Tzipora Posted December 17, 2011 Report Share Posted December 17, 2011 I think I've been anemic for at least 6 months now but today was the first time anyone actually addressed it. My hemoglobin is at 10 so nto low enough for infusions but it's been sitting at 9 or 10 for a long time.I actually ended up in the ER today from the effects of Verapamil (which I'm now not taking) so yesterday morning I also had a heart rate of 50ish and a blood pressure of 85/50 and my neurologist told me to go get checked out. Took me hours to get a ride and I had been loading on salt and as much water as I could drink so I was doing better by the time I got there but they ended up actually drawing attention to my anemia in addition to the dizziness and orthostatic hypotension/ tachycardia diagnosis I left with. And I got one heck of a migraine from stopping that darn Verapamil.But anyway, I'm wondering this... Anemia can obviously worsen POTS and is probably why I've been so especially fatigued and miserable and even more POTS-y in the last 6 months or so. The ER doctor said that since I'm nto low enough to need an infusion they usually just watch people at my level to make sure it doesn't drop any further. And I do get labs drawn every week because I'm on Total parenteral Nutrition for my gastroapresis... but should someone be addressing my anemia? Would that help my POTS symptoms and fatigue? I'm not at all surprised I'm anemic. I ended up very severely malnourished with crazy low B-12 levels and Folic Acid so the anemia was kind of inevitable. But now my B-12 and Folic Acid is at a good place and my nutrition has been improving a lot with TPN though I have a history of anemia even when I was younger and pretty much healthy. So I'm just trying to figure out how much the anemia is effecting me and my POTS too... Quote Link to comment Share on other sites More sharing options...
lieze Posted December 17, 2011 Report Share Posted December 17, 2011 They need to do an iron panel.I don't think it's true that with a hemoglobin of 10 they won't do infusions.I think they would make that decision more based on your ferritin levels. Quote Link to comment Share on other sites More sharing options...
gertie Posted December 17, 2011 Report Share Posted December 17, 2011 Could you have iron added to your parenteral nutrition or take sublingual iron? My DIL has gastroparesis and isanemic & has been on iron supplements for a long time. Maybe try adding iron & see if you feel better. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted December 17, 2011 Report Share Posted December 17, 2011 My cardiologist really likes to use Epogen as a POTS treatment, but your hemoglobin has to be under 10 in order to qualify. She says that most patients she puts on it see great improvement because it boosts your blood volume an has some vasoconstrictive properties. Quote Link to comment Share on other sites More sharing options...
Tzipora Posted December 22, 2011 Author Report Share Posted December 22, 2011 I just saw my primary care doctor who definitely knows NOTHING about POTS and tried to tell me my entire problem is anemia.... Which is annoying. But she wants me to see a hematologist and I just had my iron checked. So hopefully I'll get the anemia aspect of things taken care of soon! Quote Link to comment Share on other sites More sharing options...
lieze Posted December 22, 2011 Report Share Posted December 22, 2011 Resolving the anemia will help no doubt but it didn't totally solve all my problems. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted December 22, 2011 Report Share Posted December 22, 2011 Leize, how have your infusions been going? Are your levels back up to normal? Quote Link to comment Share on other sites More sharing options...
Maiysa Posted December 22, 2011 Report Share Posted December 22, 2011 I got sick the first few times I took the iron, but my body is getting more used to it. It has helped with the dizziness so much. Of course not completely...but a lot. Also, I missed a few days of iron and I felt really drunk. It was weird, so I didn't realize how much it was helping. My ferritin was down to 1 and they wanted to do a blood transfusion, of course I said No, let me try the iron first. It took a few weeks, but it did help. I hope you are feeling better. Quote Link to comment Share on other sites More sharing options...
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