A New Twist?: Greetings fellow sojourners! As... - CLL Support

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A New Twist?

Jungle-Jim profile image
10 Replies

Greetings fellow sojourners!

As previously stated, I was diagnosed with CLL in Feb. 2020, and am in a Watch & Wait status. Yesterday, I went to my GP (General Practitioner) for my usual 6-month check-up and my blood panel revealed the following readings of concern: Potassium 6.0; Thyroid Stimulating Hormone 0.080. According to the Mayo Clinic, these values are alarming and require "immediate treatment." The Doc's office called and asked me to come back in for another blood test (today) - and sked an appt for Oct. 22 to discuss thyroid issues. Only last month, my blood panel results with the oncologist showed that my potassium was 5.48 - that's alarmingly high, but the oncologist didn't even mention it.

Have any of Y'all had a similar revelation, and could it be related to CLL? Thanks!

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Jungle-Jim profile image
Jungle-Jim
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cajunjeff profile image
cajunjeff

Jim I do think high potassium can be related to Cll and also to hemolytic anemia, an autoimmune immune disorder related to Cll. Are you seeing your hemoglobin levels go down?

There are many other reasons for high potassium. If it were me I would want a sit down with my doctor to find out the cause and what will be done to correct it. Good luck to you.

Jungle-Jim profile image
Jungle-Jim in reply to cajunjeff

Thanks Jeff - my hemoglobin is 5.7 - according to my GP's lab, that (barely) qualifies as "pre-diabetic." Gosh-doggit, the "hits just keep on coming!" I'm beginning to realize that CLL is not a cut-and-paste" disease... it appears to be multi-faceted and varies (considerably) among the afflicted. At any rate, I'll see the GP on Tuesday and see what he has to say.

cajunjeff profile image
cajunjeff in reply to Jungle-Jim

Jim, are you sure it’s 5.7? That’s exceedingly low and it would be hard to function without transfusions with hemoglobin that low.

Very low hemoglobin can be associated with hemolytic anemia where our body destroys its own red blood cells. That’s called hemolysis. A byproduct of hemolysis can be high potassium. If you have a very high lymphocyte count, that can relate to high potassium and can trigger hemolysis.

I had hemolytic anemia and transfusions when my hemoglobin dropped below 8.

All this is mostly over my head. I would go have a talk with my doctor if I were you.

Jungle-Jim profile image
Jungle-Jim in reply to cajunjeff

Hi Jeff - I may have misunderstood your question(?), here's what I was referring to: HEMAGOBLIN A1C- HGBA1C 5.7 HIGH (Normal Range - 4.5-5.6 (%)).

cajunjeff profile image
cajunjeff in reply to Jungle-Jim

ada.com/hemoglobin-levels/

Jim, your hemoglobin might be fine. The only reason I was curious is that high potassium in cll can relate to hemolysis where our hemoglobin drops.

Cll can also cause false readings of high potassium as well. Its confusing, but here is an article that discusses it:

aacc.org/science-and-resear...

Newdawn profile image
NewdawnAdministrator in reply to Jungle-Jim

I think you’re referring to the blood glucose test Hba1c Jim which tests your glycated haemoglobin levels for diabetes purposes. 5.7 is a reasonable result for that test! 😊

Newdawn

Jungle-Jim profile image
Jungle-Jim in reply to Newdawn

Tx Jeff and Newdawn - just when I thought I was coming to terms with the CLL diagnosis, life throws me another curve ball! I'll be chewing on at least one of my knuckles until I get to see the Doc on Tuesday... and depending on how that goes, may have no fingers left on Wednesday. From what I've read (Mayo Clinic), hyperkalemia is a 'killer' (literally). One last thought - I don't know if I'll need treatment for the CLL in the future, but am concerned about any hyperkalemia drug I may(?) have to take now.

Psmithuk profile image
Psmithuk in reply to Jungle-Jim

I had a high potassium result which was queried by my consultant. My blood is normally taken at the GP surgery, so she asked me to have a test there in the hospital, which in fact was within normal limits. Apparently the delay between surgery and path lab was causing it.

I don’t know any numbers so this may not be relevant in your case, just thought I’d mention it.

Cx

Jungle-Jim profile image
Jungle-Jim in reply to Psmithuk

Thank you PSMITHUK - I suspect that CLL (a multi-headed monster) is somehow lurking behind the mask of this latest development. One can't help but wonder what is next as the disease progresses.

I hope you're able to stay safe there in the UK as COVID resurges!

Psmithuk profile image
Psmithuk in reply to Jungle-Jim

Thanks, Jim, doing our best. Holed up in Wales' lockdown from this evening for 17 days. It’s best for us, but I am getting a bit fed up now!

Stay safe and keep your fingers crossed 😀

Cx

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