New member introduction

Member Stories
#1

Hey all - I just found this forum today.

About 2 months ago I was diagnosed with hypogonadism, with T levels about 100 and E levels about 80. I felt poorly, and I’m glad my doctor had the smarts to look into my hormonal levels. I’m 44 years old, but I’ve been having symptoms for a long time.

I never took Proscar for cancer or Propecia for baldness. However, I was in an investigational study of finasteride in late 1986. At the time I didn’t know what the drug was or what it was used for. The study was to learn about drug clearance and blood levels, if I remember correctly.

About 3 months after the study, I suddenly became tired, depressed, and began gaining weight rapidly. Within six months of the study, I had gained 40 lbs. I went to doctors and nobody knew what was wrong. After several months, the symptoms subsided and I spontaneously lost the weight. Nobody tested my hormonal levels.

I had a couple more periods like this over the years. But about 3 years ago, this syndrome of exhaustion, weight gain and other symptoms came upon me and never let up. I hadn’t seen a doctor in 8 years until recently. My current doctor sized me up and said, “I think you might be hypogonadal. I’m going to do some tests.” And she was right.

At this time I’m having a T injection every other week and taking 1.25 mg letrozole each 2 weeks. My insurance is steadfastly refusing to pay for T gels or other delivery systems. I feel better but not 100%. The injections seem to make me feel normal for about 7 to 10 days, but no longer.

Enough about me. I hope to learn more about my condition through the other members here. Comment and/or questions are welcome. Take care.

#2

Welcome Chuck… Sorry to hear about your situation.

Did your doctor do any gonadotropin tests, like LH or FSH? Maybe asking about HCG would be a better start, since TRT will eventually suppress whatever independent production is left. Also if you want to read more about TRT you can check out this support group, good pool of data there.

So about that study, who conducted it and why did you participate? Just curious is all. You took this drug the year I was born… a tremendous travesty it wasn’t identified for the hazardous chemical it is back then.

Hope your treatments improve your condition. We’re still looking into the actual reasons for this.

#3

wow…
Please keep in touch, i hope we can help you, as well as we can learn about your experience in this study. Do you remember how many miligrams you had to take on that study? Was it on a daily basis?

TRT works better if you take smaller doses more frequentely. I think it would be useful for you to join a hypogonadism forum as well.

#4

This part is very interesting.

#5

Here are my responses to the questionnaire in this forum:

  1. Where are you from (country)?
    –USA

  2. How did you find this forum (Google search – if so, what search terms? Via link from a forum or website – if so, what page? Other?)
    –Via a Google Search that led to Topix.com, and had a link to this site.

  3. What is your current age, height, weight?
    –44, 5’9, 180 lbs

  4. Do you excercise regularly? If so, what type of excercise?
    –Not currently. Have exercised a lot in the past. At present I frequently feel exhausted.

  5. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)?
    –A better-than-average U.S. diet. I cook much of my own food, and eat plenty of vegetables, fruits and whole grains, and I limit fat and salt. On the other hand I eat fast food once or twice a week. I don’t consume much sugar in the form of candy, soda, desserts, etc.

  6. Why did you take Finasteride (hair loss, BPH, other)?
    –I participated in a clinical trial for Finasteriade at the University of Utah in late 1986. I believe the study was to test blood levels and clearance rates of the drug.

  7. For how long did you take Finasteride (weeks/months/years)?
    –I took 3 to 5 doses (of unknown dosage) via IV over a one-month period.

  8. How old were you, and WHEN (date) did you start Finasteride?
    –I was 21 at the time of the study, which took place about November 1986.

  9. How old were you when you quit, and WHEN (date) did you quit?
    –The study ended in December 1986 or January 1987.

  10. How did you quit (cold turkey or taper off)?
    –Cold turkey, as you say.

  11. What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic?
    –It was the investigational, pre-retail version of the drug. It was in final testing prior to full FDA approval as a prostate cancer treatment.

  12. What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
    –I do not know the dosage.

  13. How long into your use of Finasteride did you notice the onset of side effects?
    –I began suffering physical problems that might have been hypogonadism as soon as early 1987, 3 months after the study ended. I went to doctors because I felt poorly and was gaining weight rapidly, but doctors didn’t find a cause, and I do not believe they tested hormonal levels. Over the intervening 22+ years, I have had several periods of physical and affect problems that might be due to hypogonadism. The most recent period of poor health (weakness, depression, weight gain) began 3 or more years ago. But I was only diagnosed with hypogonadism about six weeks ago.

  14. What side effects did you experience while on the drug that have yet to resolve since discontinuation?

Put an X beside all that apply:

Sexual
[ x] Loss of Libido / Sex Drive
[ ] Erectile Dysfunction
[ ] Complete Impotence
[ x] Loss of Morning Erections
[ x] Loss of Spontaneous Erections
[ x] Loss of Nocturnal Erections
[ x] Watery Ejaculate
[ ] Reduced Ejaculate
[ ] Inability to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

Mental
[ x] Emotional Blunting / Emotionally Flat
[ x] Difficulty Focusing / Concentrating
[ x] Confusion
[ x] Memory Loss / Forgetfullness
[ ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[ x] Lack of Motivation / Feeling Passive / Complacency
[ ] Extreme Anxiety / Panic Attacks
[ x] Depression / Melancholy

Physical
[ ] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[ ] Testicular Pain
[ x] Testicular Shrinkage / Loss of Fullness (my physician noted this in her physical examination)
[ ] Genital numbness / sensitivity decrease
[ x] Weight Gain
[ ] Gynecomastia (male breasts)
[ x] Muscle Wastage
[ x] Muscle Weakness
[ ] Joint Pain
[ ] Dry / Dark Circles under eyes

Misc
[ ] Prostate pain
[ x] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[ ] Vision - Acuity Decrease / Blurriness
[ x] Increased hair loss
[ ] Frequent urination
[ ] Lowered body temperature

[ ] Other (please explain)

  1. What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
    –At present I am receiving TRT via bi-monthly injections, and bi-monthly oral doses of letrozole (Femara) 1.25 mg. My physician would like me to use topical T gel, but insurance will not cover it at this time.

  2. If you have pre or post-Finasteride bloodtests, what hormonal changes have you encountered since discontinuing the drug (pls post your test results in the “Blood Tests” section and link to them in your post)?
    –I have not had new blood work done since beginning TRT. I am scheduled for this in about 2 weeks.

  3. Anything not listed in the above questions you’d like to share about your experience with Finasteride?
    –Please see my introductory post at propeciahelp.com/forum/viewt … 4537#14537

  4. Tell us your story, in your own words, about your Finasteride usage and side effects experienced while on/off the drug.
    –Please see my introductory post at propeciahelp.com/forum/viewt … 4537#14537

#6

Thanks for your replies.

I believe the drug was administered via injection, on 3 or 4 occasions over a one-month period. I do not know the dosage.

Why do you find the fact my sx came and went interesting?

I will post what labs I have after I dig them up (I just filed them away and it might take me a day or 2 to get them).

Do you have any recommendations for hypogonadism groups online?

Finally, (and I will post this in a new thread), but I think I will try to learn more about the study I participated in. Since it was in 1986, I wonder if records/info will be available. If anybody has any suggestions how to research this, let me know. In the meantime, I have a friend who is in the pharmaceutical research business, and I’m sure she can give me some tips.

#7

Because it has been assumed here that if you get the side effects once discontinuing propecia, they may not miraculously disappear.

#8

I realized I didn’t answer your question clearly. The study was done on behalf of Merck in order to gain FDA approval of finasteride as a prostate cancer treatment. I worked in admin at the University of Utah at the time, and the study was short of qualified lab rats…I mean volunteers. It paid well: If I remember correctly it was about $1000, which was excellent money in those days (the minimum wage was $3.35).

I remember asking my supervisors, who were PhD nurses, what they thought. They contacted the study people and of course, everybody said finasteride is very safe, it’s a blockbuster anti-cancer drug, only one of its kind (true in the mid-1980s), etc. Everybody was quite excited about this substance, because it was a novel way to treat cancer, previous treatments being radiation, chemo and surgery. So my bosses told me to go ahead if I wanted to, and I did.

The study itself was rather dull. I was fitted with a hep lock in my arm, and given an injection of the drug. My blood was drawn at frequent intervals (about every 15 mins for a few hours), the less frequently for a 14-hour period. We were required to spend the night in a hospital room that was converted into a dormitory (I worked just a couple hundred yards away). There were 3 or 4 nights of this, one a week, then it was over. After the last day, they handed us a check. END