OI, Dysautonomia

[kangaSue]

When you say "everything tests OK for response to cortisol" I'm not sure what you mean. An ACTH tolerance test?

Yeah, an ACTH stimulation test. My bp dropped in reaction to the synacthen injection too which the Technician doing the test said was unusual but the test itself came back as a normal result.

 

[JaimeS]

Yeah, an ACTH stimulation test. My bp dropped in reaction to the synacthen injection too which the Technician doing the test said was unusual but the test itself came back as a normal result.

I'm not sure precisely what was unusual about my ACTH-stim on paper. My doctor said she "didn't like the look of it" and that while I showed response "the ratios" were all wrong. Phenomenologically, I had what you describe: drop in BP, drop in body temp (started shaking), drop in O2, confusion... a shock response. You might have had the same to a far more minor degree if you had a BP drop.

I eventually had an insulin tolerance test (ITT) -- not glucose tolerance, for which it's often confused. It was this test that revealed dysfunction most clearly.

 

[kangaSue]

I'm not sure precisely what was unusual about my ACTH-stim on paper. My doctor said she "didn't like the look of it" and that while I showed response "the ratios" were all wrong. Phenomenologically, I had what you describe: drop in BP, drop in body temp (started shaking), drop in O2, confusion... a shock response. You might have had the same to a far more minor degree if you had a BP drop.

Hmm, that's interesting. I have a problem being cold in air-conditioned places as it is (because of having Autonomic neuropathy) but once the stim was injected, I got the trembles too and was given a couple of blankets to take the chill off. My temperature wasn't monitored at the time as far as I can recall.

I eventually had an insulin tolerance test (ITT) -- not glucose tolerance, for which it's often confused. It was this test that revealed dysfunction most clearly.

Thanks for this and I'll have to look into this test too as I see it's also a test for secondary adrenal insufficiency, which is something that can be caused by having a narrowed left renal vein (renal Nutcracker Syndrome), and mine is totally occluded.

My cortisol and aldosterone are "within range" but lowish in the a.m. while renin is elevated and renin and the whole RAAS system does have influence where insulin resistance is concerned.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3551270/

 

[JaimeS]

but once the stim was injected, I got the trembles too and was given a couple of blankets to take the chill off.

I actually had a second ACTH stim, but that time they started with the assumption I'd go into shock and treated me like I already was. They burritoed me in three blankets, elevated my feet, and gave me water and electrolytes to drink. Still uncomfortable, but definitively not as bad.

My cortisol was within range, too, which made me rather surprised when they tried to prescribe it after ITT. I seemed to be putting out what was approximately the right amount of cortisol on a day-to-day basis, but I didn't respond to low-blood-sugar stress by producing more, was the thing. My cortisol dropped over the time of the test.

Perhaps needless to say, but taking hydrocortisone produced the same symptoms as the ACTH. Maybe a little worse. Breathlessness and dramatically increased autonomic issues.

I see it's also a test for secondary adrenal insufficiency, which is something that can be caused by having a narrowed left renal vein (renal Nutcracker Syndrome), and mine is totally occluded.

That. Is. So. WEIRD.

I was just researching this! Somehow I got from ME to that. I might have a few links saved. That's fascinating!

 

[kangaSue]

That. Is. So. WEIRD.

I was just researching this! Somehow I got from ME to that. I might have a few links saved. That's fascinating!

I've actually come across a handful of people who were originally diagnosed with ME/CFS only to find sometime down the track (and often many years later) that they were further diagnosed with Nutcracker Syndrome (NCS) too and treating the narrowed vein resolved their chronic fatigue and other autonomic symptoms as well (POTS in several cases) .
There's still no good research papers in the literature to explain why or how the autonomic dysfunction comes about with NCS (including GI dysfunction, which is substantial in a small number of cases) but a kidney transplant specialist (who does kidney autotransplants to fix NCS) in the USA whom I have corresponded with suggests much of it is to do with increased venous pressures into both the kidney and left adrenal gland affecting regulation of the various hormones that these organs produce.

 

[iwillwin1day]

What about fludrocortisone? It is so helpful for my OI.

 

[oision27]

I've actually come across a handful of people who were originally diagnosed with ME/CFS only to find sometime down the track (and often many years later) that they were further diagnosed with Nutcracker Syndrome (NCS) too and treating the narrowed vein resolved their chronic fatigue and other autonomic symptoms as well (POTS in several cases) .
There's still no good research papers in the literature to explain why or how the autonomic dysfunction comes about with NCS (including GI dysfunction, which is substantial in a small number of cases) but a kidney transplant specialist (who does kidney autotransplants to fix NCS) in the USA whom I have corresponded with suggests much of it is to do with increased venous pressures into both the kidney and left adrenal gland affecting regulation of the various hormones that these organs produce.

give this a read

 

[oision27]

I actually had a second ACTH stim, but that time they started with the assumption I'd go into shock and treated me like I already was. They burritoed me in three blankets, elevated my feet, and gave me water and electrolytes to drink. Still uncomfortable, but definitively not as bad.

My cortisol was within range, too, which made me rather surprised when they tried to prescribe it after ITT. I seemed to be putting out what was approximately the right amount of cortisol on a day-to-day basis, but I didn't respond to low-blood-sugar stress by producing more, was the thing. My cortisol dropped over the time of the test.

Perhaps needless to say, but taking hydrocortisone produced the same symptoms as the ACTH. Maybe a little worse. Breathlessness and dramatically increased autonomic issues.



That. Is. So. WEIRD.

I was just researching this! Somehow I got from ME to that. I might have a few links saved. That's fascinating!

This might explain your reaction.

 

[oision27]

Hmm, that's interesting. I have a problem being cold in air-conditioned places as it is (because of having Autonomic neuropathy) but once the stim was injected, I got the trembles too and was given a couple of blankets to take the chill off. My temperature wasn't monitored at the time as far as I can recall.

Thanks for this and I'll have to look into this test too as I see it's also a test for secondary adrenal insufficiency, which is something that can be caused by having a narrowed left renal vein (renal Nutcracker Syndrome), and mine is totally occluded.

My cortisol and aldosterone are "within range" but lowish in the a.m. while renin is elevated and renin and the whole RAAS system does have influence where insulin resistance is concerned.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3551270/

give this a read