CLL and Lupus labs

[JerrysGirl3]

on 9/22/23 i had labs as follows :

Blood sodium was low at 132 (was 122 when I was critical in mid July )

Chloride 99

WBC 39.69

RBC 2.66

Hemoglobin 10.0

Hematocrit 29.8

MCV 112

MCH 37.6

Platelets 134

Neutrophils #manual diff 1.98

Reticulocyte absolute .03

Haptoglobin 2.9 ( super duper low!)

I'm showing signs of anemia and no one is helping. Primary put me on folate. I put myself on elemental iron +C as I was having trouble breathing. Was so weak and fatigued. And primary put me on electrolyte salts. This all started when I had to start Zanubrutinib for CLL and hydroxychloroquine for Lupus at the same time. I also was treated in July for ehrlichia. I stopped both meds while in hospital with critical low blood sodium and have stayed off both. Will NOT take lupus Med again!! I can't seem to keep blood sodium number in the normal range. Again. Having both diseases is confusing and a pain in the butt.

[SofiaDeo]

It looks like you might be having a hemolytic anemia. Have you ever been tested for G6PD deficiency, or does your ancestry put you at risk? Some people have gotten hemolytic anemia on hydroxychloroquine, with a G6PD mutation.

[JerrysGirl3 in reply to SofiaDeo]

I agree with what everyone is saying - I just wish my doctors would do something about it! I'm treating myself with vitamins! I have a great liquid vitamin that's high in B vitamins. I can't take it every day as it makes me crazy but maybe twice a week will work. I don't know if that lab has been taken. Still awaiting lupus test results. Lupus doctor confirmed I was anemic and told me to talk to my new CLL doctor I'm seeing in a week!! No one wants to take responsibility for any of my health issues which are so clear to me and everyone in this group. It's maddening 😳

[JerrysGirl3 in reply to SofiaDeo]

I actually found a G6PD result (!) of 12.7

[JerrysGirl3 in reply to SofiaDeo]

So. Is my result of G6PD (!) 12.7 good or bad ? 😳

[CycleWonder]

I don’t understand enough about Lupus and CLL to offer anything but my hope that you find some answers.

[JerrysGirl3 in reply to CycleWonder]

Me too. It's been disheartening that each doctor specialist pushes me off to the next one and won't deal with my labs. I think they are stumped to tell you the truth. I wish they would just say that to me instead of saying nothing. I had one car accident due to bizarre lab numbers and deficiencies causing massive confusion (which when you have it you are unaware of it!) next time I might not be as lucky to survive.

[skipro]

Low sodium usually comes from drinking too much water

Try drinking a can of V-8 a day as this has tons more electrolytes that Gatorade or other electrolytes drinks.

Further, low sodium results in diluting the actual platelet counts, Hbg etc

Good luck and God bless

Skipro

[JerrysGirl3 in reply to skipro]

Thank you. I've cut back on drinking water but I also can't swallow food without drinking and certain meds require water. But yes. I have cut back. Unfortunately I've tried V8 and I don't like it 😳. Im forced to eat so many things I don't like I don't feel like adding another. But I do appreciate your help 😊

[DriedSeaweed]

When my hemoglobin was around 8 I used it as an excuse to eat a large chunk of dark chocolate each day. Not sure if it helped but I enjoyed it.

[JerrysGirl3 in reply to DriedSeaweed]

I'm not sure if I can eat chocolate because of dairy allergy although I think dark chocolate is ok... plus i would probably be wide awake for 24 hrs lol🤣🤣🤣🤣