In the last year my son has suffered severe fatigue with syncope, he has had episodes of a low heart of around 40, and he has been implanted with a loop recorder to catch any abnormal arrythmias. up till now nothing has been recorded except for his bradycardia.
His cardiologist recently requested he should have a full endocrinological work up..... everything came back normal except for vit D deficiency  and a low 24 hour cortisol urine test. 17nmol/24hr.. We are now waiting for an appointment for a ACTH test.
I have researched the internet, and Addisons disease pops up.....Of all the symptoms stated, he suffers only extreme fatigue + occasional generalised abdominal pain/disturbances . Does this correspond with addisons disease?? He had his appendix out 4 weeks ago without a problem... thanks for any input...
In any of the tests that he has had - have they tested sodium and/or potassium? In adrenal issues typically sodium and potassium are off - usually sodium is low and K is high but it can be low (mine gets low).
One single urine test is not diagnostic - he needs more blood work - such as ACTH, dhea, renin, aldosterone, adrenal antibodies and cortisol testing for adrenal, for instance. ACTH and renin are fussy, often done wrong tests. Time of testing and lab error are factors in endocrine testing (keeps many from getting diagnosed promptly!).
Was the urine jug kept cold the entire time? Does he crave salt? Is he tan at all? It could be so many things including other hormones - POTS or auto-immune. Did they test all the pituitary hormones? Did you get a copy of all the tests? Any imaging done?
Thanks for you reply, this has been a little bit of a shock for us, we have always thought his problem was cardiac but as his cardiac rhythm is normal but very slow, the cardio wanted to look for another possible underlying problem. Hence the endocrin work up.. His BP is low but I assume because his HR is slow..
He had has many blood tests, never have they said there was sod/pot problem. He is scheduled friday to have all the above mentioned tests.
Urine was kept in a room around 15 deg..No cravings for salt.. No Tan...He had a brain scan last june, no abnormality.
This morning [5pm now] he took a turn for the worse, his pluse was around 40, bad headache slightly confused, slept utill 1pm... although he felt a little better.. He complains of pain in his legs, weak hands/grip unable to lift anything heavy.. If this continues I am going to bring him to the ER..
His serum cortisol was 170 ug/l 62-194 ug/l at 0830
free cortisol 6 ug/24hr 20-50 ug/24hr
17 nmol/24hr 55-138 nmol/24hr
The urine should have been kept in a cooler or fridge. They *say* it is ok as it has preservative, but as someone who has done the test over 20 years (ack!) I can tell you that keeping it cold leads to a more accurate reading. The test could be low simply for bacteria or lab error. Been there, done that.
The crux of addison's is that when someone is sick etc. sodium is low or on the lower side. So it pays to get copies of everything to know. The person cannot hold sodium and thus goes into crisis and BP and pulse are low due to low sodium. I take boatloads of sodium to keep my BP and pulse up and a medication to keep my sodium in my body. Addison's is a salt wasting disease. I take florinef. Renin and aldosterone can impact blood pressure - but that would impact, I would think, potassium and sodium.
The serum cortisol was normal. Frees are low - they should test cortisol binding globulin.
If his BP is that low, it would be awful! I hope they can figure it out soon!
It can be mis-diagnosed as fibro due to the pain. Low cortisol is another disease entirely and if you have labs showing low cortisol, low sodium etc., then I would recommend that you find a competent endocrinologist for a work up.
Low cortisol can be a life-threatening disease and needs to be diagnosed properly.
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