Thanks for updating us @Aquarius330. Just as a word of caution on sodium butyrate - as you may not be aware - recently another member worsened his situation significantly from its use
Did your doctor recommend sodium butyrate?
1 Like
It was my iniciative but I checked with him before taking it. While he has many question marks about that epigenetic theory and the methodology and selection bias of the main study behind it, he told me side effects from Sodium Butyrate at that dose are very rare and I could try it if I really wanted. Not essential through.
That’s probably true when pertaining to non-PFS patients. However, PFS patients can react differently, as I’m sure you’re keenly aware. I developed severe PFS from 1 mg of finasteride while other men can take 5 mg per day for years and have no appreciable ill effects. Anyway, it is of course up to you if you choose to take it, just thought you should know it’s not without risk.
Apart from that unlucky experience, there are also 2 recoveries on butyrate.
Is there any biological explanation on why should make things worse?
Butyrate is an anti-inflammatory, his doctor is pursuing that going with L-arginine.
So, they are theoretically aligned both supplements.
1 Like
I assumed he was already aware of the positive impressions of it because he added it to his supplement use. On those 2 recoveries, who are you referring to? I recall @MOONCHILD said it helped him but who else?
I’m no expert so this is a question for somebody else, my understanding is that it interacts with the AR.
I leave here this protocol i’m trying which is giving me positive advancements
It also includes butyrate, and is focusing on inflammation too.
The original poster recovered.
I hope we can connect finally all the dots.
Hey man, I suffered greatly from not having a doctor who listens. Would you mind sharing the name of the doctor you are seeing? The one who helped you the most.
Hello again,
as promised I have updated the original post with my most recent blood test which I will comment on below.
SYMPTOMATOLOGY
I have been quite active during the last couple of month and noticed some degree of improvement. Next, I detail the evolution of each of the main symptoms:
Sleep patterns (fatigue in the morning, inability to get up, lack of deep sleep/deep sleep continuity). I have been measuring my deep sleep with a sports band over the last months and I have seen a clear and progressive improvement (average 12% in July, 21% in August, 25% in September). I am almost recovered from this issue but I would like to enhance my deep sleep even more to support healing.
Muscle weakness. I was not even able to do a push-up in July and I could not feel the contraction of my muscles (particularly arms) so working out was extremely difficult over the first weeks. Now, I can say my muscles are responding to exercise again and I am 90% recovered from this. I am convinced this will totally reverse over the following 3 months if I keep exercising regularly.
Low mood (anhedonia). The general mood has improved a lot and I do not feel depressed or miserable anymore. I am convinced this is 90% related to the exercise (particularly running) as I quickly saw improvement after workout sessions. I also feel much less emotionally flat and the number of “emotionally bad days” has steadily reduced. I noticed that minimal changes in my sleeping patterns or daily routine tend to trigger anhedonia episodes, but this is better now as the intensity of these episodes is decreasing. Now, I have a “low day” every 9 days or so, most of my days are normal and I can see those days are more infrequent each month.
Low libido. No improvement. Over these three months, I woke up with ridiculously high libido on a couple of days and it lasted for a few hours. Other than that, my general libido and sexual mood or thoughts are almost not existent and it really concerns me as it really feels unhealthy.
Erectile disfunction (and lack of morning wood and spontaneous erections). I have recovered frequent morning wood but is still relatively weak most of the days. During sexual activity, even with the action of Tadalafil 5mg every other day, erections are functional but not complete (approximately 75% strength). I believe this is only better because of the action of Tadalafil but the baseline remains weak.
Lack of brain-penis connection. The disconnection is not as bad as before and I do not feel the penis like a exogenous part of my body anymore. However, spontaneous erections are still barely not existent and connection feeling is far from normal.
Uncomfortable sensation in the penis (burning, numb). Great improvement on this. Most sensations are now gone and they only come back after sexual activity or the day after I disturb my sleeping patterns.
Lack of concentration. At some point, I was not even able to read a paragraph and fully understand its content unless I read it several times. I have just seen an improvement on the last couple of weeks but I am still quite unfocused and struggle not to lose track when I try to concentrate on a certain activity.
Lack of motivation. I still have difficulties to make decisions, show initiative, and generally, get things done or even started.
Prominent veins in the penis with increased sensitivity on them. The veins are still there and sensitivity has not decreased, but it has been worse in the past so it is bearable.
Penis shrinkage. No changes.
Gynecomastia. Less visible the more I workout but it seems it is here to stay.
Low tolerance to frustration/anxiety. This was happening before quitting Finasteride but it definitely worsens afterwards. I feel way more irritable than before and, when I get into an argument (even if it is something irrelevant) I lose control and get anxious to the point of hitting objects and/or screaming to release tension. After that, it is extremely difficult to get back to a relaxed state of mind until I go to sleep. Over the last month, this has improved but I believe it is improving because I am consciously learning to control it before it happens rather than before I get less anxious.
NEW BLOOD TESTS (END SEPTEMBER 2020)
In the last month, I travelled to Spain for some medical appointments and I had a couple of more complete blood/urine tests, one from an endocrinologist with experience in PFS and another one from the Spanish Health System. General conclusions are the following:
- LH (low before) has recovered to healthy levels.
- Serum testosterone has skyrocketed since the last analysis and it is on supraphysiologic levels.
- SHBG is higher than desirable.
- As a consequence of the previous, free testosterone is below optimal levels.
- Estrogen levels are on the higher range but not concerning due to high androgen levels.
- 5AR activity is normal.
- DHEA-Sulfate is deficient.
- Bioavailability of Vit D3 is deficient.
- Overall, the hormone profile seems to be in a better position (much more androgenic) than 3 months ago but there is still room for improvement, particularly in Free Testosterone and DHEA-S.
CONSULTATION WITH DOCTORS
I visited a urologist from the Spanish Health System and explained my issues with Finasteride, focusing on ED and the prominent vein with sensitivity. He was very sceptic about Finasteride giving me any persistent side effects and pretty much laugh at the “Post-Finasteride Syndrome” issue, saying he had not had a case in 30 years and we should be a “selected club”. Pretty frustrating.
He checked the vein and said it was just normal. I showed him a picture of the vein in erection (looking more prominent and purple) and told him I felt sensitivity on it and he said that may happen and go away after 2-3 months but I have been with it for 2 years. No answer to that. The only “useful” thing about the visit was that he has ordered a Doppler test to evaluate vascular issues given that I am not responding well to Tadalafil. I will potentially be able to get the Doppler done by December/January.Additionally, I visited an endocrinologist with experience in PFS in Spain and, after 45 minutes of conversation and blood test results, he prescribed the following treatment in order to stimulate the hypophysis/hypothalamus and raise neurotransmission in the brain:
- Tadalafil 5mg (daily)
- HMG-Lepori 75mg Inyections (every 15 days for 3 months)
- Clomid 50mg (every second day)
- Tamoxifen 10mg (daily)
- Bupropion 150mg (daily)
- Vitamin D3 1000ui (daily)
And keeping the protocol I have been following as it seems to be helping and made total sense to him. However, after checking the professional opinion of my main doctor, he believed that treatment with HMG was certainly “too much” at this stage and was contrarian to use Tamoxifen due to its potential undesired side effects. Given the situation, he suggested the following:
- Keep current protocol.
- Tadalafil 5mg (now daily)
- Clomid 50mg (every second day)
- Vitamin D3 1000ui (daily)
If after one month I do not notice cognitive improvement:
- Bupropion 150mg (daily) - To discontinue if I experience negative side effects that do not fade after 3 weeks.
Lastly, I also visited my GP in Spain who showed great interest in Post-Finasteride Syndrome following a dossier I passed to him. He told me he could not treat me or advise as this condition was out of his scope but at least he believed me and empathise with me, which makes a great difference.
My next steps will be following the treatment that my main doctor suggested with Clomid only. I will have a natural IA (not pharmacological) in case I see an alarming surge in estrogen.
I will get a test after one month and previous to start Bupropion, potentially a ZRT Neurotransmitters + Urine Hormone Panel which is quite expensive but will give me a picture of the baseline before touching any neurosteroids with Bupropion. Even though I am well aware those results are not representative of the serum floating in the neurogenic system as the sample is taken in blood/urine, it is a fair proxy and may show some interesting result to take action into.
2 Likes
Please visit this website and you will find a list of doctors who will believe you because they are somehow familiar with the disease and will be potentially be based in your country. If you need more specific information, feel free to write me a private message.
Jesus I can’t handle this situation. It’s unfathomable that this problem has plagued men for so long now and yet still, despite all the recent studies, we still have an international phenomenon of doctors laughing in our faces.
Your situation is VERY similar to mine. I have had massive improvements over the past few years but nearly identical to what you still have left as far as shrinkage, lack of quality erections even with tadafil treatment, loss of penis brain connection as well as of course the fatigue, low mood, ect.
As I am about to start HCG, sometimes I wonder if I’m better of leaving things as they are, as bad as they feel because I am tremendously better than where I started. Having said that, I still get flashbacks of what life used to be like and that makes me realize I am not even close to where I was before. I feel strongly what has happened as I’ve adapted to the “new normal.” Which is basically settling, because you are afraid to push the needle in the wrong direction.
2 Likes
How is your treatment going on? Did you notice improvements with Clomid- Tamox?
I am not going to use Tamoxifen as stated above. I plan to add Clomid to my treatment on the 7th of November.
From 1st of November, I am also taking: Vitamin D3 1000ui (daily), Tadalafil 5mg (daily now rather than every second day) and DHEA 50mg (every second day).
For some reason, the forum does not allow me to edit the original post anymore. I think it is limited to 9 editions which is a shame because people will not be able to keep track of the progress in the OP.
Just a few notes to update the post.
I notice no difference between Tadalafil 5mg daily or every second day, it is worrying. Indeed, I would say I am having more shrinkage than before in both length and girth. Erections are not better overall.
I introduced Boron 3mg in order to help lowering the SHBG so more free testosterone flows to my brain. I am aware results are limited so it is just a little help.
I have been now for one month in Clomid 50mg every second day (first week and a half were in 25mg and 37.5mg). So far I have noticed very little, maybe it is too soon. My sperm looks thicker (more healthy) than before and I have developed acne in the back (which I have never had before).
Yesterday, I took the ZRT Neuro Advance + Urine Hormones so I can control my levels of testosterone and estrogen while on Clomid and do have a picture of how my neurotransmitter profile looks prior to Bupropion. I will post results when I get them.
Following medical advice, today, I have started Bupropion 150mg (daily) to fight the cognitive sides (lack of motivation, lack of concentration) and try to get my life back on track.
Last day of the year, I believe it is a good time to update the post.
Test results
First, I got my results from ZRT Labs (Neuro Advance Profile + Urine Hormones), from the 8th of December:
Potentially interesting things such as very high androgens (Testosterone, DHT, Androstenedione, etc.) and estrogen which was expectable due to Clomid. DHEA is also elevated while DHEA-S was depressed a couple of months ago. I will test this is blood in February.
Concerning neurosteroids and neurotransmitters, I do not know how to interpret the excreted (urine) results so I am waiting on a neurologist opinion but something seems to be wrong with the GABA/Glutamate axis as expected. It is remarkable that Allopregnanolone is way over the top while I was expecting a depressed result, even though this do not necesarilly reflect the true values in the neurogenic system.
Clomid + Bupropion therapy
I do not have blood test yet so I cannot assess the effects of Clomid on my hormone profile. Therefore, I can only tell you how I feel. After two months on Clomid, semen is definitely thicker and more healthy looking, I developed acne in my back and not many more changes. I do not seem to react to higher T even though I do not know my current levels.
Bupropion made me anxious the first week, but the negative side effect ceased after that period. Usually, you should give 3 months to this kind of medication to changes to take place. So far, I did not feel more active or motivated, or at least not radically different.
Nevertheless, during the last two weeks, my sexual life is gradually changing. I feel like engaging with my partner again and being able to get horny. Erections are still relatively weak and do not feel right, libido is still low but, mentally, I am able to get aroused again and enjoy a sexual relationship. Moreover, I was even able to initiate sex by myself. This did not happened since last June or so.
Said that, I am still far from normal but it is encouraging to see a certain degree of improvement in that aspect. I do not know if this is Clomid, Bupropion or both but something is definitely working to improve the situation. Will this be permanent? Who knows!
Changes in Sodium Butyrate dosage
I believe this is quite irrelevant, but I will report it. I have increased (doubled) the dosage of Sodium Butyrate from 1.2g to 2.4g daily.
1 Like
Neurologist opinion
Looking at my ZRT test, he stated the following:
- Far too high glutamate, which is potentially toxic at high concentration – even more since its opponent GABA is (too) low.
- Low Norepinephrine (VMA)
And recommended:
- N Acetyl Cysteine 600mg (twice per day)
- L-Tyrosine (Norepinephrine precursor) 2 times 500 mg per day (not in the evening)
- B-Vitamins (B2, B6, B12)
Hormone/Urine comments
- Due to Clomifen and even more due to DHEA highly increased estrogens – if too high, gynecomastia, etc.
- Too high Androstendione, DHT/Dihydrotestosteron, Androstanediol – DHEA effect – also increase in progesterone metabolites
DHEA intake in men leads usually to estrogen increase and not so to testosterone increase!
But if you stay with it, you could suppress the aromatisation very effectively with anastrozole 1 or 2 times per week! (very good tolerance)
Clomifene increases testosterone (and estrogens) but with longer use often has the paradoxical effect of reducing sexual desire and erectile function! I would definitely prefer ßHCG (Brevactid 1.500) 2-3 times weekly 300 – 500 U subcutaneously.
Actions taken
Since last week, I was taking a natural AI (based on a Curcumin complex) that I have already left after 10 days as I am feeling less estrogenic. After that advise from the neurologist, I definitely quit DHEA too, at least by now.
I will implement their supplement recommendations at some point during February.
How am I feeling?
Bad, I am feeling very badly emotionally … like very dependent on others, low energy, difficulty to perform simple tasks, no concentration or motivation, etc… very dispersed.
The sexual improvements I posted before and partially gone, particularly in the ED department.
Furthermore, Bupropion seems to be giving me a rare side effect (frequent urination and urge to pee).
Something is clearly not going well these days. I do not know if it is Bupropion, Clomid, the AI, quitting DHEA, neurotransmitters unbalance … After +2 months, I am gonna begin to taper off Clomid to 37.5mg, 25mg, etc. to finish with it at the beginning of February.
For instance, I received invitations for two first-stage interviews (writing a report) for highly qualified jobs related to what I was doing before. Instead of been keen and driven to do a great report and take this great opportunity, I feel like I am not willing to do it and I wish they would have not invited me into the process.
1 Like
Sorry to hear u doing worse these days, but you’ll get better again im sure.
Keep us updated how will the neurotransmitter therapy go.
Btw, did the neuro doc comment the nice level of allopregnelenole?
I took accutane for 4 weeks. Never been the same. How did you treat the emotional blunting and depression?
I hope so.
I am slowly tapering off Clomid, taking 37.5mg every 3 days, later 25mg every 3 days, finally 25mg every 4 days. I am planning to quit the first week of February.
No, he did not. It is not that nice, indeed is too high, probably due to the androgen therapy.
Basically, sport (running and weighting at least 4 days per week). And maybe ALCAR 1000mg 3 times per day helps a bit but sport was 90% of it for sure.
Is there any science behind tapering off clomid?