39 minutes ago, macleod said:

It's the hypothalamus. It's relation to the pituitary is what damages the hormone production. And it also explains the poor sleep.

I will post a few pages of a chapter I purchased online of a new medical textbook 'Iatrogenic Pathologies' Septtemer 2017. In it, the doctors state that Isotretinoin, a drug which has capacity of cellular apoptosis, damages the hypothalamus in animal models. It also goes on to explain other chemotherapy drugs and what is called Chronic adverse effects and in our case Chronic Delayed Adverse effects. They also mention the liver, surprisingly, and how it may have issues filtering detoxifying etc.

A bit satisfying to realize that we all were pretty much on the money with our theories. Then again it kinda sucks, because if doctors are just now writing about this, and we've known about this for years, then we are on our own.

So why hasn't anyone tried any type of TRT then? If it's the pituitary then replacing those missing hormones or rebalancing them should bring relief? Shouldn't it?

6 minutes ago, Colinboko said:

47 minutes ago, macleod said:

It's the hypothalamus. It's relation to the pituitary is what damages the hormone production. And it also explains the poor sleep.

I will post a few pages of a chapter I purchased online of a new medical textbook 'Iatrogenic Pathologies' Septtemer 2017. In it, the doctors state that Isotretinoin, a drug which has capacity of cellular apoptosis, damages the hypothalamus in animal models. It also goes on to explain other chemotherapy drugs and what is called Chronic adverse effects and in our case Chronic Delayed Adverse effects. They also mention the liver, surprisingly, and how it may have issues filtering detoxifying etc.

A bit satisfying to realize that we all were pretty much on the money with our theories. Then again it kinda sucks, because if doctors are just now writing about this, and we've known about this for years, then we are on our own.

So why hasn't anyone tried any type of TRT then? If it's the pituitary then replacing those missing hormones or rebalancing them should bring relief? Shouldn't it?

You would think but if the source of what sends the hormones is broken we need to fix it before we can expect any change, how you do that is anyones guess?

Bit like trying understand why you cant send email when your computer is busted - how can it when main source is screwed, thats how Im seeing it.

I mean its all well and good to try and balance the hormones but more than anything you need the hardware working too, in our case that would be the Hypothalamus.

2 minutes ago, TrueJustice said:

You would think but if the source of what sends the hormones is broken we need to fix it before we can expect any change, how you do that is anyones guess?

Bit like trying understand why you cant send email when your computer is busted - how can it when main source is screwed, thats how Im seeing it.

I mean its all well and good to try and balance the hormones but more than anything you need the hardware working too, in our case that would be the Hypothalamus.

Well and I guess that all just goes back to wanting a permanent fix or wanting something to take now that can help one feel better...

at this point id take the latter. Feel like absolute crap

Unable to highlight the important parts so you'll have to read it all. Page 3 mainly. Also note the references #2,3,4,6,10,11,14, Get those books to learn more. 
 

I know this has probably been discussed on here before and I'm sorry for derailing the current conversation. However, do you guys think its possible for us to be deficient in Vitamin A? Basically all of my symptoms match vitamin A deficiency (all my symptoms are skin related). Dry skin, bumps on the back of my arms, dry hair, i'm unsure about my night vision - i think it's okay and dry lips. My face also no longer sweats which I read can be sign of vitamin A deficiency.

I don't have any of the other sides like ED and depression, brain fog etc... so i'm going to give cod liver oil a shot - i've been taking Fish oil just to avoid the vitamin A but i've avoided vitamin A for 5 or 6 years now. Just seems a lot could be explained by us all avoiding vitamin A. Might be why people who start eating green leafy diets start to feel better, rather than it being a gut thing.

So, what I gather is that this stuff is common knowledge and doctors are trained to report and mitigate symptoms by referring us to psychiatrists to be put on anti-depressants. It's debatable whether those pills repopulate cells in the brain or they just cover up symptoms and don't really address the problem. So, you'll have to go the extra mile to seek specialists or alternative medicine to attempt to "fix" or Undo what has been done.

If you or a loved one has depression or has committed suicide, there is clear evidence linking the drug to depression now. There is definitely a case for a lawsuit. The only card Roche has in court is the warning they put on the box. But that can be fought taking age into account, naivety, trusting your doctor who verbally never mentioned such side effects, and the fact that irreversible damage has been done regardless of a signature. Why should you have to pay for sleep medication, for antidepressants? Why is your career choices in life now limited to stocking shelves at night or working part time or at home around your side effects? Just to pay all what you earn towards your poor health. Take them to court.

Yes, I have been on TRT since August and it helps energy, muscular system, and libido for me. However it is not a permanent solution, and it minimally addressed my mood, brain fog, anhedonia. The hypothalamus has many roles, such as sleep, hunger, thirst, body temperate, hormones, nervous system,affection for loved ones, oxytocin production etc.

JustDry, Vitamin a receptor deficiency is still relevant. I and a few others notice benefits supplementing with Vitamin a. Some see worsening symptoms. It's a coin flip. I have mentioned in the past in a science journal i read about an Indian boy who lost his night vision on accutane, was taken off immediately, and doctors supplemented with vitamin A to regain his vision. 200,000 iu for a month. He recovered his vision.

Needless to say its complicated.unless you find a scientist that will help, we will have a hard time making the progress we want.

On 11/20/2017 at 11:50 AM, TrueJustice said:

You would think but if the source of what sends the hormones is broken we need to fix it before we can expect any change, how you do that is anyone™s guess?

Bit like trying understand why you can™t send email when your computer is busted - how can it when main source is screwed, that™s how I™m seeing it.

I mean it™s all well and good to try and balance the hormones but more than anything you need the hardware working too, in our case that would be the Hypothalamus.

Anybody used Cerebrolysin??

Neurogenesis in the hypothalamus is activated by CNTF.
Cerebrolysin activates it, but you have to inject it in your butt
Read a testimony here.
[removed]

9 hours ago, macleod said:

So, what I gather is that this stuff is common knowledge and doctors are trained to report and mitigate symptoms by referring us to psychiatrists to be put on anti-depressants. It's debatable whether those pills repopulate cells in the brain or they just cover up symptoms and don't really address the problem. So, you'll have to go the extra mile to seek specialists or alternative medicine to attempt to "fix" or Undo what has been done.

If you or a loved one has depression or has committed suicide, there is clear evidence linking the drug to depression now. There is definitely a case for a lawsuit. The only card Roche has in court is the warning they put on the box. But that can be fought taking age into account, naivety, trusting your doctor who verbally never mentioned such side effects, and the fact that irreversible damage has been done regardless of a signature. Why should you have to pay for sleep medication, for antidepressants? Why is your career choices in life now limited to stocking shelves at night or working part time or at home around your side effects? Just to pay all what you earn towards your poor health. Take them to court.

Yes, I have been on TRT since August and it helps energy, muscular system, and libido for me. However it is not a permanent solution, and it minimally addressed my mood, brain fog, anhedonia. The hypothalamus has many roles, such as sleep, hunger, thirst, body temperate, hormones, nervous system,affection for loved ones, oxytocin production etc.

JustDry, Vitamin a receptor deficiency is still relevant. I and a few others notice benefits supplementing with Vitamin a. Some see worsening symptoms. It's a coin flip. I have mentioned in the past in a science journal i read about an Indian boy who lost his night vision on accutane, was taken off immediately, and doctors supplemented with vitamin A to regain his vision. 200,000 iu for a month. He recovered his vision.

Needless to say its complicated.unless you find a scientist that will help, we will have a hard time making the progress we want.

Thats a great point about where we are potentially left after tane, careers on hold, relationships on hold, life on hold. All the while with any money you do earn having to be spent trying to get out of this mess!!

Fucking brilliant isnt it, and the best part is theres no recognition or better yet compensation from anyone.....

Hi, things like this can take many years. Be careful of the supplements you're combining. I'd see a very good naturopath who is also trained as GP. Someone who specialises in hormones and immune/endocrine areas.

On 11/21/2017 at 2:52 AM, Walden Rev said:

Anybody used Cerebrolysin ??

Neurogenesis in the hypothalamus is activated by CNTF.
Cerebrolysin activates it, but you have to inject it in your butt
Read a testimony here.

[removed]

 

Thanks for this, I was already in the process of ordering some Semax and I just added Cerebrolysin to the cart. Going to try it out over the winter as well as hyperbaric o2 therapy. Let's hope for big results 2018.

1 hour ago, macleod said:

Thanks for this, I was already in the process of ordering some Semax and I just added Cerebrolysin to the cart. Going to try it out over the winter as well as hyperbaric o2 therapy. Let's hope for big results 2018.

Man, dont you worry about overloading the system??

Arent you also on the cannabis oil too? And getting good results?

What isnt the oil doing that you feel the need to buy more stuff? Just curious as Id like to perhaps look at oil in new year...

I've think ive made a breakthru!

I've solved my intrahepatic cholestasis problem.
20+ years of jaundice solved almost overnight with combination of two supplements. My eyes are white, and continue to remain for a few weeks now.

give me some time to write it up.

MARIO....

NADPH, ATP, ESTROGEN INDUCED CHOLESTASIS CLEARANCE.

3 hours ago, TrueJustice said:

Man, dont you worry about overloading the system??

Arent you also on the cannabis oil too? And getting good results?

What isnt the oil doing that you feel the need to buy more stuff? Just curious as Id like to perhaps look at oil in new year...

Nah i'm not worried, I'm as conservative as they come. I don't combine or "stack" things. I trial and error for a couple weeks and stick with what works. I don't take too many synthetic things on a regular basis. Hardly ever.

Tried Tianeptine for a month, some mental energy, anti anxiety properties. Nothing major and doesn't last. Discontinued.
Tried Noopept, Oxiracetam, Piracetam, Aniracetam, all the old school nootropics. Some mental energy, kinda speeds you out, doesn't last. Discontinued.

Here's what I do daily without question: I apply my TRT gel in the morning (naturally occurring hormone). As far as supplements I've tried them all (all are natural). Here's what works: Vitamin C. Vitamin D. Silymarin (natural liver detoxify). Glutathione (naturally occurring liver detox). Digestive Enzymes (natural vegan). And that's about it. Sometimes, I'll do Vitamin A one day, or lutein, hoping my vision will improve. That's about it. I've just got vitamin K in the mail and will try that this week. I eat healthy and I drink tea or coffee. I'll add Reishi mushroom or Tumeric to soups. Chinese style health. Look forward to trying Lions Mane next week for my brain. All Natural.

Yes, I've started CBD oil and it is great. It's the best anti inflammation and anti anxiety i've tried. It literally takes so much weight off your shoulders. And I get boosts of pleasure. The stuff that I buy is the real deal potent black oil from a family farm, so I can only do a little bit. It's great. It might be doing good for the long term, but who knows, too early to tell.

When I do get Semax and the Cerebrolysin in. I will try them on their own for a week and write down notes. Just experimentation. Need to make progress.

https://www.gov.uk/drug-safety-update/isotretinoin-roaccutane-rare-reports-of-erectile-dysfunction-and-decreased-libido#further-information

If everyone had been reporting their side effects the leaflet would have been up-dated years ago.
If everyone reported their side effects - numbers would have increased the chances of winning a legal case.

If you don't report your side effects you are as bad as roche.
Today accutane syndrome is not recognise because hardly anyone reports their side effects and for that reason roche are allowed to destroy lives
and cause many to commit suicide.

Because no one reports their side effects, accutane syndrome is not recognised - no research is being undertaken to find a cure.

roche we believe know exactly how damaging accutane is but you guys know better than anyone because you have experienced it.
Let's not forget the many wonderful kids (including James Sillcock, a former member of this forum) who no longer have a voice.

Ask yourselves how long you have been suffering - then ask yourselves how many kids have followed in your footsteps?

Easy to blame roche - what about taking some of the blame yourselves!

To all Veterans I give up. If you haven't reported already you never will.

To all newbies - I implore you to report your sides immediately. If you don't know how, PM me and I will get the relevant information for you.

http://www.dailymail.co.uk/news/article-2367075/Healthy-footballer-James-Sillcock-26-taking-acne-drug-RoAccutane-killed-mental-health-problems.html

On 11/20/2017 at 9:21 PM, TrueJustice said:

Thats a great point about where we are potentially left after tane, careers on hold, relationships on hold, life on hold. All the while with any money you do earn having to be spent trying to get out of this mess!!

Fucking brilliant isnt it, and the best part is theres no recognition or better yet compensation from anyone.....

I believe I am right in thinking that you, for all your 20+ years suffering, have never reported your side effetcs.
Why would you get recognition or compensation when no one even knows about you?

Just saying!

Just bought some modafinil.
its an quick fix i know but i just started a new job and need some energy. Anyone tried it before?

6 hours ago, hatetane said:

I believe I am right in thinking that you, for all your 20+ years suffering, have never reported your side effetcs.

I reported my side effects to my dermatologist, he said its not the accutane. I reported my side effects to a neurologist, he said its not the accutane.
I reported my side effects to a gastroenterologist, a cardiologist, multiple primary doctors, ent, rheumatologist, none seemed that concerned because whats happened or happening isnt showing up on their standard run tests or some things might, but they are not willing to make the connection or take things any further. Ive also reported to the regulators and independents.

Anyone still going to doctors, any time you come across a story like @Toggs, print it out. Store them in a folder. So if a doctor (most specifically your prescribing dermatologist) tells you its not the accutane, you can show them and say "read this, read that one, read this other one, I got 50 more of these, now tell me its not the accutane." The side effect profile is way too similar in all of these cases to be denied. Maybe do the same with significant studies to encourage testing you might be getting denied.

That being said, all it takes is one blood test to come back abnormal that we might all have in common. Maybe that test isnt out there yet.
Theres a few tests im still curious about, maybe i'll just put them in my signature so people know. These might be insignificant as an individual, but could be very significant if we found we had these in common.

This first test might be the easiest to get ordered. This could be related to vitamin K processes as it's involved in coagulation and anticoagulation.

"Warfarin use(a vitamin k antagonist) often causes false-positive results in the dilute Russell viper venom time test (DRVVT)".
Retinoids have been reported to be antagonistic to vitamin K.

I tested positive for Dilute Russell's Viper Venom Time.

Lupus Anticoagulant Evaluation with Reflex

http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=7079

4 hours ago, hatetane said:

https://www.gov.uk/drug-safety-update/isotretinoin-roaccutane-rare-reports-of-erectile-dysfunction-and-decreased-libido#further-information

If everyone had been reporting their side effects the leaflet would have been up-dated years ago.
If everyone reported their side effects - numbers would have increased the chances of winning a legal case.

If you don't report your side effects you are as bad as roche.
Today accutane syndrome is not recognise because hardly anyone reports their side effects and for that reason roche are allowed to destroy lives
and cause many to commit suicide.

Because no one reports their side effects, accutane syndrome is not recognised - no research is being undertaken to find a cure.

roche we believe know exactly how damaging accutane is but you guys know better than anyone because you have experienced it.
Let's not forget the many wonderful kids (including James Sillcock, a former member of this forum) who no longer have a voice.

Ask yourselves how long you have been suffering - then ask yourselves how many kids have followed in your footsteps?

Easy to blame roche - what about taking some of the blame yourselves!

To all Veterans I give up. If you haven't reported already you never will.

To all newbies - I implore you to report your sides immediately. If you don't know how, PM me and I will get the relevant information for you.

http://www.dailymail.co.uk/news/article-2367075/Healthy-footballer-James-Sillcock-26-taking-acne-drug-RoAccutane-killed-mental-health-problems.html I believe I am right in thinking that you, for all your 20+ years suffering, have never reported your side effetcs.
Why would you get recognition or compensation when no one even knows about you?

Just saying!

Ok, a few things here,

I absolutely knew this was coming from you, not in a bad way, I just know youre the champion in all things reporting!!

Ive reported my side effects/issues to so many doctors specialists etc Ive lost count, its actually now at the detriment of future employment- its on all my medical reports etc.

Secondly its too late to report to an FDA body for example side effects that started 20 years ago - thats coming from my GP!!!

8 hours ago, guitarman01 said:

I reported my side effects to my dermatologist, he said its not the accutane. I reported my side effects to a neurologist, he said its not the accutane.
I reported my side effects to a gastroenterologist, a cardiologist, multiple primary doctors, ent, rheumatologist, none seemed that concerned because whats happened or happening isnt showing up on their standard run tests or some things might, but they are not willing to make the connection or take things any further. Ive also reported to the regulators and independents.

Anyone still going to doctors, any time you come across a story like @Toggs, print it out. Store them in a folder. So if a doctor (most specifically your prescribing dermatologist) tells you its not the accutane, you can show them and say "read this, read that one, read this other one, I got 50 more of these, now tell me its not the accutane." The side effect profile is way too similar in all of these cases to be denied. Maybe do the same with significant studies to encourage testing you might be getting denied.

That being said, all it takes is one blood test to come back abnormal that we might all have in common. Maybe that test isnt out there yet.
Theres a few tests im still curious about, maybe i'll just put them in my signature so people know. These might be insignificant as an individual, but could be very significant if we found we had these in common.

This first test might be the easiest to get ordered. This could be related to vitamin K processes as it's involved in coagulation and anticoagulation.

"Warfarin use(a vitamin k antagonist) often causes false-positive results in the dilute Russell viper venom time test (DRVVT)".
Retinoids have been reported to be antagonistic to vitamin K.

I tested positive for Dilute Russell's Viper Venom Time.

Lupus Anticoagulant Evaluation with Reflex

http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=7079

Thanks Guitarman . Obviously I know many of you have reported. I also know how hard it is and it would seem that no one cares but surly we can all agree that everyone needs to report theirs sides - simple!

I had exactly the same experience, Doctor wouldn't listen so I went to the practice manager she wouldn't listen or raise a red flag.
Went to a new doctor - same process same response.
Basically reported at every level including EMA (PRAC), World Health and MP's.
I've been getting nowhere but I won't give up.
At least now sexual side are getting some recognition and I know it's not enough but it is a start.
At least a doctor will not be able to sit there and tell you it's all in your head..
Roche destroyed your lives - you can't change that.
All you can do is stop them doing it to others.

@Truejustice - all I know is that your refused to email PRAC members.

Thank-you to everyone that did because at least we have moved them on a little bit.

Totally with you on the reporting, if youre newly fucked up by tane - report, report, report!!!

I will say for older members who missed their window, there is power in telling doctors and specialists what you think fucked you up, Ive told everyone from varicose vein surgeons to endocrinologist to gastroenterologist to psychiatrist.....the list goes on. Thank god for the power in some of the tests that people post here which you can print off and show doctors,esp the recent $100K one, why would there be a need to offer someone money like this if its all in our heads??
thats the sort of ammunition thats irrefutable in my opinion, when your dr says its rare to get these side effects, break that little document out and say cop this!!!!

Ps the part about jeopardising future employment isnt directly due to going on tane, its more on the amount of tests and procedures Ive been through post tane in searching for answers that impact on my medical records, one potential employer was intrigued by how much medical procedures Id done, prob thinking is this guy fit to even work, whats wrong with him.....just be careful if you can with that sort of stuff, best if you can avoid it going on your records, thats easier said than done though after 20 years of tests!!

2 minutes ago, TrueJustice said:

Totally with you on the reporting, if youre newly fucked up by tane - report, report, report!!!

I will say for older members who missed their window, there is power in telling doctors and specialists what you think fucked you up, Ive told everyone from varicose vein surgeons to endocrinologist to gastroenterologist to psychiatrist.....the list goes on. Thank god for the power in some of the tests that people post here which you can print off and show doctors,esp the recent $100K one, why would there be a need to offer someone money like this if its all in our heads??
thats the sort of ammunition thats irrefutable in my opinion, when your dr says its rare to get these side effects, break that little document out and say cop this!!!!

Ps the part about jeopardising future employment isnt directly due to going on tane, its more on the amount of tests and procedures Ive been through post tane in searching for answers that impact on my medical records, one potential employer was intrigued by how much medical procedures Id done, prob thinking is this guy fit to evenwork...just be careful if you can with that sort of stuff, best if you can avoid it going on your records, thats easier said than done though after 20 years of tests!!

I wasnt aware in Australia we even needed to provide medical records??

Im going to continue to look at this while there's still a trail. There is alot of possible evidence for this.

Vitamin K₂Biosynthetic Enzyme, UBIAD1 Is Essential for Embryonic Development of Mice

• Published: August 15, 2014

http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0104078

7 hours ago, hatetane said:

Thanks Guitarman . Obviously I know many of you have reported. I also know how hard it is and it would seem that no one cares but surly we can all agree that everyone needs to report theirs sides - simple!

I had exactly the same experience, Doctor wouldn't listen so I went to the practice manager she wouldn't listen or raise a red flag.
Went to a new doctor - same process same response.
Basically reported at every level including EMA (PRAC), World Health and MP's.
I've been getting nowhere but I won't give up.
At least now sexual side are getting some recognition and I know it's not enough but it is a start.
At least a doctor will not be able to sit there and tell you it's all in your head..
Roche destroyed your lives - you can't change that.
All you can do is stop them doing it to others.

@Truejustice - all I know is that your refused to email PRAC members.

Thank-you to everyone that did because at least we have moved them on a little bit.

"Roche destroyed your lives - you can't change that. All you can do is stop them doing it to others"

Now you're REALLY starting to piss me off. You have no idea what we're capable of discovering about this drug. What you said right there is a huge slap to guitarman and all his hard work. I'm not letting this drug destroy my life and I will help fight to find a way out of this. We have every right to be selfish and worry about ourselves right now. And by that I mean FOCUS ON WHAT IS IMPORTANT

Reporting sides doesn't do anything because no one listens!

9 hours ago, Iamme. said:

I wasnt aware in Australia we even needed to provide medical records??

Depends what job, if youre going for stacking shelves at supermarket youll be fine which Ive done when in between jobs, other jobs require a more comprehensive medical which is where you need to be careful.

2 hours ago, Colinboko said:

"Roche destroyed your lives - you can't change that. All you can do is stop them doing it to others"

Now you're REALLY starting to piss me off. You have no idea what we're capable of discovering about this drug. What you said right there is a huge slap to guitarman and all his hard work. I'm not letting this drug destroy my life and I will help fight to find a way out of this. We have every right to be selfish and worry about ourselves right now. And by that I mean FOCUS ON WHAT IS IMPORTANT

Reporting sides doesn't do anything because no one listens!

I wasnt really that offended or angry. I know her intentions are good. I thought it provoked a good talking point. It would be nice to find a real connection in all of us (besides having taken accutane), because even something as real as erectile dysfunction could be spun and chalked up to as a psychological problem by the drug manufacturer. To be clear I am all in support of reporting your sides. The sooner the better as well if you just came off the drug. A example of something real is I took accutane, now I have low testosterone. The problem is we just dont know what was going on before accutane because we were all relatively young. We know it obviously had a long standing negative impact. How do we go about proving this or showing it?

Im going to repost this because I wanted to show something else. We all know Accutane is guaranteed to cause birth defects in pregnant women.

Vitamin K₂Biosynthetic Enzyme, UBIAD1 Is Essential for Embryonic Development of Mice

• Published: August 15, 2014

http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0104078

Ubiad1-deficient mice are embryonic lethal

The study also goes on to mention vascular degeneration.
Lack of blood flow,lack of oxygen=death in mice.
Possibly birth defects in humans.

Let me transpose this to make this really clear. I could go on about this in great detail, but im trying to keep things real short and to the point.

Vitamin K₂Is Essential for Development

Vitamin k2deficient mice are embryonic lethal