Addison's disease (also known as chronic adrenal insufficiency, or hypocortisolism) is a rare endocrine disorder. It is estimated that it affects about 1 to 2 in 100,000 people. It...
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Mom has no diagnosis
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Thanks for reading this question!
Over the past three years my mother has been having “spells.” They started out as severe diarrhea, weakness, dehydration, low blood pressure and ended up on the bathroom floor—Dad would then take her to the ER for fluids, assuming it was food/GI related. This helped with the dehydration symptoms, but not the weakness. They put her on Levbid which she could put under her tongue to slow down the diarrhea, which does help but doesn’t fix the fatigue or stop the attacks. Later on she could tell she was starting to have ‘an attack’ when her hands and feet got ‘tingly’ – she would then start drinking as much water as she could, but always ended up at the ER for fluids. For the past 6 months she now has continually prickly and numb feet and hands and the attacks are happening more frequently. Also, her ability to handle stress has bottomed out; just the mention of a “test” and she gets frantic. Last week she was feeling extremely lightheaded with low blood pressure and on Friday she blacked out and woke up on the floor in her kitchen with a broken shoulder (clavicle) – in the ambulance her blood pressure was 66/45. This time the hospital admitted her. Her blood pressure improved but would drop whenever she sat up or stood. They began running tests, heart-related and neurological. All came back normal with the exception of her cortisol level which was 4. However, when they ran the ACTH she tested normal and they said the 4 was most likely a fluke. After a week of tests, they sent her home saying they didn’t know what was wrong with her. She is still light-headed and extremely fatigued every two-three hours and very nervous about having another spell. The neurologist is planning a nerve biopsy to look into her limb numbness. My sister and I researched the low cortisol level and that’s when we discovered adrenal insufficiency/Addison’s Disease. The list of symptoms sound to us so very much like Mom’s problem, but with the ACTH coming back normal we are stuck with questions and no answers. Does this sound like Addison’s to anyone? Does anyone have any ideas of where to go from here? Any help would be greatly appreciated! Posted on 07/19/08, 02:07 pm |
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Do you have an Endocrenologist? Low cortisol is a number one factor for Adrenal Insufficiency. I have just been newly diagnosed and it is critical that you get the right diagnoses. This is not something to play around with. From what I 've been told it is very hard to diagnose but you need a specialist to confirm the findings. 
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I don't mean to scare you at all , there are other tests that they do ex ray of the abdomen , ct of the brain and steroid tests, after they put you on steroids, but mine was based strictly on low cortisol levels. my other tests showed negative. It was confirmed by my internist and endocreologist both after a hospitalization.
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seems weird , you may just want to have a consult because mine ran low for months before I actually became diagnosed with AI, although all my other tests where fine, intense stress of a surgery and medical issues actually brought it on, so they think. so you can't go off of just one cortisol level. It is very rare and hard to diagnose this disease. I hope a pray they will find the correct diagnoses for your mom. I know this is a hard time for you too hugs your way...
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A 4 cortisol reading is low even at that hour of the morning. I would go to another endocrinologist until you find someone that will diagnose her with adrenal insufficiency. My ACTH came back normal too but at a reading of 5 twice in the am I was put on hydrocortisone immediately. As deneeen says it's nothing to fool around with and I find most endocrinologists don't even understand Adrenal Insufficiency. I wouldn't second guess them I would just go to another endocrinologist. Their egos don't allow them to be wrong.
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