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

judyinthesky

Senior Member
Messages
381
In the USA the Cortisol minimum level was 8. Are you on prednisone? Maybe you need hydrocortisone. I think you should see an endocrinologist. Could be an Addison crisis.

Obviously we are "seeing" one - my partner via telehealth. I don't tolerate any steroids.

I don't think it's Addison, people with severe ME also have low ATCH and cortisol
But yeah I'll take it if I'll tolerate it.

This ist the whole problem of this thread.
I think my cortisol itself wasn't even that low last time, it is just getting lower.
My awakening response is there. But endo will measure again.
 

SWAlexander

Senior Member
Messages
1,985
I know
people with severe ME also have low ATCH and cortisol
Also, Infections or Inflammatory Diseases:
Certain infections or brain inflammation affecting the pituitary or hypothalamus can also result in decreased ACTH production. This broader condition involves a general decrease in pituitary hormone output and can include low production of ACTH among other hormones.
Ask your doctor if he thinks an MRI could bring some answers.
 

judyinthesky

Senior Member
Messages
381
I know

Also, Infections or Inflammatory Diseases:
Certain infections or brain inflammation affecting the pituitary or hypothalamus can also result in decreased ACTH production. This broader condition involves a general decrease in pituitary hormone output and can include low production of ACTH among other hormones.
Ask your doctor if he thinks an MRI could bring some answers.
Yes. I have a CSF leak so both may be coming together. An MRI a few years ago didn't show anything as most iatrogenic leaks aren't shown on MRI, meanwhile I am so severe that I avoid it, because the relationship seems obvious anyways and my endo is so kind to understand that I'm not able to see doctors without extreme impact.
 

Carl

Senior Member
Messages
412
Location
United Kingdom
Obviously we are "seeing" one - my partner via telehealth. I don't tolerate any steroids.

I don't think it's Addison, people with severe ME also have low ATCH and cortisol
But yeah I'll take it if I'll tolerate it.

This ist the whole problem of this thread.
I think my cortisol itself wasn't even that low last time, it is just getting lower.
My awakening response is there. But endo will measure again.

As already recommended, Vitamin B5 in high doses can help a little. I get days where the mornings are okay but on others I feel totally dead until the afternoon. I haven't yet worked out what helps, maybe it's a significant delay in effect but I suspect that B5 could be part of it. I take 1 tsp of Pantothenic acid powder, once a day but I could do with it multiple times I believe. I will have to try it at some point.

The pituitary is affected in anyone with "real" ME/Fibro and Cortisol is also affected as well as sex hormones and anything else released from the pituitary/hypothalamus. For decades I have used the TCM herb called Tu Si Zi (Cuscuta Chinensis/Dodder seed). Tests on animals has shown that it increases the weight and function of the pituitary gland. It has fertility enhancing effects and also anti cancer effects. It might turn you into a stud with the wind blowing in the right direction :rolleyes:. It can also help regulate the adrenal glands lowering anxiety which can be very calming as it treats the kidneys. The kidneys are hit hard by ME and the nervous system in the kidneys is affected which can get as far as reducing the adrenal gland function in advanced states. That can eventually cause Addisons disease. I was tested for that but on the day of the test I stopped taking Tu Si Zi and my short Synacthen test came back okay showing fairly high levels of cortisol. Best of all it treats the HPA axis which can help somewhat which is why I have used it for so long.

BTW Tu Si Zi can have constipating effects due to it being high in Tannins. However the Tannins are high in Bioavailable Quercetin. It is often taken with Gou Qi Zi frequently called Goji berries which it is boiled with. Goji berries can have a loosening effect on the bowel, especially when the berries are eaten but considerably less so when boiled. They are also fairly anti inflammatory. There are many positive effects of Tu Si Zi, there is a review article on the seeds on the web. It does seem to have beta blocking type effects and it does lower the pulse rate to much lower levels, similar to a highly trained athlete. My pulse was 49 bpm while taking it while athletes tend to be around the 60 mark.

Cuscuta chinensis Lam.: A systematic review on ethnopharmacology, phytochemistry and pharmacology of an important traditional herbal medicine - 2014 DOI: 10.1016/j.jep.2014.09.032

Plug the DOI into Sci-Hub for the full article. I don't think that the article on the web is full other than Sci-Hub because I have seen some articles which show significant parts but cut the paragraphs off. Therefore don't fall foul of that. ;)
 

sunshine44

Que sera sera
Messages
1,189
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.
Just seeing this. Thank you kindly! Do concur. Truly wild even with me politely begging these people for MRIs. I suspect they are all passing me off like a hot potato now. Huge liability issue based on what is found.

Appreciate your words!
 

SWAlexander

Senior Member
Messages
1,985
May I encourage everyone to push for MRI tests for Cortisol and ACTH. Don't give up.

I was diagnosed with low cortisol at age 30 after my symptoms had been overlooked for years - low blood pressure and permanent migraines. In 2007, a top endocrinologist diagnosed me with Addison's disease and recommended an MRI, which eventually revealed a Chiari malformation. Initially, I was prescribed 10 mg of cortisone for about two years. As my cortisol levels began to stabilize around 6.5, I was able to reduce to a 5 mg maintenance dose. Currently, I am on a daily dose of 20 mg of hydrocortisone.
 

sunshine44

Que sera sera
Messages
1,189
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.
Really interesting. Thanks for this info! I have a Healy scalar device and when I scan myself in severe adrenal etc crashes, I always notice it says I need vitamin c and chromium like routinely. I was curious about this.

It’s a fairly accurate scan I’ve found past 3 years as it found ebv, specific strains of Lyme prior to bloodwork and even found my daughters progesterone deficiency a year before saliva and urine testing did.

Anyways, going to look at his book.
 

sunshine44

Que sera sera
Messages
1,189
May I encourage everyone to push for MRI tests for Cortisol and ACTH. Don't give up.

I was diagnosed with low cortisol at age 30 after my symptoms had been overlooked for years. In 2007, a top endocrinologist diagnosed me with Addison's disease and recommended an MRI, which eventually revealed a Chiari malformation. Initially, I was prescribed 10 mg of cortisone for about two years. As my cortisol levels began to stabilize around 6.5, I was able to reduce to a 5 mg maintenance dose. Currently, I am on a daily dose of 20 mg of hydrocortisone.
Thank you! This information is greatly beneficial. I will inquire if they can do this at same time of my (hopeful) mri with neurologist later in July at Cleveland clinic.
 
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