Please help

Member Stories
#1

  1. Where are you from (country)? USA

  2. 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?) Search

  3. What is your current age, height, weight? 27, 5-10, 170

  4. Do you excercise regularly? If so, what type of excercise? Work hard, light excercise

  5. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)? mixed but i try to keep it decent

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

  7. For how long did you take Finasteride (weeks/months/years)?
    3.5 years about

  8. How old were you, and WHEN (date) did you start Finasteride?
    24

  9. How old were you when you quit, and WHEN (date) did you quit?
    27

  10. How did you quit (cold turkey or taper off)?
    Ran out for 5 days, went back on for a month and quit due to sides.

  11. What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic?
    Fincar for 1 year proscar for 2.5

  12. What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
    1mg though irregular because I split the pills

  13. How long into your use of Finasteride did you notice the onset of side effects?
    Had minor sides while on the drug, and others that I now attribute now that I am off of it. Noticed major sides the last month I took it.

  14. What side effects did you experience while on the drug that have yet to resolve since discontinuation?
    Slight prostate pain

Put an X beside all that apply:

Sexual
[x ]0 Loss of Libido / Sex Drive
[ x morning Erections
[x ] Loss of Spontaneous Erections
[x ] Loss of Nocturnal Erections
[ x] Watery Ejaculate
[ x] Reduced Ejaculate
[ ] Inability to Ejaculate / Orgasm
[ x] Reduced Sperm Count / Motility

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

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

Misc
x] Prostate pain
[x ] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[ ] Vision - Acuity Decrease / Blurriness
[ ] Increased hair loss
[ ] 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?
    Vitamin D3, zinc, vitamin E

  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)?
    Visiting doc tomorrow

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

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

Took Fin for 3.5 years, had good results. I had some minor sides that I only now know about because I’m off. Stumble over words, minor depression. Had some pain in prostate but did not think to attribute it to fin. Finally ran out of supply and had a bit of a time getting some. Started on fin 5 days later and began noticing sore testicles. Continued thinking that sides would go away for 30 days. Began searching and found this website and quit immediately. Sides resolved for 4 days and had the surge of DHT, thought everything was ok. On day 5 I had ate some sugar and went in a hot tub and when I came out my entire endocrine system crashed. I could not feel any emotion whatsoever and my penis was dead. I went to bed thinking I would be better in the morning and I was. Penis became inconsistent with erections over the course of 2 weeks. I began to eat well and thought I would recover normally, but then crashed at about that time. Recovered some but testicles began to get softer and sex drive began to erode. More pain in prostate. Ejaculate became less and less and I started freaking out. Now at week 5 and I am beginning to notice the crooked penis, it is curving up and I’m totally losing it right now. I got some vitamin E iu1000 and took them. My penis is shriveling up and my testicles are very soft. I have an appointment for tomorrow and am going to try to get blood tests. I’m in a bad place right now and very scared, shaking while I type, please if you know anything I can do please help.

#2

patient b, welcome to the site. If you look carefully at the top of the Blood and Hormone Testing forum you will find a list of suggested blood tests. I would highly recommend printing out the ABC News article that covers Traish, Irwig’s studies, and the lawsuit, and bring it along to your endocrinology visit, as there are still many endos that haven’t realized the damage that fin does.

Get a complete workup for hyogonadism (including DHT and estradiol) and thyroid (including T4, T3, rT3, TBH) at a minimum.

Some of us (I think about 40 or 50%) have gotten periods of relief from raising testosterone levels. Generally I get a couple good weeks followed by 5 or 6 poor weeks, but clearly better than before. Get good exercise but no excessive cardio - stick to sprints/short bursts of intensive exercise once a week. Lift heavy/low reps once a week as well. Stay away from processed foods (anything out of a box). These will all encourage endogenous (your own internal) testosterone and growth hormone production. Limit alcohol as it triggers estradiol production.

kazman

PS on edit I see you are in Idaho. The closest post-fin treating doctor in your area is Jonathan Wright MD in Tahoma, WA:
tahomaclinic.com/

#3

Kaz,

I phoned that clinic late last year and spoke to the patient care coordinator. They had no idea what I was talking about and said they would call me back. When she did she said they didnt know how to treat us and were not accepting PFS patients. They were so in the dark they actually just advised me back to this forum (I guess not knowing I was already a member) for further info. This was after another member posted they talked about PFS in meetings daily. If they have since changed their minds and are attempting treatment, thats great. If anyone finds out could they please update that in the doctors section of the forum with the name of who to contact since apparently there is some confusion.

#4

OK i have bloods coming monday. I’ve gotten slightly better since I posted last because i was having a major crash then. I’ve been working out several times a day to keep testicle size up. I seem to be having diabetic like symptoms occasionally. I got a blood sugar tester but it didn’t show anything unusual. Ill check it when I’m having an episode. It seems like my body tries to recover, my nuts get firmer, and then I crash out. I seem to be losing hair also. I think my case may be recoverable but we’ll see if the urologist finds anything. I realize that trip may be a waste but I think i want to go to get him to check my prostate.

#5

Heard from the secretary on the phone that my prolactin is high and everything else is ok (not sure about the ranges yet). Went out and got myself some vitamin B6 and started putting it down. It’s helping bigtime. Hypogonadism is going away, nuts grew back to size, had a morning erection and can get it up if i work on it a bit. I still have some ED and low libido. Thank God i don’t have hypogonadism, obviously I was scared to death which made it even worse. I was doing hard pushups every 3 hours to keep my testicle size up before, yes i even woke up in the middle of the night to do them, and I had no wood. Still working on my ED and libido issues, gotta figure out why my prolactin went up. I think I’ll get a copy of the bloods and go from there. Hopefully this holds out and I don’t have other problems…

#6

My bloods from 3 weeks ago showed rock bottom T, free T, and high prolactin. My LH and other things looked good. Didn’t get estridol. Been taking 100mg vitamin B6 consistently and it is still helping big time. I seem to be making good strides. Libido is coming back and I can get a wood when I want. Semen volume is up too. I can feel the lights starting to come back on. Seeing a urologist and getting some bloods in a few weeks. Try some b6 if you haven’t allready, it’s supposed to lower prolactin.

#7

What is your SHBG and estradiol? get those next time. if you got money to burn, get FT3 FT4 RT3 TSH Thyroid Antibodies (latter optional i guess?). If you can, try to get your uro/phsysician to do a trans-rectal ultrasound. MORE money to burn?! Wow, well you could do 24h saliva test and get your cortisol readings from it.
Sorry, a bit of humour but yeah. Should be essential readings so far. If you got patience then you could try a month trial with dolichol, aka spinach! Check the dolichol deprivation topic in Theories section.

#8

I wanted to post this in the recoveries section but it won’t let me so I though I’d post what I know here. I don’t know if this is of any help but I thought I would post up what I did incase I managed to stumble on a cure as I feel for everyone here, I offer a few theories and ideas as well. I haven’t been posting since my original post, but I have been reading tons and tons from this site during my ordeal.

Ok, this is my original post: viewtopic.php?f=3&t=5034&p=35924&hilit=idaho#p35924

Since my crash, my recovery has been very slow. Two steps forward, and one big step back the whole way. The first thing that I did that was a major help was to take vitamin B6 (pyridoxine). During my crashes I took 200mg. It is supposed to lower prolactin and seemed to help me maintain testicle size. If I stopped taking it things got worse. I continued to take 100mg a day for 5 months. I don’t know if it has any side effect that may have helped cure me, but that is what I did. The thing that I noticed from the people who have recovered was that they did regular light exorcises, like jogging or swimming. Going for a light jog helped me but I always seemed to crash back to low normal after a while. I also work outside and do a lot of walking. At the 3 month mark I had recovered quite a bit, but was still suffering from low libido, low amounts of messed up semen, and shrunken nuts. One thing that I tried when it got bad was to work out continuously through the day to keep myself going, kind of like a HPTA restart by working out every hour of the day. I called it the HPTA rolling start. You gotta keep on working out to keep your testicles going. Every hour I would do some pushups, situps, pullups, or wind sprints. I did this for a few days in a row. This seemed to help but I would always crash back down after I quit. Still shrunken nuts and low libido. At the 5 month mark I tried a number of suppliments that didn’t seem to do much, but then I tried a multivitamin called KAL high potency soft multiple. At the same time I began swimming laps for 30 min every day. After 2 weeks the lights started to come back on and my testicles gained their size and held it. Libido came back, penis looks much better, semen is good. Near full recovery and I seem to be getting better still. The vitamins made me drowsy and I almost got in a car wreck from it, so I haven’t taken them for 2 weeks and am still doing well. I don’t know if they had anything to do with my recovery, but that is what happened.

What I think is happening is that our hypothalamus somehow gets confused because of the quick change in our hormones from quitting fin. I think it has some type of hormone measuring mechanism and once the balance gets upset it just locks down like a crashing computer and when it wakes up again it tries to get it together but can’t remember the past settings it had because all of the feedback loops and whatnot get messed up because of the scattered hormone levels or possible fin damage. A trial and error process begins to bring it back up to speed. I think that working out may nudge the hypothalamus in the right direction until it can carry on as normal. Just a thought.

Good luck to you all.

#9

Terrific news.

Keep up the good work.

This is more proof of the whole Androgen Insensitivity thing being bullshit.

#10

Hi patientb

congrats on your recovery!! :slight_smile:

can you post to the ‘KAL’ you refer to please?

Thanks

#11

Here is the multivitamin. It might have helped, can’t say for sure but for 10 bux it might be worth a shot. It’s super strong with everything under the sun in it. compare.ebay.com/like/180712555312?var=lv&ltyp=AllFixedPriceItemTypes&var=sbar

#12

Patientb, I’m glad you are feeling better. However, there is a caveat here:

I, and MANY others, likely already take multivitamins on a daily basis, or have taken them before/after Finasteride. It has made no difference for many in terms of restoring loss of libido, penile atrophy, gynecomastia etc, nor would it be expected to. Personally, I have seen absolutely no change in symptoms with multivitamin use, either before/after Finasteride (ie, it did not alter my sexual function before drug, nor did it make any difference after). The caveat is that if it were that easy to recover from the effects of androgen deprivation (by taking a multivitamin), this site wouldn’t need to exist and molecular level research would not be going on into the problem. I am not trying to “downplay” your recovery status, simply pointing out that multivitamins have not been a cure for anyone here over the years from my recollection (and personal experience).

On the other hand – if you had a medical diagnosis showing elevated prolactin problem, then bringing it down would probably assist with HTPA feedback regulation and possibly nudge things forward in the libido/hormonal department. That said, my guess is your issues resolved 1) naturally over time and 2) possibly due to lowered prolactin, if you have bloodwork to confirm it.

In either case, the fact you have made improvements naturally is quite simply the best outcome anyone could hope for (no need for pharmaceuticals). Glad to hear you are doing better and good luck going forward.

#13

True. I think that by doing quick burst workouts and lowering my prolactin with high doses of vitamin B6 I might have nudged my way towards hormonal balance and recovery. From my own experiences, when I did nothing, I made no improvements. I can confirm that my attempts were responsible for my recovery. This might be helpful to someone who has made some recovery but is in a down regulated, low T state, as I was for 5 months or so.

My theory, based on my own experience is that the hypothalamus has trouble making large and sudden adjustments to hormone changes. I think that this is so because once a small change is made, all other feedback loops and various levels must be recalibrated. Too much of a change results in another crash. For instance, when I masturbated, orgasm = more prolactin and a crash. It could be possible that one might recover by making only incremental changes slowly, somehow, and letting the body recalibrate. I really don’t buy the more complicated theories posted here, as I experienced the full range devastating symptoms and made it back. I think it’s worth looking into.

#14

I have been taking around 100mg Vitamin B6 daily for the past few weeks and it seems to have helped me.
I would doubt that i had a Vitamin B6 defiency, but i’m assuming that the 100mg daily dose has helped to suppress prolactin levels.

Hopefully this may be of help to someone else on the forum who has high prolactin levels, like i did after quitting propecia.

#15

I don’t have high Prolactin levels, but I do have low B6 levels.