Benign Adrenal Cyst

[Katybug]

I had to have a kidney stone surgically removed in 2009 before we knew I had POTS. As a side note to all of the sonograms that were done then, I was told I have a small benign adrenal cyst that lots of people have and that they don't affect anything and not to worry about it. But I noticed on someone elses profile that they have one too. Do any other POTSies out there know if they have these? Could these be affecting us somehow?

[sue1234]

I have one on EACH adrenal. I go through testing about twice a year for them, looking at cortisol and adrenaline. So far, the levels are "normal". I always think that they might be producing off/on. Everyone that ended up with a diagnosed pheochromocytoma or a cortisol-producing tumor at some point would have had a small adenoma turn up on a scan.

With having a kidney stone, have you thoroughly been tested for hyperparathyroidism, looking at calcium, PTH and ionized calcium?

[Katybug]

I have one on EACH adrenal. I go through testing about twice a year for them, looking at cortisol and adrenaline. So far, the levels are "normal". I always think that they might be producing off/on. Everyone that ended up with a diagnosed pheochromocytoma or a cortisol-producing tumor at some point would have had a small adenoma turn up on a scan.

With having a kidney stone, have you thoroughly been tested for hyperparathyroidism, looking at calcium, PTH and ionized calcium?

Thanks Sue. No I haven't. My mom and sister both have Hashimoto's so I have been tested twice in the last two year's for that but I don't think anyone has mentioned hyperparathyroidism. I'll look into it. I find it fishy that POTS so often has adrenal ties and I have a cyst sitting on my adrenal gland. I've just gotten to the point that I don't believe in coincidences that much anymore. I appreciate you responding!

[Christy_D]

Through an MRI, I was told my son has a benign cyst on his brain, nothing to worry about they say. And after a full body scan, he has some small cysts on his nerve endings, once again told nothing to worry about. I still wonder, though, how they can be so sure the cysts aren't playing a role in this.

Christy

[Katybug]

Through an MRI, I was told my son has a benign cyst on his brain, nothing to worry about they say. And after a full body scan, he has some small cysts on his nerve endings, once again told nothing to worry about. I still wonder, though, how they can be so sure the cysts aren't playing a role in this.

Christy

I'm with you Christy. I just find that many coincidences hard to believe. If it looks like a duck and walks like a duck...do you ever feel like technology and lab tests have ruled out common sense?

[janiedelite]

ChristyD,

You might want to investigate neurofibromatosis type 1. No one should have cysts inside the lining of the nerves (including in the brain). If you have more than a couple of these cysts, a neurologist should be consulted who knows how to diagnose neurofibromatosis. This illness is not terribly uncommon and most good neurologists should be able to help your son get answers if neurofibromatosis is the cause. It may require CT scans, xrays, biopsy (my brother's had to get send to Harvard where they were able to properly identify the tissue as NF type 1), and/or genetic testing which is a good way to confirm or rule out NF type 1.

Cysts outside the nerves are fairly common and usually benign. Any cyst that is growing inside the nerve needs to be investigated. I have a cyst in my C6 nerve root and it was diagnosed as being fluid-filled with a myelogram and MRI. It was expensive but very important to rule out any other nerve tumor conditions! Best wishes!