My cortisol saliva test also marked below the range cortisol during the entire day…really mind blowing
Have you tried B12 injections? It seems to be the only effective route of administration that is properly absorbed.
I haven’t tried it. Have you?
I also heard that it’s the most surefire way of getting enough of the stuff. But my recent blood tests shows that my B12 levels are really high…
… so I’m suspecting that the problem is improper utilization/conversation, not deficiency. (Which is why I’m supplementing with 5-MTHF and SAMe).
I’m getting close to my four year propecia anniversary! It goes without saying – Propecia is the worst thing that has ever happened to me. But there are many awful things that can happen to people. Sometimes I take solace in just being alive and being able to see how the world unfolds, even if I can’t take a very active part in it.
I thought I’d give you guys a breakdown of my experience so far:
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[Size=4]Symptoms[/size]
TL;DR
I have gotten better. (However, my starting point was rock bottom, and anything is better than that.) It sounds like I’m doing better than many here – I have a well-paying job that I do reasonably well. I can have sex. I can go out and have some semblance of a good time. But after four years, many serious problems remain, and good remedies are hard to find.
Memory problems
I forget a lot of things. Names of close friends are particularly painful. I also have trouble with recent events (what I did this weekend), anecdotes, facts, places… The most troubling aspect of this is that I get slow in conversations with people. What people say to me doesn’t set off “associative patterns”. One thought does not lead to the next.
Lack of creativity
The world has become a more concrete, less interesting, and less rich. I have a harder time being inspired or wanting to express myself in any way. Ideas are slow to form.
Emotional “flatness”
I’ve buried three close family members while I’ve had PFS. These are people I grew up with and I love very much. Yet at their funerals, I felt nothing. It’s hard to express how sad that actually is.
This “inability to feel” makes it hard to relate to others, and to engage life as you normally would. If I could choose to make one of my side effects go away, it would be this one.
Low libido
Desire for sex can vary widely, but for me it’s gotten steadily worse over time. I haven’t learned much about how to manipulate it, except for one experience I had with a liquid “Soylent” diet (see ‘diets’ section). The great irony is that my erections are pretty good, and I have really good stamina. This is all probably due to the fact that I have normal/high DHT levels (tested multiple times), and low bioavailable T. In the penis, it’s DHT-dependent tissues that deal with erections, and the testosterone-dependent tissues that are responsible for sensitivity and the mental pleasures of sex. So my tests line up well with my symptoms.
Low penile sensitivity
It’s easy to get carried away worrying about sexual issues when you have PFS. Sure, they can be devastating, and socially crippling, but if I had the choice between mental and sexual side effects, I’d choose the sexual. Low sensitivity is one of those things I’ve had for all four years, and while it’s hardly changed at all, it actually doesn’t impact me as much as many other side effects. It’s easy to notice, though, which is why I think it gets a lot of attention on this forum.
Throat tightness
This is the fucking worst. Imagine trying to have a conversation with a friend after having shouted for hours, so your voice is hoarse and sore. At the same time, someone is jabbing three fingers as hard as they can into your both sides of your adam’s apple. That’s how I feel for many hours of the day each day. As you can understand, I’ve become a little more quiet over the years. The only (partial) remedy I’ve found so far is T3/T4 (thyroid) supplements, but these have contributed to lowering libido even more. GABA also helps somewhat.
Rapid aging
It’s sad to see your skin turn dry and see your face fall off gradually. I use a skin cream with a UV filter, and also use a night cream to stave off the worst effects of this.
Suicidal thoughts
Did I just say that throat tightness is the worst? Actually, this is the worst. For me, this manifests as an intense anxiety about what I might do to myself, and the feeling that my psyche will go off the rails at any point, and that I might jump in front of a train if I don’t control my impulses. After two weeks, I was able to take the edge off by restarting a regimen of B12 and Naltrexone, which convinced me that these two were helpful for mental side effects. If these effects hadn’t subsided quickly, I would’ve sought psychiatric help.
Low heart rate / feeling cold / dizziness
This is probably due to slow metabolism. T3/T4 supplementation helps, but it didn’t feel like it got to the core of the problem for me. B12 also helps here.
Constipation
I became constipated after using a probiotic product called VSL-3. Two years, later, I haven’t seen it improving much. Digestive enzymes, prune juice, naltrexone, thyroid medication, they all help.
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[Size=4]Remedies[/size]
Lifestyle
The first thing I realized after becoming ill was that I had to take better care of myself. The second thing I realized is how there is very little consensus about what that means. If you’re like me, and had little experience with “healthy living” apart from weekly exercise and the occasional vegetable, many of the diets and lifestyle changes suggested out there seem pretty outlandish. But if you have PFS, you need to implement some serious changes right away. You’re not going to get anywhere unless you start eating more vegetables, cut out sugar, exercise often, and sleep well.
Sleep
Sleep is very important in any recovery regimen. I happen to be one of the lucky ones here who can fall asleep easily. I notice small improvements in my condition when I’ve slept more than 8 hours a night for a few nights in a row. However, I should probably do more experimenting on this front, since I rarely wake up feeling “refreshed”. (This was actually an issue even before PFS).
Diets
Here are a few I’ve tried. Some of these are not diets as much as eating patterns, but I thought it would be helpful to list them all.
– ‘Specific carbohydrate diet’. Made me more constipated. Not much else.
– Raw vegetables only for two weeks. Very interesting effects from this. I got all the symptoms of hyperthyroidism (too much T4/T3). My eyes where huge - it felt as if they were about to pop out of my eyesockets, I was jittery, and had a ton of energy. The effect wore off after a week.
– High protein paleo. Eating tons of red meat (grass-fed), nuts, and eggs every day, along with a customized formula of amino acids. No refined carbohydrate, gluten, or sugar. I did pretty well in this period, stuck with it for a few months.
– No sugar. This is probably the easiest and surest way to improve your health. But even if you eat no sweets or drink any soda, there is sugar added to so many common foods that you get at the grocery store. Check labels carefully. Fruit juices and mixed drinks are particularly dangerous. These days I don’t eliminate sugar completely, but stay away from it whenever possible (and socially appropriate).
– Gluten free. (This is what I’m currently doing). This diet is mostly helpful in that it steers me towards vegetables and foods with less sugar added.
– ”Regular” paleo. The same as above. I believe its benefits mostly come from the fact that you eat fewer processed foods with less added crap and less sugar.
– Fasting. I’ve water fasted intermittently for 2-3 day intervals, but haven’t found much benefit. I become lethargic, and more constipated. To do a longer fast I’d probably have to take time off work, which I haven’t felt like doing yet.
– Only bone broth soup. Same as above, with slightly less lethargy and constipation. This actually helped me get my appetite back.
– ”Liquid” diet / fake Soylent. I tried to mix my own “Soylent”, a liquid food replacement that attempts to cover everything the body needs. I might have done my mix wrong, or gotten the wrong ingredients, but this was an unmitigated disaster – after four days on the diet I lost the ability to have erections, and libido was completely eradicated, tumbling down from an already severely reduced level. After a year, I still haven’t gotten back to the (already bad) place I was.
Exercise
Exercise is the only activity that gives me some sense of control over this condition. In the first few months of PFS, I had to go running before important meetings to make sure that I would be able to think more or less straight. It’s gotten a little better since then, but regular exercise is still essential. I try to work out every day (ends up being about 4-5 times a week). I alternate between cardio (running) and weightlifting in a gym. I usually do it before work – if I wait to the evening, I’d never be able to go. I’ve been complaining on this forum how hard it is to build muscle, but I feel like this has a lot to do with your ability to push yourself. Even though you feel weak and that you’re not improving, try increasing your weight load gradually.
Naltrexone
I found this helpful for digestion and general well-being. It’s not a miracle drug by any means, though, and I stopped taking it after a while. (Dealing with compounding pharmacies and doctor’s staff to renew my prescription once a month was too much of burden and a cost). But I had no side effects, and it’s pretty cheap.
Methylation protocol
Thanks to the user ‘droit’ for turning me on to this. I did a test on GeneticGenie with my 23&me data, and found that I was MTHFR1298C homozygous – meaning that my folate metabolism is not functioning optimally. If you haven’t read up on methylation yet, you probably should. The first week I started B12 supplementation I felt much better, and woke up refreshed. I really thought I had a breakthrough when I began taking 5mg doses of 6-S-methylfolate a few weeks later, but the pleasant effects wore off. These days I take a product called Methyl Guard along with a B multivitamin, adenosyl-B12, and methyl-B12.
B12
(Mentioned in the ‘methylation protocol’). I can’t do without it. It helps with brainfog, and mental issues in general. I take sublingual lozenges, and these days I also use an injectable version. Sitting in my apartment with my pants off injecting a dark red liquid into my thigh is an uncomfortable and degrading thing, but I’d just add that to the list of PFS-related bullshit I have to do just to be able to go to work every day.
Custom amino acids from Metabolic Maintenance
I have a custom formulation of amino acids that was made specifically for me based on a urine test I did. I’m taking too many things at once to know how this works by itself, but since I’m pretty confident I have some kind of digestive issue, it seems prudent to give the body its basic building blocks. My formula contains arginine, which increases growth hormone levels.
Nitric balance (K62) from Apex Energetics
This product contains many compounds that have shown promise in combating neurodegenerative disease and brain damage. I found it to be helpful, but again, no miracle cure. You need a doctor to order this for you.
Danazol
Seems like a great idea in theory, but ended up being a bad experience. It’s supposed to reduce SHBG (and in the process increase androgens) in lower doses (I used 50mg). After a two days, my testicles started to hurt, and I became incredibly dizzy and brainfogged. Perhaps I should’ve stuck it out, but I was in the middle of a big project at work, and didn’t take the risk. I haven’t gotten back to it since.
GABA
Gives me slight relief from throat tightness.
Digestive enzymes
I use a type of digestive enzymes from Pioneer. They’ve been very helpful for constipation. I use them every day, and will continue.
Alinia
An anti-protozoal medication. I used it after a taking a stool test for parasites. As far as I could tell, this did nothing. And it was very expensive.
Tinidazole
Same as Alinia, but “harder”. Usually causes more side effects. For me, my urine got a strange smell, but apart from that, nothing happened.
Probiotics
About two years ago, I took a course of probiotics (a brand called VSL-3), and went from having food pass straight through me to being really constipated. I still haven’t recovered from that.
Acacia fiber
When I became constipated, my (naturopathic) doctor recommeded fiber as a way to get my digestion going again. After a few days of using acacia fiber, I started getting really anxious and also developed suicidal ideation for the first time. How on earth could a fiber supplement can cause suicidal thoughts? The whole thing is so weird, and it would have been funny if it wasn’t so completely awful to experience.
DHEA
No noticeable effects, except for slight dizziness.
Rhodiola rosea
Some suggests that it is an MAO inhibitor (antidepressant), but it didn’t do anything in my case.
Armour thyroid (T3/T4 blend)
I started with 75 mcg, but reduced the dose gradually. The effects were strange in the beginning – my mind was racing, yet I feel like I couldn’t think straight. I felt high-strung and unable to relax. But after a while, my body seemed to have gotten used to it, and I had a higher base heart rate, better digestion, and a clearer mind. The downside was that it seemed to suppress my endogenous production, and it caused a steady drop in libido.
Synthroid (T4)
I switched from Armour Thyroid to Synthroid on a recommendation from an endocrinologist. Synthroid seemed to give me a steadier, longer lasting effect, but libido continue to drop, and blood tests showed a steep decline TSH (thyroid stimulating hormone, T3, and T4). Faced with the alternative of increasing the dose on a regular basis, I decided to quit cold turkey. After my body “re-adjusted”, things have been going pretty well. My resting heart rate is often in the low 60s (used to be in the high 40s), and I feel less cold and dizzy.
Goldenseal
Herbal medication that’s allegedly helpful against intestinal pathogens and is also anti-inflammatory. From what I could tell, it just made my sexual symptoms worse.
Monolaurin
Also meant to fight off intestinal pathogens. I used it for a few weeks, but ultimately Monolaurin did nothing for me.
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[Size=4]Hormones[/size]
Over the last two years, my blood tests have been pretty consistent:
– Normal (but on the lower side) total testosterone
– Low free testosterone
– Normal DHT
– Normal Estradiol
– High SHBG
– Normal cortisol
– Normal thyroid tests (except when I was taking thyroid medications)
– Borderline low blood glucose
– Intestinal yeast
– Blastocystis hominis
I’ve taken a myriad of other tests, but nothing has yielded any consistent patterns.
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[Size=4]What’s next?[/size]
There’s always something to try. Or something to try again. Next on my plate is a course of human growth hormone (HGH). It’s expensive, but I think it’s worthwhile to give it a try. I can also do more experiments on the diet front. Juicing is an option. So is another course of eating just raw vegetables. I could also do longer term water fasting.
2 Likes
Hi, any update on your condition? Did HGH help?
Cheers
Hi motionx,
Not much has changed to be honest. HGH seemed to give me a small boost – I felt a little better, but also had some unpredictable side effects. I’m completely open to the possibility that this could’ve been a nocebo thing, but I began feeling that certain bones in my ribcage were changing as I was taking it. So I stopped. It didn’t seem worth it to keep taking a drug with potential harmful effects that is incredibly expensive and also don’t yield much.
I’ve experimented with high fat foods and weight training exclusively (no cardio), combined with intermittent fasting. Seems to help with digestion, and I’ve been able to build some muscle.
Recent blood test:
SHBG 115 (17-66)
Free testosterone 5 (4.8-25)
Total testosterone 606 (292-1052)
DHT 1150 (122-955)
t4 lowering your libido? its interesting, my tsh was 4 before t4 meds… ifeel good stamina and libido on it now 25mcgs…
what is your dose:? high doses can kill your libido due to lowering cortisol
my b12 is deep down btw
Lol the long list of medications is hilarious, especialy because you havent improved. Just goes to show you that there are no real remedies and those that recover recover because of time passed and luck.
Hopefully you will improve over time, although your case seems to be quite severe and hopeless, as nothing has changed after more than 4 years.
As natural recovery seems unlikey for you, I guess your only bet is the foundation and the studies.
Good luck.
1 Like
I can totally relate to the list of struggles. It’s been 5 years for me and I’m finally in a VERY good recovery at this point after 9 sets of labs, much trial and error and a continued tenacity to make changes, do research and modify my plan over time.
I’m still on TRT, Vitamins, Supplements, Meds, Clean diet and lifting weights 5 to 6 days a week. So the only way I can claim a full recovery is if I can transition off TRT via PCT cycling and still obtain good lab results. Anyhow, my labs are ALL good now and I feel freaking awesome for the first time in many years.
Thought it might help to share my database of Meds, Vitamins, Supplements on here. I’ve found many items to help with the neurological sides; brain fog, speech trouble, vision, clear thinking, sleep and motivation.
See attached file. Please note that I do NOT believe anyone with PFS needs ALL these to recover, it’s just my comprehensive list which I’ve tweaked and updated over the years with notes, dosage and inventory status. Anyhow, I’m sure it will be helpful.
The file includes:
Nootropics (brain health)
Tboosters
Skin Care
Sleep remedies
Meds/TRT
Antioxidants
Fitness supps
Inflammation reduction
Vitamins-Supps-Meds.pdf (323 KB)
towm8er, ignore what I asked in the other thread. thank you for posting this, it looks very helpful.
I am wondering how are you doing nowadays?
Your very high DHT means there’s something wrong with the next product, have your checked for 3adiol and 3adiolG?
I also think you could have a thyroid issue, have you checked T3/RT3 ratio?
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
- I’m losing a steady amount of hair. A little slower than before fin, but it’s been progressing at a reasonable pace since 2010.
– I’m taking vit. D supplements on a daily basis. (http://www.amazon.com/dp/B0012XWATS/ref=sr_ph?ie=UTF8&qid=1430433300&sr=1&keywords=d+vitamin+thorne)
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!