Advice please

Member Stories
#1

COPY AND PASTE THE FOLLOWING INTO YOUR OWN PERSONAL PROFILE POST, then answer the questions.

  1. How did you find this forum? google search
  2. What is your current age, height, weight? 45, 5’8", 170
  3. Do you excercise regularly? If so, what type of excercise? Yes, jog
  4. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)? Used to be vegetarian - have added poultry
  5. Why did you take Finasteride (hair loss, BPH, other)? Hair loss
  6. For how long did you take Finasteride (weeks/months/years)? 12 years
  7. How old were you when you started Finasteride? 33
  8. How old were you when you quit? 45
  9. How did you quit (cold turkey or taper off)? Tapered the first time
  10. What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic? Propecia
  11. What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)? 1 mg
  12. How long into your use of Finasteride did you notice the onset of side effects? Noticed some effects (lower ejaculate, some ED, less sensitivity, etc. but used for years without too many other issues)
  13. What side effects did you experience while on the drug that have yet to resolve since discontinuation?

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
[ x] Inability to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

Mental
[ ] Emotional Blunting / Emotionally Flat
[ ] Difficulty Focusing / Concentrating
[x ] 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)
[ ] Penis curvature / rotation on axis
[ x] Testicular Pain
[ x] 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
[ x] Prostate pain
[ x] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[ ] Vision - Acuity Decrease / Blurriness
[ x] Increased hair loss
[ ] Frequent urination
[ ] Lowered body temperature

[ x] Other (please explain) Have been having shortness of breath - went to cardioloigist and my heart rate is only 37 beats per minute. Always was low (48-55) but now is so low having fatigue

  1. What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug? Tried numerous herbs and vitamins

  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)? a few weeks after quitting had testosterone and it came back normal at 500

  3. Anything not listed in the above questions you’d like to share about your experience with Finasteride? I think I had only minor problems noted above but then had too many times where I would stop the drug for a few weeks and go back on. This on and off seemed to accelerate the problems

  4. Tell us your story, in your own words, about your Finasteride usage and side effects experienced while on/off the drug.
    Was on the stuff for 12 years - I never really thought it grew hair but it did seem to help me hold onto what I had. OK - the last two years I have noticed some really bad shrinkage - at first it was just a few times here and there but my penis/testicles would shrink to almost child size and felt like rubber. I went to my primary and tried Levitra - worked like a charm when everything down there was was normal size but started having issues on days when really small. Started to really worry about blood flow to penis; I have high cholestrol so I thought this may be symptoms of hardening of arteries, etc. These “small days” became more common and I also noticed less sensitivity and less ejaculate. Also noticed less libido. Ialso noticed some bad pain behind/in my left testicle, seems to be the “tubes” connecting it or even some torsion. I would cut my ED pills in half or quarters and take just to get back to normal size when flaccid.

Found this site in December and started to freak out- many of the same symptoms, etc. Wanted off the stuff right away but weened off over two weeks. Started taking some NO herbs, tenaga, zinc, multi vitamins, horny goat weed, etc. to get libido up and everything back to normal. Like others it did seems some funtion returned even had some hard morning erections which I realized then it had been years since I had these. Had my testosterone tested a few weeks later and was at 500 which seemed OK. Decided to lose a bit of weight and start running agian to help fitness and hopefully raise testosterone even higher.

Fast forward to May/June and it seems things were getting worse. Started really having fatigue all the time and while jogging. Went from being able to jog 4-5 miles to only two without really getting winded and also felt like my heart was tight. I started to think my heart/high cholestrol was the issue - maybe the arteries to the penis were slightly blocked. Went to my primary doctor three weeks ago and told of the heart tightness/short of breath/fatigue. Turns out I had a ridulously low heart rate (37 per minute) sent for stress tests etc. She also put me on a low does statin (Lovastatin) to lower the cholesterol. My hair texture instantly changed - started getting really fine, thin, wispy and my whole scalp was burning. Started looking my head and feeling I was instantly balding. Thought it might be the statin or just stopping propecia six months prior was finally catching up. No improvement on the sexual sides so I decided to just take a quarter of a pill a day. Yes I know this is stupid but was getting really worried about losing all my hair and was thinking about early on with propecia when I never really had any problems. Maybe with a low dose my body would find the right balance?

Things got worse right away - now the pain behind the testicle is really bad. The shrinkage is ridiculous - even with ED pills I having trouble getting erect, I have zero libido.

Stoppped the propecia obviously - only took a quarter pill for two weeks so hopeful that will not last. Started the broccoli treatment four days ago - not really seeing any impacts.

Right now my penis is dead - totally small, rubbery, pain in the left nut and even feel like prostrate issues. Going to cardiologist about the slow heart rate - I think this contributes as well as a urologist this week. Kind of embarassed to even go given the very small state. Have lost half girth and probably 1/3 length.

Any advice on what I should do right now? I live around Pittsburgh - not sure if anyone has any doctors around here.

#2

Did you have shrinkage long before you quit? I noticed my flaccid hang was slightly smaller and even started measuring it (erect seemed same), balls also felt smaller one morning but never really checked after that…this occurred on last run quite quickly but still no rubbery feelings or anything like that until after I quit.

#3

Welcome to the forum Scaredtodeath,

You have taken a good first step to rid your body of that horrible poison.

Your post is a little confusing though regarding when you quit and when you went back on. You mentioned you quit in December when you found this site. When did you take a quarter pill for two weeks? Was that shortly after Decemeber or more recently?

You really need to stay away from this stuff. It’s posison to a male’s endocrine system. If you feel you can’t handle the hair loss, shave your head or get a transplant.

You mentioned you had your had Testosterone tested. You will need to get a complete blood panel that includes as many hormones and proteins as possible. Total Testosterone does not give you enough information. I had high Total T and Very Low Free T, not too mention all of the other hormones out of wack.

See the list below. It’s a combination of the short list on the main page and a few others that are important to get tested.

You should try to find a very good Endocrinoligist. I think Dr. Chrisler about 4 hours away from where you are.

Total Testosterone
Free Testosterone
Bioavailable Testosterone
Androstenedione
DHT
3alpha-diol G (Androstenediol glucuronide – (“Adiol-G” for short): metabolite of DHT, measures 5AR-II activity
Estradiol (E2)
3alpha-diol G
LH
SHBG
Prolactin
TSH
Vitamin D
Cortisol (24-hour urine sample)
Cortisone
FSH
Reverse T3
Free T3
Free T4
IGF-1
IGF-BP3

You had mentioned you discovered the website in December, I hope you stick around and contribute. The more guys we have here the better. Also, post you blood work on here too after you get it. It will help you and may likely help someone else as well.

#4

Luckfax - I did notice shrinkage before quiting in December. It probably started on and off about two years before I quit. Seemed like a few days it would be fine and then back to smaller - was confusing. After I quit (right after) the shirnkage went away for a month or two but then came back far worse. Now it seems it is always shunken, with little or no feeling.

#5

bostonusa2009
Sorry for the confusion. I quite in December (weaned off as suggested). First two months saw some improvement - and really did not see any further hair loss. The two week quarter pill experiment was the last two weeks of June. Not sure why I did it - I just looked in the mirror one day and saw right down to the scalp in the front and panicked. My whole head was itching/burning like I was about to just lose everything. Nothing had really gotten better with the side effects and I guess I started to think everything could just be cardiovascular instead of the propecia. I think I thought that because the first six/seven years I never really had any issues on the drug other than less ejaculate that if I just took a little everything might be OK?

BTW - one other thing I have noticed. Since January I really have been exercising (running) to both lose weight and perhaps kick everything back into gear. The funny thing is I have only lost a tiny bit of weight but nothing like in the past when I tried to diet/exercise. Could it be low T that is blocking my progress…

Dr. Crisler seems like he would be around 6-7 hours from me. I am really hoping there is someone who can help me locally. Not sure the urologist is going to help but have to find out what the pain is behind my tesicle. Sometimes it is pain; sometimes just tingling sensation.

#6

Welcome. Please participate in this study as it is the #1 thing you can do to advance investigation into our collective problem:

viewtopic.php?f=33&t=3497

#7

I traveled from the northeast to see dr. crisler. 6-7 hour drive is nothing…Go schedule an appointment with him.

DO THE STUDY that MEW LINKED FOR YOU. THIS SHOULD BE A #1 priority for EVERYONE!

#8

Where are you located?

#9

I am located in Pittsburgh Pennsylvania - actually about 15 minutes west of there. Really would like to see about doctors around here first.

Would participate in the study but I am too old (45).

#10

You seem close to Shippen, he is pretty much the man you want to see for this if anyone is able to do anything…

#11

Also, before even testing which I will ask the doctors to do I was wondering what from a diet perspective could help raise testoterone and lower estrogen.

Shippen is located where?

#12

viewtopic.php?f=12&t=486

Go do it…

#13

Any natural diet tips to:

enlarge testicles/increase ejaculate
raise T levels
lower estrogen?

#14

Search for paleo diet… However I don’t think diet will do much, unfortunately

#15

Update - went to cardiologist about the very heart rate; she does not seem terribly concerned. They did a stress test and that came back fine. She is going to test my thyroid - in the past my TSH and T3 are normal; T4 is slightly low - not sure if this is borderline hypo but I will post the results.
Went to the urologist yesterday; he basically blew off everything I said about shrinkage saying the penis and tesicle size will change all day. The problem is mine doesn’t - it is staying small all the time and with a lack of feeling. The pain behind my testicles looks to be a cyst in the epididymis; again he was not concerned too much but will do an ultrasound. Had all the recommended tests and studies and he basically stated he had never heard of any of this and if I really wanted to pursue to see a endocrinologist (although he recommended I just give it some time and the body would heal/go back to normal). He also siad he could write a scrip for a penis pump if I really wanted!?!

I have been off the stuff for six months except my two week stint taking quarter pills - should I give it more time. Is there anything I can do myself without drugs to get the T up and the E down??

#16

Update - some of shrinkage has abated - not back to normal by a long shot but thankfully it is not quite as rubbery small. Head is itching like crazy…

Biggest problem is I still have either pain or tingly feeling behind my left nut - if fact the pain make it also difficult to ever get aroused. When it is tingly I also get the same tingle in my front thigh about six inches above the knee area.

I am hoping the head issue may be some T rising/converting to DHT; still feel I should lower the estrogen level. No blood test yet as no one will order them. Should I give eveything time or go more aggressive in natural/drug treatments.

PS - tried broccoli - no effect but the uro said my protrate was tiny now. Interesting as before I went on propecia I had a inflammed prostrate somtimes.

#17

Truned out that my Estradiol wa off the charts; have been on Tamoxifen at 10 MG. Problem is my testicles are littlerally 1/4 the size of before; my srcotum is so tiny that my old underwear just bags where the sack should be. Always tight to the body.

Is there anything besides HCG to regain testicle size!?!

#18

Scaredtodeath,

Have your doctor check for a Varicocele. This is one of the newer things several of us are looking into. A varicocele can cause shrinkage of the testicles. One of the other symptoms is a dull ache in the teste.

A Varicocele hurts blood flow to the testicles and penis.

#19

HEY - just got my new labs.

Estradiol down to 38 using the tamoxifen vs 56 last time Range 13-54
Testosterone - holding steady at 711 (was 718 last time) Range 250-110
Free Testosterone 87.5 vs 100.5 last time Range (35-155)
% Free Test - 1.2% vs. 1.4% last time Range 1.5-2.2%

SHBG new test - 66!!! Range 9-45

Sense a problem??? No wonder I feel like shit below the waist. Advice on what do I do or ask the urologist for? Looks like my test is OK but is getting gobbled up by SHBG…

#20

You can take Stinging Nettle to lower SHBG, but it also inhibts 5AR. To what extent I do not know. Try to keep lean. Higher fat = higher e2 = higher SHBG.

Double check your Total T range on your lab report. You have it wrong. Its probably more like 300-1200.