Cortisol rising without explanation

I have a question. From late 2009 to  early 2011 I was on hydrocortisone to deal with adrenal insufficiency following two procedures on the brain, one being removal of a pituitary tumor.

My cortisol results (for PM readings), where I understand the normal range is 70-325 are as follows:

In Dec 2010 it was 184
In mid 2011 AFTER I stopped taking the hydrocortisone, it was 230
In late 2011 it was 298
Today (mid 2012) it is 328

I checked the cortisol because I have developed pain in my fingers that cannot be explained and ran a suite of tests. I thought to add cortisol to the test list. The AM results over time have all been well within the normal range.

Questions: (1) Should I be worried by the spike in PM cortisol? And if so what does this mean? (2) Is the pain in my fingers (and at times in the upper leg) related possibly to the higher PM result?

I would appreciate any advice.

[rumpled]

Yeah, um, there is no definite test for Cushing's. That makes it really hard to diagnose. There is also no definite set of *symptoms* for it - I never hit the classics at first - I had the tumor long before I gained any weight for instance and know many thin Cushies - and I had low BP, no sugar issues etc. My issues were healing, acne, bleeding disorder, bruising, and no immune system whatsoever! So you may have had some of the many symptoms, but not a er, classic symptom.

It takes quite a few tests - and over time, and you have to determine elevated cortisol and then source. I would go pester your endo though.

[rumpled]

In general, high cortisol at night means a loss of diurnal rhythm and that means they should investigate for Cushing's syndrome. I was always low at morning and high at night.

I don't know what type of pituitary tumor was removed - but sadly, they do recur - mine did. Has that been checked?

[LowCortisol]

Hi Rumpled,

Thanks for the reply. My tumor was a non functioning type which will most likely reoccur I was told and for which I have annual MRIs
So far so sign of it coming back.

You say your tumor returned.

1. What type was it?
2. How long did it take to reoccur?
3. Did you/do you need to take action as soon as it returns or can you
wait until it gets to a certain size.

Re: my increased cortisol: do you think it is possible that post resection of the tumor I was in Addison's Disease territory and now (2.5 yrs post surgery and 1 yr post hydrocortisone) it is possible for me to swing to the Cushing end of the spectrum?

[rumpled]

Mine was Cushing's (I actually was er, lucky ha ha, enough to have two, so I had a prolactinoma too). It came back rather quickly - within a year. Mine was hyperplasia - a slime, so it does not show up well on MRI (it actually did not show up on the MRI before surgery!) but my tests show consistently that it is there and very active as my ACTH is very high unless suppressed by dex.

Non-functioning tumors are badly named IMHO - so they often have mass effect (if they get large) or just effect other hormones from the pressure on on the pituitary depending on where they land. Often after any pituitary surgery, one is low in cortisol for a while as well as thyroid (the pituitary is sensitive to being wacked about) and hormones can be lost just from that - growth hormone as well.

Cushing's is an odd beast - it can come from the pituitary or adrenals, or a tumor anywhere in the body or from too many steroids - so not only do you have to determine that you have it, you have to determine the source (which is not easy). Do you have any accurate ACTH readings (in that they are taken in a chilled tube, spun immediately after draw and you think the tech promptly froze them?) as ACTH is a fussy test and that can help determine source. Does your doc test all your hormones - are any other out of range?

[LowCortisol]

Thanks for the response.

What you say about Cushing's and hyperplasia is very interesting.

I forget to say earlier that my non functioning tumor stained for ACTH.

You ask about my hormone levels.  I have not seen my endocrinologist in 10 mths (and have not checked my hormones for about a year when they were all normal). The recent cortisol check was my idea (totally out of left field I added it to a host of tests my family doctor wanted to run for unexplained pain in my fingers.

Given the tone of your reply I should see my endo soon to test all the relevant hormones and investigate which if any is causing a problem.

One more thing. When I saw my PM cortisol results I was worried by the TREND: 230 then 6 mths later 298 then 12 mths later 328. Do you agree that regardless of the fact that 328 is close to the max in the range 70-325, it is disconcerting that the level is rising so much in the absence of corticosteroid supplements?

[rumpled]

Oh no... will you have to change your name??? LOL...

I see my endo every 4 months - but then again, I am not the most stable thing in the world. At least your endo still sees you once a year.

I would not be pleased at a constant rise - your endo may dismiss as some want a certain percentage over the range (why do we have ranges?) or 2x or so of the range (silly!) so not sure how your doc is going to take something given your history. Odd too that you stained for ACTH and they say it is non-functioning? How is that?

I would also check out a rheumy perhaps - once one auto-immune disease, you can get another and the pain may be another issue?

[LowCortisol]

Thanks for the feedback. You're right about the auto immune problems replicating elsewhere. I will book the rheum asap.

By the way, I looked over my notes from the surgery and understand that while the tumor stained for ACTH, I did not exhibit any sign of Cushing. I think I should see my endo sooner rather than later. Don't you think?

I read about a 24 hr urine cortisol check. Do you know if that is definitive?

[rumpled]

Yeah, um, there is no definite test for Cushing's. That makes it really hard to diagnose. There is also no definite set of *symptoms* for it - I never hit the classics at first - I had the tumor long before I gained any weight for instance and know many thin Cushies - and I had low BP, no sugar issues etc. My issues were healing, acne, bleeding disorder, bruising, and no immune system whatsoever! So you may have had some of the many symptoms, but not a er, classic symptom.

It takes quite a few tests - and over time, and you have to determine elevated cortisol and then source. I would go pester your endo though.

[LowCortisol]

Thanks. I will pester my endo and then report back to you.

One more thing. Recently I developed feeling VERY heavy in my arms. This happens at night and in the day. I had this feeling when I was LOW on cortisol but this occurred at the same time with having great difficulty getting out of bed. I no longer have problems getting out of bed but the arms remain heavy. Odd! As though I just finished a weight training exercise and need a break. But the strange thing is I dont exercise!

[rumpled]

No idea on the arms - but do let us know what happens with the doc. Best of luck!