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lost...if not adrenal, what is this? Adrenal Insufficiency crisis?

My son was very sick before he was diagnosed with Type 1 Diabetes - he had extreme back pain (near where the kidneys are but his kidneys are okay), he had a severe inability to handle stressors and would feel like he was going to faint when in stressful situations.  We had a stressful school situation and, even though he had then been diagnosed with type 1, his blood sugar was going low, low, low with no insulin.  We didn't know what it was but it came around every time he got upset and he had no ability to handle any stressors (he would scream and cry when he was dropped off at the wrong bus stop, for example, he was 9 and this was not typical of his personality before the back pain, feeling faint with stress and low blood sugar when stressed).  The school situation got better, he began to heal.  Fast forward a few years... he again was experiencing stress in school, back pain came back.  I got a doc to do an adrenal test after he failed (miserably) two mail order saliva lab cortisol tests (4 x's per day - 2x's per day he had extreme low cortisol).  The problem came, because this was a very expensive test - the nurse did not follow the directions and spin the sample and put it on ice immediately - she left it at room temp for 45 minutes.  Our one chance to find out what was wrong with him was wasted.  He had had a blood cortisol test and the results appeared to be 'average' however, he was screaming and crying as they took the blood so, again, was that average cortisol the number it should have been given his extreme upset?

Now he is working, and under stress at work.  He has had several times where he feels like he is going to faint, his back hurts him (just above the kidney area, when he feels this way.  He says he feels like he is going to die.  I cannot get the hospital to do a cortisol test on him... he is not tanned, that is why they refuse (he does not have hyperpigmentation other than dark lines that come out of the corners of his eyes. He was nauseous but did not throw up.  Back when he was very sick when he was younger, he had this one tanned looking spot on his leg, it lasted for over one year and then faded when he started to feel better.  He also had dark lines coming from the corners of his eyes, those went away after the school situation improved and his other symptoms went away).  

He has a low diastolic blood pressure and the range between the systolic and diastolic is a large number (it was 125/53 in the emergency room on Saturday).  They are not concerned.

I have taken him to the er two times in the past two weeks with no help. This most recent time, with the same/similar symptoms happened a few days after he had a moped accident.  He didn't get physically hurt (a few scrapes, was wearing a helmet, had a passenger on the moped and he, too, did not get more than a few scrapes - the accident was upsetting to him as he got so scared by it that he sold the moped.  - This led up to him experiencing the same/similar symptoms that he had previously when he had an extremely stressful school situation (that situation was so overwhelming that we had to move to another district).  This most recent trauma led to him  feeling like he was dying a few days after the accident.    He had a very warm color to him, when he went in there and he is naturally very pale.  The color did dissipate by the time we left there.  Again, the diastolic number was low.  He had an irregular ekg, they took another one and it was normal so they threw away the irregular one.  The second time I took him to the er, last night, he awakened at 3:00a.m. and was violently shaking.  He could barely speak anything but he managed to indicate 'why I am shaking, I can't stop, what is wrong with me' - in a barely audible way.  He said that it took extreme effort to come to me (I was sleeping) to tell me something is wrong.  He told me that he experienced this same thing before he was diagnosed with Type 1 and his eyes were going different directions and he could not see right.

His shaking lasted 45 minutes.  I called an ambulance because he couldn't walk.  The ambulance took an hour to get to us.  By the time it arrived, he was shaking subtly, not violently.  He still felt very very sick.   They won't check his cortisol.  He gets dark lines emanating from the corners of his eyes.  

If this is not an adrenal issue what else can it be?  What can I do to help him.  He feels awful most of the time now... there are times where he cannot stand or walk, he feels dizzy, nauseous, like he is going to die.  He feels like he will faint.  He barely is speaking, just a word here and a word there.  He has lost weight..  While he was in the emergency room, he had stabbing pains in his legs.  He also has confusion.  He is highly intelligent and does not do any drugs whatsoever.  When he is not feeling incredibly sick, he says he feels like he cannot move or get himself to move.  He just sits in a chair.  We are a good family that cares so much for our son.  We don't do drugs, drink or smoke.  Our son has been a straight A student.
3 Responses
Avatar universal
An adrenal crisis is a life threatening situation that results in death without  exogenous steroids because the body cannot maintain homeostasis.  One does not just recover and feel better on their own.
Avatar universal
Thank you for the info... do you know of any other issues, other than adrenal (not a crisis, but insufficiency) that could cause such symptoms?

Avatar universal
Low cortisol would be marked by abnormal potassium and sodium readings.

There could be issues with say, minerals like magnesium, calcium (tetany), or or others... but not being a doc cannot really guess.

I do hope you find the right doctor for him - perhaps a rheumy - that will get to the bottom of this.
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