38yo 2yr Diffuse Shedding Undiagnosed

Bobbie

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I'm dealing with a 2 yr diffuse shed. It started shortly after stopping nursing, increased while on yaz for 9 months (losing crown hair, scalp began to show). Was put on Yaz by well-meaning midwife as a bandaid for the hair loss I was experiencing, but the BCP was hell on my body: depression, fatigue, scalp pain, further hair loss. I stopped the pill last June and had a major Telogen Effluvium shed (scalp showing on crown and close to hairline). Also developed severe scalp issue, first thought to be sebhorreic dermatitis and 11 mos later thought to be psoriasis. Currently on a number of daily multi vitamins: b complex, zinc, slow release iron (for low ferritin), vit d (for low vit d levels), fish oil, tumeric, vit e, biotin, slow magnesium. I've developed chronic head and neck pain since being off yaz. My rheumatologist is convinced I have fibromalygia. My shed is better than last summer, but still lose 20-30 hairs when I comb through once with a wig comb. My hairs have gotten very thin and wispy (though they are still growing) and the roots seem very shallow in my scalp (if I itch ever so gently, they come off). Most of my current loss is on the sides of my head. I'm on prometrium 100mg and am still having my cycle. Both my estrogen and progesterone serum levels are appearing within normal ranges. Testosterone also is very normal. My TSH has been low normal this past year (.8) but antibody and ANA have come back negative. I've seen just about every type of specialist, tried every type of shampoo (sorry, didn't list them here) and am out of ideas. Does anyone have N idea of what may be going on or what direction I can take next? I've tried so hard to save my hair but am moving closer to the day I need to say goodbye to it. I have a wig on standby in my closet, but feel much more comfortable with my bio hair. Thanks so much for taking time to read this!!!
 

hairblues

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Do either of your parents have alopecia? if so what age did it start for them?

I feel like you went through a lot of changes in your body, child birth changes hormones temporarily and then birth control pills changes hormones, your on/off them..I don't know what promethium is so I cant comment.

Did you ever have a scalp biopsy or a firm diagnosis?

If you have androgenic alopecia the dermatologist should be able to diagnosis it via an exam and a biopsy if necessary.

I have low ferretin which several Doctors told me contributed to my hair loss or made it worse sooner--so getting my ferritin was important to all 3 of them and I worked on that with them via Iron dosage and blood tests..I also use topical spriolanactone and minxodiol...I had improvement and I think it was a combination of all these things. Mostly the minxodil I think though.

Are you taking spironolactone? They prescribe it orally often for women with hair loss IF its DHT related hair loss.

Make sure you don't have Areata since that is autoimmune and you already have several Autoimmune it sounds.
Once you have one autoimmune its much more likely for you to get several as opposed to someone who never had one..(not sure I am wording that right but I hope you understand what I mean)

Does your hair fall have 'white' bulbs at root or is it dark or color of your hair? White bulbs means usually Androgenic. You can google the bulb for alopecia.
 

Bobbie

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Thank you, hairblues, for your thoughtful response! Prometrium is oral micronized progesterone, so I am cycling despite being on supplemental progesterone.

I had a scalp biopsy last October and it was inconclusive. The report and dermatologist said that it could be Telogen Effluvium (from stress, hormone change, nutritional deficiencies) or it could be Androgenetic Alopecia. He then offered me propecia on the way out (which I declined since I am a premenopausal woman, also uncomfortable with the side effects).

Not taking spirolactone because Testosterone levels are fine and I had a bad reaction to the anti-androgenic BCP (zero energy , depression). Also avoiding monixidil because my scalp is super sensitive.

My hairs only occasionally have white bulbs; usually just have a brown tip.

I've had a number of autoimmune labs. All negative.
 

hairblues

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Thank you, hairblues, for your thoughtful response! Prometrium is oral micronized progesterone, so I am cycling despite being on supplemental progesterone.

I had a scalp biopsy last October and it was inconclusive. The report and dermatologist said that it could be Telogen Effluvium (from stress, hormone change, nutritional deficiencies) or it could be Androgenetic Alopecia. He then offered me propecia on the way out (which I declined since I am a premenopausal woman, also uncomfortable with the side effects).

Not taking spirolactone because Testosterone levels are fine and I had a bad reaction to the anti-androgenic BCP (zero energy , depression). Also avoiding monixidil because my scalp is super sensitive.

My hairs only occasionally have white bulbs; usually just have a brown tip.

I've had a number of autoimmune labs. All negative.

Do you have a copy of the derma pathologist report? or did the dermatologist just tell you his own 'opinion' based off it?
I would get a copy of the report and consult another Doctor who is experienced with Alopecia and the wide variety.
If you have brown bubs--thats not really Androgenic (as far as I know) white is the androgenic because white its the end of a hairs life cycle (normal to have some) and androgenic shorten the hairs life cycle--so most of the hair fall from androgenic is white bulbs.

If it is Telogen Effluvium you need to find the trigger..I doubt you have Areata (unless the report says you have lynchocytes--thats why you should look at it yourself if you have not already)

If it is Telogen Effluvium the good news is once you stop the trigger it should grow back because its not that the hair follicle is being damaged..I don't think or know if minoxidil would even help you if its Telogen Effluvium (honestly don't know) Minoxidil is a vasilattor I don't think you need a vassilator.
 

Tera82

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I'm dealing with a 2 yr diffuse shed. It started shortly after stopping nursing, increased while on yaz for 9 months (losing crown hair, scalp began to show). Was put on Yaz by well-meaning midwife as a bandaid for the hair loss I was experiencing, but the BCP was hell on my body: depression, fatigue, scalp pain, further hair loss. I stopped the pill last June and had a major Telogen Effluvium shed (scalp showing on crown and close to hairline). Also developed severe scalp issue, first thought to be sebhorreic dermatitis and 11 mos later thought to be psoriasis. Currently on a number of daily multi vitamins: b complex, zinc, slow release iron (for low ferritin), vit d (for low vit d levels), fish oil, tumeric, vit e, biotin, slow magnesium. I've developed chronic head and neck pain since being off yaz. My rheumatologist is convinced I have fibromalygia. My shed is better than last summer, but still lose 20-30 hairs when I comb through once with a wig comb. My hairs have gotten very thin and wispy (though they are still growing) and the roots seem very shallow in my scalp (if I itch ever so gently, they come off). Most of my current loss is on the sides of my head. I'm on prometrium 100mg and am still having my cycle. Both my estrogen and progesterone serum levels are appearing within normal ranges. Testosterone also is very normal. My TSH has been low normal this past year (.8) but antibody and ANA have come back negative. I've seen just about every type of specialist, tried every type of shampoo (sorry, didn't list them here) and am out of ideas. Does anyone have N idea of what may be going on or what direction I can take next? I've tried so hard to save my hair but am moving closer to the day I need to say goodbye to it. I have a wig on standby in my closet, but feel much more comfortable with my bio hair. Thanks so much for taking time to read this!!!
 

Tera82

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Hi everyone, my name is tera and it's my first day signing up to this forum.
I've been having thinning issues for about 10yrs now and I'm only 34. I have searched far and wide for a regime for thinning hair so that i too can have those long beautiful locks that all wemon wish to have and as of now am still un successful at it. I've gone as far as giving myself enemas thinking if I cleanse myself of the toxins my hair would have a better opportunity of growing, still nothing, but I have not given up. I've discovered a method that has apparently been around for a long time, and I haven't discovered until now. It's called PRP and the treatments in a Med Spa is $2,500 for two treatments. With the PRP method it consists of a blood draw from your own arm spun down into the centrifuge where then you take out your platelets and activate them with thrombin or calcium chloride and inject them into the targeted area on your scalp. Unfortunately I cannot afford a $2,500 treatments and decided that I'm going to do this treatments on myself. As being a former phlebotomist I'm going to draw my own blood spend it down in a centrifuge that I bought on eBay activate my plasma with thrombin that I bought on a medical website. My Centrifuge still hasn't come in the mail but as soon as it does I'll post and let anybody wondering how it went and update.
 

Bobbie

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Hi Tera, welcome! Please forgive me, I don't know anything about your medical training, but performing this procedure on yourself sounds incredibly risky. I work in the medical field in a lab and know how easily variables can change and things can go wrong. I also understand and have felt the deep desperation chronic hair loss can cause. What I would give to have this hell stop. Please consult with a medical professional who performs this procedure regularly. Understand that this is not a criticism but a genuine concern for your health.
 

hairblues

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I would just get it done professionally because How do you know how far to inject?
 
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