Trying To Get Help In Minnesota

Addison's Disease
#1

I live in St. Paul, MN. I am 37 years old and a year ago was diagnosised with Hashimoto’s and am taking Armour Thyroid. I am the mother to 4 children, and my oldest 19 has Bi-polar and my 15 year old son has Type 1 Diabetes. Stress is a everyday thing in my life and I have been trying for the past 2 months to get rid of as much stress in my life. But for the past month I have been expierencing severe nausea along with lower back pain, almost in the kidney area, but I had a urine test done and its not a kidney infection. Also I have off and on stomach pains, which at times are severe, along with my legs just ache severely. I crave salty chips and salty foods almost daily, and have uncontrollable thirst at times where it seems nothing quenches it. I feel completley wiped out and tired all the time, I have no energy to do anything, and I get lightheaded and dizzy spells alot. And for the past 3 days I have gotten headaches. And on and off between constipation and diarhea

I see an Endo doc for my Hashimoto’s thyroid and he says I have signs of Addisons but I don’t have the tan color skin, so he did do a blood cortisol test a year ago and one this month.
Last years 23
this years 10.1

I am tired of feeling this way, and feel as though I am slowly dying. I want to feel better and am searching for others from minnesota that can offer advice on what docs they know that do the testing and helped them the most. Also is there any other kind of doctor or person that can diagnosis addisons. I thought maybe a urologistseeing that the adrenals sit on top of the kidneys, but they won’t see me with my symptoms either. So any advice is appreciated.
Thank you So Much
Donna

#2

Donna,

Sorry to hear that you are not feeling well. I’m not a doctor, but I do have Primary Addision’s and Type I Diabetes. The symptoms you describe are the exact symptoms that I went through.

I believe the tanning of the skin happens when approximately 90% of the outer cortex of the adrenal gland has been destroyed by your immune system. Your pitutary gland sends a hormone call ACTH to your adrenal glands telling to secret more hormones. When your adrenal glands, don’t work, the pituary gland sends more and more ACTH. This over abundance of ACTH causes an over piqmentation, or darking of the skin.

I experienced all of the symptoms that you described before the darkening of the skin.

The doctor you need to see is an endocrinologist. Since an untreated Addison’s patients are low on various hormones, they are very passive and not good advocates for themselves when they see a doctor. That is why you must take someone along to press your case to the doctor. The more informed that person is, the better off you will be. Since Addison’s disease is very rare, most endocrinolgist may not have must experience with it. So you may have to call around and find a endo that has Addison’s patients.

The gold standard for the detecting the presense of Addison’s is the ACTH Simulation test. Also, I believe their is a lab test for detecting the presense of Anti bodies that are attacking your adrenal glands.

Again, I am not a doctor, but I hope this helps you get a diagnois.

Chad

#3

Yes’ My Endo said all people get the tan skin, and because I don’t have that he just dismissed Addison’s even after he was the one who said all my symptoms sounded just like Addison’s.

The only tests he did was blood cortisol
Last Jan 07 came back 23
Last Week it Came back 10.1

So because the normals are between 4-24, he said even if I was a 4 I would still be considered normal and couldn’t have Addison’s.

Has anyone else had a NORMAL RANGE blood cortisol and still ended up having Addison’s when they did the ACTH test?

#4

Donna,
I live in Eagan, MN! Nice to meet you. What did your doctor say about your
test results?? Does your doc think that everyone with Addison’s gets tanned
skin? It is not a symptom that everyone has. Did your doctor do an ACTH stim
test?? That would be the test you want to have. All signs point to
Addison’s, so I would think an endo would certainly pursue that. A lot of
people with one autoimmune illness end up with more than one. I have primary
Addison’s, was diagnosed in 1996.
If you would like you can e-mail me privately @ suzn7878@comcast.net .
Susan

----- Original Message -----
From: “Donna6270” addisons-cpt7576@lists.careplace.com
To: suzn7878@comcast.net
Sent: Wednesday, January 23, 2008 2:16 PM
Subject: [addisons] Trying To Get Help In Minnesota

#5

Hi Donna,

Re the tanned skin, my mum has had Addisons for over 25 years and she was literally hours from death when they started treating her and her skin was not tanned at all. I was diagnosed last year and my skin wasn’t tanned either. My cortisol was low but still in the normal range, it was just that with my mum’s history and my symptoms Addisons was a strong possiblity and the ACTH Stim test confirmed it. I also met a lady last week who has had Addisons for 8 years -she did not get tanned either. So tanning is def not a certainty, you really need to try to get the ACTH stim test to get a definate diagnosis.

Best wishes,
Cheryl.

#6

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My adrenal glands were removed about 1.5 years ago and just recently I’m
starting to see some tanning in odd places like armpits, under breast,
behind knees etc. The majority of what I labeled “weird” are parts of me
that never see the sun for the most part. I am very, very fair skinned w=
ith
the red hair complexion of pale and tons of freckles. Of the few traits
from my mom I had to get this one! Dad is olive skinned and I look
like a carbon copy with different skin.=0D
=0D
Renee=0D
=0D
-------Original Message-------=0D
=0D
From: Cherylb2450=0D
Date: 1/24/2008 8:28:00 AM=0D
To: greyhoundlover@gmail.com=0D
Subject: Re: [addisons] Trying To Get Help In Minnesota=0D
=0D