Discussions By Condition: Endocrine conditions

At the end of my rope, doctors are stumped... Addison's with high cortisol?

Posted In: Endocrine conditions 3 Replies
  • Posted By: VPrice1030
  • July 18, 2013
  • 03:18 PM

Hi all, thanks in advance for any help. I'm a 28 y.o. female with no other medical history except for renal obstruction repaired surgically at age two.

Starting about six months ago, I started developing early satiety and postprandial abdominal fullness and pain. I also had extreme fatigue and night sweats. I have gone from doctor to doctor (rheumatologist, GI specialist, neurologist) and none had any idea. I've finally found a good PC who is looking at the whole picture, but at this point, she is stumped. Here are my symptoms/lab work:

-Postprandial abdominal pressure
-Generalized upper (vaguely right quadrant) abdominal pain and tenderness
-Orthostatic hypotension
-Salt Cravings
-Night sweats
-Fever or low body temp (Sometimes I'm at 95.4, sometimes I'm at 101...usually running a fever at night)
-Extreme fatigue
-Nausea and vomiting 60-90 minutes after eating
-20 lb weight loss (I'm quite thin to begin with, my BMI is now at about 18)
-Muscle weakness, loss of muscle tone
-Nighttime lower back pain
-Hot, flushed skin
-Generalized itchiness

Labs have shown the following:
-TSH of 9.2 (TSH taken about two months ago was well within the normal range)
-Morning cortisol of 32.4
-Normal brain MRI
-Abdominal CT showing what looks like slow/lack of bowel movement (I don't remember the term... I don't feel constipated and am having normal BM's, but the CT and x-ray showed otherwise... the doctor said they didn't look normal, but in a way she couldn't put a finger on), as well as slight ureteral stenosis on left kidney (the one I had surgery on)

-Biopsy of abnormally large/shaped lymph node was benign
-Erratic blood glucose levels, high two-hour glucose level
-No celiac disease
-Normal PTH and T4
-RF Negative
-Severe vitamin B and D deficiency, not remedied by OTC vitamins
--Slight anemia
-low RDW
-low EO# and MONO#
-Elevated HS-CRP
-Elevated LDH
-Urinalysis normal

-Currently waiting for results of ACTH stimulation test

My doctor was convinced it was Addison's, but the extremely high morning cortisol obviously doesn't fit that, and I have zero symptoms of Cushing's. She still suspects something endocrine, because of the wacky cortisol, TSH levels and erratic body temp.
Does anyone else have any ideas? I'm starting to lose my mind, I can barely function day-to-day and waiting days/weeks for tests and to see specialists is killing me. Her theory is that, in much the same way the pancreas can over-compensate and pump out too much insulin before someone becomes diabetic, my adrenals are doing the same thing. I usually feel OK in the morning, and then deteriorate like clockwork throughout the day. Is this possible?

Thank you again :(

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3 Replies:

  • I know how you feel - I have a whole raft of symptoms and the doctors have never got to the bottom of it all! Just out of interest, have you tried going gluten free at all? I see you have been tested for celiac disease, but I keep seeing information about people still reacting to gluten even though they have a negative celiac test, and various odd symptoms disappearing once they take gluten out of their diet. I only ask because I am going to give it a go!
    Inndie 4 Replies Flag this Response
  • Have you had Free T3 and Free T4 checked for thyroid? Your TSH indicates hypothyroidism, even with a normal value a couple months ago, the swing could indicate something like thyroiditis or even Hashimoto's, when your thyroid swings. Hypo or hyper thyroids can have symptoms you describe-you can be hypo and have weight loss (a lot of people attribute it to gain, but yes, you can lose weight) plus itchyness, fatigue, weakness, pain,...a lot of what you described sounds like thyroid. You also said you have low levels of vitamin B and D, not remedied by OTC-lack of those can do a number on you, too. Have they suggested a higher dose of D or shots of B12?
    SunnySadie 2 Replies Flag this Response
  • This thread is over a year old but I thought I would check in on you. How are you now? Here is something that may help with what your dealing with. I'm 43 years old and a female in 1993 I was diagnosed with Congenital Adrenal Hyperplasia 21 OH deficiency I had a stress dose of cortisol for adrenal crisis and was sent home with no other instructions. Being a young mother and ignorant of this condition I thought it was a one time event and tried to move on with my life. Needless to say for twenty some odd years I had no idea I was in trouble. I had an ACTH stimulation test that showed a morning cortisol of 16 the 17 hydroxyprogesterone level was 10,900 at thirty minutes. I asked for an adrenal washout CT scan and it showed a .09 x 1.3 cm growth on my left adrenal gland. These can produce excess cortisol but is you are CAH 21 OH deficient you can't use it and full physiologic replacement should be given. I recommend Dr Maria New at Mount Sanai hospital in New York she is an expert in this
    Murmuration 1 Replies
    • February 19, 2015
    • 01:13 PM
    • 0
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