What test for the adrenals?

[Ernie]

Hi,

I just learned that my brother's adrenals were twice the size of normal adrenals. I was wondering if any of you know how to measure the adrenals and what tests can be performed on mine to find out why I have so much adrenaline?

Ernie

[morgan617]

a cat scan or mri would show abnormal adrenals. the tests are varied and numerous. i know i produce too much adrenaline, but my adrenals are fine on mri and so far labs have been normal. what is your brothers diagnosis? the adrenals sit right on top of the kidneys, and are actually pretty small if normal. morgan

[Ernie]

Hi Morgan,

My brother had high blood pressure, arythmia but the one that is interesting for us is POTS and NCS. He died 3 months ago and we gave his body for research on dysautonomia. Doctors are wondering if there is a link between enlarged adrenals and POTS. This is why I would like to be tested because I have EXTREMELY high catecholamine levels when I stand and faint.

I know most endocrinologist specialise in thyriod problems and diabetes but where do we go for adrenals problems?

Thanks

[RunnerGirl]

Ernie:

Did your doctors rule out pheochromocytoma in the case of your brother? And what about you? I assume since you know you have high catecholomine levels that you've been tested for pheo, yes?

I would suggest contacting the NIH. They are presently running a clinical trial on something called 'pseudopheochromocytoma' - basically for people who exhibit symptoms of pheo, but who do not have the tumor. (As an aside, the docs an NIH insist on a relatively new test called the PLASMA FREE METANEPHERINE TEST to rule out pheo, since 24-hour urine tests are known to render false-positives and false-negatives.) There several doctors working on the protocol, including Dr. Goldstein, who I know has evaluted several folks on this board. My understanding is that people with this so-called "pseudopheochromocytoma" are often found to have adrenal hyperplasia - or enlarged adrenal glands.

If you didn't want to go the NIH route, there are some endocrinologists who do specialize in pheo and other diseases of the adrenal gland (Cushings, Addisons, etc.). But, given that thyroid disease and diabetes are much more common, it is sometimes difficult to find these docs! If you happen to be anywhere near the Baltimore/Washington DC area, I can provide you with the name of a good endo who knows pheo and adrenal gland issues quite well.

Good luck and feel free to e-mail me directly if you need any other info on either the NIH or my local endo.

Best to you!

[spirlhelix]

Hi,

I just learned that my brother's adrenals were twice the size of normal adrenals.  I was wondering if any of you know how to measure the adrenals and what tests can be performed on mine to find out why I have so much adrenaline?

Ernie

<{POST_SNAPBACK}>

Hi, Ernie

I'm sorry to hear about your loss. It is great that you and your family are contributing to our understanding of these little-understood conditions, with his help.

I'm trying to find a good source for this information (ran across it on the internet and now I can't find it again!)--but there is actually a theory that AD can lead to calcification of the adrenals and eventually adrenal tumors, responsible for causing Conn's syndrome or Primary Aldosteronism.

One phase in this process is believed to be hyperplasia (overgrowth of adrenal glands). This would show up on a CAT scan.

This progression is evidently seen frequently in those with severe sleep apnea.

If your brother was experiencing this problem, he may have had uncontrollable hypertension, regardless of the medications he was on. The only one that would help would probably be Aldactone, which blocks the receptors for aldosterone. Do you know if they ever prescribed Aldactone, Spironolactone, or Inspra for your brother?

I don't wish to be overly inquisitive, but can you share with us the cause of your brother's death?

Thanks again for your willingness to contribute to our understanding of these conditions.

Warmly,

Pam

[Ernie]

Hi Pam,

I don't really know which medication my brother was tried on for his hypertension. I just know that nothing worked even in massive doses.

We don't have a clear cause of death because he was the first to give his body to science with this form of POTS so they have nothing to compare to.

Ernie

[spirlhelix]

Hi, Ernie

So far, I have heard nothing that makes me think he could not have had primary aldosteronism. You don't know whether he ever had a heart attack or a stroke?

Can you describe the health problems people have in your family; are strokes a common cause of death?

If you would like to talk to a group of people, many of whom have periodic paralysis, a history of uncontrollable hypertension, and adrenal hyperplasia (like your brother had), you can contact us at:

http://health.groups.yahoo.com/group/hyperaldosteronism/

There is a very kind, helpful doctor who runs the list, Dr. Grim. I am sure he would be happy to discuss your family's situation and point you to someone who can help you get the proper testing to see if you have a similar problem to others in the group.

Warmly,

Pam

[Ernie]

Hi Pam,

Thanks for your help.

My brother had a heart attack a few years ago and he had a stroke 6 months before he died. He had an enlarged heart.

My brother also had POTS and NCS.

We don't know for sure if he died of consequences of POTS or something else.

A few of my relatives also had strokes, heart attack, diabetes, POTS and NCS.

We rarely have cancer.

Ernie

[ramakentesh]

just as an aside, people with Mitral Valve Prolapse Syndrome and POTS are reported to exhibit hypersensitivity to adrenaline - despite often having normal plasma volumes of these hormones.