My story and thoughts

Member Stories
#1

Welcome to our community. Please fill in the following template as a way of introducing yourself, and helping others to understand your background and situation.

Where are you from (country)? Tukey

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?) reddit

What is your current age, height, weight? 21, 180, 75

What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)?

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

What condition was being treated with the drug?

For how long did you take the drug (weeks/months/years)?

Date when you started the drug? 15.01.2021

Date when you quit the drug? 23.07.2021

Age when you quit? 21

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

How long into your usage did you notice the onset of side effects?
3 months

What side effects did you experience that have yet to resolve since discontinuation?
Visual libido (no)

Check the boxes that apply. You can save your post first, then interactively check/uncheck the boxes by clicking on them. If your symptoms change, please update your list.

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

Mental
[+] Emotional Blunting / Emotionally Flat
[+] Difficulty Focusing / Concentrating
[+] Confusion
[ ] Memory Loss / Forgetfulness
[+] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[+] 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
[+] Genital numbness / sensitivity decrease
[ ] Weight Gain
[ ] Gynecomastia (male breasts)
[ ] Muscle Wastage
[ ] Muscle Weakness
[ ] Joint Pain
[ ] Dry / Dark Circles under eyes

Misc
[+] Prostate pain
[ ] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[+] Vision - Acuity Decrease / Blurriness
[ ] Tinnitus (ringing or high pitched sound in ears)
[ ] Hearing loss
[ ] Increased hair loss
[ ] Frequent urination
[+] Lowered body temperature

[+] Other (please explain)—> lymph node enlargement

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?

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

After quitting, progesterone was high, returned to normal after three months, all my tests were normal.

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

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

first of all, hello everyone, I’m not very well right now, but I need to look positive because I’m alive and I have no other choice :slight_smile:
I can be one of the most loved people at school throughout my high school and college life the men in the family have no sexual or chronic diseases and my grandfather is approaching 100.

I was a very affectionate talkative extrovert. I’ve always been good with girls.
Physically, I’m a handsome person like all of you :wink: and I’ve also done professional sports in many fields throughout my life, swimming, running, football etc. I was a person who thought about sex every second, even when I was talking to my girlfriend, I remember that my penis was always active and turned on for hours. I wouldn’t care about the world for sex.

That’s why I’m saying this because I thought people here were crazy I’ve been on this forum for about 7 months and I thought that the people here were people who already had unhealthy psychiatric problems and attributed it to medication. But I’m sure you were perfectly healthy people before a drug.

My hair loss started when I was about 18 years old, it wasn’t very argasive at first, but when I turned 20, I had excessive hair loss, maybe I was losing 200 strands of hair when I took a shower.

Later, in my university exam year, I couldn’t take care of myself much, so my hair loss increased a lot and I worked hard and got into medical school in one of the best schools in the country. A valid education is given in all European countries.

everything was great but my hair was in terrible condition my hair loss was continuing very fast and I panicked I ordered many pills biotin zinc etc. I also used all kinds of oils on my hair, used the most expensive shampoos, bought a lot of hair serum and checked my hair for hours every day to see if there was any improvement. the result is disappointment. My hair loss never stopped, I even remember standing up and standing for 5 minutes every day to get blood in my hair.

Then I started to read articles about hair loss. Then I researched drugs that would inhibit dht and found dutesteride. I remember the day I took the first pill, I was cold. When I researched why, I saw that dht was responsible for blood cell production in the bone marrow and I ignored it. I had absolute trust in drugs and medicine :slight_smile:

Then I pierced the capsule to reduce the dose of dutasteride, I dripped a few drops and put it in bread and swallowed it. The hearesteride was not in solid form and should not touch the esophagus.

I then switched to finasteride as it is easier to split and swallow. At first, I used the pill by dividing it by 5, then I continued by dividing it by 4. I remember the day I took the first pill, and suddenly that shedding and itching feeling in my head was cut like a knife, and it was like magic. I had found a solution to this shedding problem that I had been dealing with for years and couldn’t find any way, and I felt very lucky that I would not stay bald.

then I was really sure that my hair loss was genetic rather than nutrition and care. In the first month, a lot of small hair came out and my hair got thicker. After about 3 months, I regained my 18-year-old hair.

after about 3 months, my libido suddenly disappeared, there was nothing, i didn’t think about any woman in my brain, i wasn’t fantasizing. There were a lot of hot girls at my university, but the old me who went crazy when I saw part of a beautiful girl’s leg was gone. I forced myself to look I didn’t feel anything like I was looking at my mom or a man.

Then I accepted the side effect of the drug and said that I would use it for a few years and then quit. At least I would have hair in college. Later, about June, I met with my best friend to go to the sea, and my feelings were not there. normally when I met my friends I felt extremely happy I loved to talk and laugh but there was no emotion and I said to myself how can this be, I remember saying to myself, am I getting schizophrenic?

Then I stopped taking the drug and on the first day after quitting, my penis sensitivity came and I had an erection a couple of times during the day. After a few weeks, my libido collapsed, I thought it was normal and would pass, but months passed and it did not improve. I went to the university hospital in my school, had blood tests done, talked to my specialist friends and talked to the teachers about this issue for a long time. One of my professors had hundreds of patients with this syndrome and said that it was androgen receptor insensitivity, I didn’t know about receptors at that time. When I asked him how it was, he said that unlike other hormones, sex hormones increase a lot in a certain period of life and start puberty. the result was an increase in body hair and the acquisition of male behavioral characteristics.

Self-reporting template - ONLY USE FOR FUTURE POSTS TO REPORT ANY TRIALS OF TREATMENTS, NOT YOUR INITIAL MEMBER STORY

  1. Name of the therapy/substance:
    • Dosage:
    • How often you took it:
  2. Status
    • Still using [ ]
    • Stopped with no lasting change to initial symptoms [ ]
    • Stopped with persistent change to symptoms [ ]
  3. Duration of use: Days [ ] Months [ ] Years [ ]
  4. Response when you started:
    • Greatly improved [ ]
    • Slightly improved [ ]
    • Stayed the same [ ]
    • Slightly worsened [ ]
    • Greatly worsened [ ]
  5. Current response (if you’re still using the therapy/substance) OR Response in the time before you stopped the treatment
    • Greatly improved [ ]
    • Slightly improved [ ]
    • Stayed the same [ ]
    • Slightly worsened [ ]
    • Greatly worsened [ ]
  6. Lasting changes to initial symptoms after cessation (if you have stopped for more than 3 weeks)
    • Greatly improved [ ]
    • Slightly improved [ ]
    • Stayed the same [ ]
    • Slightly worsened [ ]
    • Greatly worsened [ ]
4 Likes
#2

by the way, the supplements I use are tribulus, ginko, magnesium, l-carnitin, dim, vitamin d. basically, if you give these to a baby, his libido will not come, and we have a similar situation.

#3

“I had absolute trust in drugs and medicine”.

I did so too. Even after I read of cases of long lasting ED at the Citalopram leaflet. I believed the criminal leaflet of Finasterid. Without further checks.

There only mentioning ED can hold on after quitting. Nothing said of long lasting side effects, persistent for years.

And in the internet so much gaslighting missinformation. On the other hand clear warnings. But I ideot didn’t check it. Not for 10 second.

For you I hope time is on your side. Maybe your symptoms become better with time. There are some true stories of members with a good recovery, no fakes.

And many, many members here arrange with their new lives or fight daily for every little recovery. Younger ones much more often feel much better after some years.

Only we elder ones are totally frustrated, because we cannot adjust to our new life anymore.

Or research projects going to have a lucky punch and PFS is only one alteration in the epigenetic regulation only one key gen (region) coding for all, only one genetic marker and not a complex mechanism. (My thoughts as an armchair scientist, based on the actual state of research released here, but I studied microbiology once).

Your professor said he has hundreds of cases with decreased response to adrenals. It would be interesting how many of them PFS cases. Because I think we here on propecia help only representing 10 % of all PFS cases in Europe and North America and only 1 % in China, India and other countries with a language barrier. Here are 20 - 50 German cases registered. The PFS specialists talk about hunderts.

1 Like
#4

I don’t believe there are so few people in Germany. I was a very healthy man and I think it affects up to 80 percent of people. I don’t understand how it is said that only one percent is impossible, I think it’s impossible.

1 Like
#5

I’m sorry you’ve also fallen into this trap. It seems you have a good attitude which will be important in this fight. I wish you all the best and feel free to reach out.

3 Likes
#6

I can relate to some of your symptoms man. I hope that with time you can improve. And like @Erik says don’t hesitate to reach out to other patients!

1 Like
#7

At the end of the article, it is mentioned that there is a group with normal 5 alpha reductase and androgen receptors, possibly referring to a disruption in signal transmission. In my opinion, finasteride creates an acquired androgen resistance. In partial androgen insensitivity syndromes, although the hormone levels are normal, even though the hormone binds to the receptor as it should, it cannot generate the necessary stimulus in the cell, the cell does not react to it. There are two types of diseases in general, the first is genetic, the second is environmental, the second is acquired, for example type1. and type 2 diabetes. Of course, we are not intersex by birth, but we have androgen resistance just like them. There are much more comprehensive studies in this area. I think we should research them.

1 Like
#8

Androgen resistance and androgen insensitivity syndromes are different diseases. In androgen resistance, the hormone enzyme and receptor are normal, but the cell does not respond. Secondly, in androgen insensitivity syndromes, the receptor is probably defective and even if the hormone binds, the receptor does not function. The drugs used in these diseases are quite cytotoxic and distressing drugs.

Let’s keep looking, I think we can find a way :slight_smile:

1 Like
#9

I’m so sorry to read you’re experiencing these problems. Like @Erik has said, it is good that you seem to have a positive attitude to what everyone here knows is a horrible situation to find yourself in.

This, broadly speaking, is a hypothesis which has been proposed on the forum for a long time. The good news is that the PFS Network have found the scientists with the relevant expertise to investigate this approach and they are interested in devoting some of their precious time to our condition. If we support these experts with the time and funding that they need, then there is some hope for us all to find a way out of this mess in the future. As others have mentioned, don’t hesitate to reach out. We all need to stick together if we’re to find our way out of this situation. :slightly_smiling_face:

2 Likes
#10

What drugs? The only thing I found about it is that one causes the other and doesn’t appear to be a condition that’s treated.

#11

I attended the council today with my teachers. There are some children who enter puberty late. They discussed their treatment plans. There were professors from pediatric endocrinology and urology. I disclosed my own illness and some already knew that I had it. they listened to me and said that they can also have androgen resistance in children who entered late puberty. They said they could try this. I need to sign certain signatures and it will be a treatment for about 6 months or even a year. I will post the progress.

1 Like
#12

Try what?

#13

Did they tell you how androgen resistance could be tested before getting a treatment? Maybe some additional signs in the organism? Any ways to check the hypothesis?
I guess, the treatment must include some very potent drugs and could have some possible adverse effects.

1 Like
#14

doctors suspected a hypogonadism in me, but my hormone tests were always within the normal range. some psychological tests were done and it was checked whether I had any trauma-induced sexual dysfunction. They eliminated this possibility as well, even the psychiatrist I went to said that he believed in me a lot, and he was absolutely sure that these changes in my brain and body were not in my head. some possibilities remain: loss of libido due to prostate atrophy, 5 alpha reductase deficiency androgen resistance, or an acquired androgen insensitivity syndrome.

Some stimulation tests were done. because dht measurement makes no sense without stimulation tests. dht release is also normal, so my 5 alpha reductase levels are normal. The only remaining possibility is that the cell is not responding to androgens or that the androgen receptor is not working. For this, they will initiate a virtual adolescence.

I will not tell the names of the drugs and the treatment protocol here, but dht and testosterone preparations are not used, some non-aromatized anabolic synthetic substances are used. And that’s very, very risky. I need to put certain signatures. The treatment will not be an aggressive treatment. I will be constantly followed. I hope it helps.

1 Like
#15

actually some of the signs i saw in myself were very thinning of body hair. My hair is still bushy and there is not much shedding. loss of libido penile tissue was normal up to 6 months after stopping the drug but now appears to have thinned or the tissue has changed.

maybe this is actually a good thing because hair follicles in the body are very small. And that actually shows that the root cause is at the cellular level, if we can get the cells to respond again, everything will be fine. so we need to understand cells.

#16

I was considering androgen insensitivity too. But there’re too many signs of androgens affecting my body like muscle development, return of acne and hair loss. My hormone tests were in the normal range too. And the endocrinologist said she could tell at the first sight that I didn’t have hyponogonadism.
Despite all of that I still have persisting symptoms, typical for PFS.
Could it be some partial insensitivity? I don’t have a clue.

I hope your doctors know what they’re doing. And I do hope you’ll find some helping treatment. Let’s keep our fingers crossed.

1 Like
#17

How long ago did you experience hair loss?
The working principle of androgen receptors is not actually working or not working. Our bodies don’t work on a yes or no response most of the time. There is a spectrum that we can call healthy, normal and unhealthy abnormal.

When I searched the literature, I searched maybe hundreds of books. İt says that the androgen receptor will give certain signals to the cell incorrectly, in fact, it seems like it gives a pear signal instead of an apple signal, that is, apples and pears have similarities in shape and taste, but if we take the apple as normal, the pear will be wrong. This may actually explain your hair loss but your lack of libido and other symptoms (emotional breakdown, loss of reward sense, genital anhedonia).

#18

I’m curious, could you explain these tests a bit more? Were they serum blood tests? My understanding is that DHT is made within the tissue it’s then used in, so measuring the tissue hormone level is difficult.

Man, this sounds like it could be quite dangerous… Remember that no Doctor fully understands what PFS is yet. Obviously it is your choice, but I don’t think it’s a good idea to rush into doing anything too crazy to try and treat this after less than a year of problems.

3 Likes
#19

DHT is measured after hcg injection. It is used in the diagnosis of male pseudohermaphrosis. hcg actually mimics lh.
DHT has a very short half-life, so direct blood measurements are wrong.

#20

I really think you should wait longer before you do anything.