Let's beat this bitch - no hope's story

Member Stories
#21

Thanks so much Sugar. You guys are the best. There’s been so much progress in the last 9 years, seems like we’re finally being taken a bit more seriously by the medical establishment. Which is promising. It’s even listed as a syndrome on my country’s medical safety register! It definitely wasn’t back in 2013.

I doubt much will come out of the appt, just hoping to be taken seriously so i can get some bloods. Which won’t say much, even if i get a full panel, just feel like i can’t sit back and watch my life deteriorate in front of me.

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#22

hey all, thought i’d give an update. it’s going to be a long one.

my visit to the doc went ok. he was more understanding than after my first crash, but was clearly stumped. even suggested i go back on fin! told him fuck no obviously :joy:. he prescribed cialis which i’ve been taking a few times a week, and ordered me a pretty thorough blood panel which i’ll post below. he didn’t order a hormone panel so i did this myself a month later. i’ll post that below as well.

i’ve had improvements in some symptoms, namely insomnia, anxiety, and digestion. my sexual sides are pretty consistent and haven’t really improved. brain fog is a bit more all over the place. some days i feel like i’m 90% back to my pre-2nd crash baseline, other times zero improvement. i also have numbness in my temples and forehead that seems to get worse when i have a a flare up. i guess this is what others refer to as “head pressure”?

what has gotten substantially worse is my gynecomastia. i got gyno while i was on fin, but it’s been pretty stable since then. i’ve had some sensitivity over the last few weeks but earlier this week it flared up really bad, like a cold burning pain in both nipples and aching in my chest. my current theory is that my test is actually the highest it’s been for a long time (probably because i’ve completely cut out alcohol, work out more and am taking more vit d than usual?) and has been aromatising to estrogen. i tested this by not taking vit d or working out for 2 days and the pain subsided a bunch. anyone have any tips? taking an AI is a last resort but i really don’t want my gyno to be even more prominent than it is, i already look bad enough.

here’s my current protocol:
cialis - this helps with bloodflow but i try not to take it too consistently as 1. it’s expensive as fuck and 2. i don’t want to be too reliant on it. i stick to 5mg, most i’ve taken is 10mg.
vitamin d - i stick to 5k IUs a day or less.
weights - i try and lift most days of the week. mostly dumbbell stuff at home. i’m currently stronger than i was before the 2nd crash. i think because i’m no longer drinking and am working out a little more. probably in the best shape of my life atm, if you ignore the tits.
running - usually run 6km twice a week or so. i want to do more but can’t because i’ve got shin splints.
diet - i’ve pretty much completely cut out alcohol (i’ve had two glasses of wine in the last month, i used to drink 5 days a week). i haven’t had gluten at all in a month. this has definitely helped with digestion. haven’t had diarrhea after eating in a long time. i’ve also cut out refined sugars.
cold showers - i have a cold shower every morning. this may slightly help with cognition but definitely helps with dry skin. my forehead is less flaky and painful since i added these to my regimen.
bathmate - i pump a few times a week but i’m also afraid of fucking up my dick even more. so i try to not overdo it.

here are the bloods ordered by my doc back in february. most notable is low WBC and top of range albumin.

17/02/2022

HbA1c: 28 mmol/mol ( < 41 )
TSH: 0.99 mIU/L ( 0.40 - 3.80 )
Creatinine: 69 umol/L ( 60 - 110 )
eGFR: > 90 mL/min/1.73m2
Total Bilirubin: 16 umol/L ( 2 - 20 )
Alk. Phosphatase: 46 U/L ( 20 - 110 )
GGT: 15 U/L ( 10 - 50 )
ALT: 18 U/L ( 5 - 40 )
Total Protein: 76 g/L ( 65 - 80 )
Albumin: 48 g/L ( 34 - 48 )
Globulin: 28 g/L ( 25 - 41 )
Calcium: 2.48 mmol/L ( 2.15 - 2.55 )
Phosphate: 0.97 mmol/L ( 0.80 - 1.50 )
Adjusted Calcium: 2.38 mmol/L ( 2.15 - 2.55 )
CRP: <3 mg/L ( < 6 )
Haemoglobin: 156 g/L ( 130 - 175 )
RBC: 4.85 x 10e12/L ( 4.30 - 6.00 )
Hct: 0.44 ( 0.40 - 0.52 )
MCV: 91 fL ( 80 - 99 )
MCH: 32 pg ( 27 - 33 )
Platelets: 231 x 10e9/L ( 150 - 400 )
WBC: 3.9 x 10e9/L ( 4.0 - 11.0 ) L
Neutrophils: 2.4 x 10e9/L ( 1.9 - 7.5 )
Lymphocytes: 1.0 x 10e9/L ( 1.0 - 4.0 )
Monocytes: 0.4 x 10e9/L ( 0.2 - 1.0 )
Eosinophils: 0.1 x 10e9/L ( < 0.6 )
Basophils: 0.0 x 10e9/L ( < 0.3 )
Nucleated RBCs: 0.00 x 10e9/L
Cholesterol: 5.6 mmol/L
Triglyceride: 0.7 mmol/L
HDL Cholesterol: 1.85 mmol/L
LDL cholesterol: 3.5 mmol/L
Chol/HDL Ratio: 3.0

here’s the hormone panel i ordered myself. would’ve loved to get DHT but it was more expensive than all of the below combined so couldn’t justify it.

17/03/2022

DHEA-S: 9.0 umol/L (2.4 - 11.6)
Serum B12: 327 pmol/L (170 - 800)
Serum Folate: 14.9 nmol/L (9.0 - 45.0)
FSH: 1.3 U/L (1.0 - 12.0)
LH: U/L 5.4 (1.0 - 10.0)
Progesterone: < 1 nmol/L (< 3)
17B Oestradiol: < 60 pmol/L (< 136)
Prolactin: 206 mU/L (90 - 400)
Testosterone: 15.9 nmol/L (9.0 - 25.0)
SHBG: 50.2 nmol/L (14.5 - 48.4)
Free Testosterone 250 pmol/L (204 - 637)
% Free Testosterone 1.57 (1.59 - 2.95)
Free T4: 16.3 pmol/L (12.0 - 22.0)
Free T3: 5.0 pmol/L (4.0 - 6.8)
TSH: 1.2 mIU/L (0.40 - 3.80)
Vitamin D: 82 nmol/L (50 - 150)

questions:

  1. my panel looks pretty consistent with others here. anyone have any tips? i obviously need to bring shbg down which should boost free-t?
  2. not sure how to interpret estradiol and progesterone? i think they’re both in range as they’re less than the reference ranges? worth noting this is the only estrogen marker i could order through this company
  3. any tips for the gyno? hesitant to take an AI but am toying with the idea of a natural one eg: DIM or Boron? i know others have crashed on these but i need to do something
  4. has anyone had gyno surgery? i’m considering it, but would need to get the pain under control first. also worried about 1. cognitive issues from the anesthesia and 2. slow wound healing.

thanks!

ps: my GF had a positive pregnancy test this month. so at least i know i’m somewhat fertile? we’d been trying for 6 months or so and it finally happened in the month after i crashed for the 2nd time. weird! maybe cutting out alcohol helped? little bit worried about the kid being fucked from PFS but as far as I know most people here have had kids fine right? let me know!

#23

Hi @no_hope

Thanks for the update. I note you haven’t been around for a while. While you were away we’ve made some updates to the rules around how members can report improvements due to substances/lifestyle changes.

Moving forward, please use the self-reporting form as per the instructions in this post: Changes to propeciahelp towards a more effective patient advocacy: Please read this important post about changes to our terms of service

Thanks.

#24

No_hope,

After all that time, if the worst moment after discontinuation was 0
where are you now in physical sides, mental sides and sexual sides?

You could have a normal life in some way?

#25

While your SHBG does indeed seem a little high for your tT it seems others with similar values haven’t gain much by suppressing it.

They both looks fine to me. You definitely don’t have high E2, since neither your value or prolactin is high (prolactin can serve as a proxy for E2). Also progesterone in men isn’t really that well understood so there is no minimum refence value.

My best tip is to get surgery by a experienced surgeon. Nothing else will ever get your gyno to disappear (although it could shrink). But the risks with AI is way to high to not even get a permanent result, in my opinion.

I haven’t had on yet, but I plan to in the future. I think there will not be an issue since it’s quite a mild surgery. Others have had it with PFS, the biggest “risk” seems to be the anestethia so to minimize risks I’m going to opt for general rather than general. This will also make it cheaper.

Did you by any chance catch covid? My white blood cells were about the same level as yours after I had covid and it’s been increasing to normal range very slowly since.

I think your child will be fine, there is some evidence that “epigenetics” can be inherited but it’s much more likely the mother will impact the child than the father. Also there is millions of variables that affect a growing child, even if something would end up wrong the chances are slim it would be due to fin, and it’s also unlikely damage would be seen before old age. I wouldn’t think much about it if I were you because thinking about it won’t change the outcome and will only make you suffer.

I’ll hold my thumbs everything will go smooth for you and your gf.

#26

this is hard to say because i’ve had two crashes now, with the second one dropping my post-fin baseline considerably.

if my 2nd crash in february put me down to a 0 and pre-finasteride was a 100 then i’m probably at 15% overall currently? just before my 2nd crash i would’ve put myself at maybe 65% or so?

though that sounds lowish i lived a relatively normal life. worked as normal, went out a few times a week, had hobbies etc. i barely thought about pfs even though i was still very much affected by it. tbh i think this is what happens to most users of this forum, they stop visiting because they acclimatise.

#27

so the bloods are fine essentially? i’m thinking of booking a follow up with my GP with the intention of getting a referral to an endo. even though i’m aware it’ll likely be fruitless.

regarding the gyno, i agree with all your points, though isn’t it odd i’m having flare ups despite prolactin and e2 being in range? what else could be causing it?

the primary reason behind taking an AI wouldn’t be to shrink the gyno but rather to get it under control so it doesn’t get any worse. then i’d look at surgery as an option. looking at surgery now without treating the underlying cause seems pointless as it’d just grow back.

thanks for your comments around the kid! i’m staying confident it’ll be fine given i don’t think i’ve heard of a PFSer having a child with serious sexual issues. though i could be wrong?

will post another update when i have more to share.

#28

Pretty much, although it’s very hard to read PFS bloodwork as it seems our values doesn’t always correlate to how we feel / healthy peoples so to speak.

Yes it’s quite odd indeed, but odd and PFS go hand in hand sadly. Maybe there was an upregulation of estrogen receptor alpha in your breast tissue (one rat study showed that was the case in the brain after withdrawal of fin). It could also be due to loss of AR signaling, or local changes in enzymatic activity of aromatse and/or 5AR. Although this is just speculation, they’re all possible and wouldn’t be picked up on a blood test.

This is only true if you go to a inexperienced surgeon. The standard procedure is to leave a little bit of the gland, or else the nipple will “collapse”. But there are some specialists who are able to remove 100% of the gland and use special techniques to prevent the nipple collapse. These surgeons are very popular by bodybuilders as it’s impossible for the gyno to ever grow back. I think if you search “internal flap gyno” on YouTube one variation will be explained.

I’m sure it will work out just fine. There’s plenty of people on here who’ve had kids and there’s even people who had kids while still on fin and I haven’t really read about any complications.

#29

thanks for that Cbrandel. good to know surgery is always an option! interestingly my gyno has calmed down considerably in the last week or so. in retrospect the flare up coincided with these frooze balls i was eating that had raw cacao in them… could’ve been anything though? who knows.

at the moment my primary concern is dick pain and what it signifies. i had this occasionally after my first crash in a milder form but it’d usually occur after a week or so without ejaculation (and probably erections). would go away after sex.

currently it isn’t going away at all. shooting pains up the sides of my dick, burning over most of it and a dull ache, particularly on the left side. i’ve also noticed the curve may be getting worse? it’s now noticeable when flaccid. i didn’t really pay too much attention to it before the 2nd crash so it’s possible it was like this then, but it definitely seems to be worsening? looks similar to how it used to when erect, twisted at the base, upward curve caused by a flat fibrotic patch near the base on the right hand side. multiple half rings on the right hand side, long thread on the left hand side coming from the base. long thread down the middle at the top.

i have no idea why this has gotten worse in the last 2 weeks or so. either:

  1. i have less DHT since my 2nd crash, so developing more fibrosis
  2. i damaged it somehow during sex without realising?
  3. some kind of combination of the above. damage due to sex and no DHT to assist with healing

i’m also finding it harder to get erections even with cialis. which is either because i’m getting more fibrotic or developing a tolerance. took 10mg last night before bed and didn’t have 1 NTE.

anyway, i had an appointment with my GP where I showed him my blood panel (posted upthread) and mentioned that my symptoms hadn’t subsided. he tried to be tactful but basically shot me down and said it was all in my head because i was focussing on it and it’d go away when i accept it? pretty unbelievable. i have below range free test % and above range SHBG with symptoms pointing to both being an issue and get completely dismissed? how? i just want a referral to an endo or urologist! i’ve looked into it here and i can’t get to either without a referral.

sorry for the doom and gloom all. i really want to be a positive here but it’s hard. i noticed this thread has a ridiculous amount of views, possibly because of the title which can be read as very optimistic. sorry i’m not living up to it. i’m still trying to be positive but i’m not really sure where to turn to now other than letting my dick get more fucked up until i can get an implant.

#30

wish i wasn’t posting in here so soon after my last post, but thought i should give an update.

this is fucking insane, and tbh if i didn’t have PFS and read this it’d confirm the assumption that all PFSers are just mentally unwell hypochondriacs. that’s why i kind of hate posting on here, it fuels their disbelief. but i have to to keep an honest log. i still can’t believe this happened.

i bought some taurine after reading that it can help improve fibrosis when taken with cialis. i did a bunch of research and saw that up to 3g a day should be fine, and the vast majority of the reports on the forum were positive. apart from @hippydoof’s, which i believe he originally erroneously reported as a crash related to baking soda and apple cider vinegar.

on friday night i sat in my bed with a 1g pill beside me contemplating whether i should take it. i figured 1g is the same amount that’s often in energy drinks, and surely an energy drink wouldn’t crash me?

so, i took it. an hour later before going to bed i went to the toilet and noticed my dick was looking much healthier. then i went to bed. that night each time i woke up i had an NTE, for reference the few nights prior i had had 0, even after taking 10mg of cialis.

next day my dick was looking a bit healthier, and hadn’t gotten any more numb. dick pain had reduced substantially. however, i had a bunch of crash symptoms. brain fog increased, lower back pain increased, had a bunch of muscle twitches when lying in bed, pretty severe hypnic jerks (has this been discussed on this forum? i haven’t really seen it), more full body tingling sensations, numb sensation in the forehead and temples etc. these all flared up throughout the day and so i was obsessively checking my dick to make sure it hadn’t gotten worse.

it was still at baseline before i went to sleep.

of course, i woke up 2 hours later and my dick was number. one of those things that’s sort of hard to tell immediately since it varies so much, but i touched the underside on the left (which i could still somewhat feel after the february crash) and it had no feeling. feels very similar to when it went completely numb after my bike ride last year. also more rubbery. i don’t think i’ve seen this comparison before but it feels kind of like a stress ball?

honestly in complete disbelief over this. a fucking red bull could’ve crashed me? it’s insane. no wonder people think we’re nutters. looking back to the february crash, i now believe it was the glycine i took back in february that crashed me rather than the tribulus since i believe they agonise similar receptors? though of course it’s also possible that the tribulus contributed as well.

i’ve since read that taurine can increase testosterone secretion when taken in low doses (https://pubmed.ncbi.nlm.nih.gov/19921479/). i also read that taurine and glycine upregulate 5arII, which would presumably lead to higher levels of DHT? i’m convinced this caused a similar flood of androgens that occurred when i was tapering off finasteride 9 years ago, though obviously on a much lower scale. i completely believe in the AR insensitivity theory now. either that or i actually have toxic levels of allopreg in my brain, which i find hard to believe given the Melcangi study.

incredibly hesitant to try any other supplements or medication at this stage. i was somewhat keen on trying HCG but no doubt i’d crash on that as well. i think all i can do is try and maintain as much blood flow to my dick as possible with l-arginine, l-citruline and cialis to try and reduce fibrosis. though that may be a losing battle if i am DHT resistant.

I’ll try and remain hopeful that all the research mitch and the network are doing will lead to a viable treatment. i’m not expecting a total cure, but hopefully something that will let me lead a somewhat normal life.

i will be donating to the network.

i’ll update the below form if anything changes in the next 3 weeks.

Self-reporting form

  1. Name of the therapy/substance: Taurine
  • Dosage: 1000mg
  • How often you took it: Once
  1. Status
  • Still using [ ]
  • Stopped with no lasting change to initial symptoms [ ]
  • Stopped with persistent change to symptoms [x]
  1. Duration of use: Days [1] Months [ ] Years [ ]
  2. Response when you started:
  • Greatly improved [ ]
  • Slightly improved [x]
  • Stayed the same [ ]
  • Slightly worsened [ ]
  • Greatly worsened [ ]
  1. Current response (if you’re still using) OR Response in the time before you stopped the treatment
  • Greatly improved [ ]
  • Slightly improved [ ]
  • Stayed the same [ ]
  • Slightly worsened [x]
  • Greatly worsened [ ]
  1. Lasting changes to initial symptoms after cessation (if you have stopped for more than 3 weeks)
  • Greatly improved [ ]
  • Slightly improved [ ]
  • Stayed the same [ ]
  • Slightly worsened [x]
  • Greatly worsened [ ]
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#31

I’m really sorry to hear about your recent experience, but thank you for using the reporting form to share.

It won’t be overnight, but good things are happening. The more people who get involved, the quicker we get there. Thank you for your support.

If you ever want to chat just send me a PM.

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#32

So it’s been a little over 3 weeks since my last update.

Regarding the taurine crash, as of a week or so ago not much had changed. Maybe some very slight improvements? It’s really hard to tell though as my baseline fluctuates so much.

I visited my GFs family over Easter weekend and managed to cope ok. Though I wasn’t able to avoid gluten, sugar or alcohol. This didn’t seem to affect me too much, though after eating pizza for the first time in 6 months or so I got the shits immediately. This postprandial response hadn’t really occurred since I cut gluten out, so gluten clearly needs to be avoided!

I tested positive for Covid last Friday after having cold symptoms earlier that week. I experienced the increase in libido and ease of erections others have talked about though this seems to have reverted back to baseline in the last few days despite still being symptomatic. Interestingly, none of my other PFS symptoms improved, brain fog was the same if not worse. Makes me think there are different root causes at play… libido and EQ being caused by AR upregulation/silencing, brain fog and other neuro symptoms (including numbness) being caused by neurosteroid imbalance/damage?

In terms of virus symptoms, I experienced a sore throat, runny/blocked nose and some minor fatigue. Brain fog in the last few days has flared up badly, I have numbness in my forehead and temples. Identical to my last 2 crashes. Burning in my forehead today as well, feels like inflammation?

I’ve also been a bit weaker than usual, but that may be because I’ve been aggressively avoiding any kind of physical exertion. I’ve essentially spent the last week in bed.

I’m hoping to recover over the next few weeks by avoiding exercise and praying I avoid long Covid. If I pick it up on top of PFS I really don’t know how I’d cope….

I was thinking about this after I made my last post, but has anyone here explored the glutamate excitotoxicity theory? I know we’re not encouraged to pointlessly theorise, but I read somewhere that glycine competes with glutamate for the NMDA receptor, and can release excess glutamate causing excitotoxicity and neuron cell death in certain circumstances? Obviously bringing this up as my big February crash came on after a few days of glycine supplementation…

Also worth noting ibogaine and ketamine in particular are NMDA antagonists, so this could explain why others see improvements after taking them?

Though I’m not sure how coming off finasteride could cause this in the first place? Also doesn’t explain why most people are fine taking these supplements….

Anyway, my plan over the next month or so is to take it easy, keep avoiding gluten and alcohol as much as possible and hope for the best. Then slowly get back to exercise and start a more rigorous natural exercise regime when I’m able to.

Oh also, for reference I went through my bottles and counted out what I took during my recent crashes:

February crash:

  • 4 Glycine pills (4000mg) over 3 days.
  • 6 Tribulus pills (2400mg) over 3 days
  • 1 L-Tyrosine pill (500mg) taken on the morning of the 2nd day

April crash:

  • 1 Taurine pill (1000mg)
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