This is my Propecia story.  - by JH / Legenden_1999@yahoo.com

First I would like to address a few things that I often see people who doubts my story get stuck on.

Up until I took propecia I was 100% healthy. I was not abusing alcohol, never touched drugs and I was not overweight. I was not taking any medicine except for a few painkillers for headacke maybe four times a year. I never had any psychical problems and actually I was often described as a psychically strong person. Im white causasion, 180 cm high and weighted 70 kg. I had normal bodyhair and beard but was thinning on top and had high tempels. I was happy and was enjoying life.

It all began back in year 2000 when I was 29 yo I decided to try propecia for my hairloss. Initially I had very few sideeffects, and I could see a difference on my hair after only a few months of use. I was regrowing my hair again, even on my temples. Of cause I was satisfied, and no way a few

sideeffects should make me stop it. All I had was a periodic nutacke, and some decreased libido. After some time I also noticed that both my acne and hair on my back seemed to disappear, and I just considered it an additional bonus. All in all I was a happy camper.

Then after about five months on propecia, I started to feel strange. Like I had trouble to concentrate, dizzyspells and felt fatigued. It was like I was in a tube of some kind, and everything seemed unreal

and dim. You can compare it with a radio that are not completely tuned in to the station. Like I was lacking the abillity to tune in sharp on the world. Later I found a word that matches the feeling: "brain fog". I was simply spaced out and beside myself.

First I thought it would pass in a few days and I turned in sick. Then after 2 days on the couch with no improvement I decided to go to work anyway. That was when it really got scary, cause I realised that I couldn't work anymore. I’m a computerprogrammer and I couldn't concentrate on my work, and everything on the screen was just blurred.

Somehow I got through the day, and in the evening me and my wife and her siblings was at her parents for dinner. This was when my whole world crashed. I found out that I couldn’t follow the conversations. Basically I couldn’t handle being in a crowd cause it was to confusing for me. Of cause I got spooked, and we decided to leave and drive home. As I was sitting in the car, thinking about what just happened, I had a full-blown panic attack. I thought I should die right there and then and my wife drove me straight to the hospital. They did a bunch of tests and made 2 CT scans of my brain without finding anything unusual. I was later referred to an MRI scan and that was ok also. After that day my symptoms just got worse cause now I had to deal with the anxiety also. This was also at this time I started to have muscle twitches in my left foot.

A few days later I saw my regular doc, and she thought I should see a psychiatrist, as she thought my symptoms was because of stress. I agreed and went and saw him some time later because of the waiting time. Please notice that in all this time I spend seeing doctors, I was still a wreck and

regular had panic attacks. I also saw a neurologist but he kinda blew me off, cause I was able to stand on one leg and had normal reflexes.

Anyway, I saw the psychiatrist a bunch of times, learned to handle stress better and control my anxiety, but it was like he ignored the rest of my symptoms, and only dealt with the stress and anxiety problem. I was offered SSRI drugs, but refused cause I still thought this would be sorted out naturally in a matter of months.

After a half year since all this started I lost my job, and since I at this time thought it was my job that stressed me and made me ill, I didn’t care. I thought that now I could take my time to be well, without having a job waiting for me, and live a stressless life.

It was just that, even without my job, and with help of my psychiatrist, I still wasn’t getting any better!

I then started to think about if there was a connection with propecia and my problems, so I decided to stop propecia cold turkey, and so I did. This lasted for a little over a half year, and since I saw no improvement in my symptoms I started to take propecia again.

Some time went by and I stopped seeing the psychiatrist. My anxiety has gotten a little better cause I now saw that my illness wouldn’t kill just now, but the rest of the symptoms wouldn’t leave.

Then maybe a year after I stopped with the psychiatrist I decided to give him another try, but he has stopped practising, and I had to see another one. She convinced me that seroxat (same as paxil) would help me and I gave it a try. It was a mixed experience, cause I felt my anxiety disappear, but I gained 20 pounds, and was getting even more spaced out, and had to sleep all day long. I stood it out for a whole year to give it a fair chance but it didn’t help me besides my anxiety, which already was improving before taking the SSRI.

In late 2003 I decided to stop taking seroxat. I did this without seeing the psychiatrist, cause I now was convinced that my symptoms was not something a psychiatrist could help me with. I made a plan for myself to withdraw it over 3 months, but even then the withdrawal symptoms was pretty damn horrible. I made it though and noticed that the anxiety didn’t come back.

I started to run a few times a week to feel better and to get rid of the pounds I gained while on the seroxat. Spring 2004 was also the time I quit propecia again, cause now I wanted to stop taking drugs totally and see if my body should rebound be itself with help of exercise and healthy diet.

Actually this made me feel a little better. Maybe it was just because I knew I was doing my best to improve my health, but I felt (and still feel) that running 3-5 miles a few times a week gives me some more energy. The bad side of it, is that it takes so much motivation to do it, and thats not what

I have a lot of.

In the beginning of 2005 I started to look into if others had similar symptoms from propecia, because I still had a idea about propecia starting all this. I found the www.propeciasideeffects.com website and the yahoo group and started reading. I was shocked to see how much my symptoms matched other former propecia users, and also those of hypogonadism.

Of cause I got a bloodtest done and it showed that I had low T, just within the reference values.

10.6 (8.0 - 30.0). My LH and FSH was also low, suggesting secondary hypogonadism. Just as I would have guessed from seeing the results of the other members of the propecia_side_effects group.

In one way I was happy to see numbers that showed a potential problem, but on the other side I knew it probably would be hard to convince doctors to believe the theory and treat me. Especially because it seems that doctors don't know that even low-value in-range numbers should be treated if it cause symptoms like mine. One really should read Dr. Eugene Shippen's book, he knows about this stuff.

When my doctor saw my results he claimed it was normal. I had to ask him for the numbers, and then I tried to convince him that he should refer me to an endo, but he wanted to do a second test first. Luckily my uncle is a doctor too, so he talked to an endo, and he agreed to see me, cause he also thought my numbers were too low. Then I told my doctor that this endo wanted to see me, and I got the referral. Later the other bloodtest came back at 8.0 (8.0-30.0) so it was even lower which didn’t surprise me, cause I felt particular crappy that day they did it.

 

After 2 weeks waiting time I saw the endo. I got a chance to tell him all about my theory about propecia causing this, and he said he wouldn't rule out that possibility even though he never heard of it before. He examined me, and I told him about my symptoms, but he wasn’t all that much for talking about treatments just yet. We did talk a bit about regular TRT and HCG though, but it seemed that he didn't knew the advantages from HCG over TRT, cause he said they would give same result and regular T would be cheaper. Usually he only use HCG to keep fertility. Besides that he claimed that my balls would only shrink on regular T if I overdo it.

Anyway, regardless of his opinion, he would agree to giving me HCG if I was warranted to treatment. Before he would treat me, he wanted a new bloodtest and an MRI first, cause he wanted to rule out a tumor, and see if I’m still low in T and LH/FSH.

I had the MRI and while I waited for the result, I tried to decide what treatment I would ask for in my next meeting with the endo. I came across some studied proving that the HPTA could be restarted with HCG and Clomid, so that became my plan, and I emailed my endo the studies. The MRI result came back OK (whew) and I had my next meeting with my endo. This was June 2005.

At first he started out by saying that since I was within reference and there was no tumor, I was OK, but after showing him the AACE guidelines and showing him some other documentation that I was too low, I convinced him to let me try Clomid. However I couldn’t convince him about the HCG, cause he wanted to see what Clomid alone would do for me, so I had a script for Clomid.

I started to take the Clomid right away. The plan was to take 100mg/day for 2 months, but after a week I started to have serious sideeffects in my eyes. I cut the dose in half, and 3 days later I cut it in half again down to 25mg/day. I had a bloodtest after the first week and it came back with T at 17nmol/l (8.0-30.0nmol/l) so it seemed it was working well for me.

After one month I had another bloodtest and by then my T was even higher. 35nmol (8.0-30.0).

The funny thing was that I couldn’t feel a damn thing besides maybe a little more energy and bigger balls. The 2 months passed and I came off. The sideeffects in my eyes disappeared, except for some floaters in the left eye. (I still have the floaters now 9 month later).

One month after Clomid I had another bloodtest. T was now at 16.5nmol (8.0-30.0) and I still felt I had some more energy. It seemed that my HPTA had settled on a higher level. My endo and I agreed to retest in some time and take it from there.

Then in November, 3 months after stopping Clomid I had another bloodtest which came back at 16.9nmol/l (8.0-30.0), even higher than the previous. I had hoped it would be higher, indicating my T was rising, but it seemed pretty steady at about 16-17nmol/l.

In December I started to feel worse again, and for the first time in half a year I got a cold. (which I used to get all the time when my T was low). I suspected my T levels might have dropped, so in January I went in for another bloodtest which came back at 13.5nmol. Not good, and to make matters worse, the laboratory had decided to split the reference range in 2. One for the 20-30yo and one for the 30-50yo, and since I was 33 my new reference became: (8.0-22.0)

This was a week before my appointment with the endo, so I decided to ask him for a TRT trial since my T seemed to decline again. The day came and I went to see him. He took a look at my results and claimed I was smack in the middle of reference, which was just great. I suggested the TRT trial but was blown totally off. If I wanted we could meet again in a year!

As I walked out the door, I was pissed. This was supposed to be one of the best endos in the country, and he wouldn’t even consider that 13.5nmol/l (translates to 388ng/dl) was to low for me.

I felt hopeless and depressed for the rest of that day. However, the very next day I started to look on the bright side. I wasn’t constrained by doctors anymore. I was "free". The following days were spend by researching, and I decided to take that TRT trial by myself. The plan was to follow Dr. Johns protocol starting out with 100mg Testosteron pr. week and 250ui HCG the 2 days before the shot. I was hoping to get a bloodtest at my regular doc after a month to adjust T and E2 levels.

I bought all the stuff from the net, and found some info about how to inject yourself. Then in the middle of February 2006 I started TRT. In the first week, I noticed absolutely nothing, not even a placebo effect, but within the second week I think I’m starting to notice some small improvements.

I hope it will continue, and I finally will recover, but only time will tell…

JH

 

 

Symptoms

Remarks

Tense tingling vision

This was actually the first symptom I noticed, its like I can’t hold focus without flickering.

Trouble concentrate

 

Decreased libido

No urge to do it, and no spontaneously erections anymore.

Bad short term memory

 

Dizziness

When I concentrate too much, I get dizzy.

Decreased energy level

Has improved since I started working out, but I’m still dead at 6pm.

Muscle waste

 

Brain fog

My main issue.

No hairloss

I even still have the hair I regrew on Propecia.

Decreased stress threshold

Just being in a crowd stresses me out.

Decreased feelings

No interest in things anymore.

Decreased motivation

I just want to be left alone and do nothing.

 

Treatments

Duration

Remarks

Propecia

2000 – 2004

Was off propecia for ˝ year after symptoms started, but began propecia again.

Stopped Propecia for good

Mid 2004

 

Vitamins, Herbs

2001 –

No noticeable improvements.

Zink

2001 – 2001

Feeling worse

Seroxat

Early 2003 – Late 2003

Felt even more spaced out, but I got rid of my anxiety.

Working out

Early 2004 –

Gave me more energy

Healty Diet, no sugar and white bread. More fruit and green stuff.

Late 2005 –

Made me feel a little "tense". Almost never has headache since starting this.

Tyrosine, GPC, ALC acording to the "Edge Effect"

Jan 2006 –

No noticeable improvements.

TRT

Feb 2006 –

No results yet

 

Date

Test

Result

Reference

Remarks

4. Feb 2005

Testosterone

10.6 nmol/l

(8.0 – 30.0)

 

4. Feb 2005

LH

2.3 iu/l

(1.0 – 10.0)

 

4. Feb 2005

FSH

1.4 iu/l

(1.0 – 15.0)

 

4. Feb 2005

SHBG

23 nmol/l

(10 – 75)

 

4. Feb 2005

Estradiol

<0.04 nmol/l

(0.0 – 0.2)

 
         

23. Feb 2005

Testosterone

8.0 nmol/l

(8.0 – 30.0)

 

23. Feb 2005

DHT

0.91 nmol/l

(0.8 – 2.8)

 

23. Feb 2005

Prolactin

0.10 iu/l

(0.08 – 0.46)

 
         

14. Mar 2005

Testosterone

8.2 nmol/l

(8.0 – 30.0)

 

14. Mar 2005

LH

2.0 iu/l

(1.0 – 10.0)

 

14. Mar 2005

FSH

1.3 iu/l

(1.0 – 15.0)

 

14. Mar 2005

SHBG

19 nmol/l

(10 – 75)

 

14. Mar 2005

Estradiol

<0.08 nmol/l

(0.0 – 0.2)

 

14. Mar 2005

IGF-1

164

(94 – 252)

 

14. Mar 2005

Prolactin

0.11 iu/l

(0.08 – 0.46)

 
         

16. June 2005

Testosterone

17.9 nmol/l

(8.0 – 30.0)

1 week into clomid treatment

16. June 2005

LH

8.7 iu/l

(1.0 – 10.0)

 

16. June 2005

FSH

2.6 iu/l

(1.0 – 15.0)

 

16. June 2005

SHBG

24 nmol/l

(10 – 75)

 

16. June 2005

Estradiol

0.10 nmol/l

(0.0 – 0.2)

 

16. June 2005

Prolactin

0.24 iu/l

(0.08 – 0.46)

 
         

25. July 2005

Testosterone

35 nmol/l

(8.0 – 30.0)

5 weeks into clomid treatment

25. July 2005

LH

11 iu/l

(1.0 – 10.0)

 

25. July 2005

FSH

4 iu/l

(1.0 – 15.0)

 

25. July 2005

SHBG

25 nmol/l

(10 – 75)

 

25. July 2005

Estradiol

0.22 nmol/l

(0.0 – 0.2)

 

25. July 2005

Prolactin

0.13 iu/l

(0.08 – 0.46)

 
         

12. Sep 2005

Testosterone

16.5 nmol/l

(8.0 – 30.0)

1 month after stopping clomid.

12. Sep 2005

LH

2.8 iu/l

(1.0 – 10.0)

 

12. Sep 2005

FSH

1.7 iu/l

(1.0 – 15.0)

 

12. Sep 2005

SHBG

31 nmol/l

(10 – 75)

 

12. Sep 2005

Estradiol

0.14 nmol/l

(0.0 – 0.2)

 

12. Sep 2005

Prolactin

0.15 iu/l

(0.08 – 0.46)

 
         

23. Nov 2005

Testosterone

16.9 nmol/l

(8.0 – 30.0)

3 months after stopping clomid.

         

6. Jan 2006

Testosterone

13.5 nmol/l

(8.0 – 22.0)

5 month after stopping clomid.

6. Jan 2006

LH

3.0 iu/l

(1.0 – 10.0)

 

6. Jan 2006

FSH

1.8 iu/l

(1.0 – 15.0)

 

6. Jan 2006

SHBG

25 nmol/l

(10 – 75)

 

6. Jan 2006

Estradiol

0.11 nmol/l

(0.0 – 0.2)

 
         

03. Mar 2006

Testosterone

13.9 nmol/l

(8.0 – 22.0)

On TRT 100mg/week for 5 weeks, Taken 1 day before the shot.

03. Mar 2006

Estradiol

0.7 nmol/l

(0.0 – 0.2)