A glimmer of hope!?

General Discussion
#1

I have been seeing a uroligist over the last 6 months, initially I had low testosterone and low free testosterone and I was told I needed to wait 6 months to see if my body began to recover naturally. Needless to say this pissed me off since I have been doing just that for over a year.

6 months down the line I requested that my prolactin be tested as well, having had another appointment I was informed that my test had increased (I wasn’t told about my free test however I will demand that my dht, free test and e2 is tested for - since my uroligist and GP seem to be against testing for them) but also that my prolactin was off the scale.

Having looked im to prolactin and prolactinoma I realised that a tumour on my pituatry may be the culprit to all my PFS side effects. It can cause vision problems as the tumour grows (which I occasionally have). Prolactin can lower dopamine causing loss of orgasm, it can be a physiological cause of PE, loss of libido, erectile dysfunction and can trigger hypogonadism. I’m sure I’m re-covering old groumd here and that this is common knowledge on this forum .
So here comes my theory;

I had an email from Dr Jacobs a while ago which I posted on here. He summorised that there are two groups of men - those with pure PFS (the guys who have been hit hardest) and guys with PFS related illness i.e a pituatry tumour producing excess prolactin. Therefore treating the related illness will go some way to curing the PFS.

I believe that those suffering lesser effects are those with a PFS related illness, I’m confident that once I start treatment for my prolactinoma I’ll begin to lead a normal life again. I believe others can too. Unfortunatly this doesn’t offer much hope for those with pure PFS; I wish I were smarter and could hypothesise a possible cause and treatment for the guys who suffer that.

I’d urge any one who hasn’t to get their prolactin levels tested, they may be closer than they think to a cure.

#2

Had brain MRI done over 18 months ago. No pituitary tumor.

#3

my prolactin was at 80 ng/ml. I treated it, but not much has changed, with the peace of Jacobs. I could hope it is a tumor for you (I did hope it for myself) but I doubt it. And generally tumors come at 100 ng/ml of prolactin and more, not at 15-20 ng/ml.

#4

MRI done, no tumor found.

#5

KSM-UK, I hope you feel better but Jacobs if full of shit. He just posted a blog to keep “relevant” and continue to get patients. There are not these categorized groups of sufferers he claims. So basically he says well “now I see finasteride users who have tumors and finasteride users that dont have small tumors”. What a bunch of nonsense. He thought I had Cushings based on my test results and did a series of tests and said most PFS guys didnt have Cortisol issues. Almost every PFS guy has some cortisol issue so he knows nothing and doesnt seem to concern to investigate the full effects of the drug any further than his shitty blog. When I went to and Endo and she saw my cortisol levels she said they are high, but said she would know before the testing that I “unequivocally” did NOT have Cushings.

#6

My cortisol was 75 range I think was 25-52 usually with cushings the range is 120+.

#7

Yeah BP, that was the point I dropped him. When he finally ruled it out, he said that he thinks stress raised it to that level, which he termed “pseduo cushings” While I absolutely know we have some form of “pseudo cushings” it is certainly not stress related. I told him that stress doesnt shrink your hands, wrists, forearms, and lower legs. Instead of using information like your high cortisol and mine, and maybe investigated a potential pathology, he felt more comfortable blaming it on high stress.

#8

The high cortisol is mostly likely caused by the human body trying to cope with the screwed up androgen metabolism.

#9

WTF! I spent good money to see this guy because he was so damn “interested in epigenetic mechanisms behind PFS and PSSD”. It’s nice to know he has 3 years clinical experience evaluating and backstabbing 300+ cases of PFS under his belt these days.

Since he already ruled out “pseudo-cushings” in my case, might be time to see him again and get that “pseudo-adrenal hyperplasia” that wiped out my sex drive taken care of.

Though it’s probably guilt-induced stress from recommending him to people that’s causing my problems at this point. You know, just like the way dancers and marathon-running women lose their menstrual cycles.

Dick!

#10

Well my prolactin was 700ng/ml or there abouts and I can testify to feeling better after smoking cannabis.
Dr Jacobs isn’t my doctor and I’ve paid him nothing, but I can’t help but feel that he may have a point with regards to PFS related illness.

Every one on here seems to have PFS in common, but there isn’t enough commonality in symptoms to say that any 1 person has any one symptom. Some have gyno, some have testicle pain, some have delayed ejaculation and others have PE.

I don’t know, I can’t say for sure and I can only speak for myself. All my sides are sexual and prolactin is known to cause sexual dysfunction in men, my prolactin is sky high it seems to me like the dots are connecting.

Does any one know anything about what the foundation is doing? Behind the scenes, that perhaps isn’t on the website or this forum?!

#11

ehm, I hope you had a MR for it. 700 ng/ml is a strong evidence of pituitary tumor.

#12

my prolactin was over the limit last time i checked it, but some other times it was in range and i was not good anyhow. Any clues about how to reduce prolactin?

#13

Slightly above limit prolactin won’t change quite nothing most probably. I didn’t feel much difference from going 80 ng/ml to approx 0 ng/ml with dostinex. It did help a bit raising testosterone, but only 2 units, not more.
Normal exercise might bring it down, running I mean.

#14

My Endo through I might have a pituitary tumor at one point due to high prolactin, but the level dropped in a repeat blood test so I never did an MRI. The Endo said that any kind of “environmental stress” can raise prolactin, whatever that means.

#15

I think dopamine agonists are the way to go if you have high prolactin, my PE dissapears when I smoke cannabis and I get something near orgasm. So I’ve no reason to believe that something like dostinex won’t help some what.

Maybe it’s a 3 prong attack needed? HCG to raise test, proviron to create more bio available test and dostinex to aid your brain create dopamine and negate prolactin improve sexual function and return orgasm.

If the dopamine agonist alone doesn’t help the options above are a route I’ll definitely push for.

#16

How are you doing with your symptoms?

Are you any better now?

#17

I too have slightly raised prolactin, but i’m not sure that it necessarily means that i have a tumor. Anyway, when i treated it i felt really nice improvements, especially with tribulus terrestris included to that regime. Actually i felt for a couple of days almost fully recovered. But, the problem is that when i feel better from it, it lasts while i’m taking pills, which leads to the conclusion that body still lacks in something important, whether it is 5ar or something else.
Also, i believe that, like in any other illness, there are more and less severe cases, in other words that there are victims that haven’t developed insensitivity to androgens and are able to get better by treating hormonal issues, although pfs is related to many other things in organism.