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Reena's Story - 31 - Te, Hypothyroid, Androgenetic Alopecia?

Discussion in 'Tell Your Story' started by reena, Aug 26, 2017.

  1. reena

    reena New Member

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    Hello everyone! I am excited to post here for the first time. I have really enjoyed browsing this forum.

    My rapid shedding and hair loss started about 12 months ago. Summer 2016 I noticed my hair looked a little bit thinner in the frontal part area and I was losing lots of hair in the shower. DH had to declog the bathtub drain. My daughter turned 2 last summer, so I knew it wasn't pp shedding. I have always had very thick, dark, voluminous, fairly wavy hair.

    I have talked to my primary care dr multiple times, I have seen 2 dermatologists and paid out of pocket to see a trichologist. The only one that was remotely helpful was the trich. But even she wasn't that great. I have not been successful in getting a scalp biopsy, and I have only had minimal labs (testosterone, very basic thyroid labs, ANA, ferritin). The trich's dermascope did find miniaturization, which I already knew about because they are easily identified among the shed hairs (also long hairs are thinner at the bulb end). I lose long 'healthy' hairs, normal regrowth, and thin fine miniaturized hairs. She diagnosed me with TE and was reluctant to say I had Androgenetic Alopecia, and if I did it was "very early".

    Also, when my daughter was 3 months old, I was diagnosed with hypothyroid via TSH. My dr. left the practice and I didn't actually get on thyroid meds until Feb 2016. TSH was around 4.1. I was given 50 mcg generic levothyroxine. I was horrified to learn, not only is hair loss associated with hypo, levothyroxine can cause TE and hair loss (or possibly DOES NOT effectively treat hypo, thus symptoms persist). My Dr will not test free T3 or antibodies. I am fatigued all the time. I feel like my hypothyroid is a piece of this puzzle. I know I have TE and I am quite certain Androgenetic Alopecia is at play. This has been so fast and heavy. I just can't believe it :(

    My hair is thinner all over, but top scalp has taken the biggest hit. I have always side parted my hair, and at this point, you cannot see through the hair at the top of my head, but at the side part - creeping visible scalp is becoming more and more evident. A middle part reveals noticeable scalp and very skimpy coverage above my forehead. I have no idea what another year of this will bring, so I started 5% minoxidil last night, and felt very depressed afterwards. I would like to start Spironolactone, too (I also have weird back acne, maybe it will help with this, too). I am going to give a trial of these meds 6-12 months. I am scared of the dread shed. I have considered buzzing my head for a long time, mostly to get some relief from the constant shedding: hair on the floor, hair on clothes in the wash and out of the the drier, hair loss while showering, etc. The only thing holding me back from buzzing it all down, is that I do not have a nice round head in the back of my skull. I have no idea how it will look.

    Well that's enough rambling. Wish me luck. I look forward to interacting with you all on this forum! :) Thanks for listening!
     
  2. 3monkeys&me

    3monkeys&me New Member

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    Hi Reena,
    Thanks for sharing your story. I, too, have been struggling with thyroid issues (I trend toward hyperthyroidism) and TE/androgenic alopecia. My dermotologist recommended spirolactone too, but I opted out (I didn't want to deal with potential side effects) and started saw palmetto instead (160mg twice a day). I saw a pretty dramatic decrease in shower and daytime shedding within a few weeks. I've been on it for about 2 months now and my back and face acne has really improved too. This is just my experience. I know that SP is not for everyone, but maybe something to consider.
    Best of luck to you!
    S
     
    reena likes this.
  3. reena

    reena New Member

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    Thanks for replying. I wanted to comment back but the site was down for a while. I've actually used saw palmetto before when I was nursing my daughter (apparently it can increase milk supply for some people - probably those with PCOS maybe). I was wondering if you have ever had a scalp biopsy? Are you on any thyroid suppressing medications or have you had radioactive iodine? I might try saw palmetto in the meantime. I have read about a supplement called Nutrafol. It contains saw palmetto plus a bunch of other things that hit hairloss at all points in the cascade, or so it claims. It costs $88 a month. I would try it, but wow I would have to do some budgeting to afford a 6 month trial. As for thyroid disorders, I just can't seem to figure out if there is a winning medication combination for hair regrowth or stopping the shed. It would be one thing if I had Androgenetic Alopecia without the shedding... the constant hair fall is really the worst part. How has your shedding been since you last replied?
     
  4. reena

    reena New Member

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    Hi nes, thank you for the reply, I agree rogaine is a bit of a gamble. But coming on 14 months of hairloss without any concrete answers, it was something I was willing to try while I fight for answers. There are a few reasons I suspect Androgenetic Alopecia along with TE (I am not sure whether the te is a possible symptom of Androgenetic Alopecia, or if the te is 'unmaking' Androgenetic Alopecia, but here they are):

    -Trichologist's dermascope took images of areas of my scalp and found miniturized hairs. I need to call them to get the ratio, but part of my personalized treatment package included a form of minoxidil. I opted against the package because the whole thing would cost me about $200 a month.

    - A portion of my shedded hair is thin, reduced in diameter and light on color. They don't even look like they came from my head. Some hairs, especially after showering, while styling my hair, look like thin cat hairs.

    -If I examine a long seemingly healthy shed hair, more often than not, they are thinner in diameter the closer I get to the telogen end.

    -While I have had a global reduction, my top scalp, especially the frontal area are hit big time. Maybe 40-50% reduction in hair density.

    I will look into the thyroid supplement. I do realize periods could become irregular on Spironolactone. My T was 21, which is not high at all. My GP didn't test DHT. My next course of action might be an NP, after I see this derm next month. I have a good recommendation to an ND/NP from a friend that has had so many physical ailments (including hair loss). I feel like one barrier for me is the fact that I am a full time student and have medicaid insurance. My insurance will cover almost any lab I need, but my doctors wont do further testing or refer me to an endo. I got a good recommendation for a derm from my trichologist. She was certain he would run needed labs and do a biopsy...but when I called to make an appointment, I was informed he does not take insurance and it is illegal for them to take me on as an out-of-pocket patient if I have medicaid. I am going into healthcare. As soon as I get my degree and become employed in my field, I should be able to get good health insurance. But that is years down the road. I would really really like a biopsy done with a differential for other alopecias, too. Any advice on convincing a derm to do one?? I really think it is warranted at this point.
     
  5. reena

    reena New Member

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    Thanks again for the heartfelt response. Ugh, so you know what it's like to have to focus on studies while hair is popping out of your head... It's the worst. I took the summer off because my anxiety about hair loss was competing with my attention to studies.

    I see you saw Dr. Donovan? How was he? Better than the other derms you have seen? He seems to be the expert on telogen effluvium. I would see him if I could afford to fly to Canada. I think a lot of doctors here are under constant scrutiny here because their practices are linked up with large health networks. There is an incentive to keep 'unnecessary' testing to a minimum. I'm guessing my doctors didn't want to test T3 and antibodies because they just go by the standard TSH, and they probably have no experience prescribing desiccated thyroid hormone. I guess full panel thyroid testing is still somewhat controversial here. DHEAS is a good one I didn't think of before!

    You are probably right on holding off on the Spironolactone. I definitely feel worried about minoxidil as a mono-therapy. I worry it could lose effectiveness overtime. Some women with early fphl seem to do really well on it, so maybe time will tell. I hope your shedding is slowing down. You deserve a break. This is so bad for one's nerves, I swear.
     
  6. tula

    tula Member

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    Reena,
    I am curious how things are going? My hair loss sounds so much like yours. Mine was triggered by a supplement I was taking to help regulate my cycles, but I didn't realize it was the supplement until a year later and by then it really messed things up and my hair loss now won't stop after almost 2 years :( It sounds like yours, thinner all over, side part getting wider but way more noticeable in the center. One temple is a lot thinner than the other.
    I had a biopsy that said probably early Androgenetic Alopecia, but it is very subtle. If it is so subtle where did all of my hair go??!! I suspect only balancing my hormones will truly help me. I am basically having menopausal hair loss without menopause...
    I have not tried rogaine yet... I probably should but I know if I start I may have a terrible shed and it is a life long commitment. I am only 34 so that is quite daunting. This is all so stressful and depressing.
     
  7. reena

    reena New Member

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    Hi there. I just had my 32rd birthday. It's crazy i am 32 and on minoxidil. Never ever would have thought in a million years.

    I'm actually doing quite well at the moment. Hard for me to admit because I fear the moment I become comfortable, trouble will start up again. The dread shed started at week 5 on Rogaine. I would comb my bangs and top scalp and just watch the hairs pile in the sink. I knew this would happen, but it was hard. Stopped around week 7. I am on week 11 or 12 now? Once a day 5% solution (I use 2 ml instead of 1, because I needed full coverage of my scalp).

    I just had probably the best derm or doctor's appointment the other day. I had requested to see a different dermatologist at the university dermatology department because I really hated the first guy I saw last March. The nurse informed me that they don't just switch patients without the original doctor signing you off to someone else. Sorry, not my problem, I asked and they switched me over the phone :/ I first saw a resident, and she was great. I was there for the hair thing (even though minoxidil has helped), and my horrible hormonal/menstrual cycle related back acne. The resident seemed kind, receptive, and was impassioned because she said they just covered Telogen Effluvium educationally. She herself recently experienced TE and assured me it was self limiting. I explained after 14 months, I needed to try something. She discussed with the teaching derm and then he came in, talked to me. He said frontal thinning is pattern, and if I feel the minoxidil helps, I can keep up with it. They both agreed they wanted me on Spironolactone for the back acne and hair issue. I think they felt the TE wasn't that big of a deal, and put the kibosh on exploring a scalp biopsy, "too invasive, won't tell us much." They felt I could wean off the rogaine once on Spironolactone. I'm not sure about that.

    All in all, it was very helpful. I am excited and nervous about Spironolactone. I have the bottle right now but haven't taken any. The back acne is relentless. It started at 26. I got pregnant with my dd at 27, and the back acne cleared up by my 2nd trimester, and stayed away for the most part until dd started weaning from breastfeeding and my first postpartum period came back - then it was back full force. I don't have high testosterone, and DHT has not been tested. I am going to ask my primary care doctor if she feels there are any necessary tests we should do before I start the Spironolactone. I kind of want to know how my estrogen and progesterone are before I start. What do you all think? Anything important I should ask about testing with Spironolactone? The derms thought it would be fine to use without labs.
     

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