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Chronic Telegum Effluvium Or Androgenetic Alopecia?

Discussion in 'The Undiagnosed' started by RumTruffle, Jun 3, 2018.

  1. RumTruffle

    RumTruffle New Member

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    Hello Ladies,

    Hoping you can help a bit here... I started noticing my eyebrows were thinning in the outer third about a year ago, got a thyroid test done which was absolutely fine, so stopped worrying about it. Then over the next few months my ponytail got much much thinner than before and I started to worry about my hair. I was taking anti-viral pills when needed and I found that alopecia was listed as a side effect so I spoke to my doctor and swapped to a different type of anti-viral that did not have this listed as a side effect, but the hair loss got worse and I am now at the stage where I can't wear my hair down as there are only straggly lengths to it.

    I saw two of the best dermatologists in London and had all the bloodwork done. All my bloodwork is perfect, my zinc is well above recommended levels, hormone, vitamin, liver, kidney, autoimmune, etc are all fine. I had a hair pluck test which showed a higher than normal telogen count but not excessive (15%). The first dermatologist said I have androgenetic alopecia, but my centre parting is fine and I am thinning all over my head. Also there is no family history? I think he based this on the lack of hair at the temples but I think as it was thinner here in the first place it is just more obvious although the hair has fallen out everywhere. The second dermatologist said it is more likely to be chronic telogum effluvium (which I was happier about as it fitted my own google-inspired diagnosis!). The advice from both was to use minoxidil. Neither dermatologist thought the anti-virals were the cause.

    I'm not doing too well with the minoxidil. I used the 5% lotion (2x per day) prescribed and ended up in A&E with a massive blood pressure spike. I then tried regaine's over the counter 2% lotion and the same thing happened. I then tried the foam and have actually been ok with that (weirdly) for the past two weeks but I'm paranoid about the side effects and my chest feels a bit tight and I'm sure my tinnitus is worse. I don't want to use it but neither do I want to lose the rest of my hair.

    Is there any way to confirm if this is telegum effluvium? If so does your hair always come back naturally, even if it is chronic? I'm not sure what the trigger may be as there are so many possibilities - I did 3x IVF but they ended 18 months ago, my dad attempted suicide but that was also over 18 months ago, and then there is the medication (anti-virals) and my job has been quite full-on.

    Feeling a bit alone with this so happy to have found this forum.

    Thanks!
     
    Lope36 likes this.
  2. sunshine21

    sunshine21 New Member

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    Hi RumTruffle, you’ve really had it tough these last few years. It is most likely that the emotional upset has manifested itself in physical, emotional and psychological stress. Sometimes, whilst we are going ‘through the motions’ losing hair isn’t something we recognise straight away. Having had post natal depression, anxiety and the loss of my safety net/ security blanket - my dear dad, I have lost over a third of my hair.
    There are a few supplements which I think helped reduce the hairfall count. 1. Taking Ashwaghanda, a herbal Indian ginseng, which helps to reduce the impact of stress on the body.
    2. Bamboo silica, iron supplement, high strength omega 3, vitamin D, vitamin C. OR...
    3. Florisene or Nutrihair supplements. (Both have the same ingredients). Many of which contain the above supplements I was taking individually.
    Currently I’m taking Florisene again, I had stopped when my father had become ill, these have worked very well for both myself and my post menopausal mum. Both of us experienced less hairfall, regrowth, thicker/stronger individual hair strands. Worth researching for yourself, I’d definitely recommend. Best of luck hun, sending positive vibes. xx
     
  3. Lope36

    Lope36 New Member

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    The same thing with me, right down to the thinning eyebrows.

    I'm thinking my hairloss has more to do with my adrenal glands than my thyroid. I've been reading up on it and I think that explains why blood test normal for thyroid levels....just my guess.
     
  4. RumTruffle

    RumTruffle New Member

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    Thanks Sunshine21 - I haven’t heard of those supplements but I’ll check them out. Good to hear they have helped you and your mum!

    Thanks too Lope36 and sorry to hear that you have the same symptoms. Adrenal glands is interesting - I’ll look into that as well as it sounds a plausible cause.

    My hair loss seems to have sped up today with lots coming out when I run my fingers through my hair but I know regaine can cause initial shedding so hopefully it is just that.
     
  5. RoxyT

    RoxyT New Member

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    Hello, RumTruffle. You've been through a lot, and I'm sorry you--anf I all of us--are having to contend with inexplicable hair loss.

    I, too, am in diagnostic limbo between chronic TE and Alopecia Areata. Similarly, my hair loss adventure (now two years on) was preceded by major stressors.

    Here are some impressions based on my experience and reading:

    I long thought I just needed to figure our the trigger and get the right diagnosis. Once I had those, I'd avoid or correct the trigger and work with a trusted professional to evaluate and select treatments. I now believe that's over simplistic. For many of us, the processes leading to hair loss are complex, involving multiple interlinked factors, e.g., environment, hormones, nutrition, age, stressful events. Undoing that process, changing the dynamics bring about hairloss, are pribabl
     
  6. petey3

    petey3 Member

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    I've read that just because your GP says your thyroid results are "normal" does not mean they actually are. Your doctor may be going off the old recommended thyroid levels. Also, you could have sub clinical thyroid condition. Adrenals are all tied to that though and well. I have "sub clinical" thyroid levels but my adrenals are all out of whack so my naturopath thinks that if we fix that my thyroid levels may normalize.
     
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  7. RoxyT

    RoxyT New Member

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    Apologies for my partial message above! Not sure what happened. Anyway, my point is that reversing the process is probably more complicated than tweaking a single hormone or vitamin level. It's taken me a while to come to terms with this.

    Thyroid, adrenals, sex hormones, vitamin D, (which is a hormone btw) -- all of these and more influence each other.

    Petey3 raises an excellent point. All of my labs came back in the "normal" ranges. It wasn't until I began seeing a functional medicine physican, recently, who did a broader panel of tests, that I understood conventional Western medicine's idea of what's normal isn't healthy or optimal for some of us.

    I believe, at least for me, that hair loss is probably a symptom of body(person)-wide issues. That's why I'm exploring integrative and functional medicine approaches to try to become healthier overall. And if along the way, we find there is a simple answer to my seemmgly mysterious hair loss, I will be thrilled and will certainly share will you all!

    RumTruffle, you are definitely not alone. Please keep us posted on how you're doing.
     
    RumTruffle likes this.
  8. RumTruffle

    RumTruffle New Member

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    Hi Petey3 and RoxyT, thanks for the advice. I know during IVF they told me that they need a much lower level of thyroid than a normal threshold, so there may be something in that. Are either of you using minoxidil in the meantime? The second dermatologist said it is only for life with androgentic alopecia and there is the possibility of coming off it if the cause of hair loss is corrected in future....

    RoxyT to your point, I climb mountains, and I’m pretty sure if I quit my job and went and lived in the fresh air of the mountains for a few months then my hair loss might reverse! I’ve suspected my job, the building (carpet off-gassing), pollution, my antivirals and stress due to my dad.... So clean living with no stress might work. I may try it!
     

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