Stumped by chronic illness... Should I investigate adrenal insufficiency further?

[cienanos]

I've been having a huge amount of health problems since January, so about 11 months. It started suddenly with stabbing right sided abdominal pain, and bloating. Then back pain, chills, exhaustion, severe nausea, weight loss, lack of appetite, strange headaches, heart racing (left arm pain) and dizziness. I've had dark circles under my eyes for months, and mysterious bruises appear on my arms and legs. I've been in the ER twice, I've seen 14 doctors, had 50K worth of tests and am still undiagnosed. So now the latest is idea that this is secondary adrenal insufficiency, which seems to fit the waxing and waning symptoms I'm experiencing and would explain why it's gone undetected by so many doctors. MRI of my abdomen didn't show any damage to the adrenals, and I have no history of steroid use, trauma, or surgery. I have not had an MRI of the brain or pituitary. My endocrinologist says from the results that my cortisol and ACTH readings are normal, and says that after 11 months of suffering the results would be more definite. She said she would order an ACTH stim test for me if I insisted, but because the test results don't indicate an issue it would not be covered by my insurance and apparently costs a fortune.
So I understand this is a rare disease, and it's a difficult diagnosis. Would there be any benefit to me paying out of pocket to get this stim test, or is it more likely that I should pursue other avenues for treatment? Any advice would be appreciated, especially if those who have a diagnosis had much more clear-cut test results.

I know you are not doctors, but any help or even some positive thoughts would help.

- "Jane"

ACTH: 6-58 pg/mL - 23

CORTISOL AM: 6.7-22.6 ug/dL - 12.9

T4,FREE,NON-DIALYSIS: 0.60-1.60 ng/dL - 0.99

TSH, 3RD GENERATION: 0.34-5.60 uIU/mL- 3.25

The non-endocrine stuff...

BUN/CREATININE RATIO 17

GLOBULIN 1.8 - 3.3 g/dL 2.7

SODIUM 136 - 144 mmol/L 139

POTASSIUM 3.2 - 5.2 mmol/L 4.6

CHLORIDE 101 - 111 mmol/L 106

CARBON DIOXIDE 22 - 32 mmol/L 23

UREA NITROGEN 8 - 20 mg/dL 12

CREATININE 0.44 - 1.03 mg/dL 0.72

CALCIUM 8.9 - 10.3 mg/dL 9.5

ANION GAP 5.0 - 17.0 10.0

PROTEIN,TOTAL 6.1 - 7.9 g/dL 7.3

ALBUMIN, SERUM 3.5 - 4.8 g/dL 4.6

BILIRUBIN,TOTAL 0.3 - 1.2 mg/dL 1.0

AST 15 - 41 IU/L 18

ALT 14 - 54 IU/L 17

ALKALINE PHOSPHATASE 32 - 91 IU/L 44

GLUCOSE, PLASMA 74 - 118 mg/dL 78

[gator457]

Have only recently been diagnosed with secondary adrenal insufficiency and the ups and down s are confusing to say the least.  

[cienanos]

My doctors also believed this was a pancreas/gallbladder issue. I has 2 abdominal ultrasounds, and MRI of my abdomen and a HIDA scan with no problems found. Pancreatic enzyme levels were fine, no history of alcoholism.

Yesterday I tested positive for entamoeba histolytica (microscopic parasites, yay). I had some kind of bloody dysentery in Bolivia nearly 9 years ago, so... maybe it rose from the dead in a different form, without the diarrhea? I can find so little information on it since it is not common in developed countries. Here's hoping this diagnosis sticks, that would be great if this all goes away with a few stupid pills!

[rpwoodard]

By any chance, did the MRI of your abdomen include your liver and gallbladder?

[ggreg]

From what little I know, it sure sounds like a problem either with the liver, gall bladder (maybe gallstones), or where their ducts empty into the bile duct, so the pancreas may also be involved.  Your symptoms match up fairly well with all, but in diff combinations.  A good internist is who you should see, find a group near the hospital in your area.  A general family doc is not your best diagnostician.  Each problem requires diff tests... you can look up in Wikipedia all sorts of stuff about symptoms of disease, tests that should be run, and treatment.  Hope this helps you out!

[rumpled]

Not ever auto-immune disease has those symptoms... And I have auto-immune disease with normal sed and Ana testing but that is likely due to my steroid dosage, I had very high crp for a while. It just can take a while for testing for show itself for something, journaling for triggered may help.

[cienanos]

I have decided not to do the stim test as my endocrinologist and primary doctor (and you!) have told me it would not reveal anything. Auto-immune sounds plausible but I don't have joint pain, rashes, or a high ANA (1:80) so the search continues.

Anyway I'm always searching for answers so I really appreciate the time you took reading this and replying. Thank you! :)