Very high B12 blood results

[AnBee]

Hi all. I am post ET MF Calr2 ASXL and TET2 on Pegasys 90 units per week for last 8 mths. MF diagnosed last November via BMB Aged 64. Had to come off Pegasys last week due to Thyroid being knocked around ( showed over then under active) with severe sleeplessness, bad anxiety and depression, very dry mouth, palpitations and significant weight loss for no apparent reason and always hungry. I had a blood test that has shown B12 at twice the upper limit. In Australia the upper limit is 700 and mine are at 1400. Has anyone any information on why this might be so high? My MPN specialist has taken me off Pegasys for 3 weeks to try and settle the thyroid and then thinking of reintroduction at 45.

[Amethist]

Do you take a B12 supplement, or a multiB vitamin supplement?

[AnBee in reply to Amethist]

I did at the beginning of the year but not for the last few months.

[Amethist in reply to AnBee]

it probably depends on the amount of B12 you took. If you took a high dose, then personally I wouldn't worry about it, as testing B12 after taking supplements is well known to give a "false" high reading, even months after.

If you hadn't taken any supplements, then it would definitely need investigating.

Do you have any previous test results to compare to?

I assume you were low in the first place, as you took some supplements?

Did you feel better after taking them? I certainly did. It has made a huge difference to me and led me down the intriguing path of vitamins

[AnBee in reply to Amethist]

No my readings have always been high but just slightly elevated. The test from June I believe was just over 1400. I have not taken any sups because of these high readings. I was taking an active form of B12 as I have had high readings (within the normal limits) for some years and many signs of B12 deficiency so took active or MethylB sups and the B12 deficiency signs disappeared ie tingling burning tongue, tingling peripherals fatigue and low iron stores

[Amethist in reply to AnBee]

Sounds like you had B12 deficiency then if your symptoms went away with supplementing . The symptoms you mentioned are classic signs of deficiency and it is good that you rectified it. Neurological symptoms can precede haematogical sign by year’s but if it isn’t treated quickly enough they can become permanent. Having read loads of books on B12, I can highly recommend the one by Sally Pacholok. It may help you discover why you are B12 deficient. Also has a lot on understanding the different tests and results and is far more informative than any haematology book I have.

When I queried my own haematologist about B12 it was clear to see how little he understood this vital vitamin, very disappointing.

[AnBee in reply to Amethist]

Methylation or the MFTHR gene is carried by a sizeable portion of the population and aneamia and depression run in the female line of our family. I just assumed I had that and therefore supplemented wth Methyl B. That still doesn’t explain my consistent very high B12 unless the reason is hidden still. Apparently solid tumours esp of the liver can be one cause of very high counts. All my liver function tests are normal

[Amethist in reply to AnBee]

I really recommend you read the book. It explains everything far better than I can and speak to your doctor if you are concerned about your liver.

[Rachelthepotter]

B12 levels in MPNs don’t measure accurately with standard b12 test. Google b12 and PV or MF for recent research.

[Wyebird in reply to Rachelthepotter]

Thank you I didn’t know that

[AnBee in reply to Rachelthepotter]

Hi Rachel. I have googled it and can’t find much! Algorithms? I don’t know. Are you able point me in some directions? TIA

[AnBee in reply to Rachelthepotter]

So you have to test the active form?

[Wyebird]

Gosh my b12 was just above the normal range but nothing like you are experiencing. I do hope you can get sorted soon.

[Bobadog]

Hi Does anyone have experience of hepcidin therapy for low risk PV patients,who require regular venesections,and suffer from iron deficiency.?

This therapy apparently reduces the need for repeated

venesections, and potential further iron deficiency. ?

Thankyou

[AnBee in reply to Bobadog]

I think you are in the wrong thread. It is best to start a new thread with that question

[Bobadog in reply to AnBee]

I am sorry,take care.

[ainslie]

It’s common to have elevated B12 reading with MPN but it’s not a real high reading, best google or ask Haem, there is a way to check real B12 with MPN , I think MPN voice may have Clair Harrison’s info on that