What Tests Should I Have Done?

[jump]

Hello all,

I've finally worked through my ridiculous health insurance deductible, so I'm considering seeing my PCP again to see if I can get more information about my POTS and possibly get more relief for symptoms.

In March, I had a TTT and a 24-hour holt-monitor test through my cardiologist. I had had a healthy echocardiogram two years previously so they didn't redo it. From this I was diagnosed with POTS and given and beta blocker; everything else I've done (mostly lifestyle changes) I've learned about through my own research.

My concern is that I read about how certain tests should be run to "rule out" certain causes of POTS; like adrenal testing, testing for Addison's disease, testing for food allergies, and testing for Lyme disease. My doctors didn't have me do anything beyond the two cardio tests. They seem to feel certain I have no underlying heart conditions and I tend to agree with them as the BB has sorted out most of my rhythm issues and has helped with the tachycardia.

So my question is, what tests do you think are the most important as follow-up to diagnosis for POTS? Are there some that will narrow the diagnosis or help with symptom management? Right now my biggest bothersome symptoms are excessive thirst, chronic chest pain, digestive discomfort, insomnia and fatigue. My doctor is caring and open to suggestions but she doesn't have a lot of background information on dysaut.

What tests were most important or helpful to you?

thanks!

jump

[Guest Sandy Sims]

The one that led to my cure has been a glucose tolerance test WITH insulin levels showing my hypoglycemia/pre-diabetes. Metformin fixed this and everything else.

Another was a sleep study--I showed up with apnea--even tho I didn't snore. Treatment here has also been helpful.

Others that showed up positive and actually led to something that helped are catecholamines and vitamin d and b-12 defeciency testing.

Also showed up postive on other autonomic tests done at Cleveland clinic--but drugs prescribed for high pulse, high adrenal levels, and low BP did no good. My guess is this is becasue I went into shock each night from low blood sugar--went down into a near coma after meals with high blood sugar--and also had adrenal surges from smothering from sleep apnea that drugs --luckily--didn't stop from waking me up.

Hope this helps,

Xoxoxo

Sandy

[EarthMother]

I'd also test for thyroid anti-bodies. It's different from the standard TSH or even free T4 that they may run. But a test specifically to find the antibodies that indicate auto-immune thyroid disease.

Good luck in your healing journey.

~EM

[jump]

Thank you both! I'm going to take your advice -- those sound like things that apply to me as well.

[firewatcher]

Jump,

The one that has showed the most for me were the complete blood count (CBC with differential platelet) and Complete metabolic panel (14). It showed the consistently elevated red cell count and hematocrit (dehydration) and the screwy kidney function. My endocrinologists keep testing everything. I also had a lung function test done to rule out or confirm a previous diagnosis of asthma (I don't have it, it is just hard to breathe when your hr is 180+ ) If you are having menstrual issues, have your hormones tested, it is amazing what hormones can mess with!

[jump]

Firewatcher (and others who might know),

What does a consistently elevated red bloodcell count mean in relation to POTS? For two years I had to have a CBC every few weeks due to a completely different medical problem that's now resolved; in all of those tests, my RBC's always came back elevated. I asked my doctor about it and she said "oh, that's nothing." But they were always consistently high by quite a bit. Is this significant?

thanks,

jump

[firewatcher]

Jump, I don't know yet. My PCP says that it is an indicator of chronic dehydration (possibly hypovolemia?) In my reading, I've come across many references to "chronic hypoxia" as the cause for an elevated red cell count: that means a chronic lack of oxygen to the brain and kidneys. I also have the low GFR, high creatinine and increased lung gas-exchange (diffusion capacity) that points to that. My chemistry panel comes close to someone living at high altitude. My one clue is that when I was on the dDAVP and clinically OVER-hydrated, those numbers came back to normal. Another theory is that since my cycles are all screwed up, I am not bleeding enough to drop the red cell count (that is why women have a lower reference interval than men.) That is one of the many questions that I have for Vandy. Maybe I can tell you in a week!