New member, here is my story

Member Stories
#8

I guess it’s as good a time as any for an update. I went to a shrink who specializes in sexual dysfunction and he tried to help me to the best of his ability, but everything he prescribed either made me worse or caused my colitis to flare up. The medications made my intestinal bleeding so out of control I eventually wound up in the hospital for a week.

When I was in the hospital, they put me on prednisone to control the colitis. It worked for that, but caused all kinds of other problems. My face broke out like a loaded pizza and my sex drive went to zero. And when I say zero, I mean zero. No functioning whatsoever! On any level! My face swelled up and my joints began to hurt, and I experienced water retention. Prednisone is a horrible drug! I started at 40 mg, then every Thursday I dropped 5mg. It took 8 weeks to come off this crap and I feel like I’m really screwed now. I’ve been off since Thursday, but I’m a swollen achy mess and I have crazy anxiety and mood swings. I can’t wait until it’s out of my system.

So right now I am on no more medications, and I think I’m done with the shrink. I don’t plan on going back there because it’s nothing but trouble. This summer will mark the one year mark since quitting and things are a complete mess with no sign of improvement. I don’t know how you guys manage to live with these symptoms. When I am at 25% functioning, I can sort of function well enough to not be angry, but when things are bad, it is so hard not to panic and get depressed.

And the worst part is that we are all on our own. No doctor wants to help or knows how. There might be a cure down the road, but there might not be. And who can bear the thought of living like this forever?

#9

Well folks it’s time for an another update. I decided to get some help from either Crisler or Shippen and got on the phone with both offices. Shippen’s office could get me in on August 5th. They would need me to send a letter explaining my symptoms with a self addressed envelope so he could send labwork. I would also need to include a 150 dollar deposit for the appointment.

Crisler’s office could get me in almost immediately, so I decided to see him instead. His office wanted me to pay in advance, but was less effort needed on my part other than flying over there. All I had to do was print and fill out the Medical History and the Consent/Authorization to Treat forms from his website and then forward them to the office. I quickly filled out the forms and faxed them. I decided to take their soonest appointment and buy my plan ticket. The best way is to go to the airport in lansing, but the prices were out of control to fly in there from south Florida. I decided to land in detroit, rent a cheap car for 40 bucks and drive to lansing, which is about 80 miles or so. This way I could save a lot of money on my tickets. The hotel I booked was the Staybridge Suites Lansing Okemos to spend the night.

The plane flight from south Florida was quick and easy. When the plane was landing, I could see Michigan’s highways and could not spot a single foreign car. The detroit airport was huge! I was walking for what seemed like an eternity to get to the shuttle bus that took me to the rental car place. Once I was at the hertz place, I told the lady to get me out of the Hyundai Accent I had reserved and into something American. There was no way I was going to driving around michigan in a foreign car! For a couple of bucks extra, I got a Ford Focus with sirius satellite radio. I plugged my GPS in and my phone in the car to charge up and off I went!

Michigan is miles and miles of absolutely nothing once you get out of detroit. Good thing the car I rented was averaging over 40 mpg so I wouldn’t have to look for gas stations until I got back. If any of you guys make this trip, forget about finding things to do in the town to kill time because there is nothing in lansing to do. Absolutely nothing. I had magazines, my laptop, and a hotel with internet to keep me busy, but that was it! When I woke up in the morning after staying in the hotel, I made the mistake of checking out early and I was bored out of my mind looking for a mall to walk around in before my 1:00 appointment. I couldn’t find anything! I wound up sitting in the car in a parking lot calling family to kill time until the appointment. Then I drove to Crisler’s office an hour early, figuring at least his office would probably have some good magazines to read while I waited.

A nurse came in to take my vitals and weigh me and I went back to the waiting room to wait for Crisler to take me. When he took me into his office, we talked about the town and the economic conditions and then he started looking at all the pages of labwork that I brought with me from other doctors. He said i have one of the biggest spreads he has ever seen on the labwork. When I told him I took propecia he said he was very sorry to hear that. He said he has a lot of patients that come to him that took the medication. He said it’s always a similar story, just a different variation on the labwork. My situation is a weird situation because I have fantastic testosterone levels and very poor free testosterone. Thyroid is good. Low DHEA levels. He is going to have me do a 24 hour urine test, because he needs some numbers he can count on before he can treat me.

So that’s basically where we left things. I’m waiting for the urine test to show up in the mail and then we’ll go from there. It takes about 10 days to get results back after I complete the test. On my way out, the lady that helped me book my appointment told me 95% of people that see Dr. Crisler come from out of state, so I feel like I’m in good hands. He must be excellent if almost all his patients are traveling to see him. I am going to wait a bit and see how my treatment works out before telling everyone to get on a plane and go see him, but so far I have a good feeling about everything. Most doctors tell you the problems are all in your head, at least we have some doctors here that will listen to you and try to help you instead of telling you that you are crazy. The second reason I am optimistic is that he seemed pretty confident he could help me.

I’ll be updating this thread as my treatment progresses. Hopefully I’ll have some better news in the next few months!

#10

I just completed the urine test and mailed it today. It’s a 24 hour test where you pee in a jug and then fill a tube from the contents of the jug. The test tube gets frozen in your freezer and overnighted to a lab. I’ll be out of the country from the 2nd of July until the 22nd, so there won’t be any chance to start any medication or treatment for a few weeks. When I hear from the lab and start my treatment, I’ll keep everyone posted on what happens.

#11

I’m back in the USA and ready to continue my treatment. My results for the 24 hour urine test are in and I’m ready to discuss the results with the doctor. As soon as I finish that conversation I’ll know what kind of treatment I’ll be starting. Stay tuned for another update real soon.

I know there are a lot of people at the edge of their seats to see what happens next because they are trying to figure out if it is worth flying in to see a doc who acknowledges that finasteride can cause problems. I’ll do my best to keep everyone in the loop as things progress. I could very well be one of the worst cases ever, so if I do recover, I think just about anyone could.

#12

I wish I had some really good news to report like that I had the magic bullet to totally cure this mess once and for all, but in real life things are never that quick and easy.

Today I went over my lab results with Dr Crisler and, despite me feeling horrible, most of my lab work looked decent. Testosterone levels were normal and the only thing that really stood out was very low DHEA levels. Crisler would like to work with another doctor I have on seeing if I have an yeast infection. I’m not sure what exactly was in my 24 hour urine test that had him wondering about that, but I’ll make that my next task.

In the meantime, Crisler’s office is going to be sending me some DHEA supplements to take. Crisler said the DHEA is very important for helping me feel better.

I’ll keep you guys updated on how I am doing. It’s going to be a slow journey and take a long time but the fact that my hormone profile was more normal than it was just six months ago is a good sign that my body is healing. As soon as I have a copy of the labs I’ll post it up.

#13

I got my DHEA pills and started taking them on Monday. Even though it’s only been 24 hours I already feel some change. Libido is still horrendous, and maybe anxiety is a little worse, but there is good news too. Usually I can’t be bothered to go to the gym because I feel like there is no payoff. I go, but I don’t get the “natural high” that I used to get when I was in high school following a workout. It’s probably the same reason why I don’t get a euphoric rush from anything I do.

Anyway, last night I felt restless and I felt like I had to do something. I went to the gym and gave it my all and had a pretty good workout. This morning I woke up at 5AM and felt very restless. Again, I had this feeling like I couldn’t just sit there. I got dressed, went to the gym, and did a full mile on the treadmill.

This kind of behavior is completely out of character for me. Usually I am a sleep until noon kind of guy. I think the new found energy is coming from the DHEA, but it’s too soon to be sure.

#14

be carefull using dhea cause it could drop your endogenous androgens beena precursor .

#15

Yeah, there are some factors as you’re supplementing your own production. In cases of adrenal fatigue it can be helpful. I would only use it if it was proven it were deficient and therefore helpful. It can also cause increase in estrogen.

#16

GUYS, isn’t he seeing one of the leading experts in the field!!
Jeeze… so many think they are doctors on this site now! Let the guy get treated!

#17

Ah. Missed the part where he said it was the doc’s treatment.

#18

It’s a DHEA 25 MG troche. I’m instructed to dissolve one troche under the tongue twice daily. Too soon to say if it’s working or not. I’ll keep everyone posted.

#19

I hope the frequent posting isn’t getting on anyone’s nerves. A lot of things are happening to me and I was thinking about waiting to post and seeing if it’s a fluke or I’m genuinely recovering. I can’t wait though, because I’m too excited.

So far are the changes I’ve been noticing:

Like I mentioned before, more energy and motivation to do things instead of just sitting around doing nothing. When I go to the gym, I feel a euphoric sense of accomplishment instead of just feeling nauseous and dizzy.

In my foreign language classes I notice that I am much better able to concentrate and I am also much much better at pronunciation. As recently as last week I could not do a rolling R to save my life, now it’s like my brain and my mind are one!

Chest pains are gone! All that pain when I drink anything but water is gone. No more 30 minute episodes where I feel all this pressure under my sternum.

Runny nose when I eat problem is gone! I used to be embarrassed to eat in front of people because of a runny nose I would get while I eat.

Conversation seems more fluid and easy, I don’t need to think so hard to speak

I am more focused and feel like my memory is improving. I am aware of dates and times and much less dependent on electronic organizers.

Libido has a long way to go, but for at least 25% of the last couple of days I have felt really close to normal. For me that’s a massive improvement.

I have my emotions back. I’m no longer stuck in that world of fake contentment where I was unable to express feelings. I feel much more human and less like a robot.

If this keeps up, I’ll have to start a thread in the recovery section. I don’t want to get too ahead of myself because there have been times where I thought I was getting better and it turned out I got my hopes up for no reason, but so far so good. :smiley:

#20

that is good news this treatment is working for you
adrenal profile is something i myself should look into , i put it off since my cortisol blood readings were normal a year or so back

can you offer an opinion as to why the propecia may have affected your adrenal gland function?

#21

No idea why adrenal gland function was screwed up. I think the human body is enormously complex I think we are no where near close to understanding how it it works.

So far it’s been one hell of a roller coaster ride. I have been going from having a lot of emotions to falling flat for a few hours, to having lots of emotions again. Last night I was very aggressive and emotionally flat at the same time. As time goes on, the periods where I am normal become more and more frequent and the periods where I feel confused, tired, and emotionally numb are less frequent. So I would say most of the non sexual side effects are gone.

Now the only thing left is to improve libido which is still not good enough for me to be happy. For me, this is extremely important, I would rather have perfect libido and brain fog than no brain fog and a sub-standard libido.

#22

Huh, I had the same rapidly oscillating side effects right before I started feeling much better, and my sexual sides started to clear up soon after my body and mind did. I’m about 25 days off finasteride and I’m pretty much back to normal aside from getting nauseous everytime I have to make a bowel movement. I hope this means you’re getting better!

#23

This morning I was at a point where I was about 50% recovered throughout the entire morning. I think if this continues I’ll be able to get on with my life and leave this mess behind me. Brain fog is gone, energy is great, no runny nose, no migraines, no anxiety, no more forgetfulness, and no more chest pain. Sure there are periods in the afternoon where I feel like I’m slipping backwards, but the periods where I feel recovered are becoming more and more frequent and the old zombie-like state is becoming less and less frequent.

I was complaining in some of my prior posts that I’ve been getting solid erections but no turned on FEELINGS with them. Well that’s been changing lately. I’ve been getting the horny feelings every now and then along with all the physical signs of arousal. I’m very happy with my progress so far but I still have a long way to go.

To be honest, there were times where I thought my life was pretty much over, that I would be sitting around staring out the ceiling for the rest of my life unable to think clearly, enable to feel any emotion, unable to motivate myself to do anything. Now I see a bright future ahead of me, a life full of possibilities. I hope people reading this will realize that a better tomorrow is always around the corner and never give up hope.

Crisler helped me a lot so far. Can he help everyone? I don’t know but why wouldn’t you at least try? I recommend to everyone to go to the best doctor you can so at least you can say to yourself you tried your best, sought out one of the leading experts in the field and did everything you possibly could to recover. We’ve got someone who understands the problem and wants to help, which is more than what you can say for 99% of the doctors out there. What more could you ask for?

#24

hey joetz, any updates on how you’re feeling? How long are you going to be taking the DHEA supplement? Is Dr. Crisler going to order any more tests to see how you are progressing?

#25

I wish I had more good news to report. 4 days after I started the DHEA, I felt like things were really changing. My libido was coming back and all non-sexual side effects were gone.

Several weeks later I’m still in the same place. Memory and concentration is vastly improved, I feel like emotions are less flat and I have more energy. Unfortunately I’ve made no progress with sexual side effects. I might have a moment or two early in the morning where I might actually feel something, but it’s such a muted and pathetically weak feeling of arousal and it’s usually very fleeting.

I’ll try calling crisler tomorrow and see if I can find out a little more on what the long term plan is. Maybe I’m impatient and I need to wait for things to get better or maybe it’s time for another medication. I’ll see what he says.

#26

hi Joetz…just from my little experience i did prescribe for myself many medications and i remember when i used pregnenoone and i was feeling the same sensations you are feeling with dhea…after 3 mouths i can say that the body is better and my emotions etc is getting beter ,so i think for sure u should try something mor cause we have to go to get rid but remember also that the body akes some times(mouths)to get in his right track…it is the same of when we took propecia:to let the hair to don t fall anymore it took 3 mouths or even more…some take your time

#27

It does take a long time, that’s for sure, but little by little I am getting there. This morning I was close to feeling almost fully recovered. It’s funny how things keep changing. Every time I come here and say I’m doing better, things collapse and I feel dumb for getting everyone’s hopes up. When I post that I’m doing terribly, I’ll wake up feeling aroused for a few hours the following morning.

I need to be patient and give myself time, but at the same time it’s hard not to panic on the bad days and and get very impatient. I want to be recovered yesterday! It’s sad that we’ve all lost some of the best years of our lives. “Two steps forward one step back…”