometimes a second opinion can be worthwhile if you are able to find a doctor who is willing to discuss properly with you why they consider it to not be traction alopecia, what the results of your biopsy mean and why they indicate that it is not traction as a cause. Having been, blown off by doctors for other 'medical mystery' health problems I have, I know how hard it can be to find a doctor who is willing to be open to such discussions with a patient (and to looking at pics and other evidence you might want to provide). The problem is, finding a doctor who is good... as you say. I know when I looked for a hair specialist for another member before, there were quite a few listed in the London/South East area. It is possible now under the NHS to be referred to anywhere in the UK. So perhaps if you can find another suitable dermatologist in another area to where you live and who has an actual specialist interest in hair loss, it might be worth the effort and be useful in helping you reach a definitive diagnosis.
     
  8. C89

    C89 New Member

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    Hello again!

    You are absolutely right. I would jump at the chance to discuss this with a derm I thought was actually invested in talking with me and really trying to determine the cause, or at least explain the reasoning. I had visited my GP to explain exactly this frustration and she agreed with me that it would be good to try and clarify all the tests and various theories I had been given. That's why I revisited the derm two years after my last appointment with her and found her very resistant to my questions. It really turned out to be a waste of my time and left me feeling like none of it had been worthwhile as I had learned exactly nothing.

    I am in Scotland and apparently her clinic is the place to go within the NHS. She also has a private practice, so in other circumstances I could have paid a lot of money for her consultation. I thought the clinic was pretty thorough - I had a skin biopsy as a matter of course and more than one derm had a look at me. They took medical photographs and I'm sure prescribed what was appropriate while testing for all the usual physiological causes. And that's what's so frustrating as nobody mentioned traction except me - so do I ignore the weight of medical advice and assume an 'unknown cause', or do I stick with my own fragile instincts and logic and go with traction?!

    Anyway, I think I do need to pursue some alternative opinions and I have all my medical records as I sent for them. If I do find any positive information I will be sure to post it here.

    I know I'm overdoing it, but thanks - I posted on another very large women's hair loss forum and was completely ignored!

    Kind regards. :)
     
  9. Vlal

    Vlal Guest

    I don't think you are overdoing it as it is obviously, and understandably, important to you.

    I do think the crux of it comes down to what difference a traction alopecia diagnosis would make to you - in the sense that, if you accept the "unknown" cause, then presumably your only options are:

    1. To try various things (that anyone with hair loss might try)
    2. To not try the various things and to accept that this is how your hair is going to be from now on (and then any regrowth would be a lovely surprise) and perhaps look at cosmetic options

    From what you said before, the traction alopecia diagnosis would make a difference because you would be able to investigate hair transplant options more thoroughly. In respect of that, one thing I would ask myself is: am I happy with the volume of hair I currently have? The reason I say that is because obviously you would be moving what you already have on your head - so if you are not happy with the density/volume as it is, then perhaps an hair transplant is not the answer anyway?! I know for me, I would not be happy with wearing hair styles even if my balding/thinning areas were denser through an hair transplant. I want the higher volume and density that my pre-hair loss bio hair gave me in order to be able to look the way I want to look. Which then brings me back to being content with pursuing cosmetic options.

    If you would be happy with what you already have on your head, if it were moved around to rectify the areas where you have lost your density, then trying to nail down whether this actually is traction alopecia seems a worthwhile course of action. Just because one specialist - even if she is a highly regarded one in this field - says it is not that, does not mean that it is not. It doesn't mean it is either - they are just human and sometimes I think that they do not understand from the patient perspective that we just want to know what it is that is wrong definitively and to find a course of action that will help or rectify the situation. As such, and with access to the Internet, a lot of patients are now trying to be an advocate for their own health and not to just sit there dumbly accepting diagnosis (or lack of one) without establishing further facts. Some doctors don't seem to like that... I guess they feel we are crossing the boundaries between: you are the patient and I am the doctor. This especially seems to be the case in the situations where it is a bit of a mystery and they don't know the answers.

    I had a Professor of a certain field of medicine rebuff me (refuse to see me) with a load of baloney about "it can't be this and that" regarding a health problem and yet a fellow Professor at another teaching hospital was quite happy to admit me under his team and run tests and actually completely contradicted him!

    Ultimately, you have to make a decision over whether the traction alopecia diagnosis or definite non-traction alopecia diagnosis is that life-changing and important to you.
     
  10. Vlal

    Vlal Guest

    P.S.
    Their loss!! ;) :mrgreen:
     
  11. C89

    C89 New Member

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    Hey!

    I think having a diagnosis would have a huge effect on me. If it is traction then I could properly pursue hair transplant research. I have seen before/after images of women with similar types of hair loss to mine who achieved impressive results, but as I even discussed with my GP, they could be faked. hair transplant is a whole minefield of it's own and I have been told that I would not be considered without a diagnosis.

    I could also have a dialog about how long to wait before deciding it's not going to grow back. I have seen a small amount of improvement, which may tantalizingly promise further growth, or may just be the anomalous recovery of a small amount of hairs. How would I know - I'm not an expert!

    If there could be another reason for my hair loss, then it would depend on what that cause might be and I would then pursue all the recommended courses of action for that diagnosis. I know there aren't a lot of options no matter what the cause, but the more I research the more I find references to an endless list of possible causes for hair loss. For instance, conditions that cause iron overload can result in hair loss, and so can iron deficiency - so you could potentially try something that may in fact be the very thing to avoid!

    Truthfully I have never really been able to function as I am and have no job or friends. Therefore I am always looking for a solution to this but without falling into the trap of scams or unrealistic promises. The derm was particularly insensitive to any modesty I might have, but I have found that to be par for the course with medical professionals. It would be nice to find one with some compassion. Strangely enough the derm seemed to have no concept of the emotional/psychological impact of the very speciality in which she is an 'expert' and it was clear she was not used to being asked questions at all.

    I am glad you have persevered in the past and found someone to listen to you properly. It certainly gives me the impetus to do the same.

    Anyway, this forum has way better advice than that 'other' one! ;)

    Kind regards. :)
     
  12. AsiaB

    AsiaB New Member

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    Hello, I think I have the same problem with yours. During last 2 years the areas over the ears and behind thined dramanticaly. Was diagnosed androgenic alopecia but never saw this pattern at anyone. In my case there was neither the traction. Im pizzeled and depressed without diagnoze and proper treatment. I forgot how is it to wear a pony tail and even to put hairs behind the ears already makes this bald spots visible.
     
  13. C89

    C89 New Member

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    Hey!

    I'm sorry you're experiencing the same problems as I am, I wouldn't wish it on anyone! As for this pattern of hair loss, it seems it's all a big mystery! I'm still looking for answers and probably always will. Without a diagnosis the scope for investigation into a cause/solution seems endless!

    Hugs to you and I wish you all the best. There are people out there that know what you're going through.

    Kind regards. :D
     

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