End of marriage, End of Career, I now feel transgender

Member Stories
#1

  1. Where are you from (country)?
    USA (Tampa, FL)

  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 for “propecia scalp numbness”

  3. What is your current age, height, weight?
    38, 5’10, 148 (i used to be 185)

  4. Do you excercise regularly? If so, what type of excercise?
    Bike riding, gym, have stopped weight lifting

  5. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)?
    Mostly healthy, organic, protein shakes etc, with some fast food here and there

  6. Why did you take Finasteride (hair loss, BPH, other)?
    To prevent/reverse my male pattern baldness after seeing many ads for Propecia on TV and magazines

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

  8. How old were you, and WHEN (date) did you start Finasteride?
    I started Propecia in October 2007. I was 33.

  9. How old were you when you quit, and WHEN (date) did you quit?
    I quit in July 2009. I was 35.

  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?
    Ordered the generic via Internet made by Cipla (Fincar)

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

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

  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
[ X] Complete Impotence
[X ] Loss of Morning Erections
[ X] Loss of Spontaneous Erections
[X ] Loss of Nocturnal Erections
[ X] Watery Ejaculate
[ X] 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
[X ] Extreme Anxiety / Panic Attacks
[X ] Depression / Melancholy

Physical
[ X] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[X ] Penis curvature / rotation on axis
[ X] Testicular Pain
[ X] Testicular Shrinkage / Loss of Fullness
[X ] Genital numbness / sensitivity decrease
[ ] Weight Gain
[ X] 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
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[X ] Vision - Acuity Decrease / Blurriness
[ ] Increased hair loss
[ X] Frequent urination
[ ] Lowered body temperature

[ ] Other (please explain)
Numbness/loss of sensation throughout genital and lower abdominal area

  1. What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
    Tried Cialis/Viagra, didn’t work

  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.

Ended drug in July 2009.
10 year marriage ended in May 2010.
Years of success as self-employed software engineer ended as I failed to complete several projects and have a severe problem now with focus, concentration, motivation, fatigue and recurring depression.
I have not worked in 18 months.
Prior to discovering others with these symptoms, I suffered not knowing what was wrong with me and went through an identity crisis about my sexuality.
I feel as if my masculinity has slowly and continually to this day drained out of me.
I went through transgender therapy in December 2010 and am considering transitioning to live as a woman.
I have continued to notice, and others have noticed about me, more feminine features, male breast development (which has somewhat become less noticable as I have lost 35 lbs since stopping the drug).
I have a dark and noticable line of what looks like scar tissue running down the underside of the shaft of my penis, which feels restricting when my body attempts to have an erection, which is hardly ever anymore.
I do not have sexual dreams anymore nor morning erections.
My penis has a pronounced curvature to the left and is also rotated 45 degrees to one side.
I feel I became dissociated from my body due to this drug and only became aware of complete numbness and fibrous restrictions throughout left side of my scalp and face which only began to resolve 2 years after stopping the drug and are still a problem today.
I have had SEVERE panic attacks, recurring, which have sent me to the ER several times and had to call an ambulance 1 time. These have gotten less severe but it is more that I have learned to deal with them better.
I had to overcome severe depression and suicidal thoughts/tendencies during 2011.
I feel that I have begun to think and feel emotion more like a woman than a man since taking/stopping this drug.
Taking this drug nearly destroyed my life.
Don’t take it.

1 Like
#2

You got hit very hard. I’m sorry. I wish there was something more that could be said, but for the time being, there is not much known about the condition.

Breast development indicates a likely estrogen / testosterone imbalance. This could be treated. It is not the root cause of all of this by any means, but might help.

Don’t give up. There are studies in the works that should shed light on what is causing all of this. Hopefully they lead to a cure some day. You can find reference to them on this website

#3

Welcome. Sorry to hear you’ve been hit so hard. Alot of us deal with change of emotions and drastic changes to our bodies. You should try to get to an endocrinologist and have a full hormone panel. As you will notice from the research area of the forum things are moving forward rapidly and several initiatives are underway which top notch institutions. At least it appears soon we will have a much better idea of what we are up against.

#4

Thanks for sharing your story. We are very thanksful for coming forward.

#5

Thanks for coming forward. While the drug hasn’t made me necessarily feel like a woman so to speak it did make me into an emotional train wreck for sometime.

#6

@original poster

i saw in your ny post story that you could not take part in a law suit because you took a generic. contact the habush law firm, they may take generic users i believe since it is the exact same drug and causes the exact same symptoms. merck is still guilty.

also, thank you for having the bravery to come forward. stay strong.

#7

Another thread with discussion of this member’s story in the media:

#8

You wont be able to take action if you have used a generic. That is not how the law works. It would be like suing Apple when your Chinese fake iPhone melts.

#9

@oscar

attorneys i have spoken with feel differently than you, and for now, i will go with what they have said, since it seems they are more qualified to make that decision. who knows, maybe you will be correct when all is said and done, but as it stands, that is simply not the case.

#10

Fair enough. But remember, that law firm also once said they could take on international clients.

Here are some examples of the state of the law in the USA. (And these are examples from licensed makers of generic drugs - not dubious Indian drugs full of who-knows-what). Note that there is no remedy if you have used a generic.

nytimes.com/2012/03/21/business/drug-lawsuits-hinge-on-the-detail-of-a-label.html?_r=1&pagewanted=all

nytimes.com/2012/03/24/opinion/a-bizarre-outcome-on-generic-drugs.html

#11

This guy seems to have some tech skills which is good for us. I think he takes the cake as the most screwed out of all of us. Not that it’s a competition tho.

#12

oscar,

those were good articles, thank you. hopefully the lawyers will be able to get generic users some form of justice. i guess only time will tell.

thank you.

#13

This piece of research from 2006 may be of interest:

As we all know, the suspected mechanism for the development of gynecomastia following Finasteride treatment is that Finasteride blocks 5 Alpha Reductase converting Testosterone into DHT, leaving an excess of Testosterone in the blood stream. Excess Testosterone gets converted to Estrogen by Aromatase.
[eje-online.org/content/155/suppl_1/S107 - “Gynecomastia: Etiology, Diagnosis, and Treatment”]

The study found the above highlighted changes happened over ~4 months.

If taking Finasteride somehow results in extra Estrogen production in certain people, and there is extra Estrogen in the brain, this could be what is happening here.

One potentially useful fact: Introducing hormones to change from Female-to-Male had the opposite effect…

#14

Hi all, this is Mandi McKee. I am just now finding these threads again, sorry for not replying earlier.

Thanks for your supportive comments regarding me going public with my story. I’m going to reply further on the other thread about my story: propeciahelp.com/forum/viewtopic.php?f=29&t=6885&start=60 and am going to ask for feedback there regarding further interviews I have scheduled. As I took the generic, I had already come to peace with the fact that I likely won’t be able to recover damages - but given how my life fell apart in the 3 years after I quit Finasteride before discovering it was the cause - I felt I had nothing to lose, no legal recourse, and that going public would help me let go and try to move forward. That being said, I still feel I have debilitating brain fog issues which plague me every day, all day from the time I wake until bed - and its now 3 years 1 month since I quit Finasteride.

But as far as lawsuits over use of generic drugs, saying you cannot sue is not a given. And it surely isn’t justifiable for the courts to say generic drug users who have their lives ruined or die because of the drug have no legal recourse. That is a result of politics, not justice.

What happened, as discussed in the NY Times article, is the Supreme Court last year said that, because by law generic drug companies MUST COPY the FDA-approved warning label from the brand name drug, that as a result the generic manufacturer cannot be held liable for an incorrect warning label.

What that would logically suggest is that generic drug users (which account for 80% of all prescriptions in the US) would then have the right to sue the brand name manufacturer, since they held the responsibility for coming up with the warning label which is used on all versions of the drug, brand name and generic.

Of course I would have never taken Finasteride for hair loss if it weren’t for seeing Merck’s Propecia ads for years along with reading their warning label, which was the same warning on the generic version I purchased. (ie 2% of men may experience lower libido that discontinues after use) It seems apparent now that Merck had already updated the warning label in Europe to include the possibility of permanent effects even at the time I started in 2008. They didn’t update the US warning until several years later.

However lawyers I have spoken with agree that this will likely require another Supreme Court decision, as some states have blocked generic lawsuits, while others have allowed them, following last year’s decision.

So it will likely be 1-3 years before a case can reach the Supreme Court to have the matter decided.

#15

I found out today the recommended panel of blood tests listed on this site’s FAQ (propeciahelp.com/faq) will cost close to $5K.

Unfortunately I lost my health insurance nearly 2 years ago - just got a new policy this July but they are already trying to claim it as a pre-existing condition to drop me. Even then, my deductible is $10K.

My main concerns lately are food and shelter. As with many men I’ve heard from suffering the “brain fog” I haven’t had income in quite a while. I finally got to the point of deciding to apply for disability for the time I haven’t worked… however, PFS is not recognized by Social Security and even then, that takes 1-2 years to even try and get approved.

SO… my question is… who here has had the blood test panel recommended on this site’s FAQ?

What parts of that blood test were useful to you if any?

I’m interested to hear people’s experience with that series of blood tests.

I am meeting with a doc knowledgeable on PFS in a couple weeks. However even then, I may choose not to do the blood tests if it’s going to result in my insurance fwd’ing me the bill for $5K of tests, while I’m out of work, trying to pay rent and child support, and with the doc already telling me in advance “there are no known treatments or cures”.

For peace of mind as well as documentation, I wanted to take the tests - but that doesn’t seem feasible for $5K.

Any thoughts/feedback most appreciated…

#16

You need to schedule an appointment with a disability attorney.

#17

Yes… I have a disability law firm representing me as of 2 months ago.

Little help so far. Of course they have never heard of Post Finasteride Syndrome as with all the doctors in Tampa.

Now that I’ve shared my story publicly they will hardly take my calls. Just being honest. This is the plight of the PFS victim. I’m so over trying to explain this to docs and lawyers that I just stopped going to anyone who is not already knowledgeable on PFS.

I am traveling in 2 weeks to see a doctor who does know about PFS.

Now I’m in a Catch 22 of sorts. No money or insurance coverage ($10K deductible plus Aetna already trying to exclude all this as pre-existing condition) to cover the $5K worth of blood tests which the PFS-knowledgeable doctor will order in 2 weeks. The blood tests presumably would be very good for both peace of mind and a diagnosis for disability.

But to be honest for disability purposes, seeing as how PFS is not even a known or recognized condition for disability by Social Security, I think the blood tests probably are not as important as “secondary diagnoses” of things like depression, anxiety, memory impairment, ADHD.

Right now I’m just going to have to be honest with the doc about the lack of $$ for blood tests and try to get a diagnosis and disability letter based on my other symptoms emotional, cognitive and physical, of which there are enough related to PFS that I would think the blood tests may not be truly needed. Especially for $5K out of pocket.

#18

I feel your pain. My testicles are continuing to shrink and there is no end in sight. My eyes don’t focus as well and they are constantly tired. I feel like sleeping from the moment I get up to the moment I get in bed.

Is there nothing to be done? Is there any hope?

Suicide is not an option. I still have good moments even though I can barely get an erection and I want to sleep all day. I fight through it and focus on the positives. It could always be worse. But this is pretty bad. This stuff has wrecked my body.

I played collegiate ball and could have sex all night. 4 years later I can barely get out of bed and can barely get a soft erection. It’s a sad story.

I got my finasteride from a local pharmacy. It is not propecia, but their own blend. Could I file a lawsuit?

#19

You need to discuss this directly with an attorney.

#20

New post:
mandimckee.com/2012/08/23/how-finasteride-alters-brain-chemistry-from-male-to-female/