aj72's story

0) Where are you from (country)?

USA

1) 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?)

I don’t remember – I’ve been aware of this group for awhile now.

2) What is your current age, height, weight?

40 years old, 6-foot, 190 lbs

3) Do you excercise regularly? If so, what type of excercise?

I was so-so regular before my crash, mostly biking. I picked up weights again just after my finasteride run, in April/May. Since my fatigue onset in June, I’ve restricted my exercise.

4) What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)?

You could describe it as semi-Paleo. I’ve been eating this way for a few years now.

5) Why did you take Finasteride (hair loss, BPH, other)?

Hairloss.

6) For how long did you take Finasteride (weeks/months/years)?
7) How old were you, and WHEN (date) did you start Finasteride?
8) How old were you when you quit, and WHEN (date) did you quit?

One or two very short runs years ago; but then the main run was mid-January through mid-April of 2012. I turned 40 during that time.

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

I guess I quit cold turkey.

10) What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic?

I think it was generic.

11) What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?

1.25mg/day.

12) How long into your use of Finasteride did you notice the onset of side effects?

That’s hard to say – the cause/effect was more complicated than that, with other possible causal factors. My sexual function was fine until four months after I quit, at which point I started TRT – and since that week, my libido has been low. (see my story for more info)

13) What side effects did you experience while on the drug that have yet to resolve since discontinuation?
(My sexual symptoms did NOT occur during the drug, so they aren’t listed here.)
Put an X beside all that apply:

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

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

Physical
Penile Tissue Changes (narrowing, shrinkage, wrinkled)
Penis curvature / rotation on axis
Testicular Pain
Testicular Shrinkage / Loss of Fullness
Genital numbness / sensitivity decrease
Weight Gain
Gynecomastia (male breasts)
Muscle Wastage
Muscle Weakness
Joint Pain
Dry / Dark Circles under eyes

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

Other (please explain)

14) What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?

I’m taking a lot of methylation-related supplements, and also addressing several nutritional insufficiencies I discovered. I also made changes at work to reduce stress. Somehow or another, the fatigue faded and I now have pretty much all my energy back.

15) 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)?

My only previous results come from 2008 (long before my main finasteride run). From 2008 to post-finasteride, there’s a modest decline in T and thyroid, but nothing severe. (My results are in my story, below.)

[b]16) Anything not listed in the above questions you’d like to share about your experience with Finasteride?

  1. Tell us your story, in your own words, about your Finasteride usage and side effects experienced while on/off the drug.
    [/b]

First, thanks for reading this. I don’t know for sure this is PFS, and am looking for opinions. There were other factors that could have contributed, which until recently I assumed were the cause: emotional stress, work stress, nutritional issues. But the late-developing sexual side effects are harder to explain. I’m hoping for insight from you guys as to whether this could be PFS.

As shown above, I’m 40 years old.

5-6 YEARS AGO

I first took finasteride maybe 5-6 years ago, very briefly. I think I remember getting a hint of sexual side effects, and quickly stopped. Sexual function returned to normal.

I also began having vague health issues back there somewhere. Occasional sleep problems, and kind of a constant feeling of agitation. These values (and others) were drawn in 2008:

  • Total T: 581 ng/dL (250-1100)
  • Free T: 83.3 pg/mL (35-155)
  • % Free T: 1.43% (1.5-2.2) (LOW)
  • Estradiol: 47 pg/mL (13-54)
  • SHBG: 29 nmol/L (8-48)
  • DHT 51 ng/dL (25-75)
  • IGF-I: 206 ng/mL (106-255)
  • many others, less related

We didn’t treat T. And those symptoms have been there off and on for years. Sexually though, everything was fine until recently.

STARTING FINASTERIDE IN JANUARY

By late last year, my hairloss was worsening. A respected hair surgeon strongly recommended I take finasteride before/after surgery. I was vaguely aware of this forum and took it seriously, but I had several misunderstandings about PFS.

I asked the surgeon if, among his many patients, he’d ever seen irreversible ED. He basically said ED can happen for any number of reasons, and that you guys all probably just had bad timing and blamed the drug. I still didn’t feel good about it, but I felt pressure to address my hairloss, I felt it was unlikely he could be unaware of these problems, and I felt it was unlikely he’d outright lie about it. I decided to just trust him.

So mid-Jan, I started finasteride. Simultaneously, I experienced some really awful things in my personal life. I felt horrible emotionally for the next few months, but it was a very… ‘physical’, crushing experience of those emotions. I blamed the events themselves, and had no idea finasteride could potentially be related.

In mid/late April, I realized my pecs felt a little poofy. I found out finasteride could be related, freaked out, and quit. Throughout this time, my sexual function was fine, as best I could tell.

Throughout Jan-May, I increasingly felt crappy and fatigued, with low stress tolerance. I assumed it was due to the emotional issues, plus work stress was accelerating.

MAJOR FATIGUE

But in June I came back from a stressful international business trip, and promptly began to crash into exhaustion. For the next 2+ months, I struggled to make it through the work week, spending all my evenings/weekends in bed trying to recover my energy so I could do my job. My legs had a burning sensation when I fully relaxed them. Sometimes they twitched.

After several weeks of this, I saw my general-purpose M.D. He found nothing except low-normal T. I went to a TRT doc, who pulled:

  • 375 ng/dL total T (292-867)
  • 6.4 ng/dL free T (4.8-25)
  • 43 nmol/L SHBG (16-94)
  • sadly, no LH, FSH, E2, DHT…

We did T replacement for three months (late July - late Sept).

The fatigue and leg muscle symptoms began to resolve in August, possibly through stress reduction and correcting some nutritional deficiencies. Energy-wise, I’m doing pretty well now.

SEXUAL SYMPTOMS

But it was 2-3 days after starting T therapy in late July that I began to have sexual issues. Weak libido, erection doesn’t last long, orgasm isn’t terribly strong. This was ~4 months after quitting finasteride. And four months later, I still have these issues.

The TRT went on for three months before the doc finally pulled followup labs. We saw my T had actually gone slightly down. The doc was confused, and we lacked LH/FSH draws to determine primary/secondary. I interpreted the drop as suppresion of my own T production, and pressed for hCG treatment.

So I’m now in the second week of a Shippen-style three-week hCG challenge (400IU/day, Mon-Fri). The first week showed some really promising signs in how I felt (emotionally, well-being, etc.) Sexually, there were hints of good signs, but less than I’d hoped for. This week the positive effects seem reduced, and I’ve been experiencing some uncomfortable side effects.

QUESTIONS I’M HOPING THE BOARD CAN HELP ANSWER

  • Is four months after quitting finasteride an unusually long period before beginning to experience sexual symptoms? It seems to be longer than most guys experience.
  • How common is it to experience emotional effects without sexual effects? (because my sexual function was fine throughout the whole deal)
  • Could finasteride sort of ‘set the stage’, and then T replacement somehow trigger sexual issues, in such a way that higher T levels couldn’t revive? (Note that I bounced back to 463 total T three weeks ago, after partially tapering off TRT, but still had these symptoms.)
  • Is it somehow dangerous for me to pursue hCG treatment of this kind? I haven’t seen this on the board anywhere, but after seeing all the other wacky things that can happen, and experiencing some mild testicular (and maybe prostate?) pain today, I’m a little freaked about continuing.

Thanks for your time.

Hey AJ. Sorry to see you on this board, but perhaps I can offer a similar account of my situation as a comparison to yours.

I started Propecia 1.5 years ago in the spring of 2011 as prescribed by a dermatologist for hairloss. I was 43 at that time. After about 6 mos. on the drug I noticed a slight decline in both libido and morning erections, so I quit cold turkey. After about 1 to 2 weeks, everything seemed back to normal. However, 2 months later, my hairloss really seemed to be ramping up again, so I went back on the drug from March till about June of this year. During this time, I noticed no side effects, but like you my chest started appearing slightly fattier than normal. Some time in June I also started reading articles in Men’s Health magazines about potential persistent sides and Dr. Irwig’s study. So again, I quit cold turkey. Almost immediately afterwards I started to notice shorter nights sleeps and loss of morning erections. After a couple weeks, my sleep was a mess and I started waking up frequently during the night. I was freaking out, to say the least. I also had what has been described as a typical crash, where I had a 1 to 2 day return of libido and erections, but after day 2, my sides returned and got worse.

Since that time, I went to a primary care md, a Uro and an endo. My Total T has been measured at low-normal (464 for a range of 300-1100), while my SHBG has been high at 72. I was prescribed TRT, but never went on it, based on feedback from this board, so I dont know if that would have helped. Still waiting to decide if I should go on it. I’m only taking Vit D and fish oil, as well as a low level zinc supp. I had the muscle twitches for about 2 months, but those are almost all gone.

Today, nearly 5 months post crash, I have no to low libido, few spontaneous or morning erections, but common nocturnal erections. Prior to any of this, I was a typical horny male. The one improvement has been my sleep. I still wake up a couple times a night, but I can usually fall back to sleep comfortably. At my worst, I was getting 4 hours of sleep. Today I can piece together about 7 hours and feel pretty rested most mornings.

The worst thing now is not knowing the long term outcome of my sexual sides. Five months seems like a long time, but I’m trying to be patient and optimistic. I’ve also been able to lift weights during most of this time, so that makes me feel somewhat good about myself. I would like to find a good doctor that at least acknowledges this condition, but so far I’ve not been impressed.

Not sure any of this helps, but at least I can see some similarities between our conditions. I hope for the best for both of us and encourage you to stay positive, but I also know that some days, that is not easy.

Take care and feel free to reply.

Thanks OhioGuy. I’m sorry to hear your experience, as I am about everyone’s. It’s terrible.

I never really paid attention to nocturnal erections, so I don’t know how they were before the fin. I don’t think they were very good during. I’m not even sure they were there pre-fin, either. But on TRT and hCG, they’ve been pretty good.

I still find it interesting my sexual sides didn’t show up until FOUR MONTHS after I quit fin – this seems later than most anyone else’s story I’ve heard so far. And, they only came after being triggered by TRT, again different?

Well, I’ll be diving into these forums, trying to understand what we believe about the cause, and what people have tried in dealing with it. I don’t really know what else to do.

BTW, if anyone knows an open-minded endo or urologist in Texas, let me know! Finding someone with PFS experience is almost surely impossible. Finding one willing to try, and open-minded, is still improbable, but maybe not impossible.

texas, perfect … i would consider seeking out dr. mo khera … he said he has had success in treating patients with pfs and you happen to be close to him … i was considering seeing him myself, but i do not live in texas and cannot afford to go there

i am sorry you are here, it is a drag, but there are good things going on because of some real good people with the goal of bring us some relief, so stay positive

Thanks Lennon!

Being at Baylor Med, he’s in a position to have an impact. I’m still absorbing the forum before making any decisions, but he’ll be on my shortlist.

I’d like to look into seeing Dr. Khera. I’m not sure how else to get all the blood tests ordered, and I’m not sure who I could get to prescribe most of the other things I might want that have helped some guys. I do currently have access to Armour thyroid, TRT, and hCG, through a “TRT doctor”, and so I could possibly try what I understand m_81 to have successfully done – increase thyroid meds and then increase T. Haven’t ruled that out.

Dr. Khera is a few hours away from me, so I’m hoping to learn a little more before I dive in. Does anyone know anything about his approach? What does he believe about the underlying etiology of PFS? How does he usually treat?

For me to trust a doctor, it’s important for me to believe they actually understand the underlying physiology, and that they make smart treatment decisions within that understanding. In contrast, most M.D’s seem just really good at following instructions, so heaven help you if you have a problem that falls outside their little box.

The fact that Dr. Khera is in a university setting is potentially a very good sign, and also the fact that he even takes on PFS patients, let alone has had some success. Just wondering if we know anything more than that?

AJ,

Just an FYI … I sent Dr. Kehra an email after finding his name in this string. In it, I described my situation and asked if he could recommend a Dr. In my area. I didn’t expect a reply, but surprisingly he emailed me and followed up with a phone call. He is a urologist, and should be able to order the tests you need. He sounds interested, if not focused on our condition. He mentioned his approach and protocol to target low DHT levels, following Propecia use. He does not sound in favor of prescribing TRT for our symptoms. However, our discussion only lasted a few minutes, so I don’t want to speak for him. You may want to do your own research.

Good luck.

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Yes, since posting I had a similar exchange with him. I definitely appreciated his willingness to talk. I made an appt in January.

What I picked up from the conversation is that he likes to treat PFS with hCG (which could jive with your comment about TRT). And he mentioned Arimidex to control estriadol. He says this has brought some success. He had a specific theory in mind about the etiology of our condition, but I didn’t catch it completely.

Of course, when I took hCG a month ago, the second week seemed to go bad (testicular pain, maybe prostate pain, total libido loss), so I’m not sure how I feel about doing it again. But at least he knows more what he’s doing with hCG than my last doctor, who had no prior experience with it, and as a urologist he can better investigate the pain I had.

I mentioned to him a couple things I’ve picked up on this forum, including that dexamethasone has appeared to bring semi-recoveries for some guys. He seemed interested by that idea, and receptive to the idea in general that anecdotal experiences from this forum could potentially inform more formalized treatment approaches/theories. But I don’t think dex is going to be his first treatment choice. I’m thinking about squeezing in a dex run before my appointment in January, if I can figure out how to get a doctor to prescribe it.

aj - I, too am going to see Khera in January!! I hope the combo of HCG and Arimidex will help. I think he does additional testing; not sure what? I have a script of clomid I may try before going to see him.

Wish there were others who could share experience with him. How did YOU hear about him?

Hey blakes33 – just saw your post now, I didn’t see an email when it happened. I only heard about him from Lennon, above.

I had my appointment with Dr. Khera in Houston last week, and wanted to give an update.

First, some things I absolutely appreciate about him: he’s an advocate of our cause, believes us, understands the physiology, and has some awareness of the going PFS theories. Immediately that makes him stand out.

He’s a urologist, and so he sees the problem through “urological goggles”. Our issues aren’t specific to urology alone, so this is a bit of a limitation. (Not unique to him, of course.)

He’s extremely focused on hCG as a treatment. hCG+Arimidex+Cialis. (And carnitine+arginine.) If you aren’t open to hCG, I would really suggest you think twice about seeing him, especially if you have to travel.

Because I had a bad experience with hCG a couple months ago, I want to try other things before trying it again (and maybe wait for some research to come out this year). I informed him of this a couple days ago, and he essentially said “That’s fine, just let me know when you’re ready to try it” – apparently going into ‘waiting mode’ until I change my mind. He’s offered no other ideas for treatment. I’ve now suggested to him (this is all via email) several things I want to try, based on what has worked for guys on this forum – we’ll see what he does, but I get the sense he may not cooperate with me. I didn’t know this going in.

I asked him how many PFS guys had lasting benefit on hCG (defined as 6+ months). He said he’s tried it on eight guys; only two have shown lasting benefit.

When I signed up with him as a “PFS patient”, he immediately scheduled me for a penile duplex (ultrasound) and biothesiometry (sensitivity), before we’d met. I “passed” all the tests – so no issues with the plumbing. This didn’t surprise me much, since I’ve mostly had good nocturnal erections, and haven’t noticed lack of sensitivity. My issue is more with desire and erection response, depression, anxiety, minor muscle wasting, and poor reactions to raising T (which if it weren’t for PFS, I’d be doing right now).

He did a battery of blood tests, which included everything I was keen on, except allopregnanolone and 3-adiol-G. The short version was that my T looked as it always has (low-normal total, very low-normal free, DHT looks proportional to T). But my progesterone was non-existent. Still, it looks like he isn’t interested in supplementing it (although he acknowledged that progesterone and allopregnanalone levels were ‘very important’.)

If he doesn’t work with me besides hCG, then I’ll have to go it alone again. That’s a disappointment, b/c the whole reason I spent a bunch of money travelling to see him was to get a good doctor in my corner, as we tried treatments until something worked. But I’ve repeatedly found that to become well, you have to take control and maneuver through/around our medical system as much as is possible, to get what you need. I’m glad to add another weapon to my arsenal of getting around doctors: unitedpharmacies.com. I intend to try several things I’ve seen work for others on the board, before I decide to roll the dice on hCG again.

Thanks for the update AJ. I noticed there was no mention of Clomid as a treatment offered by Dr. K. Did this come up in any conversation with him?

Also, how did he respond to your account with hCG, since that seems to be a part of his approach?

Thx.

No, Clomid didn’t come up. My tendency at the moment is to avoid meds in favor of natural substances, where possible. I don’t really know what his response to this would have been; my guess is he would at least try to persuade you to try hCG instead, since it’s where his experience is.

He believed my negative account from hCG, and he’d heard of such things happening before. He didn’t know why I had the symptoms I did. I was hoping the answer was somehow an acute onset of estradiol, which would mean that Arimidex would counter it – but he said, probably not.

To recount my experience with hCG… the first week I felt really good in some ways I hadn’t expected. Then in the second week these positive effects disappeared, I had testicular/prostate(?) pain, and I fell into a really dark depression – all in a two-day period. The drop was so bad/scary that I quit after those two days. Of course, I don’t know for sure what would have happened if I’d stuck it out a few more days.

I actually haven’t taken the Cialis, either. I did some research and found a couple long troubling stories from guys saying their eyesight/hearing had been affected, permanently; a side effect that is well-acknowledged as a possibility from official sources, which is more than we can say about finasteride.! It felt like deja vu, and I intend to learn from my mistakes. It also doesn’t seem to me it would help much, given my symptoms.

But a few days is unlikely to do harm… I may still do a one-week run, just to see what happens. (This is the ‘daily’ version of Cialis.)

thanks aj72.
a lot of people have tried already what you have tried or will try, including progestrone cream. please search this forum for progestrone. I also mentioned the same PFS syndrome experienced by ladies who used progestrone based IUD and their real problem starts once IUD is taken out. The best thing is , instead of spending thousands of dollars on traveling and trying the treatment which never worked, donate to pfsfoundation.

I did research the progesterone (although that female thing I missed – I’ll definitely check into that one, thanks!). It was rare on this board that I saw guys tested low in progesterone before supplementing it, though. It makes sense to me to restore something that’s missing – although there are still many other caveats to watch out for.

Regarding doctor vs. research… I hear what you’re saying, and I agree with your point. But I also think it doesn’t make sense to do nothing in the meantime. My list of things to try is simple and inexpensive – thyroid, dexamethasone, deprenyl, etc. That’s easier to do when you have a relationship with a good PFS doctor. Even if you don’t try things, we’ll need that doctor someday anyway if the research turns stuff up.

We also still have unique aspects that may not be accounted for by PFS. As an example, low progesterone seems rare on this board – maybe the research isn’t going to explain that one. Even the fact that a few guys have responded to raising T justifies maybe trying it, IMHO, until you find out that it won’t work for you.

FWIW, my expenses were <$1000, the majority of which were the penile/blood tests; which at least counted toward my deductible. (He’s in-network on my insurance, another plus!)

But again, I completely agree that the research is where much/most of our hope lies, and that we need to donate.

BTW, he replied back now that he’s willing to help with other treatments. So although he doesn’t have his own list of things to try beyond hCG, he’s flexible to try other things. I’m very glad to hear that.

He also mentioned that none of his hCG guys ever got worse.

IMO, There is an imbalance or progesterone receptor problem in the brain. I am the leading advocate of this theory and have been preaching it for months. In fact take a look a a new study that was published on December 29, 2012. It is the ONLY theory that can adequately account for all our symptoms. Unforutnately this falls within the purview of neuroendocrinology so a urologist will not be too helpful. However, I have heard of one account, propeciashiz, that has been helped by HCG

An update.

I’m on a run of dexamethasone – one week on, one week off, one week on. 0.5mg at bedtime. I’m doing this because my perception from the boards is that some guys have been helped by it – almost as if the brief time on it accomplished some reversal (if partial) of the androgen resistance. The benefit seemed to come within a few weeks of quitting. I figured it doesn’t hurt to try this before trying anything else.

Although how I feel ON dexa isn’t as important as what happens later (IMHO), I can say I’ve clearly felt a little better this week – mood and energy mostly. Libido hasn’t really been helped (still at what I call a “30% level” of normal), but once erect, it’s much easier to keep it. Slept horribly! The effects seem to be tapering off, as I would expect.

After the dexa, I’m not sure. Dr. Khera is still encouraging me to try hCG. I might do so, at much lower levels. I also have some interest in deprenyl.

Finally, an odd development… I had my serum copper and ceruloplasmin tested last week. Both are very low normal, with a calculated free copper that’s way above range. This is a marker of Wilson’s Disease. Wilson’s is kind of complicated, but the net effect is hazardous copper toxicity in certain tissues, especially liver and nervous system. I don’t really have a traditional Wilson’s symptom set, though. But it could just be early. Wilson’s could theoretically be related to some of my symptoms. I’m working toward getting an appt with a Wilson’s doctor, to confirm/deny it.

who has prescribed you DM?are you under supervision of your Dr?

Have you done a 24hr Saliva Cortisol test?

I have the same low ceruloplasmin and copper and was told it’s most probably because I have adrenal insufficiency.

Not since PFS. I did one in 2011 and it was back in range after having been low a few years. Seeing how I’ve felt better on dexamethasone, it’s had me thinking of doing one again.

When you say it’s the same, exactly what amounts? Wilson’s can be life-threatening if not treated. Mine were:

Serum Cu: 77 ug/dL (72-166)
Ceruloplasmin: 17.7 mg/dL (15-30)

Free copper is estimated by multiplying the ceruloplasmin by three and substracting from total serum copper. (This is because every 1mg of ceruloplasmin contains ~3ug of copper; and serum copper is free copper + ceruloplasmin.)

So: 77 - 3*17.7 = 23.9ug/dL (5-15)

High free copper and <20mg/dL ceruloplasmin are very suggestive of Wilson’s, but not at all conclusive. Needs more tests.

I do see some correlations in Pubmed between cortisol and serum ceruloplasmin; but I don’t think that explains the excess free copper, only (maybe) the low ceruloplasmin.