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Sjogren's Syndrome Support

Elevated B12


#1

Hi everyone. Does anyone have extremely high B12 levels?


#2

I’m curious why this was tested even. What does this mean?


#3

When I first fell ill, I’d been experiencing vertigo, my wbc count was down to about 1.8 (1,800) and doctors were baffled because I had no cold, cough, fever or any of the other things (haven’t had the flu/cold for over 20 years, touch wood). They ran a whole slew of tests to rule out certain things, among them RA, HIV, Graves, lupus, diabetes etc and I suppose the B12 was to see whether pernicious anemia was my problem. While my father and sister both have pernicious anemia and have to take B12 shots (another autoimmune disease) because of a LOW B12 level since their bodies cannot process it in food, mine was elevated, which points to unpleasant things that I don’t want to start worrying about again…:


#4

Oh and Sjogren’s was positive but no doctor mentioned it to me; I was discharged and fortunately I always ask for copies of my results so I had to read and research and that’s how I know I have Sjogren’s.


#5

That makes a lot of sense. So is the intention to simply monitor you or to do further testing?


#6

Well, I was seeing a gastroent. for the on and off pain in my side and showing him recent blood test results,ct scan results, etc. and he immediately latched onto the combo of low wbc and high mcv that I have, and the fact that I have had it for decades at least. He he seemed to think the need for a bone marrow test was obvious.Immediately sent me to a hematologist, who repeated the tests (that were done 4 years ago) to look into possible reasons for this anomoly of sorts, I guess. Now I almost WANT to test positive for one of these montrosities because if they’re ruled out, it seems along the line of lymphoma or leukemia, based on my readings. So once again I’m waiting for results at the end of this month. I’ve had so much blood drawn in this one week that I feel like I should do it for my profession.


#7

Hi Marsey, was this test carried out straight after your b12 jab, as I have pernicious anemia and I had a b12 shot a couple of years ago that sent mine high because the doctor ran a test a week after the jab.


#8

Hi Tez. I don’t get the B-12 jab; I just tested with a high level of B-12 when I first had to be hospitalized 4 years ago. I’ve never had to take extra B-12 which makes it all the more concerning that such a high level was detected from the blood test.


#9

Marsey I read wrong sorry…have you been re-tested since? because it can sometimes be kidneys, liver but what you eat in general can rise it or vitamin tabs.


#10

Yes I did bloodwork and the liver and kidney results were normal. Did ultrasound which showed gall bladder and kidneys appearing normal but liver ‘heterogeneous’. Did ct scan and was told nothing unusual with liver. Going back to hematologist on Friday about tests for B-12 and other things like folate ‘rule things out’. So that would be the first time since 2014 that the B12 is being checked. Terrified.


#11

Hi all. I got my results back and my pep panel confirmed the Sjogren’s again but also showed that I have a B 12 deficiency (171). So now it seems like I add pernicious anemia to my problems. I’m glad I didn’t take the ppi I was prescribed for acid reflux because I’ve read that that’s a no-no if you have pa. Now I’m still dealing with this horrible chest pain that I’ve had off and on for about three months!. Heart problem has been ruled out. It’s baffling because when I do my 30 minutes of treadmill each day, the chest is fine – no pain. But it gets really bad sometimes. And I’d had practically none of the tingling characteristic of a B-12 deficiency. Tested negative a few months ago for
h pylori. Don’t know what to think.


#12

Anyone get increased alopaecia after starting B-12 shots? Might be a coincidence but after 3 shots, three days in succession, I was horrified by the hair in the comb and the gaps in the front of my scalp.


#13

That’s kinda odd. My rheumatologist & neurologist had both said that most people with autoimmune diseases have a hard time absorbing certina things like B vitamins and Vitamin D. (I am on supplements for both) I hadn’t heard of there being too much. Interesting.


#14

Actually I now am like most people with autoimmune diseases because the test showed me deficient. When I was initially hospitalised in 2014, I showed a reading of 1353 (with 200-900 being the normal range). Go figure.


#15

At least SS keeps us amused with its endless tricks. LOL


#16

Yes the abc of SS: amused, bemused, confused.


#17

Hahahahahahaha. I like that.


#18

Sooooo, if I have to take B-12 shots but my red blood cell count is within the normal range, does that mean I have a B-12 deficiency but I don’t have pernicious anaemia, or does it mean I have the deficiency and could possibly have pernicious anaemia? My GP says I can’t have pernicious anaemia because there’s no deficiency in rbc. How does that work? Both my father and sister have pernicious aneamia but it’s true that I’ve almost always been within the ‘normal’ range, albeit the low end.


#19

I’d be talking to the rheumatologist about that. All I deal with is running low on B12 unless I do supplements. As long as i stay on top of them, I’m good.
No clue about the rest of that but sounds a little unnerving. Can you keep us posted if you get answers?


#20

So how frequently do you generally get the jab for B-12 and how low was it when you first began receiving injections? For my loading period, I had shots for 4 consecutive days and by the third day I had two pretty large bald spots and yesterday I got my second weekly shot. To be honest, I’d not been having any classic symptoms of a B-12 deficiency except the on and off chest pains but I started feeling occasional light-headedness once the shots began. Hopefully it’s just a matter of time. I’ll discuss with my rheumy.