Addison's Disease Community
help with acth results
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Addison’s disease, also known as Adrenal Insufficiency or Hypocortisolism, is an endocrine disease that occurs when the adrenal glands do not produce enough of the hormone cortisol and sometimes, aldosterone. Discuss topics including symptoms and treatments for Addison’s disease.

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help with acth results

I know addison's and cushings are opposites but I've been having extreme symptoms of both for years. It started with cushing's symptoms and now seems to be mostly addison's symptoms. As usual, I'm told my tests are coming back normal. However, I have had labs that appear abnormal to me and I wanted to see if anyone has input as to how to interpret this lab. I was told it is normal but readin it makes me think my cortisol was too high compared to the reference ranges for the time of day in all 3 draws. I've been having major fatigue, visual changes, cognitive probs, and depression which has all been blamed on fibromyalgia. I think something else is going on but drs not willing to have a dialogue about it. How do you read these results?

Time 3:58p
Acth 18
Reference range 4-48 pg/ml

1st draw
3:58p
Cortisol 15
Morning Reference range 8-25 mcg/dl
Evening reference range <6 mcg/dl

2nd draw
4:30p
Cortisol 26
Morning Reference range 8-25 mcg/dl
Evening reference range <6 mcg/dl

3rd draw
5 pm
Cortisol 32
Morning Reference range 8-25 mcg/dl
Evening reference range <6 mcg/dl
6 Comments Post a Comment
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657231_tn?1390151580
First, your doctor is not testing you at a time that is appropriate for diagnosis.

You have to go to the lab at 8am, fasting, and get a PROPER set of tests. The ACTH should be in a chilled tube and spun immediately and it is very difficult to get a proper test done (I battle each time!!!).

Now, just looking at your tests, it shows that you have indications of Cushing's syndrome - why? you have a loss of diurnal rhythm. Your late afternoon draws are high for morning. Cortisol should be highest in the morning and lowest at night - so it should be lowering throughout the day.  If you had a smart doctor, he would look at these tests and order midnight saliva or midnight blood testing and 24 hour urine testing as it is evident that you are not following a normal body.

The doctor should be running more tests.

BTW high and low cortisol have many symptoms in common. And if you have the cyclical or episodic form, you can have low and high symptoms from going from low to high to low. I had that form.
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Avatar_f_tn
Thank you. That's what I was thinking. I went to see her specifically to rule out cyclical cushings OR addisons. She had an intern conduct most of the appoint who kept wanting to say all my cushings like symptoms were pcos and the dr kept dismissing and scoffing at my input making me feel like I couldn't possibly have any valid concerns since I've been reading up on this stuff for years now. The intern kept talking over me and rewording what I was saying to support her theory. I started getting pretty pissed because I came 80 miles to see the dr for a second opinion to be taken seriously and not an intern. I became grouchy, had a very obvious hot flash where I was sweating and my neck/face got really red, and trembly where I couldn't squat or lower myself onto the chair with my arms.

She only did the acth test because I luckily talked my cariologist in to writing a letter saying to rule out addisons since he brought that up as possible causes for my fainting and nausea and dizzyness and orthstatic hypotension but normal heart tests. She kind of blew off the letter but the more irritated I got she reluctantly decided to do the acth test in the office after the appointment saying it was better to do it that time of day anyway.    She had me do one morning blood draw which my cortisol at 8:40a was 12.5 and other hormones were normal. That test I fasted for, the one I posted above I hadn't. BUTTT, I did have a ctscan with the contrast injection about 6 hours prior to the acth test. Maybe the contrast scewed it but I really don't think so. I've had the 24 hour saliva test come back similar in the past that keeps getting dismissed also. My body feels like I'm riding on a very turbulent rollercoaster of symptoms and my body feels like its shutting down after so long. The only thing she didn't dissmiss offhand and kind of shut her up was when I told her my sis had cushings from a tumor on her left adrenal causing critically low potassium resulting in an emergency surgery. So I don't know. I'm sufferring and worried and angry the drs aren't in the least bit concerned.    
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657231_tn?1390151580
Ah, so you can't do squat... sorry... LOL... I hated that test. I was ok for a while and when I failed it, I was trapped between a wall and the exam bed, and I could not get up. I also got stuck in a tub. To this day, I still have proximal weakness.

The PCOS argument is a typical one. Sadly, just because you do or do not have one, does not rule out Cushing's. I had both and it is very hard to get the docs to realize that OMG you can have more than one disorder and further, you can have them - gasp - at the same time!!!

I am not aware that contrast messes with cortisol testing.

For an odd reason, docs are taught that Cushing's is rare, that they will never see a case and therefore when they see one, they just cannot accept it. They also don't know how to test for it, interpret the testing they do do, or know when to send on to a real specialist. Also there is a quota and you always are over it. It has always been met.

Did your sis get the pathology report on her tumor?
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Avatar_f_tn
I don't think she did. And I don't think they explained it well to her either. She's got cognitive problems from brain damage from when she had open heart surgery as a baby. she doesn't remember things well and I keep asking her but all she remembers is her potassium was critically low and they did a surgery the next day to remove the tumor. She can't rememeber if they removed the whole adrenal gland or just the growth. They also have not done any followup bloodwork or medications. Maybe her adrenals recovered and she doesn't need med for it. Bothers me its been 5 years since her surgery and they haven't checked to make sure things are working correctly, tho. Her cognitive probs improved slightly but she's still symptomatic.

My family half thinks I'm crazy and half thinks I'm on to something. We all have very similar symptoms and I'm determined to get to the bottom of it. Almost all of my family is unable to work due to the many many symptoms that affect our thinking, moods, digestion, sleep, physical functioning. I'm now unable to work and fighting for disability. What id really like is to get to the bottom of it, get treated, rest, and get back to my life. I like working. The longer its taking, the more drained of life force, so to speak, I am getting and depressed. I feel like there's hope for me to get diagnosed and better, but that there is an invisible timeline where at some point, if its not fixed, ill be stuck like this forever. I'm 32. id like to spend the weekend at friends without having to lay down the whole time. Heck id like to be able to do dishes without recovering in bed for a day from pain, trembling muscle twitches/dizziness/headache. Id like to see without pain and distortion.

I'm sorry to hear how hard its been for you. You've been through it much worse. But I'm thankful for your advice which you've gained from unfortunate expriance. This dr I went to was supposed to be an expert. How do I find the right dr? Disability denied me saying I don't have proof of illness and I'm totally broke, unable to work, and soon will be homeless because all my money has been going to health stuff. What should I do now?    
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657231_tn?1390151580
I would ask your sis to fill out the paperwork - usually simple - to get a copy of the pathology. I would bet they removed the adrenal - the adrenal itself is pretty tiny so they typically just remove the whole thing. The other adrenal can do enough to take over, and so it can be perfectly ok that she can do well with one. But she should be aware of what the lesion is (I had thyroid surgery in college was told nothing, got records 20 years later and found out I really should have been told a LOT - like I did have the thyroid disease that runs in my family I told them about and the type of tumor is a type that tends to recur and my other side was at risk so the doc told me NOTHING and I had no information!!!)

I can understand the family - denial is a great thing. You are young, you will get over it, just exercise etc etc.

It took me a LOT of doctors - and I was told countless times that I was okay - just needed to diet, it was gyne, it was this it was that - but finally I just degraded. I was 28 when my pit tumor was found and it took 12 years to get my first treatment and it grew back right away. I had to have more surgery and then when out of disability. It is not easy and you have to have a lot of information (tests, data, docs) to prove disability.

I would start first with knowing what is wrong with your sister.
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Avatar_f_tn
Get them to check aldosterone and serum renin, in addition to electrolytes (potassium and sodium are the two most needed). Your cortisol raising like that in the evening is potentially Cushing's. AI and Cushing's can overlap symptoms in places, which is great fun for endocrinologists to maneuver around.
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