Thank you Legendary I think this thread have been a very positive thing for the PFS community.
Thank you Legendary I think this thread have been a very positive thing for the PFS community.
Did clomed and let work for you?
I see that Dr. Shalender Bhasin was mentioned in this thread (he’s a doctors on the PFS study in Boston). Would anyone recommend seeing him for Clomid or should I go elsewhere? Are there any side effects anyone has experienced from Clomid?
Is Clomid effective over time, or is it a constant process of cycling on and off it? Thanks.
No one knows the answere to this question because clomids use in men to increase or "restore"testosterone levels has not been tested in large studies. The drug was made to help woman get pregnant. That’s why when a doctor is giving it to a guy it’s being used as an off label purpose.
When I first crashed over 4 years ago and noticed that I had low normal T I went to about 10 diff endos until finally I found one agreed my T was low and who was willing to prescribe me clomid. The way he put it, most endos would say that as soon as u come off the clomid your T levels will fall back to being just as low as they where before u went on the clomid. But to make a long story short I did a 2 year clomid restart and I worked. It restored my testosterone both free and total to the normal range. Not low normal, normal normal.
Restored for the long run. Just in case I did not make thAt clear
5 alpha victim…Thank you for the response on this, I appreciate it. Are you still monitoring your levels through blood tests? Do you need to take Clomid again, or periodically? When you took Clomid, did you take an Estrogen blocker at the same time? If so, which one?
How are your sides overall now?
Thank you in advance.
In your 2 year clomid restart, how long were you on it then off it? Just wondering the protocol. Thanks.
Completely agree after reading through the entire thread. Legendary has been unbelievably generous in his output and by taking the time, truly insightful. Not sure if Legendary still checks this thread at all but would be curious to hear of his progress, and what he is currently taking.
I have been off finasteride 5 years (dealt with sides for almost 9 years), and tried going the natural route, herbal supplements, healthy diet, frequent exercise (cardio and strength) and am really looking for other options at this point. Never tried anything medically, besides seeing Dr. Bhasin and just getting blood tests recently. At a point where I need to try something for this maddening condition. Still have the same side effects from the “crash” period 5 years ago since stopping finasteride.
If anyone has a suggestion on an open-minded doctor (I am in NY) who is “treating” PFS (to some degree) I would appreciate that. Or even any advice on how to approach this condition medically, besides getting blood work done.
For those who have taken Clomid, have you noticed any long-term side effects?
I second the opinion and praise to legendary. He sounds like a normal, honest, and clearly sane person who has been very generous with us.
I learned from him to stop being afraid of things. I know we all got hurt by this one pill and have became very paranoid about taking any meds. But let’s face it: natural recovery is at best extremely slow (in years not months and not guaranteed at all), and the chances that we get a permanent side from some other pill is not as high as our brain tells us.
I have tried the following and do not regret the. At all: clomid, hcg, and progesterone.
I think the importance of legendary is that he did stick with the clomid despite the initial hard stage, many quit around that point.
My mantra has always been to try things, as from my experience this was the only thing that made a difference, and not time.
Agree, I did not feel any better until I got my T levels back up from sub 200 levels. Do what you must this isn’t an easy way to live.
Thanks for the kind words. I have a new update for you.
Firstly, for peeps who are new to this thread, the title of the thread is a bit unfortunate.
The truth is that Clomid has not played a big role in my ongoing recovery. I did use it at the beginning when we (my Endo and I) thought I had classic Secondary Hypo, but we quickly realised that my pituitary didn’t need stimulation per se, but rather that it was an overactive aromatase enzyme / elevated E levels that seemed to be shutting my system down. Hence the shift to Letrozole, an Aromatase Inhibitor. The side effects of Clomid were significant, particularly in terms of mood, and it also had noticeable effects on vision (!). Side effects from Letrozole are subtle, and I can’t really distinguish between Let sides and PFS effects i.e. the main issues that persist are fatigue, anxiety and flaccid shrinkage, particularly when stressed. Erect isn’t quite what it used to be, but not far off. Libido is good.
I’m all for a “natural” approach. I did try this for a year before seeing a specialist, but the truth is that my T levels literally didn’t shift one decimal point despite heavy gym / supps etc. So now I’m looking for the minimum effective dose to get results, along with supps, diet, exercise.
So here’s an interesting update on my condition. I feel like each time I’m forming new distinctions and getting closer to ideal treatment:
Recap: Back in September I noticed that lowering my E2 with Letrozole wasn’t always correlated with higher T levels. Endo suspected it might be Letrozole’s dual function of action that was spiking T levels (as per previous transcript from meeting) and not just the fact that E2 was being lowered. Endo suggested adding I3C complex to the mix, gradually lowering Let dosage and monitoring what happened. I3C complex = a natural supp containing DIM and Indole-3-Carbinol. I was skeptical of “natural” supps due to previous experiences, but value his opinion.
So as per the chat (again, see previous transcript), I initially did 3 weeks on 2.5mg Let per day to raise T, and lower E. I used previous test results as guide to keep costs down - previous results had me at about T: 34 / E2: 40 after 3 weeks on 2.5 daily Let.
Then I went onto 1.25 Let every other day + x1 I3C every day. After 8 weeks of this I re-tested:
T = 31,3 nmol
E2 = 75 pmol
SHBG = 23,7
Free T: 868
My conclusion was that T was holding well, and E2 seemed to be lower than it usually would have been. As a point of comparison, a previous period of 4 weeks in 2013 with Let 1.25 every day (not just every other day) had led to E: 98 and T: 21.9. So it seemed to me that I3C did have some efficacy in terms of E2 levels.
I decided to try just adding an extra dose of I3C every other day to see if it could lower E2 a bit more and then retesting i.e. 1.25 Let plus x1 I3C every other day, with x2 I3C alone on the days in between. I retested after 8 weeks.
T = 34 nmol
E2 = 55 pmol
Free T: 898
My conclusion again was that the I3C seems to have a real affect on E2 levels, they were down 27% just by adding an extra an extra dose of I3C every other day.
I decided to try dropping Let from the mix altogether and seeing what happened. i.e. just x2 I3C every day. I did this for 6 weeks and re-tested:
T = 14,4 nmol
E2 = 62 pmol
Free T: 330
As a point of comparison, stopping Let for 6 weeks back in 2013 resulted in a spike of E2 to 117 pmol, and a drop of T to 14. My conclusion was that I3C definitely seems to help keep E2 levels down, but doesn’t have the same effect of raising T levels as Let / AI’s.
So whatever the AI is doing to spike T levels, I3C isn’t doing, but it’s good to know that I can keep E2 levels under control with a natural supplement alone. I don’t think this is what my Endo was expecting, I’ve mailed him for his thoughts.
Will let you know when I hear anything more…
PS - Something that I forgot to mention is that about 4-5 months ago I started to develop Alopecia Areata on my chin. It’s now grown from a small dot on my chin and is all over my lower face i.e. I’m completely bald over my chin and a big area on my neck. Does anyone have any experience with this?
I did some blood tests that are standard for auto immune diseases, but all came back solid i.e. Iron, Thyroid and Androstenedione. (Androstenedione was high but in range)
All the best
our hope is that we can reach a point where we can and want to live a normal life (date, f*k, travel, sport,…) without having to think about medications to make us able/want to do to that.
I would go for one steady pill, for the rest of my life. I would live with that. So what I need to know from you: are you stable now> able to have a normal life? if so why are you too worried if T is fluctuating a bit? You still feel your energy and libido too low?
weird how you are tolerating Letro, it made all my symptoms worse. I have very low androstenedione by the way, …
I do have a normal life, but I also know that something is not 100% right. I’m infinitely better than when I crashed, but still not 100%.
Again, my main remaining issues are flaccid shrinkage, anxiety and fatigue. These all fluctuate wildly. Sometimes I feel great, hanging large, feeling chilled and have good energy, but most times it’s a sliding scale i.e. general anxiety could be at a 5, shrinkage at an 8, fatigue at a 3 etc. While all people’s levels of energy fluctuate, I know my body and I know that these issues are not normal for me.
The biggest concern, of course, is the shrinkage. Some times of day it is a non issue, and I feel pretty close to before all this started. But many times it shrinks up for no reason at all, goes cold and balls tighten. And I mean dramatically. This is not the way my dick behaves - I’ve known him pretty well for many years now. It does feel related to the general anxiety and obviously has a positive feedback loop by fuelling anxiety as well.
So I’m trying to get to the bottom of the fluctuations and find a sweet spot where things are as stable as possible. That’s why I continue to test and try things out - to get increasingly closer to ideal treatment for me.
But all in all, I am living my life and getting on with things. I’m certainly not crawled up in the foetal position on the floor. But the above issues do lead to extra stress and concern, especially in the area of romantic relationships.
Libido has always been pretty good and I’ve never suffered from true ED, he just ain’t quite what he used to be, and the “flaccid shrinkage for no good reason” thing is stressful. Things are at a manageable level, but I’m constantly looking to improve.
As an aside - the one condition (not PFS) that seems closest to matching my general symptoms is low cortisol. My cortisol is low and DHEA is low. I tried DHEA supps before, with little success. If anyone has any insights into these particular hormones, let me know…all the best
Same here on the cortisol deal. I been using off brand cortef. Its difficult to dial in. Like right now for example I am feeling anxiety just sitting here doing nothing. I could try to dose more cortef but I think it messes with my sleep. I have also felt pretty good here and there on low dose benzo’s but they come back to bite you later. They also don’t help fatigue.
Yeah funny you mention. In my fatigued depressed state, I dont shave much these days and I have a quarter size circle on my chin too where the hair sparsley grows. Still comes in good everywhere else. No idea why this is happening.
I dropped I3Complex from my routine (DIM and indole-3-carbinol). As I mentioned before, it definitely does reduce E2 by 25-30% (I tested this), but shrinkage was terrible during usage. A previous poster suggested that DIM can reduce DHT. I think that may be correct and may explain the shrinkage. (This is purely anecdotal.)
Good news is - I re-introduced 5000mg L-Argnine and 2000mg L-Citrulline into my daily supp routine. Previously I’d tried it before bedtime, now I tried it in the morning. It seems to have had a major positive effect on shrinkage. Hanging large and in charge at the moment, so that’s a huge relief. Pun intended. So between dropping I3Complex (DIM and I3 Carbonal) and introducing L-Arg and L-Cit daily, the shrinkage is well under control.
Anxiety is also down. Unfortunately fatigue is way up at the moment. You can never win, but I’ll take it for now.
I’ve been a bit erratic with the Letrozole intake lately, but will get organised, do a solid few months with limited Let, supps ,the Arg / Cit combo, retest and report back soon…
All the best
Speak to a guy called Jazz or Jazz1 on hair loss talk. He’s cured his areata and knows his stuff. He knows me as Monty bTW
Good luck and glad to see you’re still here and feeding back. Wishing your continual progress!
Also you may find agmatine worth doing some reading on!
Damn I am about to order some clomid at 25mg online. can’t find a Dr and endo won’t see me even with a refferel from dr…I can’t get help and my physical condition has declined almost beyond belief…Have gained 40lbs of just crazy looking fluid or flab like filled tissue around waist and stomach…love handles are like just swollen up…chest is the same just like legendary describes it’s not gynomasctia but just like water retention…I was a bean pole for 15years weighed 160ish…now 200lbs and been off over a year and only getting worse…Gotta try something before I kill myself this shit is almost unbearable…