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Adrenal Insufficiency Community
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14995219 tn?1437784271

Could I still have an insufficiency

I stared out with some serious stomach problems that lasted a few months. They stared in December, and I was turned away by doctor after doctor, told I had "IBS." So i pushed through the pain,swelling, vomiting, and nausea and continued working- teaching intense aerobic classes 2 times a day and personal training. In March I went to a new doctor and they considered a theory of maybe I had a yeast overgrowth and they treated me with 6 weeks of diflucan while I followed a low carb, no sugar diet.(more stress) By June nothing had gotten better and I had such serious pain that I blacked out. I thought enough is enough and checked into the ER where they admitted me after finding 3 things, 1) i had a completely non functioning galbladder, 2) I had VERY high eosinophils 28 % (a specific type of white blood cell) and 3) low cortisol levels.
They took out my gallbladder and I waited patiently to get better.
However that has been almost 2 months ago, and I am sicker than ever. I am so fatigued I can not work or even leave my house. I go to sleep exhausted and I wake up that way. My legs cramp and hurt all the time. My stomach is bloated and hurts, I cant eat anything without feeling nauseated, I always feel parched, yet all i drink is water, I have lost 15 pounds leaving me with nothing but skin and bone, I feel light headed and dizzy all the time, I get weird nerve sensations at least once a day putting my limbs to sleep or feeling like my there are needles poking me, I haven't had a menstrual cycle in 6 months, and I wake up with terrible stomach pain and heart palpitations where I get a feeling of waves of weakness falling over my entire body. I have been to the hospital and mayo clinic after these "waves" each time they find high eosinophils, and low cortisol (last visit, 24%eosinophils, cortisol 7.0 at 8AM
My cortisol fluctuates a lot, the lowest showing 4.2 at 9AM.

They gave me two stimulation tests for my adrenals.
AM base cort-14.0 30min-21.2- 1 hour-23.8.  

This was the most recent. Each time I am released from the hospital and told they will do more tests for things like Lupus and other strange things that don't seam to fit my symptoms at all. I have spent over 100 thousand dollars in doctor bills and tests (thank God for insurance).

I know I pass the criteria for a clinical diagnosis, but I cant help but feel adrenal insufficiency is still the problem, esp after all the stress I endured for MONTHS with my gallbladder.
So here are my questions,
Could I still have an insufficiency even though I am passing the stimulation tests?
If I don't have an actual insufficiency, is adrenal fatigue real? IF I only have fatigue, would I still have high eosinophils?
Does anyone with insufficiency have chronic leg muscle pain?
If I cant get a medical doctor to pay any attention to my adrenals since I barely pass their tests, who can i go to to get help with this? Specific names of any Doctors would be appreciated. I will travel, My husband and I are at our witts end with this. I feel like I am dying and I can't afford to lose another pound.
10 Responses
Avatar universal
Hi there. God you must be in bits with all this .
Question; Are you on any medication? did you start any meds since the problems arose? How are your potassium levels?
What imaging tests did you have? CT, MRI,?
What are your liver and kidney  function tests like?  Blood sugar levels?
Did you have a DST test? Also did they look at Pituatary gland?
I am no doctor, but to start you may need to just start again and re look at everything.
Maybe try to start with a clean sheet and look at everything. the hite cell count possibly would indicate some type of allergy or infection
14995219 tn?1437784271
Thank you so much for responding, I am absolutely in Bits.
I was put on diflucan in May for a suspected yeast overgrowth which may or may not have ever been an issue. Other than that I take no medicine.
My K levels are normal.
I have had a CT scan of my chest, and head. No MRI. But i am guessing if I had a tumor or anything on my glands (pit or adrenal) it would show.  
They have tested several of my pituitary hormones like prolactin and it was normal.
My hormones have plummeted since this started happening. I once had high testosterone, now all my levels are at the lowest end of normal.
I am not sure what a DST test is?
Thank you again
Avatar universal
Hi there. A DST test is .a cortisol test, called a Dexamethasone supression test. Maybe you should consider looking fo an Abdominal Ct scan? That will show the kidneys and adrenals. How did they decide to  take out the Gallbladder without imaging of the abdomen?
Maybe ask doctor about testing for Renin. Its the Renin/ Aldosterone ratio blood test. Did you have test for Catecholamines, its usually a 24 hour urine test. Testosterone is produced by adrenal glands, so if its dropping, they maybe should be looked at? Testosterone problems are usually involving the Adrenal or Pituatry glands. It is sometimes said that waking up feeling tired is a symptom of a drop in Testosterone. I forgot to ask if you have hypertension?
14995219 tn?1437784271
I have not heard of that test.
They did the ACTH stimulation test, like with the cosyntropin? (spelling)
And It came back at the low end of "normal"

I think I might have had an admoninal CT scan. I am not sure. They actually did a function test on my galbladder, like a HIDA scan.

But i am not 100% convinced I dont have something going on with my pituitary gland, because my LH level (which is apparently either secreted or controlled by the Pit gland) is below normal. Renin/aldosterone is normal.

I have not had the test for catecholamines.
I feel tired ALL the time. It is never ending.
& yes I have low blood pressure. It varies alot. It has been as low as 74/45

Avatar universal
To start, the low BP would definitely be contributing to the Dizzy light headed feeling. Possibly to the Tingling feeling also?
Is the LH not a variable reading depending on the timing of the test?
Is there any possibility of an infection or an Allergy contributing to this feeling? The Catecholamines tests for levels of a number of hormones produced by the adrenal gland. The main thing is adrenaline. Could this be under produced? Make sure they very thoroughly  scanned the adrenals as they can sometimes have small growths that cause problems,though usually they would have high BP as a possible symptom along with possible increased k. I take it that you have dealt with an endocrinologist specialist. there is some type of test where your blood pressure is tested lying down for a short period, then stand up and re take it. if the bp falls further, it indicates a problem with adrenals, i am not sure what condition is called, but hope its some help. that would be a really simple test to do yourself.
Avatar universal
im in europe, so dont think you would be getting any doc details as i guess your in the US
Avatar universal
COMMUNITY LEADER
The dex suppression test is only for high cortisol, not low.

You may need florinef - and have a renin/aldosterone issue as well...

If you feel better with high sodium, that tells and also your sodium and potassium levels will be wonky. I use a lot of salt tablets even on florinef to keep my BP up.
14995219 tn?1437784271
thank you, My renin/aldosterone was checked. Everything has been normal.
Avatar universal
Hope you are doing ok?
Avatar universal
hey, hope you're alright! sending you strength and love
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