4 years on Propecia- my story

Heres another update for everyone. Stay positive and don’t get down…

8 months off.

Fatigue- For the last 5 days I have felt a weird lift from this. I dont look exhausted anymore in the mirror. My sleep is feeling more refreshed. Please note this is one of the first things that happened 4-5 years ago. I am no longer tired after my meals anymore. This all just happened four to five days ago. Havent had this lifted at all.

Depression- Havent really felt too too bad but still comes and goes/

Anxiety- I have it right now but havent had it in a while. Seems more like an adjustment since fatigue has almost lifted. Im sure will pass shortly.

Memory- Still fine. No problems.

Brain fog- Pretty much gone. Can focus and think clearly with no speech problems etc.

Emotional- This is where I feel things are stablizing more which is one of the first things to happen 4-5 years ago. If I got rid of the anxity Im currently experiencing than I could probably say im normal again.

Sex drive - I went through a wave of increased sex drive. I actually didnt like it but now it seems to be more stable.

Erections- perfect. No problems.

Slurred Speech - Still gone.

Great to hear you are clearing up and staying positive. The anxiety that you are having is it mild? What do you do to help your anxiety?

Anxiety I was having was the terrifying feeling inside. Just a very dark kinda scary feeling. Things didnt feel right. I have dealt with anxiety from the past and know how to deal with it now. I dont take anything for it but have xanax just incase I really need it. Its mostly mild anxiety but can get bad at some points.

Wow, your description is really VERY similar to my experience. Thanks for posting like this on a regular basis, it helps me compare what I have felt over the last several months. I quit in August '08 and I feel like I am a couple months behind your story. I guess I’m 6 months in and still have brain fog, some trouble creating short term memory as well as I used to, anxiety, and lightheadedness. (Also the emotional wall type of thing where you know you are not yourself really and are kind of numb). On the plus side, some things have gone away, like the complete inability to think or read anything. Can I ask when you quit exactly? At what point did you feel like you really started to process information almost the same as before, or has that not happened yet?

June 2008 is when I quit. I would have to say at the 7 month mark I was feeling pretty good. But I still would have some off the wall symptoms come out of no where for 4-5 days and then BAM I wake up one morning and there gone again. The thing is it happens less and less frequently. I think its the bodys way of trying to balance us back out? I dont know. But I have improved ALOT over the past 8 months.

Was it a very gradual process that you got better over that period of 7 months or do you feel like it happened in spurts. I guess my question is if you felt reasonably well at 7 months, was it only slightly better than you were at 6 or was there a short period at some point in this process that brought about tremendous change.

Did you do anything in particular that you feel contributed greatly to your betterment? (ie: excercise, vitamins, medication, etc)

It was definitely a gradual process. Things just keep getting better but I have dealt with weird side effects somedays. Most are very tolerable. I dont think im 100% yet but very close to it. As far as anything I did in particular.Hmmmm I always worked out and continue to do that. Im into trying to get a good physic/ ripped body so I do alot of benching, curls, tri pull downs, ab workouts, core stretches, and some cardio. I try not to eat alot of bread or pasta but do sometimes. My diet is very normal for the average american I think. Drink water, gatorade, sprite, Eat: chicken caesar salads, steaks, baked potatos, eggs, bacon, grits, brocolli, mashed potatos, pulled pork, potato chips, nuts, french fries. Not the healthiest but I exercise alot which balances it out. The only drug I take is levothyroxine for my hypothyroid condition which was before propecia.

Did you start to lose the hair you had presumably retained from taking the pill at some point in this recovery process, if so, when (how many months into quitting)?

The reason I ask this question has nothing to do with an interest in keeping hair on my head. Had I known even 5% of the problems this pill was going to cause I would have NEVER even touched an unopened box. My reason for asking is trying to see if there is some correlation between this drug and its ‘DHT inhibiting’ effects leaving the body (ie: starting to lose hair once again) and the recovery of the body’s normal function before the drug. As it stands I have really not begun to lose the hair again yet, or may be just beginning. If these things are related I will be praying to be bald in no time as long as it means being able to function normally once again.

If there are any conversations on this board you are aware of where they correlate the resumed loss of hair to the recovery of lost mental abilities, I would also appreciate it if you can point me in that direction.

Sorry if I am asking you too much, but my situation is similar to yours in that I am concerned about the mental aspect moreso than sexual, and your situation is very analogous to mine. Also I see you are a very active member with over 100 posts.

My mental side effects only began to start improving once hairloss started to resume again, after 8 and 14 months off the drug respectively (the two times I had major sheds). Note I’m not saying the hair loss was the reason for things improving, for all I know it could be a return of androgen levels and time.

That is really good news from where I currently sit, since I have yet to begin losing hair again. Now I might have something to look forward to. Anyone else have thoughts on the possible correlation between these two things?

Lacking androgen can certianly cause mental sides, so getting it back helps. I myself am still losing hair and dealing with some fog, it’s getting slightly better but wouldn’t go so far to say hairloss returning marked improvement in that area.

Well the thing is that I started Propecia and my cause of hair loss was most likely my thyroid which isnt a way to correct the problem, However I was told that to stay on propecia and it will help if DHT is the problem. Well my hair loss was always shedding and it never really did holt even with me being on propecia. I was told that its probably helping I just dont see it. However I have been changing thyroid meds which cause hair loss every time I switch and it can take three months for hair to stop and three months to grow again thyroid wise. Plus being hypothyroid and not treated correctly will cause hair loss. I also think all the stress from propecia sides and my body correcting itself can cause hair loss. So I cant say that my hair loss increased or started again at the time my symptoms from propecia started to go away. The hair loss was always there the whole time being on and off propecia so I couldnt help ya on this one. But the time frame that Mew said is a good range I think.

well lately I have been feeling terrible… Getting fatigue bad, little bit of brain fog. I think the fatigue causes the brain fog in my own opinion. Hopefully this is just part of the process as I thought I was getting better.

Sorry to hear you have regressed some. Don’t get too down though, as I’m sure it’ll pass. From the posts I have read of yours it sounds like you have mostly done excercise and try to be healthy, which I know is a good thing. However, is there more we can do? Have you had your hormonal levels checked?

I was very passive for 6 months just waiting to see how I felt after the pill left my system. While I did feel gradually better over this period of time, it certainly was not the drastic return to normalcy I had expected. So I decided to take a proactive approach and meet this thing head on. Ever since then I started playing around with supplements and visiting doctors, which once again seemed to ignore the fact that I was pretty much flat out telling them that Propecia was the cause of my problems. I clearly have an androgenic hormone imbalance, and adrenal fatigue among others.

Eventually I found a Doctor in Houston that seems to really undesrstand this problem. We did some hormone and nutritional/amino acid testing and don’t have the results back yet, however I am meeting with her in early March to review these and define a more specific course of action.

In the meantime, I did have some bloodwork with me at the time of our first appointment that showed my Testosterone was VERY low and my Estradiol was high. There were certain things that even without the more extensive testing results she was very sure about (just from understanding the pill’s mechanism of action within the body). Basically, what she wants to do is try and get my body to return to it’s normal endogenous production of testosterone. If we are unable to do that she has additional alternatives for the future, with the LAST RESORT being hormone replacement therapy, but she is going to avoid that 100% if it’s at all possible, because it’s lifelong and undesirable. She immediately started me on a mixed cream of Progesterone and Chrysin, the idea behind these was to block my brain from thinking I am producing any testosterone (so that it wants to produce more) and also ensuring this testosterone is not converted into estradiol.

In addition to this she just gave me a good set of multivitamins, a good multi amino acid, and some amino acids that are specifically aimed at brain function (again, we did not yet have the test results, but from her experience, she was willing to bet me money that I was very low in PhosphatidylSerine and some other amino acid). The supplement is called Brain Vitale by ‘Designs for Health’.

I have only been using the cream and supplements for 5 days and am already starting to feel some positive effects. Some positive cognitive as well as sexual results are beginning to show, I am also less fatigued. This may sound silly, but I am just starting to have a return of my normally oily skin. These past five years on propecia and 6 months off, my skin was uncharacteristically dry. I take this to be an outward sign that things are JUST BEGINNING to return to normal.

We can continue to communicate, after I have my appointment in March, but I really have a lot of faith in her understanding of the problem, and in her ability to take corrective measures that are not going to cause further harm to my system. I’m getting the sense I will be substantially recuperated in 1-3 months once my testosterone is back in check, and then there might be some additional fine tuning involved.

Sounds like you have a good doc, gcac. That is definitely half the war right there. Best of luck and keep us informed about how the cream treatment progesses, as well as anyhting else noteworthy you think of.

Gcac,

I really appreciate the input. I just sent off for a saliva test for adrenal fatigue and also to check my total testosterone. My last testosterone level was 780 which is really good since I was at 500 on propecia. I also have hypothyroidism which Im looking into possible switching to the natural Armour brand just to see if the synthetics are causing me sides. Right now Im not too bad as i stopped eating alot of bread and heavy carbs. That seems to take a toll on my body and make me more exhausted. I dont know why I have been tested for celiac as well as other inotlerances to food. Nothing comes up. However once I got off Propecia the reactions are not near as bad and are tolerable but just notice the difference big time. On top of that im like always constipated which could be from hypo or propecia. Starting some fiber today and see if it helps. Hope this corrects sometime in the near future. There have been times where im 100% normal cognitive wise but only last 2-3 days and fades back.

Update…

Constipation is looking like it is going away. Starting to pass normal stools which I havent done in 4-5 years. I always been a symptom.

Testosterone is at 770 which is still looking to stay in the high normal range.

Got my 24 hr saliva test for cortisol levels back. ( Adrenal fatigue test )

Morning - 13.8 H Range: 3.7 - 9.5
Afternoon - 1.8 OK Range: 1.2 - 3.0
Evening - 0.6 OK Range: 0.6 - 1.9
Night - 1.8 H Range: 0.4 - 1.0

  • Looks like im under alot of stress

Brain fog came for a week or so and is now pretty much gone.

Still get unrefreshed sleep and feel sleepy throughout the day. Not the exhaustion I used to have but now its more like Im just sleepy. I feel its a different type of fatigue… seems like an improvement in my book.

Overall hoping to keep improving with time.

With your high Total T, any sexual dysfunction problems ongoing still? Also, did you discuss with the doc about brain fog correlating with your fluctuating cortisol levels?

No my sex drive and functioning is fine. He thinks that my body is real stressed out with the cortisol levels. I told him I am… even right now I feel like I cant handle stress. I dont know why… Im sure staying out drinking to 5am saturday and sunday plays apart of me feeling bad. But I couldnt pass up hanging with some chicks. I feel like crap today energy wise. And am waking up really exhausted the past couple days. I just cant seem to snap out of everything.

Just want to add I have the pressue in my head along with the fatigue. I also have a kinda motion sickness type feeling that is minimal but definitely there. I was real bad fatigue wise this morning but after I ate it was a huge relief. Will let you all know if it goes away soon. Just want to log this for other people who want to see just incase there symptoms are like mine.