Thats for sure!
concerning mandi is 100% secure. the value is incredible.!!!
I’m just glad he’s working hard to get the word out to as many people as possible.
‘So much happening. Next week, a European TV program is coming to spend 2 days with me. My real life in Tampa. (Girls… there might be a going out night!) Interviewing me and my ex-wife. Second part of the interview will come next month, meeting with doctors who specialize in this Post-Propecia Syndrome, other victims, and traveling to NJ to talk to lawyers and confront Merck. Girl power to the rescue =)’
Props for mandi, but that is a oxymoron… No docs truly specialize in PFS or even know much about it for that matter.
Hi all - this is Mandi McKee, the subject of the NY Post story. Sorry for my late reply, I am just now discovering this thread on PropeciaHelp.
There were a couple other threads here including my own story I had shared. But I am going to reply on this thread moving forward. But to start, I wanted to post in below my reply to a comment on one of the other threads. It’s below.
But first let me copy in this comment from my Facebook page today. Reason is, I am open and encourage anyone to comment as I work on putting together a FAQ today and this evening for the producers of a national television interview I (and my ex-wife) will be giving live in mid-September. I will post exact dates and details closer to the program.
Regarding my sexuality - many of the original stories misrepresented this, but I have been open in all interviews at that time and since that I did have a BRIEF period of sexual exploration when I was younger (early 20’s), during which time I determined I was NOT gay, may have had slight bisexual tendencies, but that I liked women… and I moved on. Got married for 10 years, had a child. I never thought about that again until after taking Finasteride. So yes, it may have been a “spark” on an existing gasoline tank as one commenter here said - however, I was strong, athletic, and happily married at the time I started Finasteride. However after a year of dealing with complete loss of not only sexual ability but seeming complete loss of sexual desire by late 2009, I began to think to myself that “I must have been right”. After my marriage ended in 2010, I explored again my sexuality - and determined AGAIN, this time in my late 30’s, that I am NOT gay. However I did begin to accept that I felt transgender, and went through all of 2011 severely depressed about confronting that, thinking that must have been the cause of all my life woes and physical depression and symptoms. Anyway, I continue the rest of my story in the comment below.
But I want everyone here to know that I am going on the assumption that I will never see a dime from this due to my use of the generic. That being said, my only motivation for continuing to talk publicly is to get the word out about all the horrid things related to Propecia. For that reason, I welcome input and comments. Don’t worry about offending me - I wouldn’t have shared my story if I didn’t expect that, but I am operating on the basis that I know everything in my story is true. I would never go on national TV if I didn’t know that. Aside from being a software engineer and internet entrepreneur for 15 years, prior to that time I was a pre-med student at the U of Virginia. I did the whole pre-med curriculum, focused on genetics as my major, and worked in pharmacology research labs for 2 years. Sharing my story is helping me in a way to break through the depression and brain fog because I am truly interested in the science behind this, not only because I want to get myself healthy no matter what it takes, but because it is simply unbelievable how something so wrong can continue going on in this country without Merck even acknowledging it.
I also understand transgender-ism isn’t well understood, or accepted. That’s fine. But I will tell you for me, I have concluded for MANY reasons - including all the science and testimonials - and including the fact that transgender patients taking Finasteride for M2F therapy don’t seem to be affected by PFS or brain fog - that I believe that if I decide to continue with transgender hormonal treatment to completely remove testosterone from my body - that it will cure the brain fog issue and other anxiety related symptoms. I believe that is why transgender people are not affected by PFS - it’s b/c they also take another drug to completely block out testosterone. It’s the body’s inability to USE testosterone in PFS that results in testosterone becoming like a poison to the body, resulting in the brain fog, anxiety symptoms etc. That is my theory, and I think it’s right. I understand that doesn’t “cure” PFS for men who do not want to become transgender. But the transgender people I have met who use Finasteride say they love it, would not want it off the market… it gave them the results they wanted and they don’t seem to get PFS.
I’m off to pick up my son from pre-school… his LAST DAY before starting kindergarten next week! I have to give so much kudos to my ex-wife for not only being supportive of me, and of me speaking out, but of helping us to raise our son from the time he was 1 year old, when I started Finasteride - up to today with him starting kindergarten next week. The past few years were hell for me. But I have survived and sharing my story was in a way me saying “F-U” to staying stuck in depression over this thing for the rest of my life.
I will check back on this thread this evening.
from my Facebook today:
“I’m not going to be talking about Propecia/Finasteride forever, in fact I look fwd to not having to… but today, working on a master FAQ to give to producers for a national TV interview next month with the best-est journalist in the biz, complete with all the facts, studies, my story, links regarding Propecia, Finpecia (the generic Propecia I took produced by Cipla in India), the US FDA’s inspection/approval of Cipla’s Indian manufacturing plants since 1985, the FDA’s “non-enforcement rules” allowing US citizens to order small qty’s of overseas drugs for personal use, Propecia’s conflicting use as both a male hair loss cure and M2F transgender treatment, Post-Finasteride Syndrome’s “brain fog”, how it medically relates to Alzheimer’s Disease and why transgender patients don’t get it, and the US Supreme Court’s ruling last year preventing users of generic drugs - which account for 80% of prescrips in the US - from having any legal recourse - SOMETHING is not right with this picture. I already crossed the line of going public and will be glad to do what I can to help increase awareness of this mess - stay tuned, I’ll be posting the same FAQ doc to my blog. If Merck, Cipla, and the FDA want my opinion, they’ve messed with the wrong person - I don’t give up! Especially when I know the facts are ALL on my side =)”
my reply on another thread:
re MDG’s comment: "I have to believe that there are so many more men suffering from this than anyone ever imagined.
If this is what happened to me, it took me 2 years to make the connection."
MDG I stopped Finasteride in July 2009 after taking it 9 months for hair loss. I was also heavy into body building for close to 10 years.
MDG did you get your blood test results? I am having a full panel done in a couple weeks. It sucks to have to pay so much $$ for these tests when the docs say there is no known treatment and I likely can’t even sue, and have no health coverage or money due to my PFS problems.
After quitting Finasteride, It took me 3 years to make the connection including to my completely debilitating brain fog.
In those 3 years my life completely unraveled. Marriage ended, career as software engineer fell apart, depression, anxiety, suicidal thoughts, bankruptcy, sexual identity crisis, gender identity crisis.
I ended up lost, isolated and depressed most of 2011. In December 2011 I pulled myself up and began transgender counseling, feeling that was my issue. Joined a transgender support group in early 2012. Upon making an appt w/ a transgender specialist MD in May 2012, I learned that the 2 most popular drugs given for M2F Transgender hormonal therapy (men who wish to become women) are Spiro and … you guessed it … Finasteride. My jaw dropped on the floor.
In the weeks that followed I discovered the Propecia hunger strike, suicides, the studies coming out, and was told my a doc everything I had experienced was linked to my use of Finasteride in 2008-2009.
I got in touch with a leading law firm handling the class action. Their full time medical doc who had interviewed close to 1,000 affected men did not even know that Finasteride is used as a primary treatment for M2F transgender therapy until I broke the news. I likely have no legal recourse b/c I took the generic version and the court system in this country protects corporations, excluding legal recourse for generic use, at least that is how the Supreme Court has ruled thus far. I now have personal transgender friends from my support group I joined earlier this year - WHO TAKE Finasteride - and are so happy with it, they say they wouldn’t want it taken from the market. It gave them the results they wanted.
I have debilitating brain fog/memory issues, which is now no surprise to me now that I have read the Post-Finasteride Syndrome blocks the same enzyme in the brain which is blocked in Alzheimer’s disease. I am broke and struggling to even qualify for disability as few docs even know of this condition much less Social Security.
SO the question is… why do transgender people not have these horrid side effects of brain fog, etc? I believe I know based on my crazy 3 year struggle with all of this. It is because transgender people are also prescribed another drug that completely knocks out testosterone.
Post-finasteride syndrome results in the body’s inability to USE testosterone by inhibiting conversion to DHT. The result is testosterone becomes like a poison to the body, resulting in braind fog, memory issues, anxiety etc, and the only thing that helps is reducing it. This explains everything I’ve read from all victims - including many that say “fasting”/losing weight helps with the brain fog. Of course, because “fasting” shrinks muscles, which reduces free testosterone in the body.
I had some slight bisexual feelings when I was young, but moved on from that having felt like I liked women much more. I got married for 10 years and have a son. However I think it was those feelings when I was younger that - in the 3 YEARS after quitting Finasteride that I had NO IDEA what the hell was happening in my life, I came to the assumption that “I must have been right when I was younger”. However I quickly determined (again) that in no way did I feel gay - but that led to me accepting that I was feeling transgender in late 2010/early 2011 - emotionally, cognitively, and physically. At that point I became near-suicidal for 4 months, no money, living without electricity in my loft from January-April 2011. I finally pulled myself up after realizing “checking out” could never be an option for me… and the fact I was a parent… I decided that I was transgender and that must have been the cause of all my woes. That led me on a 12 month path of coming out slowly, therapy, support groups etc from April 2011 - April 2012, before all these dots started connecting in May 2012 and I felt like I had been “Punk’d” or on candid camera when I learned I may be prescribed Finasteride for transgender treatment. I had stopped taking it less than a year before my marriage ended.
Anyway, with no legal recourse b/c I took the generic, feeling totally screwed over and waking every day now to spend the entire day unable to focus, with extreme fatigue issues, sleeplessness, having lost over 40 lbs of muscle, and feeling unable to work… I decided to just share my story publicly, which I’ve done here:
I was going to try and get a doc to prescribe me Provigil to see if that would help with the brain fog, but just read on this site today another post talking about how Provigil has its own share of nasty effects similar to Finasteride. If anyone has any experience or rec’s for treating the brain fog issue successfully, I would surely like to hear them.
Right now, I am hanging in another 2-3 months, getting my blood work done, etc. If I haven’t seen improvement in that time, I’m moving ahead with further transgender hormonal treatment to knock out my testosterone altogether. Based on all the science, testimonials, everything I’ve read - I am firmly convinced that knocking out my testosterone will solve the brain fog issue.
Can’t wait for your national televised interview. Good luck.
I don’t want to turn this into a theory thread but are you saying you think our bodies “forgot” how to utilize testosterone?
Someone else may back me up here but I don’t think I am theorizing when I say THE main action of both typical finasteride use as well as PFS (according to all science and studies published) is the inhibition/blocking of the body’s ability to convert testosterone to DHT, which is the usable form.
You can go straight to wikipedia.org and search finasteride and read that… it’s the basic mechanism of how finasteride works and also the main problem in PFS, separate from the additional neurosteroid issues … the “theory” part I mentioned is not testosterone blockage in the body, that is accepted widely as far as I know (anyone correct me if wrong) My “theory” which is based on the science is the additional anxiety/brain fog issues are brought about by excess testosterone in the body which cannot be utilized, hence why transgender patients who have 0 testosterone don’t get these problems from finasteride…
Well, the drug is documented to inhibit neurosteroids as you correctly pointed out, and as a result, causes anxiety and depression in susceptible patients (ie, reductions in 5AR-derived metabolites THDOC and Allopregnanolone, respectively).
See here:
viewtopic.php?f=8&t=38
img2.tapuz.co.il/forums/1_125030674.pdf
download/file.php?id=260
drproctor.com/propecia/propecia.pdf
That said, steroid users (elevated Testosterone) have been known to exhibit depression, moodiness, rage and anxiety/paranoia at times. Thus perhaps a combination of elevated Testosterone levels with neurosteroid deprivation compounds the issue.
The reason some men get side effects and others do not likely comes down to genetic predisposition. Researchers are calling for men to be genotyped before men use 5AR inhibitors so they can determine proper drug choice based on potential efficacy and response: viewtopic.php?f=8&t=1407
Further to this there is a hair loss test based on an individual’s genetics that evaluates Finasteride response, based on androgen receptor CAG repeats: hairdx.com
I love your blog Mandi. Can’t wait to see you on {REDACTED}
…
as much as you dont believer her/him…some people will never believe us. get over it
I’m not heckling nor suggesting that sexuality was under question. But one does not simply have the desire to cross dress overnight. Become so comfortable with there sexuality as a transgender. I should keep my opinion to myself, it’s really irrelevant. Apoolgies.
Maybe not overnight. But over 3 years of being basically on death’s door unable to move forward or comprehend what the hell was happening to me, yes, I feel lucky I found a way to move forward. I’ve already said publicly maybe I had a genetic predisposition or something - but I wouldn’t be speaking out if I didn’t feel this was a direct cause. I mean look at the diagram in the post today on my blog. Finasteride and estradiol are the same 2 drugs all the people in my transgender support group take. I haven’t taken anything other than the finasteride for hair loss stopping in 2009. I had never cross dressed in my life until 18 months after quitting finasteride. When I did, to my surprise, I got this feeling that I felt more natural - in the way my body and mind was today, not the way it had always been. And my body and mind are nothing today like they always were pre-finasteride.
The science on my blog post today makes sense to me but it’s not encouraging. I don’t expect everyone to believe me… I have no reason to need or want everyone to. The important thing is if you take the transgender away, I still have all the effects from PFS just like everyone else on this site. All I’m doing is sharing a true series of events that happened to me over 3 years. I found it too unbelievable to keep to myself and evidently quite a few people agree.
But it doesn’t help anyone to have thousands of people suffering in silence. More people need to yell, loudly.
It is fact that finasteride effects 3 hormonal pathways, I do understand that you think finasteride made you feel feminine or less of an Alpha. I wasn’t trying to heckle you by the way, but I think you being comfortable as transgender suggests that it was always an underlying fantasy and not the direct cause of PFS, of course I am sorry to hear you suffer the same sides of us all. I was just addressing some of the sensationlism that comes from your blog.
I’m glad to hear you are comfortable and knowledgeable enough on how everybody operates that you are able to make such skilled judgments. Do you do tarot readings too? Msg me!!
Are you happy that the issue is receiving attention through me or not? Stick to what matters. Why do I bother you?
You are not right, but I presume you’d prefer to keep your comments to yourself.
I encourage anyone with a desire to vent to be open and honest with me… don’t worry I’m a big girl so don’t hold back. =)
As I have some large interview(s) approaching, I wouldn’t mind at all debating anyone’s doubts about my story, right here in this forum.
I would have never cross dressed or come out as transgender if I did not take Finasteride. PERIOD. Every symptom, testimonial, study, research paper, interview, and scientific explanation points exactly toward verifying what is hard to believe - which is my story is the WHOLE truth - nobody was more shocked by my story than me, which is exactly why I felt the need to share it publicly.
I have read everything. If you disagree with the above, bring facts. Maybe there are parts of the story I need to clarify or explain better on my blog which I’m not aware of. Or maybe people just like to judge others because it makes them feel a little better during their day but they’re too lazy to read any of the facts past the first paragraph.
=)
- mandi
Don’t worry about propeciashiz. He’s a 21 year old kid from Australia. He didn’t even want to show his face in a YouTube video that has some 75 views. We are all very thankful you are telling your story to the world. Can’t wait for your next big interview. When will it be by the way?
Soooooooooooooooooooooooo true.
Let me try and explain this a little more clearly:
First off, someone asked me what if a cure is found and wouldn’t I like to have my old self back.
My reply: “yes i would rather have my old identity. it doesnt feel at all possible. i do not feel like the same person in any way that i was before. i liked the person (better) who i was before. but i am not that person now, due to finasteride.”
Mine is not a story of a guy who sat around fantasizing and secretly cross dressing for many years only to be so thrilled to finally come out as transgender.
I was with my ex-wife 10 years. I never once wore a single piece of her clothing, or any women’s clothing, while I was with her or at any time previously in my life.
I have stated publicly, in interviews and on my blog and Facebook, that I “might” have had a bisexual tendency but that is based only on a brief period of exploration when I was young that quickly resulted in me determining I liked women more. I didn’t have thoughts like that again until 2009, months after starting Finasteride.
So, #1 you are right that all of this should be irrelevant, but it’s not for 2 reasons: that’s how society works, and the science validates my story.
#2, I want to give you an idea of the time period in which I accepted that I was -now- feeling transgender, in early 2011. This was not a happy time of friends and parties about accepting myself.
My story at that time sounded very familiar to the posts on this board by user “paximperia” who sadly is no longer with us. His description of “pacing back and forth across his house for 3 days” sounded VERY familiar to me. In fact, in May of this year it was hearing about a Propecia suicide in the news which originally attracted my attention to learning about Post Finasteride Syndrome. I was always the most optimistic, power-of-positive thinking type “A” person before. I mean I had a 40 employee business at age 26 and passed out copies of the 7 Habits of Highly Effective People. But now I have the vivid memories of having confronted suicide several times. So when I saw that someone had killed themselves after taking this drug, that caught my attention.
I was suffering anxiety/panic attacks and had never experienced even a mild panic attack before around a year after I quit finasteride.
By early 2011, I was living without electricity, having panic attacks daily, no money, job, or health insurance… I hardly got out of bed for months. I’d have these panic attacks that felt like my whole energy and personality just being sucked away. They were very intense - I’ve had probably 10 calls to 911 and 5 visits to the ER for panic attacks since the start of 2011. I have learned to control them better and this year it’s only happened 3 times, although it can still happen but I have just learned to prevent it better. I did have one last month sending me to the ER.
During these attacks I would look in the mirror and not see myself looking back. I was changing. Part of me was just disappearing.
I was depressed for so many months… approx Jan-May 2011 - after finally having a conversation with myself about suicide for the 3rd time - something clicked in my head - determination - to live - to be happy - to be the best parent for my son. I decided that the answer to “that question” would ALWAYS BE NO. That was my decision.
From there it became a matter of really trying to connect with what I needed to do to pull myself out of depression. Or at least severe depression.
By 2011 I was experiencing this “tingling” sensation over my scalp and left face - I didn’t know what it was but I did tell my ex-wife at the time it literally felt like I had a chemical burn in my head. It felt like the hangover that wouldn’t go away. But over time it began to clearly feel like SENSATION COMING BACK in my scalp and left face, that I did not even realize had gone away. The feeling was strongest around the crown of my head in the hair follicles. All signs that Finasteride caused that.
By 2011 it had been over 2 years that I had felt absolutely no connection between my mind and male body parts. Still true. Over time this had gotten to the point where in my head is starts to feel like it’s not there at all. Anyone experiencing those types of symptoms for not months, but YEARS, is at some point going to ask themselves if they are feeling like a woman.
That’s how I asked myself. In desperation. trying to pull myself from anxiety and depression.
But the answer was YES - I was feeling like a woman. That would scare the hell out of me and I’d spend another few days trying to get anxiety back under control. And then I’d confront it again - and YES - felt like a woman. Another round of anxiety. Over and over and over, for 2 years. After a year of that I told my ex-wife and started counseling.
Now it may be because I was a pre-med Biology major at UVA who specialized in genetics, worked in pharmaceutical research labs for 2 years and used to win awards for my research projects before finasteride decimated me. But the entry I posted to my blog yesterday (mandimckee.com/2012/08/23/how-finasteride-alters-brain-chemistry-from-male-to-female/) seems like there could be no more clear scientific explanation of what I was experiencing last year with the severe depression and anxiety. The male parts of my brain were physically shrinking to resemble female brain parts (see my blog post above) after being doused in the female hormone Estradiol for months if not years thanks to Finasteride. Every time I would get depressed about what was happening to my mind and body (from Finasteride), as explained in my blog post, my body would attempt to make the chemical Allopregnanolone to combat the depression, which is the body’s normal response. However, Finasteride blocks that from being created and instead creates Estradiol, the most potent female hormone which is the primary drug, sometimes in combination with finasteride, that transgender men take in order to become women M2F.
So unlike my transgender friends, I was (and likely still am) receiving Estradiol straight from my brain’s misguided attempt to control depression and anxiety, instead of taking Estradiol as a pill which most transgender people take.
The depression and anxiety would go unchecked because the body keeps trying to make more Allopregnanolone but isn’t getting any, all the while creating more and more female Estradiol. This explains the trips to the ER and calls to 911 with uncontrollable anxiety attacks - your body’s mechanism to stop anxiety is blocked by Finasteride. This creates a cycle of increasing stress/depression resulting in more female hormones meaning more stress/depression… UNTIL eventually, after MANY MONTHS of the worst depression and anxiety imaginable, I finally said STOP - OK - I FEEL LIKE A WOMAN, I AM OK WITH THAT, ANYTHING TO PULL MYSELF UP FROM HERE. And what do you know, I’d feel better. Over time, even up to today, I still have to control myself from letting me slip into worry or sadness about things too much, because I have learned that my body doesn’t deal well any more with stress.
When I looked in the mirror I saw a woman. When I dressed like a woman, my depression and anxiety would let up. Not completely, but better. When I started to accept that I was now a woman, my depression and anxiety started to get better still.
It gave me hope again to be able to visualize a future where I could still prosper and be happy. Or lat least to be someone capable of moving forward, at all.
And that was all over a year before I connected any of what was happening to my prior use of Finasteride.
I will be perfectly honest… I feel like I may have been recovering a little better BEFORE discovering this link to Finasteride and PFS. Before, I thought all my symptoms were caused by just being depressive about my sexuality. I was “in control” of my recovery, although it hadn’t been going too quickly. That was before I discovered thousands of other men had all the same symptoms after taking Finasteride. Seeing scientific evidence that suggests you may have symptoms that are irreversible isn’t a real mood booster for anyone.
So I am really sharing my story because #1 the facts are too unbelievable for me to digest alone and #2 after sharing my story, I plan to put it in a box and move on with life the best way I can, not looking back.
So this whole post should probably be in Webster’s under TMI (too much info). But that is the situation I am in, people have questions, and I am more than happy to answer them.