Acne.org Products
30 minutes ago, chicanery said:I got my thyroid tests back, TSH and T3 (or T4.. can't remember but she ensured me I only needed either T3 or T4 so it was one of them).
They both came back perfectly normal. I did my own research, and they are Definitely normal.
What should I get tested next? Do I beg my doctor to do some thyroid antibody tests, or should I be asking about things like lupus?
Hi, how is your hair? Thankfully, I am making some recovery on other effects...
I agree with your autoimmune line. Infact I think many effects, not just hair, are autoimmune possibly.
Did you try ANA test? C-RP? Pituitary hormones? There is a whole panel of autoimmune tests you can do.
5 minutes ago, fiksi said:Hi, how is your hair? Thankfully, I am making some recovery on other effects...I agree with your autoimmune line. Infact I think many effects, not just hair, are autoimmune possibly.
Did you try ANA test? C-RP? Pituitary hormones? There is a whole panel of autoimmune tests you can do.
My shedding is terrible - 400 hairs a day again :(. falling into a deep depression at university and I'm abroad this year, on a placement. My studies are suffering bc my mood is so low.
Hmm yeah true, there are lots of autoimmune tests. However, i am not seeing a specialist, just a general doctor. i have an appointment next week and want to ask her for the most important autoimmune ones, since she will not let me have more than a few.
26 minutes ago, chicanery said:My shedding is terrible - 400 hairs a day again :(. falling into a deep depression at university and I'm abroad this year, on a placement. My studies are suffering bc my mood is so low.Hmm yeah true, there are lots of autoimmune tests. However, i am not seeing a specialist, just a general doctor. i have an appointment next week and want to ask her for the most important autoimmune ones, since she will not let me have more than a few.
Ok...
ANA- definitely do ANA, it's not conclusive but mostly postive in lupus.
CRP- shows if there is infection/reaction in the body.
pituitary hormones- luteinising hormone and FSH(follicle stimulating hormone). Accutane is proven and known to affect pituitary gland.
Your condition might be alopecia, which is immune induced. Do you have any other symptoms at all? Does your basic expanded bloodwork show anything off at all?
6 hours ago, fiksi said:Ok...ANA- definitely do ANA, it's not conclusive but mostly postive in lupus.
CRP- shows if there is infection/reaction in the body.
pituitary hormones- luteinising hormone and FSH(follicle stimulating hormone). Accutane is proven and known to affect pituitary gland.
Your condition might be alopecia, which is immune induced. Do you have any other symptoms at all? Does your basic expanded bloodwork show anything off at all?
thanks very much!!! my doctor doesn't understand the accutane-autoimmune link at alllll, so i am praying she lets me get at least one of these done.
i agree - beginning to suspect i have diffuse alopecia areata. I don't think I have other signs of autoimmune problems, but the hair loss is only worsening.
2 hours ago, chicanery said:thanks very much!!! my doctor doesn't understand the accutane-autoimmune link at alllll, so i am praying she lets me get at least one of these done.i agree - beginning to suspect i have diffuse alopecia areata. I don't think I have other signs of autoimmune problems, but the hair loss is only worsening.
I'd do all, and pay if I have to to do more... we need to be our own doctors in this. I have developed a whole host of symptoms as well, some are resolving.
There are other immune tests you could do, but you need to start with sth.
Accutane also damages follicles, so there are more angles here.
I have an idea of what you could try, but you may not like it... this could have side effects as well. Logically, it might work- but probs best you do these tests first.
@chicaneryare you having any regrowth? Are you still using Rogaine? I'm noticing legitimate regrowth now but my hair is still shedding at a faster rate and is so thin. I hope you find some answers with the tests!
Also, I remember reading something a while back about doing liver/colon cleanses to help get the drug completely out of your system. I have no idea if this makes scientific sense.. has anyone thought of trying this?
8 hours ago, MeritNorth said:@chicaneryare you having any regrowth? Are you still using Rogaine? I'm noticing legitimate regrowth now but my hair is still shedding at a faster rate and is so thin. I hope you find some answers with the tests!Also, I remember reading something a while back about doing liver/colon cleanses to help get the drug completely out of your system. I have no idea if this makes scientific sense.. has anyone thought of trying this?
If analogy with A is taken, it is stored long term in body, but in multiple organs... I don't think any cleansing will remove it all, but eventually its reserves will be spent, if any(and repalced with new intake). You can't really flush liver completely.
I had 3 of these colon cleanses that were recommended and made no difference what so ever. I am on week 5 on minoxidil and shedding like crazy. I will give it one more month to see if it slows down...no regrowth from it yet...but I guess still early days. I also think this has to be some kind of autoimmune disease. It can not still be accutane. Going to get my hormones tested with an endocrinologist as recommended by my derm!
Also has anyone noticed good results still with minoxidil or still loosing regrowth from that also?
11 minutes ago, flowerpower123 said:I had 3 of these colon cleanses that were recommended and made no difference what so ever. I am on week 5 on minoxidil and shedding like crazy. I will give it one more month to see if it slows down...no regrowth from it yet...but I guess still early days. I also think this has to be some kind of autoimmune disease. It can not still be accutane. Going to get my hormones tested with an endocrinologist as recommended by my derm!
Also has anyone noticed good results still with minoxidil or still loosing regrowth from that also?
I also think it's autoimmune, but the catch here is accutane can cause autoimmune conditions and start them. It may not be in your body anymore, but the damage it has done, may not be reversible.
For instance, Crohn's disease, many get from accutane- is autoimmune as well. You stop accutane, but this may not reverse.
4 hours ago, flowerpower123 said:.
4 hours ago, flowerpower123 said:I had 3 of these colon cleanses that were recommended and made no difference what so ever. I am on week 5 on minoxidil and shedding like crazy. I will give it one more month to see if it slows down...no regrowth from it yet...but I guess still early days. I also think this has to be some kind of autoimmune disease. It can not still be accutane. Going to get my hormones tested with an endocrinologist as recommended by my derm!
Also has anyone noticed good results still with minoxidil or still loosing regrowth from that also?
I've been on Minoxidil for close to 1.5 years and I did not notice anyregrowth.
I just finished my 6 months post accutane. I can't tell whats happening anymore. Still shed but not as much, understand a portion of my hair is gone for good. I dont think its getting worst however, it looks like its trying to maintain what I have left. I also feel like I got a little more coverage as well or my hair looks thicker. the picture with the long hair is 2,3 months after the one with short hair. didnt use monoxidil at all. sorry for the unwashed hair, I dont wash my hair as much anymore, like twice or 3 times a week with water and shampoo every two weeks.
22 hours ago, Yar said:
I've been on Minoxidil for close to 1.5 years and I did not notice any regrowth.
did the minoxidil help with stopping the shedding at all? how come your still using minoxidil if its not helping with regrowth? (if you dont mind me asking 
)
21 hours ago, A1992 said:I just finished my 6 months post accutane. I can't tell whats happening anymore. Still shed but not as much, understand a portion of my hair is gone for good. I dont think its getting worst however, it looks like its trying to maintain what I have left. I also feel like I got a little more coverage as well or my hair looks thicker. the picture with the long hair is 2,3 months after the one with short hair. didnt use monoxidil at all. sorry for the unwashed hair, I dont wash my hair as much anymore, like twice or 3 times a week with water and shampoo every two weeks.
your hair looks great!
13 minutes ago, flowerpower123 said:did the minoxidil help with stopping the shedding at all? how come your still using minoxidil if its not helping with regrowth? (if you dont mind me asking
I still lose so much hair.
It's because I do not want to lose the 'minimum' gain that minoxidil has given to the top of my head.
1 hour ago, flowerpower123 said:How long does the initial really bad shedding from minoxidil last? Im
on week 3 of horrendous shed... thinking I should just stop now altogether
Don't stop!!! Mine lasted about 8-10 weeks, but then quickly returned to my normal "post-accutane level" shedding. The minoxidil shed terrified me too, but it really DOES stop. As everyone online says, if you stop minoxidil now, you will probably still keep shedding but won't experience the later benefits of minoxidil.
I would say forget about it, and choose to re-think the minoxidil situation at the end of march. Sounds ages away but will give your hair time to balance out after being exposed to the drug. Don't give up now xo
I know no one wants to talk about this, in this forum, but how is everyone's skin? any acne came back? I've been off accutane for 6 mos now, every few weeks a super tiny acne shows up on my face for a day or two, but it goes away fast. so in regard to my skin I havent had any issues so far. I was super oily before accutane, tons of acne on my face and back but now my skin feels normal. not too oily and not dry either very little (almost no) acne.
Hi no my skin is so bad now....but only took accutane for a few weeks but even after those few weeks it cleared it a bit! I always just think now I should have just finished the course like if I had of known stopping it wasn™t going to make a difference to my hair 
your so lucky your skin is good!
9 hours ago, flowerpower123 said:Hi no my skin is so bad now....but only took accutane for a few weeks but even after those few weeks it cleared it a bit! I always just think now I should have just finished the course like if I had of known stopping it wasn™t going to make a difference to my hair
I did a full 5 mos treatment, but I donno, I wouldnt recommend anyone to go on these drugs. messes too much with ur body, inside and out.
Karly123,
Thanks for asking! My holistic doc did a whole slew of tests (adrenal, thyroid, vitamins and minerals, amino acids). I won't get the results back till mid-February, so I'm just waiting to hear. I'm frustrated as hell because I've done so much work on myself and my health...I keep hearing the term "follicular sensitivity" in regards to androgenetic alopecia, testosterone, hormones, and hair loss. Has anyone studied this? I'm wondering if maybe the birth control I was on (for only 6 months!) two years ago, and then got off when my health started going to shit, has damaged some of my follicles...apparently there's no true test for sensitivity, either you have it or you don't. I wonder if this plays into anyone else's accutane-related hair loss. Hope everyone is doing well. Stay strong, guys!! XOXOX
Has anyones hair stopped shedding for a couple of days/weeks and then started again? Or has it literally been constant shed post accutane? Apparently chronic telogen effluvium (which I think we have) cycles in and out of shed then growth then shed again. Also has anyone dared get a haircut? Too scared to go to the hairdresser...its been over a year! But my hair is so limp and thin now I dont know what to do to help it
19 hours ago, flowerpower123 said:Has anyone™s hair stopped shedding for a couple of days/weeks and then started again? Or has it literally been constant shed post accutane? Apparently chronic telogen effluvium (which I think we have) cycles in and out of shed then growth then shed again. Also has anyone dared get a haircut? Too scared to go to the hairdresser...it™s been over a year! But my hair is so limp and thin now I don™t know what to do to help it ˜¹ï¸
Mine has literally been a constant shed. I mean, I've had some days where I've lost less e.g. 200 hairs, but I've never had a day of normal shedding.
I agree, we could probably be diagnosed with CTE. However, "CTE" isn't even a scientific diagnosis and is more a descriptive medical term. Meaning, something is causing that CTE (not to state the obvious) - I wish we knew what :(. CTE just means that too many hairs are regularly being pushed into the telogen phase - could be inflammatory/autoimmune, could be shrunken follicles that can't support a terminal hair....
Yeah, I forced myself to get my hair cut a few months ago - was very upsetting being in the hairdresser's, because it reminded me of how proud I always felt, sat there 3 years ago with my thick, luscious locks
Mine cycles. Today I had terrible scalp burning and tingling, which is a hallmark of CTE. My shedding had slowed from September to January, and kicked into high gear about three weeks ago. I keep wanting to believe our hair growth cycles will start to regulate and correct themselves...
1 hour ago, Undone515 said:Mine cycles. Today I had terrible scalp burning and tingling, which is a hallmark of CTE. My shedding had slowed from September to January, and kicked into high gear about three weeks ago. I keep wanting to believe our hair growth cycles will start to regulate and correct themselves...
Not to be negative, but I fear some accutane effects are potentially irreversible- especially those with autoimmune elements, and hair may have an autoimmune element. One guy has developed fibromyalgia, imagine, in 20s... lots of victims here, anything from gut to brain affected.
I'd guess, if within a year or so after the body doesn't fix itself, you may be looking long term problem. I am certain none of us would have taken this if warned properly before.