Dismiss Notice
Welcome! Please read this announcement regarding the new Forums: Click Here"

CHRONIC TE OR Androgenetic Alopecia? so confused

Discussion in 'Women's General Hair Loss Discussions' started by beelum, Apr 11, 2015.

  1. beelum

    beelum Member

    Joined:
    Feb 16, 2015
    Messages:
    73
    Likes Received:
    0
    Dislikes Received:
    0
    hi ladies!

    posted earlier regarding on and off shedding on Spironolactone (general hair loss question) and finasteride. just to give you a little history, always had a full head of hair..wavy and very thick..no Androgenetic Alopecia in my family, father started losing his at 50 so not awful. around 8 years ago (at 23) started noticing more than usual shedding (im naturally not a big shedder), acne around my jawline and hair on my chin...sought out an obgyn at a friend's recommendation. blood work came back normal but she diagnosed me with pcos based on ultrasound. prescribed diane 35 and within a few weeks my hair loss totally stopped and acne went away although hair on the chin stayed which is not a big problem since i wax it every two weeks. that was my regimen basically for the next 6 years with no loss experienced during this time. my hair loss had only lasted 4-5 months before starting diane 35 so my overall density was not affected at all.

    decided to get pregnant and got off diane 35. conceived right away, hair was amazing during pregnancy, had a baby via c-section and as expected post partum hair loss began two months after birth/surgery. acne came back full force a month later. i decided to go back on diane 35 thinking the TE would last another couple of months and i should just ride it out and in the meantime the diane 35 would start working as it always had. without fail.

    boy was i in for a true awakening! lol...hair loss did not subside..my hair loss was never severe..never lost more than 80..and 80 was on bad days..my average was 50-60 most of the time. i also had to start washing my hair everyday in order to keep it looking healthy and full. even 8 months into the loss no one but me could really tell i was losing hair. i was really confused at this time because a year into the loss i could not understand what was wrong. got everything checked out..iron, ferratin, thyroid, hormones, vitamin levels. everything except vitamin d came back totally normal. my vitamin d was low. 13. so i was put on 50,000ius a week. for three months. at the same time a year into the loss. i got a scalp biopsy done right on my crown where i could see the most thinning and it came back NEGATIVE for Androgenetic Alopecia...my vellus to terminal hair ratio was 1:16..no miniaturization seen as well or inflammation. basically my scalp biopsy report was totally clean. by this time i had obvious thinning, my part has been getting less dense and runs to the back of my head. i have to play around with my hair to make it look good. overall density probably reduced by 50%. three months after the biopsy shedding seemed to go down..i was losing more in the 20s range than my normal 50-60...sometimes 30s...this lasted a good three months..thought watever the heck was causing my hair loss was subsiding but a trip to another dermatologist and she tells me i have Androgenetic Alopecia even though i showed her my biopsy report...starts me on 5% rogaine ...i have a crazy shed...130-160 hairs a day that lasted a good month...i got off it within a month since i am STILL NOT SURE what is causing the hair loss. been tested for auto immune conditions and those have also come back negative. also i do see new regrowth everywhere...really small hair to 1inch long ones..they are not less thick than the longer hair i have. dr redmond also didnt really tell me anything else except Androgenetic Alopecia.

    my questions are:

    -are scalp biopsies to be trusted with Androgenetic Alopecia diagnoses? if mine was negative could this just be chronic TE?
    -im on Spironolactone and finasteride and have seen some reduced shedding that waxes and wanes but not sure if that is just the rogaine shed subsiding?
    - diane 35 worked on me like a true god send. why is it not working now if i do have Androgenetic Alopecia?
    - can chronic TE mimic Androgenetic Alopecia?

    i know this is really long but im really desperate, confused and teetering on hopelessness. my hair has gone from beautiful to something im very insecure about. and all this happened within 2 years. i appreciate your thoughts on this! thank you!
     
  2. Topcat

    Topcat Established Member

    Joined:
    Apr 4, 2015
    Messages:
    91
    Likes Received:
    0
    Dislikes Received:
    0
    Hi

    Has your hair shedding been constant? I have shed for five years but in and off, i havent had a diagnosis but my hairs do have a bulb and I do have re-growth of carying lengths, do you? I am sure I have chrinic TE.

    One thing that is interesting is I notice lots of women say all bloods were normal except vitamin D! I also suffer from very low vit D which my doctor said can cause hair loss.
     
  3. beelum

    beelum Member

    Joined:
    Feb 16, 2015
    Messages:
    73
    Likes Received:
    0
    Dislikes Received:
    0
    Yes the shedding has been constant, up and down but never drastically high (except when I had the rogaine shed). I completed my course of vitamin d and it went up to 51 from 13. It was kind of around that time that I saw decreased shedding as far as zero hair coming out when brushing sometimes. This only lasted three months though and it still never was as low as pre pregnancy levels. Back then hardly shed at all ever. I didn't go on a maintenance plan with my vitamin d and now it's gone down to 22. Did you get tested for Androgenetic Alopecia? And did you take anything for vitamin d? If yes, did it help? Yes I do have regrowth of different lengths but obviously it's not enough to cover what I'm losing.
     
  4. Topcat

    Topcat Established Member

    Joined:
    Apr 4, 2015
    Messages:
    91
    Likes Received:
    0
    Dislikes Received:
    0

    Hiya

    I really think that Vitamin D has a big part of hair shedding !! My first hair shed which was huge was after a very upsetting break up in 2010 (shed started 6 months later stopped after 3, maybe 4 months) but it triggered something possibly chronic TE. I had no loss at all in 2013 and by June last year my hair was well and truly looking fuller but then it shed again :(

    I am awaiting blood tests but havent been tested for Androgenetic Alopecia,I appear to have all over thinning hair worse at the front side but I have put this down to hair being tied back and mainly using straighteners at the front (which I have not used for a month now). I have hair re-growth all over at different lengths but this does fall out at times also and the re-growth doesnt catch up with the loss, no bald patches (touch wood, other than where I had a small op years ago and the hair never grew back its just a bit more noticeable now due to hair thinning)

    Now Vitamin D, your level of 51 is still low it should ideally be up in the 80's I have been diagnosed with it 3 times now in the last few years, each time it is down in the low 20's I know when I have it as I get bad rib pain, at one point all my joints ached and I was tested for lots of things, it is only this time I have wondered if there is a connection, my GP thinks there is. He prescribes me Adcal D3 1500mg 400 I.U twice a day for two months, you cant stay on it long term as the calcium isnt good for you. When I finish the course my Vit D is back up in the 80's. I have no idea why it goes back down, I walk my dogs every day so I am out in the sunshine quite a lot during the summer!

    My nails have been suffering too they were splitting and fraying, so I have now been taking the Adcal for coming up to four weeks, together with a dose Vitamin B complex and in the last week I can see a massive difference in my nails, they seem stronger and this morning (frantically looking around to touch wood)!! I combed my hair over the bath to see if there were a load of hairs as I didnt get to wash it yesterday and usually that means a bigger lose but I was amazed that only 6 hairs came out !! There was 220 that I counted two days previously but obviously I know it may just be fluctuating as it has done that before with a big shed.

    I went to the hairdressers today and having it coloured today has certainly made a difference to the way my scalp looks as the grey roots are now brown and so you can actually see more of the re-growth.

    The other thing I am doing is drinking more water, I dont know about you but I never drank enough sometimes less than a litre a day so I am making an effort to drink two litres a day (my hairdresser said that hair needs to be hydrated and I never was) skin feels better for it and so do I.

    I would get proper treatment for your Vit D deficiency and when you have finished the course have a follow up blood test if it is still low stay on the treatment, :)
     
  5. beelum

    beelum Member

    Joined:
    Feb 16, 2015
    Messages:
    73
    Likes Received:
    0
    Dislikes Received:
    0
    Thank you so much for getting back to me. I will definitely get treated for vitamin d, my level was 22 a month ago so I'm sure it's even lower now. My hair even though thick was always less dense in the front and that's where the hair loss shows most. I know ppl say with Androgenetic Alopecia you have more thinning in the front but I don't know if my thinning is obvious there because it was naturally less dense to begin with. I again shed significantly less today compared to yesterday so all this is so frustrating.

    - - - Updated - - -

    I also have hand joint pain and feet pain in the morning. I thought this is either lupus or Ra with hair loss. Got extensively checked out by three rheumatologists including x rays, expensive blood tests and ultrasound and not even close to an auto immune condition apparently. Could this be related to vitamin d? My pain is worse in the morning and is virtually non existent an hour later
     
  6. Eunmi

    Eunmi Established Member

    Joined:
    Dec 9, 2014
    Messages:
    158
    Likes Received:
    0
    Dislikes Received:
    0
    Joint and muscle pain is sometimes a hallmark sign of vitamin d deficiency. Although other testing should be done to rule out other things.
    I failed to notice my vitamin d deficiency for years until my hair loss and lack of hair growth started. After starting vitamin d supplementation, my leg cramps and joint pain stopped completely. At one point I couldn't stretch my legs at all without getting horrible leg cramps. I even used to get them without even doing anything, really. As for my hair, I can't really say much about it, it still sheds, but not as horribly as it had been for the last couple of years.
    But yes, I would definitely up my vitamin d to see if it helps with the joint pain. Omega 3's are also known for helping joint pain as well.
     
  7. Topcat

    Topcat Established Member

    Joined:
    Apr 4, 2015
    Messages:
    91
    Likes Received:
    0
    Dislikes Received:
    0
    My vitamin D deficiency was picked up after i went to the doctor complainng of aches and pains, fingers, wrists, elbows, my ribs were so bad any movement at night would wake me it was like a nightmare every night because once I Was up and about it would wear off, i thought i was going mad my other half said i was groaning all night with movement! I thought I had fibromyalgia but after treatment of vitamin D it all went apart from the rib pain that always comes back when Vit D drops but not as bad as I get straight to the doctor now.

    I bought omega 3 but it says can upset stomach and cause fush breathe/taste (yuk) so i havent had it been eating loads of fattening walnuts instead Lol.
     
  8. Eunmi

    Eunmi Established Member

    Joined:
    Dec 9, 2014
    Messages:
    158
    Likes Received:
    0
    Dislikes Received:
    0
    Lol, there's one way of doing it.
    I have no choice to take omega 3's at the moment. My doctor wasn't impressed with my cholesterol. I always get super tired and my insomnia blows up when I know I'm not getting enough vitamin d. Which has been horrible to bounce back from after a week.
    I still have a way to go with getting my levels up though. Started at 16.8 and my Dr only told me to take 2000 iu. Have to buy my own d3 and supplement with 10 5000 iu pills for a few more weeks.
     
  9. beelum

    beelum Member

    Joined:
    Feb 16, 2015
    Messages:
    73
    Likes Received:
    0
    Dislikes Received:
    0
    attached some pics..the second two are how my hair looks AFTER i brush it once a day..you can see some thinning in the front in the second picture with a nice big spot right on top of my head... my hair looks a mess if i dont brush it..before the loss, brushing it would make me look like a frizz queen with unmanageable hair... first pic is from 2009 and the second two are form last week...i didnt brush my hair when the first pic was taken..just applied some mousse to give it some definition..im only 31 and planning to get pregnant soon...i really hope the chronic TE Is vitamin d related and not some weird, vague thing..that way i can at least latch onto some hope of retaining some hair after the second pregnancy :(


    4835_870169615970_2509346_n.jpg photo 1 (2).jpg photo 2 (3).jpg
     
  10. hairlosshelp

    hairlosshelp Established Member

    Joined:
    Jan 9, 2015
    Messages:
    287
    Likes Received:
    4
    Dislikes Received:
    0
    Damn, give me your hair please! To me it doesn't look too bad actually because ever since I've began my crazy obsessive analyzing of other people's hair I noticed that a lot of girls have that "bald spot" on the top of their hair...it's very common from what I've seen and it might have something to do with how the hair grows. Also, I'd be careful about rogaine and I think it's incredibly stupid for the derm to put you on that even if you've showed them a scalp biopsy that shows no signs of Androgenetic Alopecia. EVEN if it's wrong or if something has changed since, rogaine's a life long commitment that isn't guaranteed to work and is likely to stop working after a few years when it's overwhelmed by DHT. The derm told me "you can try rogaine" with a shrug without bothering to tell me anything else and I've kinda realized that a lot of them simply don't care when it comes to this. You'd probably regrow the hair that you lost once the vit d issue is resolved. Good luck!
     
  11. beelum

    beelum Member

    Joined:
    Feb 16, 2015
    Messages:
    73
    Likes Received:
    0
    Dislikes Received:
    0
    Thank you for the compliment. :) i feel fortunate some days when i realize that i was born with so much hair that even after two years of consistent thinning, it doesnt show THAT much..but still enough to freak me out and make me miss my old hair like anything..i really took it for granted. and now since its thinning i take really good care of it. or at least try to. i felt very iffy about trying rogaine but she was so convinced i had Androgenetic Alopecia even though i showed her the biopsy report that i decided to give it a try..i was just desperate to try anything at that point...but i started reading more and more on how rogaine ONLY works if you have Androgenetic Alopecia and even then its not a guarantee..i would still be using it honestly if i didnt go through the "dread shed" just to see if i had some regrowth at least, but the dread shed was HORRIBLE..like just insane...it didnt even feel like my own hair anymore...so i just had to stop...given the uncertainty about the cause of hair loss. i even read in some places that a lot of ppl experiened the dread shed for months into applying rogaine but thankfully mine only lasted three weeks...honestly im thinking of getting another biopsy done (i have a follow up with the doctor who prescribed rogaine) next month and ill ask her to do it in two places where it wont be visible. if that comes back negative as well, then i know i definitely dont have Androgenetic Alopecia..ive heard biopsies are pretty accurate ...or is that a myth? im calling my GP first thing on monday and requesting to be put back on vitamin d Rx. my last level (22) was tested by an endocrinologist who suggested nothing for it obviously..
     
  12. Topcat

    Topcat Established Member

    Joined:
    Apr 4, 2015
    Messages:
    91
    Likes Received:
    0
    Dislikes Received:
    0
    I know you are aware of how much you are losing but you have a beautiful head of hair, get back on the vitamin D (as your level is too low) and hopefully your hair will get back to normal, I did lose a lot of hair after my second baby and from what I read now thats quite normal but back then I didnt even give it a second thought or wonder why was too busy with baby and moving house lol.
     
  13. beelum

    beelum Member

    Joined:
    Feb 16, 2015
    Messages:
    73
    Likes Received:
    0
    Dislikes Received:
    0
    been trying to get in touch with my doctor about the vitamin d. hair shedding is still fluctuating..lost like 18 yesterday but today lost 40...:/
     

Share This Page