Confused About All These Tests

[scarfgirl]

When reading this forum, people are always talking about all these tests that I've never heard of/had done. Just glancing at some of the posts on the first page mentions testing things like Chromogranin A, adrenal hormone output, C-reactive protein.....all things I've never had tested. At first I just assumed a lot of the tests were people taking shots in the dark, something I couldn't afford to do but was glad others were doing, but now I'm wondering if I'm missing out on something important that my doctors should know to check but don't. I've had the tilt table test a couple of times, an EKG about 20 times, regular thyroid tests, and recently I did have a Vitamin D test (which I'm grateful the doctor suggested because I was VERY deficient), but that's it. Before I figured out I had POTS I had several other tests, but don't really remember what they were. Now that I have a diagnosis of sorts, doctors never want to test anything, they always have the 'try this med and see let's see how you're doing in a month' approach, and no one seems interested in what is causing my POTS. Should they be? Worse, now that I'm back in GA I've had to get all new doctors. I'm seeing a 'specialist' in Alabama that seems to have a set routine down--I don't think he varies any from patient to patient, and all my other docs are pretty ignorant of dysautonomia in general, just doing stuff whenever I ask them (I hate them all, but you don't get to be picky when you live in the middle of nowhere).

What tests should all POTS/dysautonomia patients have? Both for POTS specifically and for the complications that tend to come with it. I don't want to miss anything that could better clue me in to what's wrong. I have a bunch of symptoms, but no clue whatsoever causes them.

((I'm having MAJOR brain fog right now and my own post seems like babbling nonsense. Feel free to tell me if I'm right.))

[Simmy]

Funny. I've been asking (myself) the same thing for awhile, but I guess I didn't want to seem ignorant in the company of 'experts', and I mean that in a good way because you guys are incredibly knowledgeable and I'm grateful.

But yes, me too - I had a TTT and an echo, along with about 20 EKG's (every office visit with my cardiologist / PotsDoc, always lying down... what's the point?) and every visit is to see how the latest meds are working and maybe tell me about a new one, like the latest addition, Mestinon. Any suggestion to look into anything else is always mine. I haven't had even a blood test of any kind in a year and a half.

I think we're missing something and I'm glad you asked.

[firewatcher]

I think it depends on the doc that diagnoses you. An endocrinologist originally found my problem with a "poor man's tilt test," and he often sees that with endocrine disorders. So I got the endocrine workup. When that bloodwork came in wonky, we moved on to the next specialist who should know why and so on. It also depends on the symptoms you're having. After getting a "final" diagnosis at Vanderbilt (I never got a TTT there either, just another "Poor-man's tilt") most of the testing stopped and everything got dumped into the POTS bucket. I take dDAVP, which requires regular blood testing to make sure that electrolytes are balanced, but other than that I don't see any doc regularly now except my endo. Because my symptoms were so classic for a pituitary tumor, I got a lot of tests.

Some of us are just looking for the cause/root of the "S" (syndrome) in POTS.

[TXPOTS]

When reading this forum, people are always talking about all these tests that I've never heard of/had done. Just glancing at some of the posts on the first page mentions testing things like Chromogranin A, adrenal hormone output, C-reactive protein.....all things I've never had tested. At first I just assumed a lot of the tests were people taking shots in the dark, something I couldn't afford to do but was glad others were doing, but now I'm wondering if I'm missing out on something important that my doctors should know to check but don't. I've had the tilt table test a couple of times, an EKG about 20 times, regular thyroid tests, and recently I did have a Vitamin D test (which I'm grateful the doctor suggested because I was VERY deficient), but that's it. Before I figured out I had POTS I had several other tests, but don't really remember what they were. Now that I have a diagnosis of sorts, doctors never want to test anything, they always have the 'try this med and see let's see how you're doing in a month' approach, and no one seems interested in what is causing my POTS. Should they be? Worse, now that I'm back in GA I've had to get all new doctors. I'm seeing a 'specialist' in Alabama that seems to have a set routine down--I don't think he varies any from patient to patient, and all my other docs are pretty ignorant of dysautonomia in general, just doing stuff whenever I ask them (I hate them all, but you don't get to be picky when you live in the middle of nowhere).

What tests should all POTS/dysautonomia patients have? Both for POTS specifically and for the complications that tend to come with it. I don't want to miss anything that could better clue me in to what's wrong. I have a bunch of symptoms, but no clue whatsoever causes them.

((I'm having MAJOR brain fog right now and my own post seems like babbling nonsense. Feel free to tell me if I'm right.))

You bring up an excellent point. In my opinion, POTS is not really a true diagnosis. It's like saying a patient has a fever. There are many different causes of POTS, and the top researchers in this field have not pinpointed all the mechanisms. I think physicians try to rule out obvious secondary causes such as anemia and thyroid issues. Drugs that have completely different mechanisms are tested on patients until a combination seems to stick. As a pharmacist, I can look at the various medications people are on, and this alone, tells me the causes of POTS are very diverse. Some patients obviously have major problems with over dilated veins, while others are vasoconstricted. Some patients are hypovolemic, while other patients have normal blood volume. I would like to see standing catecholamines, aldosterone, and renin added as standard labs. I do like that Dr. Stewart breaks patients up based on where they are pooling and peripheral resistance when supine.

[Simmy]

TX - Quote: "I would like to see standing catecholamines, aldosterone, and renin added as standard labs."

I happen to be going to my GP tomorrow for an unrelated matter. Are these blood tests something he can easily do, or do I need to go to a lab for that?

Thanks

[TXPOTS]

TX - Quote: "I would like to see standing catecholamines, aldosterone, and renin added as standard labs."

I happen to be going to my GP tomorrow for an unrelated matter. Are these blood tests something he can easily do, or do I need to go to a lab for that?

Thanks

He/she may be able to perform the blood draws in his office if they send them to an outside lab and follow proper storage recommendations. For the aldosterone and renin, I believe you may have to follow a degree of sodium restriction the day before, but check with your doctor. My endocrinologist actually performed these while I was in the hospital along with a formal water deprivation test since I had extreme polyuria. I am getting the standing catecholamines tomorrow and will have to be advised how long to stand prior to the blood draw. Your GP may want to send you to a lab more comfortable running these tests or an endocrinologist, depending on how familiar he/ she is with POTS. Some of the signs that my aldosterone was extremely low were weight loss, salt cravings, hollow and pale face, thirst, and polyuria. Aldosterone is often low in POTS patients, but certainly not all POTS patients, especially not high flow POTS patients. The results may help direct treatment. If you are on Florinef, a beta blocker, or clonidine, your results may be artificially low. These labs are best done pre-medication therapy.

[Simmy]

Thanks TX. I'm at my doctor's office now. I'll speak to him about what you suggested.

[HopefulLady]

TX - Quote: "I would like to see standing catecholamines, aldosterone, and renin added as standard labs."

I happen to be going to my GP tomorrow for an unrelated matter. Are these blood tests something he can easily do, or do I need to go to a lab for that?

Thanks

Hey Simmy with special tests like catecholamines ect it's best to have them done with an endocrinologist and most regular GP's don't even think to run these types of tests to begin with. My internal medicine doctor had sent me for some xray's and blood work and requested a 5-hiaa test but she only requested a random urine screen which is not as accurate as the 24 hour. But when those came back fine I was of course still having symptoms and got my primary GP to refer me to an endo which ordered that same test but a 24 hour urine vs just a random. And she ordered a whole panel of other blood tests and compared them with the urine tests so it can be a bit tricky which is why they have specialists who understand these numbers and know what to look for and what to tests to run based on your symptoms if anything to rule things out that can cause certain symptoms . If you going for any specialized hormonal testing it's best to get them done with an endocrinologist. Because most regular doc's don't understand these special tests and what they actually mean.

[Guest tearose]

TXPOTS, I disagree with you. May I please offer another way of looking at this...Drugs are not always the answer and I understand you are a pharmacist. What about the reactions and side effects and damage of off label uses? My Dad was thought to have PD and the drugs accelerated his neurological decline and only later was it realized he actually had lewy bodies dementia and many of the drugs are now, years later, understood to be contraindicated.

Another example...a dear beloved girlfriend of mine had Lyme the same time I did. She kept pursuing more "drug treatments" wound up so allergic to drugs and sensitive that her total immune response went into overdrive and she died.

Now, I am NOT saying that some drugs are helpful. There are many who respond well and will improve on drugs. I would be interested in knowing the long term effects and how these people fared. We all must take responsibility for our life. I choose to accept my dx and manage it the best I can. I trust more research is being done and pray that they find the right treatment plans that will help restore all of those with POTS/Dysautonomia to good health and function.

[scarfgirl]

Standing catecholamine, aldosterone, and renin. I'll check up on those. Can you tell me specifically what those tests would reveal? Is aldosterone the test that had me misdiagnosed with Addison's, and would my taking florinef mess up that test? Same question with taking a BB and having the standing catecholamine?

Any other recommendations for tests from anybody?

It makes me to see I'm not the only one who's had to take countless EKG's. I'm beginning to suspect doctors need them for insurance purposes, since I keep telling them I've had them and don't need them, and they keep insisting on doing it anyway. Also, is there some rule that says you can't call the doctor that gave me one three weeks ago and get the results from him instead of making me get all sticky again?

[issie]

Tearose,

So, what do you do to manage your POTS, if RX's aren't in the picture? I too, am not a fan of prescription drugs. Of course, you are aware of some of my past histories with antibiotics (from another post). Right now, I'm just upping my salt, using Emergen C and compression garments. I do have to use a pain pill and muscle relxr, due to the broken foot and leg and the severe Fibromylgia and osteoarthritis. Hoping to be able to cut them down soon. Foot is doing better, now. But, other than that and an occasional naseau pill. I do vitamins and herbs and some hemopathy Not really functioning too well, but still living. Would love to find other answers. Didn't do well on 3 different beta blockers or Florinef. Tried Topamax too ---not good. Tried dopamine and Lexapro --used things for Parkinson's. These made me allot worse. The first diagnosis I got was Parkinson's--that's not what it was. Those medicines made me allot worse. Too bad your friend didn't figure that out sooner. I'm so glad I got off those meds. Then the doctor thought I had Multiple System Atrophy, that's when I went to Mayo and got the POTS diagnosis. I feel like I finally have the right diagnosis, but not fully the complete pictrue. Still need more test to narrow down the type, reason etc. I also have Ehlers Danlos.

So......back to my question, what do you do?

[scarfgirl]

Some of us are just looking for the cause/root of the "S" (syndrome) in POTS.

That's it exactly. Having a label for my symptoms doesn't do me any good. I want to know WHY I have these symptoms. I'm willing to treat the symptoms, for now, but I hope to one day find out the reason behind them and treat that instead.

I have questions that doctors won't try and help me find the answer to. For example, could my symptoms be caused by low blood volume, inability of my veins to constrict properly, or something else entirely? Can allergies and inflammation be causing or at least seriously aggravating my problems? Reading these forums gives me questions that nobody will help me answer. Doctors just sidestep my questions and I usually let them b/c by the time I get through the waiting room I'm pretty much a mindless zombie that's doing good to be able to read off the cue cards she prepared the day before.

[scarfgirl]

Standing catecholamine, aldosterone, and renin. I'll check up on those. Can you tell me specifically what those tests would reveal? Is aldosterone the test that had me misdiagnosed with Addison's, and would my taking florinef mess up that test? Same question with taking a BB and having the standing catecholamine?

Sorry to bump my own post, but can anyone answer these question for me? I'm seeing the doctor on Tuesday and need to get all my ducks in a row.

[firewatcher]

Standing catecholamine, aldosterone, and renin. I'll check up on those. Can you tell me specifically what those tests would reveal? Is aldosterone the test that had me misdiagnosed with Addison's, and would my taking florinef mess up that test? Same question with taking a BB and having the standing catecholamine?

Sorry to bump my own post, but can anyone answer these question for me? I'm seeing the doctor on Tuesday and need to get all my ducks in a row.

Standing catecholamines would reveal whether or not you had excess norepinephrine response to standing..........a BB would mess this one up. And you can have overreactions to normal amounts of norepinephrine too.

Renin/Aldosterone would reveal if you had the "paradox" mentioned in Dr. Raj's article where your renin and aldosterone levels are inappropriately low, despite the orthostatic/hypovolemic stress.

Florinef might contribute to an Addison's misdiagnosis since it has steroidal properties, it may diminish your adrenal responses (not sure about this one.)

Honestly, your ANS testing responses to Valsalva, TTT, and cold pressor tests would be more indicative of a "type" of POTS. As to why, some of us may never know......

[TXPOTS]

Kexia,

Yes, taking Florinef will artificially lower aldosterone and a beta blocker will lower renin levels. You can differentiate between POTS related low aldosterone and Addison's by performing a Cosyntropin stimulation test. I saw an endocrinologist for these labs. Like firewatcher said, your ANS testing may have been enough to direct therapy. I really needed these labs. I was clearly hypovolemic and need of further studies in addition to ANS studies.

Just a side note for tearose... I don't advocate drugs for all POTS patients. My point was that in an ideal world it is best to find the underlying cause, if at all possible, before embarking on drug therapy and throwing drugs at patients until one seems to stick. I don't know what you are disagreeing with or where I said all POTS patients should be medicated. This thread is not even related to drugs. Just for the record, most pharmacists I know try to avoid taking drugs. It's a misconception that pharmacists are drug pushers. I think you misunderstood the point I was trying to make which was the medications for POTS often have different mechanisms of action, so POTS patients are a heterogeneous group and patients should be individually treated.

[scarfgirl]

I've never had ANS testing. I don't even know what that involves.

[firewatcher]

After seeing several docs and getting at least three "poor man's tilt" test results, they referred me to Vanderbilt where I had the testing. Since you are in South Georgia, the Mitral Valve Prolapse Center at University of Alabama in Birmingham may be closer. My actual diagnosing doc is an endocrinologist in Columbus, but I have heard there is a good cardio near Montgomery, AL. The tests aren't fun and they have to be done OFF all meds that would effect the outcomes (no beta blockers, depressants or volume expanders.) At Vandy, I had another "poor man's tilt," a cold pressor test, Valsalva test and timed breathing test, all while constantly monitored for HR and BP. The reactions to those tests showed a typical pattern for "hyperadrenergic" responses and POTS. I also had a QSART (sweat test) later to check for neuropathy.

How were you diagnosed?