there are few posts where sides appeared few months after quitting.
1) Do you think that there’s a slight chance that I’m having a “late” crash?
One of my side effects (puffy and swollen lips) didn’t appear until around 7 or 8 months after quitting finasteride.
It was around this time that my testicular shrinkage was at its worst.
I’m not a doctor, but although you may not have experienced a crash, i believe it may be possible that your endocrine system has down regulated somewhat since quitting finasteride.
If the result will show low T, LH, TSH, will that be considered as a crash since until lately I functioned pretty much ok?
Generally, a crash is an acute and rapid onset of PFS related symptoms.
From reading your posts, it sounds as if you have not experienced a crash, but rather a gradual decline in your health over the course of the last year.
2) What will best indicate if I’m running into pfs or not?
If you have persistent symptoms that continue for several months then this may be an indicator of PFS but you need to see a good doctor to check for possible health related problems, e.g. diabetes, testicular cancer, prostate cancer, chronic fatigue syndrome, liver dysfunction etc.
Hopefully i haven’t scared you too much but what i’m saying is you need to get checked out thoroughly by an experienced doctor.
Check the doctors section on this site and see a good doctor ASAP who can recommend the appropriate tests.
How will I know for sure that fin is the cause? It’s like I feel it is, but how will I know?
This will be dependent on the outcome of your tests.
3) The fact that I had a relatively good year after quitting - is that a positive or a negative sign?
The fact that you are having problems clearly indicates that something is wrong.
What if instead of getting better with time I’m getting worse?!
Follow the advice of your doctors.
See how it goes.
You can always come back and post here.
4) How exactly pfs treatment differs from not fin-related Hypogonadism treatment?
The treatments are similar, HCG/Clomid or Testosterone replacement therapy have been the usual treatments for PFS so far, but i’m not aware of anyone who has been fully cured.
There is medical research underway as per this thread:
viewtopic.php?f=33&t=6581
An update on this research is expected soon and will hopefully explain the mechanism/s that contribute towards PFS.
When the PFS condition is fully understood, then we should have a better chance of working towards proper PFS treatments.
5) Say I have pfs. How do I address an endocrinologist that has no idea what it is and explains to him/her the situation?
I wouldn’t mention propecia/finasteride to your doctor unless he/she specifically asks you.
If you want to provide your doctors with info on the side effects of finasteride, you could always print off some of the medical studies here:
viewtopic.php?f=33&t=6581
and show them to your doctor.
Does one of the famous American doctors who deal with it has a letter or a memo or something I can show a doctor in order that he/her will understand that fin is probably what causes my problem and that it requires special treatment? Since this syndrome considered as relatively new, I guess doctors in my country (Israel) wouldn’t believe fin can cause this.
I doubt that any America doctor would issue a memo/letter.
Over the course of the next few months, try to eat healthy organic foods.
Eat plenty of fruit and vegtables daily.
Avoid alcohol.
Avoid stimulants (including caffeine), grains (including bread and pasta) and sugar
Avoid excessive masturbation/ejaculation. Maybe once every 3 or 4 days to keep things working.
Try to get plenty of rest, at least 8 hours of solid sleep every night.
Moderate exercise regularly such as cardio, walking and light weight training.
Try to get outside regularly for plenty for fresh air.
Natural sunshine is the best source of vitamin d.
sunshinevitamin.org/
I believe there can possibly be many types of the “crash”. I had the obvious first one when I got off propecia. Several months later, after a gym work out had another "crash’. My hands got freezing cold, brain fog, no brain-penis connection, zero sexual function, also couldnt taste anything for a few days. After it lifted I actually had about a week of feeling like I was going to fully resolve. Then I had sudden extreme fatigue and massive low back pain and I was back to PFS.
Thank you all for your informative answers.
Well, I got the results.
Bad news first:
- Low LH: 4.5 (0.57-12.07)
- High, a-normal Prolactin: 515.5 (54-380)
- Low Vitamin D: 28.6
Things I suspect to be considered as good signs:
- Very high FSH: 13.7 (0.95-11.95)
- Very low TSH: 0.89 (0.35-4.94)
- Very low Estradiol: 54 (40-161)
Not so good but not really scary?
- Med-low testosterone: 14.17 (6-29)
- FREE T NOT YET RECEIVED (will update later on)
Things I completely have no idea what they are:
- Free T4: 15.47 (9-19)
- Total T3: 1.6 (0.89-2.44)
moral of the story… everyone who screwed with hormones except like 2 people either got worse or didnt change. get that sunlight for the vit D, besides that… radically change your diet and feed your body all the raw materials it needs… that’s the best course of action for now.
Seems reasonable, but one year after quitting and I’m getting worse. How will I know that the worse is behind me? Isn’t drug therapy (not hormone replacement) needs to be taken under consideration in order to stop any possible future decline?
And you all - Any insights regarding the numbers?
yeah drug therapy would be important to take into consideration, except you are basically gambling on your health with it. look around the forum… none of these hundreds of random drugs that people have taken have equaled a recovery. maybe there a few scattered, but the vast majority of people here are still at square one which is PFS and not changing. even worse, some people have taken these drugs and went from bad to way worse. it’s just not worth it unless you actually know what you are doing and researching your shit out and actually understand at a DEEP level what is happening (which takes weeks of research into one thing). don’t listen to the forum doctors here either that think they know what’s happening when on their member stories you read how their joints are aching worse than ever and they are unable to function normally.
you can do what you want, it’s up to you man and it’s your body, but i would radically, RADICALLY change my diet if I were you.
Let’s talk about my diet.
First of all, my chemistry blood tests results are GREAT. As for my hormonal, well… it’s “only” the 4.5 LH. As for prolactin, it can be related to stress. Low vitamin D is not a surprise since I’m avoiding sun most of blondes / gingers do.
I live in Israel, man. Our food’s quality here is between good and awesome 
Vegetables, tahini and generally more homemade food over junk outside… are all parts of a standart Israeli diet. This is not US where everybody eats McDonald’s all the time and if you buy cucumber at the supermarket you get some nyloned huge freak full of hormones.
Yeah, I am skinny, but generally in good health and been like that all my life.
I’m smoking and getting drunk every weekend and definitely not in shape, but as for my diet, well, can’t suspect at single thing.
yeah man so your probably in better shape then most people here considering other people who drink alcohol can not tolerate it at all. what i shouldve said was clean lifestyle… and food only fruits, veggies, and quality protein. that’s it. anything that has an expiration date goes bye bye. no smoking or drinking. gluten def. no no.
but anyway, this is just my tips for you to make long term progress, i’m not trying to say u have to do it… but i’m saying it’s the only proven thing we got… but good luck to u man on what u are trying to find here. peace.
First of all, don’t get me wrong. Your advice is most welcome, and even in PM most people (with treatment history) advise me not to think about drug therapy and lean on diet, exercise and supplements.
Don’t forget I’m still trying to figure out what’s going on.
I felt some improvement in the last few days. Still, These blood test results scares me and I’d like some insights from experienced users.
This result sticks out as abnormally high. Elevated prolactin can suppress Testosterone production and interfere with libido and erectile function as a result.
Did the doc or lab not flag this as abnormal? There are medications that can reduce prolactin levels, bromocriptine and cabergoline come to mind.
This may or may not indicate fertility or possible testicular issues. You should consider getting a fertility test done and further testicular investigations.
labtestsonline.org/understanding … h/tab/test
Did your doctor not flag this as an issue?
Prolactin:
Doctors are not so worried, saying that the fact it’s elevated can be relted to:
- Stress
- Time of taking the test. The insisted that a blood sample for prolactin test should be taken 4-5 hours after waking up, not 2 hours like I did.
- Brain tumor, though in this situation it doesn’t seem so reasonable since it’s hundreds high and not thousands high. Anyway, I was advised to take another prolactin test.
FSH:
Fertility test is something I needed to do years ago due to 4th degree of varicocele. But it’s not the fertility I’m scared of. It’s the ED. So since it’s not low or hypogonadal, I’m kind of ok with it for now. But of course I’ll take fertility test soon enough.
Mew, what do you think about the low LH?
As the doctors were asking, I took another prolactin test.
This time, I woke up at 05:40 and took the test at 09:50.
I turned out that my prolactin is normal: 209.5 mIU/L (54-380).
I’m still waiting for the free testosterone result.
Haven’t seen any endocrinologist yet since I don’t have all the results I need. When I do, I’ll ask for further testing, including SHBG, DHT etc.
I had some minor improvement last week and another decline in the last two days (ED). I can’t tell what I “did wrong” or anything. I just ain’t stable.
What I’m really worried about is the low LH.
If anyone could please share knowledge about low LH, its meaning, my combination of low LH and elevated FSH, natural ways to boost it / drugs / therapy / sport, I’d be glad.
Your LH isn’t low, it’s perfectly within range:
- LH: 4.5 (0.57-12.07)
I have read somewhere that the minimum LH for men in my age is 7.
I got the free testosterone results: 33.84 (31-142).
It seems low, but is it “in range”?
Guess this is the problem…?
Any thoughts, ideas, ways to treat - please share.
When I ask if my free T is in range I mean in range of my age, of course (27).
Since I guess it considered as low, please share how can I boost it.
Yesterday I had an appointment with a senior endocrinologist. He is a worldwide known american professor, made his m.d at the US back in the seventies, and also took part in trials for big pharmaceutical companies (like novartis).
I told him the whole story and gave him my blood tests results. I’d like to mention that I took another prolactin test and waited 4.5 hours after waking up - result is within normal range - 209 mlU/L (54-380). That leaves me, besides low vit-D, with “only” low free T (for now) and some not really great T (I guess).
Although he said he would never recommend to anyone, under any circumstances, to take propecia, he doesn’t really believe that fin is that destructive after quitting. He said he knows about the FDA warning, and read material about PFS, but he thinks that things “just don’t work this way”. Anyway, he doesn’t deny completely that there are some possible effects, but as for my situation, he thinks the same as Mew, that since the symptoms occurred relatively a long time after quitting could point that the problem could be found elsewhere.
He says that for now, nothing indicates a clear hormonal issue. LH, TSH, prolactin, Estradiol… all seem pretty good. Even my low free T hew says, is not necessarily low; we don’t know what was my pre fin condition (YOUR OPINIONS ON MY LOW FREE T, PLEASE). He also wants this to be double checked. And in any case, my low weight he says, can also “fool” free T results, since SHBG will always seems to be higher in slim men by mistake or something (didn’t completely understood, something about low fat… blah).
Again, same as Mew mentioned, the main thing that might point at some non fin related problem is my high FSH. He thinks that it has something to do with my 4th degree of Varicocele or some other problem with my testicles. Personally, I don’t really believe it’s true, since low T and varicocele are linked but had never proven. Anyway, he asked me to pay a visit to urologist and to take a fertility test. If the result won’t be ok, then to his opinion, resolving this matter might affect positively on any possible T problem.
And of course, that’s not enough. He also wants extra bloodwork, including DHT, SHBG and lots of other endo crap.
If the problem is not testicular nor will be found in other blood results, he says he might (“maybe maybe maybe”) consider short period of T injections OR Clomid to see if I respond well to extra T. Neither of us wants to go there.
Please, please respond.
I had some extra bloodwork two weeks ago.
I couldn’t get SHBG and DHT tests; nobody at my public health service (can’t really translate it) have no idea how to test them. I need to take these tests in a private lab or something.
Anyway, I should have taken the tests two hours after waking up, but I took them only 1:45 hours approximately after waking up, so I don’t know if that’s the cause for the crazy results I got:
Elevated progesterone:
- Progesterone 3.99 nmol/L (0.89-3.88)
- 17 OH-Progesterone 25.64 nmol/L (1.81-10.3)
Elevated LH, high FSH:
- FSH 17.5 mIU/mL (1.4-18.1)
- LH 10.14 mIU/mL (1.5-9.3) *** is that related to 40mg daily zinc I’m supplementing since the last bloodwork?
Good total T but low Free T:
- Testosterone 24.37 nmol/L (8.4-28.7)
- Free Testosterone 51.49 pmol/L (31-142) *** I don’t know about the other results, but since two tests show low free T I’m beginning to suspect that the problem might be here. I haven’t taken SHBG test yet, but it seems strange since I have low estradiol so I don’t know what exactly causes it.
Normal Values:
- Cortisol 392.0 nmol/L (138-690)
- Dhea-SO4 7.0 umol/L (2.17-15.2)
- Androstenedione 2.30 ng/mL (0.3-2.63)
- TSH 1.11 mIU/L (0.55-4.78)
- Free T4 12.89 pmol/L (11.5-22.7)
- Prolactin 203.1 mIU/L (45-375)
I tried to lower stress in the last few weeks. I can get it up with massive stimulation, but erection’s strength is far from perfect. Testicles are atrophic (and so said the endo, although he said “slight testicular atrophy” - doesn’t seems slight to me). Testes also hang very low (might be related to varicocele), although sometimes (relatively rare) they feel almost fine. Still low to zero sex-drive (I usually force myself to have sex or jack every two or three days). Generally I feel like shit, tired all the time and sleep a lot. I’ll spare you details about how I lost two jobs within two months. But I try to think about the good things: less anxious, orgasms are OK, generally sex is still kindda fun - even had two orgasms with a very small time gap between them last week. I have also read that some people here feel like shit after orgasms, so I’m happy that I don’t experience things like that.
I also took a fertility test and found out that I have absolutely zero percent of fertile semen, which related to my 4 grade varicocele. So the docs want me to fix it by surgery.
Varicocele surgeries are related with SOME post T elevation (you can guess who ordered these kind of trials), but the connection between varicocele and low T have never been proven. My urologist says not to get optimistic with that matter.
Anyway, again, I would appreciate thoughts and opinions.