Persistent hair loss without a known cause (29F)
April 20, 2020 3:42 AM   Subscribe

I've been losing my hair for almost 3 years now. Went to all the doctors, had many tests done yet no cause was found. Were any of you ever dealing with something similar, or maybe know someone who did and managed to find out what was causing it and how to stop it?

I first noticed unusual thinning in summer 2017. Started taking supplements for hair growth and using stimulating shampoos almost immediately, but without any success. The thinning seems to be getting worse - overall I think I have about 80% less hair now than I did 3 years ago. If this continues then I'll be lucky if I'm not bald by 30 :(

Meanwhile I've consulted this with all the doctors I could think of:
- my GP (who did blood tests and all was fine),
- OB/GYN (who says it's not caused by the pill which I started taking about 5 years ago and had no problems with before),
- immunologist (who claims it's not caused by an allergy or anything similar and that I have no issues with immunity),
- endocrinologist (I was diagnosed with overactive thyroid about 4 years ago and have been taking oral thiamazole/methimazole since then - now I'm taking a very small dose every other day and the condition's been stable for more than 2 years now, so my Dr thinks there's no way the hair loss could be caused by the disease or the medication),
- trichologist (who wasn't really of much help, just inspected my scalp with a microscope and said I should be using baby shampoo - which I think is terrible advice - and suggested some questionable treatment that would most likely lead to more thinning before any improvement is visible),
- dermatologist (where I've been having weekly liquid nitrogen scalp treatments to increase blood circulation for about 2 months before they postponed my appointments due to covid-19 - no results so far either)
- and also a specialist at a hair clinique focusing on hair loss, where the Dr said I might have telogen effluvium and suggested continuing taking the oral supplements together with stimulating shampoos and possibly starting using topical minoxidil.

I know that 5% minoxidil might help with hair loss, but I've sort of considered it as the last resort due to the many possible side effects and the fact that I'd have to use it everyday for the rest of my life. Also there have been cases where people lost all their hair after applying minoxidil, and it's likely that it will make the thinning worse for the first few weeks, so I'd like to find some other solution.

Were any of you ever dealing with something similar and eventually found out the cause and a treatment that worked? My guess is that it could either be caused by hormonal imbalance or something similar (none of the doctors tested my hormone levels), or by the thyroid medication. If you have any other ideas on what the cause could be or what could help, please let me know. Thanks!
posted by U.N.Owen to Health & Fitness (21 answers total) 9 users marked this as a favorite
I wonder if you've ever had your ferritin (iron store) level tested? You can have low ferritin without being technically anemic, and it causes diffuse and often dramatic hair loss. Also, a quick google suggests there's a possible link between taking thiamazole and having low iron levels.

Hormonal hair loss (due to estrogen/testosterone imbalances) occurs in a the distinctive male pattern -- the crown/temples -- whereas hair loss for other reasons is more likely to be evenly distributed.

I don't blame you at all for not wanting to go down the minoxidil route. Before that last resort, I'd definitely test for ferritin if you haven't already, and other nutrients too: both vitamin D and folate are important for healthy hair follicles.
posted by Gamel at 5:38 AM on April 20, 2020 [3 favorites]

said I should be using baby shampoo - which I think is terrible advice

Hair loss has been associated with some popular hair care systems.

Some thinning was associated with a family members' hyperthyroidism, although not this much.

Do you mean you have 80% of your hair left, or that 80% of it is gone? If you have 80% of your hair left it's in line with my experience of telogen effluvium after an injury; it sucked but went away on its own.
posted by Rock 'em Sock 'em at 6:32 AM on April 20, 2020

I noticed hair thinning and was fortunate enough to see a dermatologist who specialized in hair loss (having experienced it herself). In my case, low ferritin was the primary culprit, although I also have a tendency toward androgen dominance. I took iron supplements, began using minoxidil, and also started taking spironolactone to balance out the androgens.
It worked. I have just about all my hair back. To be clear, I’m in my 40s, where it’s very normal and typical for hair to thin out a bit, but mine was getting worse than that, and I’m glad I finally got it addressed. Super glad I found a dermatologist locally who took it seriously.

I don’t agree with the hesitation to use minoxidil. It is true that you might not see an improvement until you get to the bottom of the health issue causing the problem (I didn’t, until my ferritin levels got above 60) but it will keep your hair follicles from dying, which is important while they’re still active. Minoxidil worked really well on me, and using it every day is no more inconvenient than brushing your teeth every day, and takes about the same amount of time.

If you have health conditions that contraindicated it, then that’s one thing, but even if you consider it a last resort, if you’ve lost 80% of your hair, then I’d say you’re there. You might also consider derma-rolling/microneedling either by itself or in combination with minoxidil. It also stimulates blood flow and has been proven to be efficacious in improving hair loss, via the same mechanism that it works on improving collagen levels in skin. (Same mechanism by which glycolic peels, laser, microdermabrasion etc. all work)

If you have androgenic alopecia and your ferritin levels are fine, and all your other levels are genuinely within the normal range, then that might be the way the cookie crumbles. But too many doctors will tell you that having a level that’s at the extreme range of normal means you’re “normal”, but that doesn’t mean your body agrees. My ferritin was 20 when I was finally tested, and that’s the low end of normal, but women should be at a minimum of 60 and ideally at least 100. You can also have normal hemoglobin with low ferritin (I did) and still experience the symptoms of anemia for that reason (I definitely did). That is the first step I would recommend.
posted by Autumnheart at 6:47 AM on April 20, 2020 [2 favorites]

Oh, I also wanted to add: this is absolutely not a short-term process. I first went to the dermatologist in the fall of 2016. It took at least 4 months to get my ferritin levels from 20-60 with daily supplements (and that’s actually pretty fast). It took 3-4 more months for visible growth from the minoxidil to show up, in the form of tons of little hairs that stick up all over your head. It took at least 2 years to grow those out long enough for them to basically contribute to my overall hair volume. And during that time, it takes several hair cycles for the follicles to improve if they’re going to. The more the follicles have miniaturized, the less likely they are to recover, which is why early intervention is important. But even now, going on 4 years later, I am still seeing improvement (eg. I shed a hair that is visibly thicker at the root than the end).

So don’t think of this in terms of “I’m going to shed some hair for a few weeks initially and I don’t want to go through that.” Like, there’s no “a few weeks” about ANY of this. You’re looking at years. But those years are going to go by either way.
posted by Autumnheart at 7:02 AM on April 20, 2020 [5 favorites]

Another vote for the minoxidil - the extra shedding is hair that would fall out anyway. It took about 2.5 months for mine to start regrowth, contributing to volume significantly after 6 more months (I've always had fast-growing hair, 2-3cm per month). 18 months on, I'm starting to come off the minoxidil as the underlying thyroid, hormone, vitamin D and insulin issues have been addressed.
posted by I claim sanctuary at 7:52 AM on April 20, 2020

Response by poster: Thanks for answering! The results of my last blood test at the GP (summer 2019) say the following:

Iron 16.7 ųmol/l (normal 6.6 - 28.0)
Ferritin 18 ųg/l (normal 11 - 307)
Vitamin D 91 nmol/l (normal 75 - 250)

There were about 20 more vitamins etc. tested and my GP said all results were fine. I have noticed the ferritin levels were a bit low (although she said perfectly normal for a woman my age), so I started using 20mg iron supplement once or twice a week, because I also read about how high levels of iron and ferritin may actually cause hair loss, so I didn't want to overdo it. If Autumnheart is right then probably I should start taking the supplement daily I guess? Also, at the time these tests were done, I've been taking a daily hair supplement containing i.a. 6mg of iron for about 6 months (I stopped shortly after I got the test results and switched to the 20mg iron supplement I'm taking now), so I guess without it my ferritin levels would be even lower?

Folate was also tested by my dermatologist last september and she also said the results were ok, although I don't have those on me now so I'm not sure what the exact results were.
posted by U.N.Owen at 8:44 AM on April 20, 2020

What kind of shampoo do you use? Living Proof is a very popular, extremely well-regraded brand that made my hair fall out like crazy, other people are experiencing tremendous hair loss with Deva Curl.
posted by kate blank at 9:01 AM on April 20, 2020 [1 favorite]

For what it's worth, I had pretty significant hair loss when my ferritin level was 23, and it was halted and reversed by taking lots of iron. As Autumnheart says, much higher levels than the bottom range of normal are needed to correct the problem -- the general wisdom is to aim for above 70.

I think this is good news! At least there's something definite to tackle. My preferred brand of iron supplement is Feosol, which I think comes in either 45 or 60mgs. And it's a good idea to take vitamin C -- either a supplement or orange juice -- at the same time, to aid absorption.
posted by Gamel at 9:05 AM on April 20, 2020 [1 favorite]

FWIW I have anemia and get very noticeable symptoms at levels below 30ish. I don’t have hair loss but the depression/fatigue, poor circulation, orthostatic hypotension, etc is all very prominent. I don’t see much improvement with most iron supplements but Floradix/Floravit liquid type has been very effective for me.
posted by 100kb at 9:36 AM on April 20, 2020 [1 favorite]

Have you had your calcium and paratharmone levels checked? I had some hair loss explained by parathyroid disease, which is diagnosed on levels of these two things. Often fully curable, once mine was taken care of the hair came back.
posted by cacao at 9:57 AM on April 20, 2020 [1 favorite]

Send me a msg if you have elevated calcium levels and I can share more about my experience with you.
posted by cacao at 9:57 AM on April 20, 2020

I experienced hair loss/thinning and other unpleasant symptoms when I had low ferritin. The low end of the “normal” range is very low, and lots of docs want it to be much higher, like at least 30, or even higher. Even when I got mine up to where yours is, he wanted me to continue with a daily supplement.
posted by hurdy gurdy girl at 10:51 AM on April 20, 2020

Did your OB/GYN screen for PCOS? I'm sorry I cannot offer any solutions. I can't imagine how this must feel.

Also agree with kate blank who mentioned Deva Curl.
posted by nathaole at 10:58 AM on April 20, 2020

My dermatologist said a ferritin level of 66 is the minimum for women who are experiencing hair loss.

High levels of iron may cause hair loss, but right now you may as well be hanging upside down in a castle in Transylvania. 18 is fuckin’ LOW. And yeah, this is good news because it’s genuinely a fixable problem that you can concretely measure.

I took the Nature Made brand of 65mg for about a year, which got me from 23 to 80, and now I take the Vitamin Shoppe store brand of Comfort Iron, which is about 25 mg. You only absorb about 1/3 of the milligrams in a supplement, so the Comfort Iron is a nice maintenance dose that’s about the daily requirement for a woman.
posted by Autumnheart at 11:17 AM on April 20, 2020

Nthing everyone suggesting this is a ferritin issue, and in my case my hair didn't start recovering until my ferritin was in the high-40s, I think. I've kind of just accepted that I probably won't have consistently nice hair unless my ferritin is close to the three-digit mark, which may mean long-term supplementation. If someone has a problem with me taking iron supplements, then so be it.
posted by blerghamot at 11:22 AM on April 20, 2020

You might also try a cast iron pan, I cook in one regularly as a mostly-vegetarian who dislikes spinach.
posted by fshgrl at 11:41 AM on April 20, 2020

I have thyroid disease, have suffered from hair loss a couple of times, and I have also been successfully treated a couple of times, too. Like you, I did the doctor rounds but from the sound of it I got luckier than you. My thyroid doctor sent me to a dermatologist who sent me to a very prominent women's clinic.

The doctor at the clinic took one look at me, and said, "I bet your iron's way too low." Like Op, it was in the low teens. For treatment, the doctor prescribed 325 mg/daily for about four months. By prescription, this is one pill; over the counter, it's something like six pills. Note that the reason I was only on it for four months is because my iron levels went from exceedingly low to the very high end of normal in that time, and we didn't want to exceed the upper boundary because it can cause other health problems.

The nurse at the women's clinic (and her daughter, also a nurse) as well as the dermatologist I saw all recommended high doses of biotin, too, which I took for a long time. During my first period of hair loss, I noticed my hair growing longer much more quickly, but it didn't fill in thin spots or stop the shedding. The women's clinic doctor said if the iron didn't work I could come in for cortisone shots on my scalp. I never did this but that doctor's nurse (and her daughter the nurse) had both used it successfully.

Nowadays, I have a running prescription for 365/mg iron and typically I take it a few times a week, but because it's become clear that my iron levels dip with enormous ease, I have requested more frequent testing (outside of doctor's visits) just to keep an eye on it, which has been very informative.

More recently, I was under horrible stress for a very long period, and ending up losing all sorts of hair again. My dermatologist is quite good and she prescribed 100 mg of spironolactone/2x a day. (Note that my GP gave me a filler prescription of only 25mg/daily recently, and I didn't notice at first, and then I started losing a LOT more hair. A switch back immediately repaired it.)

A few words about minoxidil. I know it works beautifully for some people, but, I, too, was reluctant to go on it. My fear was partially that at some point I'd be traveling and would run out, and all the gains you get from minoxidil are lost once you stop using it, which made it seem like a very superficial solution. That said, at some point I did try it for a week or so. I thought it was a horror story.

If you have thick(ish?) dark hair, which doesn't show damage, I'm sure, again, it works great for many. But my hair is very light, and even at its best is extremely fine and thin. Minoxidil, like many, many, far too many, derm treatments intended for the scalp or skin is mixed with denatured alcohol because, I gather, it's a cheap and easy solvent. But it's also a known irritant with drying effects, which can cause itching or swelling on your scalp, and swelling can (I think, but don't know) be a contributing factor in hair loss too.

Long story short, unless they've changed up the formulas, the main ingredient in minoxidil is terrible for skin. In the case of minoxidil and my very fine hair it started drying out my hair such that within a week it was frizzy, looked broken, and quickly got more fragile. Putting it on daily also made my hair look, or act dirty, which meant I had to shampoo more often. Long story short, I gave it up very quickly.

I've wondered a lot about the scandals with Wen shampoo and now Diva. One obvious explanation of all the hair loss claims, which I haven't seen addressed, is they are posibly using more commonly allergenic fragrances in their formulas, which can, again, irritate the scalp, causing swelling, and hair loss. Depending on the ingredient mix and texture of the shampoos, it can also block some of your hair follicles, which is a good way to prevent hair growth too.

If I were you, I would be very wary of putting anything with alcohol on my scalp, but that's a cost/benefit ratio with minoxidil depending on hair type. I would also strongly urge you to find (one of the very few) unscented shampoos, and use that for a while. You want your scalp to be healthy, and perfume is the single most likely source of allergy in cosmetic treatments of all kinds.

Finally, genetics play a role, hair type plays a role, and past experience creates a pattern for a body under stress. If you lose your hair once, it will likely happen again, though maybe not for years. So the more you know, the better you can catch it and stop it.

I'm seriously angry on your behalf that none of your doctors was informed about the iron connection. I'd be very surprised if that's not all or most of your problem, and many of the other commenters here seem to agree with me.

So have hope.
posted by Puppetry for Privacy at 12:38 PM on April 20, 2020

Everyone's covered the ferritin. Your vitamin D isn't anything to write home about either. I had similar results and ended up on 6,000 units a day until it hit 200 or so (and the maintenance dose so far is 4,000, I'm just rubbish at absorbing vitamin D).

Re: minoxidil irritating the scalp, my dermatologist started me on two weeks of hormonal topical treatment (prednisole, estradiol and salicylic acid), then alternated two days of it with five days of minoxidil until the bottle ran out. It nicely calmed down my scalp and got it used to minoxidil, and weekly hair/scalp oiling sessions took care of the dryness. My dermatologist also recommended using the 5% (male dose) once a day rather than 2% twice daily.
posted by I claim sanctuary at 1:02 PM on April 20, 2020 [1 favorite]

Response by poster: Thanks everyone! Now I'm actually hoping it's low ferritin that's been causing this and that it's still not too late to regrow at least some of the hair I lost. Oh well.

For those who asked, I'm currently using Nioxin System 2 shampoo, conditioner and hair treatment, and sometimes I use a shampoo with caffeine called Plantur39 that's supposed to help with hair growth as well. I don't live in the US so I'm not sure if these are available there. My dermatologist also recommended Vichy Dercos but I haven't tried that one yet.

I'm also using a biotin supplement (about 100ųg a day), and I'll try to increase my vitamin D intake as well.

My calcium levels should be okay too (2.47 mmol/l, normal should be 2.00 - 2.65), but I'm not sure if I've ever had my parathormone levels checked. I will ask about that at my next endocrinology checkup.

I will also do some more research on minoxidil and maybe I'll give it a try, but my hair is also very fine and thin now so I'm still a bit worried about that.

And yeah I meant I lost about 80% of my hair. Maybe a bit less but surely at least half of the previous volume is gone and the hair that's left is mostly brittle and dry even though I'm doing my best to take good care of it.

I don't think I'll be able to get an appointment to check my ferritin levels anytime soon because of the restrictions implemented in my country at the moment, but I think I'll try taking 60mg of iron supplements a day and see what happens.
posted by U.N.Owen at 1:23 PM on April 20, 2020

Note: Iron can be rough on your digestive system. Try SlowFe or similar. I ended up doing infusions. My iron is back up (didn't help the hair issue), my vitamins and hormones are normal. We still don't know why my hair is coming out. Sometimes, unfortunately, there isn't a known cause or the cause isn't something that can be changed. But it's worth trying to get your iron up anyway as otherwise it can cause fatigue and other issues.
posted by Crystalinne at 2:13 PM on April 20, 2020

Yeah, the normal range for ferritin is WAY too broad and just shows where most of the population falls with their ferritin levels. Ideally, your ferritin levels should be above 50. Doctors don't acknowledge this and it's deeply, terribly frustrating.

Take iron daily. There is gentle iron that you can buy to prevent digestive problems.

My ferritin was 3. I didn't realize that my hair was thin until it grew back. It took me a year to really recover, so be patient.

Hang in there.
posted by Amy93 at 7:38 PM on April 20, 2020

« Older Tell me about your experiences taking medication...   |   Please explain this 43-year-old joke to me Newer »
This thread is closed to new comments.