Meow Posted April 30, 2018 Report Share Posted April 30, 2018 After a large blood draw, I feel a whole lot better. I have POTS and I am suspected to have Stiff Person Syndrome and my antiGAD is high. It always feels like something is in my blood and I have to flush it out with water constantly. And a huge blood draw is just a little bunus that the peeing can't give me. I don't know if this is because the antiGAD is in part being removed. Also, I don't bruise, I don't swell, and I hardly bleed if cut. Quote Link to comment Share on other sites More sharing options...
issie Posted April 30, 2018 Author Report Share Posted April 30, 2018 I found out I have too thick blood. Have 2 genetic factors that make me lean towards thick blood and blood clots. Also had a positive marker for APS at one time. Explains one reason why I do better to vasodilate and why a blood draw makes me feel better. Also I have genetic markers for hemochromotosis (but don't have) and blood draws lower iron levels in this illness which makes you feel better. Quote Link to comment Share on other sites More sharing options...
bunny Posted May 10, 2018 Report Share Posted May 10, 2018 I feel much worse after a large draw, to the point that I'm passing out left & right. The draw itself doesn't bother me -- I've done my own draws before. It usually starts about 5-10 minutes after the draw and lasts 1-2 days afterwards, slowly getting better over those 1-2 days. Ugh. I hate the feeling. As a result, I don't get blood drawn often. I've been at this long enough to know what various things my body does correspond do what the labs will likely show. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted May 11, 2018 Report Share Posted May 11, 2018 Now I always plan on getting a bag of saline after a big blood draw (my hematology visits usually cost 15-25 vials!) because it ruins me for days too. I just can't afford the volume loss. With me it's not the needle either, I'm good with needles and never have issues with IV starts. A few vials drawn is okay too. Quote Link to comment Share on other sites More sharing options...
Szuco89 Posted March 24, 2021 Report Share Posted March 24, 2021 I have thick blood due to protein s deficiency and I also have POTS. My dr put me on a baby aspirin but before that I would get Iv fluids and that always made me feel much better. Make sure you stay really hydrated Quote Link to comment Share on other sites More sharing options...
issie Posted March 24, 2021 Author Report Share Posted March 24, 2021 This was an old post and I had forgotten about it. We did find I had too thick blood. Had issues with Factor 8 and Collagen Binding and a one time positive on APS (so that is a question still). Instead of a blood thinner, I use enzymes to keep my blood thinner. I couldn't do the aspirin due to MCAS (mast cell activation syndrome). But part of my problem was this and I also have to vasodilate my veins slightly and not constrict them. With my subtype of HyperPOTS, this is a different way of dealing with my POTS than the traditional way of doing things with those with lower BP. Mine tends to be higher. Mild calcium channel blocking "type" medicine also helps with dilation of my veins and has been a big help when my alternative things don't work as well. We all have very individual journeys. What works for one won't work for another. Quote Link to comment Share on other sites More sharing options...
lebimas Posted April 4, 2023 Report Share Posted April 4, 2023 Hello @issie, what all do you do for your subtype of hyperPOTS and MCAS besides the mild calcium channel blocking-type medicine (and what's the name of this?) and the enzymatic blood thinner? I'm new to this post-COVID, and am looking to learn as much as I can about what tests to take and what medication options are available. I was just diagnosed with Crohn's a few weeks ago, complicating things for me. Thanks, friend. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted April 7, 2023 Report Share Posted April 7, 2023 Here is a Wayback Machine link for the Vanderbilt webpage quote from near the start of this thread: https://web.archive.org/web/20110210002836/http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=4788 Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.