
Addison's Disease Support Group
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 occurs when the adrenal glands, seated above the kidneys, fail to produce enough of the hormone cortisol and, sometimes, the hormone aldosterone

Alicia777
I was interested in finding out if anyone on this thread had a similar result for their cortisol levels. Under ordinary circumstances my labs showed adrenal insufficiency with levels at 2.0. Finally, after a several months my Endo sent me for a Cortrysyn Stimulation test, the result of which is that I do not have Addison's disease with levels of 17.5 after being injected with cortisol.
Herein is the confusion, I would expect to have higher levels of cortisol just having been injected with cortisol with my levels taken at 30 and 60 minutes. I asked my Endo, why did I have levels around 2.0 without the injection, he told me he didn't know.
Does anyone on this thread have any further insight about this type of result? And if so, what did they do?
Thank you.
Love and Light,
Alicia
Herein is the confusion, I would expect to have higher levels of cortisol just having been injected with cortisol with my levels taken at 30 and 60 minutes. I asked my Endo, why did I have levels around 2.0 without the injection, he told me he didn't know.
Does anyone on this thread have any further insight about this type of result? And if so, what did they do?
Thank you.
Love and Light,
Alicia
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Not too sure what all is going on from your brief description, but in the cortrosyn stimulation test, you are not injected with cortisol. You are injected with ACTH, which is the hormone that tells your adrenal glands to pump out cortisol, which they did. If you early morning cortisol level was 2.0 - that is a bit low. However, your adrenals responded well to ACTH, pumping out a 'normal' level of cortisol in response. So, two things could be happening. Your pituitary may not be producing ACTH properly, thus not telling your adrenals to produce cortisol properly. OR your adrenal glands are lacking and not putting out cortisol properly in response to the ACTH your pituitary pumps out. The dose of the cortrosyn test is much higher than the amount your pituitary puts out. Seems to me the next logical step would be to check your ACTH level along with your cortisol level one morning. Unless, of course, you feel fine and pursuing this is purely academic. HOpe that helps. :)
Vanyel
Your Endo's next step should be finding out why you're ACTH deficient. Previous steriod use? Tumor? It's possible that there's no identifiable cause, but it's rare. (That's my situation.)
Thank you both for demystifying the procedure, I really don't want another problem. I took the cortrysyn stim test early in the morning and had to fast without taking my meds 12 hours prior to the test. I really had no clue what they injected me with and assumed it was cortisol. We all know what assuming means, I just looked it up and your right ... Cosyntropin is 1 - 24 corticotropin, is a synthetic subunit of ACTH.
Well, that's a good thing, my adrenals responded well to ACTH. I asked the Endo why I was walking around for months with my cortisol levels around 2.0, and he said he didn't know. I didn't feel reassured when I can't get more than three minutes with him and couldn't have an explanation.
Let me make sure I have this right, my pituitary may not be pumping the right ACTH levels to have my adrenals pump enough cortisol, and that indicates I may need to have my ACTH levels tested?
One more question, please and thank you. The morning of the test I did not have my pain meds or my PTU (propylthiouracil) for Graves Disease (hyperthyroidism). Is it possible the PTU is the reason for the low levels of cortisol and DHEA. I'm not up to the DHEA, don't know what it is ... didn't look it up.
I was researching CFS/FM and low cortisol is being associated with these other diseases of mine. But, the information on the net is not too informative.
No steroids, No tumors! I found out more from the both of you than my Endo. Thank you again, may you both stay well and happy.
Alicia
It seems unlikely the PTU would directly affect your cortisol or DHEA levels. DHEA is a hormone the adrenals produce that is an androgen - a male hormone - that both men and women have. They don't seem to know a whoie lot about what all it does, but it definitely figures into energy level, libido, and overall well being. Many docs will supplement it along with cortisol in Addison's patients. These hormones are a different chemical pathway than thyroid hormones so I don't think the PTU would effect them, or your ACTH level.
I can't tell you about CF/FM and cortisol levels. I don't know much about that. I think any chronic disease probably overtaxes the adrenals with the constant state of stress on the body and it would not surprise me at all if they would drive anyone into adrenal insufficiency - which could explain your consistently low cortisol level.
Sorry to hear your doctor can't spend enough time with you to explain some of this basic information. In m opinion that is a bad doctor. And he should have some idea why your AM cortisol level is so low, or at least a theory. To just tell you he doesn't know is a copout. Dang doctors were educated in all this stuff and should be able to at least formulate a theory. Sheesh.
With your other problems - the CF/FM and Graves Disease, it is probably safe to say your body does not function 'normally' and your endocrine system may be off in many ways as a result. It seems reasonable to want to check your ACTH level next - its simple to do. Might help to formulate a treatment plan, even if the diagnosis is elusive. We can't live without cortisol - for whatever reason - and if you know your body isn't going to produce it, you need to supplement it.
Good luck to you! Keep on learning.
Thank you for the link: http://www.pituitary.org.uk/ . It gave me a better understanding of pituitary function and how it may apply to my situation.
After reviewing the material I was brought back to my car accident back in 2005, or was it 2006? Prior to the accident I was a fully functioning, pain free, full-time employee at a financial institution, who could dance, exercise and generally had a great life. After the accident, I was pain-ridden functioning at about 20 percent, and some days less since the accident.
It took approximately a year for the attending physicians to diagnose Graves Disease. It took until my litigation was completed for the attending physicians to come up with FM, and then CF, which I totally rejected. But, as hind sight is a perfect science I eventually had to accept this diagnosis.
I have a headache everyday, all day, non-relenting, 24/7, that vacillates between tension-pressure headaches to migraines with aura. It is conceivable that my concussion-whiplash was a bit more and may be the root cause of my problems.
I want to ask this thread if headaches played a factor in their pituitary problems? Additionally there's the tinnitus that doesn't help the headaches either. Does anyone have tinnitus that went along with their pituitary dysfunction?
I don't believe there are any genetic factors at work in my situation, no one in my family lineage has had these problems. At any rate a pre-disposition is not a guarantee you will get a disease, it would be based on a social environmental factors. I was not born with these problems, they are acquired by life events!
Thank you for all the help!
Blessings, Love and Light,
Alicia
To add to what's already been stated, it's been my understanding that the Cortrysyn Test is rarely used any longer, due to it's lack of reliability, as compared to the ACTH Stim Test.
Re: Headaches and tinnitus. Yes, I too have the same. My headache is not a typical headache, rather a localised head pain, with tinnitus on the same (left) side. I experience minor auras, which resolve quickly. I do get relief with a low dose (81 mg) aspirin. I know aspirin is contraindicated, while taking HC, but I become desperate, yet judicious, when the pain increases and ignore those 'med warnings'.
There is literature which correlates low cortisol to CFS/FM, however there is no specific test to diagnose such. The clinical diagnosis is rather a vicarious one. I had posted a question about low IGF-1 levels. Interestingly, my MD said this test is the 'closest' test available to gain insight into the probability of CFS/FM, i.e., low IGF-1 levels are indicative of CFS/FM. But again, it all reverts back to low cortisol.
My MD & I are perplexed as to how I developed AI..no tumor, trauma, etc. It's the one thing that drives me most insane. If I had answers, I'd be satisfied, 'diseased' or not!!
You seem to be quite astute, so keep pushing for answers. Remember, your health & well being are more important than your MD's time!
Best wishes.