Another post accutane sufferer

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)?
Argentina
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?)
I think I found the forum in acne.org
What is your current age, height, weight?
26 years old. 1.80m 95 kg.
What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)?
Isotretinoin
What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
I dont remember, maybe 40mg/day
What condition was being treated with the drug?
Acné
For how long did you take the drug (weeks/months/years)?
I did the courses over several years. The last one being at least 6-8 months long.
How old were you, and WHEN (date) did you start the drug?
I took isotretinoin for the first time at 15 (2007) then at 16 (2008) and the last course when I was 19 (2011)
How old were you when you quit, and WHEN (date) did you quit?
19 or 20, cant remember
How did you quit (cold turkey or taper off)?
taper off
How long into your usage did you notice the onset of side effects?
The worst came after finishing the last course.
What side effects did you experience that have yet to resolve since discontinuation?
Loss of libido, numbness, more liquid ejaculation, impotence, anxiety, memory loss, brain fog, depression, suicidal toughts, muscle twitching, joint pain, lack of motivation.
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
[*] Complete Impotence
[*] Loss of Morning Erections
[*] Loss of Spontaneous Erections
[*] Loss of Nocturnal Erections
[*] Watery Ejaculate
[*] Reduced Ejaculate
[*] Inability or Difficulty to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

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

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

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

[*] Other (please explain)

It is a bit weird to write this, and I think itll raise skepticism but right after I finished my three courses of isotretinoin I had some kind of shift in my sexual preferences and had very high libido and persistent homosexual thoughts.
What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
I’ve tried vitamin E. Also took paroxetine and lithium because of the anxiety and panic attacks.
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.

I first took isotretinoin when I was 15 years old because of my acne conglobata. The first time I experienced the typical side effects as dry lips, nose bleedings, joint pain, and some depression. The second time, when I was 16 the side effects were the same. It wasnt until a few months after the third course that I first suffered from the loss of libido and impotence. And a few years until I crashed and felt like shit.

It was in 2015 when the worst began. I had moved to another city and started studying to be a teacher. I had been suffering from importence since 2012 but then I started experiencing anxiety that felt like my brain was being stabbed, panic attacks, confussion, loss of memory, problems focusing, finding words, and persistent intrusive thoughts. Also obviously the sexual problems. I had to abandon college and come back to my hometown, in 2016 I started taking lithium and paroxetine to treat the anxiety, depression and intrusive thoughts, took the antidepressives for 6 months and left them cold turkey.

Since then things haven’t changed much. For now at least I dont have intrusive toughts or permanent sadness. Some days I feel better, some days worse. But I live with the permanent idea that I dont want to live another 10 years feeling like this while everybody else is going on with their lives. Everybody is having fun, progressing in their careers, meeting girls. And I am here, feeling like a sad 60 years old in my 20’s. I can have a more or less decent erection when I use viagra, but I just dont feel the desire or the pleasure when having sex.

I’ll post my blood tests here:
December 2014


July 2015

December 2015



August 2016


Subiendo…

2 Likes

Hi there @Victorcillo and welcome to our forum.

Thanks a lot for sharing with us your experiences with isotretinoin and I’m really sorry that it has had such a negative impact on your life. On the positive side you coming here is part of the collective effort to marshal resources into finding out what has happened to us all and from that formulate treatments to resolve our ongoing issues.

To that end the pfs foundation is at the forefront of all of this in funding studies which are already making positive discoveries (https://www.pfsfoundation.org/) and there are also efforts ongoing here which you can also contribute to: Important Announcement: Two Community-Led Research Projects - Please Participate

Any help re: the above is really appreciated.

I noticed that you mentioned a noticeable shift in sexual orientation right after finishing your course of medication. Homosexual feelings from having taken propecia have been reported by other men so you are not alone with regards to this.

Would it be possible to scan your test results so as they appear brighter. They are quite difficult to read as they are just now.

Thanks :slightly_smiling_face:

2 Likes

We are in the same boat man

1 Like

Thanks @Scotsman I truly apreciate your words. I will scan my tests soon.
@PAS I know my friend, this is indeed a very hard battle.

1 Like

We’re going to assemble here, fight this battle, and win.

Welcome to the forum!

5 Likes

I wanted to ask, are there any other argentinean or spanish speaking victims of isotretinoin in this forum?

I took my time but here are all my blood tests since 2014 until 2016. I haven’t done more since then and I took paroxetine, lithium and lamotrigine in 2017. Sorry for bringing the thread up. Any other accutane victim has some blood tests to compare? Thanks

15/12/2014
Truiidituribuba TOTAL T3 135.61 ng/dl ref (60 - 200)
T4 Tiroxina Total 7.70 ug/dl ref (5.50 a 13.50)
TSH - insuficient sample
Peroxidasa tiroidea, Ac. Anti (ATPPO) 281.91 UI/ml ref (until 60)
Prolactina 8.51 ng/ml
Testosterone 3.76 ng/ml ref (2.62 - 15.90)

30/07/2015

T3 118.29 ng/dl ref (60 - 200)
T4 6.60 ug/dl ref (5.50 - 13.50)
TSH 6.46 uUI/ml ref (0.50 - 5.50)
ATPPO 29.19 UI/ml ref (until 60)

02/12/2015

TSH 3.80 uU/ml ref (0.40 - 4.0)
T4 libre tiroxina efectiva 1.01 ng/dl ref (0.80 - 1.90)
Estradiol E2 37.0 pg/ml ref (until 56)
FSH 1.93 mIU/mL ref (0.95 - 11.95)
LH 3.04 mIU/mL ref (1.14 - 8.75)
Testosterona plasmática 5.64 ng/ml ref (1.42 - 9.23)
Testosterona biodisponible 3.34 ng/ml (1.90 - 2.95)
Prolactina 9.69 ng/ml ref (2.50 - 17.0)

11/08/2016

T3 1.08 ng/ml ref (0.58 - 1.59)
T4 5.9 ug/dl ref (4.5 - 12.5)
TSH 5.6 uU/ml
FSH 1.54 mUI/ml ref (1.4 - 18.0)
LH 3.0 mUI/ml ref (1.5 - 9.3)
Prolactina 9.6 ng/ml ref (2.1 - 17.7)
Antigeno prostático específico 04 ng/ml Ref (until 4.0)
Testosterone 5.3 ng/ml ref (2.4 - 18.3)
Testosterona libre serica 11.5 pg/ml ref (8.69 - 54.69)
Testosterona biodisponible 6.6 nmol/l ref (5.05 - 15.0)