Dr. Alan Jacobs, MD - Neuroendocrinogist, NYC USA

Tim -

If that is the only way to genuinely fix it, then that is what has to be done. I think id rather take a shot every two weeks (and i think in europe there is a shot called Nebido which is every ten) then have the symptoms of low testosterone. Jacobs sees generalized hypogonadism from a plethora of different types of people, this does not only happen from finasteride, they simply do not know the underlying issue yet with finasteride hense why the accepted fix isnt yet here. The accepted fix, however, for those from hypogonadism from stress, epilepsy, trauma, or andropause is testosterone.

Sorry for stupid question… but once on TRT thats it right? You’re on it for life?

one shot every two weeks? guys are getting shots every two days, at levels which have their own host of sides. In some cases its not enough to cure ed as cialis and viagra is also needed.
In some men it is for life.

Jacobs implied a trial can be done which would not shut down your own endocrine function before permanent trt to see if there is symptomatic relief. but, again, if that were the last option it is still more desirable then low testosterone.

Ah yes, golf. I do believe that is also one of Shippens protocols.

What I cant figure out for me is that only my penis is really effected by this. I dont have really any other mental sides to speak of.

It might be important to carefully to what Jacob’s office and Shippen’s office are saying. They are saying that they have been able to >help< , not cure, the symptoms of this syndrome. I believe Shippen claims to have helped three out of four sufferers on average.

Understand that this >help< might be some easing of impotence, some easing of brainfog, raising libido levels above absolute zero, return of morning erections, minimizing adrenal exhaustion symptoms, etc. etc. These are all good things for us, but having visited some of the doctors listed on this site, and a couple of field leading experts not or rarely mentioned on this site, do not expect to be cured.

One also has to be careful of the “rising testosterone level effect”, see the thread awor started on this. Many of use have felt ~ 80% cured during the weeks in which our T levels were steadily rising, either from clomiphene, or T shots, or T gels, only to find that a saturation limit of sorts is reached, where after relief of symptoms is only in the neighborhood of 40% or less. Certain doctors that are new at this may think they have found a long term therapy (due to having lots of patients on the rising rate portion of the slope), only to watch as the therapy’s effects wear off or lessen later. The key here might be what free, or loosely bound, T levels are doing, as opposed to total serum levels.

That said, I think the very last thing to try are testosterone shots, particularly at the dosages some are using. A better order of things to try for a “typical” PFS case (w/secondary hypogonadism serum T, & LH levels, and many of the standard symptoms) would be clomiphene, then hCG, then Arimidex at >very< low doses (possibly in conjunction with one or both of the previous ones), then topical testosterone (realize that after 12 to 18 months these later routes may become a lifelong commitment as your testicles atrophy), then injections. And if injecting, consider once a week T shots along with hCG shots later in the week, to prevent testicular atrophy. These are personal opinions only, formed after several years of study on secondary hypogonadism treatments, and two years researching PFS; I am not a doctor and use any of this information only under the care of a doctor that has experience in these matters, and only at your own risk (particularly where Arimidex or other estradiol inhibitors are concerned).

Trust me, going from intercourse once every four to six months, to two or three times a month, makes a big difference in quality of life. Being able to run a mile without stopping, and without that workout being followed by manyl days of utter exhaustion, having morning wood again, having less anxiety: these are all good things. But it takes lots of periodic blood testing, frequent tweaking of dosages, addition of the right kinds of supplements, and a carefully thought out exercise regimen, to name just a few. And libido, ejaculate volume issues, as well as anorgasmia and reduced sensitivity, seem to be the toughest symptoms to get much relief from.

The next frontier will be very, very careful attention to diet. Look for a couple of new threads on this topic early next year.

kazman

Excellent post Kazman, I can totally understand where you are coming from.

What you have said at the end there about diet and starting threads about it, do you (or anyone else) think it would be a good idea to have a subsection on the website with very critical information, possibly outlining ideal diets/ medicines to combat PFS?

I personally think it would be a good idea

Dr. J is a great guy. He’s optimistic and very positive. By the time most of us get to him we’ve been to many doctors who have told us we have psychological issues and Finasteride is safe as candy. We want to grab onto anything positive here and run with it as far as we can. That’s normal, don’t feel foolish. I think we all know we are screwed up, and bad. I’m sure Dr. J knows that too. But, he’s trying.

I will look forward to the post on diet as well. I agree this is an area that we really havn’t explored much yet.

I apologize for not posting as of late, but aside from my own propecia related health issues, my mother has been battling stage 4 sarcomic cancer and is very ill. Please pray for her. Thank you.

I will follow up on this thread when i catch a breather. My life has been put through the ringer the last couple of years or so. I’m really glad i could be of some help here on the forum. Happy Holidays everyone. Remember, never dwell on the darkness in your life, but choose the light and the gifts you already have in front of you. Even with your ailments, you still have far more than you think you do. Choose the light. Peace be with you all.

I just had a chat with Anne. They do phone consultations to people from all around the world regularly. It isn’t cheap, but there is no need to be in Dr. Jacobs’ office in person. You don’t need to fly to New York.

Could some of Jacobs’ patients please give their opinion on doing a phone consult for the initial visit.
I would definitely prefer to visit his office, but NYC is a long and expensive drive for me + a day not working.
Money is a little tight right now.

My basic question is: Will I get close to the same quality out of a phone consult as I would an office visit, or should i just suck it up and make the drive?

bottom line- in person is best but if you cant get there a phone consult is better than nothing. During my 1st visit we basically just talked and he wrote me lab orders. More people who get to docs the better for awareness and data purposes IMO. You’ll like him, good guy.

I recently had an initial consultation with him. Not surprisingly, it is mostly fact finding on his part. He wants to hear your story in detail. He also gave me the specific bloodtests that he wanted me to get done. I can’t think of any reason why I would make the drive versus a phone consultation if it were a long distance. I would agree with most of the others that he does seem like a good guy.

Can anyone tell me if Dr. Jacobs uses some of the more progressive treatment options that Crisler & Shippen use? For example, HCG, Serms (clomid/tamoxifen), transdermals (dhea/pregnenolone), etc. I have only seen references to trt so far.

Thanks in advance.

he is open minded to really anything as far as i know

Im also a patient of Jacobs. Yes, he is pretty open minded. Most importantly, he seems to be doing the most research wise. As pointed out earlier in the thread, we have a condition for which there is no cure at the moment, so keep your expectations within reason. Its going to be a long haul of labs, treatment, labs, treatment etc.

I think its been the experience for most of us that he has gone straight to TRT. As he has blogged in the past, he seems to want to peak our T levels and see how we respond before he moves on to other treatments.

These doctors supposedly never get it wrong, even when their patient doesn’t see improvements.

If their guessing treatments fail they can always state that it’s psychological, it’s the patients fault.

That’s how it has been since the dawn of humanity, and that’s how it’ll always be.

Jrousa2, It’s funny you said that in this thread. Dr. Jacobs was one of the few doctors I have seen to admit they couldn’t explain what was wrong with me rather than resorting to the “it’s all in your head” bullshit that is so common. He almost seemed apologetic about it. Very respectable guy IMO.

Did you have a bad experience with him?

let me just give my two cents…yes i did have a bad experience with him…i called him during a whole week…international calls…and they kept hanging up on me, one day i was finally able to talk to the secretary and i mentioned finasteride and everything, she said, sorry we cannot help you, we dont take calls, and dr jacobs will only speak to you if you come to new york and make an appoint. HAHA man thats what i call professional, seriously, thats actually beyond being professional, thats being an ass, i was almost crying when talking to her, she couldve at least had a little bit of respect and not be a rude ass…he cant help you…i know he believes us…however hes just like anyother doctor…hes looking at side effects and just the brain or just the spine…the body does not work like that…its a whole body its something that is desgined to work in a orchestrated path …you cannot heal selectively…once you heal the body …eveything else heals!

Hi, sorry, I’ve touch-based with him, sent him an email, and he is being very attentive and is being really understanding. He knows I don’t have medical insurance, he took the time to ask me if I have the means to pay for the blood tests, which actually are way cheaper than a consultation with him (which goes for almost $600 for 1.5 hour.)
I don’t know if it’s worth to take this risk of paying this much money and having paltry results in the end.
I already did lots of blood tests in Canada, from which no breakthrough came out of. Except that my idiotic clueless rude doctor didn’t want to order me estrogen tests, which are free in Canada, if requested by your family doctor.
I think I will take a chance with Jacobs, if he doesn’t overcharge, because $600 for a consultation is a lot, it’s at par with plastic surgery for the rich and famous. It’s more than a hotshot lawyer would charge.

For that amount, in Canada, I would be entitled to follow-ups for a year.

Btw, when I posted the above comments I was expressing my frustration with many doctors that seem to know way less about this issue than myself, and many other issues for that matter.

What puzzles me is, if a blood test ever points out where the problem lies, what treatment could be followed to address the problem? And worse than that, when it comes to EA, it seems that blood tests rarely indicate any anomaly.