4 years dealing with this and progressive worsening

Member Stories
#1
  1. Where are you from (country)?

Spain

  1. How did you find this forum (Google search – if so, what search terms? Via link from a forum or website – if so, what page? Other?)

Google Search

  1. What is your current age, height, weight?

29, 188 cm, 100 kg.

  1. Do you excercise regularly? If so, what type of excercise?

3/4 times a week, heavy weights, running, football.

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

Mediterranean diet. Now trying a Paleo diet + 16/8 Fasting. No improvements so far (10 days of diet)

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

Hair loss

  1. For how long did you take Finasteride (weeks/months/years)?

4 years roughly

  1. How old were you, and WHEN (date) did you start Finasteride?

21

  1. How old were you when you quit, and WHEN (date) did you quit?

25

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

cold turkey

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

Proscar and for 2 or 3 months saw palmetto

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

1 mg a day

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

First 3 years i felt no side effects. Over the last year use, i noticed low libido and weaker erections

  1. What side effects did you experience while on the drug that have yet to resolve since discontinuation?

Almost 0 libido, terrible impotence, severe ED, some mental issue (i forget simple things)

Put an X beside all that apply:

Sexual
[ x] Loss of Libido / Sex Drive
[ x] Erectile Dysfunction
[ x] 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
[ ] Reduced Sperm Count / Motility

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

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

Misc
[ ] Prostate pain
[ ] Persistent Fatigue / Exhaustion
[ x] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[ ] 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?

Not done much to be honest. I took maca (no improvements) and some vitamines in different periods of time, no special improvements either.

  1. 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)?

I dont

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

As i am lost and many things are always coming to my mind, im considering giving a try to the nystatin/antifungal protocol. One year ago i was diagnosed with a superficial fungus, concretely i have white spots in my back and my chest. I was said this is harmless and just a question of looking, but in my view this might be linked with the PFS. I was prescribed with itraconazol (pills) and sertaconazol (spry) to tackle the fungus, and im also considering to take Nystatin and Dufocan as it seemed to work for some othe guys here.

To be honest, i´m tired of this and tired of seeing no solution to my problem, the time comes by and this bloody syndrom is taking my youth away. I wanna try something but i don´t know what or why. This is how desperate i feel now.

On the other hand, i have been doing the paleo/Intermittent diet 16/8 fasting that is covered by some topics on this forum.

  1. Tell us your story, in your own words, about your Finasteride usage and side effects experienced while on/off the drug.

Well, i used the drug for about 4 years. During 3 of them, i felt no side effects but over the last year of use i progressively noticed a lack of libido and softer erections where having sex. Then i stopped the medication. Actually, i reckon i experienced a kind of progressive crash, over the 2 years after stopping i saw a progressive reduction of my sexdrive and erections. Also, when i stopped the drug, I also had severe brain fog, but at the moment is pretty gone. My main problem is that i thought i could get better with time, but i have to say that it has been the opposite. Now, almost five years after stopping proscar, i hardly think of sex, i have no libido (no matter what im doing, watching or touching) and the most important thing, i feel a total disconnection between brain and penis. Before the drug i could get an erection just by thinking, now that is totally impossible, only when i touch myself i can have a mild erection, never full though. I feel like my penis is smaller as well, and when i get an erection, it never gets as big as it was.

Finally, i can never have sex twice a day (one average good time is more than enough to me). Frequent urination is also an issue, i have to urinate almost every 3 hours or so, but i have seen some of improvement in this area as well.

In terms of blood work, i dont wanna post here all of them, but in short, i have had the prolactine over the range for a year, still have it, but my GP told me that this values cannot lead to my symptoms. So i think.

Regarding doctors, i have visited many over this nightmare but i just heard the common topic: “you are sane”, “you should better see a mental doctor”, ect.

Ah, I have never posted before because i didnt have much time to fill in this question panel, but im a longtime user of this forum.

Thank you for being there and being helpful.

#2

Well guys, i´ve just come back home from the analysis clinic.

My bloodwork values corresponds with the following values:

PROLACTINE: 6.7 (max. 8)
DHEA-S: 358 (238-591)
ADIOL-3G: 16.7 (1.53-14.8)
DHT: 0.56 (0.25-1)
SEROTONINE: 116 (40-400)
25-OH-VIT-D: 36.1 (30-80)
SHBG 35.8 (10-80)
FREE T3 TOTAL: 3.94 (2-6.8)
FREE T4 TOTAL: 1.35 (0.8-2)
TSH: 1.4 (0.3-4)
TESTOSTERONE: 3.14 (2.8-10)
FREE TESTOSTERONE: 9.8 (9-15)
FSH: 2.6 (2-8)
LH: 2.7 (2-12)
17-B-ESTRADIOL: 41 (7-42)
PROGESTERONE: 0.39 (Max. 1.4)
HGH: 0.05 (0-10)

Well, it has been more almost five years that I stopped the drug and this is the first time my Prolactine comes up in the normal range. As far as I know, high prolactine is related to depression. To be honest, i dont feel as depressed right now as i was in the past, so this may has a point.

On the other hand, something that apparently doesn´t change are the low LH/FSH values. I don´t know what to do about this as my endocrinologist said this results are not enough for starting an hormone treatment because “i´m perfectly healthy”. Noway, I have a terrible lack on libido and having sex is almost an odyssey to me. Any comments or advice would be more that appreciated.

Cheers.

#3

Your Estrogen is near top of range. Elevated estrogen in men can surpress Testosterone/libido/erectile function, your Testosterone is near bottom of range. Reducing estrogen could help in these areas. There are natural supplements which may aid with this, or medications such as low dose Arimidex.

Same goes for prolactin, consider investigating natural ways to reduce it (Vitamin B6, chastberry/vitex).

Essentially it would appear there is a Testosterone/Estrogen ratio imbalance which if corrected, could lead to improvements,.

#4

It’s amazing to me that your Endo would say your LH and FSH are normal considering your age. My results were very similar to yours and my Endo also said they were perfectly normal…for a 95 year old man. He said the combination of low / borderline LH, FSH, Free T and Total T were highly abnormal for my age and diagnosed Secondary Hypogonadism. I’d definitely get a second opinion. Try find a young, open-minded, progressive Endo if you can.

#5

Thank you both for your comments.

Well, this is the third endo i have seen in 2 years and SHE is the only one who accepted that i might have a real problem as the other said this was all in my mind, so this is my best bullet. If I dont get any treatment after my next visit (6th Feb), i will try to find another one, but im very tired of doing this.

With regard to my hormonal panel, I would like some advise/treatment on how to treat my hormones that i could discuss in my next visit to my endo.

By the way, i have been working a lot recently and i can claim that i have gotten some improvements by stopping frequent masturbation. Doing this is like having my gun a bit load, nothing to do with the pre fin status, but definitely better sensibility and more pleasurable eyaculation.

#6

Well, it is saturday and i´m at home just thinking about the latest news regarding my health.

This post has little to do with my previous comments, basically because i didnt know I could have another terrible nightmare related to PFS. Well, maybe not and it is part of this gloomy dream i have been sufferingm for over the last 5 years. I am by far a different person and my luck is totally gone.

In this context and adding a bit of information that i judged as irrelevant, I have been diagnosed with a pituitary micro/macro adenoma, whose size is 1cm right now, so it is exactly in the limit between the metioned definitions.

I meant irrelevant because 18 months ago i had a MRI of the pituitary gland and my endo said there was a small spot that could be a microadenoma (1 or 2 mm.) so i had to have follow-up every 6/9 months to monitor its growing. Well, as i lived in Africa during the last year and i didnt think that spot wasnt going to be anything dangerous, i didnt go for any other MRI, because the doctor said that due to the reduced microadenoma size, it could not lead me to anykind of side as i claimed to have. So i just let it go.

Unfortunately, when i came back to spain i had the MRI doine and the spot turned to be a microadenoma that has grown more than 8 mm in the last 15 months (which is very uncommon) or so and i will probably have surgery if it grows a bit more. At this point im totally destroyed. Furthermore, it seems to be a non-functional adenoma so, in words of my endo, it is not responsible for my inexistent sexual status but, as the bening tumor has to be removed, I could have some hormonal sides out of the surgery. In other words, after not having the microadenoma either i stay as bad as now or i get worse.

Apparently finasteride cannot be responsible for the existence of this tumor, but something inside of me blames this bloody pill for all my hormonal problems.

Amazing life.

#7

I’m sorry for your situation. I had an MRI too because of my 86ng/ml prolactin;in my case there was no tumor but a morphological variation and relative dysfunction, according to my endo. I’m on Dostinex now to lower prolactin and to correct this dysfunction, and I’ll withdraw it soon. But honestly I don’t think the prolactin will stay low, and in any case lowering the prolactin didn’t help much. Similarly, as you said, your tumor has probably nothing to do with your sides. Ok take it with a grain of salt, but many say (and there are some related studies) that prolonged fasting should shrink benign tumors. We know to some extent (limited statistics) that it helps with fin sides too. If you are really desperate, before going for the surgery, consider this possibility, which unfortunately isn’t much reviewed in the scientific literature. Tough there are some MDs that use the therapeutic fasting.
I don’t want to push you in this direction. But this is probably what I would do in your situation, and it is what I’m going to do for mine.
If you haven’t already, review this thread
viewtopic.php?f=6&t=6142