10 months off... and getting worse?

Member Stories
#12

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)
#13

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:

#14

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

#15

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
:wink:

#16

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

#17

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…)

#18

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

#19

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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#20

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.

#21

I feel the same way. before SP I was able to live without food for 8 - 12 hours with full energy but now , I become very weak and strange (hypoglycemia?)
you also mentione dull pain on the right side under your ribs, this is exactly what I have. My doctor suspected duedonal ulcer and reffered me to specialist. He put me on 80 mg pantaloc, did Endscopy and found nothing. Maybe masked by pantaloc. Any way I still have it but at lower intensity.
So in short you did not recovered, but improved, this makes me think all 5AR inhibitors are poisons and it is very hard to go back to normal.
You also wrote you are approaching late 30s and getting older, no way, you are young.

sps

#22

Isn’t that where the liver is located? Did he perform any liver tests?

#23

There’s definitely something to this IMO. It takes more food and the exact right types of foods to give me just a fraction of the energy I used to have. Probiotics have seemed to offer a little help in the energy department. I always do my best work between Noon time and the end of the day. I feel the need to consume much more than normal the first of half of the day still.

This side just adds to the complexity of what this poison did to us.

#24

tissues / cells are loosing minerals fast. simple is that. We have got very unique kind of osteoporosis, it is at cellular level not at hormonal level. our DHT is not entering into cells so we are having muscular degeneration or atrophy.

1 Like
#25

Guru20, where do you live?

#26

I haven’t been on here for months but Ive decided to post in this thread. I find it amazing that you guys also mentioned what its like if you don’t eat. I have exactly the same symptom. I’m very unaware of my body but i swore that i shouldn’t be that screwed if i didn’t eat. I feel all weak, drowsy and strange if i don’t eat these days. Since i was so young, i don’t remember what its like to be normal so i don’t have a baseline.

I would also like to pass on some news about how i’m going, will post under my name

#27

Hey Guys. I have similar story as well you can probably check out my post. I am also pretty much back to normal.
Just like Guru , I had really high liver levels that is how I stopped taking propecia. I went from being the healthiest guy in the world to having extreme anxiety. It was like a swith was turned on. I went several years until this year I can say that i am back to normal.

One big change in my diet that i would recomend is to stop drinking coffee or drink decaf. I dranked for years 2 big cups of regular coffee in the morning. As my ordeal began I decided to stop with the coffee and began to drink decaf. After a a year i began to feel better and one day they gave me a regular coffee. I instantly began to feel really light headed with some anxiety. So my belief is that coffee can give you anxiety.
Also, I did the same with Smokes. I never smoked much but i felt it would increase my anxiety. So I just stopped and these thing could have something to do with increased anxiety.

#28

Did you have sexual sides Bizzy??

#29

He has posetd elsewhere he did not, only mental.

#30

I have exact samething…No sexual sides and was a avid runner who kept food journal for 7 years…weighed 165 for years now off finasteride for a year weigh 195…Very odd looking fat water retention around wasit…Whole body is swelled looking in appearance even arms bicep area…People asking me if I was lifting or working out caus I look jacked…Nope…so far no help with anything taking dim also and calcium glumate…Also had same pains and anxiety attacks…Gets really bad around 5 or 6 o’clock at night…My body fat I would say has tripled since stopping the pill…nobody can tell me shit…

#31

My first post here, I’m around 5.5 months off prior to taking .25 MG a day of finasteride for 2/3 months. My experience is also pretty similar to you guys. I started to notice while I was still taking finasteride that I had crazy levels of anxiety out of absolutely nowhere - my body would start going into fight or flight. I realised that I had become almost entirely intolerant of caffeine after years of drinking 3 cups a day without so much as a hint of anxiety. I found that not eating frequently enough (I used to intermittent fast) would cause anxiety and I then had my first panic attack in 8 something years following exercise when I hadn’t eaten dinner.

I started having terrible anxiety after drinking alcohol, literal full-blown shaking, panic attacks - not anxious about anything really, just flight or flight and feeling very disassociated. Fast forward to the worst episode of anxiety I’ve had in my life, panic attacks so bad it gave me depersonalization (which I still have, although somewhat lessened 2 months later). I started to realize a pattern to the anxiety and started measuring my blood glucose with a blood glucose monitor. It turns out my blood sugar was in the gutter perpetually and there was correlation with a lot of my physical symptoms (shakiness, faint in particular). No matter what I ate for a week following this particular episode, my blood sugar barely remained in the normal range, every two hours after eating it’d crash again. After a week this seemed to resolve (as confirmed by the glucose monitor) and my blood sugar seemed a lot more stable.

I saw an endocrinologist who has no idea what caused this. Fortunately my blood sugar seemed to be stable some two months on and my digestion seems to have cleared up (I had diarrhea almost every day for nearly two months). I’ve noticed I seem fine with gluten but dairy seems to give me stomach ache - that’s the only thing I’ve been able to deduce.

So I have been having a cup of coffee in the morning but a second cup of coffee seems to give me a panic attack. I will try and cut it out entirely just don’t want to crash from caffeine withdraw at the moment.

Generally speaking I do feel like my anxiety symptoms are getting better and so is my dissociation (I’m stating to feel more present). But I am still easily triggered by any kind of work stress (which I am doing my best to reduce). I still do get this occasional chemical like depression feeling but it seems shorter lived. I do feel generally quite depressed, which again is something I’ve ever never experienced, but I realise half the battle is in your own life outlook. Personally I’ve found the depression to be nowhere near as dark when you realise you still have a life to live, people who love you and care about you - thinking you’ll be like this forever is depression-inducing for sure and getting myself out of that mindset has already made me a feel a lot better. My worst symptom is the depersonalization but I cannot say that was caused directly by the finasteride, more from the heightened anxiety. I had a depersonalization episode 10 years ago after smoking weed, so not my first rodeo with this.

I am still getting blood tests done, I currently have low normal bioavailable T (normal high total T), high estrogen, high LH. Yes absolutely this could be causing depression but to play devils advocate, I also had low/normal free T last year and felt absolutely fine.

I sort of feel I’m at a point where I perhaps I just accept that the anxiety and depression will likely continue to get better with time and it’s unlikely there’s a silver bullet to this. Acceptance feels a lot better than hanging on the results of a blood test. I am on a plane to California for a work trip, which even a few weeks ago would’ve terrified me. Hopefully anxiety on this trip will be manageable

If I had any takeaways I’d say that I have found so much comfort in my family (I am single & live alone), but I call my mum everyday for a catch-up chat and I am so grateful for it. Connection with people seems incredibly important and helps pull you out of the dark pit. I would do anything for my family and I hold onto them as reason to get better. I know also, that if this all does become too much to manage I can also go back home and live with them. A hard part with this illness is feeling disabled and sad when you’re not able to continue life as you once very much enjoyed. But there’s no shame in taking a break from the demands of your life should you need to. You’re not alone.

Stay strong my brothers, I wish you all the absolute best.