ncbi.nlm.nih.gov/pubmed/17785327
High prolactin and low vitamin D (as many of us have) are common in sufferers of autoimmune disease.
Many of us feel better the day after drinking alcohol (increases dopamine which inhibits prolactin) and following exposure to sunlight (increases vitamin D).
FYI, someone has also posted a study previously about prolactin inhibiting 5ar activity: ncbi.nlm.nih.gov/pubmed/2943108
Hi,
I am new to the site, so I hope my interpretation of some of this is correct. I get from my reading that high levels of Prolactin inhibits 5ar activity. In the second research study you referred to it says:
“the hyperprolactinemia-induced block of this enzyme appears to be rapidly reversible because the enzyme is reactivated within 48-72 hrs after normalization of prolactin levels. (Normal values of prolactin were on the average achieved on the 4th day after sulpiride discontinuation).”
So I am not sure how many people can speak to this, but I note you mentioned many people on the forum have a high Prolactin level. Myself, I have a low Prolactin level (5.5ng/mL on a scale of 2 to 18). I have seen studies that say Prolactin levels as high as 30 cause ED issues. Another study also said low Prolactin levels around 5 also cause ED as this is less common. So it seems there is a sweet spot in between which would be the normal ranges for Prolactin as going too high or too low both create ED issues.
Another difference I may have vs many here is I have a high level of Testosterone (967ng/dL on a scale of 250-1100, but for my age of 46 I should be 575ish and at 967 I am over the 100 percentile) and I am high on Estradiol (31pg/mL and I should be about 24.7 which makes sense if Finasteride raises both Total T and Estradiol and I read high Estradiol can cause ED) but the weird part is I am in the bottom 5 percentile for Free T at 72.5pg/mL which would mean I don’t have much to convert to DHT and thus could cause libido and ED issues. This might mean a super high level of SHBG, but I have not been tested for that yet.
So that is why I am so interested in the Prolactin levels as I am opposite most people here. I am hoping correcting that might be my solution. Here are two other studies about Prolactin and HCG I just found. This first one seems to support the study you quoted. Do you agree?
ncbi.nlm.nih.gov/pubmed/6773818
This second one which is from 1983 was using a lower level sulpiride treatment and maybe that is why the results were somewhat similar, but took much longer. But it seems when they suppressed the Prolactin levels, it reduced DHT levels which I think may be my issue. So it seems that if you have low Prolactin levels like me, the injection of HCG may increase my DHT levels(but it seems to have no effect if your Prolactin levels are normal or high) too. What are your thoughts?
ncbi.nlm.nih.gov/pubmed/6643949
I hope my thoughts are not way off base.
Bob
Have you tried just taking an aromatase inhibitor? In principle that should lower your E, thereby freeing T, and increasing DHT all at once. Its common for people with high T to have low libido because of elevated E levels.
vkg1
I have not at this point as I am still trying to fully research and understand this before I start adding new drugs to my body that might screw me up more. Have you done this and been successful?
Dr. Jacobs had suggested to me Clomid and an AI. But I am wary as I have read many people do that and are ok for a efw months and then are worse off after so many months. I rather just stay where I am at versus potentially make my symptoms worse. Does that sort of make sense why I am still in the research mode?
I am pretty sure both serms are genotoxic.
I am rarely posting on this forum now but when see an advice like this one then feel it is my moral duty to caution people against such advice. Armotase inhibitors are themselves not safe. I have made a thread already here you can search. Also don’t forget recent guy who took his life. He said he got worse after AI use. Please do some google search with Arimidex + joint pain+fatigue+ loss of libido etc and you will find many people with loss of libido, depression, fatigue etc. These sides are very close to pfs already.
Thanks spstriken…
That is why I am soliciting feedback. Actually, I have another thread in which I asked if everyone had it to do over again…(absent not taking finasteride), would they still take the various TRT, Clomid, AI, thyroid stuff, etc or would they have just left it alone and hoped the body healed it’s self?
I ask that as many people have seemed to post that they are fine on these what I call “hardcore hormone type therapies” and then after a while they are actually worse off than when they started. So given the choice, would they do it all the same again or not?
I am guessing from what I have read, a good 50% are worse off after trying to fix the PFS stuff. Where it seems that time has helped some and they are not really sure what the magic was except maybe the body actually adjusting. I think my biggest worry is the abnormal brain activity that was found in the Harvard study…I am not sure how that fixes itself.
So what is everyone’s thoughts on this?
If I had to do it again, first thing would be to do extensive testing. I would spend 3k+ on testing
Organic acid urine test
23andme
Hair mineral test
Extensive blood work
Urine hormonal testing
Saliva hormonal testing
Urine heavy metal testing.
Stool testing
I would get on a super healthy diet asap. I would look for existing weaknessses and try and work on them. I would not take any more drugs. Drugs got us here, I do not think they can get us out.
In my case I have high iron I really should have fixed this many years ago.
Vincent,
Funny you say the 23andme testing and I read about it somewhere. Is there somewhere on the site where I can post my results for 23andme and people can help analyze it?
We are on the same page as far as extensive testing. I have had two rounds of testing and I am going to wait 2 6 more weeks for my third round (2 months apart each) to see if I see any trends. I will post my test results below. I am doing all you have and I might add in these suggestions you had. Why did you add these and what value did you get from them?
Organic acid urine test
Hair mineral test
Urine heavy metal testing
Stool testing
Here is my synopsis and test results.
Background – I am currently a 46 year old, otherwise lean, healthy male who is reasonably fit. 5’6” and 140 pounds as I try to stay in shape. No drug use, no smoking, no alcohol consumption. I took 1.25 mg Finasteride roughly for 6 to 12 months in 2009 with no side effects. Started again Sept 30, 2015. Oct. 10, 2015 was in ER for epididymis with a raging hard-on for about 2 hours. I had two additional bouts of epididymis for the next two weeks which I got through with painkillers just staying at home as I was told by the ER I would adjust to the medication and not worry about it. I started to notice a loss in libido, morning erections and such right after the epididymis bouts(mid October 2015). But I chalked it up to anxiety from separation from my wife (we separated in July 2015) and that sex was not number one on my mind as just repairing our relationship was. However, in hindsight, I doubt a separation that happened 4 months earlier would cause this, but during the time this started I was distracted and sex was not a big thing right then. I even recall talking to my buddy on the phone and not putting two and two together saying…”man, I am surprised, I have not masturbated it in over two weeks.” Prior to October 2015, my libido was super high. I have for the past 20 years masturbated anywhere from 1 to 3 times a day in addition to sex with my wife roughly 4 times a week. I have always had morning wood and spontaneous erections that are at times embarrassing.
From sporadic intimate encounters with my wife from November 2015 to March of 2016 I displayed an erection not to full capacity and I had to really think about it to maintain the erection. Ejaculation was not pleasurable as before. Again, I chalked it up to what we were going through as we were still separated. I started to really worry around April 2016 when we were fully back together. My symptoms did not change from April 2016 to June 2016. I then researched and found out that Finasteride causes these sort of side effects and discontinued June 8th, 2016 without tapering off from the 1.25 mg dose.
My urologist said things would get better within 30 days of discontinuing Finasteride. There was no improvement. I was given a 30 day trial of 5 mg Cialis. That seemed to help maintain the erection somewhat better where I did not have to concentrate on keeping it as much, but it did not help with morning wood or spontaneous erections. Also, I was not able to keep the super hard-on that I am accustomed to where I can control and kind of pulsate the blood in my penis’ head to make the head get bigger and hold it like that. It is just something I knew I could always do and can’t really do now. My urologist ordered basic hormone labs and they were run on 7/28/2015 at 1:44 in the afternoon. So you would think some of the hormone levels like Testosterone would be lower than if this was done in the morning. But you will see I am above the 100 percentile for my age.
My first tests from July 27, 2016
Testosterone – 967 ng/dL range 250-1100
Free Testosterone – 72.5 pg/mL range 35-155
FSH – 5.9 mIU/mL range 1.6-8.0
LH – 5.7 mIU/mL range 1.5-93
Estradiol – 31 pg/mL range <OR=39
Prolactin – 5.5 ng/mL range 2-18
The only major problem with the results below, I did not realize I was 3 days into a Shingles outbreak when they drew the blood and urine for these tests…the shingles I am told was probably from all the stress worrying about PFS as stress and high cortisol triggers it I am told.
My second test results from October 5, 2016
Testosterone – 682 ng/dL range 250-1100 – this went down but for my age still seems fine
Free Testosterone – 42.2 pg/mL range 46-224 - this seems to went down just below the bottom range
Testosterone Bioavailable – 92.4 ng/dL range 110-575 this is below the bottom range
SHBG – 80 nmol/L range 10 to 50 this is super high
Albumin,Serum – 4.8g/dL range 3.6-5.1 this seems ok
FSH – 3.9 mIU/mL range 1.6-8.0 This went down 2 full points, no idea why.
LH – 2.2mIU/mL range 1.5-93 This went down 3.5 points, no idea why. Does it normally fluctuate this much?
Estradiol(Ultrasensative) – 23 pg/mL range <OR=29 this seems ok?
Estrogen, Total Serum – 183.6pg/mL range 60-190 This seems to be high at the top end.
Estrone(E1) – 39 pg/mL range <OR=68 This seems to be ok.
Prolactin – 5.6 ng/mL range 2-18 This stayed about the same on the low side which is good.
DHT – 60ng/dL range 16-79 This seems to be really good, especially given my low Free & Bio Testosterone or am I reading it wrong? It does not seem to make sense. Although I did take 20 grams of Creatine for 5 days loading. But when I found out I was getting my tests, I stopped it for 6 days to take my test. I read it should be out of my body probably in a few days as I read Creatine can help your DHT levels.
Progesterone, LC/MS/MS - <.1 ng/mL range <OR=.2 So this seems to be good as it is low which allows me to convert Testosterone to DHT, correct?
Progesterone (another one with different range) - <.5 ng/mL range <1.4
Pregnenolone - <5ng/dL range 13 – 208 Wow, I am super low. I thought this was the top level hormone that converted to progesterone, DHEA, testosterone, estrogens, etc. So how if I am so low, can I have decent Testosterone levels?
DHEA S – 172 mcg/dL range 106-464 I am thinking this is a little low, probably due to my low Pregnenolone?
3A Androstanediol Glucuronide – 764 ng/dL range 251 – 1500 This seems in the middle? Good, bad?
TSH – 1.4 miU/L range .4 - 4.5 This seems to be pretty close to perfect.
T4 Free – 1.1 nm/dL range .8 – 1.8 This seems to be low.
T3 Free – 2.5 pg/mL range 2.3 – 4.2 This seems to be low.
T3 Reverse – 36ng/dL range 8 – 25 This seems to be super high. I don’t know what that means.
Could these thyroid levels be off due to the Shingles outbreak I was having when they drew the blood?
PSA Total - .5 ng/mL range <OR=4 This seems to be good.
PSA Free - .1 ng/mL There was no range for this test.
PSA % Free – 20 >25% calc This was flagged as low. I have no idea what it means. Does anyone else?
IGF-1 – 141 pg/mL range 52-328 This seems normal I think.
IGF Binding Protein 3 – 3.8 mg/L range 3.3 -6.7 Not sure what this reading means on the low side.
Cortison Serum – 1.6 mcg/dL range 1.2 – 3.5 This seems ok, weird my 24 hour level is so sky high. Ideas?
Corticosterone – 251 ng/dL range 59 – 1293 This is on the low side, not sure if that is good or bad. Thoughts?
Deoxycorticodterone - <16 ng/dl range <OR=15 I have no idea what this is. Any explanations?
Adrenal Glands
Androstenedione – 63 ng/dL range 40 – 190 This seems pretty low. No idea why.
Deoxycorticodterone - <16 ng/dl range <OR=15 I have no idea what this is. Adreanal glands? Possibly from the Shingles outbreak? Any thoughts on the results?
17 Hydroxypregenolone – 18 ng/mL range <OR=905 Is low good?
17 Hydroxyprogresterone – 45 ng/dL range 33-295 Is low good?
Aldosterone – 10 ng/dL range 3 – 16 This seems average I guess.
Creatinine 24 HR – 2.3 range .63 – 2.59 Could this be skewed due to Creatine I spoke about before?
17 Ketosteroids 24 HR – 7 mg/24hr range 8 – 20 This is low meaning adrenal fatigue or tumor?
ACTH Plasma – 11 pg/mL range 6-50 This seems to be on the low side which is adrenal issues/tumor?
Hepatic Function Panel
AST – 92 U/L range 10 – 40 High, probably due to shingles outbreak
ALT – 75 U/L range 9 – 46 High, probably due to shingles outbreak
Bilirubin, Total – 1.3 range .2 - 1.2
Magnesium – 2.2 mg/dL range 1.5 – 2.5 This seems good.
Zinc – 74 mcg/dL range 60 – 130 A little low, no biggie.
Vitamin D1 – 78 pg/mL 18 – 72 A little high
My one concern is my T, Free T, FSH, LH all went down from my first test 2 months after I stopped finasteride to the test that was 4 months after I stopped. So I don’t know if I am getting worse or if it is just a normal fluctuation of the day. As in reality, all those levels except for the Free T are probably better than most people here. I guess the real thing is my symptoms have not change with those hormone value changes so it is sort of a moot point. I am just hoping it is not starting to go downhill. But I will keep positive and hope not 
Here is even a chart I created of the hormone levels and how they synthesis.
From those tests I found out my body was under a big stress as pyroglutamate was high and markers of DNA breakdown were high. This pointent me to possible heavy metals and I have high iron. So it could be that.
I also found high levels of thallium in urine. Possible from contamination of foods which I am eating.
I need to work on fixing my glutathione levels and hope reducing iron can fix this.
Looking at random hormones does not help that much because if there is a problem we can not do much unless we of course had some kind of tumor, which we do not seem to.
Well said spstriken, Arimidex and similar drugs inhibits the p450 cytochrome which is involved in the whole neurosteroid genesis chain. Most likely it will make things worse. The are a lot of endos who do not have any clue (e.g. Dr Jacobs) who always prescribe a big dose of AIs with Clomid or TRT without considering the consequences. The main discovery of the Italian studies is that PFS sufferers have lower levels of neurosteroids, hence anything that will decrease their level will likely exacerbate the symptoms. When I took Arimidex under Jacobs’ advice I literally didn’t have a nocturnal/morning/spontaneous/non-stimulated erection for two months, even if at the same time I was taking a big dose of Clomid.
Thanks for the feedback Elijah. I met with Dr. Jacobs a few weeks back and that was his suggestion. Clomid and maybe Arimidex. He is supposed to review my results this week. So we will see what he says. Regardless, I want multiple opinions before I do anything and I may even just give my body another 6 months or so and see how things progress as many of my labs seem ok. The few things that pop out to me is a somewhat elevated Estrodiol levels and off the charts SHBG, so if I can more easily just tweak them I may be ok I am hoping. As I do not seem to have it as bad as some others, but my main concern is once I started Finasteride, I could not get an erection no matter how how the chick was or what the stimulation was unless I manually stimulated myself. I can sort of live with that if I have to, I don’t want to make it where it doesn’t work under any circumstances.
Any other feedback you have is appreciated.
Also Dr. Jacobs was telling me about a new protocol he was going to try with Naltrexone and Gnrh. I don’t know with my symptoms that I really want to be a guinea pig as I have not lost all hope of a natural or similar recovery that may increase my quality of life before getting all crazy with more drugs.
elijah you pointed out P450 enzymes. Few months back I was building a list of food and Meds which are P450 inhibitors and almost 100% of them were causing ED and impotence. This is not coincidence. Maybe our P450 production has permanently impaired.
for example. My old PC brock down and all the data was stuck in the old Hard drive.
usmle-forums.com/usmle-step- … onics.html
P450 Inhibitors
Don’t join this group it will make your spirit go down…
SICKFACES.COM Group
Sodium valproate
Isoniazid
Cimetidine
Ketoconazole
Fluconazole
Alcohol…binge drinking
Chloramphenicol
Erythromycin
Sulfonamides
Ciprofloxacin
Omeprazole
Metronidazole
Grapefruit juice
P450 Inducers
CRAP GPS induce me to madness!!
Carbemazepines
Rifampicin
Alcohol (chronic)
Phenytoin
Griseofulvin
Phenobarbitone
Sulphonylureas
I recommend reading a book on TRT (kindle, iBooks, wtvr). You’ll find it’s common for men with high T to also have high E causing low libido. In such cases it’s common for doctors to prescribe a very low dose of AI, get blood test to make sure E hasn’t gone below range, and see how you feel. The danger with AI is going too low. But with conservative approach and doctor there’s no reason to have that happen. This seems like first thing to look at given your previous blood test results.
bb121,
I consulted Dr. Goldstein and he treats his PFS patients with Clomid and occassionaly Anastrazole (aromatase inhibitor). My SHBG is way too high just as yours and he told me that this is bad as SHBG is supposed to be low in normal guys. My total testerone is always normal or even above the range. However, the free and the bioavailable testosterone is relevant. And his is rather low in my. I talked to several of his patients (5 or 6) via e-mail and the majority of them told me that clomid did help them and that they are grateful that they did the therapy. However, I am also afraid of the side effects and still reluctant do do it. I took Tamoxifen and I didn’t do well on it. Nevertheless, I am a long term sufferr of 12 years and waiting was not a good idea. So I am determined to do something in the near future.
keepup,
Thanks for the reply.
I have not met Dr. Goldstein yet, as I had to delay my appointment with him. But I have met with Dr. Jacobs and Dr. Irwin.
Dr. Irwin basically offered nothing…no hope, no suggestions.
Dr. Jacobs was thinking of doing Clomid, but when my results came back after my second round of testing all over the place, he decided to wait until we have a third round of test results as the Shingles outbreak I had may have thrown everything out of wack.
So hopefully I will know more this time next month on my updated test results and then from there I may schedule my appointment with Dr. Goldstein. But I am having some other tests done in the meantime such as pelvic floor muscles, nerve test and such to rule those out hoping to find some root cause that is not PFS related for my issues.
bb121
Hi,
I would be very interested in reading this paper on abnormal brain activity, (cause be fin or AI?) if you could give me some proper keywords or find the link that would be much appreciated