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Confused....

Discussion in 'PCOS Community' started by RubyRoo, Jan 31, 2010.

  1. RubyRoo

    RubyRoo Guest

    My hairloss started quite suddenly a few months ago and initially my Dr thought TE due to psychological and emotional trauma. I have got PCOS, at least 2 years ago I was told I had it after a year with no period, hormone tests and an ultrasound. I've always been quite hairy all over, fair really and very few coarse, no facial hair. The thing is since then I have had perfect periods for the last year and a half, can't fault them and can time them to the day. I recently had back new hormone results and they have come back normal too.
    I had worried that my PCOS was maybe at fault, am I right in thinking it would be higher testosterone that causes hair loss in women? My Doctor is useless and getting in to see him, or anyone else takes a good couple of weeks! I also get the impression I know alot more than he does!
    Also does PCOS related hair loss come on suddenly like this?
     
  2. Vlal

    Vlal Guest

    How much hair loss have you had? Is it rapid shedding? Thinning? Balding?

    Theoretically with PCOS the hair loss follows the male/female pattern baldness (Androgenic Alopecia/Androgenetic Alopecia), so you would see a reasonable amount of shedding, with hair growing back miniaturised. This means that eventually there are hair follicles that don't grow hair anymore because the follicle has died. Just like how men go bald really, except the female pattern is very slightly different. Whilst the shedding can be reasonably high, because hair is still growing back, the actual visibility of the hair loss tends to be less than with TE. It takes some time for the hairs to miniaturise so initially hair just becomes thinner and in the later stages balding is more apparent and in severe cases women experience can experience near-complete baldness of certain areas of their scalp.

    With TE, the loss tends to be much more diffuse and can affect the whole head. Androgenetic Alopecia in women affects the vertex (top of the head) and the crown. TE tends to be rapid onset and the shed is high. It can be consistantly high for months. You might notice overall loss of density. You can experience bald or balding areas from the TE shedding that are apparent much quicker than you would see in Androgenetic Alopecia.

    Regarding PCOS - have you been tested for Insulin Resistance (a fasting glucose blood test)? Has your progesterone level been checked? Assuming these are ok... as you said that your hormone levels have come back as normal and the fact your periods are regular. Do you have any other symptoms other than hair loss and being quite hair on the body? For example, obesity, acne? It does sound as if your hair loss is more likely related to TE than to hormonal issues.

    How is your overall health? Have you had a thyroid panel done to check your thyroid is working optimally and also it is worth having a blood test to check your ferritin (iron levels).

    HTH
     
  3. RubyRoo

    RubyRoo Guest

    Thank you so much for replying!
    Yeah I've had all the blood work done and they've all come back normal. I was thinking about insulin resistance, I had the fasting glucose done, and it came back fine, none the less I've opted to cut down on sugar, it's not good for you anyway :) I've just made an appointment with a good Dr at my surgery to go through my results and discuss PCOS, whether its possible for them to have got it wrong I don't know. I sometimes get bad skin, rarely though a little on my back when I was a teenager. I'm not overweight if anything underweight due to stress (which can't help this situation) and I have no issues with gaining/ losing weight at all.

    My hair loss seems to be all over, I've been quite anal about checking, I will say that the right side of my head....hole side, not temples etc, is worse than the other but I wonder if I had less hair on that side in the first place. I lose a lot for me though I'm concerned it's not the 200+ a day that a lot of people with TE have but it's enough to notice in the last 2 months my overall density is a lot less, enough for my very honest best friend to say she can see it (which I love her for) I am beginning to notice the density on top thinning more but I guess thats just a constant diffuse thing, It's going all over and becoming more apparent as it goes on. I do lose new hair, hair that's about 4 inches long with a tapered end, would I be right in thinking TE would prematurely shut down any anagen hair, not just those that have been growing for a long time? Or is that wishful thinking?

    So many questions I know. :crazy:
     
  4. Vlal

    Vlal Guest

    From what you say, it does sound as if PCOS would be doubtful for you, which is good news, but doesn't really help in the hair loss stakes. It is also good that you are going to get an explanation/review of your results from your doctor.

    If it's any consolation, I was told that I had PCOS (and I actually have the symptoms) but now that diagnosis has all been thrown into doubt by other developments and none of my labwork seems to support the diagnosis either! I do not have high Testosterone or Insulin resistance and my LH/FSH ratio is the opposite of that in women with PCOS! I did have cysts on my ovaries, but then so can health women... my hair loss seems to be TE mixed with Androgenetic Alopecia as I have a definite vertex/crown pattern, but when I am shedding heavily I also lose on the sides. I know what you mean about losing on one side more than the other. My left side is my worst side... it is definitely a lot more hair loss on that side and also I started to lose hair from the temple there... and not on the other side! Weirdly.

    Don't worry so much about numbers. If your are losing more than you normally were and it is not growing back at the usual rate 'for you' then this will cause hair loss or thinning. The problem is the disruption of the hair growth cycle. For me, I have very long periods of shedding, but the shedding is not like 300 a day at all. I don't count but would estimate I lose around 100-150 a day when I am in a shed... the problem for me is that more hair is falling out than is being replaced. I know new hair is growing because I can see it, but some of that (short hairs) falls out too. The disappointing thing for me is that I can see miniaturised hairs. Have you noticed that your hair texture has changed at all? I first noticed miniaturisation (didn't know it was that at the time) when I said to my mum and hair stylist that my hair strands seemed to have become like a pick and mix! Basically they went from all being the same thickness/colour to different thicknesses and the thinner they were, the lighter the hair colour.

    Theoretically the hair lost through TE is in the telogen stage. You might want to do a google search to see if it can affect anagen by putting it into a premature telogen state.

    There is also a subset of Alopecia Areata that is diffuse. This might be worth looking into.

    I do wonder with myself what is going on because on the sides where I lose hair, I get overall thinning, but also like circular shapes where I am losing more hair - it's hard to describe. When I shaved my head, you could actually see them clearly. I have given up wondering why I lose my hair and just learnt to accept it and tried to lessen the stress in my life as stress does not help us at all in terms of its negative impact on our bodies is bad for our overall health. I agree reviewing diet is good - cutting sugar back and perhaps trying low-GI eating, but making sure you get plenty of calories if you struggle to stay maintain a good weight for your height.

    Let me know how you get on with the doctor!
     
  5. RubyRoo

    RubyRoo Guest

    I have noticed hair growth and as for differing hair strands, It seems my hair has always been that way, fine - medium with the odd coarse hair. I'm on the look out for miniaturising hairs at the moment...I'm not too sure how I can tell yet, my hair is so many different colours and changes all the time. My hairdresser and I always used to talk about how dark/ or light it is, blonde, red, and brown. It really is random all over, straight and curly! Which doesn't help. I see some girls with one colour, straight all over etc and def know I could pick out a smaller hair.

    If all your testosterone levels etc are normal can you presume that your hair loss is not to do with PCOS?

    I guess it's just a waiting game at the moment, there isn't a lot I can do till I know more. I do know I'm getting a bit more used to it, it just makes me feel blue! But then everyone on this site knows about that! will let you know how it goes! Thank you so much for your help!
     
  6. Vlal

    Vlal Guest

    You're welcome.

    I am presuming at the moment that my hair loss is not related to PCOS until they can prove to me that I actually have PCOS!

    I have that kind of hair that is straight, so I can tell pretty easily. The weird thing was that when the hair gets to a certain point, it actually started to turn wavy. By this point it is so fine it is almost non existant and it is translucent looking. It definitely doesn't look like anything that should belong on my head!

    Even if you do not have PCOS there is the possibility of having Androgenetic Alopecia (female pattern baldness):

    Taken from the American Hair Loss Association.
     
  7. RubyRoo

    RubyRoo Guest

    Yeah I had heard about DHT, believe me I have read everything I can get my hands on...only to confuse my self further! With regard to the DHT route, and the last thing I ask too :) , what are your thoughts on saw palmetto? Have you used it at all? I've read all sorts about it when I've been on PCOS sites.
     
  8. Vlal

    Vlal Guest

    Yes, I have used it. I did not have any side effects. I used the tincture from Bioforce. I can't say it particularly changed things for me, but I do not see the harm in trying it if you feel so inclined.

    One thing I did find helpful was changing my hair washing routine. I had always been using shampoo and conditioner. Usually salon ones and at one point I used Nioxin products for over a year, with no success! However, I read about not using shampoo and instead 'washing' my hair with baking soda. Actually it is more a case of cleansing your scalp with it. Then following with a rinse of apple cider vinegar mixed with warm water. If you do a search on here you will probably find that I have typed detailed instructions on how to do this method if you are interested. Strangely when I followed this routine and abandoned all hair products for several months, my hair loss slowed down gradually and I started to regrow and retain more hair. The only problem was that at the same time, I also had left my job so I am not sure if it was the Baking Soda/ACV method or the lessening of stress that helped. However, I do think it is worth trying as it is VERY cheap.

    Nioxin is also worth a try - some people do find it helps, although it is quite expensive. You might want to google some reviews if you haven't already read about it.

    Nizoral did help me. I tend to get periods of a very itchy scalp and using this once a week really helped to lessen that. It is available from Boots and costs around £6.

    I think this hair loss thing is VERY confusing. I know what you mean about the reading and research! I gave up after a while. I realised that (not to be depressing) there are not that many options unless you want to try minoxidil (which I didn't), so aside from doctors finding out exactly why you have it and then realising there is some massive underlying health issue that they are able to fix, then I couldn't see that I could change the situation much. Anything I tried was with an open mind, but also being realistic that it might or might not work.
     
  9. RubyRoo

    RubyRoo Guest

    Just to let you know how all went.
    Had a cancellation for the Dermatologist so got in nice and early (before my Drs ap). She's convinced it's TE due to everything and also the state of my finger nails, I'm not entirely convinced, so she's referred me to see a nail and hair specialist.

    Went to see the doctor about all my results and PCOS etc. He says he's not entirely convinced I have PCOS, I don't 'fit' the mould as it were and so he has referred me to a Gynocologist. Haha Gloucester hospital are going to be sick of me!

    We discussed my hairloss a bit, again mainly TE, I just don't want to presume it to be TE if it isn't.

    Not sure what all this is going to achieve, but hey, it's keeping me busy.

    Hope all's going well with you?
     
  10. Vlal

    Vlal Guest

    Oh I think it is good that they are referring you to all these people and also not just diagnosing with PCOS as a blanket kind of umbrella diagnosis (GPs seem fond to do that!). It is worth ruling everything out. If it turns out to be TE, then you are in good company here. Keep me updated.

    I am still waiting to hear back from my endo who is waiting for a second opinion from a hospital in London. I got a hold of copies of my test results and have some abnormalities, which looks promising (I need something to be appearing wrong so they can fix it!).
     

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