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CTE regrowth?

Discussion in 'Women's General Hair Loss Discussions' started by rwchdr, Feb 5, 2016.

  1. rwchdr

    rwchdr Member

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    Hi,
    I suffered from CTE for more than a year due to chronic illness (which has been resolved by a tonsillectomy). During the last 2 weeks my hair fall rate has been back to what it used to be a few years ago , however I have problems with regrowth. I do have hormonal issues, high androgens since I was a child (hirsutism), it's a genetic thing called Congenital Adrenal Hyperplasia. I have no weight & menstrual abnormalities. I was diagnosed last week and I will start taking medicine for it next Monday. I never had hair problems, always had thick hair before the telogen effluvium started. I also have seb derm which is now under control.
    When I was shedding a lot I noticed a lot of my regrowth was miniaturized (i was mostly shedding short hairs = short cycling which has corrected itself). My derm said it's not androgenic alopecia since my parts are wide everywhere (sides, back too) and these thin hairs can be the result of high shedding. The wideness of my central part did not change in a year (maybe got better when I corrected my ferritin). The thin hairs are dispersed all over my head.

    Should I have hope my hair will regrow normally or should I just try to accept this will never get better? My hair is ridiculously thin at the moment, even at the back of my neck. I have some normal thick regrowth as well. The overall texture of my hair has not changed.

    Thanks for reading
     
  2. hairtothere

    hairtothere Established Member

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    I was told that it is impossible to rule out androgenic alopecia without a scalp biopsy. I had two different derms and my family Dr. all say this. If you have high androgens and hormonal issues that might be a big part of your hair loss. Have you been diagnosed with PCOS or had that ruled out?
     
  3. rwchdr

    rwchdr Member

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    They don't do biopsies here. I tried, but they just don't. I have CAH, not PCOS. Congenital Adrenal Hyperplasia. No cysts, normal periods, normal ovulation, no excess weight. I had very detailed bloodwork done (I insisted because of the hair loss). I started getting hairy (hirsutism) when I was 8 years old. I had very very thick hair on my head until the telogen effluvium started, which is a bit more than a year ago. I'm not shedding anymore, it stopped. This is why I am confused about this.
    I'm getting on a treatment for the adrenal problems next week, to be sure. But I don't know what more to do, there is no balding in my family.
     
  4. Distraughtshedder

    Distraughtshedder Established Member

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    I think you hope for the best but learn to accept where you are at and be ok with it in case all of it doesnt grow back. :)
     
  5. DisTressing

    DisTressing Established Member

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    Hi rwhchdr, although I can't say whether or not you may have an underlying hair condition (perhaps it is worth going out of your way at some point to get a biopsy just to give you peace of mind) but if you "just" have CTE, and any known medical issues have been addressed and are under control, your prognosis for regrowth should be good. However, please know that regrowth takes a looooong time and is an incredibly frustrating process. Once your shedding has really begun to diminish, I doubt you will notice any regrowth for at least a couple of months. You should not expect to notice anything two weeks after your shed returns to normal, and also, it's entirely normal in CTE for the shed to fluctuate and pick up every now and again, which might set progress back a little in some areas of your scalp.

    I've shed it all - short hairs, long hairs, miniaturized hairs, fiber-like hairs..lost probably over 50% and what's left often feels shockingly thin.....but once my hair stopped pouring out in October, it took until December before I noticed any kind of improvement, and even that was fairly minimal. Now after I shampoo, little hairs are sticking up everywhere and my hair looks huge! Then it calms down and is noticeably thinner to the touch. I now see hints of my hair's former shape returning, although it is very hollow still, just like putting my hands through air underneath. That is because all that fine regrowth coming is not yet enough to create any real, lasting volume. It took 14 months from the onset of shedding to get to this point where I actually see my hair growing out, and some stubborn spots like my right temple, which went completely bald last January, are only just starting to recover. So please don't give up hope. My formerly super thick hair is still about 50 percent of its former density, and because it's also very long, I am expecting the recovery process to take at least another 1-2 years to complete. I never thought I'd see any kind of progress at all after endless months of what looked like absolutely no sign of regrowth whatsoever. Good luck to you, and continue to monitor your health and hair without stressing yourself out like I did. And if it turns out to be something other than CTE, remember that there are other options to be explored as far as treatment.
     
  6. sheeny

    sheeny Established Member

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    Hey there rwchdr!
    I know a bit about CAH, as well as late onset CAH, and PCOS. CAH is usually identified at birth because quite often your body can't survive with your natural adrenal/cortisol production & functions, so I'm guessing you have late onset? If so, the good news is that it is quite often so mild that people might never even know they have it were it not for a few symptoms similar to some that you described. From my understanding, in late onset CAH, the body produces excess androgens from the adrenals. People with CAH are often misdiagnosed as pcos because many symptoms are similar. Contrary to CAH, excess androgen production in pcos stems from the ovaries. Although these excess androgens tend to produce many of the same symptoms (huistrism, hair loss, oily skin, fertility issues), treatment to block the androgen production is different because one involves intervening in the ovaries, and the other needs to work with the adrenals. Unfortunately with CAH, male pattern balding is an unwanted symptom, but it isn't the norm with all cases.

    I would like to add, if you have any questions regarding CAH or adrenal function, specifically non classical/late onset I may be able to help with the basics. I have spent nearly a year researching this disorder, speaking with some of the best adrenal drs, endos, etc. As a result, I now know quite a bit about it ;)
     
  7. rwchdr

    rwchdr Member

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    Thanks for your kind answer, DisTressing.
    I also shed all kinds of hairs but I always had regrowth, and fairly lot of it. The problem is, that some of these hairs are very thin.
    I'm very grateful for your encouraging answer though. I worked very hard on my health during the past year, with all medical issues under control for a long while except for the adrenal hyperplasia, but I'm starting treatment for that too on Monday.
    I even had tonsil surgery because they were chronically infected and 2 months after the surgery my shedding stopped. It never decreased to such a level before (during active shedding). Actually, it never really fluctuated. I noticed some fluctuation when it started to taper off.
    I would have liked to have a biopsy but they don't do it for this reason in my country.
    Thanks again for your reply and wish you the best.

    - - - Updated - - -

    Hi Sheeny,
    You seem really knowledgeable :)
    Yeah, I have Late Onset CAH. Mild form. I have had hirsutism since I was a kid. This bothered (and still bothers) me to no end, but my parents thought I was just complaining so I never saw an endocrinologist about it. I had a few pimples in my teens but nothing ot of ordinary. Oily skin, yeah, my mother has it too, so no surprise. I developed seb derm in the past few years but I had horrible eating habits and stress because of university.
    I also started researching because my hair was my most beautiful asset and I did not want to lose it (like any of you ladies here). I had blood tests which determined the excess androgens come from my adrenals, my ovaries are completely healthy. My gyno did ultrasound on me two times during the last few years. All fine. My period is right on time, nothing extraordinary, female hormones perfect.
    My new endo said my case of CAH was very mild, but I asserted to take the treatment because I am scared of balding. Even though the appearance of hair has not really changed in a year. It's sparse everywhere, and that's it. Otherwise it looks like it used to. Shiny, silky even. As I said I had no hair problems before the CTE, and fortunately it seems to have stopped completely. I washed my hair yesterday after 3 days and I lost ~ 20 strands. Just to compare, I had lost >100 with daily washing during my shed.
    I'm starting dexamethasone treatment on Monday but I'm a bit afraid I will gain weight (I'm quite slim and always have been).
    Thanks for your reply, I appreciate it. :)

    - - - Updated - - -

    Thanks :)
     
  8. sheeny

    sheeny Established Member

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    I hope the Dexamethasone does what is supposed to do for you! Do you mind if I ask how your adrenals function, for example if you get sick- like a fever? Do you get extremely high fevers and lethargy?
    The reason I know all of this stuff is that we thought my toddler daughter had adrenal disease for almost a year. The poor thing went from specialist to specialist & had test after test preformed in the hospital. After almost a year of this, one endo checked her 17 OH progesterone & found that it was slightly elevated. Not at CAH levels, but above normal. She had more testing done & we discovered she is actually a heterozygous genetic carrier for a very rare form of CAH, meaning she got the gene from only one parent so she doesn't have the disorder, she can only pass the gene on to her future children & if she has children with someone with that same gene, then they risk having a child with CAH. So her future partner would need to get tested ;)
    Anyhow, just being a carrier has been the source of some mild symptoms- the elevated oh progesterone hormone & a few other things, one being low adrenal response when her body goes through stress (like a fever).her fevers have always been unusually high since she was an infant- around 104f, now we know why. Just curious if you have experienced the same :)
     
  9. rwchdr

    rwchdr Member

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    Thanks! :)
    I am also scheduled for genetic testing in April & was told my future partner would also have to undergo the same. My OH prog is slightly elevated and my prog reaches pregnant levels during my luteal phase (according to my endo it can happen with this genetic problem).
    Yeah, I have had my share of very high fevers in my life, that's for sure. I did not know this had something to do with the adrenals though, nice to know! I also handle stress way worse than others (I mean the impact of a certain moderately stressful situation on me is disproportionally bad), I don't know if that has a connection to CAH as well.
     
  10. montanaskigirl

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    Okay, so take everything I say with a grain of salt. I am just speaking from experience and I am a random internet person. It could likely be CTE. I had TE. Shed went down and had a little bit of regrowth and not much. Second shed came and this was different. I do see signs of miniaturization. I have PCOS. My TE triggered/unmasked Androgenetic Alopecia. I thought it was the end of the world but I started Rogaine two weeks ago and got back on spironolactone. I have no widening of the part. My hair density in the last few months became thinner than the rest of my head, but its pretty much diffuse loss. I went for a biopsy to find out it was Androgenetic Alopecia (biopsies are not always correct but adding the other factors I do feel certain). I jumped on treatment and I am so happy I did. I wish I had started treatment right away during the second shed because I would have saved a lot of hair, but that hair might come back. My best advice is to not stress but be very aggressive about getting answers. Androgenetic Alopecia is aggressive and so is CTE. I went to multiple derms and I was turned down three times for a biopsy. I went back in there and basically demanded one. Since finding out the bad news, I feel better. At least I knew what was happening and what to do. Taking those steps has made me feel so much better. I just would hate to see you have to wait it out forever and post pone treatment.

    I see the endo Wednesday. I have PCOS but other stuff is going on. I live every single day so tired its like I have been drugged. I do have depression but I can tell the difference. My thyroid tests come back normal.
     
  11. rwchdr

    rwchdr Member

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    Thanks for the input :)
    You said you had PCOS, have you been tested for insulin resistance? What are your other symptoms?
    I have started treatment for my adrenal issues which will significantly lower my androgen levels. I will also try asking for a biopsy again when I have enough money to visit my derm (not very soon unfortunately). But yeah, there is a very small chance they will do it for me (and IF they did, it would cost me a fortune). I live in Eastern Europe, doctors only do these when an obvious and very severe skin problem is present.
    I will try to trust my endo until then and take my meds for the adrenals. She said we should not mess with my natural female hormones as they are okay and they are most important for hair etc.
    You are right though, I don't want to wait forever either, but I still try to believe the main culprit was my bad health & constant tonsil infections. Since I had my surgery, I have really been changed. I, myself did not believe it first, but my energy returned, my depression& joint pains went away. Hair loss decreased... I hope it will resolve itself, if not, I don't know if I'm ready to use minoxidil and such. I think I will just shave my head, buy some hair and try to be happy with it. Kinda.
    I know it sounds shallow, but please try not to let this bring you down even further.
     

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