ACTH getting lower and lower, but can't test hydrocortisone

[judyinthesky]

Hello
Question regarding low ACTH.
Mine is now at this:

2.9 pg/ml (7.3-63.3 Norm)

I have extremely severe MCAS and medication problems and very severe ME plus leaking spinal CSF fluid.
A knife point of anything remotely activating can send me into a crash from which I never recover back to baseline.

My endo ruled out Addinson.
My cortisol day profile is normal but I suspect meanwhile slightly below the range - have to test again.

I can't do the stress test as I cannot go into the hospital and in the past have reacted awfully to steroids.

On what alert should I be?
I'm very underweight and hungry, but because eating and drinking inflames my brain I can now only drink on a benzo (please no debate about this I really have no other tolerance) starting late in the afternoon when less reactive.
I would love this to be a joke.

My question would be:
We aren't likely to go into a crisis because of this cortisol, apart from a crash, aren't we?

What should I observe, the cortisol level?

Anyone in a similar low situation that can't take hydrocortisone?

I also know from studies that it doesn't help most with ME, my main question and concern would be the continuously falling ACTH.

My PTH is also inexistent.
But I really can't test the hydrocortisone, because any lower baseline would take away all my ability to drink.
I react to saline and enteral artificial nutrition formulas as well.

Thanks a million!

 

[sunshine44]

Woowwwww

You just described so much of my life except I currently don’t have severe fluid/food intake issues. It’s not going great but not at that severe level atm.

I’m severe. Bedridddn 6 years and my adrenals are so messed up. No one has ever taken my acth. But last cardiologist said, this is clearly an adrenal issue. My night time cortisol was normal twice though and no one has really done thorough testing on this.

Llmd put me on Ativan for sometime in 2017 2018 but I became way more severe on it, I’m assuming bc it drops cortisol and I need cortisol. Yet, tiny amounts did assist some of the seizure stuff at night and mcas a tiny bit. I hear you. Gotta take what little works for us in these states and helps keep our body functioning even if not ideal.

I often wonder how they go rock hard (adrenals), I can’t move, yet I don’t go full blown Addison’s into a coma. It’s insane.

In the mornings I just have to lay here recalibrating as sleep is so hard on my adrenals etc. very tough window for me.

I have never heard anyone else say they also have leaky spinal fluid but I feel it in my severe crashes. Everyone thinks I’m insane. I’ve never had a spinal mri. I wish someone gave me one but I was often dismissed even though I lost ability to walk. It’s so painful and I feel bubbles and it causes immense head pressure etc at times. Travels if from top of spine where neck meets torso. Like that small hump area. Truly horrific. When they tell me to take Tylenol, I’m like, this is waaayyyyyy different than a migraine.

I have severe mcas issues too although I’ve done things that have improved it past 2 years. Currently crashing in hell with pist covid stuff though.

I can’t do steroids either!! So I’m like what do we do??? One thing that has slightly assisted adrenals/endocrine etc. is I take half of ancestral beef adrenal capsule in am and half at night. At first I could only make a paste with coconut oil and rub on skin. It seems to act like a steroid for me without the side effects for my adrenals. But, I’m assuming I need a higher dose but system is so sensitive I’m just hanging out here for some time.

I also utilize Healy scalar energy frequency program and that has assisted them (and mast cell) before I could tolerate beef adrenal.

What a mess. Truly praying for you. Can you take any suppositories of fluid? I know it’s insane but maybe short term if you can’t do ivs. Some have utilized this but not myself. I know very little of it.

 

[Judee]

@judyinthesky, @sunshine44, have either of you tried licorice?

You have to be very careful with it because it can lower potassium levels but they make little pure licorice candies (no other ingredients but licorice) similar to the ones that Ken Lassessen says on his website have improved some with ME/CFS. https://cfsremission.com/treatment/symptom-mitigation/core-licorice-glycyrrhiza/

You can check licorice against any medication you are on here: https://www.drugs.com/drug_interactions.html
or here: https://hellopharmacist.com/drug-herbal-interactions (I like to check them both. )

 

[Faith2007]

My response is to discuss cortisol testing, how I test to make sure I'm not allergic to supplements or foods before I eat them, and how to raise cortisol without hydrocortisone.

So I have multiple endocrine system issues, and the opposite problem, which is that I make too much cortisol. My doctor also said it's possible that I have MCAS. I have symptoms of it, but haven't been properly tested for it, and wouldn't be considered severe.

Here is how my endocrinologist handled cortisol testing for me, though I need my CFIDS doc to interpret it, since she uses a different range for interpretation. I did the blood testing at 8:30 a.m. for cortisol. And then she had me do cortisol saliva testing at 11:30 p.m. for two nights in a row. So I now will be able to compare these two results.

I see a holistic doc with an MD educational background who does kinesiology (aka muscle testing) on me to see if I can tolerate or if I am allergic to a food or supplement, what brand of the supplement may work best on me, and what the dosage should be. This works for anything I can hold in my hand, and I will use this before I start a new supplement. She is also the one who found me a supplement that helped with my symptoms related to too high histamine.

My cortisol levels are controlled with a supplement I take. I know it works since my cortisol levels have gone down from 600 to just under 400, with 400 being the highest end to be considered within limits for a range my endocrinologist would use.

The treatment to improve cortisol in those who can't take hydrocortisone is in one of the books my CFIDS docs use, From Fatigued to Fantastic!, written by Dr. Jacob Teitelbaum, an internist and the former medical director of the Fibromyalgia and Fatigue Centers. He recommends vitamin C, pantothenic acid, licorice if you don't have high blood pressure, and chromium. It's on pgs. 90-91 of the 3rd ed. of the book.

Dr. Teitelbaum has multiple things written in his blog addressing adrenals and cortisol, and there is mention of ACTH in at least one of them here: https://www.vitality101.com/health-a-z-articles/2

I wish you the best with your decisions and treatment.

 

[linusbert]

and I feel bubbles and it causes immense head pressure etc at times.

thats interesting, i feel something similiar like bubbles, but its on my upper neck where it goes into the head.
i would describe it like a fizzling.
weird, what is this?

 

[sunshine44]

thats interesting, i feel something similiar like bubbles, but its on my upper neck where it goes into the head.
i would describe it like a fizzling.
weird, what is this?

Yes!! A fizzling. Like a alka seltzer dissolving.

 

[linusbert]

Yes!! A fizzling. Like a alka seltzer dissolving.

ok but what is this?

 

[sunshine44]

ok but what is this?

I truly think it’s spinal fluid leaking in me. After researching past 4 years. Because I get so many crazy symptoms after this that no pain reliever takes away. Or anything for that matter. I’ve yet to meet a dr that has a clue what I’m speaking of. That being said, I’ve mostly only seen er drs past 6 years.

 

[almost]

I have never heard anyone else say they also have leaky spinal fluid but I feel it in my severe crashes. Everyone thinks I’m insane. I’ve never had a spinal mri. I wish someone gave me one but I was often dismissed even though I lost ability to walk.

It's absolutely insane sunshine, that you haven't had [been given] a head & neck MRI (at least head). I've probably had five, and I'm about to have another. Not that this is a score I want to rack up, but given your symptoms and history it is near criminal [by your docs].

Your description could be very accurate. You could have an Arnold Chiari malformation or some other compression at the base of your brain. I do. The neurologist I just saw described my CSF flow at the base of my brain similar to what you did -- it is squirting through at high speed because the space is so constricted. This could cause the sensation you are feeling. There are a number of reasons things could be compressed there, so don't take this as a diagnosis. I'm only saying: 1) you're not crazy; 2) I pray someone does some imaging for you. You've been through worse.

Edit: I want to make clear that the 'insane' part is on the part of the medical community, not you sunshine. Please forgive any misunderstanding, as my own condition is suffering right now, and my ability to review my own words is a bit compromised. I hope you know that I think you're doing amazing with what you've had to deal with, and you have been let down by the Medical Industrial Complex.

 

[judyinthesky]

Woowwwww

You just described so much of my life except I currently don’t have severe fluid/food intake issues. It’s not going great but not at that severe level atm.

I’m severe. Bedridddn 6 years and my adrenals are so messed up. No one has ever taken my acth. But last cardiologist said, this is clearly an adrenal issue. My night time cortisol was normal twice though and no one has really done thorough testing on this.

Llmd put me on Ativan for sometime in 2017 2018 but I became way more severe on it, I’m assuming bc it drops cortisol and I need cortisol. Yet, tiny amounts did assist some of the seizure stuff at night and mcas a tiny bit. I hear you. Gotta take what little works for us in these states and helps keep our body functioning even if not ideal.

I often wonder how they go rock hard (adrenals), I can’t move, yet I don’t go full blown Addison’s into a coma. It’s insane.

In the mornings I just have to lay here recalibrating as sleep is so hard on my adrenals etc. very tough window for me.

I have never heard anyone else say they also have leaky spinal fluid but I feel it in my severe crashes. Everyone thinks I’m insane. I’ve never had a spinal mri. I wish someone gave me one but I was often dismissed even though I lost ability to walk. It’s so painful and I feel bubbles and it causes immense head pressure etc at times. Travels if from top of spine where neck meets torso. Like that small hump area. Truly horrific. When they tell me to take Tylenol, I’m like, this is waaayyyyyy different than a migraine.

I have severe mcas issues too although I’ve done things that have improved it past 2 years. Currently crashing in hell with pist covid stuff though.

I can’t do steroids either!! So I’m like what do we do??? One thing that has slightly assisted adrenals/endocrine etc. is I take half of ancestral beef adrenal capsule in am and half at night. At first I could only make a paste with coconut oil and rub on skin. It seems to act like a steroid for me without the side effects for my adrenals. But, I’m assuming I need a higher dose but system is so sensitive I’m just hanging out here for some time.

I also utilize Healy scalar energy frequency program and that has assisted them (and mast cell) before I could tolerate beef adrenal.

What a mess. Truly praying for you. Can you take any suppositories of fluid? I know it’s insane but maybe short term if you can’t do ivs. Some have utilized this but not myself. I know very little of it.

Hey
I could take a liquid mixed IV equivalent solution from the pharmacy but not anymore.

My leak is from a lumbar puncture. Do you have EDS or had an epidural? Otherwise it is possible to have lower pressure without a leak.

Couldn't deal with mini amounts of LDA, made me too activated and huge crash. Couldn't get on it.

Yeah it's a mess. Thank you for sharing.

 

[judyinthesky]

I truly think it’s spinal fluid leaking in me. After researching past 4 years. Because I get so many crazy symptoms after this that no pain reliever takes away. Or anything for that matter. I’ve yet to meet a dr that has a clue what I’m speaking of. That being said, I’ve mostly only seen er drs past 6 years.

There is a thing called functional intercranial hypotension. So you could have this without a leak, due to mechanical connective tissue issues for instance. Been hanging out in leaker groups a lot because my leak is iatrogenic.

 

[judyinthesky]

It's absolutely insane sunshine, that you haven't had [been given] a head & neck MRI (at least head). I've probably had five, and I'm about to have another. Not that this is a score I want to rack up, but given your symptoms and history it is near criminal [by your docs].

Your description could be very accurate. You could have an Arnold Chiari malformation or some other compression at the base of your brain. I do. The neurologist I just saw described my CSF flow at the base of my brain similar to what you did -- it is squirting through at high speed because the space is so constricted. This could cause the sensation you are feeling. There a re a number of reasons things could be compressed there, so don't take this as a diagnosis. I'm only saying: 1) you're not crazy; 2) I pray someone does some imaging for you. You've been through worse.

Edit: I want to make clear that the 'insane' part is on the part of the medical community, not you sunshine. Please forgive any misunderstanding, as my own condition is suffering right now, and my ability to review my own words is a bit compromised. I hope you know that I think you're doing amazing with what you've had to deal with, and you have been let down by the Medical Industrial Complex.

Just information: the minority of leaks will show on MRI, investigation is done with invasive CT myleogram etc.

 

[judyinthesky]

Thanks everyone. Does anyone know how cortisol would behave in a crash?
I know my crashes (2 per month) are longer during winter, first because seasonal worsening and second because cortisol is lower in winter.
So is it lower in a crash? If we have a crash following arousal, that could be, no?

 

[judyinthesky]

Also how is your low cortisol related to cravings? Obviously I'm extremely underweight, still interested.

 

[judyinthesky]

One more question: isn't liquorice a problem for mast cell activation? If it's a histamine liberator?

 

[Faith2007]

One more question: isn't liquorice a problem for mast cell activation? If it's a histamine liberator?

I would definitely talk to your doctor first before taking the supplement form of licorice.

I have licorice in one of my mixed supplements that I take for viruses. But I take the supplement Homoscysteine Redux by Nutri-West to reduce my histamine levels. So I may be taking something that more than counteracts it.

All the supplements I take I have discussed with doctors. But mainly my functional doctors are the ones telling me to take them.

 

[judyinthesky]

I would definitely talk to your doctor first before taking the supplement form of licorice.

I have licorice in one of my mixed supplements that I take for viruses. But I take the supplement Homoscysteine Redux by Nutri-West to reduce my histamine levels. So I may be taking something that more than counteracts it.

All the supplements I take I have discussed with doctors. But mainly my functional doctors are the ones telling me to take them.

Thanks
My system is so sensitive that despite on antihistamines and Ketotifen an insect sting creates a week long crash. I doubt I want to do histamine liberators.

 

[SWAlexander]

In yesterday's presentation, I was reminded of the complex interactions between leaky gut, C. diff infections, and the role of bifidobacteria in maintaining intestinal homeostasis, particularly following COVID-19.

It's clear that it's not just COVID-19 that can harm gut bacteria; previous infections like C. diff can severely deplete bifidobacteria levels, as confirmed by a stool test. Additionally, my cortisol levels have plummeted to a low of "1," and I have also been diagnosed with type 2 diabetes.