Health h***

[FallynPixie]

I had my first black out when I was 10. I was riding a scooter with my friends, and crashed for no. No rocks or cracks in the rode, but i scrapped my chin as a result. Got up and didnt think about it again. I had a couple more while I was riding my scooter when I was 11, but they didnt happen all the time, so again I left it alone. As my teen years hit they became more frequent, and I didnt have a clue in the world how to tell anyone what was going on with me. Just before i turned 24 I went to my primary care doctor, told her I have black outs, and she told me I was hypoglycemic, and if it gets worse we will go from there. I noticed other things wrong like my stomach has issues, and trouble sleeping, and other pain/joint pain.  I have blacks outs daily, but i carry through the hardest days of fatigue and pain. I've never had a job so when I took 40 hours of volunteering a week, at first it was ok, but i had side effects. Less than 3 months working full time I had a black out that I didnt recover from as fast, it was harder than normal. I made my doctor state I need glucose tabs so I could continue volunteering, since I figured it was just my hypoglycemia kicking me that day. So after all that my primary care finally referred me to an Endocrinologist, like she should have done at my first visit. The Endo ordered a 3 day fasting, and i ended up doing that twice. I luckily found the right person here, cuz the doctor that gave my results for the test said my hypoglycemia was within reason, but it still doesnt explain the blackouts. As I gave him more information, he said that sounds more like "POTS." He explained what POTS and gave me a referral to cardiologist. After 17 years I had an answer. The cardiologist agreed with the Endocrinologist, and the Neurologist couldn't rule it out cuz I didn't have a result with the Tilt Table Test. My primary care doctor had told me she hoped the specialists could help. So when I went back to request a different doctor she thought I was trying to order another test. So I'm stuck at needing to find a doctor who knows more about Dysautonomia. My primary care also said Dysautonmia is a word she hadn't heard in a long time.

 

It was great getting an answer but I'm still at square one trying to find a doctor in the worst place(california) that takes my crappy insurance. My PCDs know nothing and im not sure what to do.

[Pistol]

Most POTS patients also see a cardiologist - check at the major hospitals for a cardiologist who is familiar with POTS. There might be someone listed on the physician directory on this site? Best of luck - finding a doc that knows what to do is one of the greatest challenges of this condition. 

[Bluebonnet08]

A cardiologist is usually a good place to start - you could also check for autonomic centers in CA.  It looks like there is a good one at Stanford, I'm not sure how far that is from you.  The autonomic centers are usually more knowledgable than cardiologists from my experience. 

Have you had a FULL iron panel, including ferritin?  I would definitely insist upon one if you are having these symptoms.  Ferritin needs to be above 50 to see decreased improvement in POTS symptoms.  Anemia and iron deficiency can cause women to pass out.  You can be iron deficient without being anemic.  That's not to say you might not have something else like POTS going on, but I would make sure this is addressed too.  For some reason, many doctors miss this test.  

Total Iron, Iron Binding Capacity, %Saturation, Ferritin

[MomtoGiuliana]

Have you checked our list of physicians here:

https://www.dinet.org/physicians/