70 replies to this topic

[abcabc]

Antisexaccutane,

I could write a novel on my past 10 years experience involving Accutane, but I'll try to keep it as short as possible. I started feeling my side effects about a year after taking Accutane. My side effects got increasingly worse up to years 3-5 post Accutane. At this point I had a list of side effects I had never experienced before in my life. Sexually, I could barely keep an erection even during masturbation. Getting hard ons from just looking or thinking about girls was a thing of the past. My orgasms became increasingly less satisfying. My ejaculate went from being strong, thick, and creamy to basically a water like substance. My urination problems were also during this time. I never had any pain or urinary tract infections, but my urine stream was about 20% of what it used to be. Also, when I was done urinating I would have to stand at the toilet for a couple of minutes to let the final drops of pee drip from my penis. In addition to this I also had insomnia. I swear there were weeks when I could only sleep about 20 hours despite being incredibly tired. My hair was falling out at a rapid rate. I had many nosebleeds. I became sensitive to the sun. Every time I went out into the sun a rash appeared on the inside of my elbow. Maybe the worst of my problems were joint, muscle, and back pain. I could probably think of other problems I had, but these were the worst. All of this led to depression to the point where I didn't care if I lived or not.

During years 3-5 post Accutane I tried a couple things to heal myself. I went to my doctor and told him about my struggles. He put me on an anti depressant (Lexapro) which made things even worse. I then went to a naturopathic doctor. She put me on many supplements and remedies. This was very expensive because insurance doesn't cover naturopaths, and the healing I received from this was definite but minimal. Then, about 5 years post Accutane I discovered fasting.

I tried a 35 day all water fast. I felt significantly better after this. I was not cured, but my side effects had improved a lot. I have done a total of 3 of these fasts in years 5-10 post Accutane. Every time my side effects got better. This is where I got my 75-80% health back. Fasting is not an instant cure, but it speeds up your body's recovery. It is difficult to do, but not as impossible as it sounds. The hardest part for me is finding the time to do it. If you even consider doing this I'm sure you will have many questions. I will try to answer questions you have, but there is an ABUNDANT amount of information on this subject on the Internet. As far as the sexual aspect, I have seen improvements there. My ejaculate is now thicker, and I can get better erections now than previously. My pee stream is a lot better than it used to be. Overall, I am about 75% fully recovered. I'm not back to the way I used to be, but I feel like I am on the way. I hope this helped.

[Welt]

Thank you for your input and support abcabc, oligirl, antisexaccutane, showbarka and Babis.

I recently finished my 6 month course (no real problems except for dryness) of isotretinoin (Claravis) on March 03. After finishing, my semi-brain fog wore off and my emotions and hormones were on steroids.

Then approximately 1 month after I completely crashed. It felt like part of my brain had shut down. My dick and brain were completely disconnected and I could no longer experience strong emotions. My dick felt numb, detached from my body, my libido went from off the roof to zero, orgasmic sensation dramatically decreased, erectile dysfunction, no more nocturnal erections, no more morning wood and no more spontaneous erections (This all happened basically overnight).

I am young and in my early 20s, I practically thought I was invincible before taking accutane. I talked to my Dr. about my concerns before starting the drug, about the studies that show decreased neurogenesis in the hippocampus, hypothalamus and inflammatory bowel disease. He just brushed them off as hearsay and claims he has treated hundreds of patients with no problems (this is probably because the most severe side effects don't appear until after treatment). Of course, I was stupid and listened to him.

Some of my emotions have come back, however the sexual side effects have persisted for 5 months after my crash. There is a direct study linking how isotretinoin (accutane) is linked with erectile dysfunction, but it doesn't receive much credit because it was done in Mexico.

CODE

http://www.ncbi.nlm....pubmed/16447596

Sorry, BB Code isn't working for me so this is the only way it would let me post my links!

It is also noted in Wikipedia that erectile dysfunction and decreased libido are not rare, but infrequent side effects of isotretinoin therapy. It also notes that these side effects can persist long after treatment and can be permanent.

CODE

http://en.wikipedia....ki/Isotretinoin

It's good to hear that some of you have recovered some overtime. There are many other sufferers who experience very similar symptoms over at

CODE

www.propeciahelp.com

. It is believed that isotretinoin and propecia (finasteride) have near identical modes of action when it comes to the sexual and neurological side effects of the drugs. I plan to post more on this in the future. The mechanisms of action of isotretinoin are just beginning to be understood. A meta-analysis study has just been published on how isotretinoin works on an epigenetic level, potentially causing many side effects that persist long after its use.

CODE

https://www.landesbi...MelnikDE3-3.pdf

Edited by Welt, 17 September 2011 - 12:16 AM.

[Babis]

Guys, in order to help others, please consider reporting your side effects to the FDA MedWatch program:
http://www.fda.gov/S...t/ucm053074.htm

The online report system is obviously the easiest. Just submit a short and concise report, and keep your medication boxes because they need the LOT numbers. (You will also need the boxes in case you seek legal help in the future).

Remember: you do not have to prove that your side-effect was caused by Isotretinoin. That is the FDA's job. The FDA wants you to report any side effect you experience while taking a medication. They will then compare the side-effect incidence rate with baseline rates and decide whether the label must be revised. If your problem is persistent, then make sure you mention that. Serious side-effects must be mentioned on the label even if causation cannot be yet established. Permanent neuroendocrine dysfunction is certainly serious.

If no-one reports this side-effect, the label will never be updated.

Updating the label (as the folks at propeciahelp.com achieved for finasteride) will accomplish several things:
1) Future patients will be given informed consent, so they can decide whether it is worth the risk or not
2) Patients that develop listed symptoms will recognize them earlier and stop the medication earlier
3) If the side-effect is on the official label, patients with persistent problems will be taken more seriously by their doctors and will get more thorough testing. This is critical and noone I have spoken to seems to be getting sufficient labwork.
4) If one does go on accutane, he should check his hormones before, during, and after treatment. You only have one pituitary gland and one hypothalamus, and isotretinoin has been shown to damage them. The current practice of just checking the liver is not enough.

Edited by Babis, 05 October 2011 - 09:02 AM.

[Babis]

Despite seeing multiple specialists at Froedert hospital for over a year, my hormone deficiencies and dysautonomia kept worsening.
Yet, in each visit, the doctors would only listen to 10% of my symptoms before stopping me. From that they could only explain 2%.
Ancient philosopher Plato used to say "I know one thing, that I know nothing". But not Fraudert doctors. They know nothing, not even that they know nothing. Despite my worsening symptoms, they confidently told me that (a) my problem is a very mild dysautonomia, (b) it is not autoimmune, (c ) I am exaggerating my symptoms (d) my symptoms were mostly psychological.

WTF?

Not only were they confident, they also yelled at me for reading literature (as if it is their exclusive privilege, never mind that they do not bother reading it) and for going to a another doctor to get the antibody testing and the PET scan that they had refused. When the results came back abnormal, they got even more mad. The told me I was going on a wild goose chase. Well, I obviously want to find out what is causing my problems and treat the cause, so I chose the wild goose chase. The antibody test was positive. My PET scan was done at Fraudert hospital and was interpreted by Froedert radiologists as normal. Since I had no faith left in them, I asked the doctor at Mayo clinic to have my PET scan re-interpreted. The interpretation just came back and it is completely different. The Mayo radiologists used special software (called neuroQ) and here is the result.

Glucose metabolism compared to the mean:
Right associative visual cortex: -5.2 standard deviations below the mean
Right primary visual cortex: -2.9 standard deviations below the mean
Left associative visual cortex: -5.0 standard deviations below the mean
Left primary visual cortex: -2.2 standard deviations below the mean
Right superior lateral temporal cortex: -2.9 standard deviations below the mean
Cerebellar vermis: -2.4 standard deviations below the mean
Left cerebellum: -2.1 standard deviations below the mean
The pattern of abnormalities does not fit any classic neurodegenerative disorders.
The possiblity of a subacute neuroinflammatory or encephalitic process cannot be excluded.

These abnormalities correlate with my symptoms, but were completely missed at Fraudert hospital. I regret wasting a year of my life trying to get help from them. Never mind that Fraudert doctors misdiagnosed me, ignored me and insulted me. Most importantly, they failed to realize the urgency of the situation:

First, autoimmune dysautonomia is associated with a 30% cancer rate: some people have cancer and their body makes antibodies to fight it. Sometimes, even with the cancer gone, these antibodies hang around with nothing else to do but attack the nervous system.

Second, in the remaining cases, the antibodies were created as a mistaken response to a viral infection or vaccination. (Drugs like accutane increase the likelihood of autoimmunity, which is why you should not get vaccinations when taking it. Conversely, you should not take accutane if you have had a vaccine in the previous year.) As mentioned here, many such cases respond well to early immunotherapy.

This video on autoimmune dementia by a Mayo Clinic neuroimmunologist illustrates the key points (cause and treatment are similar to autoimmune dysautonomia). The new specialty of immunotherapy-responsive nervous system disorders is likely to expand further as more antibody targets are discovered. Some groups are at the forefront of research, discovering antibodies, designing essays and algorithms to detect them and methods of treatment. But most doctors in your local hospital still have no clue how to diagnose, let alone treat, such disorders -- they live in medieval darkness.

Edited by Babis, 02 November 2011 - 07:00 AM.

[Dwest2345]

I took the world's worst legal TOXIN known as Accutane in 1997 when I was 16 and a virgin and have literally been in a living hell ever since. By far the worst mistake of my life!!!!!!! I thought the FDA made sure drugs were safe for public consumption?? Boy was I wrong...dead wrong possibly. I guess the FDA takes the wait n see approach? Can you imagine allowing a damn drug onto the market and you don't even know exactly how it works? The exact mechanism of Accutane is unknown? WTF? Prove how it works then approve it....right? Well that's what the FDA did and it ruined my life along with my brothers. In the FDA's defense nothing like Accutane was ever created so I think they were taken off guard. At least I never thought a drug could be so permanetly destuctive. Taking Accutane for me and my brother was worse than actually dying, even though I am because of my Kidney. Whoever or whomever passed Accutane has a lot, and I mean a lot of blood on their hands. Every fetus that came out deformed, every poor kid that killed themselves etc. I just hope GOD makes anyone who knowingly put profits ahead of lives pay and pay dearly for what they may have knowingly did. They actually gave an award to Dr. Gary Peck aka "SATAN" who invented/created this toxin which makes me cringe. I learned the hard way that if something is too good to be true it always is. The only reason I took Accutane/Toxin was because it worked for my mother. She would rave about it all the time when I was young. She literally said to me it's a "miracle drug" and I quote "Everybody should take it". After I heard her say that I was sold and was dead set on taking it at the first sign of acne, which I later did and regret every single day.I remember clear as day getting home and was surprised to see that Accutane came in a box, and the pills were in foil. It said pregnant women shouldn't handle or take it. Red flags went up and I was thinking this stuff is legal and easily obtained so it has to be safe right? WRONG, I underestimated greed and thought it went through a lot of testing on humans. Just thinking a company made tens of Billions off literally poisoning people makes me sick.


Now I'm 31 and I just found out that 100% it had to be Accutane that ruined me. It is the only medicine, and it should be called "The SEX KILLER DRUG" I've ever taken besides over the counter meds. After I believe a few weeks into my 6 month dosing schedule I began to not be able to maintain errections and lost almost all the feeling in the head of my penis along with a disconnected/numbness feeling, like my penis wasn't a part of me. If you've taken Accutane young and are male you might know what Im talking about. I literally went from being rock hard and horny all the time to a pathetic joke and still am at 31. I never had a girlfriend in my life because I couldn't/can't perform.....again sad but true. I tried over & over and it usually ended up with me losing my erection being embarassed and never wanting to see the girl again due to total and utter embarassment. I still remember the first sign of impotence in 1997. I was very confused and alarmed -sad but 100% true. Little did I know that's how I would stay the rest of my life. My libido has been almost zero ever since taking that horrible toxin.

My brother took Accutane in 1996 and was the major reason I took it. He had really bad acne and it cleared him up pretty well. So I didn't want to get bad acne so I went on Accutane/Toxin as a precaution, which makes my story all the more horrible. At the first sign of a few pimples I told my brothers dematologist I wanted to go on accutane because I heard it cleared acne up for life. The Dermatologist was a little reluctant but said ok. A year after my brother was on Accutane/Toxin he confided in me that he couldn't keep erections well and said he really had no feeling in the head of his penis. I was uterly shocked because I was going through the same issue. I thought it was genectic because I was so sold on Accutane being safe I never correlated the two. His friend also experienced the exact same side effects. Think about it? The only 3 males I have known to take Accutane ie.myself, my brother and his friend all started to become impotent weeks into their course and have been that way 15 years later. There is no way it could have come from anywhere else but Accutane that is why I'm so adament it was Accutane that destroyed out sex lives/lives permanetly. Ater reading postings on here I had my DHT level checked and it is a mere 14.

I didn't put the two together until just recently and to say Im mortified would be an understatement.The sad part is I didn't even have bad acne. My mother took Accutane in 1983 and told me it was a" Miracle Drug".That is why I asked the dermatologist for it, and he reluctently did. He gave me 40mg for 3 months then 40mg/80mg alternating days the following 3 months.I suffered horrible depression, suicidal idealation, really bad aggession and a lot other side effects as well. I have kidney disease now and I have no family history or diabetes and never have taken any other medications so it had to be Accutane that destroyed my kidney. I never abused any drugs or alcohol either. Accutane has literally made my life a "living hell" as it has done to many. Too bad Roche didn't listen to Dr. Pezzi in 1991 or I could've been saved along with my brother and friend who also suffer from sexual dysfunction and zero libido and loss of feeling as a result of Accutane .For those unfamiliar with Dr. Kevin Pezzi he is a dermatologist who himself became impotent and contacted Roche numerous times dating back to 1991 about this horrible side effect.

But why would Roche listen? It would've literally costed them tens of Billions. This problem has to be widespread but it's exteremly hard to talk about, especially to a doctor who would probably not believe you.anyway. Roche had to know about this and knew disclosing this info would scare a lot of people away and open themselves to lawsuits. How could they not know? I hate Hoffmann-La Roche with a passion so deep that words cannot describe.I was wondering if hormone therapy or any other method could reverse this. After doing a lot of research I doubt it besides taking Viagra. Should I try hormone therapy or is that a waste of time? I wouldn't give Accutane to my worst enemy! It's literally cruel and unusual punishment. It would have been better for Roche to kill me. I literally feel as though I lived 1,000 deaths and I'm not exaggerating. I hope GOD makes Roche pay, because they had to know.I was living the dream until I took Accutane then the wheels fell off.

Before Accutane I never had a single sucidal thought, or was aggessive or had any obsessive thoughts or anxiety whatsoever. I really mean that, I was happy, now it's the opposite. There are 50 known listed side effects for Accutane and I got about the worst 10. I guess my body chemistry was just right to be affected? All I know for sure is before Accutane I was the completly normal and as soon as I went on Accutane I became extremely depressed, very Irritable ie. snapping on people, aggressive ie. got into fights my senior year, kicked off the baseball team/ school. I had crazy sucicdal thoughts a lot. And just had no interest in girls anymore. Also, I suffered from severve dry eyes which really screwed me up playing baseball before I lost my temper and got kicked off the team. I never smile or laugh anymore either does my brother and we both used to smile and laugh all the time before Accutane, this still persists to this day. If I didn't live It I wouldn't think believe it but it's what happened to me. Accutane really ruined my mind, body and soul. I guess that will happen when your pumping 40/ 80mg a day of 13-cis-retinoic acid in your developing body.Think about how ignorant my dermatologist was. He was giving a 16 year old boy who had literally a few pimples 80 mg a day of a retinoid that was proven to harm developing minds/nervous systems. My body is all messed up now, I just got diagnosed with IBS, and Kidney disease, and Generalized anxiety disorder. I just can't believe I'm a victim of corporate greed. My monocytes are low and the only two ways those are low is from toxin damage or chemotherapy ie Accutane. Thanks Hoffman La Roche for ruing my life along with tens of thousands. I hope all you corporate wigs burn in hell for profiting off hurting people!!!!!!!!!!!!!!


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[CLE parent]

My son started taking Accutane 2 years ago at the age of 16. He took it for 5 months, stopping a month early as his skin had cleared and he didn't like the side effects. Over the next year and a half I noticed occasional episodes of mild depression and moodiness in him which seemed out of character for him. He is a well adjusted, star athlete at his school, has many friends, president of his class, etc. He told me something had been bothering him but he didn't want to talk about it. Finally, he confided in me and my husband that he had started having problems with erections for the last year and a half and that it was causing his mood changes. I am a Physician Assistant, and so began questioning him and going back through anything that could be at the root of his problem. I am convinced that it was the Accutane. His ED started 3 months into treatment. I have explored all of the possible causes, talked with several doctors and urologists, and sifted through countless hours of medical literature. I found a urologist at a large teaching and research hospital near us that at least is open to the idea that it could be related. He is a urologist that specializes in ED, and told me that he has had only 1 other patient come to him suggesting that their ED is somehow related to taking Accutane.

The problem is just surfacing. Victims are to embarrassed to report, especially young men under the age of 18. Most teenage boys don't want to talk to their parents about their sex life. Also many people just don't make the connection because no one told them it was a possible side effect. My guess is that in a couple of years it will be "breaking news" that ED is a potentially permanent side effect of Accutane. As for my son, the urologist did some bloodwork which was all normal,including hormone levels. He gave him some samples of Cealis and Viagra to try, and my son said that they did help. If the problem persists we will get an ultrasound to check for possible bloodflow issues.

And by the way, I know that it is not related to drugs or alcohol use. I have been spot checking my son's urine and blood since he was 15 and able to drive! He has never tested positive.

Hang in there and don't give up. If your doctor tells you it's psychological, see someone else. I would recommend finding a urologist with an erectile dysfunction specialty at a larger hospital that is a research and teaching institution.

[Babis]

After a visit to Mayo clinic, a few pituitary hormone tests, and pituitary stimulation tests, I finally confirmed the source of the problem.
It is hypopituitarism. My MRI showed a relatively small pituitary to begin with, but I never had problems because it was producing enough hormones.
However, when I took Accutane, it caused most pituitary hormones to drop to low or low-normal levels. After Accutane, I had low TSH, low FSH, and low IGF-1. I also had the testosterone of a 90 year old male, with inappropriately normal LH. If testosterone is low, LH should not be normal; the pituitary should elevate LH to signal the testis to produce more testosterone. If it doesn't, then the pituitary (or hypothalamus) is not working properly. This is called hypogonadotrophic hypogonadism.

The articles I have posted above confirm that Accutane lowers pituitary hormones. In addition, my hypogonadal symptoms occured acutely while on Accutane and partialy diminished once stopping, so there is little doubt left that accutane causes hypopituitarism to susceptible individuals. What is not mentioned in the literature is that the damage may be permanent or long-term. If it causes apoptosis in sebaceous and meibomian gland cells, what would stop it from causing apoptosis in other glands as well, such as the pituitary gland?

When Crisler said in an interview that US endocrinologists know zilch about hormones, I was skeptical but, sadly, I found out the hard way how right he was. Yes, on lab reports, most of my hormone levels looked "normal", i.e. within lab range, so most endocrinologists thought my hormones were fine. Some of them suggested viagra or a penile implant (!) although I am only 33 years old. 8 out of 10 endocrinologists are not open to the fact that "normal" levels should be age-adjusted. You cannot consider the testosterone level of a 90 year old male normal for a 30 year old male. They were also happy that my LH was normal, and unable to recognize that it was inappropriately normal. It was only Alan Jacobs (neuroendocrinologist in NY city) that recognized this as a sign of hypogonadotrophic hypogonadism. But the growth hormone deficiency (due to hypopituitarism) was missed for another year, until I asked my endo for an IGF-1 test and, once that was abnormally low, a GH stimulation test. The test showed a zero GH response of the pituitary to stimulation!

I had to read hundreds of medical journal articles and see >50 doctors of all specialties before ending up in the right experts, doing the right tests, and zero in on the right treatments.

Anyway, since I confirmed the source of the problem I focused on treating the underlying cause. One can replace the missing hormones, but it is much better to restore their natural production by the body. I read guidelines on testosterone replacement therapy (such as those of John Crisler) but had to tweak them to suit my needs. I am doing well on low dose HCG + low dose testosterone gel. The usides and downsides of this protocol are detailed in Crisler's articles and interviews. Exogenous testosterone supressed natural production of testosterone by the testis, and LH & FSH by the pituitary. The upside of HCG is that it stimulates the testis to procuce testosterone naturaly, preventing testicular atrophy. However, it is still supressive to the pituitary. For this reason, I only take low doses that allow me to feel well but do not supress my pituitary too much. Moreover, to wake up my pituitary from time to time, I take a very low dose Clomid regimen for a week of every month or so. This stimulates the pituitary to produce LH and FSH. I feel much better in this regime, testis size has been restored (it was decreased for 1.5 years post-accutane) and muscle size is also beginning to be restored. Most importantly, I do not feel weak and exhausted like I did, and my heart pumps much better. I also found that Citicoline (an acetylchonine precursor) increases all pituitary hormones, which is perfect for me, and seems to have helped restore psychogenic erections (which were also lost for 1.5 years post-accutane). It increased my IGF-1 from 120 to 160, and I hope to increase it further to age-appropriate levels.

As I mentioned in other posts, I also developed autoimmune autonomic ganglionopathy after accutane. This is a potentially life-threatening autoimmune neuropathy mediated by neuronal acetylcholine receptor autoantibodies. The decreased number of alpha-3 acetylcholine receptors on my autonomic ganglia may be an extra reason why Citicoline helps me.

Edited by Babis, 20 February 2012 - 04:06 AM.

[Dubya_B]

Hey Babis, long time no see Good to hear you are feeling better.
Can't remember whether you were the guy who mentioned having seizures along with all the hypogonadal/hypopituitary symptoms.
If you were, did you finally get that under control?

[Babis]

Hey Dubya,

The seizures were never confirmed on EEG, because I never had an episode when I was being monitored. But I do know that they stopped when I started a high dose antiepileptic drug (Oxcarbazepine).

The autoimmune dysautonomia and encephalitis have been 75% decreased, after 4 months of immunotherapy (intraveneous immunoglobulin). Each therapy costs 10000 euros and I have to do it every 6 weeks.... But it has given me my life back and insurance covers it.

As for the hypogonadal symptoms, I am fighting them with low dose testosterone gel, HCG, clomid and citicoline. I am having noticable improvement, but I am not back to normal.

Edited by Babis, 22 March 2012 - 06:07 AM.

[accux]

Babis have your erections improved as well?

I am 34 and after one year off Accutane, my severe ED persists and my lab tests show very low total T 273ng/ml and LH.
I have seen an Urologist (a friend of mine from high school) and he suggested I start on Testesterone Gel to help with the erections which will help with the anxiety as well. However it seems TRT may effect fertility so I have not started taking that yet.
I do not suffer from any other sides.

I was on 20mg and taking accutane every other day.
I remember taking alcohol while I was on accutane on a couple of occasions.
Initially I was reluctant to use accutane. I had scalp acne and my sister (who is an MD herself) recommended I start using roaccutane which my dermatologist prescribed. She had used accutane with much higher doses and did not have any problems. I curse the day I took the first pill.
I woke up one day (during the 9th month) and my penis was not feeling like before and I realized I was not getting morning wood for sometime. I immediately stopped taking the drug hoping things will improve. My situation worsened steadily during last year and now I can not get erections without Viagra.

After reading the news about propecia causing permanent sexual side effects I started searching the internet and found propeciahelp. I did my first search with "accutane" and I was shocked to learn that accutane and propecia might actually result in the same sexual sides and my low T/LH and severe ED is a typical symptom. I could not sleep that night.
I am also concerned after reading in propeciahelp that not having morning wood and frequent erections might actually cause structural damage in the penis because of hypoxia and having low LH for long might cause testicular atrophy.

I am too scared now after reading that people still suffer with sexual sides after 10+ years.
I was planning to get married and have kids and it is depressing to realize that it might not be possible.

Edited by accux, 13 May 2012 - 10:36 AM.

[accux]

"The articles I have posted above confirm that Accutane lowers pituitary hormones. "

Babis which article are you referring to here?
I have just spoken to an endocrinologist and looking at my low T and low LH he told me that the problem looks like "hypogonadotrophic hypogonadism".
I will be seeing him for further tests, MRI this week.
He mentioned that he is not aware of any studies confirming accutane affects on pituitary.
It would be good if I could show him the study you mention here.