1. Today
  2. This is the title of the Baylor study, "Genetic and Epigenetic Studies on Post-Finasteride Syndrome Patients." Absolutely no information on it since its launch in 2013. This seems a little dead in the water to me. They mention just one researcher, he is also a doctor that can be contacted. Someone could possibly even make a appointment. Dr. Mohit Khera. He has a email and phone number listed. What are they looking at? This study will evaluate parameters of peripheral sexual function in patients with PFS. This study will uncover the underlying biological mechanisms related to the wide array of symptoms in PFS patients which closely match those of the androgen deprivation syndrome. This systematic investigation will help identify the genetic footprint of PFS and the array of deregulated androgen dependent functions. This study will elucidate the hormonal, genetic and epigenetic molecular mechanisms of the PFS. This study will provide leads for the development of mechanism-specific therapeutic strategies. You have a newer study. What are they looking at? http://www.pfsfoundation.org/news/possible-epigenetic-changes-pfs-patients-focus-new-clinical-study/ SOMERSET, N.J., Jan. 29, 2018 – The Post-Finasteride Syndrome Foundation today announced Phase II of the clinical research on post-finasteride syndrome (PFS) being conducted at the University of Milano. behavioral parameters, and alterations in neurogenesis, neuroinflammation and neurotransmitter pathways involved in the control of sexual function, as well as possible epigenetic changes in 5alpha-reductase. Possible changes of the gut microbiota composition will also be considered. Reported symptoms include: loss of libido, erectile dysfunction, depression, suicidal ideation, anxiety, panic attacks, Peyronie’s disease, penile shrinkage, gynecomastia, muscle atrophy, cognitive impairment, insomnia, severely dry skin and tinnitus. possible epigenetic changes in the 5-alpha reductase enzyme. Sounds all too familiar.
  3. Yesterday
  4. I would think you would have to have a pretty good formal diagnosis for a type of treatment that kills the immune system with chemo drugs and replaces it with stem cells. Speaking of something like MS, most if not all patients DO show real evidence of this on brain MRIs. Other than hormone levels what has anyone found? Seems like alot of subclinical symptoms that get brushed off as coincidence. As far as genome testing is there anything out there that is really a better value then 23andme at this point? For example I looked at Genos that cost 500 dollars and does whole exome sequencing, but wasnt even as thorough as 23andme and 23andme posted a lot more results that had meaning in promethease. is seems like looking at whole genetic sequencing and mutations wouldn't mean much without some data to back up what could be considered a pathogenic mutation. Speaking of that you have done 23andme I assume, and have promethease?
  5. Last Week
  6. I can look back on photos and have noticed an unusually pale face post Accutane. Some others have noticed this as well. Along with facial flushing, lightheadedness, that tells me all I need to know about blood flow. This is where the fatigue might be coming from as well. It feels like your brain but the source of this problem might not be coming from your brain. Muscles push blood flow. Starting with your heart. Then picture a bunch of workers in your blood vessels that continue to push this blood flow and send nutrients. You start to have problems here you lose oxygen and nutrient supply. Maybe started with the hair loss. And boy that was a long time ago. Ive seen other possibilities with this, when various parts of the body become affected. Its called "Organ Stunning" and this could maybe happen just about anywhere. Different disease process here but the idea is similar. When you look at kidney function, some of these processes that start to go wrong might be related as well. https://www.homedialysis.org/news-and-research/blog/89-hearts-in-the-crossfire-standard-hemodialysis-stuns-organs-but-there-is-hope
  7. What do you hope to test for? I've had the MRI and the MRA without contrast. Anything more then that I know is going to take a lot of convincing. We know someone on here (Jorcruz) had a lumbar puncture that had alot of head pressure and they didnt find anything. Would you try to push for the autoimmune dysautonomia test? A lupus anticoagulant panel is something a neurologist would order as well when it comes to looking at blood flow. I have been positive once and very borderline for this on a few occasions. More information on this. Autoimmune Autonomic Ganglionopathy (AAG) is a very rare form of dysautonomia in which the bodies own immune system damages a receptor in the autonomic ganglia (part of the peripheral autonomic nerve fiber). It is often associated with high titers of ganglionic acetylcholine receptor antibody (g-AChR antibody). Dysautonomia International: Autoimmune Autonomic Ganglionopathy ... www.dysautonomiainternational.org/page.php?ID=124
  8. Thanks for your detailed posts. Just thought id pull some possible useful information here to keep in mind. @mariovitali I see why you still have to keep the liver in mind as well. Hypogonadism in chronic liver disease: impaired release ... - NCBI - NIH https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1341976/ by P Bannister - ‎1986 - ‎Cited by 55 - ‎Related articles Abstract. Alcohol abuse leads to impotence, infertility, and feminisation. Patients with chronic alcoholism may have impaired hypothalamic-pituitary function. The release of luteinising hormone was investigated in men with alcoholic cirrhosis with and without hypogonadism and controls. Blood was sampled every 15 minutes ... I know I just jumped back to hormones but I thought these thoughts were at least worth mentioning.
  9. I have fought with this for many many years. Yes my sinuses feel blocked. Yes my ears feel full. I have seen many ents. I had a sinus ct scan years ago, and they did see some sinus thickening, and I thought finally this is it. Then I get to see the ent on a follow-up appointment and he tells me its not that bad. Didnt suggest any major treatment. Throw some antibiotics at it. Augmentin is normally the first choice. Have you tried this? there wasn't resolution for me. You could really go at it and try for a extended amount of time say 30 days, but I dont know. I think they also normally say chronic Sinusitis isnt caused by a bacterial infection. I tell them about my ear fullness and Ive taken hearing tests. My hearing is normal. They dont see signs of a infection when looking into my ears. They have scoped my throat as well with a camera. So the ear thing gets labeled as tinnitus by the ent. One thing im now remembering is him recommending Ginkgo Biloba. What does it supposedly do? Increase blood flow. The ear fullness was very gradual for me. It affected my left ear first. then the same started happening with my right ear. sort of similar to the eye pressure. Youve been around awhile you remember the poster that came on and said he was diagnosed with collapse of the sinus structure? Some sort of Vasculitis as well I believe. His parents were considering taking him to Mayo. Thats how I picture this problem. muscle and bone weakness in the face that starts to collapse the sinuses. Then yea, your going to get some fullness and thick mucus that gets trapped, maybe even along with earwax. Some of the studies though on Accutane have shown numerous changes in bacterial colonies, the sinuses was one of them.
  10. Ive seen two neurologists about it myself. No answers. Just more questions. One asked if I did drugs when I was younger. So some people have pressure around their eye. some people have had pressure in their head. or headache you see studies of reduced cerebral blood flow, so maybe not just a headache. Also Brain inflammation, lost nerve connections. So what if some people develop pressure around their heart? Now you just had someone post low cortisol. So you have people with low, high, normal. Mine was right in range last time I checked. Yes hormones are being affected, But if we continue to focus solely on hormones, that's when this continues to go in circles.
  11. Last Month
  12. Well I tried. Only to ignorance. Am I in the twilight zone? I just got done posting this to @flynn I have directly posted this to you multiple times. If this is your level of memory recall or comprehension you have no business criticizing any of my posts. We are done. MRI BRAIN WO CONTRAST - Details Study Result Impression 1. No acute intracranial findings noted. 2. Volume loss of brain parenchyma is seen, advanced for patient's age. No intracranial mass lesion or mass effect or midline shift noted. Narrative PROCEDURE: MRI BRAIN WO IV CONTRAST REASON FOR EXAM: Headache COMPARISON: CT head, 9/10/2016; MRI head, 8/10/2013 TECHNIQUE: Multiplanar multisequence imaging of the head was performed without intravenous contrast. FINDINGS: There is no restricted diffusion or acute infarct noted. No other acute intracranial findings are seen. Gradient-echo imaging reveals no intracranial hemorrhage or blood products. There is no focal parenchymal edema or mass lesion or mass effect or midline shift or extra-axial fluid collection noted. There is mild volume loss of brain parenchyma, advanced for patient's age. No focal parenchymal signal abnormality identified. Pituitary gland is within normal limits. Posterior fossa structures are within normal limits. There is thinning of the body of the corpus callosum. This finding is stable compared to prior MRI, 8/10/2013. Paranasal sinuses and mastoid air cells are clear. Orbits are within normal limits. Test Name DYS1 DYSAUTONOMIA EVALUATION SERUM POSITIVE Test Result SCANNED REPORT INTO EPIC
  13. Refuses? I have already spent more time with you then most. Could you give me an example of what your talking about? And be specific. I have made a point to simplify things as much as I possibly can and do try to explain things but im not trying to spend all day on here. I have a full time job. One thing I noticed is that you are extremely sensitive. This is probably something alot of you deal with in real life as well am I right? Overly aggressive when the situation doesn't call for it? Ive been there. I know its hard with what some people are dealing with but we need cool heads going forward. Dont let emotion dictate thoughts.
  14. I have your eye symptoms. One eye has always been worse. It was more recently followed by stinging nerve pain that shoots right into the eye, and possible loss of vision. I've seen the possible associations and speak from experience. Not just or necessarily MS, but you can look at metabolic diseases like diabetes as well. If your getting a brain MRI they probably already have some associations in mind, it will also show your pituitary gland and if your sinuses are clear. My sinuses were clear and my pituitary gland appeared normal. From what I've seen so far, I might be the progression. I might be the worst case scenario. Obviously what happened or is happening is more than an annoyance. Most of you are still relatively young or at least in your 30s. Im trying to catch things before it might have the potential to become a more serious problem. If i am aware of some things that others aren't, then yes they should be made aware. And yes i know some of the things I say are not a pep talk, but I am well beyond that at this point.
  15. Unfortunately my MRI wasnt. I've had 2 mri's some years apart, the first Mri wasnt even normal after they went back and looked at it years later, even though they told me it was at the time. How many years post tane and what kind of dosage and duration were you on again?
  16. I would go right back to walkinlab and order the am cortisol test then. You are now in the unfortunate game that many have played for years. Including myself. Everyone thinks they know what it is, until its not. (I do still believe in the possibility of some "it" factors that have a trickle down effect.) There is some evidence though, you can also look at @Babis posts, one of his diagnosis involved the pituitary. The effect of different doses of isotretinoin on pituitary hormones. https://www.ncbi.nlm.nih.gov/pubmed/25721216 but again this is just a different hormone, same scenario like I just posted. You'll find ranges all over the board post accutane. Official Accutane Thread http://www.allthingsmale.com/community/members/clayton95.24136/ Clayton, did you test your estrogen as well?My results show an elevated cortisol level (yours is almost at maximum also), and a high estrogen.Do you suffer from hair loss? Very surprised to see high DHT, as my understanding is this would be very low? @flynn@Dubya_B There is this as well. Vitamin A Increases DHT By Enhancing 5-alpha Reductase http://www.ncbi.nlm.nih.gov/pubmed/10423178 Administration of all-trans-retinoic acid (ATRA; 60 mg/kg daily for 3 days) to male rats increased the rate of 5alpha-dihydrotestosterone (5alpha-DHT) formation from testosterone in microsomal fractions in vitro. The formation of androstane-3alpha,17beta-diol from testosterone was also increased because of the higher concentration of 5alpha-DHT produced in microsomal incubations. it was found that administration of ATRA to gonadectomized male rats produced complete feminization of the enzyme. What is the main androgen produced by the testes? Testosterone. These findings suggest that ATRA is a novel positive regulator of the 5alpha-reductase that in combination with the removal of circulating androgen, which normally suppresses 5alpha-reductase levels, feminizes the expression of this enzyme in rat liver Urban Dictionary: mindfuck https://www.urbandictionary.com/define.php?term=mindfuck an idea or concept that shakes one's previously held beliefs or assumptions about the nature of reality.
  17. Worst case scenario. The progression. Blood flow. Nerve Damage. Muscle Damage. Ischemic optic neuropathy is damage of the optic nerve caused by a blockage of its blood supply. The scary thing is some of this starts to get into the Realm of MS. sometimes optic neuritis is a precursor to development of MS, so if you have optic neuritis, your doctor may recommend an MRI. If imaging shows "white matter" lesions indicating damage to myelin in nerve fibers, there is a 56 percent chance of developing MS within 10 years. But even with normal results, a person with optic neuritis has a 22 percent chance of developing MS. Maybe it's just some sinus pressure. Id make sure you see that mri report.
  18. I dont think this stops at hormones to be honest with you. People have chased this for so many years. Peripheral Nervous System Involved in Post-Finasteride Syndrome Patients with Severe Erectile Dysfunction, New Study Demonstrates for the First Time http://www.pfsfoundation.org/news/peripheral-nervous-system-involved-pfs-patients-severe-ed-new-study-demonstrates/ The nervous system might be affected. This is true. I have a blood test to prove it. All of the blood tests done on these patients though have been conflicting when you look at what PFS sufferers are posting. Just like Accutane. People have high Testosterone, low Testosterone, high dhea, normal dhea, low dhea, high estrogen, low estrogen, normal estrogen. Now you have high fsh, low fsh. Something going on might be taking hormones for a ride, but they are not necessarily doing the driving. Im looking at regulators of steroidogenic enzymes.
  19. @flynn Good possible connection here. https://www.ncbi.nlm.nih.gov/pubmed/1388045 "There was, however, a specific, significant inhibition of progesterone-induced FSH but not LH release when the 5 alpha-reductase inhibition was sustained throughout the afternoon of the gonadotropin surge." Surge vs regulatory process. People that have dabbled in 5ar inhibitors seem to report a Surge followed by a depletion. Maybe Until nothing is left or becomes less and less. Hence cycling that many have tried and ultimately failed. A "Surge" of Acne when starting Accutane. This could be a bacterial surge and/or surge of hormones. Except I never felt a hormonal effect back then when having this surge of acne.
  20. I think its real simple. People that are serious about this treat it as a part time job. You take a couple minutes every night to look through the posts or post what you feel might be relevant information yourself. In that regard this is could be considered a news feed for all things Accutane. Every day I come on here I want new information. I want to keep things moving. "the thread is constantly interrupted by contrasting/unrelated/irrelevant posts." This isn't up to the individual to decide in my opinion. Everyone has their own thoughts or is sort of doing their own thing on here. Which is fine as long as it doesn't become abusive. Everyone though should be allowed to have their thoughts cross-checked because there have been some ideas out there that might do alot more harm than good. Some of this has been generated from forums like this, thats why im real careful about recommending any self treatment. It's also why you can't avoid the science @TrueJustice
  21. Maybe its best to go ahead and mention any possible significance for people to be aware of. Including those that haven't had this tested yet or to be aware of some blood markers that might change in the future. Nice job on the forum. I think the end game will be to have all this information compiled and collected.
  22. I'm running on a pretty standard desktop setup on a 1200p monitor, 24 inch, zero zoom. The posting space just seems a little squished to me now because of the recent topics ticker. It takes up such a small amount of space compared to how it reformats the whole page. Its not a big deal to me having this ticker, but I guess It does make the community feel more alive and active. Could this go horizontal instead of vertical? to give you an idea of space i'm looking at 26cm posting space on another popular website forum vs 22.5cm on this one now. As far as the new theme I think people will just get used to and not think much about it. The colors just seem a little off like there was a change in color temperature. Anyways, thanks for the forum though. Really appreciate it.
  23. So do people that take excess copper or zinc have post copper/zinc syndrome? or one of the founders of propecia help that had serious problems after taking milk thistle does he have post milk thistle syndrome? Who's the guy on hack stasis again recommending copper and/or zinc? Ive already spotted some people having some problems on there, looking through it briefly. What Accutane did might not be specific to the drug itself. Cations inhibit specifically type I 5 alpha-reductase found in human skin. Sugimoto Y1, López-Solache I, Labrie F, Luu-The V. Author information Abstract Steroid 5 alpha-reductase catalyzes the reduction of testosterone into the very potent androgen dihydrotestosterone. Previously, we showed that human type I 5 alpha-reductase is expressed mainly in the skin, whereas a type II 5 alpha-reductase is more specifically expressed in the prostate. To assess the possible differential effects of various cations on the two types of 5 alpha-reductase, we constructed expression vectors and transfected them into SW-13 cells, a human adrenal carcinoma cell line containing negligible endogenous 5 alpha-reductase activity. The expressed 5 alpha-reductases were analyzed for their sensitivity to Li, Ca, Cd, Cu, Mg, Mn, Ni, Zn, and Fe. The results showed that type I 5 alpha-reductase was strongly inhibited by Cd, Cu, and Zn and moderately inhibited by Ni and Fe, with 50% inhibitory concentration values of 0.9, 1.9, 2.0, 169.2, and 174.3 microM, respectively. In contrast, type II 5 alpha-reductase activity was inhibited only by Cu, with a 50% inhibitory concentration value of 19.2 microM. The data showed that cations could specifically control 5 alpha-reductase activity expression, which is more strongly inhibited in a target tissue, especially the skin.
  24. Is this free software? Id like to see how this is being looked at. I have another snp to look at. It has to do with Vitamin K cycling. rs9934438 Vitamin K epoxide reductase complex subunit 1 (VKORC1) polymorphism and aortic calcification: the Rotterdam Study. https://www.ncbi.nlm.nih.gov/pubmed/18218987?dopt=Abstract Persons with at least one T-allele had a statistically significant 19% (95% CI 2 to 40%) risk increase of calcification The T-allele of the VKORC1 1173C>T polymorphism was associated with a significantly higher risk of aortic calcification in Whites. How about yourself on these? Im TT (or AA) Persons with a T-allele have a lifelong reduced activity of VKORC1. Effects from this are expected in extrahepatic proteins such as MGP because γ-carboxylation here fully depends on VKORC
  25. @mariovitali I know you have alot of 23andme data Have you looked at these genes? Apolipoprotein E ApoE status is technically defined by two different SNPs, rs429358 and rs7412. rs7412 *** rs429358*** Apolipoprotein E (ApoE) is a class of proteins involved in the metabolism of fats in the body. It is important in Alzheimer's disease and cardiovascular disease. Lipoproteins are molecules composed of fats and proteins. rs429358 is the main gene tested for the e4 variant from 23andme IM 3/4 APOE Genotype. Anyone else? Lipid biosynthesis (shown to be dysregulated during Accutane and Propecia treatment) Protein involved in the synthesis of lipids, a diverse class of compounds which are insoluble in water but soluble in organic solvents. They include fats, oils, triacylglycerols, fatty acids, glycolipids, phospholipids and steroids. Warfarin dose related to apolipoprotein E (APOE) genotype. https://www.ncbi.nlm.nih.gov/pubmed/15952022 Previous studies have shown that individuals carrying the APOE*E4 allele have a faster uptake of lipoproteins into the liver and lower levels of circulating vitamin K than others.
  26. Glucose, Serum 93 mg/dL 65 - 99 DYSAUTONOMIA EVALUATION SERUM Positive Tested positive for acetylcholine ganglionic neuronal antibody HDL Cholesterol 43 mg/dL Reference is greater than >39 This is very low(major cardiovascular risk factor) the higher the better, should be in the 60s CARDIAC STRESS TEST Abnormal ECG response to stress. 2 mm flat depressed ST segment in leads III occuring in Stage 2 using Bruce protocol. The patient exercised for 11 mins. Persisting up to 3 minutes into recovery. EKG 12-LEADPOSSIBLE LEFT ATRIAL ENLARGEMENT Dilute Russell Viper Venom Screen ABNORMAL PHOSPHATIDYLSERINE AB (IGG) 19 H MRI BRAIN WO IV CONTRAST There is mildvolume loss of brain parenchyma, advanced for patient's age. There is thinning of the body of the corpuscallosum. This finding is stable compared to prior MRI, 8/10/2013. @flynn This is what im talking about when looking at painting a picture.
  27. These are pretty direct connections. The rest I will get into later when I have more time. Impact of 6-month course of 1 mg finasteride tablets on levels of lipid profile in men with androgenic alopecia http://www.endocrine-abstracts.org/ea/0029/ea0029p277.htm Atherosclerosis constitutes one of the most frequent diseases and one of the important predisposing factor for atherosclerosis is lipid profile change. Findings: A significant decreases in fasting plasma level of HDL was observed after 6 months of therapy (P<0.001). Moreover, a statistically significant rise in fasting plasma level of triglyceride was observed after 3 months of therapy Conclusion: Our study demonstrated for the first time that using 1mg finasteride tablets to treat androgenic hair loss may lead to complications of the lipid profile through reducing HDL and increasing total cholesterol. Finasteride may decrease dihydrotestosterone and increased testosterone this change in lipid profile may be due to testosterone elevation by using finasteride. "That isotretinoin can cause worsening of lipids with significant increases in total cholesterol and triglycerides is well known," he commented; however, "the mechanism of retinoid-associated dyslipidemia has not been completely elucidated."Aug 22, 2006 Accutane linked to lipid changes. - Medscape https://www.medscape.com/viewarticle/788668 You can look at various examples of vascular disease and nervous system deterioration going hand in hand. Again this is coming directly from the Accutane pamphlet. "May cause blood vessel inflammation." We know what people have looked into extensively already, I have an idea what they haven't. All of this isnt guaranteed to stay true over a period of time, but it might start to paint a picture.
  28. For me, I'm not looking at circulating levels of retinoic acid at the time of exposure being the biggest issue. (A higher than necessary dosage would have a greater effect though im sure.) How would this relate to PFS sufferers that didn't take Accutane? I want to go back to what I posted a few days ago. Genetic Cardiovascular Markers This is one of them. ApoE Genotype ○ The ApoE genotype test assesses your risk of heart disease, as well as your response to different amounts of dietary fats. There are six APOE genotypes: 2/2, 2/3, 3/3, 2/4, 3/4, and 4/4. If you have the 3/4 or 4/4 genotype, you may have a higher risk of heart disease This is when it starts to get pretty interesting. This is also known as the Alzheimer's Gene.
  29. @Babis This was one of Babis last posts on here. " 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." Examples of symptoms of hypogonadism with underdevelopment of the Gonads (testicles and ovaries) include delayed, reduced, or absent puberty, low libido, and infertility. What if this was something you could turn back on? Its not necessarily age dependant. These are different causes, but same idea. Catch-Up Growth after Hypothyroidism Is Caused by Delayed Growth Plate Senescence https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2276705/ Catch-up growth is defined as a linear growth rate greater than expected for age after a period of growth inhibition. Sometimes I picture what happened as a fd up version of peter pan for some people. Never grew into adults. Never matured both mentally and physically. You can look right on the pamphlet, it says Accutane may cause "premature closure of growth plates" Excessive mineralization with growth plate closure in rats on chronic warfarin treatment. Speaking of mineralization, just like you want calcium in bone, the same goes for the other minerals. Bone homeostasis might regulate mineral homeostasis, not just calcium.

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