29yr old - 8/9 years on DUT & FIN. Coming off now and mentally free-falling

This is my situation as per an PM sent to MEW (he suggested i post a public topic to facilitate through sharing).

Brief synopsis: DUT & FIN for 8/9 years…beeen cutting down on DUT over the last 4 months (from 5* 0.5mg/week to 1,2 per week) to quitting this week. It seems that as DUT levels have fallen, i am already beginning to experience post-fin syndrome. Becoming a mental retard with no energy. Main aim is to stop this developing further - thoughts welcome.

Friday 07/05 - Just got initial blood test results and all ok ( incl Testosterone but DHT, Vit D, B will not be ready until next week) although Iron is very low and high ‘sex hormone (?)’ which could be binding to testosterone. I will post the results when they are complete next week. Anyone else come across low iron levels?

HelpNeeded2010
To: Mew
Posted: Tue May 04, 2010 10:33 am
Subject: Request for Advice

Hi there,

As you’ve recovered and been through a lot, i was hoping you wouldn’t mind advising me on where i am.

I am a Finasteride and Dutasteride user for the last 7/8 years. I am now 29.

Over the last 7/8 yrs While i’ve always been a bit foggy and used viagra here and there to make things ‘stronger’; it is my mental state has got really bad over the last few months as i’ve slowly cut down on Dutasteride ( to 1 cap of 0.5mg per week) and FIN.

I’ve been ridiculously slow, memory is shocking and just generally feel like i’ve been 12 rounds with Tyson (the fog!). Work is beginning to really suffer. Speech, writing (leaving out words), concentration and even ability to read all rapidly going down hill. Example of the memory failure is giving my credit card number to an operator over the phone, then giving her my address before asking ‘dont i need to give you my credit card number?’. It seems my brain is so tired/disconnected that it just cant concentrate on anything… …nothing goes in (I’ve always been a high achiever academically). Cant remember if i’ve already washed myself in shower sometimes. Becoming a geriatric

I also have stomach issues (had colonoscopies etc to find out what was wrong) and is the reason why i’ve cut down on Dutasteride. As my mother constantly says, i also have massive circles under my eyes too - eyes v sore and lack of ability to focus on objects due to tiredness feeling. Wake up shattered. Also bad tinnitus in one ear (first had when 24…got very bad recently).

Anyway, right now, i’m terrified. Things are mentally getting worse and worse, and after reading all on here, i believe it’s going to down hill from here. Physical issues are ok (mild ED) - it’s the mental performance and whether they are permanent that is the main worry.

So i came across this website yesterday (very poor sleep last night as i realised what may be round the corner) and was proactive today in booking an appt with an Endocrinologist

What i need to know now is what do i need to tell him. What do i need to test? How do we treat (do i slowly ween off?) do we wait to see what happens? I am anxious not to let things get worse mentally in case things are permanent.

Any advice would be amazing (i am v worried and becoming a bit unhinged about it all - broke down when trying to book the appt with the Doc through sheer relief / had to get it out etc.)

Thanks in advance

And the template…

  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

  1. What is your current age, height, weight?

6ft 2, 85 kg, 29 yrs

  1. Do you excercise regularly? If so, what type of excercise?

Yes. Weights in gym (post work out gives me a much needed buzz, some energy)

  1. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)?

Healthy including variety of protein

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

hair

  1. For how long did you take Finasteride (weeks/months/years)?

FIN (1 yr) then DUT (6yr) then DUT&FIN (1yr)

  1. How old were you, and WHEN (date) did you start Finasteride?

21

  1. How old were you when you quit, and WHEN (date) did you quit?

being reducing DUT for last 4 months or so (from 4,5 * 0.5mg per week to 1 per week). FIn - took at beginning and end (probably 2,3 *0.5mg in last few months)

Quit all on tues 04 May after reading this web page.

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

Cold turkey - although DUT has half life of 5 weeks so will be taper off effect

  1. What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic?

Fincar, Avodart

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

At average over

DUT: 5* 0.5mg per week

  1. How long into your use of Finasteride did you notice the onset of side effects?

first few months, got used to them then slight increase over 7 years. but massive exacerbation over last 4 months as tapered off them

  1. 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] Occasional Erectile Dysfunction
[ ] Complete Impotence
[ ] Loss of Morning Erections
[ ] Loss of Spontaneous Erections
[ ] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[ ] Reduced Ejaculate
[ x] 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
[ ] Extreme Anxiety / Panic Attacks
[x ] Depression / Melancholy

Physical
[ ] 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
[x ] Gynecomastia (male breasts)
[ ] Muscle Wastage
[ ] 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”
[ x] Vision - Acuity Decrease / Blurriness
[ ] Increased hair loss
[ ] Frequent urination
[ ] Lowered body temperature

[x ] Other (please explain)

Tinnitus (just one ear)

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

none yet. Monitoring levels of homones against current symptoms

  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)?

Will post once recieved

  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.

Please see above

Here is my reply to your initial email.

Charlie,

I have not completely recovered from Finasteride use. I have made improvements, particularly in mental health areas, however, since quitting 5 years ago.

Are you planning to quit Finasteride? This forum is for guys who quit 5AR inhibitors and still have issues. If you are not planning to quit both drugs whatever advice given will be pointless.

These are common problems for many guys on either drug. Read MENTAL SIDE EFFECTS section of this forum, and the sticky posts at top of subforum.

  1. Read through FAQs on propeciahelp.com (left menu) as it has advice on coming off drug. My advice would be to ween off as much as possible by spacing out days between dosages.

  2. Read through the FINASTERIDE STUDIES section of this forum and you’ll come across lots of info you can print out and bring with you, especially as it relates to Finasteride’s inhibition of neurosteroid production (allopregnanolone, THDOC) which negatively affects GABA-A receptor function in the brain. This is doubly so for Dutasteride since it inhibits both 5AR1 and 5AR2 enzymes, and 5AR1 is found predominantly in the brain.

  3. Read TESTING page on propeciahelp.com under the Post-Finasteride Syndrome section for info on blood tests.

  4. Read DOCTORS page on propeciahelp.com under the Post-Finasteride Syndrome section and consider contacting Dr. Alan Jacobs for more details about neurosteroids.

However, I would not be too concerned. The vast majority of men find their symptoms clear up within weeks or months of stopping the medication, so odds are on your side things will be fine. But until you quit, you won’t know.

Hey mate,

I took Fin for a similar amount of time. I had all the same mental problems. Slow thinking, foggy, slurring words, cannot think of words, anxiety. The good news is, this has really got better over time (1.5 years). So there is hope!