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Addison's Disease Message Board
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Old 01-06-2013, 11:52 AM   #1
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jersey mom HB User
Could it be Addison's? Please help.

Hi,

I had a life changing illness this year that nearly took my life in July. Started off with a crushing headache which progressed to a fever, shaking chills, extreme confusion/lethargy and extremely low Blood Pressure. Sent to ER and given fluid resucitation which didn't help my low BP. Blood platelets were low as well as WBC count. Cortisol measured a 7 on the one occasion it was read. Sent to ICU and put on vasopressors and then in ICU for 1 week. Diagnosed as Septic Shock though no source was ever truly found. Looking back now, as i learn more, i'm wondering whether this could have been an adrenal crisis. What do you think?

After home from hospital my blood pressure never fully recovered. I was dizzy all the time, unable to drive a car, exercise intolerant, hypoglycemic, blood pressure readings ranging from 70-85/45-55. In a nutshell, very sick. Unable to work and barely able to manage my kids and household without lots of help.

In September (2 months later) I went to see an endocrinologist who ordered a cortisol blood level, which was 13.5. He did not feel it necessary to do a ACTH stim test to rule out AI/Addisons. He basically said I would be loosing weight if I had AI. I have lots of the symptoms like hyper pigmentation, lifelong low BP, episodes of shock level low BP and general fatigue.

(I remember one time in the past giving blood and having to spend the whole afternoon lying down at the donation center since i was passing out ever time i stood. Is that maybe another warning sign?)

That same month I met with an infectious disease doc who prescribed florinef, on the basis of my cortisol only being 7 during my illness. To him, that alone would confirm AI since being that sick is a time when cortisol should be high. Do you agree?

Lots of side effects with the Florinef, but the blood pressure finally came back and i was getting my life back...I weaned off it and was fine for one month drug free until a recent colonoscopy nearly sent me back to that horrible nightmare low BP state again. I was given twilight anesthesia and a routine colonoscopy. Upon waking my BP was 72/40 and I thought I would pass out. It took nearly 3 days for my BP to recover to a normal level again. That can't be normal, right?

I guess i'm wondering if you think this all sounds like I may have adrenal insufficiency. I've been checked out by a cardiologist who ruled out any heart issue.

Also, wondering...

*any others a normal weight with AI/Addisons?
*can you shed light on the difference between blood cortisol and urine or saliva readings. Which is the most accurate?

Thank you in advance for any thoughts you may have!!!!

 
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Old 01-18-2013, 02:08 AM   #2
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tfisher817 HB User
Re: Could it be Addison's? Please help.

Bless your heart......I'm no doctor but it sounds like maybe you're developing some of the signs of AD or just adrenal fatigue. I had a horrible case of Mono at the age of 35 and never recovered ended up with Addison's. The fact that you felt better on Florinef could be a sign too....what did the doctor say after you stopped it and everything went to blah again? and you wont always have the weight loss with addisons. Your hyperpigmentation does it look like an overall tan or just where folds of skin and scars are?

Last edited by tfisher817; 01-18-2013 at 02:10 AM.

 
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Old 01-18-2013, 06:22 AM   #3
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jersey mom HB User
Re: Could it be Addison's? Please help.

Thank you so much for the kindness of your reply. I appreciate the feedback so very much...

The skin discoloration is more patchy on my face (like melasma) and freckly around my mouth. Also have very dark folds on my neck. Have some odd, dark streaks/lines (not stretch marks) on my lower back that are brown and have been there for 3 months.

I agree that the fact that the Florinef helped to such a great degree must mean something.

2 docs have said that they think I may have a autoimmune disorder...to my mind it's most likely addisons. I have some risk factors like getting cortisone shots in the past.

I have an appt with a new endo in February and I'm hoping she'll perform that stim test for me so I can get some answers.

It's so upsetting to be so sick and have no answers. Life feels like it's on hold.

 
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Old 01-20-2013, 04:33 AM   #4
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tfisher817 HB User
Girl I could write a 50 page thread on here about life being on hold due to chronic illness and depression w illness ... Unfortunately addisons patients tend to get misdiagnosed and close to death before a correct diagnosis is made. I was lucky my was and is sort of textbook so my PCP picked it up very easy as my skin was almost black

 
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Old 01-20-2013, 04:34 AM   #5
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Join Date: Jan 2013
Location: Birmingham, al
Posts: 26
tfisher817 HB User
Girl I could write a 50 page thread on here about life being on hold due to chronic illness and depression w illness ... Unfortunately addisons patients tend to get misdiagnosed and close to death before a correct diagnosis is made. I was lucky mine was and is sort of textbook so my PCP picked it up very easy as my skin was almost black

 
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