Adrenals

Prolonged stress can cause high dhea

Dhea and adrenals are closely linked - maybe have your cortisol tested.
It doesn’t mean cancer necessarily.

Before I had lyme diagnosis my dr tested my cortisol with a blood test and then the 24 hour urine test.
The urine test showed high levels.

I then freaked out because I had been looking for a reason to why I felt so bad for months - and this prompted several other tests - I saw an endocrinologist and he did a test that had me take a low dose of cortisone in the evening and then test my blood the next morning. It showed everything was fine. I think that was supposed to check if my pituitary gland was working signalling the adrenals to put out more cortisol.
I then asked for imaging of my adrenal glands and there was no tumour found.
Regret having that CT scan now.

Awhile later (couple months?) I did another 24 hour urine cortisol test and it was normal.

I believe that the stress of my pain and worry about what horrible disease I might have caused the high cortisol.

I think I even tested my cortisol a third time.

So try not to get too worried - just ask to be tested to rule out whatever you think it might be - what you’re fearing.

Here’s the test I had

https://labtestsonline.org/tests/adrenocorticotropic-hormone-acth

Oh and I also had an mri of my pituitary gland because I was worried about it.
No tumor was found but my pituary stalk was “deviated to the left.. of unknown significance”

So of course Im left with that to worry about along with the contrast dye they injected into my blood to highlight the small pituitary gland....

I think that LLMDs see abnormal hormone levels in most of their patients, and it's rarely if ever from adrenal cancer. They didn't mention cancer to you as a possibility because, given that you have Lyme, cancer is very unlikely to be what's causing it. My crazy hormone levels freaked me out, so I insisted on an MRI to rule out a pituitary or hypothalamus tumor and an ultrasound to evaluate for ovarian cancer and masses on my adrenal glands. Lots of money, no tumors. But I get it. We're so sick with weird symptoms that are unrelenting, and it's hard not to worry that something else serious might also be wrong. You can have other tests done, for peace of mind, but this falls neatly in the horses category. (In medicine, folks say, "If you hear hoofbeats, then assume horses, not zebras.") Honestly I was sort of hoping for cancer, because sometimes it can be fixed far more easily than Lyme, would be at least somewhat covered by insurance, and would garner a better support system! What a sad thing to admit.

But really, with Lyme, I would look into HPA axis dysfunction or chronic stress (burning up your cortisol) as more likely causes of your test results. Lyme (and the stress thereof) sends our numbers for various hormones all over the place. There's a good multi-hormone panel saliva test from ZRT Laboratory that any decent LLMD or functional medicine doctor should be able to interpret.

“So aside from mild panic, is there anything anyone could suggest?”

I can relate - except it wasn’t “mild” panic - lol
When I first got symptoms - my doc was testing me for a ton of stuff based on what my concern was on that day.

At one appt she decided to have my cortisol tested.
I did a 24 hour urine cortisol test and it was very high.

I panicked and thought I had adrenal cancer... so she ordered a CT scan - nothing showed up.
She sent me to the endocrinologist and he head me do the Dexamethasone challenge - I think that was to see if it was my pituitary gland malfunctioning.
That test showed it was fine.

I still wasn’t convinced and asked for an mri of my pituitary gland.
Regret that because it was dye enhanced.
No tumor found but there was an anomaly : “pituitary stalk deviated to the left of unknown significance.”

Now I have that to worry about!

I redid the 24 hour urine cortisol test that head started this goose chase and it was fine.

I think it was the mental stress along with the bad pain I was experiencing that caused the high cortisol.

Sara - “heterogeneous clivus of unknown significance”

Lol - not sure which one sounds more sinister? Yours or mine.


At the time my imagination got the best of me and I “decided” that there was a tumor pushing on the stalk to cause the deviation...and they just hadn’t seen it.

When I say I think I have PTSD from this journey - I ain’t jokin’

Oops - I hadn’t read the thread from the top

I had already posted my experience - I should compare and see if my memory served me well - or if my story changed... lol