Is the HPA Axis the Elephant in the Room For ME/CFS and FM?

Strike me lucky

Well-Known Member
Main stream medicine do use antidepressants to help rebalance the hpa axis but i dont know if psychobabble or not like the chemical imbalance theory they use to use for depression etc.

There are some forums that look onto hpa axis dysfunction/adrenal fatigue and use hormones and drugs to improve neurotransmitters. Its common to hear them say ssri's help calm down an over stimulated noradrenaline system as it turns down the this system down.

I think some say the same about cortisol and that good levels of cortisol can keep noradrenaline down to normal levels which is generally high in stressed people.

This seems to be the common theory of getting dhea and cortisol levels in an optimal range then try to adjust neurotransmitters. .then getting the right hrt for women and trt for men.

I think for many cfsers, controlling our cause of stress is the key which is usually immune/infection related. Easier said then done.
 

Who Me?

Well-Known Member
There was a thread about this on PR which is where I got the idea of glandulars. I think Mary talked about. I think I got Nutricology Hypothalamus.
 

bobby

Well-Known Member
Main stream medicine do use antidepressants to help rebalance the hpa axis but i dont know if psychobabble or not like the chemical imbalance theory they use to use for depression etc.
that's what I don't like about the HPA-axis story - it is being hijacked by the psych brigade. I have never seen any convincing evidence about this, just hypothesis. I would like to hear a real succes story, if anyone has one...
 

Veet

Well-Known Member
This seems like a good idea, but how do you know you are getting the right amount at the right time? Wouldn't too much of one and too little of another upset some balance and make things worse? Not questioning the effectiveness, just wondering how to make it work without making something worse.
I take all my supps by symptoms and self-testing. Within half an hour of my first hypothalamus dose, I stopped the hyperventilating that happened everytime I walked out into the heat. I probably started the adrenals first, inspired by the ingredients in one of Teitelbaum's supps. I can't recall the immediate effects. I added pituitary when I was no longer able to continue w/ low dose Klonopin for sleep. I was amazed that the pituitary was a significant help for sleeping, at least as good as the rx had been. At certain points in my detox program, I was able to discontinue each of them.
 

Seanko

Well-Known Member
that is what I think too. 'fixing' the HPA axis isn't gonna fix anything, cause it's not the core issue, it is an effect of something else going wrong.

Yes, @bobby.

*Think of the hypothalamus as a regulator (or thermostat) for the autonomic nervous system & pituitary gland.

*It is part of the limbic system (or the lizard brain) which evolutionary is one of the oldest parts of the brain & is implicated in the control of temperature, heart rate, blood pressure, hunger, thirst, sex drive, sexual arousal, predatory aggression & fight or flight responses (Source: Oxford Dictionary of Psychology)

*It then sends signals via the nervous system or hormones (the endocrine system) to start a chain reaction. The Hypothalamus sends hormones which act on the pituitary gland which releases hormones to act on the adrenal glands, these in turn release adrenaline & noradrenaline.

*The hypothalamus is a pretty robust, primitive piece of evolutionary technology. Could it be subject to break down? Maybe but IMHO it is just responding to inputs from elsewhere eg cytokines/antibodies from the immune system telling you to go & lie down and conserve energy (sickness behaviour).
 

bobby

Well-Known Member
Could it be subject to break down? Maybe but IMHO it is just responding to inputs from elsewhere eg cytokines/antibodies from the immune system telling you to go & lie down and conserve energy (sickness behaviour).
It's a bit like a wild goose chase, isn't it? Everything is the effect of something else... ugh
 

Strike me lucky

Well-Known Member
Maybe but IMHO it is just responding to inputs from elsewhere eg cytokines/antibodies from the immune system telling you to go & lie down and conserve energy (sickness behaviour).

Im sick of lying down : (
Also makes me wonder if cytokine blockers could be dangerous as we are then ignoring symptoms?? Not to different to stimulants in that they help us ignore fatigue and pain. Or maybe the cytokines are just incorrect signalling??
 

Strike me lucky

Well-Known Member
I'm hoping that this is the case, not the former. It's OK to turn off the fire alarm, provided the house is not, in fact, on fire! :)

They say prednisolone and co are like sledge hammers at controlling cytokines and inflammation etc but they seem hit and miss as far as making cfsers feel better. Maybe we are also lowering the wrong ones? ??? At the same time with pred?
 

Remy

Administrator
They say prednisolone and co are like sledge hammers at controlling cytokines and inflammation etc but they seem hit and miss as far as making cfsers feel better. Maybe we are also lowering the wrong ones? ??? At the same time with pred?
Pred and co would definitely suppress CRH. That might make you feel a lot better at first until the steroid side effects start to kick in, depending on the dose, how long that takes...
 

Strike me lucky

Well-Known Member
Pred and co would definitely suppress CRH. That might make you feel a lot better at first until the steroid side effects start to kick in, depending on the dose, how long that takes...

I wish i could get my hands on cycloferon as i think its anti inflammatory effects are what help with symptoms. Mostly interferon alpha and beta interferon , where gamma interferon which is inflammatory is not suppose to be stimulated but i think it may in some who have felt worse on it??
 

IrisRV

Well-Known Member
They say prednisolone and co are like sledge hammers at controlling cytokines and inflammation etc but they seem hit and miss as far as making cfsers feel better. Maybe we are also lowering the wrong ones? ??? At the same time with pred?
In my early days of this illness I developed bad MCS. It would get worse and worse until I couldn't even leave my house without reacting to something. Then my PCP would give me a Medrol dosepack (methylprednisone).

I always felt MUCH better while on it -- about a week. It also seemed to reset my sensitivity and I could function for a while until the rxns got completely debilitating, then I'd get another dosepak. Part of me wanted to stay on it continuously because I felt so much better, but I know that's probably not safe. My PCP wouldn't have done it anyway, so no point wishing.

Now that my symptoms have changed and I don't have MCS, I don't know if it would do anything for me. My guess is that it's a stage of the illness thing. I'm becoming convinced that ME/CFS naturally changes over the years, as Hornig discovered. If you try prednisone at the right stage, you have a hit. At the wrong stage, you get a miss.
 

Remy

Administrator
In my early days of this illness I developed bad MCS. It would get worse and worse until I couldn't even leave my house without reacting to something. Then my PCP would give me a Medrol dosepack (methylprednisone).

I always felt MUCH better while on it -- about a week. It also seemed to reset my sensitivity and I could function for a while until the rxns got completely debilitating, then I'd get another dosepak. Part of me wanted to stay on it continuously because I felt so much better, but I know that's probably not safe. My PCP wouldn't have done it anyway, so no point wishing.

Now that my symptoms have changed and I don't have MCS, I don't know if it would do anything for me. My guess is that it's a stage of the illness thing. I'm becoming convinced that ME/CFS naturally changes over the years, as Hornig discovered. If you try prednisone at the right stage, you have a hit. At the wrong stage, you get a miss.
Back to CRF. It's intricately involved in mast cells and suppressing it with pred would make the reactions subside substantially. Over time, your mast cells probably calmed down and you needed the pred less and less.
 

Snow Leopard

Active Member
I spend a few months trying to read all the neuroendocrine studies and and trying to built a hypothesis. My conclusion was that the findings were not that important and any mild HPA dysfunction in specific patients is likely due to issues elsewhere.

Not only do I think it is not "the elephant in the room", I'm willing to bet there will be no big breakthroughs here either (there have already been plenty of studies on the HPA axis and not much interesting has been found). Any breakthroughs will be found by looking elsewhere.

YMMV. But I'd like to see some sort of trial/evidence before believing the hype about "treating the HPA axis".
 

IrisRV

Well-Known Member
I've got ustekinumab open in my browser. It blocks cytokines somehow. I keep wondering if it might be appropriate for some of us, maybe.
Ustekinumab[2] (INN, experimental name CNTO 1275, proprietary commercial name Stelara,[3] Centocor) is a human monoclonal antibody. It is directed against interleukin 12 and interleukin 23, naturally occurring proteins that regulate the immune system and immune-mediated inflammatory disorders.[4]
-Wikipedia

Hmmm... I have very high IL12 and very, very, very, very low IL23. Apparently Ustekinumab isn't likely to be good for me. This is my problem with so many of these things. They're too broad. We could be trying to help something with this product and unwittingly totally screwing up something else. Sigh....
 

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