What Tests Should Ask My Doctor To Do

[boymommy3]

I am wondering if any of you can offer suggestions of helpful blood tests or any kind of testing that I could suggest to my doc.

She is very open to helping me and does have some knowledge of POTS, but from what I am reading here, she doesn't really have a full understanding.

[Chaos]

What type of doctor is she? A lot of the specialized testing would need to be done at an autonomic treatment facility as it requires specialized equipment to do...for example the autonomic reflex screening, Qsart, etc. What are you wanting to know? Can you be a little more specific? Are you suspecting mast cell issues? Or are you wondering about what "type" of POTS you might have? Or....??

[SeattleRain]

I second this question. Before I follow up with my cardiologist I'm bringing a list of tests I want done.

If you haven't been diagnosed yet, and depending on your symptoms, it's likely you would want to get a stress echocardiogram to rule out serious heart problems. Past that, basic blood tests that would rule out any thyroid issues, etc would want to be done. I've had all those and more.

I think everyone here is pretty familiar with a Tilt Table Test. Sometimes they will do sitting/standing blood pressure to check for hypo/hypertension.

The first test I'm looking to get done is a Total Blood Volume test to see how much blood's in my body - I want to rule out hypovolemia. I also hope to get an MRI just to make sure everything else is okay..

I'd be interested in knowing what tests you get done so keep us updated, please!

[boymommy3]

HI!

Thanks for your responses.

My doctor is just my regular MD, albeit I could not possibly love her more and cannot express what a wonderful doctor I think she is. She has diagnosed me with POTS by just symptom checking and doing orthostatics in her office multiple times. She did suggest I have a TTT and said that would be the way to know for sure. She started me on a BB in the meantime and it brought my hr down so well that I didn't want to have to stop it to have the test done. She said she was ok with treating me as though that's what I have as long as I am ok with that.

I have had basic blood work ups like a BMP, thyroid labs, that kind of thing. Also checked for Addison's disease (which was negative).

I just keep seeing people talk about all these labs they've had done and all these different docs they see. I also see that a lot of people have underlying reasons as to why they developed POTS and that's not something she's really discussed with me. I tend to think mine is more of a sickness/virus issue. I have had some crazy illnesses over the years. I did have mono really badly in right after I graduated HS and also tested positive for EB (which is where most mono comes from, I believe.) and my last flare-up has come directly after having the flu.

It's just, as much as I love her and think she's great, and am also impressed that she even knew about POTS, I don't think she has the understand that those of you on here talk about. Just wondering if I truly need to seek out a specialist or just work with her and guide her with knowing the right things to check for. My problem right now is that I am not sure what I need to tell her to look for.

[Chaos]

I think it's a matter of how involved you want to get in looking for causes etc. If you're symptoms are controlled and you're doing ok with the meds you're on and you decide you don't want to do the TTT, then maybe that's where you stay for now. If you want to do a lot of your own research and figure out what you think you want to know and who in your area might be able to do those tests , or where you might have to go to get it done, then that's what you'll probably have to do. As I read recently in one of these posts, one of the POTS docs was saying, this is a disorder where pts have to do their own research and keep looking for their own answers. Not fair, but that's the way it is unfortunately.

Your could run basic viral titers if you want to look at that, but most docs I've seen say that they don't see any correlation between viral titers and illness so they never know what to do with that info and basically just shove it back in the chart. I'm going to see a specialist in a couple days to look at that type of thing but am flying cross country to do it as nobody local has been willing to look more deeply at it other than to say "oh yeah it's there."...

Granted I'm not in the middle of a super progressive healthcare area, but we do have a nationally ranked system here but even still, my local docs have really done nothing for me with this disorder other than the TTT and give me a lot of "it's not"__________ fill in the blank. Even when they happened to get a high serum histamine level (which is frankly hard to catch), they just shrugged it off because they didn't know what to do with the info. So personally, I've had to go elsewhere to see specialists in any area where I felt I had issues that needed to be addressed to get the testing done by the people who knew what they were doing and knew what the results meant. Then I come back and spend my appointments with my local docs trying to teach them about the conditions so maybe next time they'll be able to help the next person who walks in with similar symptoms.

Sorry, this doesn't really answer your question, but it's not quite so simple as "ask for this particular test" with this condition. Maybe someday it will be. I sure hope so.