New member - had sides for a year now

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?) Google

  3. What is your current age, height, weight? 43, 170 lbs, 5’ 10"

  4. Do you excercise regularly? If so, what type of excercise? 5 days a week, 30 minutes cardio, 20 minutes weights

  5. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)? All of the above. try to stick to organic meat and high veggie diet

  6. Why did you take Finasteride (hair loss, BPH, other)? For thinning of my hair

  7. For how long did you take Finasteride (weeks/months/years)? Aprox. 2 years

  8. How old were you, and WHEN (date) did you start Finasteride? Around 10/2010

  9. How old were you when you quit, and WHEN (date) did you quit? 6/2012

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

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

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

  13. How long into your use of Finasteride did you notice the onset of side effects? maybe started in 3/12. diagnosed with prostatitis (no lab work). ED/libido issues were in full force 7/12

  14. What side effects did you experience while on the drug that have yet to resolve since discontinuation? low libido, erectile dysfunction, low body temp 98.6 went down to 97.5, curvature and rotation of penis to the left, penis stays longer when flaccid and is much thinner, blue veins on either side are very pronounced, was diagnosed with pseudotumor cerebri in october of 2012. opening pressure of 36. repeat lp on diamox was 21. with PTC, i have eye pain/stiffness, constant headaches, tinnitus, severe ear pressure/pain at times, nausea, terrible visual issues (acuity is fine, but have a lot of floaters, “soupy” vision, BEP, grainy, dim vision, after-images, episodes of blurriness)

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
[ X] Watery Ejaculate
[ X] Reduced Ejaculate
[ ] Inability to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

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

Physical
[X ] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[X ] Penis curvature / rotation on axis
[X ] Testicular Pain
[ ] 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
[ ] Prostate pain
[X ] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[X ] Vision - Acuity Decrease / Blurriness
[ ] Increased hair loss
[ ] Frequent urination
[ X] 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? I have not attempted a protocol yet because my biggest issue has been the pseudotumor, which is destroying me. I have been to several urologists and endos and been offered TRT and clomid, but ultimately, Iw as afraid the hormone shifts might exacerbate the PTC.

  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)?

Latest blood test was: note: this test was done in the afternoon
T 222 L (350-1100)
Free T 4.1 L (6.8-22.2)
prolactin 2.8 (2.1-17.7)
PSA 0.29

Past tests taken in the morning have shown my T levels to be right at the 300-350 range, close enough that some docs wouldnt even consider me for replacement.
one test in 06/13:
3A-diol-G 442 ng/dl
DHEA 71.7 L (80-560)
cortisol 16.3 (4.3-22.4)
estradiol 21.9 pg/ml
progesterone 0.8 H (0-0.6)
SHBG 17.7 (13-71)
T 295 (241-827)
ACTH 62.7 (7-63.3)
aldosterone 25.5 (0-30)
androstendione 95 (44-186)
DHT 35 (30-85)
homocysteine 12 (0-15)
methylmalonic acid 233 (73-376)

another test in 11/12:
LH 2.1 mlu/ml
free T3 3.21 pg/ml
anti-TPO 48.4 U/ml
FSH 6.6 mlu/ml
prolactin 5.3 ng/ml
free T4 1.12 ng/dl
cortisol 21.18 ug/dl
T 256 ng/dl
free T 36.1 pg/ml

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

  2. Tell us your story, in your own words, about your Finasteride usage and side effects experienced while on/off the drug.
    From the day I started until early 2012, I had a very healthy libido and absolutely no ED.

Initially, I was not sure that the symptoms were due to Propecia. I was diagnosed with prostatitis early in 2012. I was put on Levaquin for 14 days. The symptoms came back and I was on Levaquin for 14 more days in June. At the end of the 14 day period is when I noticed the complete ED/loss of libido and the physical changes. At the time of intial symptoms, I was on Levaquin, Lipitor, Micardis, and Propecia. When I realized I had absolutely no sex drive, I panicked. That is when I first discovered this website. I kept a careful journal of all symptoms as they happened, so I can answer questions if you have them Details would take too much space.

About ten days later, I started experiencing visual effects, like migraine auras, but without headache, in my right eye only. I also started getting right-sided tinnitus. My doctor was worried about a tumor. MRI was negative. I was referred to an opthalmologist and neuro. Eyes were 20/20, but there was a steady progression of eye symptoms (see above). Neuro tested me for everything, but the only abnormal result was a slightly low T3. I got a second opinion from an endo, who said my Thyroid was fine and did an ultrasound on it. I had two thunderclap headaches one week, which prompted a spinal tap that confirmed pseudotumor cerebri on 10/25/2012. My opening pressure was listed as 32-36 cmH2O. Iw as started on diamox 500mg 2x/day. LP was repeated in January 2013 and showed an OP of 21. I have had multiple MRVs, MRIs, CTs, blood work, etc.If you have a question about testing, just ask. I do not have much pre-Propecia testing, other than the standard cholesterol-type stuff. No Testosterone baseline.

The first few months after my diagnosis were a decent into Hell. I was practically bed ridden with the PTC. I started having headaches, ear pressure/pain, pressure behind my eyes which would cause them to be stiff. Eye movements would cause headaches and nausea. I was constantly fatigued. I slept 18 hours a day if I could. I missed a ton of work and would crash by noon anyway. Some of this was the Diamox, to be sure. But most of the symptoms continue to this day, especially the headaches, eye pain, and ear pressure. But the symptoms are better, and I do go to work daily.

I took Diamox until June of this year, but could no longer stand the side effects. I am currently only taking Micardis, which helps with my headaches, and a Vitamin D supplement. Although I have discussed my sex drive/ed issues with several specialists, I have not yet undertaken a protocol, as I am not sure how to handle hormone issues with the PTC. The pain and disability caused by the PTC are my main concern right now. I am scheduled to go to Johns Hopkins at the end of this month and will discuss this with them then. They are aware of the possible drug interactions. I have done a lot of research and found that the statin, propecia, and levaquin could all be significant players in this. Therefore, I honestly do not know what to attribute to the Propecia, although it seems very odd that a great number of my symptoms match what I have read on this forum. Unfortunately, I also have a number of symptoms that could have been caused by the Levaquin. Specifically, the eye issues are mentioned in relation to both drugs. Really, one of the biggest problems I have is that there are soooo many symptoms that I am labelled a hypochondriac and dismissed by doctors, even though I have documented PTC. I am convinced all of this stuff is interrelated.

I will say that things have improved slightly the last couple of months. I am now getting morning and nocturnal erections. I have been able to get erections with stimulation, but they don’t last. It seems I have a certain pool of hormones. If I use it up with masturbation, I lose the morning wood and nighttime wood. At some point during masturbation, the erection will go away as well. Infact, my penis will “droop” and fold on itself in a perfect 90 degree bend, right in the middle. However, I can still get hard (80% of what I used to) and ejaculate, although the volume and force are very low; and I have a lot of seepage after. Mostly, I now avoid masturbation because I do not have much drive anyway. I have to force myself to activate.

No doubt, the low libido is partially due to constant pain and discomfort, but the physical issues are difficult to explain, as are the shifts in hormones. I welcome any questions and comments you may have. I have left a lot out as there is so much in my history this past year.

#2

Stop taking all pills immediately wait a month or so and then try testosterone boosters either gel for Tablets natural stuff That the bodybuilder Use.

#3

Oh. I did stop taking everything last year. I had to take the diamox to try and lower the pressure. Now i am off of everything. I started hcg monday and took my second injection today. The thing is that the ptc symptoms are brutal. For you guys suffering brain fog and eye pain/headaches, you might want to consider getting an lp. Pseudotumor cerebri has a very strong hormone component. Even the guys i know who were hit by accutane find that their testosterone is low. I think testosterone is protective, and anything that hits the pituitary or testosterone directly could cause your csf pressure to increase.

#4

Bolan,

I also have visual issues. Do black letters on a white background appear to “float” to you? Kinda like a back and forth type motion?

Can you tell me what type of doctor you went to that was able to diagnose you with pseudotumor cerebri.

Also, is there any treatment for this?

Has your vision improved over time?

Thanks,

Matt

#5

Sorry for the delay in response. I have had a rather rough month, but I did find out that my ICP has returned to normal (is now 16). Unfortunately, none of the main symptoms is any better. My vision is still messed up, my T level is still at 337 (with the hcg injections), and I have the eye pressure/stiffness/ear pressure/headaches.

I do not have the visual issue with the black letters floating. Most of my vision problems seem to stem from an almost haze or veil that makes it difficult to focus. Lots of floaters (static, not the type that dart away when you look at them), visual static, and transient blurriness, among others.

The neurologist was the doctor that found the PTC. Basically, the brain fog, headaches, eye stiffness, visual issues, nausea, fatigue, and tinnitus are common with PTC. In males, though, headaches are not usually the presenting symptom; it is usually the visual stuff. My headaches were not bad in the beginning, and I only got bad ones after I was diagnosed. As it turns out, though, almost every male I know that has PTC has low testosterone. None of the others were on Propecia, though.

There is treatment for PTC, but it is off-label and brutal. They put me on Diamox, which was almost as bad as the PTC. It is a vicious little med. I finally could not take it anymore and told my neuro I was titrating myself off of it. I dont think it really helped me much anyway.

I was hoping the visual stuff was more related to the PTC, but so far my vision has not improved much.

#6

PROPECIA RAISES YOUR TESTOSTERONE IN THE BODY ABOUT 20% WHEN YOU GET OFF OF PROPECIA YOUR BODY CRASHES BECAUSE THERE’S NO MORE TESTOSTERONE BEING GIVEN TO THE BODY SO WHAT WE ALL NEED TO DO IS GET ON SOME KIND OF TESTOSTERONE REGIMEN THAT’S NOT TOO HARSH TO THE BODY JUST RAISES IT ABOUT 20% 30% 40% AND WAIT UNTIL OUR BODIES SORTS ITSELF OUT NO TREATMENT NO DOCTOR CAN HELP YOU ALL YOU HAVE TO DO IS RAISE YOUR TESTOSTERONE JUST A TAD BIT AND WAIT UNTIL YOUR BODY SORTS ITSELF OUT.

THAT IS WHAT I’M DOING AND IT’S HELPING ME WHAT I’M TAKING IS HOT PLANTS FOR HIM YOU CAN FIND IT ON EBAY FOR ABOUT $18 FOR ONE MONTH SUPPLY. I TOOK IT FOUR DAYS IN A ROW AND I’M RESTING FOR ABOUT TWO DAYS AND I FEEL FINE I FEEL LIKE MY BRAIN FOG EVERYTHING GOES AWAY WHEN I TAKE THIS PILL BECAUSE IT RAISES THE TESTOSTERONE IN MY BODY SLIGHTLY AND I FEEL GOOD.

AND STOP BEING A GUINEA PIG FOR THESE FUCKING DOCTORS THEY DON’T KNOW SHIT ALL THEY KNOW HOW TO DO IS WRITE A SLOPPY PRESCRIPTION AND SEND YOU TO THE THE DRUGSTORE
IN ABOUT A WEEK OR TWO YOU GO BACK TO VISIT HEM THIS THING DIDN’T WORK WELL I’M SORRY LET ME PUT YOU ON THIS ONE. MEANWHILE YOU’RE MAKING A CONDITION WORSE RAISING YOUR TESTOSTERONE IS GOING TO FIX ALL THE CONDITIONS THAT YOU HAVE IN YOUR BODY GUARANTEED BECAUSE THAT IS WHAT’S LACKING IN YOUR BODY AND THAT’S WHY YOU HAVE THESE FUCKING ISSUES. GET A BOTTLE AND TRY IT I GUARANTEE YOU IT’S GOING TO FIX YOU JUST ENOUGH SO YOU CAN FUNCTION UNTIL YOUR BODY JUST SORT ITSELF OUT.

#7

Hmmm. So is the PTC resolved then with the ICP being down???

Maybe the visual sides will gradually decrease. I hope so, cause that would give me hope.

Keep us updated.

Thanks,

Matt

#8

ncbi.nlm.nih.gov/pmc/articles/PMC2815168/

Conclusions
Men with IIH are more likely than controls to have symptoms associated with testosterone deficiency and OSA. These associations suggest a possible role for sex hormones and OSA in the pathogenesis of IIH in men.

#9

I know it’s been awhile, but any updates Bolan?

#10

Any updates from the group in this thread?