Took Fin for 6m in 2004, my situation 20y after

Member Stories
#1

Welcome to our community. Please fill in the following template as a way of introducing yourself, and helping others to understand your background and situation.

Where are you from (country)? United States

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?) Google search

What is your current age, height, weight? 44yo, 5’6", 99Lbs

What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)? Finasteride 1mg

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)? 1mg/day for 4m or so, then half dose for remaining 2m or so

What condition was being treated with the drug? hair loss

For how long did you take the drug (weeks/months/years)? 6 months

Date when you started the drug? Jan 2004

Date when you quit the drug? June 2004

Age when you quit? 24yo

How did you quit (cold turkey or taper off)? cold turkey

How long into your usage did you notice the onset of side effects? Probably 3 months

What side effects did you experience that have yet to resolve since discontinuation? Wide range of typical PFS symptoms, from sexual to cognitive to physical to digestive, see boxes checked below

Check the boxes that apply. You can save your post first, then interactively check/uncheck the boxes by clicking on them. If your symptoms change, please update your list.

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

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

Physical
[x] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[ ] Testicular Pain
[ ] Testicular Shrinkage / Loss of Fullness
[x] Genital numbness / sensitivity decrease
[ ] 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
[x] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[ ] Vision - Acuity Decrease / Blurriness
[ ] Tinnitus (ringing or high pitched sound in ears)
[ ] Hearing loss
[ ] Increased hair loss
[ ] Frequent urination
[x] Lowered body temperature

[x] Other (please explain)
Anxiety can pop up at random times of the day (but not extreme as in above box)

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
Various supplements/herbs. Tomorrow I will be starting Clomid and Armour Thyroid -i.e. hard medicines- for the first time, which is one reason I wanted to start posting here.

If you have pre or post-drug blood tests, what hormonal changes have you encountered since discontinuing the drug (please post your test results in the “Blood Tests” section and link to them in your post)?
I have some recent blood tests; will consider posting some after starting the treatment mentioned above.

Anything not listed in the above questions you’d like to share about your experience?

Tell us your story, in your own words, about your usage and side effects experienced while on/off the drug.
Dear everyone, I took Finasteride 1mg for 6 months when I was still 24 with a bright outlook into both personal life and professional career, other than not having a ton of self-assurance and being anxious about a receding hair line - the reason why I took the drug. Now 44, 3 divorces behind me, no romantic life for the past 6 years, and struggling with social and communication aspects; alongside having to deal with most of the PFS health impacts reported by others. However I do feel lucky to be alive now, which is kind of a miracle considering several opportunities I had to “move on” along the way. With time and reflection, I don’t feel overly depressed anymore nor wanting to die, and I focus every ounce of energy and motivation I can find into achieving the things I love or aspire to while keeping a healthy lifestyle. After much consideration and the advice from two doctors knowledgeable about PFS, tomorrow I will be starting a treatment with Clomid (12.5mg/d) and Armour Thyroid (30mg/d). None of the supplements/herbs/lifestyle changes taken on my own so far produced a breakthrough improvement - hence the calculated risk of stepping into hard medicine. Will keep you all posted!

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#2

Sorry to read your story.
Could you share your total T, free T , FSH, LH and vitamin D level?
Do you have joint pain, spine pain etc?
I am sure you have read the posts about clomid treatment by other members. I don’t say you take or do not take clomid but after reading posts, you will have better idea during and after Clomid treatment.

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#3

Thanks for reading my new member story and your words of encouragement! Joint pain is not something I’ve experienced to date. Vitamin D and B12 levels have been alright after I started taking those vitamins as supplements several years ago. Below are my testosterone, thyroid, and cortisol-related blood results just before starting Clomid 12.5 mg/d + Armour Thyroid 30 mg/d. I will post new results after some time into the treatment. No adverse side effects so far after the first week.
Testosterone, Total: 1428 ng/dL
Bioavailable Testosterone: 111 nd/dL
Estradiol, Sensitive: 17.1 pg/mL
FSH: 5.8 mIU/ml
LH: 4.4 mIU/ml
T4, Free: 0.92 ng/dL
T3, Free: 2.5 pg/mL
Reverse T3: 15.6 ng/dL
Cortisol: 16.7 μg/dL
ACTH: 13 pg/mL
DHEA Sulfate: 157 μg/dL

#4

Thanks for posting your blood report.
I wonder why you are taking clomid because your value look perfectly fine?
you put these values before starting clomid treatment. Your total T, FSH, LH are perfectly good. The total T is on higher side of the range 300 and 1,000 ng/dL. What clomid will change?

#5

According to the doctor (a long-time PFS expert), both my blood results and self-described symptoms point to severe hypogonadism and hypothyroidism. One thing to note is that the Total Testosterone metric in itself is almost irrelevant; Bioavailable Testosterone (which includes free T and albumin-bound T) is the one that can be used by the body and for that metric I was in the lowest 6%-ile for men in my age range… As a quick and informal update two weeks into the treatment, I start feeling better overall, with higher body energy and mind focus. Not quite my pre-PFS state but any modest improvement is a victory! Will keep you all posted with the next round of blood tests.

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#6

As promised, here are some new blood results 4 weeks into the treatment.
Testosterone, Total: 1499 ng/dL (up from 1428)
Bioavailable Testosterone: 103 ng/dL (down from 111)
Free Testosterone: 45 pg/mL (no prior reference)
SHBG: 178 nmol/L (no prior reference)
Albumin: 5.0 ng/dL (no prior reference)
Ultrasensitive Estradiol: 24 pg/mL (up from 17.1)
FSH: 7.2 mIU/ml (up from 5.8)
LH: 3.4 mIU/ml (comparable with 4.4)
T4, Free: 1.0 ng/dL (up from 0.92)
T3, Free: 2.8 pg/mL (comparable with 2.5)
Reverse T3: 10 ng/dL (down from 15.6)

And a quick update on how I feel. In the middle Week #3 I experienced a crash, where my body energy level, mind focus and most other aspects returned to my pre-treatment state. Was quite disappointed. In Week #4 though, I started feeling better upon resuming the treatment after a two-day break over the weekend. Overall I am still modestly improved but it’s not fantastic nor stable.

Based on the above and some guidance from the doctor, I am making the following small adjustment to the protocol:

  • Increase Armour Thyroid to 60mg/d (from previously 30mg/d)
  • Keep Clomid at the same dosage of 12.5mg/d, but put it on hold for 1-2 days when I start feeling worse while on it. This is based on an observation that I tend to feel good on Clomid for the first 2-3 days of a cycle, and then crash.

Interestingly, the doctor pointed out that my extremely high Sex Hormone Binding Globulin (SHBG) is probably the main cause for having such low Bioavailable Testosterone (the T type that matters) despite having a ton of Total Testosterone. So if you guys have any suggestions to lower SHBG, including via nutritional/therapeutic efforts, I’d welcome them!

1 Like
#7

clomiphene increases SHBG

#8

I see your pre-colmid treatment values are better than during the treatment
FSH: 5.8 mIU/ml
LH: 4.4 mIU/ml

four week treatment
FSH: 7.2 mIU/ml (up from 5.8)
LH: 3.4 mIU/ml (comparable with 4.4)

I know many have taken this route.

#9

@HAT-Y Thanks for sharing the medical paper! Good find about Clomid likely to raise SHBG levels (I knew it raises Estrogen). Unfortunately I don’t have my baseline (pre-treatment) SHBG level. Anyway, if you have any suggestions on lowering SHBG, I’d welcome them. I understand that PFS specialists often prescribe Arimidex in conjunction with Clomid, which is one of the options my doctor recently proposed (quadruple Clomid dose to 50mg/d, start taking an aromatase inhibitor). But I read about Arimidex use in PFS patients and decided against it to be safe. Likewise I am staying on a low-dosage of Clomid (12.5mg/d); while not groundbreaking at least I haven’t experienced major side effects yet.

#10

Bro, be careful with these antiestrogen drugs; they’re very dangerous. Clomid could destroy your eyes.
It increases your SHBG because it acts as an ERa agonist in the liver, but it’s an ERb antagonist and a partial ERa agonist in different tissues.
Clomid is composed of zuclomifiene (has a long half-life and is more estrogenic) and enclomifiene.

SHBG has a long half life of around 7 days, so it takes time to lower it.
You can use creatine and boron to free some T from SHBG, but also be careful.
I advise you against combining 2 SERMs or SERM and aromatase inbibitor.

Also, there are no PFS specialists; these are frauds, just prescribing Clomid for everybody and don’t understand PFS and Clomid itself.
just prescribing it and hoping for the best.

#11

Appreciate the advice bro! For now I am staying on a low-dose Clomid, and when I start feeling pretty weird or anxious, which seems to inevitably happen after Day3 or Day4 of continuous Clomid intake, I stop it for 2 or 3 days. This seems to reset things some. I may try boron some day; I see it’s often listed as an element that can lower SHBG. Btw do you have your own “member story”?

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#12

Hey guys, here’s an update at 3 months 2 weeks into the treatment. Overall I feel similar as after month-1 into the treatment, maybe got more comfortable / used to it. I try to be patient, making only small changes and cherishing any small improvements. Also making an effort to stay very lean (vegan diet, low fat, low carbs; exercising regularly).

Total Testosterone: 1815 ng/dL (up from 1428 pre-treatment)
Bioavailable Testosterone: 135 ng/dL (up from 111 pre-treatment)
Free Testosterone: 66 pg/mL (up from 45 at treatment week-4)
DHT: 179 ng/dL (no prior reference)
SHBG: 157 nmol/L (down from 178 at treatment week-4)
Albumin: 4.5 ng/dL (slightly down from 5.0 at treatment week-4)
Ultrasensitive Estradiol: 51 pg/mL (up 24 at treatment week-4, 17 pre-treatment)
FSH: 7.9 mIU/ml (up from 5.8 pre-treatment)
LH: 5.7 mIU/ml (up from 4.4 pre-treatment)
Free T4: 0.90 ng/dL (comparable with 0.92 pre-treatment)
Free T3: 2.9 pg/mL (slightly up from 2.5 pre-treatment)
Reverse T3: 8 ng/dL (down from 15.6 pre-treatment)
TSH: 0.86 mIU/ml (down from 3.1 pre-treatment)

My key takeaways:
Gonadal system: On the positive side, Clomid -even at a low dosage of 12.5mg/d (and then skipping for 2-3d when I start feeling worse on it, as mentioned before)- is having an effect, as Bioavailable Testosterone and Free T both modestly improved, to levels unseen in me for the past several years. And I seem to feel the difference, in terms of modestly higher energy levels and ability to focus for the first 3-4 days of taking Clomid, before inevitably experiencing a “crash” after which I put it on pause for 2-3 days. Estradiol has definitely spiraled up, which was anticipated and the reason why I wanted to stay on a low dosage of Clomid.
Thyroid: Free T3 and Free T4 barely improved with the treatment, and conversely my TSH lowered quite dramatically. It doesn’t seem that Armour Thyroid, now taken at 60mg/d, is having the desired effect.

Doctor recommendations:

  • Consider starting an aromatase inhibitor (e.g. Arimidex) to counter the spike in Estradiol, which nullifies some of the gains made in generating more Bioavailable and Free Testosterone.
  • Double Armour Thyroid dosage to 120mg/d

My decision:

  • Keep Clomid at the current dosage
  • Increase Armour Thyroid to 90mg/d (depending on how it goes, I will consider 120mg/d)
  • No aromatase inhibitor for now. I realize this high Estradiol (now 51) is a bad thing, but remain wary of aromatase inhibitors based on accounts of PFS sufferers who used AIs like Arimidex and experienced some severe and potentially irreversible side effects.

Hope this update was helpful; looking forward to any feedback!

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#13

hey @Kevin_NY , i’m a long term pfs user as well, may i ask the name of PFS clinician? here in italy they got not idea what is this crap is about…

#14

Hey @KeepingHard I replied with some info in PM.

#15

I am sorry to hear your story. And I am disappointed that you have been suffering such a long long time.

What is your doctor’s intention and thinking in suggesting this medicine, clomid? What is his reasoning behind thinking that this medicine can cure pfs?

Indeed the precise mechanism how finasteride causes pfs is unknown, but we already know that pfs at least consists of thousands of epigenetical distortions caused by finasteride. (cf. Differential Gene Expression in Post-Finasteride Syndrome Patients Skyler Howell, MD et al）Your doctor who is a long-time PFS expert probably knows it, too.

It is difficult for me to imagine how clomid is effective for such a grave state of affairs.

Anyway, I do hope you will be better!

#16

Hi @aki, Appreciate you jumping on the discussion here. Agreed, the above medicines are not a cure or anywhere close to it. I don’t know for sure what the MD who’s helping me thinks. But he listens to my story, how I feel about the condition, and looks at the blood numbers to issue recommendations. And he won’t blame me when I go for a lower dosage or say no to a particular drug to stay on the safer side.

There are a few approaches to dealing with being afflicted by this disease. 1) Ignore it and try to live like you’re normal. Maybe ok as long as symptoms are mild. 2) Acknowledge it and cope via various lifestyle enhancements and herbal supplements. 3) Seek help from a professional while adjusting treatments to a risk-taking level one is comfortable with.

I’ve done 1) for the first 13 years, but when my T levels dropped around age 37 and I started experiencing additional symptoms like difficulty to mentally focus and extreme fatigue, I was forced to admit something very serious was going on. Then I’ve tried 2) for the next 8 years, with no major breakthrough other than finding interesting methods to improve my sleep and digestion issues (I may post about those later). So as much as I never wanted to take any « hard medicine » again, it got to a point where I was mentally ready to seek external help from a MD who saw guys like us. This is how my experiment with 3) began earlier this year when I’ll be turning 45 and already lost many of the great things and people that used to be part of my world.

Above all I think it’s important to stay positive, be methodical when trying a new regiment, and use this forum and other channels to share any tips. God bless all PFS sufferers and for those fallen may they rest in peace. There’s no way I take my own life btw, been there before.

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#17

I agree clomid hasn’t been a consistent cure. But there have definitely been some interesting cases over the years, who had improvements on/after clomid. Forum user “Legendary” comes to mind.

While I agree it’s unlikely clomid will be effective for such a grave state of affairs, I found it highly unlikely 2-3 weeks of finasteride 1mg (in my case) could be causing such a grave state of affairs also.
The whole androgenic endocrine system is at least partly responsible for normal functioning of so many, if not all, biochemical processes. So as long as you’re well informed of the risks of clomid, it seems a comprehensible approach. Over the years many PFS sufferers have seen (often temporary) improvements of raising testosterone. But also worsening symptoms…

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#18

Kevin and PFS, Thank you for your courteous reply. I understand. The fact that some patients did success is important. I hope you will be one of them, Kelvin.

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#19

Hello everyone. I used Finasteride for 23 years from 22 years to 45/46 now I stopped a year ago and I’m 47 years old. Does it seem plausible to you to have a thick rubber skin on the legs, no muscle, joint pain and swelling especially on the legs? I don’t have the strength and the ability to do anything and the more I try to stimulate testosterone, the worse it makes me. I did CT, MRI, EMG blood tests, but I didn’t find anything except that my T is at 290 and ACTH at 76. It seems that my body is damaged by androgens. Do you think finasteride can do it? Give me some ideas please in Italy if you talk to finasteride doctors they will all laugh in your face. It’s as if my body got poisoned by androgens and couldn’t get rid of them these toxic hormones do damage everywhere it looks like a neuro degenerative disease…

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#20

Hi Legalmust.

here is my image about pfs. If you want to know about pfs, you can read some articles through pubmed and awor’s brilliant analysis in this forum.