Yep my hair is dry, brittle and thinning on my head.

body hair has altered, on my upper back and shoulders I now have hair popping up - I shave them off in summer as they are unsightly!

My guess is that its hormone related. I can't think what else it would be.

9 hours ago, TrueJustice said:

Yep my hair is dry, brittle and thinning on my head.

body hair has altered, on my upper back and shoulders I now have hair popping up - I shave them off in summer as they are unsightly!

My guess is that its hormone related. I can't think what else it would be.

You do realise that you get hair on your back/upper shoulders as you get older right? Don't be so quick to blame every change in your body on accutane.

1 hour ago, Justdry said:

10 hours ago, TrueJustice said:

Yep my hair is dry, brittle and thinning on my head.

body hair has altered, on my upper back and shoulders I now have hair popping up - I shave them off in summer as they are unsightly!

My guess is that its hormone related. I can't think what else it would be.

You do realise that you get hair on your back/upper shoulders as you get older right? Don't be so quick to blame every change in your body on accutane.

Fair point but with me it sprang up over night and this is years ago in my late twenties. I used to think about it a lot in relation to the aging theory with tane - the telomere shortening.
You often see older men with hairy back and shoulders, sometimes young men too but mostly older men.

Alongside the eye floaters actually which you could also argue isn't due to tane. But does the amount of tane victims mentioning floaters seem coincidental or is there a definite link back to Accutane?

I tend to think it's not coincidental at all - same as the change in hair....,I'll bet my bottom dollar on it actually!!

7 hours ago, Justdry said:

You do realise that you get hair on your back/upper shoulders as you get older right? Don't be so quick to blame every change in your body on accutane.

Hairyness have been atleast one of my biggest issues if not the biggest after Accutane and I would have "hoped" for similiar experiences. It started around the time when I was stopping my treatment and already in my early teens my chest, belly, instep, toes, upper arms, back of hands etc. had long, thick hairs growing out. I don't have dense hair growth, but the ones I have are very long and thick. It doesn't feel natural at all to me. For examble I have these hairs growing up to my knuckles, they grow probably up to 2 cm, but I trim the so they don't look so unnatural, but you still can see the thickness. I haven't seen anyone else with such hair. In contrast my brother doesn't even have hairy arms.
Wierd thing is that I don't look or feel like I have high androgen levels and actually I barely have any dht (cause for bodyhair, right?). After Accutane my skin has been this dry and fragile piece of shit and ~half of my symptoms seem to link to it imo.

11 hours ago, TrueJustice said:

Fair point but with me it sprang up over night and this is years ago in my late twenties. I used to think about it a lot in relation to the aging theory with tane - the telomere shortening.
You often see older men with hairy back and shoulders, sometimes young men too but mostly older men.

Alongside the eye floaters actually which you could also argue isn't due to tane. But does the amount of tane victims mentioning floaters seem coincidental or is there a definite link back to Accutane?

I tend to think it's not coincidental at all - same as the change in hair....,I'll bet my bottom dollar on it actually!!

I feel like I read an article somewhere about unwanted hair growth being caused by some form of insulin resistance... but I think it was a women's health article... idk maybe it's something similar with us?

On 29/03/2017 at 9:21 AM, tanedout said:

There is absolutely no doubt that the liver and bile flow are factors in all this, and this ties in with gut health and so on - its all related, its just as yet unclear as to exactly what the root cause is.

DNA profiling probably offers one of the best chances to try and find a trend amongst people who are suffering from accutane sides, PFS, and other related conditions. Mario Vitalli has been collecting 23andme data from sufferers, including myself, and has been using software to look for trends.

So far he has established that there is a trend amongst sufferers which appears to be with the sulfation pathway. This is not only a major detox pathway, but is also needed for proper bile acid metabolism.

Information on one of the defective genes I have is below, and no surprise to see associations wth cholostasis - this could also tie in with that 8 tips for accutane recovery video on youtube which specifically mentions treating colostatis using TUDCA and chinese bitters for bile flow.

http://www.malacards.org/search/results/ATP8B1

Everyone should get a 23andme DNA test done, and provide the data to @mariovitali. It's cheap test and it's worth it. Anyone who has the data already, please provide this to Mario.

This PDF explains Liver Detox pathways extremely well, and includes suggested supplements, but specifically looking at sulfation;

http://balancedconcepts.net/liver_phases_detox_paths.pdf

Also the abovepossibly goes some way to explaining why cortisol is usually so high post-tane. My cortisol was right at the top of the range, so if the pathway that neutralises this hormone is compromised then that could be a factor.

Wow, I also have the sulpher pathway mutation. My CBS C699t is homozygous.

I'll get my results over to mariovitali.

Here are mine. I had already posted them but I don't think they were taken into account for what we're looking right now. I definitely hold the belief that the reason we are permanently affected while many aren't, has to do with genes and methylation pathways.

22 minutes ago, Kynarr said:

CYP2D6 S486T

rs1135840

GG

+/+

They are looking into this as of this very month.

Effects of Isotretinoin on CYP2D6 Activity

https://clinicaltrials.gov/ct2/show/NCT03076021
Specific Aim: To investigate if isotretinoin (13-cis-retinoic acid) administration decreases CYP2D6 activity in adolescent patients.

Cytochrome P450 2D6is anenzymethat in humans is encoded by theCYP2D6gene. CYP2D6 is primarily expressed in theliver. It is also highly expressed in areas of thecentral nervous system, including thesubstantia nigra.

CYP2D6, a member of thecytochrome P450mixed-function oxidase system, is one of the most important enzymes involved in themetabolismofxenobioticsin the body. In particular, CYP2D6 is responsible for the metabolism andeliminationof approximately 25% of clinically used drugs, via the addition or removal of certainfunctional groups specifically,hydroxylation,demethylation, anddealkylation.^[3]Other drugs, known asprodrugs, are activated by the action of CYP2D6. This enzyme also metabolizes several endogenous substances, such ashydroxytryptamines,neurosteroids, and bothm-tyramineandp-tyraminewhich CYP2D6 metabolizes intodopaminein the brain and liver.^[3][4]

There is considerable variation in the efficiency and amount of CYP2D6 enzyme produced between individuals. Hence for drugs that are metabolized by CYP2D6 (that is, are CYP2D6substrates), certain individuals will eliminate these drugs quickly (ultrarapid metabolizers) while others slowly (poor metabolizers). If a drug is metabolized too quickly, it may decrease the drug'sefficacywhile if the drug is metabolized too slowly, toxicity may result.^[5]Hence the dose of the drug may have to be adjusted to take into account of the speed at which it is metabolized by CYP2D6.^[6]

3 minutes ago, guitarman01 said:

They are looking into this as of this very month.

Effects of Isotretinoin on CYP2D6 Activity

https://clinicaltrials.gov/ct2/show/NCT03076021
Specific Aim: To investigate if isotretinoin (13-cis-retinoic acid) administration decreases CYP2D6 activity in adolescent patients.

Cytochrome P450 2D6is anenzymethat in humans is encoded by theCYP2D6gene. CYP2D6 is primarily expressed in theliver. It is also highly expressed in areas of thecentral nervous system, including thesubstantia nigra.

CYP2D6, a member of thecytochrome P450mixed-function oxidase system, is one of the most important enzymes involved in themetabolismofxenobioticsin the body. In particular, CYP2D6 is responsible for the metabolism andeliminationof approximately 25% of clinically used drugs, via the addition or removal of certainfunctional groups specifically,hydroxylation,demethylation, anddealkylation.^[3]Other drugs, known asprodrugs, are activated by the action of CYP2D6. This enzyme also metabolizes several endogenous substances, such ashydroxytryptamines,neurosteroids, and bothm-tyramineandp-tyraminewhich CYP2D6 metabolizes intodopaminein the brain and liver.^[3][4]

There is considerable variation in the efficiency and amount of CYP2D6 enzyme produced between individuals. Hence for drugs that are metabolized by CYP2D6 (that is, are CYP2D6substrates), certain individuals will eliminate these drugs quickly (ultrarapid metabolizers) while others slowly (poor metabolizers). If a drug is metabolized too quickly, it may decrease the drug'sefficacywhile if the drug is metabolized too slowly, toxicity may result.^[5]Hence the dose of the drug may have to be adjusted to take into account of the speed at which it is metabolized by CYP2D6.^[6]

Hang on a second, if this is even possible why do way too many doctors dismiss our problems when we tell them what we're going through??
Surely the info above is commonly known in the medical profession?

Can someone please explain this before I stick a pen in someone's eye.

48 minutes ago, Kynarr said:

Here are mine. I had already posted them but I don't think they were taken into account for what we're looking right now. I definitely hold the belief that the reason we are permanently affected while many aren't, has to do with genes and methylation pathways.

Gene & Variation	rsID	Alleles	Result
COMT V158M	rs4680	AG	+/-
COMT H62H	rs4633	CT	+/-
COMT P199P	rs769224	GG	-/-
VDR Bsm	rs1544410	CT	+/-
VDR Taq	rs731236	AG	+/-
MAO-A R297R	rs6323	TT	+/+
ACAT1-02	rs3741049	GG	-/-
MTHFR C677T	rs1801133	GG	-/-
MTHFR 03 P39P	rs2066470	GG	-/-
MTHFR A1298C	rs1801131	TT	-/-
MTR A2756G	rs1805087	AA	-/-
MTRR A66G	rs1801394	AG	+/-
MTRR H595Y	rs10380	__	no call
MTRR K350A	rs162036	AA	-/-
MTRR R415T	rs2287780	__	no call
MTRR A664A	rs1802059	AG	+/-
BHMT-02	rs567754	TT	+/+
BHMT-04	rs617219	__	no call
BHMT-08	rs651852	TT	+/+
AHCY-01	rs819147	TT	-/-
AHCY-02	rs819134	__	no call
AHCY-19	rs819171	TT	-/-
CBS C699T	rs234706	AA	+/+
CBS A360A	rs1801181	--	no call
CBS N212N	rs2298758	__	no call
SHMT1 C1420T	rs1979277	__	no call

Gene & Variation	rsID	Alleles	Result
CYP1A1*2C A4889G	rs1048943	TT	-/-
CYP1A1 m3 T3205C	rs4986883	TT	-/-
CYP1A1 C2453A	rs1799814	GG	-/-
CYP1A2 164A>C	rs762551	AC	+/-
CYP1B1 L432V	rs1056836	CG	+/-
CYP1B1 N453S	rs1800440	CT	+/-
CYP1B1 R48G	rs10012	CG	+/-
CYP2A6*2 1799T>A	rs1801272	AA	-/-
CYP2A6*20	rs28399444	II	-/-
CYP2C9*2 C430T	rs1799853	CC	-/-
CYP2C9*3 A1075C	rs1057910	AA	-/-
CYP2C19*17	rs12248560	CT	+/-
CYP2D6 S486T	rs1135840	GG	+/+
CYP2D6 100C>T	rs1065852	GG	-/-
CYP2D6 2850C>T	rs16947	AG	+/-
CYP2E1*1B 9896C>G	rs2070676	CC	-/-
CYP2E1*1B 10023G>A	rs55897648	GG	-/-
CYP2E1*4 4768G>A	rs6413419	GG	-/-
CYP3A4*1B	rs2740574	TT	-/-
CYP3A4*2 S222P	rs55785340	AA	-/-
CYP3A4*3 M445T	rs4986910	AA	-/-
CYP3A4*16 T185S	rs12721627	GG	-/-
GSTP1 I105V	rs1695	AA	-/-
GSTP1 A114V	rs1138272	CC	-/-
SOD2 A16V	rs4880	AG	+/-
NAT1 R187Q	rs4986782	GG	-/-
NAT1 R64W	rs1805158	CC	-/-
NAT2 I114T	rs1801280	CT	+/-
NAT2 R197Q	rs1799930	AG	+/-
NAT2 G286E	rs1799931	GG	-/-
NAT2 R64Q	rs1801279	GG	-/-
NAT2 K268R	rs1208	AG	+/-

Gene	Result
GSTT1	Present

Lets just assume it's a methylation problem, you've got nothing to lose!

I didn't have any luck on Methylfolate, did you??

Can someone please simplify this so it is easier on the eyes...

Its easy, take either Zinc, Iodine or Methylfolate!!

Test all you want but that's what you'll end up taking regardless....

10 minutes ago, TrueJustice said:

Its easy, take either Zinc, Iodine or Methylfolate!!

Test all you want but that's what you'll end up taking regardless....

Have you tried all of these?

On and off over the years yes!!

And yet here I am still a Roaccutane victim.....

Don't let me put you off though, you might respond really well - who's to say!

Not that it matters but it certainly makes me wonder....

My symptoms started out with just being tired and kind of out of it WHILE I was still taking the pill and then I woke up one morning for school and had kind of a mood change and felt extremely angry so I stopped taking the drug immediately and since then things have just gotten progressively worse. I wonder why some of us get these side effects after being off the drug but then there's me who got sides effects ON the drug from taking two 30 mg pills a day for not even two months...

so confusing

17 hours ago, Pido said:

Hairyness have been atleast one of my biggest issues if not the biggest after Accutane and I would have "hoped" for similiar experiences. It started around the time when I was stopping my treatment and already in my early teens my chest, belly, instep, toes, upper arms, back of hands etc. had long, thick hairs growing out. I don't have dense hair growth, but the ones I have are very long and thick. It doesn't feel natural at all to me. For examble I have these hairs growing up to my knuckles, they grow probably up to 2 cm, but I trim the so they don't look so unnatural, but you still can see the thickness. I haven't seen anyone else with such hair. In contrast my brother doesn't even have hairy arms.
Wierd thing is that I don't look or feel like I have high androgen levels and actually I barely have any dht (cause for bodyhair, right?). After Accutane my skin has been this dry and fragile piece of shit and ~half of my symptoms seem to link to it imo.

Haven't been tested for it but also felt like mine was the DHT issue - been supplementing creatine for 2 weeks and my skin is in the best place it's been for a while. Still not producing oil but it doesn't seem as dry as it did.

I lifted for 5 years from when i stopped accutane up until a year ago. My dry skin was manageable throughout the time i lifted, when i stopped last year my skin become so much more dry that it's been a struggle since. Creatine has taken it back to how it was whilst lifting. You should give it a shot, should notice a difference after a couple of weeks if it's a DHT issue.

I just wonder what the long term solution is.

@KynarrI'd get the raw data over to Mario, just the text file you download from 23andme. It's anonymous. I don't know exactly all the defective genes in the 'profile' of sufferers, but the more data he has the better!

6 hours ago, TrueJustice said:

Hang on a second, if this is even possible why do way too many doctors dismiss our problems when we tell them what we're going through??
Surely the info above is commonly known in the medical profession?

Can someone please explain this before I stick a pen in someone's eye.
Lets just assume it's a methylation problem, you've got nothing to lose!

I didn't have any luck on Methylfolate, did you??

It's so much more than taking just methylofolate though isn't it, that's like saying you just need petrol to make a car engine run, but there are many other co-factors that need to be in place, in the correct quantities, and in the right order.

Methylation protocols are difficult to follow - I've had some success with lessening brain fog, but I always hit issues with some of the required co-factors, e.g.adb12 gives me really bad fatigue (I mean really bad, like I'm exhausted when I wake up, and have to have naps all the time), and methylfolate gives me chest pains after a while), but these are probably things that could be overcome by adding the correct amounts of the required co-factors, it's experimentation.

Have a read through this (a few times..) it explains things well, but it's not easy and just taking a random handful of some of the required supplements won't get you anywhere;

http://howirecovered.com/active-b12-therapy-faq/

1 hour ago, tanedout said:

@KynarrI'd get the raw data over to Mario, just the text file you download from 23andme. It's anonymous. I don't know exactly all the defective genes in the 'profile' of sufferers, but the more data he has the better!

It's so much more than taking just methylofolate though isn't it, that's like saying you just need petrol to make a car engine run, but there are many other co-factors that need to be in place, in the correct quantities, and in the right order.

Methylation protocols are difficult to follow - I've had some success with lessening brain fog, but I always hit issues with some of the required co-factors, e.g.adb12 gives me really bad fatigue (I mean really bad, like I'm exhausted when I wake up, and have to have naps all the time), and methylfolate gives me chest pains after a while), but these are probably things that could be overcome by adding the correct amounts of the required co-factors, it's experimentation.

Have a read through this (a few times..) it explains things well, but it's not easy and just taking a random handful of some of the required supplements won't get you anywhere;

http://howirecovered.com/active-b12-therapy-faq/

Cheers,

I'll have a read of it, admittedly I know nothing other than taking Methylfolate.

Could spend the next 6 months going down the folate path only to end up wasting my time....we'll see I guess.

3 hours ago, Justdry said:

Haven't been tested for it but also felt like mine was the DHT issue - been supplementing creatine for 2 weeks and my skin is in the best place it's been for a while. Still not producing oil but it doesn't seem as dry as it did.

I lifted for 5 years from when i stopped accutane up until a year ago. My dry skin was manageable throughout the time i lifted, when i stopped last year my skin become so much more dry that it's been a struggle since. Creatine has taken it back to how it was whilst lifting. You should give it a shot, should notice a difference after a couple of weeks if it's a DHT issue.

I just wonder what the long term solution is.

Maybe increasing DHT with creatine could help me with dry skin, but when I used it the first thing I noticed was increased balding. I don't want to play with it if I will end up bald and possible still have the dryness.

28 minutes ago, Pido said:

Maybe increasing DHT with creatine could help me with dry skin, but when I used it the first thing I noticed was increased balding. I don't want to play with it if I will end up bald and possible still have the dryness.

I can't imagine that - if we do have low levels of DHT - supplementing with creatine could raise our DHT to a level where it would affect hairloss to that extent. I mean, if you hadn't taken accutane and your DHT levels had remained normal then you could have lost your hair anyways. Maybe accutane actually slowed that down. 

Mines starting to go anyways so creatine won't make a difference

Think we have to hold out for a few year until that anti-aging pill is available to buy !  

I've been on Androgel for a bit over two months now. Here are the hormone results from March 23rd.

Testosterone is up slightly to 549 (19).
SHBG is down to 40.
Estradiol is down to 73.

I'll suppose that my E is down due to taking 500mg Calcium D-Glucarate every evening. It is a slight improvement, but overall it IS an improvement. My shape has improved a little bit. I'm a bit more awake, certainly more aggressive and able to do things. It is just not what I was looking for though. At 25, keeping myself healthy, supplementing Testosterone... 549 T is a joke. Most importantly, I don't feel right.

I've read The Definitive Testosterone Replacement Therapy, and will be following its guidelines and switch to injections asap. I want to start with Undecanoate and eventually take Propionate once I'm used to injections.

-

@tanedoutI'm not up to date on methylation pathways and stuff. I haven't knowingly taken any supplement that I believe would help with this. I don't know about methylfolate. I still take 60mg+ Iodine everyday with its cofactors magnesium, vit c, vit k2. I tried zinc. The first time I felt like absolutely crap, the other times I don't feel it did anything. I don't feel like Creatine ever really did much for me except make me piss a lot.

My CYP2D6 is my only -/- detox pathway. Am I right to believe it might not have been like this before Accutane? Or is specifically the fact that it was already -/-, which prevent Accutane from being eliminated/flushed, therefore causing toxicity in excess?

Man, my head is spinning.

1 hour ago, Kynarr said:

I've been on Androgel for a bit over two months now. Here are the hormone results from March 23rd.

Testosterone is up slightly to 549 (19).
SHBG is down to 40.
Estradiol is down to 73.

I'll suppose that my E is down due to taking 500mg Calcium D-Glucarate every evening. It is a slight improvement, but overall it IS an improvement. My shape has improved a little bit. I'm a bit more awake, certainly more aggressive and able to do things. It is just not what I was looking for though. At 25, keeping myself healthy, supplementing Testosterone... 549 T is a joke. Most importantly, I don't feel right.

I've read The Definitive Testosterone Replacement Therapy, and will be following its guidelines and switch to injections asap. I want to start with Undecanoate and eventually take Propionate once I'm used to injections.

-

@tanedout I'm not up to date on methylation pathways and stuff. I haven't knowingly taken any supplement that I believe would help with this. I don't know about methylfolate. I still take 60mg+ Iodine everyday with its cofactors magnesium, vit c, vit k2. I tried zinc. The first time I felt like absolutely crap, the other times I don't feel it did anything. I don't feel like Creatine ever really did much for me except make me piss a lot.

My CYP2D6 is my only -/- detox pathway. Am I right to believe it might not have been like this before Accutane? Or is specifically the fact that it was already -/-, which prevent Accutane from being eliminated/flushed, therefore causing toxicity in excess?

Man, my head is spinning.

Injections are a breeze. PIP for only like the first 2-3 injections. My test is just about starting to kick in now, I did front load so I'm currently trying to get my E2 dialed in. My only major complaint right now is the acne hit hard within the last few days.

5 hours ago, Kynarr said:

@tanedoutI'm not up to date on methylation pathways and stuff. I haven't knowingly taken any supplement that I believe would help with this. I don't know about methylfolate. I still take 60mg+ Iodine everyday with its cofactors magnesium, vit c, vit k2. I tried zinc. The first time I felt like absolutely crap, the other times I don't feel it did anything. I don't feel like Creatine ever really did much for me except make me piss a lot.

My CYP2D6 is my only -/- detox pathway. Am I right to believe it might not have been like this before Accutane? Or is specifically the fact that it was already -/-, which prevent Accutane from being eliminated/flushed, therefore causing toxicity in excess?

Man, my head is spinning.

This is probably the best info I've seen on methylation protocols, it's a long doc but its worth a few reads to get your head around it.

http://howirecovered.com/active-b12-therapy-faq/

See what Mario comes back with - I'm not sure of all the defective genes that seem to be in the trend for sufferers, but it'll be interesting to know if you also 'fit the profile', so let us know!

7 minutes ago, tanedout said:

This is probably the best info I've seen on methylation protocols, it's a long doc but its worth a few reads to get your head around it.

http://howirecovered.com/active-b12-therapy-faq/

See what Mario comes back with - I'm not sure of all the defective genes that seem to be in the trend for sufferers, but it'll be interesting to know if you also 'fit the profile', so let us know!

Does this mean that zinc could possibly help

5 hours ago, Kynarr said:

I've been on Androgel for a bit over two months now. Here are the hormone results from March 23rd.

Testosterone is up slightly to 549 (19).
SHBG is down to 40.
Estradiol is down to 73.

I'll suppose that my E is down due to taking 500mg Calcium D-Glucarate every evening. It is a slight improvement, but overall it IS an improvement. My shape has improved a little bit. I'm a bit more awake, certainly more aggressive and able to do things. It is just not what I was looking for though. At 25, keeping myself healthy, supplementing Testosterone... 549 T is a joke. Most importantly, I don't feel right.

I've read The Definitive Testosterone Replacement Therapy, and will be following its guidelines and switch to injections asap. I want to start with Undecanoate and eventually take Propionate once I'm used to injections.

-

@tanedoutI'm not up to date on methylation pathways and stuff. I haven't knowingly taken any supplement that I believe would help with this. I don't know about methylfolate. I still take 60mg+ Iodine everyday with its cofactors magnesium, vit c, vit k2. I tried zinc. The first time I felt like absolutely crap, the other times I don't feel it did anything. I don't feel like Creatine ever really did much for me except make me piss a lot.

My CYP2D6 is my only -/- detox pathway. Am I right to believe it might not have been like this before Accutane? Or is specifically the fact that it was already -/-, which prevent Accutane from being eliminated/flushed, therefore causing toxicity in excess?

Man, my head is spinning.

You should try out Boron since you're taking Iodine. I've had really good success with it in terms of helping my energy levels, mood and libido. Remember that B2, B3, Selenium and Celtic/pink sea salt also are cofactors when supplementing with Iodine. In my opinion Boron is very needed when taking Iodine. Aids your body so much. Underrated supplement.

Start out with 6mg Boron (I recommend the Natures Way brand) and see how you feel. It's not a miracle worker by any means, but I think it'll help you a bit.

And for the Zinc debate - it never helped me in terms of anything.

All more crap, none of these supplements have or ever will fix retinoic acid damage. Accutane Is a different drug screws with everything all over our body whatever it does it sure doesnt grow healthy glands .it kills them. our adrenaline and other hormone producing gland systems ya ya ya are also turned off from accutanes acidic damage. all we know. get on TRT, eat perfect, live.... just trying to help.Ive been on trt for quite sometime and just to be honest with you guys (gals, you look nice today) its helped a ton. Course my T is up over 1500. But I like it that way, what else am I going to be weak tired with muscle loss low ED, and depression? Screw all that get the t up.. trust me I hate accutane it ruined my life but if they did this too us whos to say we follow any norms after they did something like that to us. Hope you all are doing financially okay and enjoying the day.