I "cured" myself of PFS

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)?
Italy

How did you find this forum? Google

What is your current age, height, weight?
30/181cm/65kg

What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)?
Finasteride
What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
1mg a day
What condition was being treated with the drug?
Hair loss
For how long did you take the drug (weeks/months/years)?
10 months
How old were you, and WHEN (date) did you start the drug?
Don’t remember precisely…but it was in my early 20’s
How old were you when you quit, and WHEN (date) did you quit?
10 months later
How did you quit (cold turkey or taper off)?
Cold turkey
How long into your usage did you notice the onset of side effects?
Pretty soon, after a week and gradually got worse. They also got worse after I stopped
What side effects did you experience that have yet to resolve since discontinuation?
I’m symptom free now
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 [x]
Complete Impotence
Loss of Morning Erections [x]
Loss of Spontaneous Erections
Loss of Nocturnal Erections [x]
Watery Ejaculate [x]
Reduced Ejaculate
Inability or Difficulty to Ejaculate / Orgasm
Reduced Sperm Count / Motility

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

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

Misc
Prostate pain
Persistent Fatigue / Exhaustion[x]
Stomach Pains / Digestion Problems[x]
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 [x]

Other (please explain)

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
The one that worked is a mostly diet approach
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)?

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 drug.

Hello, I’m writing this post trying to spread awareness about what causes finasteride side effects and how I finally cured myself after almost a decade of being almost disabled with terrible brain fog, fatigue, chronic migraines, difficulty swallowing food, GERD, joint pain, testicular pain (chronic epididymitis), skin issue, peripheral neuropathy (tingling and burning sensation in feet and hand), dizziness and more.
I start by saying: finding the root cause of my problem wasn’t easy at all. Initially I thought my problem was hormonal since finasteride changed my hormones and tried to take some steroids to reverse the damage, of course I got no relief of my symptoms. Then I started to supplement all kind of vitamins/minerals such as vitamin D, B vitamins, Omega 3, magnesium, zinc, natural herbs, curcumin, candida killers substances ecc…the list is endless and I got pretty much no relief. Going to the gym, psychotherapy, change in attitude also didn’t change my symptoms. I was depressed, without a job (could barely understand what I read) and it seems like every year I got a new weird symptom. I felt like dying.
After this period of trying all those things I researched and read a lot about my symptoms and realized my problems were common (at least in part) in people with other autoimmune diseases such as fibromyalgia, multiple sclerosis, mast cell activation syndrome, people with chronic virus, hashimoto thyroiditis and many other autoimmune diseases. I also read many books about autoimmune diseases and everybody seemed to agree it’s tough to diagnose them because they are silent (silent chronic inflammation) and there aren’t many tests to diagnose them aside from some where you can see the antibodies.
All the books and doctors seemed to agree that to cure autoimmune issue the most important thing was a change in diet. Inflammatory foods such as gluten, grains, dairy, sugar and junk food in general must be avoided strictly, light exercise is advised and stress reduction is also important. Some supplement such as curcumin (anti inflammatory helps).
I tried a very restrictive diet (AIP diet) and my symptoms for the first time improved. After 4-5 months I was symptom free except for the cognitive problem (brain fog) that was still there although improved by at least 50%. So I researched more about it and found out cognitive problems are the last to improve because neuroinflammation in the brain is slow to decrease and the damage sometimes can’t be reversed if it’s left untreated for a lot of time. I also had a gluten sensitivity test and despite the finding I’m not celiac (I have negative antibodies to alpha gliadin and negative endoscopy) I do have antibodies against TG6…it means my immune system is attacking my neural tissue everytime I eat gluten. This was a very scary finding for me and considering the many people who got better in diets that strictly eliminated gluten I believe this is something that is true for many people who experience brain fog. Unfortunately if there is too much damage in the brain it can’t be reserved but if caught early it’s reversible as long as you follow a very strict gluten free diet without ever cheating. Nowadays my brain fog is 90% gone and that was my main problem. The difference is my processing speed, verbal fluency, concentration is amazing and if I do re-eat gluten (small amounts) my symptoms come back even strongly that before. I believe it’s a huge trigger for every single one of us that suffer from PMS. CDnuts in his protocol said he strictly avoided gluten and probably he did that unconsciously but I believe that’s the main reason for his recovery. Carnivore diet is especially good for PMS but it’s very restrictive, these days I eat a gluten free (and soy free diet) and I’m still pretty much symptom free.
My autoimmune disease triggered by PFS is under control.
PFS also caused me some problem with my thyroid, I have some hypothyroidism (TSH around 2,5…was 3,5 some months ago) but this only caused the cold extremities and cold sensation. Basically I risked to develop Hashimoto’s disease but I guess by changing my lifestyle I avoided the disease (TSH is now decreasing steadily and T3 and T4 are in optimal range).

I know it’s tough to believe PFS is an autoimmune issue but personally I have no doubt anymore, and my doctor (a functional doctor think the same). Autoimmune issues are often triggered by a chronic infection, change in hormones, or stress and are way more common in women. And women have more estrogens than men. Finasteride convert part of the testosterone in estrogens and that may be the trigger for our autoimmune issues (other than having a genetic predisposition). And talking about genetics, I analyzed my genome and I have many genes that carry risks about autoimmune issues. Actually autoimmune diseases are the highest risk factor in my genome! With such predisposition it just take a minimum environmental trigger (in this case finasteride) to get the disease.

Autoimmune diseases can’t be cured, but with a (restrictive diet) you can live completely symptom free. I was disabled and bedridden at my worst, now I feel normal as I felt 10 years ago. Of course eating a restrictive diet has its own problem, my social life isn’t the same because of it but compared to having PFS I feel extremely lucky.

I seriously advice you to try it

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Good job, and I’m thinking same pfs is autoimmune!

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Did you ever test your IgE?

Jesus christ, what is going on with this recovery threads? It is so good to see if these are totally real. Which i believe it is.

So i wonder, what will happen if you stop the diet now. Will your symptoms appear again?
Can you also talk about your sexual improvements a little bit more? Thanks and congrats!

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There is definitely something to this. I think a lot of us have food allergies we aren’t even aware of. I tested myself and tested positive for eggs and gluten sensitivities. I passed the soy test and the dairy test but soy and dairy still give me a lot of problems despite what the tests say.

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Check your IgE…

Great to hear man! It helped your sexual sides too?

I eat carnivore and still have brain fog…

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Well a gamsa needed

Yes… i fink so

Sorry Dude…No genital Numbness no PFS for you…You had something else, and you cured it…Sorry for being rude, but i cant take these recovery threads anymore.

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Agreed. He had PFS for 10 years and waited till now for his first post to state he is cured. Not buying it.

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Congratulations on your determination and success. Going on strict diets is something few are willing to do, favoring staying on the miscellaneous pill hamster wheel for year on end. Thank you for sharing experience. Very valuable for us to have.

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Fasting was not necessary for you then?

@Importantbrain
What was your weight before you did 5 months of AIP diet?

Looking at how shockingly restrictive this AIP diet is you must have lost a lot of weight in a short amount of time? I’m honestly not surprised you weigh only 65 kgs despite being 181cm tall.

I’m trying to map out whether AIP diet is something for me to try out the coming months but I can literally see myself shrivel up and starve to death after like a week or two on this diet.

What did you eat to get some proper protein/carb/fat intake because right now all I can think of is eat lots of chicken and sweet potatoes and that’s about it. Could you share a meal or two that you frequently ate?

Dude sure that you really have PFS? I also tried a keto diet and it did nothing for me in the direction except weight loss.

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Happy to hear about your symptom relief. I’ve struggled to stay on carnivore/keto consistently but I definitely notice significant fluctuations depending on my diet. Keto hasn’t been a magic bullet for my neurological symptoms but I’ve still seen other improvements when I was on it.

I appreciate you sharing your story as it helps give me some motivation to really stick to a strict diet. Sorry to see people responding so rudely to you. It’s fine to be skeptical but to hear people say you don’t have PFS because you don’t have this or that symptom is just as awful as when you go to the doctor and they won’t believe that you’re suffering.

If people keep getting this response when they share their experiences then they might as well decide not to share at all and that robs us of valuable information, anecdotal though it may be.

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Removed due to misunderstanding on my part.

AIP isn’t the same as keto. Far from it. I wasn’t asking about keto. My regular diet is not purely keto but looks very much like keto in the bigger picture. Honestly, keto is rather easy to get into and keep up.
I don’t think you’ve googled AIP if you’re assuming keto is similar.

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Ah, I apologize. I saw OP mention Carnivore so I assumed they were similar. My bad.