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Is it adrenal fatigue?

maryb

iherb code TAK122
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3,602
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UK
I had a very stressful message this morning - I immediately got these overwhelming symptoms, felt really weak and my legs went to jelly. Anyone recognise these symptoms? This morning prior to this I was okay - my usual ME self. (eg.trying to make my own rice milk slowly and badly)

I should say my very caring family protect me from as much stress as they possibly can,so I don't get a lot of real world stressing stuff.


A few years ago I was told my adrenals were flat-lining,I was recommended Cortef, which I declined.
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
Even healthy people can feel the way you describe during or after a stressful situation. But the only way to know how your adrenals are functioning is to test them. A saliva test is best but an AM cortisol draw can also be useful. If these are both low, I would also consider an ACTH stimulation test to test the dynamic function of your adrenals.

It is unusual for adrenals to just suddenly perk back up without any intervention though so I would definitely pursue further testing. It's also somewhat unusual to be prescribed hydrocortisone rather than a raft of expensive supplements so I also take that as a sign of extremely poor results on the saliva test you took in the past.

I would not be afraid to use cortisol to replace what is missing in your body after proper testing. Cortisol is a vital hormone. One cannot recover from illness without it.

Ema
 

maryb

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UK
Thanks Ema - I got scared off Cortef after reading so many scary stories about it - I often wonder what if I'd tried it, wish I had?
Maybe another round of adrenal testing is in order.

This morning I just thought - dear god if I can't cope with this how on earth am I ever going to get better
 

golden

Senior Member
Messages
1,831
Maryb,

I am just learning about this - so please bear this in mind...

I dont have your symptoms but I am suspecting in myself Adrenal Fatigue.

Here is why. (and anyone feel free to update my knowledge) :

http://www.drrind.com/therapies/metabolic-symptoms-matrix

I also get a drop in blood pressure when i stand and in fact an up and down figure standing for 10 minutes. I havent checked it for ages though.

I plan on getting the Comprehensive Adrenal Test done through ThyroidUK and the Geneva lab.
 

caledonia

Senior Member
On an AM cortisol my adrenals look fine. On 4 point adrenal saliva test, I'm flat-lined on all 4 points (and have been for many years). I don't do that well with stress. I had doctor warn me about how dangerous this was, how it was among the 4 worst profiles they had ever seen, blah blah blah.

I've tried all kinds of adrenal supps and don't tolerate any of them, even in extremely tiny amounts - they're all too overstimulating. I would be scared to death to try Cortef. I was prescribed something like that (can't remember the actual name) but didn't take it either.

So for many years, I supported my adrenals by doing homemade electrolyte drinks. That would be salt, vit. C, and magnesium for me. Others might also need potassium or other substances. The adrenals regulate electrolyte imbalance, so if you have poor adrenals, you'll be losing these electrolytes like crazy. The drink will make you feel a lot better.

Fast forward to a month ago. I've been working on methylation. Within a few months my thyroid (formerly hypothyroid), went hyperthyroid and I had to discontinue my medication. During the same time, my need for the electrolyte drink was reduced in half. So the methylation is really helping my thyroid and adrenals. I should be able to get full recovery of the adrenals, and ditch the electrolyte drink eventually, but I need to continue to go very slow with methylation.

One point about adrenal fatigue - I think for many of us, we have "apparent" adrenal fatigue, not actual adrenal fatigue. Our brand of adrenal fatigue is caused by loss of signaling to the thyroid and adrenals by the hypothalmus and pituitary, not by any actual failure on the parts of these organs. The loss of signaling is caused by glutathione depletion.

So you restore methylation, build up glutathione, and voila, your thyroid and adrenals start working again. Rich Van Konynenburg talked about this.

This would also explain why we don't tolerate adrenal glandulars, as our adrenals are not actually fatigued. It will look the same either way on an adrenal saliva test, so it's misleading.

Hmmm, it just occurred to me that may also explain why your adrenals would look fine on an AM cortisol, while looking terrible on an adrenal saliva test, and maybe that's a way to tell which kind you have...just speculating here.
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
Maryb, at one time I could tolerate cortef and it got me through a rough patch. However, now it doesn't work for me. The good news, if you go on it and it doesn't help or makes you worse, stop it.

I have the same symptoms you do after a stressful situation. I had a huge day on Sunday and I have been like what you are describing ever since.

Caledonia's electrolyte formula can help to. Salt and Vitamin C can boost the tired and overworked adrenals.
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
On an AM cortisol my adrenals look fine.

This may not apply at all to you caledonia, but the range for an AM cortisol is insane and includes levels so low that they are diagnostic of adrenal insufficiency on their own even without a stimulation test. A healthy person will have an AM cortisol of at least 20 and will double upon stimulation. I am still waiting to see someone with ME/CFS with an AM cortisol of 20+. I'm sure someone exists but I haven't found that person!

Most doctors (even endocrinologists which is appalling; don't they read their own studies??) will consider ANY reading on an AM cortisol, even one that signifies that you are almost dead, as "normal" thanks to these overly wide ranges. And then woe is you if you manage to stim from a 4 to an 8...you've doubled so you must be "fine"!

I've tried all kinds of adrenal supps and don't tolerate any of them, even in extremely tiny amounts - they're all too overstimulating. I would be scared to death to try Cortef. I was prescribed something like that (can't remember the actual name) but didn't take it either.

This is very typical of someone with an overreactive HPA axis caused by low cortisol. When you take in small amounts of steroids, you can also suppress some of your own function (which is reversible and normal). But you can end up suppressing more than you are replacing and this feels AWFUL. Adrenaline rushes and the like can be nonstop with panic and anxiety attacks to boot. The way to fix this is to take a full replacement dose of steroid. Sometimes people also need longer acting steroids at first to help keep from feeling the ups and downs of hydrocortisone. All this is normal and predictable but so poorly understood. I've only met a few doctors that prescribe steroids properly especially to our population which generally has a brain problem rather than an adrenal problem.

One point about adrenal fatigue - I think for many of us, we have "apparent" adrenal fatigue, not actual adrenal fatigue. Our brand of adrenal fatigue is caused by loss of signaling to the thyroid and adrenals by the hypothalmus and pituitary, not by any actual failure on the parts of these organs. The loss of signaling is caused by glutathione depletion.

Maybe. It might also be caused by infection. Lyme in particular is known to dysregulate the HPA axis.

I think we should all make a concerted effort to stop using the term "adrenal fatigue". It's meaningless and brings up connotations of quacks. One has adrenal insufficiency if the adrenals are not producing enough cortisol, regardless of the reason why. If it is an autoimmune attack on the adrenals or some other issue, that is called Addison's disease. If it is due to faulty signaling from the brain, that is HPA axis dysfunction. The adrenals don't fatigue. It's a misnomer and it is so hated by the conventional medical establishment that it keeps people from getting the treatment they deserve (does this scenario sound familiar to anyone??).

So you restore methylation, build up glutathione, and voila, your thyroid and adrenals start working again. Rich Van Konynenburg talked about this.

Maybe. My methylation was restored (by Rich's take on my methylation panel) long before my adrenal function came back. I'm not saying that this won't work ever but it might be a long time to go without proper hormone levels for some people who are very low in cortisol.

This would also explain why we don't tolerate adrenal glandulars, as our adrenals are not actually fatigued. It will look the same either way on an adrenal saliva test, so it's misleading.

The reason many people don't tolerate adrenal glandulars is because they contain the whole gland which also includes adrenaline. For people with low cortisol and hyperreactive HPA axis, this is usually a disaster. The last thing needed is any more adrenaline.

People with HPA axis dysregulation often have flatlined saliva tests as well so I'm not sure how that is misleading? It's impossible to determine primary from secondary AI from either saliva or AM cortisol tests. One needs dynamic testing like a stim test and even that is not a sure thing. A stim test will miss about 50% of those with secondary AI. That makes the skill of the clinician even more vital in interpreting the tests along with the symptoms.

Ema
 

heapsreal

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Messages
10,089
Location
australia (brisbane)
Thanks Ema - I got scared off Cortef after reading so many scary stories about it - I often wonder what if I'd tried it, wish I had?
Maybe another round of adrenal testing is in order.

This morning I just thought - dear god if I can't cope with this how on earth am I ever going to get better
Could try small doses of pregnenolone cream like 5mg and slowly build it up. Alternative to hc. But many people seem to get abit to hyped up when they start treating adrenals. Possibly its a thyroid dump. But google around?
 

triffid113

Day of the Square Peg
Messages
831
Location
Michigan
On an AM cortisol my adrenals look fine. On 4 point adrenal saliva test, I'm flat-lined on all 4 points (and have been for many years). I don't do that well with stress. I had doctor warn me about how dangerous this was, how it was among the 4 worst profiles they had ever seen, blah blah blah.

I've tried all kinds of adrenal supps and don't tolerate any of them, even in extremely tiny amounts - they're all too overstimulating. I would be scared to death to try Cortef. I was prescribed something like that (can't remember the actual name) but didn't take it either.

So for many years, I supported my adrenals by doing homemade electrolyte drinks. That would be salt, vit. C, and magnesium for me. Others might also need potassium or other substances. The adrenals regulate electrolyte imbalance, so if you have poor adrenals, you'll be losing these electrolytes like crazy. The drink will make you feel a lot better.

Fast forward to a month ago. I've been working on methylation. Within a few months my thyroid (formerly hypothyroid), went hyperthyroid and I had to discontinue my medication. During the same time, my need for the electrolyte drink was reduced in half. So the methylation is really helping my thyroid and adrenals. I should be able to get full recovery of the adrenals, and ditch the electrolyte drink eventually, but I need to continue to go very slow with methylation.

One point about adrenal fatigue - I think for many of us, we have "apparent" adrenal fatigue, not actual adrenal fatigue. Our brand of adrenal fatigue is caused by loss of signaling to the thyroid and adrenals by the hypothalmus and pituitary, not by any actual failure on the parts of these organs. The loss of signaling is caused by glutathione depletion.

So you restore methylation, build up glutathione, and voila, your thyroid and adrenals start working again. Rich Van Konynenburg talked about this.

This would also explain why we don't tolerate adrenal glandulars, as our adrenals are not actually fatigued. It will look the same either way on an adrenal saliva test, so it's misleading.

Hmmm, it just occurred to me that may also explain why your adrenals would look fine on an AM cortisol, while looking terrible on an adrenal saliva test, and maybe that's a way to tell which kind you have...just speculating here.
I though glutathione was only an antioxidant. I did not know it was involved in signalling? Thanks for the tip.

My adrenals do go out during allergy season and I need no test to prove this - my blood pressure which is genetically high goes low and I actually will pass out if I don't eat salt. So...you can look at your blood pressure, if you have blood pressure issues, to do an easy self diagnosis.

Other adrenal issues though involve DHEA. Everyone's DHEA, put out by the adrenal gland, peaks at age 30. So here is another thing to observe -- the amount of stress you can tolerate is dependent on how much DHEA you've got. There is a cortisol to DHEA ratio and in young people it's either 10 to 1 or 1 to 10 (sorry I don't actually know which way it goes!). However you can observe this...when you were 20 you could prolly drink a lot of coffee w/o getting he shakes...I personally used to drink 20 cups a day as I used caffeiene to keep functioning while anemic. 2 cups of coffee raise cortisol 33% so coffee is like liquid stress. After 50, I could barely and not always tolerate even 1 cup of coffee / day. After I supplemented DHEA I could reliably tolerate 3 cups and usually as many as I wanted - so maybe 7. Your ability to handle stress is a function of your DHEA level, and your adrenal is not considered fatigued because your DHEA level is low, it is simply considered old.
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
Thanks everyone for your replies - really appreciated.
heapsreal
thanks heaps - is pregnenolone cream lower in cortisol than Cortef? I suppose its trial and error with the dose?

golden - the last adrenal test I had was done by Genova way back in 2008!! I can't believe it was that long ago, my total was 14 - range 21-41- the only one in range was the 4th one (prior to sleep) I have been on a lot of Vit C since but I will get another test done now.

caledonia
I'm sure the methylation programme would help me but just in the process of getting rid of my mercury fillings, but yes you worked it out for yourself - thats the hard part isn't it?

The Spitfire
Its awful isn't it?I seem to have settled down now - just left with a bad headache - I don't know whether you can tolerate supplements but I was under a really good doc when I had my last test which showed low adrenal function - he prescribed a tincture of liquorice and ginseng - I couldn't tolerate it though.
 

heapsreal

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australia (brisbane)
Pregnenolone is higher up the stream then the othef hormones. So it filters down stream topping up other hormones and seems to have a preferance for cortisol in many. Also on its own helps energy. Memory and other gocnitive issues. Start low eg 5mg of cream. Can buy low doses from iherb.maybe add smalldoses dhea later on eg 5mg and slowly build it up.
 

soxfan

Senior Member
Messages
995
Location
North Carolina
I have been dealing with adrenal issues for years. My saliva cortisol is flat lined all day but my ACTH STIM test came out fine. On the morning of that test my am blood cortisol was 8 but did double to 16 so they told me my adrenals can work under stress.
I had been on cortef for years and it really never seemed to help so I eventually discontinued it. I don't believe I have actual adrenal fatigue even though my tests look bad.
I can't handle stress at all and it is difficult to handle my emotions. I have adrenaline surges at night which can keep me up the entire time. Even on cortef I had these same issues...that didn't change.

In my opinion unless you have true Addison's disease then we shouldn't be taking cortef. It took me a year to wean off it and it was not pleasant. I think many of us do have HPA dysfunction and that is probably why our cortisol testing is out of whack.
I just had mine done again for the 3rd time and in 9 years it is almost always the same results...flat during the day and normal at night....I want to mention I am also hypothyroid.
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
I have been dealing with adrenal issues for years. My saliva cortisol is flat lined all day but my ACTH STIM test came out fine. On the morning of that test my am blood cortisol was 8 but did double to 16 so they told me my adrenals can work under stress.
I had been on cortef for years and it really never seemed to help so I eventually discontinued it. I don't believe I have actual adrenal fatigue even though my tests look bad.
I can't handle stress at all and it is difficult to handle my emotions. I have adrenaline surges at night which can keep me up the entire time. Even on cortef I had these same issues...that didn't change.

In my opinion unless you have true Addison's disease then we shouldn't be taking cortef. It took me a year to wean off it and it was not pleasant. I think many of us do have HPA dysfunction and that is probably why our cortisol testing is out of whack.
I just had mine done again for the 3rd time and in 9 years it is almost always the same results...flat during the day and normal at night....I want to mention I am also hypothyroid.
Below 6 is indicative of Addison's all by itself...8 is not far off that. And 16 is less than where a healthy person should start. Like I wrote above, a healthy person will start at 20ish and double. I would seriously consider finding a doctor that understands the testing better. No one could feel good with levels like that specifically if you are also trying to take thyroid meds too.

It's a double whammy if you also have infections because you must have adequate cortisol to fight infections. Otherwise they linger and become even harder to eradicate.

I truly believe that most doctors see adrenal insufficiency so rarely that all they remember is the one page of the textbook that deals with this condition. But it is so worth finding a doctor that gets it even if you have to travel. Cortisol replacement was the first step towards crawling out of my hole and has made a huge difference for me.

Ema
 

soxfan

Senior Member
Messages
995
Location
North Carolina
I was on cortef for almost 4 years..20 mg daily and it really made no difference in how I felt. They monitored my cortisol for a year and it could range in the am anywhere from 8 all the way up to 24 . This was during the time I was weaning off. I just had blood cortisol done 2 weeks ago and will find out the results next week at the doctor appt. my doctor is very knowledgeable about the adrenals etc...as she herself suffers from chronic EBV.

My adrenals have no problem producing cortisol under stress.if my blood level is low next week then I am sure we will have a discussion about cortef.

I wanted to add that I also have osteopenia so I have to balance that fact with the whole cortef issue.
 

caledonia

Senior Member
I found my old labs -
Cortisol, total, serum - 10.4 mcg/dl
Reference range
Cortisol AM - 4.0-22.0 mcg/dl
Cortisol PM - 3.0-17.0 mcg/dl

So yeah, not anywhere near 20.

When I was going through horrible Zoloft withdrawal, my (saliva) cortisol was 5 times higher than normal - shooting off the top of the graph! So my adrenals do respond to stress also.

I tried over several years time: adrenal cortex extract, DHEA, 7 keto DHEA, some kind of homeopathic thing for adrenals, a liquid adrenal cortex extract, pregnenolone, I think something else I'm forgetting, etc. etc. - all too overstimulating.
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
I was on cortef for almost 4 years..20 mg daily and it really made no difference in how I felt. They monitored my cortisol for a year and it could range in the am anywhere from 8 all the way up to 24 . This was during the time I was weaning off. I just had blood cortisol done 2 weeks ago and will find out the results next week at the doctor appt.

You've just touched on one of the biggest problems with cortisol testing...It's absolutely worthless as a measure of treatment because the levels will fluctuate depending on when you took your last dose and the interaction of the feedback mechanism of the HPA axis and your own cortisol production. Once you are on steroids, expert doctors will monitor your dose mostly by symptoms and other signs such as blood pressure and electrolyte labs. Occasionally, there will be a reason to do an AM cortisol (mostly if you start to see signs of overreplacement indicating that the HPA axis may be coming back online) but never to titrate the hydrocortisone dose. I know of one doctor who says that he has developed a range to use to see if the dose is correct with saliva testing while on HC but I have not had any personal experience. In my experience, it is rare to have a doctor that knows how to interpret saliva tests much less saliva tests while on steroids unfortunately.

It's unfortunate that you took Cortef for 4 years and didn't feel any benefit! I would suggest that it might be possible that the dose was too low. The body naturally produces 40-50 mg of cortisol a day. Studies done on Addison's patients indicate that most of them feel pants on 20 mg/day and are mostly bedbound. Most of the women I know with AI take a minimum of 25 mg/day and men anywhere from 30-40 mg to lead a full active healthy life.

Dividing the dose to take on a more physiological rhythm (ie the biggest dose in the AM) also seems to make a big difference for people and this has also been proven out by studies.

I wanted to add that I also have osteopenia so I have to balance that fact with the whole cortef issue.

The good news is that having physiologically appropriate levels of cortisol in the body doesn't increase your risks for osteopenia. If that were true, then everyone would develop it because everyone makes and depends on cortisol for survival. The risks for osteopenia are increased at pharmacological doses which are much larger than should ever be used for AI (upwards of 50 mg HC/day).

The biggest risks for osteopenia/porosis in my opinion are low vitamin cofactors such as Vit D, Vit K2 and magnesium. For men especially, low testosterone can also be an important risk factor. I would worry about all of these much more than a physiological replacement dose of HC.

Ema
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
My doctor mentioned that he preferred the am serum cortisol to be around 14...that is just his preference.
Yikes! Even Wikipedia notes that a normal AM cortisol level is 20-30 ug/dl. I would hate to have a doctor that preferred to keep me ill rather than properly replaced.

Ema
 

soxfan

Senior Member
Messages
995
Location
North Carolina
I have been with my doctor for 7 years and he definitely is not keeping me ill. If he thought for a second I should be on cortef then I would be. I have had the very best testing over the years at some top rate hospitals and inspite of what my saliva testing says all the other tests show my adrenals can produce cortisol normally.
I already have osteopenia and don't want it to develope into anything more by taking steroids. Unless my am serum cortisol was extremely low then I definately won't be going back to cortef.
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
I already have osteopenia and don't want it to develope into anything more by taking steroids. Unless my am serum cortisol was extremely low then I definately won't be going back to cortef.

If you are satisfied that is all that matters! I am just saying that an AM cortisol of 14 would not be considered optimal by any stretch for me or for my doctors. Especially for anyone dealing with an infection of any kind.

I'm sure you already know this but osteopenia can also be caused by too low cortisol as well as by taking pharmacological doses of steroid. The only state that doesn't contribute to osteopenia is appropriate cortisol levels whether gotten naturally or by taking physiological doses of steroid.

Ema