My Experience

Hi,

I am new to this board and I am sure like everyone else here wishes they knew nothing about this subject and never had to deal with it. But given it seems I have to, I would like to give you my story and I welcome some feedback on if you think I have PFS and if there is maybe milder forms of it or not.

So some background…
I actually first took Propocia/Finasteride back in 2009 for almost a year. I had no side effects while on it or when I went off of it. I highlight this fact as in all my research, I do not know of anyone else who was on it for a while and went off with no side effects and then when I went back on it Sept. 30, 2015 I almost immediately started having side effects. Within two weeks I was in the ER with for epididymis and they did an ultrasound on me. I told the ER I had just started Finasteride and no one there said anything to me about discontinuing it. They just prescribed me I think it was 500mg of Ibuprofen and Sulfamethox and they also gave me some pain killers (I forget what kind). The pain was so intense, I could not walk. Even shifting in my chair was painful and one of my testes swelled up at least twice its size. But I had a raging boner…wow, what I would give to have that back again. The Ibuprofen and anti-inflammatory seemed to work pretty well as in 2 days I was back to normal. This happened I think 2 more times over the next two months. I just dealt with it thinking it was my body adjusting to the Propecia/Finasteride and it would go away.

Now just previous to being prescribed the Finasteride, my wife and I separated. So to be honest, right before I started taking Finasteride, I was masturbating twice a day, every day as I had a very strong libido and I would get aroused simply with bikini pictures and that would at times get me masturbating. Shortly after starting to take Finasteride, that stopped. What I failed to immediately recognize which I can see now through hindsight is that after I started the Finasteride my libido started to come to a crawl. I no longer had my morning erection which was always very strong. I was not thinking about sex anymore. Bikini pictures would not do anything. Videos and pictures of my wife that always got me off, now could not even get me hard never mind make me ejaculate. For me to do any of these things I had to really concentrate. Then when I did, the sensation in my penis was just not there. Climaxing has no feeling like before. My penis is not sensitive like before. My ejaculation is maybe one tenth of what it was before and usually very thick. I was thinking this was all due to the stress of our separation.

My wife and I got back together in April and I noticed how hard it was to get an erection and to try to climax. I really had to plan it unbeknownst to her to get myself super excited before attempting sex with her. The few times we have tried, I could not really stay hard or climax , but I will say I could usually at least keep a semi-hard erection and through will power I could have a weak ejaculation without the pleasurable climax feeling. Anyway, at first I thought it was due to the separation. Then I tried as mentioned before looking at videos or pictures of her that would always do it for me and nothing. Then I tried some porn with smoking hot woman…nothing. Then I realized there was a problem. I stumbled across on the Internet about Finasteride and the side effects and now with hindsight I can see what happened.

I stopped Finasteride the 6th of June of this year. So I was on Finasteride for about 9 months. I have been off of it for just about 3 months with really no improvement. I started to see a local urologist who said the Finasteride should be out of my system and all function return within 30 days. But that has not happened, so his approach was to prescribe 5mg Cialis. However, from my perspective, that is treating the symptom and not the root cause. It does allow me to get an erection, but it is not as hard as it used to be and maybe it is my imagination, but I seem to have lost a little length and girth as it does not seem to swell up like it used to. I used to be able to when I was hard make the head kind of pulsate making more blood go into it. There is no way I can do that now even with Cialis. Anyway, my health insurance will not cover Cialis so it is not really a long term solution for me as it is so expensive.

My testosterone is 967 ng/dL which seems a little high for my age, but if you figure that Finasteride raises your testosterone level 15% like I read on some sites, it is then in line. Next my estradiol level is 31 and from what I have read on other sites it should be 26 to 27 for my age. So again it is about 15% high which Finasteride is also supposed to do. I have read on some sites that Dr. Irwig and Dr. Crisler have said that they have many patients with normal levels or similar to what I am saying that have this problem. Also I have F lH of 5.7 and F Fsh of 5.9 which seem in line of what is normal. I also understand it seems a lot of people on this forum have low testosterone from this. I am curious to the ratio of people who have low T versus normal levels who have this issue. I do think it is probably a gene expression thing since the levels “seem” normal. So I am not too optimistic from what I read here that anything I do will be able to switch that gene back on.

I am a 46 year old man, in very good shape. I started to lift weights again a two months ago and did not notice any difference in my libido(I used to be very bulked up until I tore my shoulder lifting). So now I am going to try switching up my diet and lifting harder now that I am through the re-acclimation period in the gym. I have been trying for about a month the following: a B Complex, 50mg DHEA, 500mg L-Arginine, a general multi-vitamin, and I was doing 50 mg of Zinc but I recently cut that out as I read that once you go over 50mg a Zinc, it can be detrimental. Yesterday I added 6mg of Boron and creatine. The Boron and creatine are from reading that it is supposed to help with increasing your levels of DHT. But I guess if the gene is off that converts testosterone to DHT, nothing will happen, but I figured I would have to try as you never know. If none of this works after maybe 2 months, I was thinking of fasting pretty severely to try to shock and reboot my entire body and maybe that would turn the gene back on/reset my endocrine system. Then beyond that, I will be doing some research on maybe stem cell options if there is even any info on that anywhere.

Thoughts, comments, suggestions? Feel free to point out where you think I may be way off base as I am a newbie to this as much as I don’t want to be here nor does anyone else I am sure.

Bob

PS, I hope Merck’s executives rot in hell…but, I am not bitter…::sarcasm::

A little more information about me…

  1. How did you find this forum?
    Google

  2. What is your current age, height, weight?
    46, 5’ 6", 140 lbs

  3. Do you excercise regularly? If so, what type of excercise?
    Just started lifting every other day.

  4. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)?
    fast food

  5. Why did you take Finasteride (hair loss, BPH, other)?
    hair loss

  6. For how long did you take Finasteride (weeks/months/years)?
    once for about 6 months in 2010 with no side effect, then Oct 2015 to May 2016 with side effects that are still there.

  7. How old were you when you started Finasteride?
    45

  8. How old were you when you quit?
    46

  9. How did you quit (cold turkey or taper off)?
    cold turkey

  10. What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic?
    generic Finasteride

  11. What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
    1.25 mg daily

  12. How long into your use of Finasteride did you notice the onset of side effects?
    10 days

  13. What side effects did you experience while on the drug that have yet to resolve since discontinuation?
    loss of sensation, no libido, no morning wood, no spontaneous erections, decreased ejaculation volume, ED, loss of orgasm pleasure, isn’t that enough? :frowning:

Put an X beside all that apply:

Sexual
[x] Loss of Libido / Sex Drive
[x] Erectile Dysfunction
[ ] Complete Impotence
[x ] Loss of Morning Erections
[x ] Loss of Spontaneous Erections
[x ] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[x ] Reduced Ejaculate
[ ] Inability to Ejaculate / Orgasm
[x ] Reduced Sperm Count / Motility

Mental
[x ] Emotional Blunting / Emotionally Flat
[ ] Difficulty Focusing / Concentrating
[ ] Confusion
[ ] Memory Loss / Forgetfullness
[ ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[x ] Lack of Motivation / Feeling Passive / Complacency
[x ] Extreme Anxiety / Panic Attacks
[x ] Depression / Melancholy

Physical
[x ] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[x ] Testicular Pain (this has gone away)
[ ] Testicular Shrinkage / Loss of Fullness
[ ] Genital numbness / sensitivity decrease
[ ] Weight Gain
[ ] Gynecomastia (male breasts)
[ ] Muscle Wastage
[x ] Muscle Weakness
[ ] Joint Pain
[ ] Dry / Dark Circles under eyes

Misc
[ ] Prostate pain
[ ] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[x ] Vision - Acuity Decrease / Blurriness
[ ] Increased hair loss
[x ] Frequent urination
[ ] Lowered body temperature

[ ] Other (please explain)

  1. What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
    It has only been a few days, but Creatine, Omega-3 3000mg, L-Arginine 500mg, Caffeine 300mg, Daily Vitamin w/ 15mg zinc, B complex w 1mg Choline, 6mg Boron, starting lifting heavy again.

  2. If you have pre or post-Finasteride bloodtests, what hormonal changes have you encountered since discontinuing the drug (pls post your test results in the “Blood Tests” section and link to them in your post)?

  3. Anything not listed in the above questions you’d like to share about your experience with Finasteride?

I did not have a crash. My side effects stayed the same as when I was on Finasteride.

The things I find a bit weird with my blood results from what I have read to date are:
Being 46 years old, my Total T is very high on an age chart, above the 100 percentile. I do not see many other users with high T values or am I just missing those posts? I have seen a few, but it seems like a minority.
967 250-1100ng/dL

But my Free T is low at 5 percentile for my age.
72.5 35-155 pg/mL
I am guessing I may have a high SHBG level and I have to get that tested. But being low on Free T would limit my ability to make DHT and create ED issues from what I understand so far.

FSH and LH levels might be just a little high, but I am not sure.
FSH 5.9 1.6-8 mIU/mL
LH 5.7 1.5-9.3 mIU/mL

Estradiol is high for my age and can create ED issues. It should be about 24.7.
31 < OR=39

Prolactin is low at which I have read can also cause ED issues. This is also where I am weird compared to others as most others seem to have high Prolactin values. But I have read anything down around 5 can cause ED.
5.5 2.0-18 ng/mL

Any insight, thoughts or anyone with a similar profile I would love to hear from.

Bob

Yes it is PFS.

I was on the old forum that existed 2015/2016. Here is my basic story and I am writing this to give hope to others.

Going back further, to 2009, I was 39 and I first took finasteride for about a year and half. I did not take every dose, but I was good on average 6 times a week. I had absolutely no side effects. At that point in my life, I had what I and my best friends would consider an insane sex drive. I had such a high sex drive, I had to spank it 3 times a day on average just for a release. When I discontinued using it, it was fine. I had no side effects.

Fast forward to 2015 when I was 45 and being a bit insecure about hair loss, I took it again. At first I did not notice anything. But then one day about 3 weeks after I was taking it, I was talking to my best friend and he brought up the running joke of my high sex drive. I remember as clear as can be…where I was sitting, the sunlight coming through the windows and all. I told him, I just realized, I have not spanked it in weeks. I was dumbfounded. Then when we got off the phone, I wanted to spank it. I am sure you know where this is going. I could not get an erection and I started to panic. Also as a side note, previous to PFS, I had a hair trigger temper. This probably had to do with even in my 40s I had a testosterone level of 1200+. When everything happened, and I had no sex drive, I also just became super mellow. This was before I figured everything out. Stuff I would blow a gasket over now I just shrugged my shoulders so it was not depresssion that I figured out I had PFS. Well, my SHBG levels were now off the charts at 80. So even though I had somewhat normal testosterone (low for me) after PFS started, the SHBG that I had made the free T very low. Again, just a little more info.

Over the next week, I started to put two and two together and realized this started a few days after I started back on finasteride. If I could get an erection, I could not keep it. Now keep in mind, when I had sex before (and I was this way my entire life), I could come and I could stay hard and come again and again. So I start freaking out. Especially when I started reading about PFS. I seen Bernstein in NY (who prescribed it), Dr Allan Jacobs who was supposed to be the doctor that knew it all in NYC who wanted to supercharge me with T, Dr. Irwig I think it was in the DC area at that time who said he was sorry, he agreed I had PFS, but really could not help me, Dr. Crisler, again, no help, I did also a consult with Dr. Irwin Goldstein in CA which was again, pretty useless, and finally Defy Medical in Tampa with Dr. Saya. This was all over a 2 year period from probably 2015 to 2017. During that time, I was against going nuclear with high doses of T and such as I felt that is a vicious, lifelong cycle I was not ready to commit to.

They did ultrasounds to check out pituitary tumors and my testicles for issues. All was good. It simply was the finasteride. Why it did not effect me the first time I took it 5 years prior and it did as soon as I started the second time…who knows.

I was suicidal like many of you and some of those that I recall reading on the boards that took their life.

Anyway, after about a year into it, I noticed I could at least get an erection and keep it for a bit. Nothing like I used to be. But a bit of progress. I tried all the gut cleaning diets, all the supplements, eating this crap and that crap and nothing really helped (I don’t want to discount them as who knows what caused it for you per se). At about the 2 year mark when I saw Dr Saya, he suggested a milder approach of DHEA and Pregnanolone trouches. As a side note, I had really good health insurance I and I was getting every 3 months for 3 years the blood tests shown at the very bottom of this thread. I had every test color coded if it was in range, high, low, and what I was taking at the time that might have caused any changes. Each set of test ran my insurance company about $5K and there were so many tests they took on average 13 tubes of blood each time. I am giving a lot of detail as I know I have not been on these boards for a long time.

Anyway, with the DHEA and Pregnanolone I started to notice a bit more improvement. I was taking I think 25mg? of each morning and night. Then 50 mg of each in the morning and night. So now we are at year 2 to 3. Things started to improve a little here and there. We eventually tweaked the amount down to 25/25 and then alternating days before discontinuing. That was between year 3 and 4 from when the problems began. The reason was I was slowly improving. I was able to stop by year 4. Now fast forward another 2.5 years. I have continued to slowly improve. I can have “normal person” sex again. I am not like I used to be, but it actually is nice to not have to spank it 3 times a day. I am even back to have to masterbate daily at least once and I and 50/50 if I can keep an erection after ejaculating. I have noticed that I did seem to lose girth and my ejaculations as not the same volume as previously. Much more sticky and less watery.

I am writing all this to give you hope. I do recall on the old boards some people saying it got better after time. It could be 2 years, 4 years, etc. I thank God I am one of them. I don’t have any real words of wisdom on how to beat this (I personally am skeptical of all the gut/food/protocols, but to each their own), but I hope I can provide you some hope in that you can actually overcome your situation with this. I don’t really follow the boards as it is painful emotionally to dwell on some of this of what I went through. I just wish the best for everyone on the boards here.

If you have some specific questions, I am more than happy to answer to the best of my ability over the next few days/week.

Best regards,
Bob

TESTOSTERONE, TOTAL, LC/MS/MS 250-1100 (ng/dL)
TESTOSTERONE, TOTAL, MALE (ADULT) IA 250-827 ng/dL
TESTOSTERONE, FREE 35.0-155.0 (pg/mL)
TESTOSTERONE, FREE 46.0-224.0 (pg/mL)
TESTOSTERONE,BIOAVAILABLE 110.0-575.0 (ng/dL)
SEX HORMONE BINDING GLOBULIN 10-50 (nmol/L)
ALBUMIN,SERUM 3.6-5.1 (g/dL)

PREGNENOLONE, LC/MS/MS 13-208 (ng/dL)
17 HYDROXYPROGESTERONE, LC/MS/MS 33-195 (ng/dL)
ALDOSTERONE, LC/MS/MS *** (ng/dL)
DEOXYCORTICOSTERONE < OR = 15 (ng/dL)
ESTRADIOL, ULTRASENSITIVE LC/MS/MS < OR = 29 (pg/mL)
ESTRADIOL NOT ultra-sensative < OR = 39 (pg/mL)
ESTRADIOL FREE < or = .45
ESTROGEN, TOTAL, SERUM 60-190 (pg/mL)
CORTICOSTERONE, LC/MS/MS AM: 59-1293
IGF 1, LC/MS 52-328 (ng/mL)
Z SCORE (MALE) -2.0 - +2.0 (SD)
ANDROSTENEDIONE, LC/MS/MS 40-190 (ng/dL)
PROGESTERONE, LC/MS/MS < OR = 0.2 (ng/mL)
ESTRONE, LC/MS/MS < OR = 68 (pg/mL)
CORTISONE, SERUM mcg/dL
DIHYDROTESTOSTERONE, LC/MS/MS 16-79 (ng/dL)
3A ANDROSTANEDIOL GLUCURONIDE, ELISA 251-1503 (ng/dL)
17 HYDROXYPREGNENOLONE, LC/MS/MS < OR = 905 (ng/dL)
IGF BINDING PROTEIN 3 (IGFBP 3) 3.3-6.7 (mg/L)
DHEA SULFATE 70-495 (mcg/dL) 225 prime?
PROGESTERONE <1.4 (ng/mL)
PROLACTIN 2.0-18.0 (ng/mL)
FSH 1.6-8.0 (mIU/mL)
LH 1.5-9.3 (mIU/mL)

T4, FREE 0.8-1.8 (ng/dL)
TSH 0.40-4.50 (mIU/L)
T3, FREE 2.3-4.2 (pg/mL)
T3 REVERSE, LC/MS/MS 8-25 (ng/dL)
T3, TOTAL 76-181 (ng/dL)
THYROGLOBULIN ANTIBODIES < OR = 1(IU/mL)
THYROID PEROXIDASE ANTIBODIES <9 (IU/mL)

PSA, TOTAL < OR = 4.0 (ng/mL)
PSA, FREE ng/mL
PSA, % FREE >25 (% (calc))

ACTH, PLASMA 6-50 (pg/mL)
ZINC 60-130 (mcg/dL)
MAGNESIUM 1.5-2.5 (mg/dL)

24 HR URINE VOLUME mL
17-KETOSTEROIDS 8.0-20.0 (mg/24 h)
CREATININE, 24-HOUR URINE 0.63-2.50 (g/24 h)
CORTISOL, TOTAL 3-22 mcg/dL
CORTISOL, FREE, URINE 4.0-50.0 (mcg/24 h)
CORTISOL, FREE, URINE mcg/g creat
CREATININE, URINE 0.63-2.50 (g/24 h)
CREATININE, RANDOM URINE 20-370 (mg/dL)
CREATININE Metabolic Panel 0.60-1.35 (mg/dL)
eGFR AFRICAN AMERICAN > OR=60 mL/min/1.73m2
eGFR NON-AFRICAN AMERICAN > OR=60 mL/min/1.73m2
BUN/CREATININE RATIO 6-22 (calc)
SODIUM 135-146 mmol/L
CHLORIDE 98-110 mmol/L
CALCIUM 8.6-10.3 mg/dL
CARBON DIOXIDE 20-31 mmol/L
POTASSIUM 3.5-5.3 mmol/L

PROTEIN, TOTAL 6.1-8.1 (g/dL)
GLOBULIN 1.9-3.7 (g/dL (calc))
ALBUMIN/GLOBULIN RATIO 1.0-2.5 ((calc))
BILIRUBIN, TOTAL 0.2-1.2 (mg/dL)
BILIRUBIN, DIRECT < OR = 0.2 (mg/dL)
BILIRUBIN, INDIRECT 0.2-1.2 (mg/dL (calc))
ALKALINE PHOSPHATASE 40-115 (U/L)
AST 10-40 (U/L)
ALT 9-46 (U/L)

WHITE BLOOD CELL COUNT 3.8-10.8 (Thousand/uL)
RED BLOOD CELL COUNT 4.20-5.80 (Million/uL)
HEMOGLOBIN 13.2-17.1 (g/dL)
HEMOGLOBIN A1c <5.7% OF TOTAL Hgb
HEMATOCRIT 38.5-50.0 (%)
MCV 80.0-100.0 (fL)
MCH 27.0-33.0 (pg)
MCHC 32.0-36.0 (g/dL)
RDW 11.0-15.0 (%)
PLATELET COUNT 140-400 (Thousand/uL)
MPV 7.5-11.5 (fL)
ABSOLUTE NEUTROPHILS 1500-7800 (cells/uL)
ABSOLUTE LYMPHOCYTES 850-3900 (cells/uL)
ABSOLUTE MONOCYTES 200-950 (cells/uL)
ABSOLUTE EOSINOPHILS 15-500 (cells/uL)
ABSOLUTE BASOPHILS 0-200 (cells/uL)
NEUTROPHILS %
LYMPHOCYTES %
MONOCYTES %
EOSINOPHILS %
BASOPHILS %
GLUCOSE 65-99 (mg/dL)

VITAMIN D, 1,25 (OH)2, TOTAL 18-72 (pg/mL)
VITAMIN D3, 1,25 (OH)2 pg/mL
VITAMIN D2, 1,25 (OH)2 pg/mL
VITAMIN D, 25-OH, TOTAL 30-100 (ng/mL)
VITAMIN D, 25-OH, D3 (ng/mL) No Range
VITAMIN D, 25-OH, D2 (ng/mL) No Range

CORTISOL, TOTAL 12-200 mg/dL
CHOLESTEROL, TOTAL <200 mg/dl
HDL CHOLESTEROL >40 mg/dl
TRIGLYCERIDES <150 mg/dl
CHOL/HDLC RATIO 5.0 (calc)
LDL - CHOLESTEROL <100 mg/dL
NON HDL CHOLESTEROL <130 mg/dL

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Thanks so much for the hopeful story!

How long would you say you’re symptoms have remained improved? 2.5 years I believe?

How long have you been off the meds you were taking? I believe you said 2.5 years.

Your improved symptoms seem to he better libido, better ability to hold erection, better ability to have sex, anything else?

Your remaining symptoms seem to be low volume ejaculate that is thick/sticky and less libido, anything else?

Hi,

My symptoms have been steady for just about 2.5 years now. So at a high level, I experienced pretty severe symptoms the first 2 years, and then between years 2.5 and 3.5 roughly I got to a level which I was content with.

I know there was a lot of information and I tried my best to make it as easy as possible to follow. So I am going to add a little more info now as revisiting this had me wonder about

One thing I don’t know is am I at where I am because of my age or is it still fall-out from PFS. Revisiting this made me want to try to understand what my levels are now. One reason I have not 100% kept up on my hormone levels was I did not want this ruling my life. Once I was able to slowly get to a “functional” level I did not want to push it to be 100% back to normal as my normal was a super high sex drive. That was somewhat debilitating for me too having to masterbate 3 times a day and still wanting more. So I almost feel like I am more of a normal person now without as high of a sex drive. Also, when I was going through this, it consumed my life. So once I got to a reasonable level and I was able to taper off the medications, I was and still am happy. (I do miss being able to have sex for 4 to 6 hours and ravage my wife, but it is ok that I can’t do that anymore). If I was to slip back where I could not keep an erection, I would definitely look at resuming medication. But I am not of the camp of doing super aggressive treatments that could make things worse long term once you got of that protocol.

So, yes, my symptoms have improved and have been stable for 2.5 years. I have been off the meds for 2.5 years. Other improved symptoms, I don’t recall if I mentioned this in my previous post, but I think I did. Along with the super high sex drive I had a super short fuse temper-wise. That is also another reason I am not trying to get back to my “normal”. I like being able to control my anger/reactions. Many people noted how it was like night and day. So for me personally, they all tie in together and I made a personal decision I guess you can say at what type of recovery was best for me. Also, occasional (not very often at all) morning wood. I used to be able to beat a wooly mammoth to death with it in the morning, which usually led to my first masturbation session of the day. So again, not having that has it’s pros and cons.

The other remaining symptoms seems to me I do not get a rock hard as I used to and due to that I lose some girth and length. I would like to have that back, but I could probably experiment with rings and stuff like that to help. Maybe at some point I would go back on the DHEA and Progestorone if I felt I needed a boost.

So all this leads me to I was getting blood work for surgery last week. So I had some of my high level hormones checked. Here are some of the results and I will make comments as per my previous results going back 2.5 to 6 years prior as comparison.
Testosterone Total MS - 745 - This is a bit low as my previous average was 900
SHGB - 55 - This for most is bad. My previous average was 80, so I am quite happy with where it is. I am sure if I applied some focus on meds like before, I may be able to drive this into the 40s. Then I would see increases elsewhere that would be positive.
Testosterone Free - 68.6 - This is low for me. I am normally more along the lines of 110ish. I am guessing that this is due to my lower Total T number combined with my not bad for me SHBG number. Again, if I push my SHBG down, this would come up from experience.
Testosterone Bio - Again a bit low at 135. I am normally about 165 or so. Same analysis as above.

Now some other numbers I would be interested in would be my estrogen as I forgot to ask for that and my prolactin, and my DHEA and Progestrone the next round of blood work. Maybe I will do that in about 3 months and let you know the results.

Now could some of these numbers have come down due to my age? Possible. But looking at it objectively it may be that it is a combination of that and I have trended downward a little. But it is hard to tell. I just try to look at all the other blessings I have in my life and if this is not perfect, it is ok.

Ohhh, one other major, major complication I had from PFS I did not mention above. Those first 3.5 years I had major brain fog. I used to have a memory of an elephant. Then all of the sudden I could not remember what I ate for breakfast, tons of issues. That was just as frustrating as the sexual side effects. As I progressed, I lost the brain fog. So that is another reason I am ok where I am at now. I am a bit scared to mess with things as I don’t want to go for perfect and regress in an area I regained most normalcy. I hope some of this helps, maybe it will give some hope. I pray for the best for everyone here that has been effected by this horrible drug. Before taking this I would have never worried about a vaccine. After this I was super worried about the vaccine. But I did get it anyway and lucky things seem ok to date on that front.

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Hi @bb121, has the brain fog disappeared completely?

Yes, the brain fog has disappeared completely.

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Have you taken any meds to help it or only time was the cure?

Well, I started out with doing some of the suggested protocols on here and other similar sites regarding the gut. Honestly, I did not see much of a difference. I also tried supplements such as PrimeMale which did seem to help lower my SHBG by about 20% which was significant. By getting frequent blood tests (every 3 months for 4 years), I could keep notes and see what had what impact. It did also seem to help my brain fog. But it did not make it go completely away.

I also had low Progesterone and low DHEA which were easier fixes with those supplements.

This is hard because I think everyone is impacted differently by the medication. At the same time, I was also taking some other supplements such as boron, some roots (which I forget what it was) sorghum, etc.

Why was my focus on SHGB? Well, my theory for me was this. I always had a very high level of T in my body and a normal level of SHBG. This is why I always had a very short fuse. After the second time I started taking finasteride, I think it screwed up my hormone chemistry. Finasteride attaches to SHBG making it so you have less SHGB. SHGB attaches to Testosterone. Given I already had a high level of T, the reduction my body saw in the ability of SHGB to bind to the T, it said to my body “kick into high gear of making SHBG”. That is why I then had SHGB levels of 80 and I might have had levels of total T of 974, 1150, or even 1325, but I had so much SHGB it was bringing down the free T levels to in the 40s.

I know a lot of people with PFS struggle with not having a sufficient amount of T to start with. I luckily did not have that problem, but I ended up in the same boat as them due to finasteride supercharging my body’s creation of SHBG as it was trying to overcome the effects of finasteride attaching to my SHGB. I hope that makes sense. So my levels are still off, they are just what I will call borderline where I can have a somewhat normal life.

Do you have blood work to share that can help try to pinpoint down what is high and what is low for you? I don’t think without constant bloodwork you can really know what to target. Do you have blood work to share?

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I had some basic one a year ago and doctors said everything is within normal ranges. I might get some proper test soon

The tests you linked only looks to have the ref ranges, not your tested levels? Or am I reading it wrong?

I have attached a few years of test results. Test Results Near the bottom you can see some notes of what I may have been taking medication or otherwise and how I was feeling so I could correlate it to the results to try to see where the sweet spot was. I just was not willing to do some of the protocols that Dr. Jacobs or others were calling for like Clomid and AI, or naltrexone,

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Congrats bro! I can relate too much to the first part of your story. Like you, before getting wacked I used to
be a nympho (3 times AT MINIMUM per day, which surely was bad and drained my energy) have morning woods everyday and VERY hard, and spontaneous as well.

But I think I had an hyperactive HPA Axis (was very very anxious person, and also was, like you, impulsive as fuck). And well, I guess that’s the very reason of this Syndrome: HPA Axis Dysfunction.

Basically, when hyperactive, it tends to make us hypersexual, anxious, impulsive, stressed, etc. All about the adrenal glands and it’s reflex over hypothalamus and pituitary.

When lasting too much this activity turns down and the axis is wacked. I think Fina and various other drugs mess A LOT with this axis, and in turn our whole endocrine system is fucked then again (including gut -which is very linked to hormonal balance-, liver, pancreas, testes etc).

That would also explain why lots of cases here experienced a period of hypersexuality and stress right before the crash, which tanked their sexuality, their emotions, their mental function, etc.

You said you took DHEA and Pregnanolone. Aaaaannnnnddddddd:::::: both are precursors of those very Adrenal hormones that are not being produced because the axis was burned. Just like it happens when people have a burnout, or have PTSD, TBI, etc.

So I’m double happy: for you and because I think its more clear for me now how to approach this hell. But we’ll, I could surely be wrong.

Anyways, thanks for coming back and sharing hope and information. Very appreciated!!!

And excuse me to ask you some questions:

  1. Nowadays do you have the real urge to have sex?

  2. Did you workout while recovering?

  3. Did you continued your dietary measures even thinking it as bullshit?

  4. Do you meditate, or practice yoga, or sports, or so?

  5. Do you practice any healthy lifestyle?

  6. Do you drink or smoke? Have you stopped in case of “Yes”?

  7. Did you have physical symptoms like shrunken balls/cold penis/increased hair loss/hair thinning/ penis curvature/thinned wrists and legs?

Sorry for too much questions. And thanks again :slight_smile:

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  1. Nowadays do you have the real urge to have sex?
    Nothing like I used to. Which for me is a good thing. Because when I didn’t get it, I would get mad, you know the circle.
  2. Did you workout while recovering?
    No, I tore my shoulder up lifting 2 years prior and the surgery to fix it was not successful. So struggling to lift a barbell was super depressing after I used to do 3 sets of 245 lbs 8 times. So I stopped lifting.
  3. Did you continued your dietary measures even thinking it as bullshit? I did not. I did it for a while, and when I did not see any improvement I went the route of getting as many tests as I could so I could see how the numbers changed along with the most important thing, how I felt. Once my brain fog cleared, then it was only about having “normal” sexual desire or being able to perform. Not to get back to my old self as I never liked being that amped up.
  4. Do you meditate, or practice yoga, or sports, or so?
    No, I am old now. I am 51 at this point. This happened to me when I was 45. I am about to try to get a little more active now that I just started my second retirement which is what gave me an opportunity to post in here.
  5. Do you practice any healthy lifestyle?
    I don’t drink, I don’t smoke, my breakfasts are horrible such as McDonald’s and I drink 8 cans of soda a day. My other meals like lunch and dinner are pretty much very healthy meals cooked to order.
  6. Do you drink or smoke? Have you stopped in case of “Yes”?
    Neither
  7. Did you have physical symptoms like shrunken balls/cold penis/increased hair loss/hair thinning/ penis curvature/thinned wrists and legs?
    As mentioned above, I feel I lost girth and legnth, but that is also due to not having a raging erection like I used to. I used to be able to make my dick jump up and down and the head pulse right before I experienced this. That went away overnight. I am too scared to try to push for a “fuller” recovery that I could knock myself out of the range I am in now that this is the worst of what I still experience. That is ok for me and not worth the risk of going back to getting a 20 minute blow job and not being able to get hard or the brain fog.

It is just my personal opinion from what I have read on the boards over the years, most people don’t seem to get regular testing to see what is really happening inside and correlate it to how they are feeling. I felt Dr. Saya in Tampa, FL was able to work with me on that as we did not go super aggressive as I did not want to go that way. I did not want to have to be on Testosterone therapy for the rest of my life like some of the other doctors like Jacobs and Crissler wanted to do to me. Best of luck!

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Hello. Do you think that your brain fog would disappear if had not taken any medication?
I personally don’t know my blood levels. I went toy family doctor and they told me my blood is fine

It is hard for me to say for sure. I just quickly glanced at some of my notes and other journals I was keeping at the time, and I did not keep enough notes on exactly when I felt the brain fog issue went away. You see, once I started trying to do some sort of self medication, I was tweaking it based on my blood results and how I felt. So it is really tough to tell as I was taking something.

I am not sure where you are located, but when you say your blood levels are fine, most doctors only do basic testing and do not touch on hardly any of the tests that are needed to diagnose PFS. Ask for a copy of your test results so someone on here can review them to see if they are at all helpful.

If you look at the blood levels I had checked, most of the doctors I saw said I had one of the most extensive blood test sets/analysis they had seen. I got the recommended tests from this site on a page that appears to no longer be up. It was http://propeciahelp.com/testing and here were the suggested tests. I am not sure what has changed over the years as I have not really kept up on it.
Total Testosterone
Free Testosterone
Bioavailable Testosterone
Androstenedione
Androstenediol
DHT
3alpha-diol G
Androsterone glucuronide
Estradiol (E2) Ultrasensitive
Estrone (E1)
Total Estrogens
LH
FSH
DHEA-S
Vitamin D
Cortisol (24-hour urine sample)
Cortisone
Corticosterone
Aldosterone
Deoxycorticosterone
SHBG
Prolactin
Progesterone
Pregnenolone
17-OH Progesterone
17-OH Pregnenolone
Albumin
ACTH
PSA
TSH
Free T3
Free T4
IGF-1
IGF-BP3
CBC or FBC (Complete Blood Count/Full Blood Count)
LFT (Liver Function Tests - AST, ALT, GGT, Bilirubin, etc.)
Androgen/Estrogen ratio
Testosterone/DHT ratio
17-ketosteroids (24-hr urine sample)
Magnesium
Zinc

Just for others reading this, Dr. Irwin Goldstein also had me do a doppler duplex color-flow ultrasound,
Quantitative sensory testing and I have had my pituitary checked for tumors, it is ok. I have had testicular ultrasounds, they are ok

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Thanks for info. I live in UK. I guess there should be a testing centre here which can give me extensive blood results, but tbh I want to get better just by waiting it out, that’s why I was asking if it was supplements or time which cleared your brain fog

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