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Confused about previous addisons diagnosis and labs.

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Old 11-30-2010, 11:30 AM   #1
Join Date: Nov 2010
Location: houston
Posts: 2
Sterlingecho HB User
Confused about previous addisons diagnosis and labs.

I am a 32 year old who was diagnosed with addisons disease about 8 years ago when I was hospitalized for low blood pressure that left me going in and out of consciousness. At that time I was put on cortef and told I had adrenal insufficency but was never told if it was primary or secondary. After a few months of cortef I stopped taking it due to fears related to a previous bad experience with prendisone. I've not been on any steroid since and have done mostly fine till recent. My blood pressure has fluctuated to both high and low extremes enough to be hospitalized for both at least once. The majority of the time my blood pressure has remained high enough to warrant being on 2 blood pressure meds (verapamil Er and Zestril). Because of the high blood pressure I really didn't agree with the doctors diagnosis of adrenal insufficiency and I'm looking to see what others think.

In the past month to 2 months my blood pressure has bottomed out and as a result my blood pressure meds have been stopped while we try and get through this. During this time I've had extreme fatigue low blood pressure (lowest its been is high 70's over 40's but it usually stays around 90's over 60's), salt cravings that never seem to go away and increased thirst which I'm assuming is because of the large amounts of salt I've been talking in.

When talking to my doctor I mentioned the hospital diagnosing me with Addisons years ago but told him at that time I really didn't think it was accurate. He decided to run some tests and the results are as follows..

ACTH- Reference range 5-27 pg/mL... my results 38

Aldosterone- Reference range upright 8am-10am, < or = 28ng/dl... my results were <1

Cortisol- Reference range 4.0 - 22.0 ... my results were 16 mcg/dl

Sodium- Reference range 135-146mmol/L.... my results were 136

Potassium- Reference range 3.5-5.3 mmol/L ... my results 4.3

there were a lot of other labs taken but I'm only adding the ones I think pertain to addisons.

What do the lab results mean? Was the doctor at the hospital right about me having addisons? What other possible conditions could this be?

Edit to replace calcium levels with potassium as it is more appropriate.

Last edited by Sterlingecho; 11-30-2010 at 03:27 PM.

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Old 12-01-2010, 04:17 AM   #2
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Join Date: Mar 2006
Posts: 511
sparkie HB User
Re: Confused about previous addisons diagnosis and labs.

Your symptoms and test results sound similar to mine, although my BP was never that extreme low. What type of MD are you currently following up with? When my cortisol was low but I had BP fluctuations, my MD ordered a CAT scan of adrenals. I think she was trying to rule out both a pheochromocytoma and Addisons. The CAT scan was normal. That was a year ago. I am now awaiting results of a brain MRI concentrating on the pituitary/hypothalamus. My cortisol increased 2.62 fold on the ACTH, how about yours? Have you had your growth hormone checked? That can cause hypertension. Mine is at the very bottom of the range and I think this is contributing to my overall symptoms. Keep us posted.

Old 12-01-2010, 02:14 PM   #3
Join Date: Nov 2010
Location: houston
Posts: 2
Sterlingecho HB User
Re: Confused about previous addisons diagnosis and labs.

Right now for this issue, I'm only seeing my primary care doctor. I saw him today and he said he feels like it is indeed addisons disease but he wants to send me to an endo for confirmation. He also wants the endo to being treatment and then he will maintain things.

I had the ACTH stim test when I was in the hospital and diagnosed with addisons the first time but I have no idea what the numbers looked like. It is possible that I had a scan of the adrenals and pituatary area when I was hospitalized, as I remember doing more then one cat scan but I have no idea what it showed. I was out of state visiting a friend when that actually happened and don't even remember the hospital name. May have to do some research into that.

I have not had my growth hormones checked that I know of but will look into that. I know I was hospitalized for hypertension the first time at age 17 and they did all kinds of test including a nuclear medicine scan of something.

Looks like this may be a long road to diagnosis, but hopefully they can get it figured out.
I have multiple sclerosis and it shares some of the same symptoms which I feel is gonna confuse things a lot.. Only time shall tell I guess..

Thank you for your reply, I hope they get you some answers to your questions so you'll be able to have your symptoms treated successfully. Best of luck to you!

Old 12-02-2010, 04:55 AM   #4
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Join Date: Mar 2006
Posts: 511
sparkie HB User
Re: Confused about previous addisons diagnosis and labs.

I see we are both in Houston. We are fortunate to live in a city where we have a virtual buffet of MDs to choose from. In my humble opinion, I think you should be followed by an endocrinologist. Let me know who you decide to go with. I like my endocrinologist but he tends to be very dismissive. He does the appropriate testing but if everything comes back within normal limits, even if everything is at the fringes, I am deemed "perfect". I received a vague message about my MRI and apparently I need to call and the office wants to discuss with me as well as ordering additional testing. I think I am about to hop on the medical merry-go-round.

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