My story (very long)....

Discussion in 'Looking For Advice (my story)' started by JJD, Nov 27, 2011.

  1. JJD

    JJD New Member

    I hope I'm posting in the right spot. I read posts almost every day and I feel a little better knowing that I am not alone but it is very depressing. I turned 30 in October, but I noticed my hair thinning around June of this year, and ever since then it’s been getting worse to where I can now see my scalp around my bangs and my part is getting wider. My hair was my best asset to me, always very thick. I loved getting it done and colored and always made sure it looked good, I could NEVER pull off a bald look, I just don’t have the face for it and who knows what the shape of my head is... Now, I haven’t colored it since last year (my hair got very dry all of the sudden last winter, I guess that was the start of all this) so I thought if I took a break from color, blow drying, and straightening it will get better. I still have a lot of hair in the back, but the top and sides are very thin. So I have been to two dermatologists and an endocrinologist and, all did blood work and everything came back normal (I was actually disappointed which is sad I know)… There were times where I thought my hair was getting better so I was starting to feel better about the whole thing until I got this really bad itching and burning in my scalp, and I noticed more hair loss. Anyway, so I couldn’t take the itching and burning anymore and went back to the derm. He talked me in to doing a biopsy and I just wanted to know what was going on so I went for it; I really thought something was wrong with me because the scalp pain/itching/burning was unbearable and I have never experienced anything like it. Then about two weeks later my nightmare came true; I got the results. They told me it was hereditary and I just started bawling, everyone in my family has nice hair, none of the females have this problem but I do have a bald uncle so I'm guessing I got his genes. Untill now I never heard of FPB and didnt think women lost hair (except from meds/chemo or health problems) I never knew we actually got hereditary balding. Now that I know it’s genetic, I feel like it is inevitable that I will be bald. I don’t even feel like its gradual, it just started so fast and out of the blue.

    The dermatologist put me on 200mg spiro and I bought Rogaine but don’t use it consistently enough to see any difference, it is so inconvenient.. I am also using this shampoo the other derm prescribed a shampoo called ketoconazole which I think helps with the itching/burning part, but it’s so annoying because I have to leave it in my hair for 5 min, I use it every other day. I know this is long and I hope you are still reading. I just wanted to post my story. I have spent so much money on dr bills/meds vitamins and I feel hopeless now that I know it’s AGA. I feel like the spiro is helping with the shedding and the oiliness of my skin/hair but I don’t like taking it, I don’t like taking any medication but I’m desperate. Oh I forgot to mention I have the worst acne I have ever had in my life. It all started around the same time, so not only am I losing my hair but my face turned into a war zone. I think it’s cystic acne and it’s not looking any better yet. The pimples get huge and very painful; it seems like its spreading. I will give it another month and then making another appointment with the dermatologist. I tried everything over the counter and spent a lot of money on that but nothing is helping. I was hoping the spiro will help with that too since I read that it’s good for acne but it’s been over a month now and face is still breaking out; but less oily so that’s good. Last thing, I took a copy of my blood work and looked at it, all was within normal ranges (some on the low end) but my Sex hormone-binding globulin (SHBG) was very high, it even said out of range on the form but the Dr’s seem to think it’s no big deal because the rest of the blood work was fine. Why is that one so elevated?? :confused: It has to mean something but no doctors seem to worry about it or look into it more... so frustrating :(. My hair is think on top, temples, my part is wide, and my sides are extremely thin (above my ears). Does this sound like MPB or FPB???because I thought the sides should stay in tact but mine are super thin. I became obsessed with my hairloss and with looking at every other womans hair and comparing it to mine. When I see a young woman with thinning hair it makes me feel better and I feel horrible about it. Everyone is tired of hearing about my hair loss so I feel like I don't get any support from friends, they all think i'm over reacting but their hair is fine. I constantly think about my hair and take pictures of it at different angles to see if there is any progress but it just looks worse every time. I even noticed my part got huge going half way down the back of my head and I never had that before, I never had a part there. I feel like this is making me crazy. I'm a single mom of two young kids and work full time and go to school full time. I feel like I'm not paying enough attention to my kids because all I can think about is my hair. My school work is getting worse, everytime I start homework or anything I either end up on this site or reading about hairloss some place else. I even do it at work, I dont know what to do :( Sorry for this long sad story but I just wanted to get it all out since I don't really have anyone to talk to about this and any advice would be great.:)
  2. JJD

    JJD New Member


    OMG my hair looks just like this lady's hair except it's not as thin on the top (yet)... but it's almost the same on the sides and the temples... The part is the same too; wider and long. I thought my problem was TE until I had a biopsy done and they said it's hereditary. I was on Zoloft for anxiety for almost two years until I weaned myself off back in May. It was stressful and I had withdrawals from it but all the doctors keep reassuring me that it did not cause hair loss. Thanks for posting the videos, this makes me feel a little better :).
  3. JJD

    JJD New Member

    Thank you so much :)
  4. What is Happening

    What is Happening New Member

    Hi JJD
    I've got exactly the same symptoms as you - burning, itching and discomfort of the scalp. It pretty much is always with me but fluctuates in intensity. At its peak my hair shed much more.

    I haven't had a diagnosis - but my mum has very poor hair - we think genetically (the unfortunate part is that my mum's maternal auty had thin hair but she was only a half sister to my mum's mum but that gene managed to survive and transfer). Believe me when I say all of my cousins have beautiful blond, thick hair - then there is me and my mum. My brother has MPB but he didn't experience any pain or burning at all.

    Did your medical advisers say that the burning was because it was hereditary hair loss? My mum has had gradual thinning of the top section of her hair since about the age of 40. She still has good hair at the sides/back but she didn't ever feel any burning/pain during her hair loss. Mine started out of the blue at 37 and is very progressive (seriously even at her worst the lady in the YouTube video has hair I'd kill for!) but it's the pain, itching and burning I can't stand. Also my hair loss is very different to my mums which is that my hair is very fine all over my head - nothing has been spared. Can FPB lead to different loss patterns between relatives.

    Have you found anything that has taken the burning away? I also get bad acne but at the base of my scalp and into my neck.

    I can't tell you how much my hair has changed in two years - I too thought this was a gradual process but for me its clearly not. I don't even think i've got another years worth of hair on my head at the rate its declining but it's taken my mum years to get to the level of progression she's at? I just don't understand.

    Hope you're doing OK through this - may be you do have TE which is treatable. I was diagnosed by a trich as having CTE - I'm pumping supplements into my body but to no avail. Do let me know how you get on.

    I do hope you're OK - good luck
  5. What is Happening

    What is Happening New Member


    Sorry forgot to say that I would think it would be very relevant to your current position that your blood tests came back to show high levels of SHBG. I am far from being a medic but surely the increase in SHBG may be linked to enhanced DHT levels which are linked to FPB? Does your medic not think this is worth further investigation - can they not find out why your SHBG is increased and try to regulate it or balance your usual sex hormones i.e. testostorone?
  6. JJD

    JJD New Member

    Hi What is Happening,

    Thanks for replying to my post. When I talked to the dermatologist about the pain/burning/itching he never answered me really, he just gave me this foam steroid stuff to use. The last time I saw my dermatologist I didn't know the results of my biopsy so I didn't know it was hereditary. He kept telling me it's probably not. Then I got the results over the phone by this voice mail system that they have so I couldn't even ask questions about it, it said to continue with the spiro and follow up with the dermatologist (never said when or any other details...) I haven't been back since but I have been taking the spiro which I think helps a little because my hair and face isn't so greasy, my face is still a little but not nearly as bad. However, my face is still breaking out and getting worse, it looks like it's spreading.

    I have an appt with a gyno next week so maybe he can help me with the SHBG or answer some questions. The derm would have never even told me that this was elevated, the only way i found out is because I requested my blood work and read it myself and googled everything lol.

    I know how you feel about the burning/itching. For a while my scalp almost felt like someone took a razor to it and it was raw (but looked normal).. I notice it's worse when I stress. (I'm stressing bad now because i'm in finals week and procrastinated too long with my projects). I am still using the perscription Ketoconazole shampoo every other day and i think that helps with the itching and burning too. I'm so desperate to find something that will work, I even started drinking apple cider vinegar YUCK!!! only did it two times so far and it's disgusting lol. I have been spending alot of money on different vitamins but nothing is helping or maybe i'm not using it long enough.. Most recently I got these organic whole food prenatal vitamin... they have more iron and I feel like my iron is low, the doctors say it's normal. When I saw the naturopath she told me I was anemic, but according to Drs I'm fine so I dont know :( I hope you are doing ok too. I just need someone to talk to, noone else wants to hear it and think i'm over reacting. No other women in my family have this problem so they just don't understand. "it's just hair" they say. This has made me so sad, this is all I can think about.
  7. What is Happening

    What is Happening New Member

    I completely understand your frustration regarding people not understanding and getting you to move on. I think I've run out of hair credits with my friends/family - it is such a massive thing and I could talk about the impact it is having on me every day all day. People just expect you to get on with stuff and act as though its not happening - I sometimes wonder whether they would cope better than I do with this. I burst into tear all the time about my hair - when I'm out running, when I'm on the tube, in bed, leaving the gym. My life would be great without my hair problems - with them, I'm really struggling to keep on going.

    I to agree with you on the anxiety front too - but it is a cycle - it hurts, you worry, it hurts more, the hair drop starts, you worry, it hurts more. I still dream about having my old hair back - despite waking in the night in a cold sweat having actually dreamt about my hair loss and having no hair (happens regularly).

    It's so confusing about the medication - but it does seem strange that we have very similar symptoms - I get acne at the back, I've got greasy skin (didn't used to have) and the hair problems we've established. Your burning sensation started suddenly, so did mine.

    I really feel that my hormones are out of synch - you've inspired me to go back to the GP tomorrow and insist on a referral to an endo specialist. Reading more following your post, I guess it could be linked to low testosterone and/or and estrogen dominance. The problem I experience is that your results can be boaderline so the GPs don't do anything. You are left then wondering yourself whether you should go onto the pill to boost hormone levels, start aggressive hairloss treatment. I just find it so hard to get answers from people on what to do - I'd just love to happen across the right thing to do and provide advice to people in the same situation. How do we know that if it gets worse in years to come and someone says - oh if you'd done this or taken that it would have not been so bad. That will be my biggest nightmare.

    I've been taking high doses of iron for about 2 months my level was in the 30s (I think) when I last had my bloods done. Again this is normal medically however the trich said it needed to be at 80. However, I'm kind of giving up inside on the hope that it is anything other than the worst cause possible. I'm not sure that the biotin would cause your acne - again your GP should indicate whether this is due to a hormone imbalance. But its so easy to jump to conclusions when you're so desperate for answers, explanations and God forbid something which may slow or reverse this living hell.

    Listen, as one fellow student to another good luck with your studies and try to keep your mind clear enough from your hair worries to actually focus on what you should be doing! I find that a job in itself.

    There's loads of people here to support you, so don't feel alone. Good luck and stay in touch - I'd love to hear about your further results/tests and I'll do the same from here - it just seems strange we have the same symptoms so who knows.

    I've had the most horrid few days with my pain/hair shedding but talking to you has helped, so thanks
  8. What is Happening

    What is Happening New Member

    Hi JJD
    Just one more question if you don't mind. Where do you get your burning sensation on your scalp? Is it just on top or is it in the areas where your hair is thinning? I get the burning only on the top (which is thinning) but not around the rest of my head where the hair is also thinning. Just wondered if this was similar to you.