Lol keep it real guys.
No no being gay is cool with me, its 2012, just use protection guys.
Take some comedy lessons because your jokes keep failing.
Hi all, Mandi McKee here. So. I (and my ex-wife left the show yesterday feeling disgusted and betrayed. After having some time to calm down and get back home and watch clips of it, I got over the butt ugly sweater they made me wear (lol) but I did at least somewhat accept that some good came from it in terms of getting the message out about PFS. I had intended and expected the show to be science-centric. I had told them 3 weeks ago I didn’t want to do it unless they had an expert and discussed the studies, that I did not want it to be all about me. Well on that note they misled and tricked me. It turns out the main producer (who invited me to appear on the show) told me privately Merck had killed her father via Vioxx. He had knee pain, went to the hospital… they gave him Vioxx, and he had a heart attack and died.
It seems AC Live was brave enough to go after Merck… BUT… when it came to protecting Anderson’s personal reputation from criticism by the National Council for Transgender Equality, they freaked out. [redacted by moderator]. They sat there for probably 90 minutes, different producers coming in, sometimes more than 1 at a time, telling me the rules have changed, oh they changed again, oh the questions have changed, then… we can’t have you mentioning any science… Dr Irwig had already been cut from the show, which was a red flag before I went to NYC.
10 minutes before airtime, I did literally tell them I’d prefer to not do the show and go home if I was going to be forced to say I was transgender since birth. They were asking me directly to say that, to appease the transgender critics. That would have defeated the whole point I spoke out in the first place. I want to keep the focus on the effects of PFS. They got me worked up emotionally prior to airtime getting me to talk about in detail my panic attacks, suicidal thoughts etc, saying they wanted me to show the emotional side of this and not the science.
Anyway, one thing I have learned from dealing with my PFS symptoms this long is that stress/anxiety leads directly to increase in brain fog. This is why I have trouble getting things done, working etc… after my months of panic attacks last year I trained myself to maintain a low stress level, but when I do get stressed, I get spacey.
Anyway, that was how I felt on stage. I didn’t plan to talk about the symptoms in such emotional detail, but they got me worked up and that’s what came out.
On a positive note, I will say among the positive feedback I’ve heard is that I was believable - I think people saw the emotional side of somebody telling the truth about something that was a very difficult period of my life to get through. In a way even if I felt it was at my expense, I do think it achieved increasing awareness of the dangers of Finasteride. As my ex-wife put it, there were probably thousands of wives talking to their husbands over dinner last night about Propecia.
The criticism from the trans groups has been very annoying. The Director of the trans group who slammed both me and Anderson the day before and called for the show to be cancelled later sent me an apology… via private msg of course. I sent her a bunch of reasons I could not accept her apology, but later told her if she was sincere, she needed to issue the apology in the same public manner she issued the slander. And that she owed Anderson Cooper an apology as well. Of course, nothing in reply yet. But if she doesn’t reply, I plan to post her private apology to me publicly myself. =)
The resistance from the trans groups and trans people in general has been so much I can hardly describe it. I’m going to post a message below I received from a transgender woman, someone who knows me personally who I considered a friend and maybe still do. But this shows the level of ignorance. I find it insulting her comments that “hey, you’re probably the only one or a small minority.” It would be helpful if I speak out further to have more people from PH at least voice some comments on my stories or Facebook. Even if you don’t support me personally, it’s still a venue where the public is evaluating and learning about PFS, and if only a couple other PFS victims speak out amidst 1,000’s of critics, the message gets drowned out.
Here is the message from my trans friend I referenced in the post above. So ignorant, I don’t even feel like replying to her. One thing I’ve learned is I can post facts and science all day long and 99.9% of people won’t bother to look at it and still speak from a perspective of pure idiocy and judgment.
Hey Mandi. This is one of those messages I send you with all due respect because I am someone who likes to keep the peace. First I guess first want to say that I read the post that I'm referring to three times just to make sure that I was getting it right. I feel that you are alienating the trans community on some of the things that you have to say. Obviously, I can't speak for all of us, but this is how I feel anyway. I don't think that 'us' people are ok with any suffering or suicides. Like I mentioned to you before, this drug is a VERY IMPORTANT part of our hormonal regimen. With that in mind, we have way too much suffereing and suicide in the trans community right now and so many other issues that we deal with EVERY day. Work, family abandonment, medical standards that are not fair for those of us who knew from near birth that we were female, not to mention suicide and suffering... I think we are fighting our own fight every day that we open our eyes and step out into the world. That doesn't mean that I don't care about the suffering of post- finasteride syndrone sufferers, or the suffering of the children in Africa, or whatever. We are fighting way too many battles right now, I don't think it is up to 'us' to go to war with a company that provides us access to a drug that helps us. Yes, I believe 100% that this drug should include a warning label and men who wish to use it for hair loss should be told by the physicians the pros and cons and possible side effects. I have looked at both side of the story and found that in 2007, Merck claimed to be selling more than 1 million prescriptions for finasteride. I understand that there are many people like yourself Mandi that are experiencing pfs, but out of a (million) people, how many of them do you think have considered changing sex or turning gay, or couldn't perform their jobs anymore. From what I can tell, this thing is a very real deal but can affect different people in different ways, just like many other drugs. In many of the posts I was reading, the men had nothing but good things to say about the drug (men that had been on the drug for 10 years+, and even men that had been on it and stopped taking it). In many that I read on the pro side, men only noted limited sexual side effects I know there are men who have bad things to say about it too, but what percentage is that of those who have taken, or are still taking it? 50/50? 15/85? 1/99? Anyway, I do understand your want to get out there and try to keep pfs from affecting anymore men because of what you have experienced. I give you props for that, but don't throw 'us' under the bus for not joining in this battle that's going on. Almost all of us have known from earliest memories that we were female inside, so we can only imagine what it is like in your situation. We don't know, but that doesn't mean that we don't care. Just please be careful who you accuse of not helping out because then people won't care anymore.It seems unfortunate that transgendered people were so offended by the segment, but I think there is a part that is being overlooked and wasn’t expressed in the interview (be that the fault of Mandi, Anderson, Dr. Jacobs, the segment producer - I have no idea). And that point is that it seems like Mandi’s response in attempt to treat Post Finasteride Syndrome was to continue transitioning. The drug has undoubtedly caused many men feminization effects which are devastating - and I don’t think Mandi meant to put the focus on the fact that she is no transgendered so much as the fact that this is what she felt she had to do as a result of the side effects of the drug.
It was picked up because its an attention grabber and a headline-getter… which is exactly what has happened.
The idea was to shed light on the devastation of PFS not upset people who are transgendered. Lets remember this.
There’s an error in the software I take it.
…
Awww, get over yourselves. Since when is Mandi representative of the entire transgender community?
If I, an Irish male in his 40s who lives in Boston and went to Princeton, express an opinion on TV, am I speaking for ALL Irishmen? For ALL Bostonians? For ALL 40-something males? For ALL Princeton grads?
No, I am merely speaking on my own behalf. As was Mandi. Hers is just one story.
If y’all want to tell YOUR stories, call Anderson Cooper and try booking yourself on his show.
Meanwhile, check out the Daily Mail story on Mandi:
dailymail.co.uk/femail/artic … ds-newsxml
Now look at this comment:
“This might be an extreme case but I can tell you that Propecia / Finasteride is poison for many men who have taken it and it can leave you with permanent side effects. I took Propecia for 4 years until I stopped taking it 8 years ago, after gradually developing gynecomastia over the 4 years. I had a liposuction operation done privately to make my chest return to normal but other side effects I suffered have not gone away. Anyone thinking of taking this poison in order to save their hair should do some research on the side effects. You¿ll get a shock.”
By going public with her story, Mandi opened up a global dialogue about the dangers of Propecia. Hopefully, as more and more victims come forward, that message will resonate until no one on earth ever takes the perilous Merck drug it again.
Mandi McKee again (can’t figure out how to change my PH username lol)
A message I just rec’d via Facebook:
“I also took Propecia beginning in Nov. 2008, to Jan. 2009 and I’ve never recovered. I recorded your appearance (I hope) on AC360 today. will watch later.”
Interesting in that it’s the same month I started Finasteride but I took it 9 months.
Regarding ihatefin’s comment above:
“I don’t think Mandi meant to put the focus on the fact that she is now transgendered so much as the fact that this is what she felt she had to do as a result of the side effects of the drug.”
This is very true. The whole transgender uproar has taken me by surprise since I shared my story. I have never questioned that people are born the way they are. However that does not mean that environmental factors throughout life can’t change us, especially in the age of man-made chemicals that do things to our brains and bodies that even the experts don’t fully understand.
Mara Keisling, the trans Director for the National Center for Transgender Equality who called the AC show the day before and asked for it to be cancelled, caused the show producers to freak out to protect Anderson’s reputation having just himself come out recently.
I asked Ms Keisling to comment on this quote below. She replied that “she is not a scientist.” I told her that if someone in her position cannot even issue opinions on scientific studies that I don’t believe she deserves to be in that position.
the Wikipedia page for Estradiol: “Recently, the volumes of sexually dimorphic brain structures in phenotypical males were found to change and approximate typical female brain structures when exposed to estradiol over a period of months.[15], suggesting estradiol has a significant part to play in sex differentiation of the brain, both prenatally and throughout life.” Focus on the THROUGHOUT LIFE part.
Does that mean the brain can change back when Estradiol is removed? I personally would presume it can. I also venture to say that I have come to the firm belief that this is the cause of the brain fog… I believe during the “brain shrinkage” phase which I think I was in 18-30 months ago, the deletion of neurons in the brain causes the severe anxiety. I feel that the brain fog phase which really started for me around 6-12 months ago is quite possibly regrowth of new neurons occurring signifying those areas of the brain may be returning to “normal”. I think the science backs that up. But I also think it’s a positive way to view things which is also equally important.
But back to ihatefin’s comment re: “this is what she felt she had to do as a result of the side effects of the drug.”
That is the 1 part of my story I have never stated publicly. You see by April of this year, it had been nearly 3 years since I quit Finasteride, 2 years since my marriage ended, and 18 months since I accepted I was transgender. It had been 6 months since I started transgender counseling and told my ex-wife and close friends and family I had concluded I was transgender. I had joined a support group and made friends.
And then in May I learned of Post-Finasteride Syndrome.
OMG was my reaction. You have to be kidding me. The thing was… I came out as transgender in the hopes, and based on the feeling, that doing so would help me get over my ongoing anxiety and depression which was ruining my life, if it hadn’t already.
The thing was, by May when I learned of PFS, I had begun to accept that coming out as transgender had not helped me recover or move forward the way I’d hoped.
However, people in society do not come out as transgender and then go back. That just doesn’t happen. Right?
Well, that thought scared the hell out of me. And that takes a lot in somebody who very closely overcame suicidal thoughts in early 2011 on several occasions. I could hardly comprehend that everything I had gone through could have been a waste, a trick, side effects from a drug for baldness I quit 3 years ago when I was still married.
So there are underlying reasons for me wanting to share my experience publicly. I have laid out the facts and created a plausible avenue through which I could return to “the old me” in the future without people in my personal life just viewing me as plain crazy the rest of my life without knowing the first thing about PFS.
However. To say that I know that I have given myself that option by explaining my story publicly, is not to say I have decided that or that is how I feel. Those things are things I’ve had to be evaluating in only the recent 2-3 months after I learned of PFS. I am sure everyone on this board can understand when I say learning of PFS added a layer of complexity, as my tg therapist calls it, to my story. In other words, it’s made me re-evaluate the past 3 years of my life and it has added a lot of doubt of whether I was on the right path.
Unfortunately as I’m sure you all can also understand, having symptoms of PFS does not make it easy to answer the questions above. Am I getting better? Or not? And what would I be returning to? The old me? Or a hermaphroditic version? Can I live that way? Or will I return to suicidal thoughts and depression?
To be honest, I would say that I still feel I am transgendered and will likely move forward with tg hormonal therapy. Did PFS play a part in that? How could it not have?
However I am not anywhere near a final decision on that. PFS has made the decision very much more difficult. Coming out as transgender is difficult enough without PFS, with a 40% overall suicide rate, a statistic I have read and heard 3 or 4 times now. My love for my son and my desire to be the father I had envisioned being for him has a good shot of winning the battle in my decision making. However, unfortunately I always return to the fact that that father I envisioned being for him isn’t here now. I don’t feel the same inside or out. Any thoughts or attempts for me to “go back” to who I was always, still, result in me going back to not who I was 5 or 10 years ago, but who I was 2 years ago before coming out as transgender but when I already had PFS without knowing it… a depressive anxiety ridden slump.
So there’s a little inside view from my perspective.
However I want you all to know that Mandi’s publicity on this topic is primarily for the benefit of all those on this board. So if you have ideas or suggestions for anything further I can do that would be helpful, please don’t hesitate to tell me.
The AC interview was a lesson on many levels for me. Each time I do this I go through a brief phase of saying “that is it” but then I remember that we are fighting something very worthwhile here and as long as it affects me personally, I will probably keep talking publicly.
=)
Mandi
Mandi,
In my opinion you deserve a lot of credit for putting PFS on national TV in USA. I don´t see why this should be so controversial for the members of this forum. We are talking about a drug that has been shown to cause feminization symptons in various degrees in men. And that includes the brain. Perhaps your brain has been much more affected in that aspect than ours. Perhaps there was a trigger in your unconscious mind that you were not aware of before Propecia. Who knows. But in my opinion that does not make you less credible or less important to talk about PFS in public. Viewers are smart enough to understand you re talking about your case and Dr. Jacobs had the opportunitty to talk about PFS on TV which is a great bonus for us.
Viewers of the show had to learn what PFS is in order to decide if they believe you or not. Even if they do not believe you… we have the benefit of having all these viewers researching a little bit on the internet to know what Propecia could cause. You have made people talk about Post Propecia Syndrome and that is a huge step foward. This fight is made of the sum of individual steps from all of us. Each one contibutes the way one can and according the individual experience with the drug and own background. You did your part… and on national television. Doesn’t matter if it wasn’t the way you wanted, it was the way possible.
I have read many comments on articles about your interview. While most focus on the transgender issue, there are quite a few people who wonder if a drug could do this, like this comment:
“I don’t know. It seems to me, that while many people are born this way - and I have absolutely no issue with anyone’s gender, or sexuality, or kinks… that it’s quite likely that the right drug could make you feel that way too. The right combination of drugs can make you feel anything!”
So, i thank you for your effort and wish you the best luck. I understand what you say about trying to move foward as there are no treatments available. You have found your way of moving forward. If that works for you, and if you are happy, what people think should not matter. I just think you need to have some therapy to make sure you want to continue trasitioning as it is a one way road. Regarding your son, i honestly believe that if you show your son how much you love him he should be fine. Just explain the whole issue to him with more details when he is old enough to understand.
So thanks again, and good luck!
Treatments? 90% of the med community thinks we mentally disturbed… I cannot believe this effect as drastic and powerful as it is isn’t more common it’s insane.l
There is a concept in psychology called the reaction formation in which people respond to threatening feelings or ideas by forming a stronger and opposite viewpoint. This requires that we need to be very delicate in how we go about explaining PFS to other people so that they do not respond by being partially or completely against us. This is something that may undermine our credibility and something that everybody who speaks for the media should take into consideration.
Thank you for offering to help. I have a degree in Psychology and have conducted social psychological research. Psychoanalytic theory is pseudoscientific nonsense and there is no such thing as a “defense mechanism” or “reaction formation.”
Nice… I think that was a perfect example of the reaction formation. Thank you.
It is pretty foolish to think that any negative light shed on Propecia on a large scale is a bad move. The more bad press accumulates, the more people will be on board. Mandi did a great job.
Even if people are reacting in ways we may not want them to… the dangers of Propecia are still being discussed.
Nice job Mandi, we all thank you.
No we dont. I count 4 people.
Even Dr Jacobs, a ‘PFS’ doc, says Finasteride didnt cause this cross-dressing.
Oscar Wilde once said “Its better to be talked about than not at all”. But I just get a funny feeling that bad, misleading press and ridicule isnt going to attract the world-class researchers we need.
By the way, my ex-wife recorded the entire 2 hours behind the scenes prior to airtime on her iPhone with the producers coming in changing the rules, telling me what to say, me threatening to leave and go home, them going on about how they had to appease their trans critics, on and on.
Mandi, you’ll lose support here real fast putting down Dr. Jacobs. He’s a strong believer of PFS… And like SA said, the first doctor to say those words on national tv. He believes you suffered the symptoms, as well.
okay, i’ll take that back then. i was frustrated b/c i had been told several times dr irwig was confirmed for the show.
nothing i was told or agreed to actually happened. very disappointing.
the ironic thing is if the show had the balls to go ahead with the plan despite the trans critics, i think the science would have led to a much more valuable discussion, i was better prepared for that conversation, and the trans critics i think would have been pleasantly surprised that i am not challenging that i had already accepted prior to learning of PFS that I must have had a genetic inclination, I mean I said it right on my blog from the start. They just wanted to eliminate all references to science and I had already told them clearly weeks ago I wouldn’t do the show if that were the case. For that reason I refused to go on stage and say what they wanted me to say, which led to a stressful interview. Yes, I should have left. But the pressure of doing something like that for the first time got to me, normally I’m stronger.