Adrenal Insufficiency Support Group

I'd like to make a thread on cortisol-low symptoms which I will then post to a sticky. It will be very helpful for newbies as well as those of us who have been around this a while. So please feel free to add to this. I'm going to get started here with the obvious:

Fatigue - unrelenting, life-compromising, fatigue.

Muscle stiffness and achiness - especially in the large muscles like quads or biceps.

Weakness - In my case, so weak I had trouble balancing myself when walking and I hung onto walls a great deal.

I'll leave some for the rest of you to name!

Deb

Anyone else get orange peel-like skin on their face when they are running low?

Deb

No, but I get the chills, GI upset, nausea. And yes, fatigue that knows no end - I can not stay awake.

Hey Newbies,

My symptoms would be nausea, fatigue as Deb described, hypoglycemia (pretty severe 30-50 blood glucose range), diarrhea, rarely vomiting, weight loss (unintended but always welcome! LOL) and muscle pain/weakness.

My symptoms were heart palpitations, chest pain, nausea, diarrhea, extreme dizziness, vertigo, low BP and high BP ( the low BP would cause syncope and near syncope, hypoglycemia, excessive sweating and thirst, extreme weakness (sometimes I would feel paralysed because of how weak I was) joint, muscle and bone pain(I hurt all over)and fatigue. Numbness and tingling that felt like some days I was having a stroke.I am sure I missed a few, but those were my main complaints.

Turns out it was not all anxiety like my GP insisted it was. My pituitary does not make ACTH like it should.

Hi Joy,

Wow reading your list of symptoms reminds me - yup I had every one of those. The high/low blood pressure was really puzzling to the docs but on this site Bob explained to me that it was a reaction to the stress my arteries were going through - they were constricting in response to the cortisol lows. The other thing that was happening is that my adrenals were pumping out adrenaline to make up for the cortisol shortage.. That alone can cause changes in bp and heart rate, palpitations, etc. Add to that the problem with glycolosis that results from the hypoglycemia (and other hormonal changes if the problem is the pituitary) and it makes you a pretty sick puppy. I am glad you have your diagnosis. Things will begin to get better once you get on top of dosing!

Deb

Jojy,

The go-to "diagnosis" is often anxiety, which can be really frustrating. I'm working hard to not take it personally when I go back through my medical records and see that word. It can agree that it's a term used to describe a state, but it is NOT a diagnosis for me. My first ER visit, the ER doc wrote down "anxiety", which may be why they tried treating me with anxiolytics for the first few hours.....it *wasn't* "anxiety"!!! I was experiencing repeated episodes where I would be extremely dizzy followed by my eyeball being ripped into the back of my head (along with uncontrollable screaming from the agony). It went on for hours, with my family begging the docs to try something new because nothing was stopping the spells (and, in fact, they became more frequent). Anyway, that's a rant......but the point being that I have often seen "anxiety" in my records when, in fact, I WAS anxious but *because* of what was going on, not the *cause* of what was going on. Very frustrating.

Also, just a btdt on the tingling/numbness. One time last year, I became shaky and dizzy, and then had the numbness/tingling. My doc's office said to go to Medcheck, so a friend drove me. They wouldn't take me! They told me to go straight to the ER.....I think *they* were concerned, because of the numbness and tingling, that I was having a heart attack. So it's not only us being "paranoid". I now feel less worried about it since I've "lived through it" and now know that, for me, those spells are not heart attacks, but don't feel bad for thinking it when you don't know what's going on. Hopefully, hearing that others experience similar symptoms and that it's related to this, er, stuff and not (most likely) related to a heart attack or stroke will help you feel less stressed when you DO experience it.

OK - Just what does cause the tingling in the hands - anyone know?

Hey Becky

For AI people I'd be pretty sure its a shift in the nerve electrolyte balance. ie water, K, Na, Ca etc. Nerves are basically ion pipes that propagate an electric charge. If the path resistance or delay changes, the brain gets confused comparing it to the usual signals and it manifests as strange sensations. The hands are amongst the more sensitive nerve locations too.

Same kind of logic as cardiac electrical issues with hyperkalemia under PAI.

These shifts of course can still be within blood ref ranges, so its not easy to pin down what ion has a problem. I can even perceive it with changes in stress dose levels and the mix percentage of Dex vs HC. In my case the mineralocorticoid change has given me a decrease in skin sensitivity for example. Its all kind of less important though than the energy/gluco side!

If the tingling is irritating and persistent I'd try playing with mineral supplements, salt and water.

Bob

Yes pre-dx I also had the tingling, hands and feet. I used to think I was getting MS. And as far as anxiety, well when you are running cortisol low and adrenaline kicks in that looks to the rest of the world like anxiety. Christmas Day I had ten guests, I was severely ill and had been in the ER at 4 am for an asthma treatment because I couldn't breathe. I was trying to cook turkey mushroom roulade and the works - appetizers - the whole thing - with about seven people standing around my tiny kitchen (in my way thanks very much) and all of them saying, "Why are you so stressed? Your face is red. Calm down!" I wanted to run screaming from the place. Family still doesn't get it that I have this adrenaline reaction when I'm sick or running cortisol low. They never will get it I'm afraid. You have to live it to understand. All I could do was say, "I am calm. I am calm. QUIT TELLING ME I AM NOT CALM! (Screaming now)"

Deb