9 years and 3 dozen doctors later

Member Stories
#1

BEFORE POSTING IN THE MEMBERS STORY SECTION, PLEASE COPY/PASTE THE FOLLOWING SYMPTOMS/PROFILE TEMPLATE INTO YOUR POST.

This is so that we can more easily track our symptoms and hopefully find patterns in our syndrome. This will also help others understand your background, and help us try to determine what are the most commonly experienced side effects after discontinuation of Finasteride.

COPY AND PASTE THE FOLLOWING INTO YOUR OWN POST, then answer the questions.

  1. Where are you from (country)? USA east coast

  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?) web search

  3. What is your current age, height, weight? 31, 6 foot, 160

  4. Do you excercise regularly? If so, what type of excercise? Off and on.

  5. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)?
    organic, low carb and sugar diet

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

  7. For how long did you take Finasteride (weeks/months/years)?
    Few months. Can’t remember exactly.

  8. How old were you, and WHEN (date) did you start Finasteride?
    23, late 2003.

  9. How old were you when you quit, and WHEN (date) did you quit?
    23, early 2004.

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

  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 daily

  13. How long into your use of Finasteride did you notice the onset of side effects?
    few weeks roughly. Had braces at time so blamed braces for irritability I had.

  14. What side effects did you experience while on the drug that have yet to resolve since discontinuation?
    Frontal headache, fog, irritability
    Put an X beside all that apply:

Sexual
[x ] Loss of Libido / Sex Drive
[x ] Erectile Dysfunction
[ ] Complete Impotence
[ ] Loss of Morning Erections
[x ] Loss of Spontaneous Erections
[ ] 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
[ ] Slurring of Speech
[x ] Lack of Motivation / Feeling Passive / Complacency
[ ] Extreme Anxiety / Panic Attacks
[ ] Depression / Melancholy

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)
[x ] Muscle Wastage
[ ] Muscle Weakness
[ x] Joint Pain
[ ] Dry / Dark Circles under eyes

Misc
[ ] Prostate pain
[ ] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[ ] Vision - Acuity Decrease / Blurriness
[x ] 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?

Dozens. First told my GP how i was feeling crazy and anxious and irritable and he said propecia couldnt be the cause… Then thought headache was from dental braces so saw several dentists, orthos which offered nothing…then ENTs for sinus and took antibiotics, then xrays CT MRI EEG and neurologists, and then tried more alternative doctors who removed mercury fillings, addressed allergies, checked vitamin and minerals etc etc. Mineral balancing helped me relax because adrenals were backwards. Tried chelation which showed high aluminum in post EDTA provocation but recent discovery that I have extremely low T, vit D, androstenodione and pregnenolone have made me know Propecia had to have caused all this. Bloodwork also showed I’m ANA positive which is autoimmune marker which I’m assuming is related. I take vit d3, probiotic, multiple and krill daily. This hell has tought me a lot!

  1. 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)?

I just know my testosterone, D, androstenodione and pregnenolone are low. Taking testosterone cream past few weeks. No improvement. Started pregnenolone 25mg orally last week and feeling not that great.

  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.

The daily headache and fog are horrible. I know this issue can only be figured out if we contact national news organizations (ABC, NBC, FOX…) and TV shows like Dr Oz and Mercola even. Dietrich Klinghardt is also an alternative powerhouse that can help shed more light on our issue. The drug has obviously screwed many people up but when people like me are out there who didn’t attribute their symptoms to this drug for several years… that means we need to spread the word. I’ve gained a lot of knowledge in how the body works so much that friends and family ask me to help their health issues but we can’t figure this out alone. The effects of this drug are very complex and we need to tell news shows in clear concise terms of how we feel and request that they should talk about this life-altering issue on their shows. Lots of people are too embarrassed to even talk about taking this drug or like me, their doctor thought I was too stressed from work which threw me on a 9 year tangent.

#2

Sorry you’ve been suffering for so long. And sorry doctor are too stupid to believe Merck’s “studies”. Something has got to change.

#3

Thanks. Eating well and exercising is a must to help.

#4

hey man,

i have randomly been looking into sinus type buildups. perhaps those could explain your headaches as i know there are such a thing as sinus headaches. maybe give a try to some nasal sprays and anti sinus type things a try over the counter at the store. i see you say you have tried sinus anti biotics in the past, but not sure if you have tried it recently or more basic stuff instead of antibiotics?

#5

I tried a whole bunch of things through the years since the first doc I saw had said Propecia can’t cause my headache and irritability. The antibiotics was one of them which didn’t work. Most sinus infections (which I don’t have) are actually caused by fungus and not bacteria so most stupid docs still prescribe antibiotics incorrectly.

Most of our immune system is in our gut and antibiotics kill that microflora which protects us from viruses and bad bacteria. I’m for more natural approaches like eating better, exercising and taking certain supplements. Having this crazy ass problem requires us to take care of our bodies more than normal.

#6

yeah man… i’m in the same boat as you. just curious if you had sinus buildup or not, maybe you should consider getting xrays for a closer look. i don’t think it necessarily means you have an infection.

#7

more and more people are coming with ANA positive.
what your doctor told you about ANA why?
Did your doctor ask you to go for further tests?
did you do this ANA while taking some supps like vitamin D3?
Please take
protein electrophoresis test.

#8

Do not waste your time screwing around with doctors now.

Do ALL the tests! And do siliva cortisol + blood + transcortin.

Do a URINARY steroid profile too.

CBC.

No point screwing around when you do not have enough info about what is happening in your body.

#9

i want to quote your message to say something about it. There are some mentals on this site that after reading ihp’s recovery think that they could heal not eating fruit and taking dangerous doses of nystatin per day, like 15 times the daily recommended doses. Can someone explain to those scientists who write on this site that eating well doesn’t mean do away with FRUIT, bread, pasta, potatoes, milk etc. that this is precisely what eating bad means!! the worrying thing is that i am one of them, i’m taking nystatin and eating bad even if i know that i’m just wasting money and time. I meant to focus particularly on eating well and on the diet that someone promotes here that is exactly what eating bad is.

#10

fruit is bad? that is strange

#11

I have inexistant ANA.
Esermon has obviously very poor english comprehension skills and even worse nutrition notions, nobody ever said fruit is bad in here I think. Some ppl are following Very Low Carb diets for different reasons pertaining to gut health, one of them being candida but not necessarily. A paleo diet has been reported by many here to be beneficial, and it recommends to limit greatly the intake of high sugar foods, which a lot of fruits are. Most fruits you will find at the supermarket have close to no nutritional properties and are no more than glorified sugar water actually. But in no way has anybody ever told that fruit is “bad”. SUGAR is.
Esermon if you think you are hurting yourself why do you keep doing this anyway???

#12

No, fruit is actually extremely healthy and many have lots of good vitamins. Check out whfoods.com/foodstoc.php and check under fruits, it gives you the rundown of the many health benefits.

But yeah… fruit can be bad if you have candida. Also, I have been thinking that somehow some degree of insulin resistance is involved in our problem as well and possibly that can explain how fruit is bad. Not sure though.

#13

Insulin resistance would be a result of unbalanced hormones.

And of course fruit is good for us :slight_smile:

#14

Wow, I have similar symptoms as you (specifically regarding the headache + brain fog)

Couple of questions that it would be awesome if you could answer:

1.) Have you seen any improvement over time? …in what areas?

2.) Have you gotten worse in any areas over time?

3.) Can you describe your headaches and what you have tried to nullify them?

My headaches are non-pulsing and they feel almost like a vacuum of discomfort. They seem to be focused right above my mouth/nasal cavity, but they can spread all over. The headaches in addition to the fog and anxiety make concentrating on anything a challenge. :cry:

#15

Hi, I have the exact same type of headache 9 months after stopping. I was wondering if they ever went for you or if you found a way to reduce them? Would be very grateful to hear back. Cheers.