POSTED UNDER Accutane Reviews
(updated) Acne is gone, but so is my HAIR!!! - California
UPDATED FROM TJ Swan
STILL losing hair...
$150
Its been a year and half since my last posting, and my hair is STILL falling out. I swear I have half as much hair as I did two years ago. About 8 months ago my Doc. diagnosed me as Vitamin D deficient, so I went on prescription Vitamin D for 3 months, then to just OT 2000mg daily. I also added in a prenatal multivitamin because it has more iron and zinc than regular multi's (which is good for hair growth) Saw Palmetto which is supposed to block DHT in the scalp, Biotin, Cod Liver Oil, and switched to a Paleo diet. (Be careful about getting too much Vitamin B, you can develop tingling sensation in your legs). I also dont recommend Rogain. I stopped using it for a while because I didnt like how it made my hair look oily, and it seemed MORE hair fell out after stopping use than I was trying to grow back in the first place! Rogain makes your hair follicles go into a "growth phase" in the areas you are applying it to, and as soon as you stop applying it, your follicles automatically go dormant, and then shed. So unless you plan on using it for the rest of your life, you may be forcing follicles that wouldn't have otherwise gone dormant to do so. After all this, 8 months later, I have s o m e new growth, but certainly not enough to make up for all the loss I have experienced in the past 2 years. I now have to apply Toppix to my very thin areas so you cant see right through to my scalp.
Pinpointing the reason behind hair loss is a very difficult thing to diagnose, and because most Dr's dont consider it a health concern, they dont really care. Several Dr's shooed me out of their office and said what I'm going through it "normal". I'm sorry, but I cannot accept that answer, losing half your hair is not "normal"!!!!
Not really sure what there is left to do at this point but go to an Endocrinologist and have him take a closer look at my thyroid/hormones and see what he can put me on something to set my hormone level back to when I was 20!!
One thing I have discovered, is that my acne was likely attributed to dairy. Pretty disappointing to discover all I had to do was stop drinking milk, and instead ended up losing half my hair :-(
Pinpointing the reason behind hair loss is a very difficult thing to diagnose, and because most Dr's dont consider it a health concern, they dont really care. Several Dr's shooed me out of their office and said what I'm going through it "normal". I'm sorry, but I cannot accept that answer, losing half your hair is not "normal"!!!!
Not really sure what there is left to do at this point but go to an Endocrinologist and have him take a closer look at my thyroid/hormones and see what he can put me on something to set my hormone level back to when I was 20!!
One thing I have discovered, is that my acne was likely attributed to dairy. Pretty disappointing to discover all I had to do was stop drinking milk, and instead ended up losing half my hair :-(
TJ Swan's provider
UPDATED FROM TJ Swan
Three more months have gone by, and my acne still...
Three more months have gone by, and my acne still has not returned, however I do get a few pimples when I ovulate or menstruate. I just get very proactive with the salicylic acid and Epiduo.
Im happy to report, my hair is coming back - s l o w l y. I have been taking 10,000 mcg of Biotin, 500 mg of Black Current Oil, 45 mg Iron, switched to a high protein diet, and upgraded to men's Rogain.
Not sure if all this has contributed, or simply has been a matter of time. One thing for sure I will NOT be using Claravis again.
Im happy to report, my hair is coming back - s l o w l y. I have been taking 10,000 mcg of Biotin, 500 mg of Black Current Oil, 45 mg Iron, switched to a high protein diet, and upgraded to men's Rogain.
Not sure if all this has contributed, or simply has been a matter of time. One thing for sure I will NOT be using Claravis again.
Replies (1)
December 5, 2014
Did your hair grow back completely?
December 6, 2014
HECK NO!!!! Its been a year and half since my last posting, and my hair is STILL falling out. (I just posted an update see above).
December 9, 2014
I'm terribly sorry that you're going through a familiar path as my own. I never went on Rogaine or anything like that because I knew from research that it does exactly what you said. You end up losing even more hair once you stop. I didn't want that.
I have done TONS of herbal remedies on and off over the last 20 years. Yes, I'm still losing hair. I also was diagnosed as being vitamin D deficient last year. I'm still dealing with that.
If you do more research on Vitamin D, scientist have found a link to CURING hair loss with vitamin D. They're in the early stages of it but they've been able to grow hair on hairless mice with vitamin D. There may be a cure for baldness and hair loss one day. We'll see what the future holds.
I just had more blood work done and was referred to a rheumatologist since 2 things were flagged. One having to do with my liver enzymes yet I don't drink. Isn't that ironic. Did Accutane have something to do with that???
I've had my thyroid checked over and over and over. My mom is hypothyroid and thought maybe now it's kicked in. But I did just also find out that my mom was diagnosed as a false negative, so I may have to look further into that as well.
With all the research I've done on hairloss and Accutane, I know there has to be a link with some type of chemical alteration into our internal system. I also suffer form IBS, which I was diagnosed at 22 and was 2 years after discontinuing Accutaine. Could this have become worse due to Accutane, I'll never know. I may have Irritable Bowel Disease and now my liver is working overtime trying to get rid of the toxins in my body and that's why my liver enzyme's are up. The one thing I do know is my hairloss and health problems are all linked some way. I'm just trying to find exactly how!
Another thing I found out was about hair dye. I started graying at 16. I didn't start dying my hair til 28. I knew it would be pricey and didn't want that expense until I couldn't get away with gray anymore. So for the last 12 years I've been dying just my roots. I've never dyed my whole head of hair. I've only dyed the gray to match my existing natural color.
Well, over the last couple of years I've been going through MASSIVE hair fall again. That's when I went to a Trichologist and she said the hair dye was terrible for my scalp. In fact, I usually would have my scalp peel about a week or two after dying it. It was terrible and embarrassing. She spoke with my hairdresser and told her the percentage of chemicals to use and also to put a base on my scalp to keep it from having the dye touch my scalp. Even after all that, I'm still losing hair, my scalp still peels and now the dye job isn't as good because the base is on the hair roots and the dye won't adhere to it.
So I say all this to say, hair dye has over 5,000 toxins that go into your system. After years of use, hair dye can cause autoimmune disorders like MS, Lupus, Irritable Bowel Disease and others. So that's a HUGE reason for going to the rheumatologist. Basically when you have an autoimmune disorder your body attacks healthy cells in your body. So your hair follicles can actually be attacked and then you have hair loss.
Recently I started looking into other natural ways of coloring your hair and found out about Henna and Indigo. I found a TON of information out there and just experimented last week and this week with it. It worked out GREAT and I still have a little more experimentation to do before I get it down 100% but I sure feel good inside. One less irritation for my scalp and my internal system.
Henna is actually good for your hair and scalp too. You just have to get the henna that has no PPD's and no metallic salts. The ones that have those in them cause the same amount of harm to you as commercial hair dyes. So if you do color your hair you might want to look into that.
I refuse to except that this is happening to me. It isn't normal. You're absolutely RIGHT!!! I'm tired of the same people acting as though this is just normal and it's life. It's not normal to lose 536 hairs in one day! It's just not normal. And on ALL websites it says if you're losing more than the average 80-140 to go in and have it checked out because it could be due to bigger health problems. Then you go in and are told it's normal, you have more hair than me, you're fine.
If it's the last thing I do, I WILL figure this out and continue to tell people to NOT go on Accutane. That was the biggest regret of my life. A regret I've been living with for 21 years now ; (
I do want to add one more thing. The new Derm that I went to, for another skin problem other than acne, also spoke HIGHLY about Accutane. It frightens me that doctors are still prescribing this stuff and refuse to look at, listen or acknowledge all the problems people have went through because of it. The medical field is one I have a hard time trusting after going through all of this.
My own personal skin regimen is I wash my face with Obaji for oily skin and I also use Obaji's toner. At night I use Tretinoin Cream 0.025%. It's a generic for Retin-A, so it's quite cheaper. I've been using Obaji and Tretinoin Cream for 12 years. The Obaji is the first cleanser I've ever used that actually PH balances the skin.
I still have acne. I think it's just an unfortunate part of me. To think I've lost nearly 3/4's of my hair to have clear skin, and my skin is still not clear. I did a great job at permanently losing my hair!
My skin isn't as bad as it was but I think that has a lot more to do with me being 40 now. I don't think I'll ever "grow-out" of it but it's definitely not as bad as it was. The good news is, when I have no make up on people think I'm in my early 20's. I admit that's partially good genetics though. With makeup on people think I'm 28. Still not bad ; ) Now has the Tretinoin Cream had anything to do with the youthfulness??? Not sure. I never go in the sun, I'm very fair, so I have no wrinkles or lines like all my friends my age do.
I do wish I would have went on Retin-A like one internist told me to do when I was 19 and he found out I was on Accutane. I didn't listen to him and he warned me and told me that Retin-A would be a lot better for me. Hindsight unfortunately is so 20/20 it SUCKS!!!
Keep on searching for your answers. Never give up. Too many people do. I just can't and I won't!!! Maybe information as a collective will help others to be more informed and in some way we'll all help each other find a remedy to what we're all suffering from.
Good luck!!! : )
UPDATED FROM TJ Swan
So now I am about 4-5 months out post-Accutane. ...
So now I am about 4-5 months out post-Accutane. I've been taking 10,000mcg of Biotin, and applying Nioxin for women religiously. My hair is STILL falling out at the same rate it has been. I am starting to notice some new growth, but my hair is still falling out faster than it's growing in!!!
Replies (1)
March 6, 2013
I just joined this site to respond to your experience with Accutane. I had your same unfortunate outcome, as everyone else I've ever met has as well.
I was put on Accutane when it had only been on the market for 5 years, so it was relatively new. This was in 1993 at the age of 19. After battling years of severe cystic acne (acne started in 4th grade for me and by 15 it was on my face, chest and back), so I finally sought out professional help.
I was first put on Tetracycline with Benzac W5 and Erythromycin. Then Minocycline took the place of Tetracycline, and then Minocycline with birth control (even though I wasn't sexually active) and then my derm told me about Accutane. She gave it rave reviews but told me it "could" cause hair loss. But she said, the good news is you have so much hair that if you noticed any coming out you just stop treatment and it will stop falling out. I thought that was worth it being my hair was thicker than anyone's I'd ever met. Pretty much, when I'd wrap my fingers around my hair it would be if you take your thumb to your middle finger, and the first 1/2 of the nail was covered, that's how big my ponytail was. She had told me about a patient that went bald, which scared me, but she said she had really thin hair to begin with. For me I thought I had enough hair to take a chance and rid myself of acne that had plagued and scarred my face and body.
I was taking 40 mg and yes you have to have regular monthly blood work to make sure your liver is functioning. That's a HUGE warning sign to not take something if it can internally cause damage to your organs. But at 19, I just wanted clear skin.
My skin got better. It never was 100% clear. I still had, what is called "superficial acne". Little pimples that people get that clearisil can clear up. The cystic acne was gone. I had lost some hairs at my temples that use to frizz and now were gone and that area was tame. I thought it was a win-win! Not until a couple of months later did I notice my hair continuing to fall out and my pony tail getting smaller.
I notified my doctor and she said it is temporary and will regrow and not to be alarmed. After 6 months it continued to fall out. I called her again and she said after 6 months, it won't grow back. I was seriously freaking out. My ponytail ring went from what I stated above to now my thumb would go down past my middle fingers top bend.
I then contacted Roche and told them what was going on and said that my doctor said there's a rare chance you could suffer hair loss. Something like a 2% chance and the woman I talked to from Roche said to me, "We get thousands of complaints weekly about hair loss". I about DIED!!! Here I was, 20 yrs old and my hair was falling out and I had no way to stop it.
I went to doctors but they laughed at me because my hair was still thicker than most people but that wasn't the point. The point was, at this rate of it falling out and not growing back, I'll be bald within the next 10 years. NOT GOOD!!!
I had my thyroid checked, and nothing. I met a hairdresser who told me her daughter went bald from taking Tetracycline. She got into herbal remedies and put her on horsetail and got her to regrow her hair. I started on that when I started going to her. I finally was able to get my hair to stop. I may have grown back a small amount but I was more thrilled about it stopping.
It stayed pretty consistent after a few years and then I'd notice more hair fall, which then thinned my hair. At that point I had lost 1/2 of the hair I had and now, for the last 2 years I've lost another 1/3. Now when I wrap my fingers around my hair to make a ponytail it's only my thumb to my index finger knuckle. That's how much hair I've lost. The worst part is now you can see my scalp through my hair.
My hair was the one feature on me that EVERYONE has always complemented me on. It's everything to me. My hair makes me attractive. To lose the ONE feature that was literally where my beauty was is beyond words. I've been beyond sick inside for nearly 20 years now. I've told everyone not to EVER go on that medication. And everyone I know who's ever gone on it, has also lost hair. My friend from college went bald as well. At least he's a guy though. Still, he was upset about it.
But I'm lucky, because I saw lots of lawsuits on it for causing Gastrointestinal problems and such worse things that others have had to suffer than hair loss. It doesn't make my problem any better but I'm at least grateful because it could've been so much worse.
And, needless to say, 3-4 years later (at 23-24) my acne came back and worse than ever in area's I never had acne. Was it worth taking Accutane, most definitely NOT!!! I'm now 38, still have acne and 1/3 of the hair I once had.
I've been to dermatologists, gynecologists, trichiologists (hair and scalp specialist who also told me I don't have alopcia after doing a pull test and looking at my follicles under a microscope), and have done a fair amount of research on natural methods of vitamins and herbs. They seem to be the best thing. At time's I've been able to grow some hair but the last 2 years it's been a complete mystery.
Nioxin didn't work for me. I've tried everything. If I can give you any type of advice I'd say to stay away from shampoos that have Sodium Laurel Sulfate. That can damage your hair follicles among many other things. Try looking into more natural shampoos. Although I talk about my hair thickness in "ponytail" terms, I never wear a pony tale. My hair is too heavy and wouldn't stay up and always hurt my scalp. That was good because you can also get hairloss from tightly tying your hair back and having it pull on the follicle. That's called Traction Alopecia. So any pulling and tugging is not good.
There's so many things but I fear this is getting far too lengthy. Just know you're not alone. I hope this helps and if you'd like more info I guess just reply : )
Replies (1)