New member - help needed

Hello everyone. I have been following your posts for a couple of months now but thought by sharing my story it may help me learn to cope with what is happening.

I am 26. I took finasteride 1mg daily for about 12 months, during which my hairloss stopped and I mostly experienced no side effects. Towards the end of the 12 months I noticed there were a couple of times I couldn’t have sex with my girlfriend - I just couldn’t get it up. This made me decide to stop finasteride.

That was about 8 months ago, and since then things have become much worse. And I didn’t know why I was feeling the way I was until I read your posts and realised that I could identify with many of you.

Basically, I have only 25% of my usual erection power. My penis is constantly inflamed at the tip and foreskin. Parts which used to be pleasurable are now sore to touch. Physically I feel tired a lot of the time. Mentally I am just as bad. I do experience this ‘brain fog’, where my head feels heavy and I can’t concentrate or think properly. But the worst is the anxiety. I feel nauseously sick with anxiety quite often.

So I went to the Dr for help. The first one told me it was all in my head. He gave me cialis to try (which works but it still hurts to have sex) and said I would get over it. He dismissed my propecia theories. I am an educated person and he really offended me.

Second Dr diagnosed me with zoons balanitis, an inflammatory condition of the penis. He said to try a steroid cream for 2 weeks and this would fix my penis discomfort and later should allow my erections to return, but so far no good.

So I went to a third doctor who is investigating further. He is a specialist physician, who I was referred to by one of the other Drs who decided I might have chronic fatigue syndrome. He doesn’t know much about propecia, but agrees its a nasty sounding drug. He said I was stupid for taking it (in a nice way). I have had many blood tests:

My Testosterone is in the normal range but at the low end of the scale. ie 16, normal range (11-40)
Free T is about the same, at the bottom end but with the normal scale.
My Estradiol is actually slightly lower than the bottom of the normal range.

But the Dr and I don’t know what to do next. Sometimes I feel like I’m in hell, other times I feel mentally strong enough to learn to cope with it. Occasionally I have felt suicidal from my symptoms and the apparent lack of help available from the medical community.

The one thing I do have going for me is that my girlfriend is very loving and understanding. Without her I would have given up by now. I just want to get better so I can be the man she wants me to be.

Does anyone have any suggestions as to where to go next? There are so many theories and treatments listed on this website, but is there a concensus on the best course of action and the reason why propecia has done this to me?

since you suffer from some anxiety symptoms maybe you should get your adrenals checked in blood tests

also ask your doctor to test inflammatory markers in these checks

Welcome and thanks for sharing your story.

Yes, it is a difficult thing to have to deal with, we all know what you’re going through… thankfully your girlfriend sounds very patient and loving, which is definitely a good thing… knowing that she cares about you despite any “issues” you may have.

In time you may also become a stronger person in character and spirit, as this “situation” forces many to gain extreme clarity about what is really, really important to them, in their lives. Hopefully this forum will be of use to you as a place of support and possibly, education.

In the meantime, action needs to be taken:

  • If you have not already, read FAQ at top of site.

  • The 3 bloodtests you have are a drop in the bucket. Get bloodtests as listed here.
    propeciahelp.com/forum/viewtopic.php?t=92

  • If you can, try and test for 5AR activity as noted here (actually this would be highest on my list to do):
    propeciahelp.com/forum/viewtopic.php?t=761

  • Consider seeing docs listed and trying treatments they might prescribe (hCG, Clomid) to boost your own T levels. Your T levels are mid range and unless you had a baseline taken before Finasteride, you will not know if those are your original values. You may in fact need to be operating on higher levels.

  • Consider filing lawsuit backed with research which you can obtain off this site.

  • Consider contacting university researchers with experience dealing with steroid metabolism/5AR/Finasteride/Androgen Receptor to see if they may be willing to investigate potential issues at the genetic/receptor level.

  • If you have no libido issues and only mechanical issues with obtaining/maintaning erections post Finasteride, I would consult with Dr Irwin Goldstein in San Diego (Urologist). Otherwise, Dr Eugene Shippen or Dr John Crisler.

  • Reasons for possible erectile dysfunction due to Fin are many… some ideas:

propeciahelp.com/forum/viewt … =5881#5881
propeciahelp.com/forum/viewtopic.php?t=1685

– also the studies at top of Sexual Side Effects section

  • As for anxiety, since the drug interferes with GABA-A receptors in the brain (via inhibition of Progesterone --> Allopregnanolone conversion, which normally acts on GABA-A), you may want to consult with a Psychiatrist to discuss this aspect of the medication’s impacts. This study should be a good starting point.

propeciahelp.com/forum/viewtopic.php?t=202

– discussion of the above:
propeciahelp.com/forum/viewtopic.php?t=1387
Also, propeciahelp.com/forum/viewtopic.php?t=668

Time is an ally, but it can only do so much. What really needs to be done is investigation by researchers to figure out what has changed. If you can find someone willing to help you, you may be able to find answers. In the meantime, suggest you read and compile research listed on this site (ie, Finasteride Studies section) so that you can prove your case when dealing with medical professionals.

The more you know, the more leverage you may have. Keep us posted.

Can you please rate your libido on a scale of 1-10 (10 out of 10 being best)

  1. Before you started propecia
  2. When you stopped propecia
  3. Now

well worried, my libido pre-propecia would have been about 8.5/10. Upon stopping Propecia it quickly dropped to about 4/10. Guess it hasn’t changed in 8 months since then. I still have some desires to have sex and get aroused by some images, but I just can’t get my gear to work properly. And when I take drugs to help it still doesn’t feel right.

thanks Mew and ruffneck for your advice. This sure is character-building stuff.

I will endeavour to get more blood tests as you recommended. I do also now know that my FSH and LH are both low (I scored ‘2’ and the reference range says ‘<10’) but I don’t know what to interpret from that exactly.
Also I know that my testosterone before propecia was 24 (11-40 normal range) but now it sits at 16.

Unfortunately I don’t think I can get to see the drs you guys mentioned as I live in Australia. I don’t know anyone here who knows anything about treating propecia after-effects.

Am getting more blood tests in the coming weeks so will let you know what happens.

My endocrinologist says low FSH and LH are fine as long as your testosterone levels are within range.

For example, if your LH is at 10, but your testosterone is at 200 (sorry im not putting any units, just an example), then your pituitary gland is pumping a lot of LH because your testicles are not responding to that LH to make testosterone. This is called primary hypogonadism.

However, if you have low levels of LH (say 2), and your testosterone is at 300, that is “good” because your testicles are responding well to a low level of LH. His analogy was that you need less oil (i.e. LH) to run your engine (i.e. testosterone).

Many on this site have blood work that falls “within normal range”, but have clear symptoms. I wouldn’t get too hung up on the numbers because they don’t seem to correlate definitively with symptoms.

However, you are a rare case because you have your testosterone levels measured before propecia, unlike many others on this site. Can you post the exact values of your blood work (with units and ranges) before propecia and after propecia please (post it in the Hormones section)

for what is my opinion I think (if problem is just hormonal)that we are inside range,but we had a T drop … that’s the reason of many of our problems in my opinion … I was on TRT but it didn’t work,but i also think that it didn’t work because the doc that prescribed it to me,didn’t block the aromatasi …infact I had higher T but higher E too…and when i stopped med my T dropped more .

Than I think we have to boost from brain/ipophisys (xyrem) or from testicles (clomid etc…)…