u/Zealousideal-Ad-8330

Anyone with diffuse hairloss and prominent perifollicular scaling/colars? Are those enough for scarring alopecia to be diagnosed? Biopsy show inflammation without scarring but is inconclusive. Second biopsy shows only sebderm.

Is it only scarring alopecia that can cause this or are there any other conditions? My scalp is mildly painful and sensitive, dry and oily in same time, no redness, no scarring signs, loss is absolutely diffuse. No response to many meds (nizoral, ciclopirox, zinc pyrithione, salycilic acid, topical steroids, ldn, doxycycline, hydroxy, fin, dut, oral minoxidil)
Anyone else?

Looking for anyone with those diagnoses to share their experience how pregnancy has affected their hair?
I am extremely upset because I am half-way into my pregnancy and my hairloss hasnt changed.
I previously have tried every treatment under the sun without much results and I thought pregnancy will at least give me a rest from this almost 7 years ongoing nightmare.
Even autoimmune hairloss sometimes stop during pregnancy, my hairloss is very agressive :(((

The post would be rather long than short.

First of all I cant believe I am actually coming to this sub with some sort of positive news, because since issues started when I was 22-23 yo, positive changes were mild and unsignificant despite the fact, that I tried A LOT.

About me: 30F, lean, no general weight issues, only normal +\-1-2kg accordingly to lifestyle changes. Symptomatic since 23 yo: severe hairloss, mild hirsutism, mild acne seborheic dermatitis, increased pores, uncontroled sex drive, polycystic ovaries, eczema, dermatitis, ibs with possible sibo, very anxious, terrible sleep, debilitating almost lethargic fatigue

Labs: high T, high DHEAS, borderline high but very fluctuating cortisol, everything else (shgb, thyroid, thyroid antibodies etc) was always normal. Glucose tolerance test - normal. Homa-ir - 0,9. Even tried cgm - never saw big hyperglicemia or hypo issues.

Put on bc since the beginning, improved a bit but nothing significant. My symptoms persisted through the years.

What I have tried so far: consistent sleep, quit night shift work, consistent work out and walking, started new relationship where I feel 0 stress and feel loved and supported, basically eliminated all possible stress. I tried myoinositol, berberine, magnesium, zinc, fish oil, nac etc. Tried birth control, spiro 50-150mg, fin 2,5mg, dut 0,5mg. Dht blockers wrecked me a lot, spiro - only better skin otherwise nothing. I worked with naturopath - improvement was very mild.

I was always interested to test for NCAH, but since I was on birth control It was not possible, but I have did a genetic testing and it revealed I am a CYP21a2 CAH carrier. For ncah you should have both genes affected but I have one, however I guess due to the fact my mutation is very severe I am somehow presenting clinically more as Ncah, that masks as pcos.

The last thing that made me feel like ,,enough, there is definitely something wrong” is the fact that when I tested my androgens while on birth control it came back high. Since I am not or very mildly insulin resistant, my ovaries are shut down by bc it made non-sense that despite all the list of interventions my androgens remain so high.

Year ago my endo suspected I am a good candidate for low dose dex, but before deciding should run many additional tests (did dexamethasone suppresion, 4 points cortisol saliva, adrenal ct and ovarian mri) - all were clear.

I started recently and… Its already working. I wake up easily despite having huge work load lately, after 9 hours of non stop working I have perfectly handled 2 work-outs and didnt feel bad or like passing out after it. No needs for nap. No brain fog. Ear sebderm first time in more than 7-8 years is gone my ears were always covered in greasy yellow flakes. I sleep deeply, dont have vivid dreams or anxious wake up. I am 30 yo and I feel like I am 20 again?

Side note: no defficiency, had low iron year ago, fixed that quickly by infusion and all my iron and vitamin D parameters stay perfect since than so its definitely not that.

I am also less angry and less on the edge, I have more patience (very important since I work with people)

First time in years I am finally hopeful. My worst symptom of all is hairloss and thinning. I am holding my fingers crossed that maybe now that I am on correct path something will finally work to stabilize or even regrow my hair a bit.

Any questions are welcome.

Hello, excuse me IA If I ended up in a wrong sub (I am a straight 30F woman not looking into transition but still looking for answers a lot)

I was diagnosed with pcos at the age of 23 due to clinical and biochemical hyperandrogenism, however I always felt I dont fit the classical pcos presentation.

Reasons why I felt that is that I never had symptoms of insulin resistance, then I have tested all my metabolical parameters including fasting and post sprandial glucose and insulin, counting homa-ir (which is normal, I am lean, homa-ir 0,9) and no insulin resistant supplemental, diet and medical treatment ever gave me results.

Important data to mention is before my symptoms exploded I also had an enormous ammount of chronic ongoing stress but even fixing this never resulted in me going to remission. I suspected ncah, but was put on bc and because of that acth test was and still is not a possibility, but I have performed genetic testing for ncah (various versions) and the findings are next:

Heterozygous CYP21A2 mutation (carrier)

1. Deletion

Deletion of exons 1, 3, and 4 of the CYP21A2 gene

2. Chimeric gene formation

CYP21A1P (pseudogene) fused with CYP21A2

Structure:

CYP21A1P exons 1–3

CYP21A2 exons 6–10

This leads to:

Loss of function of the 21-hydroxylase enzyme on that allele

Important note:

No second pathogenic variant in CYP21A2 was found

I strongly suspect my symptoms being driven strongly by adrenal dysregulation caused by this mutation, the one reason why I think so is that mild hirsutism that I had started to clear on oral steroids when I used them for another reason when no ammount of antiandrogens (spironolactone, antiandrogenic bc gave me that). My testosterone and dheas btw stays borderline high despite me performing everything under the sun to reduce the levels. I also suspect cortisol dysregulation, my 4 points salivary test came back normal but everytime I test blood in the morning it comes borderline high. I have visited all the endo’s in my country who could help me but was brushed off still as pcos.

I also have mild symptoms of mcas and some mild autoimmunity with positive ana but all other autoimmune panels cames back normal. I have exercise intolerance, terrible morning fatigue almost lethargy despite having no other issues (all other hormones and thyroid are completely normal), caffeine sensitivity and list goes on. One weird symptom that I have noticed is my libido tends to spike a lot during stress and I suspect that my adrenals shunts steroids toward androgen production during stress and that is the main cause of this issue.

My main question is if I am a good candidate for low dose steroids to possibly cover whatever is going on with my cortisol and its rhythm.

TIA if anyone responds and gives an insight.