My story after +- 20years of propecia use

[zodiacs]

0. Where are you from (country)?
   Europe,Luxembourg

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, searching for help about my symptoms

2. What is your current age, height, weight?
   40y, 178cm, 77,5 kg (before stopping propecia 87kg)

3. Do you excercise regularly? If so, what type of excercise?
   no

4. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)?
   Mixed, now avoiding sugar, particular fruit sugar (fructose) because of intolerance diagnose recently

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

6. For how long did you take Finasteride (weeks/months/years)?
   ± 20 years…!!

7. How old were you, and WHEN (date) did you start Finasteride?
   Around 20y

8. How old were you when you quit, and WHEN (date) did you quit?
   39years, august 2017

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

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.)?
    1mg/day, the last 5years 1 pill every 2-3 days

12. How long into your use of Finasteride did you notice the onset of side effects?
    Never, got sides after stopping midd-end 2017

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
[ ] Erectile Dysfunction
[ ] Complete Impotence
[x] Loss of Morning Erections
[x] Loss of Spontaneous Erections
[x] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[ ] Reduced Ejaculate
[ ] Inability to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

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

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

Misc
[ ] Prostate pain
[x] 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)

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

15. 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)?

Blood prolactine above limit but doctor said still ok…
from a salvia hormone test the results were all in range but there is an estrogen dominance in the estrogen-progesteron ratio

link to complete test will follow here

16. Anything not listed in the above questions you’d like to share about your experience with Finasteride?
    Never noticed side effects while taking Propecia for ± 20y, after stopping problems came and still come

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

I took Propecia for ± 20 years, I didn’t even remember when I started exactly. I never noticed any side effects.

In August-September 2017 I stopped taking Propecia because I thought that now with nearly 40y I can lose my hair without having problems with it and the money would be better invested in something else then my hair… In mid-September I suddenly felt no hunger anymore and lost 5kg in 2 weeks, had to force myself to eat something. I had problems with digestion, it seemed that I suddenly had problems with some foods. I had diarrhea, but only short periods but regularly. I went to the doctor I got checked my stomach and intestine without results, everything seemed ok. Also blood results where ok. At this moment I did not make any relation between my problems and stopping propecia.

In October (± 1 month of) I noticed that I had no more libido at all, erections still where ok but I had to stimulate to get them. To the libido problems came brain fog, muscle pain, depression and severe anxiety. My doctor send me to an urologist for the libido problem. This one asked me if I took or have taken any medicine, that’s where I remembered my Propecia stop and I told him. He immediately changed his face an told me that he would never take himself or prescribe Propecia to anyone for hair treatment, because it changes hormones and people can get very strange sides from it. He told me that man can even have breasts like women by taking it. He told me that everything would be fine, but that this can take a long time for the body to get normal status. He checked some hormone levels, testosterone and SHBG in range but low, dhea-s in range high end only prolactine a little bit over the range. This was in December, I was told to wait another 6 months and check the values again.

Now ± 6 month of Propecia and after reading a lot of posts here and on other forums I decided to write down my story to. In this 6 month I visited more doctors than in my whole life before this mess, often without any results. The only result I got was that I have a fructose malabsorption diagnosed by an H2 breath test. Before stopping Propecia, I never had problems with any food… So I am avoiding fruit sugar now and it seemed to help with my digestion problems. During the last 6 months I had very bad days, bad days, good days and very good days. I hoped that this was the normal recovery process that was well reported by some users. I even went on ski holidays in February and it was ok, had only 2 evenings with head problems but was tolerable. But I have to say that after this holiday I have the feeling that things went worse….The good days are becoming less and now I have a nearly every day vertigo that is not going away and extreme anxiety symptoms that are very difficult to handle. I have to say that I do not have this terrible pain reported by other users but the mental things are making life very difficult. Only my wife and my two boys are giving me the energy to not lose hope.

I am trying different herbs and vitamins right now and try to avoid sugar for the best but the results are not very hopeful.

So in short what changed in the last 6 month for me :

• Libido is at about 50%, but I think that my libido while on propecia was abnormal high I even often had the feeling that I was sex addicted…so libido at 50%is not a problem now for me now.
• Morning and spontaneous erections have come back for some times, bur seem to be not as hard as before, can live with this to
• My penis even often seems to be longer now in soft condition, even my wife noticed this, so I think I had shrinkage while on fin before that now gets better from time to time.
• Depression and motivation is better but the recent problems make it difficult to handle.
• Unfortunately I now have often noticeable heart palpitations, some light but often present vertigo feeling, head pressure with light head and neck pain. My digestion seems to get worse, after eating something I now have often stomach pain and I am constantly losing weight. I eat normal quantities but it seems like my body needs more now, like the body is running on 150% all the time… Anxiety has become worse the last 2 weeks, I have problems to stay at the office and speak to people, it gives me more vertigo feelings and brain fog. Feeling some sort of nervous condition in my body the whole time and when I met or speak to people it gets worse and worse.

So, that is my story. Before I hoped for recovery with the ups and downs, but now I am a little bit loosing hope and fear that mental things even get worse. I am fearing serious brain damage from this drug now. I hope for some advices, how to handle this symptoms or are this changings in a 6 month period “normal” for our problem and I have to give it more time?

Thank you very much for your attention.

[Jay]

Hi Zodiac,

Do you have a cure to restore your body ? Have you seen a good scientist ?
Jay

[zodiacs]

Hi Jay,

I can tell you that i am doing better then 2 month ago. I realy think that i am on a good way out of this mess, but still have a long way too go.
I have seen a lot doctors, but they all tell me everything looks fine… Only an Urulogist told me that this might come form propecia stop and i have to wait 6 month to let my body regulate hormones bach to normal.
I took 25mg of zink every night before going to bed 2 month ago and i think it helped me to get better sleep, better dreams and morning eractions back. But i can not say for sure if it was the zink or only time that made me feel better. I am also doing better since i take care of what i am eating, very low suger, no fruit suger, nearly no milk and no alcohol. I think for me the key is time and a healthy lifestile.
Unfortunately the last 2 weeks i am dealing with headaches very often and have again more days where i am feeling very tired. I still have a very low stress resistance, anxiety problems and the thing that scarys me most are my heart arithmies that are very frequent last days. I want do do sports, but every little effort gives me more heart arithmies and makes me feel horrible the next 3 hours.
So overal i think i am improuving but far from being cured.

[zodiacs]

hormonal blood test from 22/12/2017:

Prolactine : 20.1 ng/mL (range 3.5-19.4)
Total Testosterone : 4.78 ng/mL (range 1.68-9.54)
SHBG : 28.2 nmol/L (range 13.5-71.0)
Free Testo calculated : 0.11 ng/mL (range 0.03-0.20)
Bio Testo calculated : 2.55 ng/mL (range 0.76-4.69)
DHEA-S : 407 ug/dL (range 140-484)

So i had another blood test yesterday from my house doctor to check my cholesterol values, i asked her if we could retest hormones i got tested in december because the urologist told me to retest in 6 months. Unfortunately my house doctor doesn’t recognise pfs and told me my problems do not come from propecia and that nothing is proven on this…(she is the one who has prescribed me propecia over ±20years…)
I could convince her at least to test prolactine again, because of the higher value of december test. Here is the result :

Prolactine : 5.6 ng/mL (range 3.5-19.4)

So ±10 months after stopping propecia my prolactine level seems to be restored again. So because i got better over the last months i think my body is on the right track. Unfortunately the stress level and head pressure are still a problem for me, often have problems concentraiting at work, have the impression my thoughts got slower over the last weeks… At least the last 3 weeks my heart arithmies/palpitations got a lot better, i rarely now feel them and even often forget i have them.

So after 10 months i can say that se sexual problems are all ok now to live with, only the mental ones are still hitting me sometimes more sometimes less. Hope time will help me also with this.

Wish you all a good day.

[bruschi11]

Zodiac’s you don’t have brain damage from the actual drug, you have issues in your body now that this drug caused. The issues in the body are now allowing toxicities, pathogens, and whatever environmental factors which could cause issue to do indeed that- cause issue.

So in essense, your whole system including brain is being damaged no doubt about that with these environmental factors harming you. But its due to something internally that finasteride changed in your system most relevantly your overall detoxification system is injured.

[zodiacs]

So you think i have to help my body with detoxification to improve my symptoms?

[zodiacs]

Time for an update.

I am now good 11 months of the drug and about 10 months after my crash.

I can say that sexual sides are not a problem for me anymore. Libido is back to 80-90%, morning erections are there nearly every morning. I have to say that my sexual symptoms where never very dramatic, only the first 2-3 months my libido was near 0%. Frequent urination is completely gone, sperm volume is increased. So no problems in this area anymore for me.

Physical symtoms are also good. My hair is still there and seems to not fell out more than the 20 years on the drug. I went form 88kg down to 76kg in 5-6 months. Now i am stabelized at around 80kg since 3 months, this is perfect for me, no problems in loosing wheight anymore.

What still remains are the mental problems. While everything seems better than the first 2-3 months, i still have days where i think that my brain is degenerating. I have days of very good mood and where i am very clear in the head, but often also bad days with no energy, extreme fatigue back and problems in concentraiting and pression in my head and neck pain/stifness. Also very low stress resistance and anxiety is still present very often. My heart arithmies improved and are only noticable on very bad days. Sleep is ok and i have very intense dreams back since a few months now. Digestion is some days good and some days bad, but overal much better then in the beginning of this mess.

I had an appointment with a doctor who is spezialized in nutrition, because i had the feeling that my mental problems where more present when i also had gut problems. He took me a lot of blood and wanted to check some extra things, unfortunately i only got the next appointment in august, so i have to wait for the results. The good thing is that this is the first doctor who believed me that my problems started after stopping propecia. He told ma that the stopping of the drug stressed my body by making an imbalence in hormones which then had an impact on my gut. Because my sexual problems returned to nearly normal he told me that now we need to fix the gut. He prescribed me some probiotics to restore the gut bacterias and told me for the rest we will see in august when wee see us next and he has the blood results.

So overal i improved but my mental problems are worring me a lot. I have some days where i think that they even got worse, but on good days i think i am on e very good track to heal. I think you all know this sort of thinking…

So if anyone has a good advice for the mental problems, i would apreciate to read about it. I often read in other threads that the mental problems will go away with time, but also read storys where they got worse. What is your experience?

Thx a good day to all of you z.

P.s. : On another thread i mentioned that my urulogist told me that with my 40y i had a prostate volume of a boy around 18y. I found the data in his report, the volume is 23gr for those who have asked me.

[mattias]

I also think the severity of my mental problems is related to my gut, specifically digestion. But overall my symptoms have drastically gotten better in the past 9 months. One thing that suprisingly alleviates my mental problems is olive oil. And like many others I also feel better when I water fast.

[zodiacs]

Hi mattias,

Thx for your comment. Will give olive oil a try, and fasting is something i had in my mind to.

[noprop]

It would be very helpful to post your bloodwork here. Or at least to list the blood elements. Very interesting! THX!

[zodiacs]

I got the results today, 17 pages of results and diagrams…
I will post fotos in here later, it s in French but i think most terms are the same or nearly the same in english. My gut seems to have some problems with some food now, never had problems 11 months ago before my crash. But also ohter results seem not good…

I will post the results but can give no explanations until i saw the doctor again in august.

[zodiacs]

I tried to upload the pictures,but they are putted in the topic in a very strange order. Perhaps it’s because i am trying it from my phone. Will give it another try tomorrow from the pc.

[zodiacs]

[zodiacs]

When i see my adrenaline values, i think it’s normal that i feel stressed very often and the low stress resistance… It can also explain my head pressure and even the digestive issues can be the cause of high adrenaline.
I hope that the doctor can give me more explanations of my situation in august and that we can find the cause of the high adrenaline value.

[zodiacs]

I also have low copper in blood. This and the adrenaline could explain a lot of my symtoms. Did someone else had low copper?
Anyone been tested or looked into morbus wilson?

[kon93]

its weird after getting pfs i went from anxious 24/7 to the most non caring person in the world, my adrenaline came back very low

[zodiacs]

Hi guys, time for an update.

As mentioned in my posts before, i was doing good except for the stress/anxiety problems.
A week ago i had more had pressure again, for 2-3 days. Then on tuesday morning i suddenly felt extrem nausea coming from out of nowhere, i had to vomit and the rest of the day i had very fluid watery like diarrhea.
I felt realy very very bad, the stress/anxiety was over the roof. Had no control over my head…my body and mental situation was very bad again. Two days i tryied to relax and calm my gut, by eating very carfuly. Thankfully on friday things went slowly better, still feel some nausea in the mornings but ovrall it’s a lot better. Stress/anxiety is better but still very high, over the weekend i could calm my body even more down and can eat nearly normal again.
So a very hard and heavy step back but could recover from this in a few days which i find is a good sign.
I saw my nutrician doctor today and told him everything. He told me this is because i dont stop to eat things my gut can’t handle at the moment. He put me now on a very strict diet and gave me a bunch of supplements to fix the things my blood test showed up. This will take a good month before i will see improvments he told me and i have to follow this for 4 months. So now i am on a protocol from a doctor for the next 4 months, then he will make a blood test again to check the diffrences.
I will put regular updates in here for you to follow this. If it helps me i will give more details over the different supplements he prescribed me for the different problems. For me it dosen’t make sense to tell you things now that could perhaps have no effect, i want to be sure that something changed for me.

Wish you all a good week.

[zodiacs]

What i want do add to my post is that the main things that i have to avoid due to my above blood results are gluten, dairy products and egg. The doc put me on a strict diet.

I find it very strange that i read a lot of posts from people telling they felt better after avoiding gluten an dairy and now i have the same diagnose from a blood test and i often mentioned the relation between my mental problems and my gut problems. I just can’t understand why we are not finding the common main issue from this mess while a lot of people seem to feel the same. There must be one doc who has the right understanding of this.

[zodiacs]

Time for an update.

The stress/anxiety is still a big problem for me. I often think that it’s even getting worse. Lasea helps me in some way, but unfortunaltely i think that the stess/anxiety is worse when i stop taking it for 1-2 days.
The last days vertigo is more present and heart arrhyitmies also. I am still on the diet but have to avoid that i am not so consequent then the first 3 months. I think that if it’s not helping enough, then i could at least eat a little bit more waht i want…

Don’t know what to do next, think i simply have to live with this. I am tired in repeating my story to new doctors and feel more and more bad when seeing them. Next week i have an apointment with an psychiatrist. One doc told me that he thinks that i am in a burnout… I’ll give it a try, nothing to lose anyway.

A good day to all of you.
Z.

[Brazil01]

Please, don’t give Up! Good luck!