Anyone With Elevated Cortisol?

[Katybug]

Hi there!

My rheumy wants a full endocrine workup done on me. SHe and I were both surprised to learn that, after calling 4 different endocrinology practices in the Baltimore area, in fact the ones considered the best in the area, none of them will see me as a new patient unless I already have blood work showing that I have an endocrine problem. She wanted an endo involved because of the complicated nature of my issues. So, I am going to see my PCP on Monday for him to order the blood work...that of course brings into question if we will get all the appropriate tests...but that's another issue. If you all have any suggestions on things I should make sure are included I would love that.

But, here's my real question: I have been having excessive, very quick weight gain and I also have extremely excessive sweating (I mean sweat through my clothes on a 15 min. walk on flat ground in 55 degree weather with a breeze .) In the last year, I have had 2 A.M. Cortisol tests that have shown a reading that is above the high reading but within the "standard deviation" so no one has really looked at it. I am wondering if this could be a contributing factor to the weight and sweating issues. Does anyone have experience with this? I am also going to re-address some suspicions I have regarding my thyroid which could also be a culprit for me.

[Lemons2lemonade]

Katy, have you had your potassium levels checked, how do they run?

[Mytwogirlsrox]

I had my cortisol checked and it was really high... Like 4 times the normal, but I was having severe panic attacks, not sleeping, eating, flushing etc... Endo said it was due to anxiety/stress, which I believe

I don't know what symptoms your having, but I have had a whole endo work up ad everything was normal.. But it seems like I have just plain ole

Pots

[Katybug]

lemons - My potassium is always right int he middle of the range, so that seems to be ok.

mytwogirls- I don't have panic/anxiety attacks, so that doesn't seem to be the problemo.

[sue1234]

My last endo work-up showed an 8 a.m. cortisol of 22.7 (7-25) along with an ACTH of 50.5 (10-60). Nobody explains why both are on the high side of normal. A few years ago, all of the places I had cortisol and ACTH run, these numbers would have been right above range. But, now that I get these numbers, they are all the sudden IN range at this lab. Those were serum, but my 24-hour urine cortisol remains on the low side, so have no clue what all that translates to.

I guess the point is, I do run highish on the cortisol and ACTH part, and have wondered what role it might play.

[jrlehnardt]

interesting.... i have low cortisol levels. and i have hyper pots and high norepinephrine levels. so just the opposite of having high but i also have been putting on weight . i wonder what sll this could be?

[firewatcher]

My morning cortisol is high-normal, but will not double at stimulation.

Chronic stimulation from stress or illness, causing a prolonged fight or flight response can cause adrenal hypertrophy, explained here:

http://ajpendo.physiology.org/content/291/5/E965.full

[Katybug]

fiewather - Yes, amongst other things the rheumy wants to know if my adrenals ar "fried" in her words. I really hope not.

[sue1234]

Odd in the article that they mention that the onset of depression is linked to the elevated cortisol. That is oddly one thing I don't have----depression. In fact, I wonder about that, because my health situation could clearly be a situation for it to arise. For some reason, I am almost the opposite of depressed, and very up beat (even though I easily get frustrated with medical care!). Maybe that is telling of what might be "off" with my health. Something that makes you overly "okay".

[jrlehnardt]

sue1234- that is exactly how i have been, and i wondered why, with having so many ailments and struggles that pots brings about and eds and having a military hubby and having gone through a year deployment during my pots i have always kept happy and not been depressed. now dont get me wrong there has been a few times where all the stress, mainly from frustrations with doctors (lol) that i have needed a good cry and done it. but for the rest of the time i have always looked for the good in my life. i wondered if it was from my experience of being a military wife. i learned early on to make all of our moves an adventure for our children. and my children nevef looked at leaving their friends as a bad thing or during deployments i kept myself and the kids so busy that we didnt have time to be depressed. and the last 2 years of being in bed i have learned to find a new me, and not get depressed over not being able to do the things i used to do, or the things that i had before defined myself as a mom or a wife. . all of my doctors have been amazed with me not being depressed throughout all of this, but i have looked at it as someone else has it harder than i do

[sue1234]

I am a military brat!!! I can say I loved moving all over the world and have some of the best memories from those experiences. I always made new friends whereever we moved to, and with the use of Facebook, have found some of them. Your kids will, in the long run, love having all of this exposure to different places.

[jrlehnardt]

oh yes, they already have. i have just seen where the kids will take any change or situation the same way the parents react to it. every place we have been i have made sure i have found all the fun things to do in those areas and it has always worked. even now with my health situations my kids dont get to do soooo many things but we just do things differently and have learned not to take things for granted. like my kids get so excited if i am able to sit with them at the table for meals. or they love it when my hubby sets dinner up on our bed and all 7 of us eat dinner in bed with me. it is the little things to us that matter.

[CharmedLinz]

Katie here is my take......

If you can, have your PCP schedule an ACTH Stim Test..... LOW DOSE if possible. This might be hard to get covered by your insurace unless you have a reason and Doctors behind it.

Otherwise.........

Make sure the lab drawing knows what they are doing. Cortisol has to be drawn between 7 and 8 AM.

Get an ACTH draw at the same time.......... but the only way it's accurate is if the tube is on ice prior to draw and immediately after, make sure the lab knows exactly how to run it. I had an infusion center screw mine up.

Sue--- I would be in heaven if my ACTH was 50. 50 is good, means your pituitary is firing to make cortisol. My ACTH runs between 7 and 18.

The range for our lab starts at 0........ problem........ you'd be dead. From all the reading I've done over 35 is optimal.

Now back to Cortisol, mine is typically on the low side......... 4-18 and the 18 was during a full on panic attack after a 12 hour water fast....... not a smart move.

I've had 2 Stim tests, one high dose, one low dose. They were both fairly in the gray area leaning towards a problem. It took my surgery and my cortisol dropping to 1 for everyone to realize there is a problem...., but it's not with my adrenals. My Pituitary is not stimulating, this goes along with what we are presuming is Polyendocrine Failure though.

However I did a Saliva cortisol 4 times in a day test and it showed different. This was a couple years ago though. That test showed I was right at the top of the level at 8AM then at Noon I was LOW, then the other 2 readings were right above the low.

My Urine cortisol is always extremely LOW, so who knows........my body switches things around on an hourly basis I think just for fun, I'm like the weather, if I don't like how i feel just wait awhile and it will change.... usually to something else I don't like.... LOL

Here is my opinion on what else you should have run........

Ferritin

Thyroid AB's

Free T3 and T4 and TSH

Growth Hormone and IGF-1

SHBG

if you are still menstruating get Estrogen, Progesterone, and Testosterone.... LH and FSH.... run on day 3.

Insulin and Glucose (fasting)

and if you aren't on florinef..... Aldosterone and Renin (special instructions for testing though)

oh and just for kicks, since I did and it got me a big answer.... Intact PTH with Calcium

All of these will look at Endocrine function and especially Pituitary/Hypothalamus and how it reacts with the ANS

Hope this helps some.

[sue1234]

Liz, my point with the ACTH is that it is high in relation to the highish cortisol. ACTH and cortisol should be opposites of each other. When cortisol is lower, ACTH is higher as it stimulates. When cortisol rises, especially in the higher area, ACTH should drop to the low end of the range. That's how the feedback works. And, that is why I am concerned with my ACTH being up at 50 while my cortisol is up at 23. It looks a bit like my pituitary does not regulate my ACTH correctly.

[issie]

My morning cortisol is high-normal, but will not double at stimulation.

Chronic stimulation from stress or illness, causing a prolonged fight or flight response can cause adrenal hypertrophy, explained here:

http://ajpendo.physi...291/5/E965.full

Interesting article. I had a doctor tell me years ago that she thought I went from being hyper cortisol to hypo - by basically over taxing the use of my adrenals - through stress, illness. This article would confirm that it would be something possible - since continued or chronic stress causes changes to the adrenals themselves. Interesting find.

Issie

[McBlonde]

The best test for cortisol is at Midnight. Lab value > 7.5 is diagnostic for a Cushing's workup. (midnight when it should be at the lowest level)

[lissy]

I have had high cortisol with A.M checks everything else was within range so they looked no further. I was thinking cushings also with your symptoms but I am no doc!

[Katybug]

Thanks for all the feedback folks! We'll see what tomorrow brings. I'll let you know. Going to print out this thread and do some highlighting.

[Katybug]

Ok...I feel like I'm playing who's on first with Abbott and Costello!

The rheumy wants the endo workup. 4 different endo's have said they won't see me unless I have labs showing an endo prob. I tell the rheumy, she is outraged but doesn't know what tests would give a good, complete picture. We agree I'll see my PCP for him to order tests. In the meantime, POTS neuro agrees that I need the workup. Says he will ask an endo colleague of his to see me if my PCP can't work it out. Also points out I am getting "Cushingoid Buffalo Hump" at the base of neck on spine but could be from the prednisone. Today, PCP agrees with rheumy and neuro, confirms my Buffalo Hump, adds that I also am developing a "Cushingoid look to my face", and says he thinks that getting an accurate set of testing is beyond him because of the complicated nature of my case and the type of meds I'm on. He is also fully indignant at the refusal of these endos to see me. Says to see if I can get in with my neuro's guy. Because we ran late neuro's office was closed so will have to beg for that personal referral tomorrow. Made my PCP promise he would come up with a back up endo in case my neuro's endo falls through. All the while, I am becoming the hunch back of Notre Dame with very squeezable cheeks (IF I WERE A 2 YEAR OLD!)

Should it be this hard to get a flippin' blood test?!

[McBlonde]

Most endos just do the easy stuff.... Thyroid and diabetes.. There is a steroid induced Cushing's... There is a Cushing's board that probably has the most current endos in your area.. The posters are very knowledgeable and helpful on high cortisol, etc. I think the link is http://cushings.invisionzone.com/index.php?