I Want To Find Out More?

[Millerla]

So, I went through a week of random testing at Mayo to be told, at the end of the week, that my "tilt test was positive, so I have POTS". Which is amazing, because I finally have a diagnosis and ways to deal with it.

My issue is that they didn't really test for anything else. Some random blood tests for vitamin/mineral deficincies, a diabetes test, and a check on my hemoglobin. All were normal but my cholesterol(a tad bit high) and my iron stores (very, very low. The number was like a 2 point something). My first consultation with an autonomic specialist, the doctor asked me about my flexibility and had me extend my arm, to which she said "hmmm, your arm does hyperextend a tiny bit..." and nothing about that or possibilities of EDS were ever talked about again.

I'm going back in January to the PRC, unless I figure it all out myself before then. Should I request another appointment? Should I find somewhere else? I live in Minnesota, about 3 1/2 hours away from Rochester.

Also, I only ever saw the pediatric autonomic specialists.(dr. Kornobel and Dr. Kizilbash) would getting into the actual autonomic department help?

[Dizzysillyak]

What are they doing about your iron ? Do they know why ? Imho, it's possible getting that up will help you tremendously. Low iron made my symptoms much worse.

It's common to be anemic if you're a celiac too. Tc .. D

[Millerla]

I'm not anemic, my iron stores are basically non-existant because I eat no red meat or dark greens and have heavy cycles. I am taking an iron supplement, no noticeable difference with that yet though. Also, I've had every possible test for celiac/gluten allergies and I am apparently just fine with gluten.

I've been well tested for most things except for anything to do with dysautonomia.

[Libby]

You're not anemic? That surprises me; most women, even with normal iron levels, seem to be. Hemoglobin needs an iron cofactor (to bind oxygen), so very low iron puts you at even greater risk. You may be on the verge of developing it. Once the iron stores are gone, RBC production slows way down. RBCs have a 3 month lifespan, so eventually that turnover rate will start being greater than the production rate.

If you combine the iron supplement with vitamin C, that might help. It prevents iron from binding to other molecules that you can't absorb and just passing through you.

[kclynn]

Stick with the pediatric autonomic specialists. There are differences between adults with dysautonomia and teens with dysautonomia. How is the exercise going? This can be very successful but start very slowly and work your way up. It really is good to start with conservative treatment. I think you should schedule an appt if you think you need one. You probably have a lot of questions since your diagnosis.

Many people here keep testing because they don't get better but most teens with pots do. I know you feel awful, and it isn't ever easy but recovery is in your future