10 months off... and getting worse?

Well, it’s been 10 months since I first headed to emergency room
thinking I was going to die, and having no idea that it was due to
finasteride. I’m 29 years old and started taking it when I was 26 or 27, for about 2 years with no side effects (that I noticed… but looking back, my irritability and depression were increasing, and I had inexplicable weight gain that just would not go away. Also, my girlfriend started making comments that it seemed like I shared her monthly estrogen cycle, like women will do when living in close proximity. Well… apparently I was, because this drug turns you into a woman!)

My AST/ALT levels were double normal range, indicating liver
toxicity, though no other physical signs were present for my chest
constriction, shortness of breath, etc. I was diagnosed with anxiety-
induced panic disorder and given a temporary prescription of Xanax
(which I did not even use all of); the panic attacks continued for a
while, but then around winter I felt like I was finally starting to
heal. The sudden panic attacks (which were almost guaranteed if I
had a cup of coffee – which had never affected me in the past)
slowly began to subside. I also noticed – which for some reason I
hadn’t before – that I had a small level of gynecomastia (“bitch
tits”), undoubtedly due to the finasteride, which I had been taking
for about 2 years before strange things started to happen.

Well, I thought I was finally out of the worst of it when, after a few weeks,
my liver enzyme levels checked out normal and my panic subsided
(though I still sometimes took GABA if I felt that anxiety was
setting in, and this natural supplement really seems to work just as
well as Xanax if not better, without the side effects)

However, over the past two weeks I feel like my gyno seems to have
gotten worse, my testicles seem to have shrunk (uh oh), and I have a
near-constant feeling of constriction in my chest, as if my heart is
either beating too weakly or too strongly. Honestly, I feel I may die before the year is over. In short, something feels
very “not right” – I just emailed my doctor about it to see if I can
get a hormone test done, or maybe check my liver again, preferably
both at the same time. I really think all of these symptoms add up
to a major hormone imbalance (5-a R deficiency, too much estrogen, or
both), but I was just wondering…

have any of you experienced this? Where you had been off of
finasteride for almost a year, seemed to be improving, and then
suddenly took a turn for the worse and felt like you were basically
wasting away? I can’t describe it, but I feel like my body is just
decomposing or falling apart. It’s not a good feeling.

Went to the doctor today, described all the symptoms and told him I feel it’s due to a hormone imbalance, and he just poo-poo’d it away. He ran some heart tests (since I told him I have a feeling of constricted chest or palpitations sometimes), then he said he was diagnosing me with anxiety disorder. I told him that I DO believe many of the symptoms I have (such as the chest pains) are associated with anxiety, but that I felt the anxiety itself could have a physiological/hormonal component to it. He immediately dismissed that notion.

He did say he would run a blood test just to be sure about liver enzyme levels (since mine had been elevated once about a year ago), free T4 (thyroid indicator) and the basics… but would not check DHEA, DHT, free T, or estradiol. I specifically asked about estrogen, since I have read medical studies which tie high estrogen to anxiety (among other things – such as my tender/swollen gynecomastia I now have)

He simply said “no, I do not think estrogen has anything to do with anxiety” and would not run a test for it. :open_mouth:

Why do I feel like I have to be the one educating a medical professional?? It’s really ridiculous considering my salary (teacher) compared to his.

And why don’t doctors seem to even take hormones into consideration when they are trying to find evidence of what is causing a symptom? It seems to me that, in many cases, it would be very logical to look at as WIDE a variety of blood elements [AST/ALT, serum T, estrone, estradiol, DHT, DHEA, cortisol, CKI, II, and III, etc. basically anything that could impact brain, heart, liver, kidney, etc.] as possible as the very first step, in order to eliminate several variables before coming to a conclusion. I understand not wanting to do more work than necessary, but still…

Im sorry to hear that this is yr current situation. However u cant continue to suffer because of an incompitent doctor. I dident get my sex hormones etc tested for a whole year and when i finally did get them tested after i changed doctor it turned out they were out of range as i suspected all along. Dont let yr doctor tell u its all in yr head, and even if this was all in yr head u would still stand alot to gain from finding out u were normal. If he cant even realize that a person with anxiety attacks have alot to gain even from a test confirming everything is normal, then he just isent doing his job. Ive been in yr situation so stand up for yrself and get the tests done even if that means going to another town for better care. Hopefully u will feel a change for the better soon. Best of luck.

Well, I have Kaiser Permanente and they SUCK. (especially out here in MD… they were much better in California)

So… I may have to end up paying to get one done myself. This one isn’t cheap, but seems to cover most of what I would need to know:

privatemdlabs.com/lab_tests. … earch=#793

Although… I don’t see LH, FSH, DHT, cortisol, or DHEA which I would like to know about all of these… even if I could just get a reading ONCE to see what it currently is. Then I would have SOME clue about whether I need to pursue a course of action immediately and the possible dangers I face if I don’t.

Oh, I see… I found it. For $900 :exclamation: :open_mouth: I can’t afford that. The price alone would surely raise my stress, anxiety, cortisol levels.

What I find extremely frustrating is that the entire medical community seems entirely focused on REACTIVE measures instead of PREVENTATIVE measures. So… they’ll treat you and give you what you need AFTER you’re already screwed up to the point where it’s an emergency. But they won’t do jack to prevent you from getting to that horrible state to begin with…

Welcome to the club, this is the problem for many of us as we try and figure out what is going on with us – doctors that don’t believe our case, and then refuse to even test for basic hormones that can be impacted by the drug (that we are aware of). Unfortunately blood tests are the absolute first step so you need to get them somehow.

You’ll need to make appointments with a bunch of other docs until you’ll find one who will give you the tests you’ll need. You can also suggest paying for them yourself, if you want to.

Estradiol is definitely related to feelings of anxiety/getting overly emotional in men. I had the same symptoms as did many other men on the drug – most of us had high E2.

If you are in the US perhaps you can just go to a lab and pay them directly without a referral/requisition form from the doc. Suggest you look into this as well.

I will definitely be looking into it. Even if it means shelling out some cash. I feel like I need to do this, and the sooner the better. Yes, I know people say you should do it regularly to keep checking in changes/status, but if my doc/insurance won’t cover it, I can’t do that…

The quote from this PrivateMD (which seems comparable to any other services) puts me out $500 to test:

Free T

for another $68 I could get Total Estrogen checked – do you think this would be a wise one to add on?

(the DHT check is the most expensive at $150, but it also seems an extremely relevant/important one for me to have done)

If you can, get Estrone, Estriol and Total Estrogens done. Also specificy Estradiol to be tested as “ultrasensitive”.

You also should get FSH, Prolactin, Bioavailable Testosterone and definitely SHBG… and a Complete Blood Count/Hematology Panel, as well as Thyroid panel (TSH, Free T3/T4)

Thank you… I saw some of those comprehensive blood test lists posted elsewhere already. I don’t see options for some them; my complete blood count, liver panel, and thyroid panel are fortunately being done today (I just couldn’t convice doc to add the hormones)

Basically, when I told him I feel that my breast tissue is swollen/tender and that my testicles seem to have shrunk a little bit, he checked them out and said that if my body hair patterns haven’t changed and that if I am still able to get erections, I am fine. I’m just not buying it, though. [By the way, at my worst moments – when I was still on fin and going to the ER – there were times when I actually felt and saw my penis and testes physically shrinking and retracting into my body…completely disappearing. It looked like a turtle going into hiding. Extremely disturbing.]

In the meantime, I have ordered DIM just in case (at least it seems relatively safe and harmless – I don’t want to mess around with powerful hormones if I can avoid it) but I want to know what I’m dealing with rather than taking stabs in the dark at what I should (or shouldn’t) do.

Thanks for the comments and feedback, Mew

Guru you forgot to do Progesteron test which in propeciahelp comunity should be the crucial one. Elevated progesteron can cause your symptoms and as far as I know is also related to the 5AR defficincy symptoms because elevated Progesteron seems to be a reaction to the problems with convertion to 5alfaprogesteron and finaly Allopregnolon. Conversion is possible if 5 AR existis. Lack of Allopregnollon causes your symtoms.

But as you noticed before it can be due to th 5AR defficiency.

Those neurological disruptions seem to be the cause of a DHT brain defficiency, causing progesteron not to be converted to neurosteroids via 5AR.

I wonder why Merck or Glaxo does not present any investication concerning possible 5AR genetic diaster/damage/mutation caused by the drug.

I can imagine it is possible especially after long period of time. What are your thought on this…

I haven’t been on this site for a while, and the simple reason for that is because I’ve been feeling better.

I’m not sure I’m 100%… I don’t really think I ever will be. Like any steroid, I think finasteride has the potential to do long-term damage, and I think I have probably shaved 10-20 years off of my lifespan in the long run. (I know fin is technically not a steroid but it messes with our hormones and steroidal compounds in a similar way)

I started Propecia, off and on, back in 1998 or so and used it intermittently until 2000; then I resumed taking it on a more regular basis from 2003-2006.
It did seem to help thicken my hair. When I took showers, large amounts of hair were coming off in my hand when I shampooed. That stopped.

One thing that slightly concerns me is that… my hair STILL seems to be staying put, even 2 years after stopping fin. I don’t seem to be losing it anymore. Most people would be thrilled by that idea, but it scares me because it makes me think that perhaps the fin permanently mutated or messed with my AR-5/DHT systems.

Anyway, my primary symptoms (which started occurring about a month before I quit – I couldn’t figure out they were being caused by fin until I eliminated all the other variables) were:

  • Fewer erections (still got them though)
  • Gynecomastia (this HAS NOT gone away, and I imagine it wouldn’t unless I got surgery)
  • Brain fog / malaise
  • Severe – VERY SEVERE – panic attacks. These were the reason I knew something was wrong; they were crippling and felt like I was dying. I went to the ER twice because of them, and nobody could find anything wrong… except my liver enzymes (ALT/AST) were also twice the normal maximum range
  • Possible musculoskeletal problems (my joints seemed to be much stiffer and weaker than they used to be; I retained a lot of fat or water that could not be burned off with diet and exercise; weaker/smaller muscles)
  • Dry eyes

I never had a problem with ED or sexual dysfunction, although towards the end it seemed like my penis was shrinking, and there were times when it literally started retracting inside my body for no reason; in addition, less ejaculate than usual started coming out.

In any case, I thought maybe the racing heart, etc. were being caused by 5% minoxidil I was using (topical), so I I dumped that [it is, after all, a heart drug so that’s what I assumed, especially after reading case studies online in which people have actually died from using topical minoxidil]; but the panic attacks continued, and I noticed they were much worse if I drank alcohol or even a small amount of caffeine.

Well, after quitting cold turkey in August 2006, I continued to have horrible anxiety and panic attacks for several months. Starting about February 2007, the panic attacks started to subside a bit. I could have up to 8 ounces of coffee or 2 beers without freaking out. Another interesting thing happened: I had weighed 190 lbs, a good 10 lbs heavier than I had ever been in my life (and it was due to fat, not muscle); I was overweight and could do nothing to lose it. After quitting fin, I dropped to 165 within 2 months, without changing my diet or exercise (165 being a weight I had not seen in 10 years; I usually weigh 175-180)

To make a long story short, the panic attacks started subsiding over time; sometimes I could feel one coming on, or I would be restless at night, and I would take a GABA supplement (supposedly these “don’t work” because the GABA can’t cross the blood-brain barrier, but the ones I used definitely did work, and felt equivalent to the Xanax prescription I had been given)

Sometimes if I felt like my estrogen was extra-high (don’t ask me how, I just sort of “sensed” it sometimes… and noticed my nipples/breast tissue would be more puffy, I felt more bloated, etc.), I would take a DIM supplement (I started with 25mg with Broccosinolate, and I found some cheaper 100mg ones later, but in all honesty the 25mg were much better than the 100mg ones); I’m pretty sure high estrogen was the cause of a lot of problems when I was on fin. I would be constantly craving brussels sprouts all the time, which even I thought was weird (brussels sprouts are a good source of DIM/IC3)

The only other thing I did during the recovery time was to start drinking green tea instead of coffee. It really seemed to have a “regulating” effect on me. I found, especially, that if I had a green tea in the morning and DIM in the afternoon, my energy level, anxiety, and hormones seemed to stay balanced throughout the day.

I tried some other things (valerian and melatonin when my anxiety brought on insomnia and made sleep difficult. Although they worked, something didn’t feel right when I took them, so I didn’t do it frequently and I don’t highly recommend them; I also tried DHEA since originally some forum-posters said it solves the problems, but it didn’t and it made my blood pressure increase and my heart race, so I dumped them in the trash.)

Anyway, my low weight has subsided and is now back up to my “normal” pre-fin range (170-175 now); I was occasionally having abdominal pains, so they finally did an ultrasound and found nothing strange with my liver or pancreas. I rarely get panic attacks now (they do still occasionally happen); I can’t handle alcohol like I used to, and I can’t drink a lot of caffeine (I started drinking caffeine-free green tea, then moved to regular green tea but would only drink 1-2 cups. Even green tea would cause my caffeine-induced panic if I had too much.) I can probably have 2 cups of coffee (or 3 half-decaf) before I start feeling jittery/panicky.

In any case, it seems like most of my tests check out okay, my panic is pretty much gone, my ejaculate seems to have increased. So I feel more or less “back to normal,” although everybody says your hair is supposed to start falling out again. Although I do not look forward to that, I’m a little concerned that mine isn’t doing that yet…

very good guru, i’m happy about your recovery… congratulation…
can i ask you what is your idea about the cause of the problem? (in your case)

The cause of the problem? Finasteride. :wink:

As to what the finasteride DID, I don’t know.

  1. My estrogen definitely increased. Even though I didn’t have bloodwork to show this, the gynecomastia generally proves it.

  2. I imagine my cortisol levels were way out of whack. This would explain both my panic attacks and, combined with the estrogen, would explain why I had so much sudden weight gain that I couldn’t lose (cortisol can cause weight gain/fat retention; estrogen causes water retention)

I had my thyroid bloodwork done and there didn’t seem to be a thyroid problem; the only standard blood tests that were ever out of normal were:

a) AST/ALT liver enzymes (but this bloodwork was done the morning after I consumed about 500 ml of wine) – it’s possible I was getting liver damage from a combination of light/moderate/social drinking combined with the hepatotoxic effects of Propecia (which did NOT have any warnings against consuming alcohol on the label or literature)
b) High cholesterol – At one point, my bad colesterol count was on the higher side, and climbing [this correlated with when I was very heavy]
c) High blood pressure – I was also diagnosed with borderline high blood pressure. It’s hard to say what caused this, as my job was very stressful, high blood pressure runs in my family (genetic), etc. High cortisol levels would also account for the rise in cholesterol and blood pressure.

I have a feeling my condition was a multi-part problem, which I think many of ours are, which is why it’s so hard to pinpoint any one problem or solution. When you adjust hormone levels in the body, the problems can manifest in different ways and different parts of the body. For me, I think the issue was a combination of:

  • high estrogen-to-testosterone ratio (I noticed I would usually feel fine in the morning, but a lot less stable as the day got later; probably due to high T in the AM and lowering T/increasing E as the day goes on)
  • possibly elevated cortisol
  • minor liver damage (possibly) due to 3 things: hepatotoxic finasteride; moderate alcohol consumption; decreased AR-5/DHT, which plays an important role in repairing/healing the liver. It’s even possible that the liver stress/damage could be part of the reason my estrogen levels were too high (the liver metabolizes out estrogen, so if the liver is not functioning fully, E levels could be higher than usual – and alcohol increases estrogen. Alcoholics sometimes develop gynecomastia)

thanks guru, i also have High cholesterol and a lot of abdominal fat that doesn’t disappear with diet and exercise, do you think that cholesterol can be the cause of this?

you talk about water retention and fat retention, how can i distinguish if i have the first or the second? :wink:

Any pain in your neck…? Does it hurt in the midday…? Do you feel better at night?

no, i have no pain in neck…
if you want, take a look at my full story, there are all the symptom and all the exams i have done

Just curious, could you tell us exactly what supplements you took? Thanks and good luck.

Just checking in after a few years…

I felt reasonably good in about 2009… my panic attacks have really subsided (but I am also careful not to overdo it with caffeine… 8 ounces of coffee per day, maximum… and not every day)

However, I’ve never really felt entirely healthy, and I don’t know how much of this can be attributed to the finasteride I took. One thing that started shortly after my panic attacks set in (and I had the elevated liver enzyme levels in my blood work) is that I would have dull aching pain in the general area of my liver (right side abdomen, just below ribcage). I don’t know if the pain is actually my liver or not – they did an ultrasound to check for tumor and found nothing, and blood tests (the few I’ve gotten) have come back clear (no elevated AST/ALT). Not sure if it could be stones or something to do with my gall bladder?

In addition to those occasional dull side aches (which occur sporadically, but have been persistent for years now at this point… the doctors don’t seem too concerned, though), I have recently had other strange problems… fairly frequent night sweats (these come on pretty easy if I drink alcohol, so I try not to consume very much), as well as a strange red bumpy rash I got all over my body for two weeks (this has never happened to me before), and now I am seeing small dark spots or moles suddenly popping up all over my skin. I wouldn’t be concerned about it, except – again – this does not normally happen to me and now suddenly I have 15-30 new moles all over my body, which have appeared in just the last couple of months. Many of them are in spots that don’t get sun exposure, so I feel like that’s not what is triggering it…

In any case, I feel relatively okay otherwise. My sexual function seems fine (my penis doesn’t seem as large as it used to be, and I don’t get erections as frequently. But then again, I’m also getting older, approaching my mid 30s now…) My panic attacks have subsided, but I still keep supplements on hand (GABA and “Theanine Serene” which contains L-Theanine, GABA, magnesium, Holy Basil Leaf, and Taurine) to deal with them if I feel one coming on or if I can’t get to sleep at night. My brain fog and mental instability seem to have gone away. My slight gynecomastia seems more or less permanent – my nipple areas are definitely more puffy than they ever were pre-fin, though they seem to be worse at night (low T time) and if I drink alcohol (which raises estrogen).

Oh yeah, and my joints are definitely not strong. In one week, I sprained my ankle – twice – then wore a brace on it, and ended up spraining the other one. Meanwhile, it appears I have developed a heberden’s node (osteoarthritis) on one of my finger joints…

I have this nagging feeling that finasteride has probably shortened my lifespan, but so far there is no concrete evidence of anything physically wrong with me, so I’ll just keep hoping I’m fine and doing the best to take care of my health (hard to always avoid alcohol now that I live in Napa…)

Hi guru,
what are you still taking and/or what have you taken in the past?

I currently don’t take very many supplements, but try to eat a reasonably healthy diet. Ever since I stopped fin, my blood sugar has been strange… if I don’t eat at regular intervals, or if I don’t get enough protein, I can feel my blood sugar dropping and I get light-headed, headaches, grumpy, etc. So I have to make sure to get a decent amount of protein every day, as soon as possible. If I consume alcohol or caffeine without having any protein and calories first, it really does a number on me.

As for supplements, I was desperate to get back to normal at first so I tried several… DIM, DMAE, SAMe, schisandra (actually an “adrenal complex” blend of supplements, mostly from Chinese medicine), melotonin (to help me sleep at night) as well as other sleep aids, like a blend that had valerian and passionflower…

I can honestly say that many of these made me feel worse, or strange in some way… some of them made my heart race, some gave me headaches or made me feel dizzy or stressed out – these mostly were DMAE and SAMe.

One thing that seemed to help a bit at first was taking DIM… I noticed right around the time I started having problems I was also retaining a lot of fat (or water?) and I think my estrogen was high. In any case, I was constantly craving brussels sprouts (which, like other cruciferous vegatables including broccoli, cauliflower, and cabbage, has DIM - diindolylmethane - which helps metabolize estrogen). I started off with a Broccosinolate DIM pill which seemed to work better than the other 100 mg DIM supplements I switched to later to save money and give them a try. However, DIM makes me feel a little strange sometimes too… it seems like if my estrogen “feels high” and I take it, it makes me feel better, but when I take it and my hormones seem balanced, it makes me feel worse. It puts me on edge a little bit, and actually kills my sex drive sometimes. I was taking it almost daily at first, but now I rarely take it. If anything, I prefer to get these supplements the natural way, by eating plenty of broccoli and/or brussels sprouts.

Melatonin also made me feel very strange and wouldn’t always put me to sleep… it’s like I would get drowsy about 30 minutes later, and if I missed that window, I would suddenly feel strange and unable to sleep. The valerian / skullcap / passionflower sleep aid works, but also made me feel very strange, spaced out… almost like being on drugs. With those, I would usually fall asleep, but often have very strange dreams and I would still feel tired or “out of it” in the morning.

So now the only supplements I take are occasional multivitamins, GABA/L-Theanine (if I feel anxiety or insomnia), zinc (usually if I feel like I am on the verge of getting sick) and other stuff for immune-boosting when I feel I could catch a cold or flu: vitamin C, echinacea, olive leaf extract, and astragalus. I occasionally (but very rarely nowadays) take DIM, and I have also been supplementing with glucosamine/chondtroitin (for my bones) and milk thistle (just in case there is anything wrong with my liver.)

I avoid excessive caffeine and alcohol, and I also notice I feel pretty bad if I overeat or (especially) if I eat too much greasy food

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Thanks guru,
have you recovered from your sexual side effecst completely or almost completely?
I guess sleep disorder etc. still persists a bit for you.