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Babis

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  1. Dubya, the doctors offered to report it but they couldn't, because I took accutane in the US, but was diagnosed by them in Europe. (There were several hormone stimulation tests that are standard in European endocrinology, that US endocrinologists did not perform or know; as a result several diagnoses were missed).
  2. Some people here say there needs to be some scientific backing in these claims. Here they are: One hundred and twenty cases of enduring sexual dysfunction following treatment [isotretinoin, finasteride, SSRI] The International Journal of Risk and Safety in Medicine, Volume 26, Number 2 / 2014, Pages 109-116 http://iospress.metapress.com/content/1021h330k91qv844/?p=63d8a1d6d08e45a3b653392b64b60354&pi=7 Abstract: There have been reports for over a decade linking serotonin reuptake inhibitors, finasteride and isotretinoin with enduring sexual dysfunction after treatment stops. OBJECTIVE: To explore the clinical pictures linked to all 3 drugs. METHODS: We have selected 120 reports to RxISK.org reporting the problem and mined these for data on age, gender, drug of use, and impact of the problem. RESULTS: The data make it clear that the three drugs show extensive overlap in symptom profile, regardless of sex or country of origin. CONCLUSIONS: The availability of 120 reports from over 20 countries add to the case for the validity of the syndrome. This is severe and enduring condition can result in death. An understanding of its physiology and an approach to treatment are needed. By the way, after 4 years of workup and every endocrinology test available, my official diagnosis is hypogonadotropic hypogonadism and subfertility secondary to partial hypothalamic insufficiency, due to isotretinoin treatment. I hope this helps other people with problems: find a good reproductive endocrinologist (don't go to a generic endocrinologist, they are clueless) and get your hypothalamic function tested.
  3. Some fellas say there needs to be some scientific backing in those claims. Here they are: One hundred and twenty cases of enduring sexual dysfunction following treatment [isotretinoin, finasteride, SSRI] The International Journal of Risk and Safety in Medicine, Volume 26, Number 2 / 2014, Pages 109-116 http://iospress.metapress.com/content/1021h330k91qv844/?p=63d8a1d6d08e45a3b653392b64b60354&pi=7 Abstract: There have been reports for over a decade linking serotonin reuptake inhibitors, finasteride and isotretinoin with enduring sexual dysfunction after treatment stops. OBJECTIVE: To explore the clinical pictures linked to all 3 drugs. METHODS: We have selected 120 reports to RxISK.org reporting the problem and mined these for data on age, gender, drug of use, and impact of the problem. RESULTS: The data make it clear that the three drugs show extensive overlap in symptom profile, regardless of sex or country of origin. CONCLUSIONS: The availability of 120 reports from over 20 countries add to the case for the validity of the syndrome. This is severe and enduring condition can result in death. An understanding of its physiology and an approach to treatment are needed.
  4. Well, I haven't visited the website for ages and you probably do not need my reply anymore, but here are the articles again: Evidence for decreased androgens, neurosteroids and their receptors: Evidence for decreased androgen 5 alpha-reduction in skin and liver of men with severe acne after 13-cis-retinoic acid treatment. J Clin Endocrinol Metab. 1994 May;78(5):1064-9. Effect of oral isotretinoin treatment on skin androgen receptor levels in male acneic patients. J Clin Endocrinol Metab. 1995 Apr;80(4):1158-61. Excerpt: "The present study clearly demonstrated a decrease in androgen receptor binding capacity... The isotretinoin-receptor complex may interact with cis-acting response elements in the promoter region of regulated genes, repressing the gene transcription encoding for the androgen receptor, the gene transcription encoding for the 5-alpha-reductase activity, or both transcriptions simultaneously." Epigenetic side-effects of common pharmaceuticals: A potential new field in medicine and pharmacology. Med Hypotheses. 2009 Nov;73(5):770-80. Excerpt: " The following adverse effects have been reported to persist, even after discontinuing therapy, suggesting persistent (or perhaps slowly-reversing) gene expression changes and epigenetic effects: alopecia, arthralgias, ocular abnormalities, inflammatory bowel disease, keloids, osteopenia, hyperlipidemia, erectile dysfunction, and psychiatric disturbances. Isotretinoin is postulated to have complex effects on the brain and central nervous system." 13-cis-retinoic acid competitively inhibits 3 alpha-hydroxysteroid oxidation by retinol dehydrogenase RoDH-4: a mechanism for its anti-androgenic effects in sebaceous glands? Biochem Biophys Res Commun. 2003 Mar 28;303(1):273-8. Isotretinoin, tetracycline and circulating hormones in acne. Acta Derm Venereol. 1997 Sep;77(5):394-6. Effects of isotretinoin on male reproductive system. Lancet. 1994 Jul 16;344(8916):198. Erectile dysfunction during isotretinoin therapy. Actas Urol Esp. 2005 Nov-Dec;29(10):974-6. Acitretin-associated erectile dysfunction: a case report. Cases J. 2009; 2: 210. In animals treated with retinoids, testicular atrophy with spermatogenetic arrest was described: Toxicology, carcinogenicity, and teratogenicity of some orally administered retinoids. J Am Acad Dermatol. 1982 Apr;6(4 Pt 2 Suppl):652-9. Retinoid receptors involved in the effects of retinoic acid on rat testis development. Biol Reprod. 2001 May;64(5):1307-14. In humans treated with retinoids, pituitary hormones (including LH and FSH), testosterone and IGF-1 where suppressed: Isotretinoin influences pituitary hormone levels in acne patients. Acta Derm Venereol. 2011 Jan;91(1):31-4. Effects of chronic retinoid administration on pituitary function. J Endocrinol Invest. 2005 Dec;28(11):961-4. Short-term isotretinoin treatment decreases insulin-like growth factor-1 and insulin-like growth factor binding protein-3 levels: does isotretinoin affect growth hormone physiology? Br J Dermatol. 2010 Apr;162(4):798-802 13-Cis-retinoic acid decreases hypothalamic cell number in vitro. Neurosci Res. 2010 Nov;68(3):185-90 By the way, after an LHRH stimulation test and a number of other tests, my endocrinologist finally narrowed down the problem and diagnosed me with partial hypothalamic insufficiency (leading to low testosterone, low growth hormone, and low cortisol). So I have hypothalamic hypogonadism. The fact that accutane damages the hypothalamus is confirmed by the last four papers in the above list. (Of course, 99% of endocrinologists have never heard of this literature because they never prescribe accutane - dermatologists do - and dermatologists do not read endocrine journals).
  5. I do not see why you have to put up with this and passively accept your destiny.... If you want your health back, you need to fight for it. Rather than trying a bunch of supplements randomly, how about getting tested first, to see what you are deficient in? How about getting your hormones checked and getting treated by a true expert? Most endocrinologists and dermatologists know squad about hormones (I have seen many), but there is John Crisler in the US, or Pierre-Marc Bouloux in the UK, and others listed at http://www.propeciahelp.com/doctors who know what they are doing and may be able to help. There are also many tests to do http://www.propeciahelp.com/testing Have you had any of those done, at least those in the short-list?
  6. 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.
  7. 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.
  8. 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 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.
  9. 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.
  10. I just thought I owe an update. It may be slightly off topic, but tangentially related to the ED issue. As mentioned above, about 15 months ago, I developed symptoms of hypogonadism while on Accutane. 6 weeks after stopping, I tested low on testosterone and had inappropriately normal LH or Lutenizing Hormone (LH should be elevated by the pituitary in response to low T). Short-term testosterone therapy restarted my system and resolved symptoms. But 11 months ago, I developed several symptoms of dysautonomia or autonomic dysfunction. This time, my response to testosterone therapy was only partial. ED is one of the hallmarks of dysautonomia, so it seemed obvious that this was a second contributing factor. When I finally had autonomic testing done, it was positive. However, I was told that there is no cure, only symptomatic treatment. I was sent home with orders to drink more water and eat salty foods such as potato chips. I replied "which brand?" and "will you give me a prescription for the potato chips?" and I got a blank stare from the doc But things worsened, I fainted and got injured, and my doctors prescribed symptomatic medications, that only reduced some of my symptoms by 30%. I wanted to find and treat the cause, not the symptoms. When I asked my doctors for the cause they said "it is what it is". After reading lots of literature, it seemed that one of the few potentially treatable causes of dysautonomia is autoimmunity, so I asked my doctors if my problem was autoimmune. I was given a firm no. I kept researching and found the Autoimmune Dysautonomia Evaluation Algorithm. I requested the test from my doctors, who one after another denied. They almost convinced me that that my problem was not autoimmune. But I wanted to cover all corners so I decided to just keep going to different doctors until someone would agree to do the test. After 10 months and 10 doctors, someone finally ordered the test. Surprisingly, the result was positive. (The funny part is, even that doctor told me the results were negative; I noticed the positivity myself when I asked for a copy of the lab report.) In any case, the result was positive for the alpha-3 Acetylcholine Receptor Ganglionic Autoantibody, which indeed suggested neurologic autoimmunity. I thought I finally had a clue, but my doctors did not think much of the result. They claimed such antibodies have not been proved to cause direct damage to the autonomic nervous system and that immunotherapy would be contraindicated. However, the Mayo laboratory interpretation of the test, as well as some literature stated exactly the opposite. This antibody is one of the few that have been actually shown to cause direct damage to autonomic ganglia. It occurred to me that I should not waste more time waiting for my buffoon doctors to get smarter. I e-mailed a neuro-immunologist at Mayo clinic, who offered to see me asap. I just got back from that trip. The neuro-immunologist confirmed that this antibody is directly causing autonomic neuropathy and that 60% of patients respond to immunotherapy, and he provided guidelines on how to administer such therapy. Because it requires injections, testing and monitoring, it cannot be done now (since I am about to change job and continent). I hope I can find some expert in Europe willing to administer the therapy. Accutane, the H1N1 vaccine and viral infections are all known to trigger autoimmune neuropathy. There is no way for me to tell which one of those was the culprit. More likely than not, it was all of the above plus genetics. By the way, since I have been in a catabolic state for months, I asked my neuroendocrinologist to test my IGF-1 level. (This peptide is secreted by the pituitary and stimulates the liver to produce growth hormone.) It just came back low. This is a second strong indication for a pituitary problem, in agreement with articles posted above, notably Effects of chronic retinoid administration on pituitary function Short-term isotretinoin treatment decreases IGF-1 and IGFBP-3 Isotretinoin influences pituitary hormone levels in acne patients. 15 months after symptom onset, I finally have clues for some of my problems. Now the question is what to do about them.
  11. Thanks a lot showbarka. It's nice to know someone benefits from this info. I discovered the truthfulness of these side-effects (and more) the hard way. I cannot go back and prevent my past self from taking accutane. I can only try and cope with it any way I can, and exchange info with others. Also, after consulting 2 urologists 3 endocrinologists 2 neuro-endocrinologists 9 neurologists 1 neuro-ophthalmologist 1 ophthalmologist in Europe & United States, and after having tests which are too many to mention, I find the statement "Stop obsessing & get some help for you ED instead of just bitching about it" a tad ludicrous. And by the above specialties you might get the hint that hypogonadism was the first problem in a very long chain of more serious ones.
  12. @annayake Thanks for this list, it looks very well thought of. There are indeed research studies backing up a lot of this, especially carnitine. I find glyco-carnitine to be better tolerated, since regular L-carnitine gives me heart palpitations and PVCs. I am a little hesitant about the flax seed and the soy for men, since they are estrogenic and accutane itself is anti-androgenic. They might be good for women though.
  13. Does not answer your question, but I have heard good things about a spironolactone-ketoconazole topical with a liposomal delivery system for male-pattern baldness. It can be ordered from any compounding pharmacy.
  14. Yeah, I've also used Minoxidil but it seems like renting hair. You only get to keep the hair as long as you take the drug. Perfect for the manufacturer, not for the consumer. There is a spironolactone-ketoconazole cream that John Crisler, DO (not a dermatologist but a male-hormone expert), suggests as a very simple effective hairloss treatment for males. You can order such a cream to be made by a compounding pharmacy.
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