What Kind Of Dr Follows You For Your Pots

[MommytoSJEA]

I have noticed that many people see many differnt kind of docs. I was just wondering who everyone sees. By who I mean like a regular cardio, an electro, and endo, ect.

I figure that since Im going to jump head first into this now that I have a dx, Im going to try not to drown while doing it. B/c as some you may have noticed, my Electro *****! Most if not all of these tests that everyone talks about...even simple blood work, I have not had done. Actually I think the only POTS related test I have had done was a TTT. oh wait, and I had a blood volume done. Which was deemed low blood volume.

So..........I just want to be armed with the best info I can when I go to my electro on Jan 12 and tell him where to shove it Im not very happy with him right now!

~Kelli

[sue1234]

How did they do the blood volume test?

I have a cardiologist that monitors with the various testing, HOWEVER, I keep going to an endocrinologist as I honestly feel that is the basis for my POTS. I do have odd endocrinological things going on.

[juliegee]

Lots of folks don't have oodles of tests done. My son's never had his blood volume measured or a 24 hour urine. The cardio at Hopkins just told him he was hypovolemic. Salt, florinef & water helped...so I guess he was :-) I've never had a formal TTT (too scared!) I just had the poor man's variety :-)

The thing that bothers me about your EP is that he has made NO attempt to learn about POTS (as evidenced by his mis-prescribing the florinef.) He jeapordized your health by dangerously raising your BP. What if you'd had a weak spot in one of your veins or arteries? SHAME on him!

At this point, searching for a treatment plan that gives you the ability to function better is most important. Any test that helps that process along is a good idea. Ultimately, searching for the reason behind your POTS will become most important. That will lead you to the most pertinent specialist who will (hopefully!) order any appropriate tests.

For instance, I see an allergist to manage my autonomic problems as I've learned they are mediated by my over reactive mast cells. He orders differet testing than other folks (with a different causal factor) need.Does that make sense?

You've had a very rough go trusting your docs. I'm glad you're posting here and doing your own research. An educated patient is the safest patient. AND, by learning & advocating for yourself you will most likely have a better outcome.

Hugs-

Julie

[MommytoSJEA]

How did they do the blood volume test?

For the blood volume test, I was injected with a small amount of radioactive isotope. ANd then blood was drawn at regular intervals to determine if the amount of blood in my body is appropriate for gender, height, and weight. I also had a Hemodynamic test done at the same time and for that they injected another radioactive isotope 3 xs and they take images with the gamma camera to measure the function of the heart, and circulation of the blood flow and the volume of it.

~Kelli

[kayjay]

I just have a General Internist -who got me diagnosed. I got hooked up with him after and ER visit turned into a week's hospital stay. He is brilliant and weird but he is helping me (even giving his email to me if I need him).

I trust him to refer me to the right people. There is a Dr. listed on this site as a "pots" dr. near me. My dr. knows this but sent me to the Mayo clinic in Min. I hope you can find a Genreal Internist that is excellent. Starting with a "specialist" has never worked out for me. If you can find a General Internist who is really well respected in your area- you will get in to see the best specialists more easily.

Some of the best General Dr's are at teaching hospitals- they have to know a little of everything and have to stay up to date.

Also make sure that you don get used as a lab rat- At Hopkins ( where I saw an endo) and NIH they used me for research and I regret it (at the time I though i had no other options). Now when I go to the dentist- I feel like I can't have any xrays because I had so much in my 20's- Good luck to you.

[JennaC]

I was first diagnosed by an EP, but I'm not very fond of him. He gave me 0.05mg of florinef and said to follow up with him in 4-6 weeks. Since then (November) I've seen a neurologist and will also be consulting with an ANS specialist and a rheumatologist. I'm going to stick with the neurologist for now, as seems the most up to date on POTS.

-Jenna

[MommytoSJEA]

I was first diagnosed by an EP, but I'm not very fond of him. He gave me 0.05mg of florinef and said to follow up with him in 4-6 weeks. Since then (November) I've seen a neurologist and will also be consulting with an ANS specialist and a rheumatologist. I'm going to stick with the neurologist for now, as seems the most up to date on POTS.

-Jenna

Almost sounds like you and I have the same EP....lol! Except mine put me on .1mg 2xs a day and said see you in 6wks!

~Kelli

[JennaC]

Kelli,

I knew to run when he didn't seem concerned that my heart rate goes to 200 within 8 minutes of a stress test. Until earlier this year I was playing a national level sport... I'm so glad someone finally put me on a beta blocker! 10mg of propranolol helps so much... Wish they would have tried that 8 months ago during me first stress test!

Jenna

[dakota]

My daughter had a cardiologist who is nice, but rather unfamiliar with POTS, although he has prescribed the normal initial meds. (He said my daughter was probably the first true case of POTS he'd ever seen.) She then got an EP who doesn't seem to think the propranolol is such a good idea, but it was the only thing that kept my daughter from vomiting when her POTS first hit, so we are not really inclined to eliminate that med. Now I don't really know who she should be seeing.