I realize there has not been much research done about this condition, although there might be a specialist that is willing to try something outside the box at a place like the mayo clinic? Has anyone been there?
I looked into it, but before I setup an appointment I tried to see if they had any specialists in the androgen field. But they wouldn’t really get into specifics with me over the phone and wanted me to setup an appointment. Well I’m not going to fly across country for a general visit and waste more of my time and money. I already did that when I went to a “top” urologist and he couldn’t even say for sure if he believed PFS existed.
Yeah I know what you mean, I’ve seen Jacobs in NYC, done a water fast in California for 14 days, seen two endos here and 3 urologists. I don’t know what else to do. I’ve called Merck and the FDA multiple times and even had the president of a large pharmacy get info from merck, they weren’t willing to give much info.(probably because of the lawsuits) other than there original study results that are available to the public to him either. I setup an appointment with mayo clinic in hopes they have seen started to research this and know something more than these other doctors i’ve seen or are willing to try something experimental. maybe with allopregnanolone or something outside the box. who knows? I figure it’s worth a shot.
Depends if its worth it to you for peace of mind go for it. There isn’t really much else to do, I was in the same boat a little over a year ago. Looked into everything. Not a lot of hope except the hope that these studies lead us in the right direction which I think eventually they will. As far as finding a doc to try something experimental, you are facing an uphill battle there. Doc’s are spineless do to the legal system in this country and they will try experimental procedures, but not on someone who isn’t in acute risk of death.
Yeah, that’s what i’m afraid of. I don’t know what else to do, I don’t know how much longer I can take this lifestyle. I was an assistant golf course superintendent at one of the top golf courses in the world 6 months ago right out of school with a serious girlfriend and an incredible life, now I can’t think about anything but how bad this sucks and how to get better. Anyone else have any hope other than waiting on these studies to shed some light on the cause?
I had an appointment here in Mn. at the mayo clinic today, the Dr. doesn’t seem to think that my symptoms are related to testosterone but has ordered many related tests tomorrow. They did a chest Xray, not sure why? and a urine test. tonight i’m doing an oxygen test during my sleep and a sleep study later this week. But I have a follow up friday and see a urologist tomorrow. The dr. is testing a lot of stuff relating to hormones and certain enzymes. I hope they’re on the right track here. He did say they’ve seen this but most people recover within a month or two, and asked if how I knew for sure the medicine caused all this. But he seems to be determined to find the root cause and seems to believe me that this was caused by the medication. I read to him a couple of pharma epigenetics study’s and he had heard of this causing problems. I should know a lot more about what’s going on in my body in the next week or two.
What was the outcome?? Did the tests show anything?? Did the doctor arrive at what he believed was the root cause ??
Yeah I’d like to see an update as to what if anything they found?
Please do update when you get a chance- even if the doc ended up disappointing you. I’d be very interested to hear what went on/is going on at this point…
I didn’t go as well as I thought considering they are ranked number one in endocrinology in America. But they did test thoroughly and the results were as to be expected after a three week clomid treatment. My testosterone was higher than the range and Bioavailable T was twice the range, free T was high aswell, along with very high estrogen and low vitamin D. My Thyroid tests were low but in range. They really tested a lot of stuff but most came back normal, DHT was in the middle range. The past two weeks I was at a facility that offers ozone Autohemotherapy and the drs there seemed to have a better grip on what to treat and what symptoms are being caused by than any other dr, i’ve talked to. They gave me thyroid support prescription, liver detox herbs and shakes, adrenal support herbs and minerals and a personal trainer while I was there. I did 8 therapies of hydrogen peroxide intravenously, with eight Ozone/ Auto hemotherapies as well. The other herbal blends they gave me are for immunity and mental health/relation. Its a total of three shakes a day and around thirty pills give or take with a shot of korean ginseng. They also prescribed me to naltrezone which should nbe in the mail now. I don’t know what to expect but they truly cared about my situation and even called numerous drs in the area for input. I haven’t seen any benefits yet other than slight mental improvement, but hope this will help me in some way because the shrunken pecker and lack of libido is killing my will to live or fight this mess. I have tried about everything on the boards from a 14 day water fast to trt, clomid, ozone therapy, supplements, wellbutrin and eating healthy with some exercise. seen Jacobs and 5 other endos. four urologists, six gp’s and haven’t been to a place yet that treated by symptoms over blood tests on paper like this place, so that’s encouraging. But I hope to get some improvement in the next month or two. I know thus wasn’t exactly wht you were asking but I hope it helps.
Did you try to explain there has been microbiological research done showing this is an AR and AR related gene expression problem likely due to negative autoregulation? Maybe try talking them into mapping your gnome and/or epignome if that’s possible with particular attention to the AR and AR related genes. I wonder if they could check the expression of the AR and those related genes?
Even it it didn’t go smashing I think it’s great you went there. At the very least it brings more awarness with one of the top medical institutions in the world. If they were convinced the issue is epigenetic maybe they be interested in forwarding it along to their research department? When you think about it a research facility would get a population of subjects who potentially could pertain to three of the top new fields of medical research - epigenietcs, personalized medicine and regenerative medicine.
ps- Have you ever had 3 Alpha diol glucuronide checked?
For the penile and scrotum shrinkage and tightness A1 Alpha Blockers are really helping me a lot.
Yes you should get that done… see what they say when you come back with 3AdiolG of a puesdo Hermaphrodite.