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My Story and Thoughts
Hello all, I’m a 25M and I’m suffering from post accutane hair loss. It has been 2 years since I stopped my 6 month course. I did another course before that around 6 years ago. The first course didn’t give me any side effects besides dry lips, so I thought it would be okay when my acne came back to take another course. Biggest mistake of my life.
During the second course I experienced dry hair and I felt that the thickness of my hair was slowly lower. But I attributed it to temporary effects from accutane. A few months after I stopped it, my thinning had become obvious under light. It was crazy to me because I didn’t have family history of balding. It was a diffuse thinning, with the hairline mostly unaffected, my hair had become curlier and dryer too. Sebum barely sat on my scalp when before I was super oily.
I waited it out for a few months but it only slightly improved, I decided to use minoxidil for a year after a dermatologist told me to give it a try. It helped a bit but it never gave me back my original hair. I stopped it a few months ago.
I finally got a biopsy taken two months ago. It diagnosed me with early signs of LPP or Lichen Planopilaris, a scarring alopecia. A trichologist I went to agrees that I have inflammation all across my scalp. I even checked my hormones to be absolutely sure. And my dht, testosterone are on the low ends. I’m 90% sure it’s not androgenic alopecia.
From all my research, here are my theories on what this hair loss is and why accutane triggered it.
Accutane changes the metabolism of vitamin A. Whether that’s through the retinoic receptors or through the production of retinoic acid in the body, accutane can disrupt this process. This in turn triggers changes to hair follicle growth. This connection between vitamin A metabolism and hair growth is established here:
https://etd.ohiolink.edu/apexprod/rws_etd/send_file/send?accession=osu1429824777&disposition=inline
If you scroll down there’s also a section on scarring alopecia and how vitamin A can regulate the progression of the disease. It’s not too far fetched to believed that vitamin A can somehow trigger the disease as well.
The author puts forth the theory that aldh1A1s inhibitors can lower the retinoic acid in tissue and counteract the toxic effects, maybe even make dormant the scarring alopecia.
There’s also another angle to consider, where you target the immune system and not the retinoic acid. Because i truly believe that the hair loss is immune system related. Maybe the trigger is retinoic acid. But the underlying mechanism for which you lose your hair is through inflammation and your immune system attacking the body. I have personal evidence of this as I’ve received an Lichen Planopilaris diagnosis. Some have had success with immunosuppressants or immunomodulators. But not much data exists on this unfortunately. Just anecdotes and old forum threads...
im happy I’ve been referred to this forum as maybe some people have come across similar lines of thought or have had success with the vitamin A detox diet. I’m thinking the aldh1A1s inhibitors might actually act like a vitamin A detox but I haven’t explored it too much
@are thank you for the reply. I hope we can figure this out together.
My first course if I remember correctly was 20mg twice a day, for six months. The second course was 40mg twice a day. I may be off though since I don’t remember the dosage too much. My diet before the first course was actually better. I was still living at home then and ate home cooked meals with very little fried food.
My diet during and before my second course was around the time I moved out and started eating out more often. So more fried food, less veggies. In terms of vitamin A, I actually think I’ve gotten less of it with my current diet than when I had my first course. I do think the lower dosage plus me being a teenager then contributed to a faster recovery. I hope the same applies to my current situation but the two years have made me pessimistic. It had actually taken two years before sebum and acne had gone back to normal for me after my first course. I didn’t start using supplements btw until I started losing my hair.
Measuring serum DHT is not necessarily very helpful. DHT is produced locally in the scalp and can be high there when it is normal in serum.
Going to mention the same as Arena, you are young, jump on low VA, you should be close to normal in a year or two. Just be patient with the journey.
Quote from tim on February 27, 2021, 12:21 amMeasuring serum DHT is not necessarily very helpful. DHT is produced locally in the scalp and can be high there when it is normal in serum.
Hi Tim. I did think there might be a slight chance it’s scalp DHT but I’m 90% sure it’s not androgenic alopecia. The reasons are 1) my hair loss started on accutane, 2) my scalp biopsy doesn’t show signs of androgenic alopecia or miniaturization, 3) my trichologist doesn’t see any miniaturization either, just a lot of inflammation, 4) and finally my family history doesn’t have much balding, if at all.
Of course I might be just a genetic anomaly or accutane kickstarted my hair loss. So just in case I’m taking saw palmetto and beta sitosterol everyday to inhibit some dht. I might consider propecia if my hair loss gets worse.
Quote from Arena on February 27, 2021, 5:28 am@franz Sounds like the second course you took was quite heavy! I only took 10mg a day for 6 months, and it destroyed me, so... I hope other users, 10x more knowledgeable than me, will answer you, and I would read a lot of the posts written by tim here regarding hair loss, you'll probably find them as interesting as I do.
I would also recommend reading Grant's books, and if you are up for it, try this low VA diet out. But it's a marathon, not a sprint. But you are young, so things might go faster for you 🙂
I didn’t think anything of it at the time but it’s taught me to cautious with medicine. Yes of course, I’m completely open to any advice. At this point I’ve learned that experiences from people who’ve been fighting this battle for a long time is really valuable.
Low VA is the plan. I do need to learn more about it to form a diet plan though. I’m not sure what things sneakily have vitamin A.
Quote from Orion on February 27, 2021, 8:15 amGoing to mention the same as Arena, you are young, jump on low VA, you should be close to normal in a year or two. Just be patient with the journey.
Hi Orion, thank you for the advice. I hope so, it’s so tiring thinking about this almost every single day. I miss not worrying about hair
Hi @are, @franz
Just for completeness; it is very important to not eat white rice exclusively without a source of the B vitamins. I still alternate between white and brown rice every few days.
Quote from Arena on February 28, 2021, 2:00 am@franz it does not sound like you are a genetic anomaly, it sounds like you have been poisoned by this freakshow of a drug. For tips on what to eat in the beginning, I would check out some of the posts @orion has made (plow through history), they are great! Although boring, I think @ggenereux2014’s diet is the safest approach in the beginning: beef, rice and black beans, some olive oil, but there are other safe foods as well, like white mushrooms
The drug really should be banned... it’s not even understood how it works, how’s it allowed to be used for cosmetic purposes like acne?
I’ll take a look at Orion’s posts and ggenereux2014’s diet. Is that in the books?
Quote from ggenereux on February 28, 2021, 5:42 amHi @are, @franz
Just for completeness; it is very important to not eat white rice exclusively without a source of the B vitamins. I still alternate between white and brown rice every few days.
Would it be okay to use a B vitamin supplement if I were to eat just white rice? Currently I’m supplementing vitamin D, vitamin B complex, Vitamin C, black seed oil, and saw palmetto/beta sitosterol for context’s sake.
Also, I just did an ANA exam, and I got a 1:160 titer. It looks like I have an auto immune issue which I think is connected to the hair loss. Maybe the lichen Planopilaris
