I’m not arguing. I’m asking you to do exactly that - share info.
Also, we all got into this mess because we took a risk. And whether you want to accept it or not, trusting you is a risk. You’re just a random poster on the internet like anyone else. So belittling people for not accepting your protocols is a bit ironic. I think we’ve all learned to be a bit more risk averse.
Had a short synacthen test last week and they found my adrenals to not be functioning at the right level. Going back for a long synacthen test this work to confirm this result. They will then start exploring the HPA axis to work out treatments to boost adrenal function.
Is there a new protocol formulated toward this theory? Did you simply add Prednisone at the 7.5/7.5/5/5 dosing to what you were already taking? I’m curious mostly because I’m on testosterone enanthate, masteron enanthate, and Vitex, and really haven’t experienced any significant cognitive or sexual improvements. I still have poor libido, feelings of malaise, and an all-around lack of “zest” for life.
Are you suggesting that non (or low) responders to testosterone, like me, should be looking to add Prednisone to their drug cocktail?
Is there any reason you’re taking pramipexole along with the other drugs?
That people continue to engage with JQD and take him seriously, shows that this entire forum is a joke. Dont you realize that he does not suffer from PFS but has a serious mental disorder.
This entire community is a joke, because it engages with people like JQD, in my opinion.
How JQD hasn’t been banned after being “cured” or “90% cured” by literally dozens upon dozens of different things in a matter of weeks is BEYOND me. LEAVE US THE F ALONE! NOBODY CARES! NOBODY!
Private message the people that do.
I think Justdonecoke might actually be onto something here, I’ve never heard of adrenal fatigue on this forum before and it sounds like it might possibly explain quite a lot of what we’re going through…oh wait come to mention it it had already been theorised to death and tried to fix by dozens of sufferers, some under the care of the likes of Crisler and Shippen, by about 2010 with no one getting better on the back of it.
Try again mate, maybe you’ll get lucky with your centenary PFS theory. Alternatively, please finally ban this clown.
Part of the stress response of the adrenals is allopregnanolone and THDOC. They are produced along with cortisol in response to stress and all 3 exert negative feedback on the HPA axis.
So messing around with cortisol may not be enough to fix an adrenal disorder. Adrenal fatigue may or may not exist. We certainly can’t write it off just because conventional medicine doesn’t acknowledge it (probably because nothing shows up on diagnostic tests). As we know, medicine is still in the stone age.
One thing I will say is that people on adrenal fatigue forums refer to “crashes” the same way people with PFS do. I’ve never seen the term crash used for anything else.
I was just booking a ticket to kos, now after reading this thread I’m torn
Yes, I thought this nonsense was behind us but apparently not. I’ve lost count of the number of times JustQuitDut has claimed to have experienced 100% reversal. I thought with his willing departure to his other forum, that he had made a decision to leave this site of his own accord and would discontinue this self-aggrandizing behavior.
Alas, a tiger never changes its stripes. One can only cry wolf so many times before all credibility is lost, and I and others are tired of the constant theoretical nonsense and claims. Those that wish to follow this users posts can do so on solvepfs.com going forward.
JustQuitDuit, sorry but you have outstayed your welcome on this site. I have tried to be diplomatic in the past, but I’ve reached my limit with this theoretical nonsense. Considering the closing of the Theories section and that you have joined another site to push your ideals there, there is no reason for your membership here.
Wishing you the best of luck but for the betterment of both sites, its best if we part ways permanently going forward.
To all – the Theories section is locked so that efforts can be focused on scientific research studies, as noted on the PFS Foundation site, without distracting users’ attention, finances, time and energy on red herring theoretical nonsense. If you still wish to theorize, visit the other site. Sorry for being heavy-handed, but at this stage of the game and considering what’s on the line, it is what’s required.
edit: People with chronic fatigue syndrome refer to crashes as well. Much of PFS seems to fall within the CFS-fibromyalgia disorder spectrum, with the sexual stuff on top.
Crash is a very generic term. People with manic depression ‘crash’ into episodes. It just a term that describes a rapid change in state.
Fatigue is an incredibly common symptom of a vast range of illnesses. It cannot be linked as a common denominator.
The problem I have with the concept of Adrenal Fatigue is that there’s no clear definition. It’s just telling people who feel tired that they need to let their glands recover. Recover from what? How will you know they’re recovered? It’s specifically vague so that quack doctors and bloggers can sell you persistent treatment. They claim recovery from Adrenal Fatigue takes years, meanwhile you need to pay for their supplements, protocols and consultation fee otherwise you will never get better. It’s bullshit.
Adrenal Insufficiency on the other hand is a legitimate illness. This is when your body isn’t producing adequate levels of cortisol, because either:
a) the pituitary isn’t sending a signal. (primary)
b) the adrenal glands are dysfunctional. (secondary)
c) there’s an enyzme deficiency. (CAH)
Whether you have adrenal insufficiency can be verified by a synacthen/ACTH stim test. Some of us have found relative insufficiency, others have found they’re adrenals are fully functional.
I’m all for people exploring ideas and experimenting, but I also think Mews justified in locking down the theories section. It would be incredibly easy for non-sufferers to dismiss PFS based on the delusional posts on here. This site should remain an objective scientific proof of the illness, while SolvePFS can be more theoretical.
I wasn’t only linking CFS and fibromyalgia via fatigue. FYI, fatigue is a small part of CFS and often isn’t even a primary symptom. If you research those two, you will find that they involve:
and so on. There are more, but I’ll just stop there.
I’m not the only one who has noticed the overlap. Do a search on this forum.
edit: With regard to adrenal fatigue, I was just saying that we can’t say it doesn’t exist. I don’t believe the supplement pushers either, but the adrenals are highly complex and I doubt that we have every adrenal disorder fleshed out at this point. I also doubt that a normal cortisol response tells you that your adrenals are functioning properly. You can be on fin and have a normal stimulation test. But your adrenals won’t be producing allopregnanolone or THDOC properly, which is the portion of the stress response that addresses the nervous system.
Is it possible to treat adrenals with relative insufficiency to get them back up to their original levels?
That’s what I’ve been trying to find out since I got my results, but from what I understand - no.
Basically, below a certain level (Addisons) they need to be replaced with hydrocortisones to avoid adrenal crisis.
Other than that there’s no recognised treatment to improve endogenous cortisol output.
Adrenal cortex supplements supposedly help, such as: amazon.co.uk/Adrenal-Cortex- … B000FGWDAY
I’ve used two bottles without any improvement.
The problem is understanding where the dysfunction is. If a precursor isn’t being metabolised effectively upstream, then it doesn’t matter how healthy the adrenals are since they aren’t receiving enough input. This is the case for Congenital Adrenal Hyperplasia, which is a result of a deficiency in one of the upstream enzymes. (17-HSD, 3B-HSD etc.)
My belief is that progesterone metabolism is impaired after 5-AR I inhibiton, and this causes a cascade of secondary issues downstream.
We already know that 5-AR I metabolites such as DHP and THDOC remain undectable in PFS patients vs controls in the Italian study.
Just hope subsequent research explores this further, or else someone finances independent testing to observe hormonal fluctuations following ACTH injections.
@dannyfc, So you are low? and you have low symptoms? and doctors wont trial a low dose of cortef to see if you get any relief? I also have some supplements and they don’t do jack squat. I just got the saliva test from my doctor. I got light sensitivity, fatigue, poor digestion, dizziness, Stress intolerance, Cold intolerance, inability to relax… All sorts of fun stuff. I am sure its not addisons level but it very uncomfortable 24/7.
Have you seen anyone after your synacthen test?
I’ve my appointment Wednesday for the long one and after that my endo is going to look into the issue with the HPA axis to try and identify any anomalies to treat.
I did a synacthen test. Of the three pass criteria: basal cortisol, cortisol response, and absolute post cortisol level, my test failed the latter two.
Thing is, beyond Addisons there is no recognised treatment for relative insufficiency. From a doctor’s point of view despite being sub-optimal my adrenals are doing enough for me to function without risk. Intervention is risky, and no doctor will voluntarily put a patient on long-term dependant medication unless they absolutely need it.
I’ve explored the possibilities of hydrocortisones, even buying some, but came to the conclusion that it’s not worth it. From what I’ve read, anecdotally most people don’t feel any better while on them, and the side-effects are quite pronounced.
As JQD found out some doctors advocate taking a small dose HC to allow the adrenals to ‘rest’ and recover. But I personally found very little to verify that, or any reports of people responding well to it.
At this point we don’t know enough really, and low cortisol isn’t a exactly universal trait amongst PFS members. As I mentioned before, I’d guess more to a enzyme impairment then an absolute failure of the adrenals.
I have found plenty of stories of people suffering from adrenal issues and not getting help from their GP or Endo. Despite having all the testing done and showing very very low results. Some people only get the help they need in the ER once they are in total adrenal crisis. PFS is as real as adrenal insufficiency to these same doctors. I found only a couple causes on here where someone has taken cortisol. I don’t think its enough evidence to conclude that it will not ever be beneficial to some of us. IDK about you guys but this fatigue is making me almost completely non-functional.
Do either of you have sexual symptoms? I don’t really have any at all although you could argue at times a minor decrease in libido.
Key symptoms atm are, terrible sleep 5 hours unfulfilled every night, cold hands and feet permanently and brain fog which is debilitating at times. Varies over the course of the day.
Going in for my long synacthen test today and if it confirms the short test will be going back to endo to look at HPA axis. Will raise the theories you guys have mentioned here as he seems relatively receptive.