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...
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..
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?
So, they didn't just do a CBC (complete blood count), they did an iron panel when they ruled out the anemia?
Your blood is supposed to replenish itself, erythropoieten being a hormone produced by the kidneys that is considered vital to the making of red blood cells. Bone marrow working properly is also important.
I've seen one article where they talked about something that looked impractical in regards to trying to correct hypovolemia. Aside from that, I think hypovolemia is why so many doctors encourage salt and water intake and why some have to get IV fluids to try to augment the volume in the blood vessels. Some find Florinef helpful.
I felt my blood volume was low, in part because I heard someone say low volume while I was getting an angiogram done, so I asked my primary care doctor at the time if I had low volume, was there anything I could do to increase it? I had that internist tell me this in response (paraphrased) regarding blood volume:
...your blood volume is controlled by ADH/vasopressin from the posterior pituitary gland. When blood volume decreases, ADH is secreted and causes your kidneys to retain more water. If this system is not working properly, you have diabetes insipidus, a condition characterized by urinating copious amounts, getting dehydrated over and over and a high level of sodium in the blood is present. But my blood sodium was normal.
I also copied some info from this website:
which said (paraphrased) many with POTS have low blood volume. Therapies directed at hypovolemia correction and at the patient's autonomic imbalance may assist in relieving the symptoms severity.
Here is the article with the thing mentioned I was referring to which didn't seem practical to me:
It mentions human serum albumin. I don't even know if you can get such a thing outside of a clinical trial or not.
I know I've read where some go into remission who have P.O.T.S.. I personally have had it for a number of years though.
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...
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!
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!
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