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Finally scared.... or is this from too much blood drawn?


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So, my husband has really been thinking that I am dying. I keep assuring him that this is how dysautonomia goes, that it's not really life threatening, etc. etc. Somehow most of my doctors are not concerned about BPs into the seventies and collapsing, but I am getting treatment and more testing. I haven't been afraid so far, just annoyed and curious.

 

I saw a new hematologist/immunologist on Tuesday and I really think he is going to figure me out. I still have no diagnosis and am not fitting any really straightforward dysautonomia category, though it's clear I have dysautonomia of some kind... temperature regulation failure, hypotension, tachycardia, and lots more. I think maybe something else, maybe immune, is going on too. I've had endocrine, cardiac, etc. workups and am getting autonomic testing "done correctly" next week. I'm on metoprolol, mestinon, and midodrine for this and generally they have gotten me feeling much better than I did.

 

I only started mestinon a few weeks ago and found it made a big difference in my ability to walk, and it bumped up my BP by 8-10 points once I got up to 60mg TID. The same happened with midodrine... it helped me function and have a better BP.

 

On Tuesday, I had a large quantity of blood drawn for the new doctor, something like 15-20 tubes (not sure but it took forever with many switches of tubes). I'm sure the doctor didn't realize how many tubes worth of blood his lab orders required, and he laid me down to have it all drawn with a butterfly and I did not pass out. I'm not afraid of needles or squeamish, but since I have have had low BP, I tend to pass out during or after blood draws (now I am realizing that this is only a big problem when lots of blood is drawn, which is most times, but I haven't had it done in 6 months and a lot has changed) I started feeling quite a bit worse during the last half of blood drawing, and have not gotten better. I can't sleep and am too queasy to eat, my BP is maxing out 15 points lower than usual on all of my meds, and I just feel horrible. It does seem like I take a permanent turn for the worse every 4-6 weeks and that's what scares me. I do alright for a while and then my old meds are not enough anymore, and my baseline BP goes down for good. I haven't felt this bad since before I was started on any dysautonomia meds. I'm freezing and miserable and just can't do anything, too wobbly to get around. I have a call in to this doctor, and am putting compression stockings on, and forcing broth in, but I have to admit I am getting scared of this being my new life. I could deal with my previous "new baselines" okay, but it's really crossing a line now that I'm not even comfortable lying down, can't eat or sleep on all of these drugs.

 

Does this make sense about the blood draws, or is it a coincidence?

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15-20 tubes does sound like a lot, IMO.  It might not affect a person functioning normally, but it seems plausible to me that it could affect someone who may already have low blood volume and pressure.  The good news is that it sounds like your doctor is trying to get a lot of information.  Hopefully this is going to help unravel what is going on.  Hope you can get back to your baseline and feel better soon.

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I should mention that I was already taking a lot of iron, 325mg 2-3 times daily. I don't eat meat, but my ferritin had been up to normal for a few years (went from 6 to 55) and I was not anemic. I don't know if anything else would help me to replace the blood. Drinking fluids hasn't been helping me feel better. 

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I have frequent trouble with hypovolemia and find that the biggest help for me is saline infusions. I have severe gastroparesis and gi dys motility and we question my absorption, we believe that to be part of the reason I cannot truly rehydrate orally or via feeding tube. Are you getting enough salt? Sodium is esential for the body to be able to retain fluids. Hope you get some answers from all that blood work!

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I will literally eat salt by itself. I have tried up to 8gm per day with no help, but I definitely crave it and my regular diet is loaded. I think my absorption is okay, and the way I see it I see that if I'm not dehydrated, and I am not, my body doesn't hold onto extra water and I just pee it out. I think I need extra fluid, not my "normal" level, if that makes sense.

 

We do believe that my potential hypovolemia was exacerbated by losing all of that blood  I never thought of that as being a risk, but so many tubes were drawn! 

 

The hematologist actually mentioned getting IV fluids today, but his office and suite are so far that I can't drive there alone. I don't have anyone to bring me until Tuesday. He really had no other ideas until all of the bloodwork comes back :( 

 

Since my husband is a cardiology nurse, I want to arrange it so that he can legally give me fluids at home. He wants to do it NOW. Does anyone know about how to make that legitimate?

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I wasn't getting much help from fluids (4+ L) and salt (8-10 g), either, until I started taking some of it as Pedialyte.  I now make my own electrolyte cocktail at home, because it is cheaper. 

  • Juice, enough to get about 20 grams of carbs.
  • 1/4 tsp regular salt.
  • 1/2 tsp. low-sodium salt.
  • Enough water to make 1 liter (or quart) total.

Something about the salt + sugar is different from salt alone, even though I usually get my salt with food.  

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  • 3 weeks later...

I've had this happen to me before and I'm definitely NOT squeamish about needles -- I've done my own draws before.  

It's been awhile since I've had blood draw, so I don't recall how many vials it was.  BUT I was fine for the draw, fine after the draw.   It's when I got up from the phlebotomy chair and started walking for the door that I passed out.   I remember the staff at the lab befuddled as I went through the draw itself fine.   I knew it was hypovolemia, but they couldn't understand why a health-looking 20-something would have this.   I was useless for the rest of the day and still felt rough for the next day or two.  

As far as subsequent blood draws, I've generally avoided them. It's been almost 4 years exactly since my last blood draw, and we only pulled 3 tubes for that one.  There's never been anything remarkable in any of my results for the past ~10 or so years other than false positives.  We already know what's wrong with my body (NCS/NMH, hypovolemia)  and BP/pulse/ECG/SPO2 have been far more telling with how I'm doing. 

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I have a feeling that with my newly positive ANA I will have doctors wanting to draw a lot more blood. I'm starting with trying to make sure everyone has all of the results now that I am seeing 7-8 different doctors.... at least we don't need to run any tests more than once.  Hopefully I'll only need a few tubes drawn most of the time, or maybe I can get some saline replacement afterwards?

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