In it for the long haul?

oh…funny…i told you this before I was theorizing on the UGT enzymes, before I read the study on mitotane!!!

2 guys in the italian study had very high 3adiol i think…

I saw all your blood tests (i had seen them before).

I want to ask you:

  • are you loosing more hair than before?
  • what did you do (sun ??) or take, in the period which brought your vitamin D up?
  • I would like to ask if you could test your bilirubin and reply to me?

Thanks man, really what I suspected! I still have to confirm more data this week but I think everyone who has had low vitamin D will have low 3adiolG and high DHT…Im assuming that will come with high bilirubin as well cheers bro

@xptriado

From over a year ago:
Bilirubin, Total 0.7 mg/dL (0.0 − 1.2)

Good you found the RT3 test results. I’m waiting for some more test results from Baylor college. They’re taking longer to process some of the rarer metabolites that people rarely test for. Very curious about those.

How would you rate your quality of life, Merrychristmas, 0-10, 10 being pre-fin. I have very similar side effects as you, and a very similar story, although I am at the early stages. Your thread gives me a bit of hope but also a bit of the opposite, seeing you’re almost 5 years off the drug still with emotional blunting.

Best,
Brian

Hi there,
That would really depend on where you put the zero. Right after getting sick, I was so low… Almost vegetative. Didn’t have the motivation to even leave my house to go to the grocery store… Slept 14 hours a day… Or in some periods, didn’t sleep at all. I was a mess for a good two months. From that, I’ve gotten to about 5 or 6. 7 on good days. Improvements have been very slow, but noticeable.

Good to hear. Did you have debilitating brain fog? I saw that kind of cleared up for you. Would you say that’s entirely true now? How have your blood tests looked over the years?

I had awful, debilitating brain fog. It was so bad I had to go running before meeting with people to get enough blood flow in my brain to form complete sentences. I felt like I had been lobotomized.

It is much better now, but it took me fucking five years to get here.

A record of my tests:
http://propeciahelp.com/forum/viewtopic.php?f=4&t=4933

The most noticeable trend is that SHBG has steadily increased, and free T has gone down.

Good to hear it got better for you. I’m sorry it took so long, but at least you’ve seen improvements!

I received some shitty news last week – I received a diagnosis for testicular cancer, and had to undergo an orchiectomy (having my testicle removed). There’s no reason to suspect it’s connected to PFS – the cancer seems to run in my family. But it does add an additional pile of bullshit to my life when I’m already doing what I can to manage PFS.

Before the surgery, I did a hormone test to get a baseline for the androgen production that’s going on. The results are really encouraging.

Testosterone 920 (348-1197 ng/dl)
Free testosterone 17.2 (8.7-25.1 pg/ml)
DHT 86 (30-85 ng/dl) – HIGH
SHBG 60.3 (16.5-55.9 nmol/L) - HIGH

For the first time, my free T is normal!

I’m really sorry to hear about that, bro. Are you going on trt now? What symptoms did you have?

Really hope you come out of this well. I have a friend who never took fin or anything who had testicular cancer, got one removed and fathered a healthy little boy once his treatment ended. Just thought that sharing this could help. If you have any questions to him I’ll be pleased to help.

Be well

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@AntonioBR – That’s incredibly encouraging. Thanks a lot for sharing!

No, I’m not on TRT. Symptoms are anhedonia/depression/no libido/no motivation, limited penile sensitivity, throat tightness, dry skin, memory/cognitive issues, constipation/digestion, tinnitus (this is new), brain fog, among others.

Hey merrychristmas.What has happened since you lost the testicle. Has it affected your hormones? Are your symptoms worse? Many guys struggle with on testicle and need TRT. I would say most do. Please let me know.

Thanks

Hi MerryChristmas,
Just wanted to say thanks for updating this thread through the years, and I hope you are doing well since the testicular cancer!

Like you I have been surprised how diet seems related to sexual side effects though I haven’t made as much progress in figuring out what works for me. Your posts are going to be a template for me now that my digestion situation has gotten tougher so, thanks again and I hope you have had a speedy recovery from cancer (and someday PFS!)

Graywire

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Hey, thank you for that Graywire!

What I’ve seen with diet is that you can always take it one step further. You can always be more restrictive, more disciplined, get higher quality ingredients, etc. The trouble is that it’s very disruptive for your social life, which in turn can be bad for your overall mood, especially if depression is an issue. But we have to keep trying, I guess.

I’ve been testing positive for blastocystis hominis (a parasite) a few times the last couple years, and this year I decided I’d try to get rid of it, after reading some anecdotes about spontaneous recoveries after clearing parasites.

So – I embarked on two courses of antiprotozoal/antibiotic medication (the first one wasn’t effective) – (alinia, septra, tinidazole, paromomycin), and two weeks ago the blastocystis test came back negative. So that’s good news. What’s less good is that it seems to have made no difference on PFS.

Also bad news is that paromomycin worsened my tinnitus (a fairly common side effect).

PFS could be caused by hidden problems you had prior to taking fin, in his case it was parasites and two days of antibiotics cured him of PFS. We might also have parasites but our hidden problems which came back to bite us when we crashed on fin were obviously different

Hi @vincentv - i haven’t seen or felt any change in testosterone levels. I wouldn’t be opposed to doing a short trial, but I don’t think it’s likely to do anything.

My 8 year PFS-anniversary passed a few months ago, and enough as changed that I thought it would be worth giving an update on what’s going on with me.

8 years… With PFS-impaired memory, I don’t think I fully grasp how much time that actually is. I have no nostalgia or a feeling that events happen a long time ago. As I’m sure many are familiar with, I’m living in a kind of dull present moment, with limited grasp of either past or future. Since I can’t feel time through subjective experience, I rely more on observing changes in the world around me. Friends who have gotten married (some twice), family members who have been born and died, political changes… and it’s only by reflecting on these events that I can understand that… well, 8 years is a fucking long time.

Has anything changed for me? Yes, although not as much as I’d like. In the last year, I’ve made some personal changes, tried some dietary interventions, and some new drugs.

I’ve already mentioned that since 2010, the biggest improvements have been mental (cognition, less brain fog) and physical (energy, better physical condition due to exercise), better and more frequent erections, less “throat tightness” and partial restoration of brain/penis connection. Some thing are the same or worse, like libido (non-existent), penile sensation (no improvement), and anhedonia. (There are also many other symptoms, but those are the main ones).

I made the painful decision to leave my girlfriend last year – I just felt like I wasn’t present in the relationship, and just felt overwhelmed with tending to the needs of another person when I had enough of my own issues to deal with. Moving to my own place and having the time and space to organize my daily routines the way I want has helped a little. Mainly, it’s been easier to dedicate more time to meditation, and to healthy eating/exercise.

I also tried some new drugs. I did a round of IV ketamine (mostly for chemotherapy-induced neuropathy), which was fun, but didn’t do anything for PFS (or neuropathy). I also tried a low dose of testosterone cypionate, but that made me feel extremely tired, sleepy, and just plain off, so I didn’t dare to continue.

I took a vicious cocktail of antifungal/antimicrobial medications to get rid of Blastocystis (paramomycin, tindamax, alinia, septra), in order to put to rest my suspicions that I might have some kind of diagnosable stomach problem (I had previously ruled out SIBO and leaky gut with tests).

Around October last year, I really felt like I was on to something when I read about the connection between SHBG and insulin, so I spent the next few months increasing my own insulin production, basically eating a ton to gain weight (which is hard to do in a healthy fashion), doing weight training, and meditating. I also started taking a supplement called Nitric Balance which is great for cognition and overall energy. This combination, though it seems simple, put me in the best shape I’ve been since this all started. I thought I had really found a reproducible strategy that I could keep building on.

However, I became greedy and careless and added maca to my supplement list (already doing methylation supps, BCAA, and l-glutamine), which was an unmitigated disaster. Waves of anxiety washed over me like I haven’t experienced in many years, and I saw my penis shrink and I got the “hard flaccid” state that some have described (I know what you guys are talking about now!). Since maca apparently shrinks the prostate, this might lend credence to the idea that PFS is related to prostate tissue change. It’s been a couple of weeks now, and the maca-damage is still there. I’ll keep doing my bodybuilding routine, and hope that I can regain what maca took away (and go beyond).

When doing the recent PFS survey (awesome initiative, BTW), I returned to a blood test I did right before I started my cancer treatment, and saw something interesting. My T and DHT was much higher than normal, and SHBG had gone down. I think this was because my cancer tumor releases large amounts of HCG. While I don’t remember feeling a lot better during this period (how could anyone awaiting an orchiectomy feel good?) it is possible that I would’ve felt better if I had given it more time. This is why I’m considering HCG as an addition to my regimen.

I’d also be open to trying insulin injections, given how weight gain has been so helpful.

Life is always a struggle, but this struggle has challenged me beyond my wildest expectations. The fight continues!

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What type of methylation supps exactly? I recently had a severely bad experience with some B-vitamins typically used in these “methylation” protocols by CFS patients to regain energy and mitigate depression:

Tried it as a “shot in the dark” treatment, assuming in couldn’t hurt, and really regret it.

btw- thanks for filling out the survey!

I found that I had a homozygous mutation on the MTHFR 1298C gene, so I did a specific protocol that involved starting with potassium by itself, and gradually introducing other supplements. Apparently there are many pitfalls, but I’ve only seen benefits from it. I’ve gradually cut out things over the years (like sam-e), and found that I do fine with methylcobalamin, 6S-5-MTHF (1mg), and Thorne’s ‘Methyl Guard’ supplement. If I go without it for 4-6 weeks, the brain fog usually comes creeping back.

It’s so interesting that almost every remedy has some examples of very positive and very negative outcomes. Aromatase inhibitors, progesterone, probiotics, milk thistle… they affect people in wildly different ways. I thought methylation was one of those harmless ones, but apparently not! There’s a horror story about almost every possible supplement or drug on here. Be careful, folks!

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It’s been a while since I’ve updated my thread here, but the time felt right to share some things I’ve learned over the last year. Perhaps someone will find it valuable.

I’ll try to keep the theatrics to a minimum and keep this short – the beginning of the year started strong. I had a really good exercise routine (weightlifting and yoga) and had upped my carbohydrate intake (by a lot) and was gaining muscle slowly, but surely. I was trying to use a high carb diet to decrease insulin sensitivity (kind of the opposite of what you normally want to do) in an attempt to lower SHBG, which is correlated how the body responds to insulin. This seemed to work well – I was feeling better, and also saw that SHBG had dropped massively and a corresponding increase in free T. The problem was, estrogen had also increased dramatically, which manifested as tender nipples and an upper lip swelling (haven’t been able to confirm that swollen upper lip this is a symptom of high E, but it’s been mentioned on this forum).

The big setback came in March, when I started using maca root. After three days’ use, I suddenly got panic attacks like I hadn’t experienced in many years, and to my horror, I saw that my penis had taken on an hourglass shape, with even more prominent veins than before. There was also a bit of shrinkage and excess skin. Constipation worsened. My face changed within 2 weeks – larger pores, wrinkles, dark circles under my eyes, new folds appearing, the whole package. This was immediately followed by a nasty sinus infection that I just managed to get under control, 6 months later. The infection kept me away from the gym, which was really hard for me, since it was the main thing I felt had made me feel better.

In short, the hard years keep on coming. It will be 9 years of PFS for me in November.

Some learnings from this ordeal –

  • T, DHT, and E levels only seem only mildly correlated with my symptoms
    • In 2015, I had an HCG-releasing tumor that spiked my T and DHT, but it didn’t cause any significant change in how I felt.
    • When I got the high E, I felt the symptoms I mentioned, but those were not big problems compared to the other things I’m dealing with…
  • … but prostate size and/or prostate tissue DOES seem to affect symptoms
    • Maca root is apparently fairly good at shrinking the prostate (at least in mice). In this paper, finasteride was used as a control – https://www.ncbi.nlm.nih.gov/pubmed/28635053 . Probably a good idea to stay away from anything that’s mentioned in the same sentendce as finasteride. Wish I had done my research on this.
    • The paper that Axolotl found the other day also points to an interesting prostate-shrinking mechanism for serotonin, which could explain the symptoms of people with PSSD – Serotonin regulates prostate growth through androgen receptor modulation
    • So how do you increase prostate size? Testosterone is one answer, but that’s all I’ve found so far. Googling for “increase prostate size” is almost impossible because it seems like everyone else on earth is trying to reduce their prostate size, so every article is about things you can do to get a smaller prostate.
  • SHBG might be a red herring
    • If you have high SHBG, it might just be a sign that you’re a fit person who is unlikely to get diabetes. Low SHBG is actually a diagnostic marker for diabetes. So instead of chasing remedies or drugs that purport to lower SHBG, I’d rather try increasing T in the ‘normal ways’ – with a bodybuilder’s diet and weightlifting.
  • 5 months of NOFAP ‘hard mode’ did nothing for me

What am I doing next?

Now that I can exercise again, I’m going back to lifting weights. I’ll also be adding more protein and fat to my diet, and keep the carbs on a more moderate level. I’ll also do some trials of digestive enzymes, since my latest stool test showed very poor breakdown or absorption (or both) of both proteins and fats. I’ll try bromelain, which apparently can be beneficial for sinuses and inflammation in general.