Nendo's Story

Member Stories
#1

  1. Where are you from (country)?
    UK

  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 Search

  3. What is your current age, height, weight? 29, 5ft 8 70kg

  4. Do you excercise regularly? If so, what type of excercise? 2/3 times a week, heavy lifting

  5. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)?
    Currently a mixed diet, minimal fast food.

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

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

  8. How old were you, and WHEN (date) did you start Finasteride?
    February 2014

  9. How old were you when you quit, and WHEN (date) did you quit?
    February 2014

  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

  13. How long into your use of Finasteride did you notice the onset of side effects?
    14th day but noticed minor sides which a few days earlier which I had not linked to Propecia.

  14. 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
[ ] Complete Impotence
[ x] Loss of Morning Erections
[ ] 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
[ x] Memory Loss / Forgetfullness
[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

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
[ x] Weight Gain
[ ] Gynecomastia (male breasts)
[x ] Muscle Wastage
[ x] Muscle Weakness
[ x] Joint Pain
[x ] Dry / Dark Circles under eyes

Misc
[ x] Prostate pain
[ x] Persistent Fatigue / Exhaustion
[x ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[ x] Vision - Acuity Decrease / Blurriness
[ ] Increased hair loss
[x ] 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 continued to experiment with different recovery plans but have yet to stick to one for a sustained period of time.

  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)?

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

  4. Tell us your story, in your own words, about your Finasteride usage and side effects experienced while on/off the drug.
    Ok where do I start…
    It was around my second week on this poison I started to experience a few mild side effects.
    I noticed my fatigue had increased and that my erections were not as firm as they usually were. I did not link the fatigue to the drug but was cautious about the sexual sides as these were the only sides I was advised about when prescribed with Propecia in a London hair loss clinic.

It was in the gym when I first realised there was something wrong and it was literally the scariest night of my life. I had just finished an intense workout and when I reached the changing room the left side of my leg felt numb and then almost immediately this spread to the whole left side of my body.
I left the gym and my friend kept asking me if I was ok as I didn’t look too well and felt very light headed prior to leaving.
I realised on my way home that I was in the midst of the most horrific panic attack. I have a history of panic attacks but had not suffered from any in over 6-7 years.
In my panic I decided to head over to my mum’s place as I really did not want to go home alone.
I had been taking a pre-workout drink packed with creatine and caffiene so automatically assumed this was the cause and I just had to ride it out until the symptoms disappeared. The next couple of hours were awful, I could not speak, eat or focus on anything. I eventually fell asleep and woke up in the morning feeling recovered however as soon as I stood up everything came rushing back. The left side of my body was numb, heart racing and I was slurring my words.
I called the hospital and described my symptoms, and they advised that they believed I may have suffered a STROKE and should head to the hospital immediately.
Now you can imagine the ride to the hospital, I thought I’m a goner and I was just reminicsing my whole life whilst on that journey. Anyways the Doctor laughed after a few quick examinations and advised that I had not suffered a stroke. Blood Pressure and ECG were all fine. I was sent on my way and felt relieved but was still very anxious as I knew something was not right. I couple of days passed and the anxiety disappeared but I felt in a zombie like state.

I decided to investigate Propecia for any other potential side effects which is when I stumbled across a number of websites but not this one. I immediately went cold turkey. I assumed because I had only taken a total of 14 pills that all side effects would reverse. Well we all know what happens next, 2 weeks went by, felt great, had a heavy night of drinking and then woke up the next morning with the mother of all crashes! I assumed it was a hangover but after few hours I knew something was not right. I decided to search again and I found this website. I remember sitting in my bed and just thinking I had destroyed my life.

In my first few months I tried the hollistic approach for recovery.

  1. Juice fast - 7 days. This was actually really good and I wish I had done pre-fin just to experience the full effects.
  2. Gluten Free diet for 3 months - Did not improve any sides but completely cleared my lower back pains. I would recommend this diet and juice fasts to anyone who also suffers from this and chronic fatigue.

Now I just wanted to give some of the new PFS victims hope. I am improved significantly from where I was 11 months ago. Nowhere near recovered but definitely a lot better. I would say I am at around 60%.

Improved Symptoms:
Insomnia - This was absolutely horribe, but even though I wake up few times in the night I now manage to get back to sleep instantly. Still alot of room for improvement.
Muscle Wastage - Seems to have reversed now and back to pre-fin
Brain Fog - Has definitely improved some days really good and some days are just about manageable but no longer a zombie.
Fatigue - No longer constantly tired, but still have bad days now and then.
Frequent Urination subsided after a couple months and now back to normal

I wrote this back around 4 months ago I will post again with updates.

#2

Ok so just prior to submitting my previous I had and have been having massive setbacks and not necessarily propecia related.

At this point I was seeing improvements. I was carb backloading, weightlifting 3 x a week, cycling tongkat ali, vitamin d and tribulus and cycles of alphahard, basically my own variation of viewtopic.php?f=6&t=10342

I woke up one morning right at the end of June with a weird dull ache on left temple just above my ear. Funny thing is when I first crashed I had this weird pain in my left temple and face too, I can only describe it as a dull ache with tingly/numb sensation in the face. This disappeared bak then but remained faintly after a few months after my crash so wasn’t really too noticeable.

Over the next couple of days the pain was getting worse and prominent pulsating temporal artery running right upto to the top of my forehead. This sent my anxiety through roof, especially since my father died of a brain hemorrhage and anything related to my head panics me instantly. Now since my crash I’ve had a constant pressure headache at the top and esoecially around the forehead area but this was different.

Saw GPs, did literally every blood test, saw a neuroligist, thought I was ok and sent me on my way, had an MRI of head, neck and pituary gland, all came back clear. I also tried acupuncture and chiropractor which did literally nothing apart from give make me feel weird for a whole day and aggravate my headaches further.
Eventually after tons of research I came across TMJ which matched all my symptoms and met with a specialist in London who confirmed I do indeed have a dislocated disc in my left jaw. Can’t believe I never realised this before as my left jaw does pop out when opening my mouth.

I had been punched in my left jaw {very hard} around a year prior to taking propecia however with all the sleep disturbances since taking this poison I began to notice i was grinding my teeth badly in my sleep. The TMJ specialist advised me to give it a couple months before proceeding with any form of treatment as the symptoms may disappear.

By this time due to the sheer stress my body has reverted to near post crash status, literally fight or flight mode. I started developing major hypothyroidism symptoms {I had always planned to getting this checked out anyway due to the thyroid issues many guys on here have suffered post fin and how our symptoms are very similar anyway}

TSH and T4 came back normal through my regular GP, however I booked to see a thyroid Dr privately to do a full test to rule it out completely.
He also got me to do a comprehensive adrenal stress profile too. I get my results next Friday and will post all my other blood tests here.

Now in between this I also went to see a NUCCA chiropractor who specialise in the upper cervical spine only to have x-rays done as I presented all symptoms of a atlas c1 vertebre misalignment too. Had x-rays and I was completely out of alignment, have had 2 adjustments so far and my vision, anxiety and digestive issues are all beginning to improve. The amount of symptoms you can suffer from just having your atlas out of alignment is quite fascinating.

I have read so many posts on this forum and do agree with some of the posters who say we all thought our bodies were completely healthy prior to fin but probably deep down they weren’t and all it needed was this lethal poison to wreak havoc mentally and physically. I used to think I was so healthy, but I did suffer from IBS for nearly two years prior to Fin so I do believe that the gut is a key component to recovery.

I do have some questions and would like to know if anyone here has/had the below

  1. TMJ?
  2. c1 and c2, atlas and axis checked in their neck?
  3. shortness of breath? This has got really bad for me after all this, not sure if this is Fin/thyroid related.
  4. pain in inner arm, bicep area?

It has been quite encouraging seeing a few recoveries or near full recoveries recently. This setback has really knocked me, I was finally beginning to improve and now I have a new symptoms to deal with.

I have read BrongFogBoy recent thread - viewtopic.php?f=1&t=10595 - I will attempt to start his method once I get my thyroid/adrenal results back.

#3

Updates:

June 2015 - Woke up with pain above left temple after working out in the gym the night before, *note I had been carb backloading eating a ton of nuts during the day. Week goes by no change to the dull ache now accompanied with inflamed temple artery. A few visits to the GP and advised it was probably just a headache and I must had slept awkwardly on my head…this is when I left my GP and signed up to my old practise when I was a teen. I couldn’t believe he would give me that diagnosis based on weeks of persistent dull ache with an inflamed artery that was never there before!

July/August 2015
New GP sent me for MRI of head, pituitary and cervical - all came back clear.
After tons of research I came across TMJ - temporomandibular joint disorder, the symptoms are deliberating. I met the top two specialists in London and they both confirmed I have TMJ. Gave me a bit of relief to finally have a diagnosis, was advised to leave it for a month or two as it may resolve on it’s own.
I decided to go a chiropractor as I thought it might help with the back pain I was experiencing from PFS and my TMJ. He made things 1000x times worse after a neck manipulation!!!
Two days laters, headaches, couldn’t focus, no appetite, constant nausea, tightness in neck when moving left or right.

September 2015
Symptoms of no appetite, constant nausea and stiff neck continued for a few weeks, after tons of research I came across Atlas c1 misalignment. Symptoms - atlantotec.com/en/disorders … -disorders
This was exactly what I was experiencing, as you can see some of the symptoms are very similar to PFS too. The only thing that would improve my concentration, appetite, stiff neck and nausea was diazepam. After the chiropractor I had extreme sound sensitivity and I already had issues with anxiety in public places due to PFS but now it was only manageable with diazepam as it relaxed muscles.
Luckily a Nucca practising chiropractor was in London, gave her a visit and immediately she knew what was wrong with me by just looking at my hips, shoulders =, neck position etc. Had a xray confirming the exact position of my atlas bone and then she corrected it and immediately everything felt better. Less anxiety, could concentrate, no more nausea, appetite returned. I even slept a full 8 hours that night!
However I must go back every 3 weeks to check my alignment as I keep coming out, this is a long process.

October
Decided to start focusing on recovering from PFS, i had stopped all gym, supplements, diets since June as this whole ordeal caused me so much stress and I felt my PFS sides were getting worse, especially muscle wastage/joint pain. Decided to get Thyroid levels checked privately as the regular tests with GP came back all in range but they wouldn’t check RT3. Met with Thyroid naturopath DR who tested me for RT3, 24 hour salivary cortisol and 24 hour thyroid.
RT3 was above range, cortisol was at high end or slightly over in both PM readings and low T3 in 24 hour urine test.
Dr decided to put me natural supplements to support adrenals, nutri adrenal, nutri thyroid and nutri t convert to get more thyroid hormones into my tissues.
I immediately noticed more energy, really vidid dreams every single night (not sure if this was a good or bad thing) accompanied with nocturnal erections every night without fail.

Just before this I might add that my eyes had become really dry, blotchy/visual snow type vision with floaters. Was referred to the eye hospital by my optician and they said no issues with eyes and it must be cerebral. I thought this might be a thyroid issue, it did get slightly better but this has been getting again recently and I 'll explain in a bit.

End of October I started experiencing awful headaches again but this time around my sinus region one sided mainly, bridge of nose around right eyebrow, right forehead and top of head. I did have a really bad cold prior to going to mexico at the beginning of September so I presumed this may be a sinus infection. But it was really painful and was causing a weird type of brain fog too. Again i was worried as my father died of a brain aneurysm so I am always cautious of my head. I privately went for another MRI to rule anything out, again came back all clear also showing now nasal blockage. ENT via GP referral also confirmed no sinus disease.
Now the interesting part, prior to getting an ENT referral my Dr gave me 2 sets of antibiotics which I took as I also initially presumed it must sinus infection due to the bad cold I had 6 weeks prior. Both did absolutely nothing apart from making my insomnia and digestive issues even worse, I finished only 2/3 of each prescription.

December
I decided that my headaches must be due to my TMJ disorder so started splint therapy after I had to have another MRI specifically for my TMJ to showed where the discs had displaced and what stage I was at, this is ongoing now with very minimal improvement.
By this point I decided to come off my thyroid supplements as from the initial improvement I seemed to be declining into a sense of horrible derealization, worse sleep, just generally losing my sense of reality. My original brain fog seemed to have disappeared and foods didn’t necessarily trigger it anymore but it just didn’t feel like I was the one actually processing the thoughts, more like I was watching the world through a dirty window and everything just didn’t seem real anymore. I told my thyroid dr I had stopped and agreed to lay off and see what happens to my symptoms and just continue with vit d and c supplementation to support naturally.
Now I had a persistent itchy rash that started in September that just wouldn’t budge, similar to when I first crashed. After trying different topical creams my GP gave me an anti-fingal med Itraconazole/Sporanox, felt fine the first couple days and then suddenly I was hit pain in lower limbs and general numbness across my whole body but mainly in hands and feet. Cold and hot flushes etc. The feeling was similar to my first crash but nowhere near as intense.
My skin felt like I had been dipped in bleach, really strange and worrying. I told my Dr and he advised me to stop which I had done already.
Mid December I was deteriorating and the peripheral neuropathy feeling wasn’t budging so I decided to go a&e as I also had bp of 150/100 which I have never had, did the usual tests and they said everything was fine.

31st December
I was starting to literally feel like I was dying, derealization was at it’s peak, but it was the multi system join pain and bone click, I had lost so much weight the past few months and I was struggling to carry my weight with so much pain mainly in the lower half of my body. I got home and had a glass of kefir I bought from the supermarket and then instant crash like my first crash. Everything was slow motion, fatigue, joint pain/clicking like I’ve never experienced and for the first time I had serious suicidal thoughts, luckily I had my family and girlfriend with me. Went a&e after a couple days as I felt so weak, never this bad from PFS. Again did all tests and everything showed normal except elevated eosinophils which was actually elevated on previous visit to the hospital but nobody picked up on this. They did an x-ray of my chest too as had been suffering from shortness of breath since my Mexico trip, again all clear.
In between both hospital trips my Dr decided to test for allergies to wheat, soya, eggs and milk plus he wanted to rule out Lymes and check my IgE immunoglobulin.
Everything is normal except IgE at 900kU/L!

I have been referred to a rheumatologist whom I meet on Thursday and waiting for an approval from my health insurance for a gastroenterologist.

So I am in worse position now then I was 20 months ago with my eye sight getting worse and worse now. I’ve been signed off work for two weeks by my GP.
So far just Eosinophils and IgE levels raised. I will post my Thyroid results from back in October and current blood tests from A&E from a couple weeks ago.

Things I think may have contributed to getting me worse:

  1. Thyroid Meds, maybe the dosage wasn’t right.
  2. Use of diazepam over a couple month period, on and off to control the c1 atlas issue and tmj flare ups. I didn’t use this daily but I’d say maybe twice a week on average over 2-3 months at 2mg only.
  3. Excess Stress, no exercise and very little activity in general with a poor diet.
  4. Taking a strong probiotic 50 billion with 10 live strains bacteria, I felt it was improving my brain fog but making other symptoms worse and could potentially been causing more havoc inside.
  5. I was cycling tongkat, tribulus, alphahard and pct for a few months. I had just started a alphahard cycle for around a couple weeks and had to abruptly stop due to the the TMJ headaches back in June. Maybe that could have messed up hormones without any PCT or management since?
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#4

January 25th - So done a bunch of tests recently and everything in range except the below.

Homocysteine - 15.1 in first test and then 16.4 in repeated test - umol/L range is less than 15
P-Anca antibodies tested positive!
elevated eosinophils - 0.63 - rang 0.0 - 0.4

My symptoms in the last three months have worsened.

Eye/Vision deteriorating with permanent blood vessels.
Numbness in hands, feet and head
muscle and joint pain
weight loss
cognitive issues worsening - short term memory getting worse.
skin rash
digestive issues - indigested food, stool consistency, foul smell.
urination - slight sting when urinating and change of flow every time I go.

So P-Anca antibodies indicates Vasculitis and my symptoms do really match up. I am awaiting some further tests and have been referred to Opthamologist, Dermatologist and Urologist.

Has anybody come across anyone on PH or this forum who has tested positive for A.N.C.A or P-ANCA? I’ve searched and can’t find anything.
I have just started my 3-day stool sample for Genova GI effects too.

Will post up full bloods in a couple days as await more results.

Update: Feb 24th 2016

Update:

Had a follow up with the Rheumatologist and it seems I read my results wrong and my P-ANCA is actually a false positive due to no MPO/PR3 antibodies.

She is quite confident I do not have vasculitis however does believe I have a parasitic infection of some sort because I had a trip to Cyprus followed closely by Mexico in September. This is approximately when I my symptoms began to get progressively worse. I did mention PFS to her but decided not to dwell as we all know the reaction from majority of Drs.

I just don’t understand why suddenly my symptoms got worse. Another interesting this is I have Toxoplasmosis which indicates a previous infection, I do not know when I got this but could not find anything else at all on both forums. I wonder if anyone else has this too.
Now Toxoplasmosis is actually fairly common - nhs.uk/conditions/Toxoplasmo … ction.aspx

This article is interesting regarding affects - news.nationalgeographic.com/news … s-science/

Male Hormone Profile

FSH 1.6 range 1.6 -12.4
LH 2.8 range 1.7 - 8.6
Testosterone - 19.5 - range 7.6 - 31.4
SHBG - 60 - range 16-55 *high
tesosterone/SHBG ratio 32.5 - range 24 - 104
Prolactin - 199 - range 86 - 324
Free testosterone -17.16 - range 4.0 - 30.0
prolactin 199 - range 86 - 324

Opthamologist - I have lumps under eye lids which indicates severe allergic reaction, does not believe my homocysteine levels are causing vision issues. Eyes producing oil which is blurring my vision. Dr said could reverse when the rest of my issues settle in my body - On steroid drops for 4 weeks until follow up March 19th.
Urologist - Believes urination issue is a anxiety issue. I had a kidney/bladder ultrasound and flow rate test which were both normal and I refused x-ray as I felt there is no need. I have a follow up anyway this Thursday.

Gastroenterologist is unsure what is causing my problem but would like to perform a colonoscopy and endoscopy. I insisted a stool test first and further bloods. Nothing abnormal found in urine.
Stool test negative for Elminth Ova, Protozoal Cysts and other parasites (though I don’t know what parasites they test for).
Eosinophils actually gone down to 0.51 - range 0.0 - 0.4
I will see the Rheumatologist in a couple weeks to repeat some tests and need to see an ENT and dermatologist.

I have received GI effects stool results and I have inflammation eosinophils EPX and high IgA secretory fecal fat.
Very low butyrate and complete imbalance of bacterias as evident in the PCR. No pathogens or Parasites however their appears to be some discrepancies so it is being queried with Genova. After researching my results they seem to indicate leaky gut as well as my own recent digestion issues. I have had IBS issues prior to Fin usage so this is definitely my main focus and will meet with a functional medicine Dr ASAP.

Current protocol:
Organic Paleo diet - However recently added small amounts of potato and white rice, not every day though.
Curcumin Meriva SR
Vit D
Cod liver oil
Methylmate B
Folinic acid
b12
garlic
TMG
Resistant Starch

#5

Did your Colonoscopy find any evidence of any gut inflammation or Ucler’s? How about any evidence of Crohns disease or Ucler active Colitis. Autoimmune diseases are suspected of causing these issues in the gut and it’s been discussed in the past if PFS is caused by a abnormal autoimmune response.

I’m interested enough in gut theories but I’m a see to believe type of guy. If inflammation in the gut is involved than there would need to be some evidence of this. Has anyone had a Colonoscopy that found evidence of IBD, inflammation or ulcers.

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#6

My colon & endoscopy found very little. I have a hiatus hernia which completely explains my acid reflux.

I done one round of Humaworm which brought my parasitic infection under control and kickstarted my recovery. I have now learnt that I am metal toxic. I done a hair test which showed potential toxicity however I react to high thiol foods and to true chelators.
Metal toxicity & parasites will trigger IBS and gut inflammation. In my opinion we must treat mold, metals, fungi and parasites.
I am doing Andy Cutler chelation and seeing improvements.

The key to curing is Liver & Gut.

#7

Any update on your situation? Seems my eyes are getting worse. I have stopped all vitamins and supplements. Just taking Remeron… which I know can cause eye problems.

1 Like
#8

friend，any news？

1 Like
#9

I’d love an update your symptoms are extremely similar to mine.