An email I received from Dr Alan Jacobs

Therapeutic Efforts Doctors & Therapists
#1

Below is an email I received from Dr Jacobs after contacting him and asking about his success rate with treating side effects of PFS. While I don’t feel he has given a definitive answer; he has, IMO, shown good insight in to treatment and understanding of how PFS effects different people and body parts.
Let me know what you guys think, and if it’s wortg 600 US dollars just for a phone consult.

Hi: I would explain it this way: 20% of guys have a different reason from the finasteride, like a pituitary tumor, and we treat that. 30 % have genetic issues, like family history of anxiety disorders, that interact with the PFS and complicate things. But these guys do well also when all hormonal and emotional issues are optimized. As for the rest with pure PFS, my plan is to get the bioavailable to estradiol ratios maximized and essentially all of them keep asking for refills for the testosterone and/or arimidex and/ or clomid, etc. I have no reason to believe they are not being helped greatly by these therapies. Only a few guys have seemed to be testosterone-resistant, and one of these had very high FSH levels for a different reason, which I thought might be the culprit, but he declined to try Lupron to lower his FSH.

#2

Very interesting.

Glad to hear his patients benefit from his therapies.

On here would have you believe that 90% of PFS patients don’t. But the doctors clearly report differently. It’s obvious that only the worse type of patients tend to post here. Which explains our skewed perceptions.

#3

Dr. Jacob’s email seems to go against the data collected on this site. Below is a quote from Awor on this subject.

propeciahelp.com/forum/viewtopic.php?f=4&t=3250

Subject: *** Post your experience with androgen supplementation HERE (DHT / TRT) ***

#4

so the therapies r still the same?

mm not much enthusiasm in clomid &c

#5

I think that’s complete shit. I have been here for years now and the amount of bona fide recoveries can barely fill two hands. Dare I suggest the docs report differently because the truth mighth scare away business? We have moonman on here for example, who took TRT for Crisler for a long time and reported no real change, so you can’t assume that guys on TRT or clomid/arimidex etc are doing well. The only guy who seemed to benefit from TRT was this Canadian whose name escapes me (brain fog), and he was practically ignored. No wonder a guy rejected Jacob’s suggestion to try Lupron (which blasts your testosterone to nothing) that sounds completely idiotic and probably quite dangerous. There are plenty old men who took that for prostate cancer and didn’t recover their testosterone afterwards.

Most guys learn to manage their symptoms and ‘move on with their lives’, which I personally don’t agree with. Everyone with PFS should at least be checking in relatively often as there is strength in numbers. I think the core that remain tend to be newer members or the badly affected beyond sexual sides.

#6

600 us for a phone consult? :astonished:

wtf, i feel that for him we are gooses that lay golden eggs :smiling_imp:

#7

In my opinion, if Jacobs is suggesting Lupron as a treatment option, there is something very, very wrong there.

#8

What interested me was seeing that TRT wasn’t the only treatment available. He recognizes that PFS can manifest it self in other forms and treats that.

Now I’m not saying that Dr Jacobs is doing this for the good of men like us, in fact he probably does see us as a gold mine. But what I am saying is we owe it to ourselves to try.

For me, these doctors will be the last resort after trying everything.

#9

We are not responding to androgens. Its pretty much that simple. TRT really isnt going to help. Lowering your E2, that might help. Working on you adrenals and thyroid, that might help. Working on your gut health, that might help. But anything that involves androgens has proven time and time again to not help us…

#10

I don’t necessarily agree. I agree that for a high proportion of us don’t respond to TRT, while others may do. Our endocrine systems are as individual as a fingerprint. Some guys have recovered through GHB, while Xryem hasn’t even dented the surface for others.

There could be a number of factors that need treating, hormones + prostate + thyroid for example. It could be the case that TRT + dopamine agonists combined may help. Every one has a different degree of PFS and treatments need to be tailored. I think this is the point of the email.

I don’t disagree that treatments haven’t worked, or that we are essentially guinea pigs and meal tickets for these doctors. But I think it’s wrong for potential treatments to be dissmissed because they haven’t worked for some of us. We’re currently speculating, and saying it definitely won’t work is like saying only 2% of men are effected by side effects.

At this stage you need to give things a try, if it doesn’t work well then it’s back to the drawing board.

#11

Hey man, it’s your money. Use it how you want. If you spend the $600 (+ $$ for the medications and labs) and are 100% recovered then I will personally reimburse you. But I think all that money will be better spent by putting it in the research fund that will hopefully be running in days…

#12

For me the consult ended up being worth it because of the fact that my job tried/is trying to terminate me baised on former severe depression from finasteride. They based their reasoning for this by saying that they didn’t believe finasteride caused my depression thus there was a high probability that my depression was something I had my entire life and could reoccur. When this happened, since I consulted with Jacobs previously he was able to confirm with them that finasteride can in fact cause severe depression and many other side effects due entirely to the drugs effects and not because I have some genetic predisposition to depression.

Basically now they are bidding for time and trying to find another way to shit-can me, but Jacobs helped me squash that bullshit attack.

Medically… I do disagree with that statement about the tumors. I haven’t heard of anyone on here at least coming forward about pituitary tumors being found. Jacobs thought I had one, MRI/MRI with contrast showed nothing. He thought it might be a micro-tumor, turns out the only way to test for that was to stick a needle up your nose and draw blood directly from the vein coming from the pituitary gland… I was ready to do it, went to another endo who said she wouldn’t do it without running my cortisol again (which I had tested 4 times previously) at this point I said to hell with it. I didn’t want the invasive test in the first place because I honesty do not think all of this is because I have a pituitary tumor. Besides that I don’t really have any of the other symptoms of the tumor, (cushings disease). I know other guys have had the MRI’s of the pituitary here and found nothing as well.

#13

I totally agree with you, money would be better invested in to studies for a cure. In fact this is something I would do, even if I managed to cure myself with treatments others have tried.

But I feel you’re missing my point…my point is that what may not work for one, may work for another and people shouldn’t decide that TRT or any other therapy won’t work because it didn’t work for John Doe.

For me going to a PFS ‘specialist’ will be the last port of call. After all $600 is a very pricey phone call. But what other options do we have?? We put a price on our vanity and it came at a high cost. How much would you pay to be your normal self again??

We won’t be cured by sitting on the forum telling each other things won’t work. It’s probably the case that TRT won’t, but there’s and outside chance it will.

We’re an unlikely fraternity, we’re all here for support and guidance.

#14

We are here for support and guidance which is why most are suggesting that the $600 for a phone call to get put on TRT may be put to better use, especially considering the absence of positive reports of consistent beneficial Test Replacement Therapy. Read this full thread again to understand why:

propeciahelp.com/forum/viewtopic.php?f=4&t=3250

This thread is a list of experiences with androgen supplementation. Supplementing with androgens in cases have caused worsening of symptoms so attempting TRT is not 100% risk-free.

#15

I get what you are saying. I may be splitting hairs, but I think everybody can improve off of different treatments. However, it will most likely take the same treatment for everybody to be cured.

That is of coarse speaking hypothetically that all this epigentics research is on track to real results…

#16

I’ve seen Jacobs and I like the man personally and his medical credentials are impeccable. He has been vocal about PFS and I think it will be nearly impossible (never say never) for Merck to paint Jacobs as a quack. However, I can find absolutely no evidence that most of us respond to TRT whatsover. Matter of fact that statement is in direct contraction to everything we’ve learned so far from research and anechdotal reports. You could more easily argue, with what we know at this point, that TRT could do more damage than good.

When I went to see Jacobs I was assured he could help and that most all respond to treatment. I got nearly virbatim the same pitch KSM-UK described. The truth seems no one is really having any success with treatment. But I do understand when a patient (customer) calls your office you don’t turn them away and as a doctor you may not want to seem negative or give up hope. I will say Goldstein and Shippen seem a bit more straight forward about their (lack of) success rates. I have a feeling down the road seeing an endocrinologist for PFS will make about as much sense as seeing a witch doctor. Maybe we’ll get some help from the personalized medicine field and individual gnome and epignome mapping. Of course some of us could do that now but who would you have interpret the results and who would know how to treat problems? Unfortunately all that might be too far down the road to be relevent for some of us.

#17

Again the key word there Boston is most. Not all, and yeah I read the studies and there were cases where symptoms got worse. And reports on here tend to suggest TRT doesn’t work. I’m not saying it always does, but it appears to me that those who do recover don’t come back on the forum. Look at Cepo. He had a HTPA protocal and no one heard from him again. One post said they heard he was cured.

I also think that there are many PFS sufferers who aren’t members here or don’t post. They might recover via TRT and we’ll never know. The severety of the sides may also have baring on results. There are so many variables, no one can definitively say ‘don’t try this’.

I also think my original point has been overlooked here also. Which was that there could be a number of treatments that need to be run at the same time to effectively treat our condition. This is due to the multi-layer nature of the sides.

#18

  1. Sadly there are not thousands of untold Propecia recoveries out there. This is historically the biggest myth on this board. Not trying to be negative but we need to understand this to move forward.

  2. Most docs will not attempt “a number of treatments at the same time”. Generally medicine doesn’t work that way.

  3. If TRT was working there wouldn’t be 2000 members here and growing and there wouldn’t be more and more top tier medical research institutions moving forward on the angrogen insensitivity via epigenetics theory.

If you can afford the phone consult I’d encourage you to go ahead. But if Jacobs was having success we’d know it here. It’s just that simple. I don’t want to see someone promise you results when I know 100% that there is no way they can keep that promise. You have to keep your expectations within reason and understand we have a condition for which there is no cure at the moment. Again, not trying to be negative but we’ve all had enough disappointment to last a lifetime.