POTS and blood loss/donation

[angelab1105]

Hello all!  I am new to your community and thought I'd hit you up for a little help.  It seems that many people with POTS do not know the cause of their syndrome.  For me, this is definitely not the case.  Last October I donated blood for the first time and for a number of reasons, suspect that a "double red" was taken instead of a regular whole blood donation.  Regardless, immediately following the donation, I became very ill.  After friends took me for two emergency room visits, I was hospitalized for three days (less than a week after my donation).  I was very furtunate to have a doctor come to see me who was familiar with POTS.  He gave me the diagnosis.  The description of symptoms was dead on.  A table tilt test later further confirmed it.  Has anyone else ever linked their POTS to blood loss or a donation?  Prior to the donation I walked 4 miles every morning, was active, happy and healthy.  This has been quite a blow...

[lissyk17]

I know this thread is now several years old, but just thought I’d share my experience for anyone else stumbling upon it. I also wonder (but cannot definitively determine) if my POTS symptoms were triggered by a blood donation. I had donated blood several times before, but the last time I donated blood, it was almost as if my body didn’t recover like it normally would and I started noticing POTS symptoms a few weeks after my last donation. When I went into the doctor my RBC count and hemoglobin were still slightly low, just along the border of normal, which is actually pretty low for me as my hemoglobin was normally around 15 in the past! My diagnosis came after the cardiologist I saw had me do a stress test on the treadmill and I was no more than walking at a slight incline before my HR hit the 167 bpm target. I had suddenly developed severe exercise intolerance and raising my arms/being upright caused a huge spike in HR. I took metoprolol for a year or 2 which seemed to help regulate my HR which in turn seemed to help actually increase my BP. However, my HR then started getting too low at rest and I was having constant palpitations when lying down. I am no longer taking any medications and manage my symptoms through exercise, increase in sodium and water intake, and magnesium supplementation, which were all recommendations by my cardiologist. Just like I can’t say for sure what caused my POTS, I also can’t say for sure why it’s improved, but my symptoms have definitely improved since I was originally diagnosed 4 years ago. Most days I am virtually symptom free, and even on my worst days now, it’s usually my HR/blood pressure getting too low and causing palpitations when I’m lying down which I can usually manage by setting our bed’s base at an incline and/or chugging some water and V8. I know there are people out there with way worse POTS symptoms and I feel for you! It’s especially tough with there being a lot of questions left unanswered for many POTS sufferers. As a side note, one of my former HS classmates also has it and recently became pregnant and her symptoms have actually improved in her pregnancy which is interesting. Have you others found any relief since last posting?

[LivingInHope]

So glad you had some help from that!  Of course, one doesn't want to over do the salt, but I don't tend to that way.  

Once, I ate too much salt in foods and gave myself a migraine.

[angelab1105]

LivingInHope, unfortunately, I had occassion to use your salt trick over the weekend.  Friday night was pretty bad, but I remembered what you said and my daughter brought me the salt shaker and a bottle of water.  I was so weak I could barely lift my arms, but incredibly, after a handful of salt and almost an entire bottle of water, it was as if I could feel the strength seeping back into my body.  Amazing!  I used your tip on Saturday and Sunday as well, but didn't wait until I was as bad as I was on Friday before trying it.  The results weren't as miraculous, but I never got to the level of sickness, either.  Great idea - thank you!

[LivingInHope]

A cardiologist I went to in the past recommended pizza to me!  And to my sibling, my current cardiologist recommended potato chips.  But you're right, salt is better for the waistline!

[angelab1105]

Love the salt from the hand idea!  That would be better for the waistline than the potato chip habit I've developed!  :)

[LivingInHope]

I hope you can contact the hospital where they said anemia was ruled out and get a copy of your lab records to see if they were minimalists and only ordered the complete blood count (C.B.C.) or if they actual ordered an iron panel, with ferritin, iron saturation percentage, blood iron, T.I.B.C. (total iron binding capacity) and maybe even transferrin.  

When I was diagnosed with P.O.T.S. via a positive tilt table test, I believe I had iron deficiency at the time.  However, even after the iron deficiency was corrected, I continued to have orthostatic tachycardia (and still do).  I  experienced once where symptoms I believe were worsened because of low iron (lab test showed it) even though my complete blood count was all in normal range.  

Even if they were more thorough than ruling out iron deficiency anemia with merely a C.B.C. back then, you may want to get another iron panel, because even if you have P.O.T.S., if you get iron deficient, it can make symptoms worse.  I got iron deficient again a few years ago, even though I've had a complete hysterectomy and they couldn't locate an explanation with G.I. testing... only that time it actually did knock my red blood count down (though hemoglobin was in normal range).  My tiredness and shortness of breath and I think my tachycardia too were all worse than usual.

While I did turn out to have iron deficiency which was not discovered immediately, I don't know what brought out the P.O.T.S.--- whether it was different medications doctors had prescribed for me, feverfew my acupuncturist had me on or just plain time for it to come out with my genetic make-up.  I was also diagnosed with inappropriate sinus tachycardia (I.S.T.).  My heart one night was racing so much I couldn't sleep with it.

My blood pressure was spiking where I normally had low blood pressure in the past.  My catecholamines and their inactive metabolites, metanephrines and normetanephrines were having a high number here or there.  I had a standing pulse after rising from sleep (while iron deficient) of 162 I recall (now without iron deficiency my most dramatic numbers with rising from sleep are reportedly S.V.T. versus sinus tachycardia).  

I don't notice a 6-8 week pattern, however I do seem to have periods of time where symptoms are worse than others.  And certain dietary things can aggravate symptoms.  Sometimes I notice I am having to urinate frequently with diluted urine and my head feels a certain way and I go to the salt shaker and eat salt right out of my hand to try to correct the problem.  

When I think of my sibling and all the trouble lately and the I.V. fluids a couple of times seeming to help, I can understand why some would want the IV fluids at home like that!  

  

[angelab1105]

Thank you, LivinginHope.  I will check out the sites you mentioned.  I appreciate your help!  
To answer your question about the tests they did for anemia, to be honest, I was so ill when I was at the hospital, I really don't know what tests they ran to rule it out.  I just know that I had looked up the symptoms and had all the ones I could confirm (without testing) and thought that's what was going on.  I kept asking over and over about it and they kept telling me it had been ruled out.  When the doc finally came to see me who actually recognized the POTS, he wrote it down and told me to look it up and see if it fit.  POTS had all the symptoms of anemia I was experiencing and all the ones that I was experiencing that anemia didn't explain.  
Saline IVs do really help with symptoms.  I have read where some people have a port put in and have a bag at night when they sleep.  Tempting, but I'm not sure I want to go that route.  
My POTS seems to be on 6-8 week on and off again schedule.  During the "off" times, I still experience symptoms, but not as heavily and daily as when they are "on".  Is that sort of pattern something you experience?
May I ask if you know how you got POTS?  Especially since you mentioned the low blood volume connection...

[angelab1105]

Hi LivinginHope!  Anemia was ruled out.  That's actually what I thought I had when I first became ill after the donation.  Now I am sure that I went into hypovolemic shock following the donation and that is what caused the POTS.  Hypovolemic shock has four levels to it and given my symptoms after they took the needle out of my arm, I was definitely at a level 3 if not a level 4.  I guess I'm wondering how frequently this happens to others who donate blood.  Lower levels of hypovolemia seem relatively common, but there seems to be very little information on serious long term risks associated with giving blood.  The other thing is, getting rid of the POTS.  If you know the cause of it, is there a way to reverse the damage and stop the POTS?

[LivingInHope]

Have they ruled out an underlying cause of anemia in your case, since your symptoms came on after a blood donation?  Iron deficiency, according to what I've found online, can cause tachycardia, chest pain, dizziness, shortness of breath, Cold extremities, with lowered resistance to the cold and cause regulation of body temperature to be poor, etc..