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Cortisol Levels


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Guest thisblows

Wow I learned today that my cortisol levels are through the roof! I've had it tested twice. Once it was 37 and the last time it was 39. Normal range is 5-23. I can't believe my cortisol levels are that high! Not even stress can raise them that much! Now my doctors think maybe I don't have IST but maybe a pitutary tumor or something. Great huh? **** can't they just give me a DX already? Do any of you know if POTS or IST can cause this? I doubt it but I though I would at least ask.

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No, POTS wouldn't cause increased cortisol. The most likely culprit would be a pituitary tumor. Actually, a friend of mine was misdiagnosed with chronic fatigue and POTS for YEARS before they found her to have a pituitary tumor. On a wonderful note, if that's what it happens to be, it's VERY treatable. My friend has since gone back to having a "normal" life and has had two babies since.

Nina

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How is the test done to check cortisol levels? I had a cortisol challenge or something like that about 5 years ago when I went through a 6-week episode of persistent tachycardia but I don't think anybody has checked them since. It is just a blood draw? I will have to ask my dr. if my cortisol was checked during this last episode...practically everything it seems was checked but honestly I don't think cortisol levels were drawn....hmmm.

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Cortisol levels fluctuate during the day, so it is usually a two-part draw. The first draw is in the morning, the second one is 8 hours later.

Look at the Cushing's website for more info (Cushings=pituitary tumor)

http://www.cushings-help.com/blood.htm

Nina

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Guest thisblows

Mighty Mouse...can pitutatry tumors cause a fast heart rate upon standing?? I mean, your friend who was misdiagonsed with POTS and CFS did s/he fail their tilt table test and other autonomic tests?

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She had an inconclusive tilt test. They said there were abnormalities in her blood pressure and heart rate, but the pattern didn't conform to anything they could think of. They basically said they saw she had a problem but weren't sure why.

I'm not sure about tachy being provoked by cortisol, but if you look through the cushings site, it's got TONS of info. It also goes over all the test, what each problem is related to, etc. You might find your answer there.

Nina

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Guest thisblows

Thanks Mighty...gosh I would be so pissed if that's what it turned out to be...pissed but elated! Wait does that make sense? LOL I'd be pissed cuz I had an unnecessary ablation...but elated cuz I would be able to play soccer and be my normal self again. Her tilt sounds like mine...strange...my heart rate only went up 20 bpm and my heart was racing laying down too 140BPM. While mine was not concluded to be inconclusive...they said I passed it...it still was strange. One question...if they labeled her tilt unconclusive then why would they diagonse her with POTS?...I hope she sued the crap outta her doctor! (Sorry...I had to say that...I want to be a medical malpractice lawyer!)

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Her doc diagnosed her based on all her other symptoms...but then the cortisol levels came back high, and she showed up with a prolactin level despite not being pregnant. Nope, no suing involved...

I hope that if it is cushings, that the ablation you had leaves you with no lasting issues.

Nina

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Actually, stress (both emotional and physical) CAN elevate cortisol to the levels you noted. Also, as another poster suggested, cortisol levels fluctuate quite dramatically throughout the day in an typical healthy person. (Morning readings tend to be higher than evening readings, so it's important to view your results in that context.) One or two isolated elevated readings are not cause for concern, though your doctor should probably follow up with more comprehensive testing. (A 24-hour urine cortisol test is more accurate in showing what's going on with your levels than an isolated blood test, which shows only the levels at that moment.)

In my own case, I have had numerous serum cortisol tests with levels beyond the normal range (sometimes quite substantially). I'm a recreational marathon runner, and elevated cortisol levels are not uncommon in endurance athletes.

In short, both physical stress (exercise, illness, etc.) and emotional stress DOES increase cortisol levels, though the elevation should be relatively temporary. That's why it's important to test 24-hour levels, since any of us could have high readings at any particular moment. The 24-hour test will "average" the peaks and valleys and show if you're truly overproducing cortisol.

Good luck.

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I had elevated cortisol levels and the endocrinologist thought that I might have a tumor also, but they did other testing and couldn't find any sign of a tumor. I have always been very underweight, but my weight was even lower at the time this happened. My doc told me to gain some weight to see if that helped the problem and I gained about 4 lbs and that solved the problem. He said in malnourished or underweight people can have hypercortisolism. He didn't explain why, but I was just glad that weight gain solved it! I also just finished a research paper about this same thing and in some of the journal articles the cortisol was in the 40's. I don't know if this helps at all, but I thought that I would pass it on! Good luck!

Jaime

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When my POTS was at its worst I had a 24-hour cortisol test, among it seemed a hundred other tests. My cortisol level was thru the roof. I don't remember the values anymore, but I remember it was significantly higher than the normal range. I guess that any illness could cause this, though. I don't know much about it. I just remember my endocrinologist saying that doctors can't just use one cortisol test, even a 24-hour test, alone, to determine anything b/c cortisol levels do fluctuate so much and are increased dramatically by injury or illness. I am seeing him again this Friday, and I'll ask him about it again.

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Yes, cortisol does fluctuate, and stress definitely has a factor. My friend, however, had multiple high readings...and add that to her high prolactin level, it becomes more clear that there is something unusual going on. They finally did an MRI and could see the pituitary tumor clearly.

Nina

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Better high than ultra low. That is what mine were and it threw me into Addisonian Crisis. I don't have to worry about fluctuations because my adrenal glands are completely destroyed. The only cortisol I have is what I take in pill form.

I have wondered why my POTS is mild compared to almost everyone here. Maybe cortisol has something to do with it. Since mine is totally regulated by what I intake, it can't go out of whack unless I skip doses.

Just a thought.

Edited by Timbo
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  • 6 years later...

Sorry to rehash this old post!

recently i've tested high for prolactin and cortisol (cortisol on a number of times) i did the stim test and my starting cortisol was actually too high!!! though it didnt double when injected, but thats another story!

Nina I am interested about your friend with the pit tumor....what other symptoms did she have?

Im seeing my endo in 2 1/2 weeks, and getting a pit MRI soon.

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Hi prolactin, high cortisol that didn't follow the correct time pattern, and abnormal TTT, but didn't fit POTS or NMH/NCS. She was initially diagnosed with autonomic dysfunction, then that changed to pituitary tumor following seeing my GYN, who said, and I quote: all roads lead to pituitary, you need to get a brain MRI. The next day she had the scan, and i went with her to pick up the films and report--clearly said there was a mass. She responded perfectly to treatment with meds, and got healthy, and eventually had 3 children. ;)

With the high prolactin, she sometimes had breast tenderness/swelling, but rarely had any type of discharge.

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thanks! hmmmm it will be interesting to see if anything shows up on the MRI. I've had a brain MRi which showed nothing, but this one will be specifically looking at the pituitary.

Did your friend have surgery or the meds to decrease the mass?

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She did not need surgery, the meds took care of it all. I will tell you though, that she needed to have her husband bring the meds to her in bed because she got horribly nauseated if she didn't--which they warned her about. She was prepared to have surgery, but like I said, the medication took care of the tumor, which shrunk enough for her to eventually no longer need them, and then get pregnant.

It's important that your MRI be one that's of good enough quality; the MRI's where you're seated upright, or not in the "tube" are generally to poor quality to look for the type of problem they are trying to rule out for you.

I hope you get the answers you are looking for.

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ohHHH the MRI is in the TUBE!!! I hate being in the confined tube and thought my last head MRI (i've had 3) would be my last!!! Thank goodness for that mirror they have you look in to give you the illusion of space! oh and valium....

Oh well.

I see my endo in 2 weeks and im not sure when the MRI is scheduled, still waiting on the letter from the hospital, Ill find out soon enough!

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