Tests for Endocrinologist

[Gena]

SEE MY ADDITIONAL POST FURTHER DOWN IN THE THREAD REGARDING THE TESTS THAT MY ENDO HAS NOW ORDERED. I'D APPRECIATE ANY INFO YOU MIGHT HAVE ON THESE TESTS. THANKS!

I am going to see an endocrinologist on Wed. of this week. I have had a fairly good work up at Mayo, and I'm not really sure the endo will be able to do much more. HOwever, I wanted to get everyone's input as to what kinds of tests I may want to suggest to this doctor??

One of my primary concerns is having my kidney and thyroid functions checked and my sodium/potassium balance checked.

I also want some further testing on my adrenals. At Mayo they did a 24 hr urine catachelomine (sp?) test, and it was normal, but I've read their are other more accurate tests.

I also have an elevated ANA (for several years) and not sure whether that needs to be addressed or not.

I would appreciate input as to what kinds of tests a good endo should do.

Thanks everyone in advance for your time.

[MomtoGiuliana]

Gena

If you have had elevated ANA, you might want to be seen by a rheumatologist, too.

Always good to have your thyroid function tested, as at least 10% of women in the US have hypothyroidism and it is the most common autoimmune disease, or one of the most common. I have had Hashimoto's since 2000. Hopefully they will do a whole panel and not just TSH, as that can sometimes be misleading. Also, there is a test for Hashimoto's antibodies. I had that back in 2000, to confirm the exact diagnosis.

Sometimes I find it useful not to suggest a lot of tests to a doctor and let them make the call, at least the first time around. It depends on the doctor, but some really take offense and can be even less helpful as a result. Instead, perhaps focus on your symptoms and your questions.

I hope it is helpful.

Katherine

[Gena]

Katherine,

Thanks for your input. Just want to let you know that I don't plan on just handing over a list of tests to my doc and saying, "here, run these tests please", but I do want to at least know the kinds of tests people here have had so I can maybe ask him if he thinks having particular test might be helpful. I appreciate the info on Hashimoto's and the thyroid suggestion. My aunt and grandmother both had thyroid problems.

I also want to know what kinds of adrenal function tests there are and what's most accurate. Or any other types of endo tests that may give some insight into my wonderfully wacky body!

Thanks.

Gena

[RunnerGirl]

Hi, Gena! I second Katherine's suggestion about the importance of a FULL thyroid panel, including possibly a test for thyroid antibodies - which can show up before any real changes in thyroid function as measured by TSH and free T-4 and T-3.

Regarding adrenal gland testing, there is a test that is considered more accurate (less likely to generate false positives and false negatives) than the 24-hour urine catecholomine test you underwent. It is called the Plasma FREE Metanepherine test and it is used exclusively to rule out/in pheochromocytoma. If you have a lot of episodic hyperadrengic symptoms (tachycardia, sweating, anxiety, high blood pressure, etc.), it MAY be a good idea to ask for this test. I find it interesting that Mayo docs mostly still use the 24-hour urine test rather than the plasma test, since Mayo's lab is one of the few in the country that process the plasma free metanepherine test. In fact, Mayo processes the plasma test for commercial labs like Quest and Labcorp. As far as I know, only the NIH and Mayo process this test. Point being: if you don't have pheo-like symptoms, it may be a waste of time and money to ask for the PFM test. But if you DO, it might be worthwhile.

Good luck with your appointment! Let us know how it goes!

Best,

RunnerGirl

[calypso]

RG and Gena,

Just wanted to say that I had the plasma free metanephrine test and I think you guys might remember that my results could not be quantified because I had an "intefering substance." I since figured out what that was -- I was taking amino acids (L-carnitine) during that time and that was the only supplement I was taking aside from a multivitamin, a beta blocker & baby aspirin. So that must have been the substance that interfered with the test.

Gena, you might want to ask about interfering substances if you take this test and are taking supplements, which I am thinking maybe you are, since you're into natural health.

Amy

[RunnerGirl]

Hi, Amy. Yes, I do remember quite well that you had the 'inteferring substance' result on your PFM test. That's quite interesting that you were able to implicate L-Carnitine as the culprit. I know NIH says only Tylenol interfers with their assay, but I wonder if they've just never come across patients on amino acids. Again, it's very interesting information to have. Thanks for sharing!

BTW, were you able to be retested off the L-Carnitine? Or did the doc not think it was necessary?

Hoping you are feeling well these days,

RunnerGirl

[calypso]

RG,

I ended up doing a 24-hour urine -- actually, two of them. Both were normal. I lugged around those jugs for so long that once it was time to go in the toilet again, I was, by habit, holding it and looking for that big orange jug!

I think my endo figured the test took so long to process (send to Mayo, wait for results, etc., etc.) that it might be faster and easier to do the urine. At least easier for him ...

Thanks for the well wishes. I actually am pretty status quo these days. I feel like I felt a little worse a couple months back.

Amy

[MomtoGiuliana]

Gena

I *know* you are a particularly diplomatic person! Just had to give my 2 cents on that b/c I have made the tactical error of asking directly for a range of specific tests and getting a pretty strong negative response from a doctor. It's unfortunate, but many doctors don't see their role as that of health PARTNER. Anyway, we have all discussed this at length many times!

I was just reading this link and thought you might want to look at it in relation to your question:

http://dinet.ipbhost.com/index.php?act=ST&f=1&t=571

Have you had the ACTH (whatever it is exactly!) challenge test to test for cortisol insufficiency? I have had this test done by an endocrinologist and it is a standard test you might want to have done. The discussion in this thread pertains to this and the finding of low cortisol in relation to insulin? I didn't read a lot of detail, but it looks interesting.

good luck with your appt!

Katherine

[Gena]

Thanks Katherine, Amy and Runner Girl for your great suggestions. Katherine I'll look at that link when I get home from work tonight. I have not had the ACTH test, so that's something I'm interested in.

thanks again,

Gena

[Gena]

Just an update to let you know I saw the endocrinologist last week and here are the tests he ordered (which I'll do next week)...if anyone knows more about these tests and if they are abnormal, does your treatment of POTS differ any?

Cosyntropin Panel

Serum Aldosterone and plasma renin activity

Free catecholamine and metaneprines

24-hour urine (and then underneath this, he wrote volume, creatine, sodium, aldosterone) I was told by the lab, that after turning in the urine they also draw blood for this, but not sure what exactly they're testing in the blood?)

He also ordered some basic blood tests like a comprehensive metabolic panel; a "Hgb Alc" test that measures my blood sugar level average; and thyroid T4, free: and TSH. Oh, and a urinalysis.

I looked up some of the above tests on the internet to gain more insight, but still confused on some of it! When I went to Mayo, they did not do the Cosyntropin panel. I had the 24-hr catecholamine test at Mayo, but didn't have the blood drawn in conjunction with it, so I'm confused about that. Anyway, hopefully these tests will shed some light on my adrenal functions. Any insight into these is greatly appreciated.

[Ernie]

Hi Gena,

The only one I know a bit about is the Renin and Aldosterone which are BP hormones. They help control blood volume.

Ernie

[futurehope]

Hi, my cosyntropin stim came out all right. It shows that your adrenals respond to the pituitary hormone which normally stimulates them. I also had a more sensitive test called the Insulin Tolerance Test which is not usually given to adults, much less to people who have a normal cosyntropin stim test. I responded but in a less than ideal way to this stimulation test. The only reason I was given this is that the endocrinologist is VERY interested in POTS and was willing to investigate me further for causes. He tried to treat me with additional adrenal hormone, but I could not tolerate the heartburn it caused. He has had success in other POTS patients with additional adrenal hormone - very little amounts such as 20 mg in the AM and 5 mg more at 1 PM which simulates how the body produces the hormone cortisol.