I m sorry to hear that Mew.
But i need to rephrase one sentence: Many symptoms WORSEN depending on what food i eat or stress related. Sorry, english is not my first language.
In the first two years i had penile shrinkage on most days. Now, on most days it looks normal. Loss of libido is still a major problem for me. Even on the days i am feeling better, i have maybe 15% of the sex drive i used to have. On these days penis seem a little more sensitive. But it also fluctuates, there are days i have zero libido and i cant feel my penis. Morning erections also vary a lot for me. Some days a half erection, some none, and some a normal one. Spontaneous erections are still absent. But i am able to get an normal size erection by manual stimulation on most days.
I just had a couple of bad days this week. I was having to take Omeprazole daily for Acid reflux and when i stopped it my metabolism took a couple of days to return to where i was prior to Omeprazole. I couldnt sleep well, erection was bad, depression, anxiety, skin rash. After three days i am better. So my point is when my body goes under a stronger stress, my symptoms worsen. I need two or three days to improve. This has happened many many times in five years. So maybe my body is still capable of producing some of the stuff i need but not enough to make me feel normal. The production of this stuff (which we dont know what is… DHT? Adiol G? An enzime that makes body sensitive to DHT?) gets affected when my body is stressed. Then after the stress is gone, i feel like it slowly builds up and i improve. Thats how i feel, sorry i really dont know another way to describe it. This fluctuation gives me hope it is reversible. For all of us.
How many guys has Dr Jacobs seen for this? Others outwith this forum?
Has anyone got ultrasounds done to check out our livers for “liver Cirrohsis”.
I’m at complete awe right now…My hormone profile and thyroid profile is normal and I’m still sick. I’m going to start a liver cleansing regmine and see where to go…
The liver is a very forgiving organ and although damaged by fin I doubt this would still be a factor a long time off unless yuo are a serious alcoholic. I probably damaged mine more a bit drinking a lot between quit and crash but it’s not any kind of answer now.
Basically those of us with low t levels and accompanying symptoms that last for ages have to accept we have acquired some sort of resistance to androgens and move forward from there, however difficult and scary it is to accept as there seems nothing can be done.
Has anyone tested for copper, im going to this week.
letsconvenience did - and came back positive.
jeez, if copper toxicity were an answer for some us, that would truly amazing. chelation therapy anyone? It’s more effective and faster than any oral liver/system cleanser regimen. I’m speaking from experience.
please keep us updated if you’ve identified copper toxicity and plan to begin treatment/regimen.
Once again, can we keep this thread on topic (ie, in relation to what Dr. Jacobs has written).
If you wish to discuss other things like “liver cirrhosis” and “copper toxicity”, pls do so in other threads that already exist on those topics. Cheers.
Recently went to Dr. Jacobs.
He has a lot to offer. I would like to be able to explain more but he and I only talked for about an hour straight.
Great guy,
and seems like the one.
Great office space, demeanor, and location.
Again, his office and space is amazing, a great place to work on our issue.
I would encourage people to go see him.
We should also just gather the cash to try and pay him to simply spend some long nights in his office researching, reading this forum and all the information, researching, writing, and devising some plans of action to help us.
Go visit Dr. Jacobs because he apparently seems the most capable of helping our case because of his background in neuroscience as well.
NYC is a great place to visit too. 5th Avenue and all the flagship designer stores are just a block away too.
Mew, hop on a plane and go pay him a visit. Anything you say means nothing until you start working with someone.
We visited the forum while talking in his office, breezing through articles, brain-storming, thinking out loud, and talking about all the various factors that could be involved, as well as plans to try to test for and tackle every possible question mark. The guy has a great bit of energy and enthusiasm for tackling our situation it seems. He seems to have a great ability to multi-task and be flexible and open-minded. He also seems to be very under control and an easy person to access, keep in touch with, and work with.
I look forward to any updates!!
Greetings fellas!!! 
lol welcome back boston 
Very nice Boston…I think Dr. Mariano is another great option too…He seems to have a vast understanding of the human body…
Dr. Jacobs has updated his blog with a new post.
It has been added to the first post in this thread (October 14 – “Another Piece of the Post-Finasteride Hypogonadism Puzzle?” – blog.alanjacobsmd.com/alan-jacobs-mds-blog/2010/10/another-piece-of-the-post-finasteride-hypogonadism-puzzle.html )
Looks like awor was ahead of the Doctor on this one. Good job…
Bad news, as ever…
The way I see it, the advancement of a diagnosis is never bad news.
Guys, keep in mind this has not been proven yet, it is simply his thoughts on the matter and wondering if/where the issues may lie.
That said, he is certainly more qualified than any of us to make such statements, and his insights are of absolute value to understanding and investigating this problem further.
The fact he is focusing on the androgen receptor and epigenetics is a crucial point, but wether these areas are the absolute root cause still needs to be tested for. That is the next step – getting research scientists interested enough in this problem to undertake the type of testing we need to get more answers.
How does this explain that when i quit i was feeling great for 2 weeks then suddenly i was hornier than ever in my life and sex was all i thought about for 3 weeks while feeling completely dead in all aspects but sexually. I could hardly move with out hurting yet im having an erection?
I dont belive this is the awnser to our problems. Our problem involves so much more than this explains imo.
Think its great that finally someone is taking our problems seriously tho and we will eventually find a cure for this crap. Ive had days and weeks even of complete recovery so im sure we will be okay in the end!
common epigenetic effect interacts with a less common variant in the androgen receptor gene CAG repeat profile to cause its syndrome of crippling persistent post-finasteride hypogonadism.
I dont think this explains how are condition progressed and not all of our symptoms either.
From his tone however, it seems as if he maybe hasnt had much luck lately in treating people. I hope this is not the case as I am going to be seeing him soon.
Mikey428, would you mind briefly sharing what specifically you are seeing Jacobs for? (I have no way to privately message you) He is local to me and I am interested in seeing him about my ongoing prostate/ejaculation issues that urologists seem to be shrugging off.
Also, in general, is this something that Endos/Neuro-Endos will deal with? Am I barking up the wrong tree? I need to have initial blood work done, should I see an endo before or after to point me in the right direction? I’ve been reading all over the forums, but I’m still kind of lost as far as first steps to take now that I realize my issues are likely related to PFS.
I don’t want to paint all cases with the blood to say that it is more neuro issue than androgenic.
I have problems (well am devastated really) for 4 years and even now, 2 days of Tribulus improves my libido and erection considerably. Just that after a certain point it does not work…
Mark