New Here - High B12 968ng/l Folate24.... - Pernicious Anaemi...

Pernicious Anaemia Society

31,756 members22,884 posts

New Here - High B12 968ng/l Folate24.0ug/l

VegB12 profile image
12 Replies

Hello

My wife was diagnosed with Fibromyalgia in 2011 and have had Low B12 and was given some jabs in 2011 She is 48 Years old.

Her Last blood test was showing a High B12 at 968 and Folate at 24 and the doctor just ignores our requests for B12 Jabs even though she feels tired all day and has aches and pains in feet to the extent that I cannot stand for more than 5 Mins before the paid becomes unbearable

Have done MRI and several other tests but Doctors called it Fibromyalgia and put her on 10mg Amitriptyline to help her sleep.

I have a referral letter to get Active B!2 test at St Thomas Hospital and will post the results

The Vit D3 Level was down to just 5 and after supplements its now at 154

From the FBC

MCV 61.9

RED BLOOD CELL WIDTH 15.9%

MCH 19.7

MCHC 319

Any comments will be appreciated as the Doctors not listening anymore

VegB12

Written by
VegB12 profile image
VegB12
To view profiles and participate in discussions please or .
Read more about...
12 Replies
Ctb567 profile image
Ctb567

It looks like her MCV is low, did they measure her ferritin or iron? If you have an iron deficiency then both these will be low.

VegB12 profile image
VegB12 in reply to Ctb567

Ferritin was done 87.4 - Doc Prescribed Iron tablets.

Poppet11 profile image
Poppet11

I agree. But I would get them to check her iron rather than her ferritin. This is simply because they will only do the ferritin if given the option and that can be very misleading.

There is little point to have active B12 test with such a high serum B12, active B12 test is only of use in so called grey situations, where serum is under 500, but symptoms are present. Usually there is a correlation with high serum B12 and high active B12..

VegB12 profile image
VegB12 in reply to

She has been taking 5mg B12 daily and hope this works. Just read about Active B12 and as Doc says B12 is normal and nothing to be done I think active B12 may throw some light on B12 Absorption by the Cells

VegB12 profile image
VegB12

Thank for the Responses - Serum Feritin was 87.4 - Range being 20- 300 - Doc prescribed Iron some months ago. Will wait and do Active B12 Test as Doctor thinks B12 is normal -

Gambit62 profile image
Gambit62Administrator

Really sorry that you are struggling with your GP.

If you are based in the UK then you could try pointing out to him that the NICE guidelines on B12 monitoring state that regular monitoring isn't considered necessary unless there is a risk of non-compliance and the B12 deficiency occurs ... which is because high results after supplementation don't really mean a lot and there aren't any known downsides to having high B12 ... though there are plenty of downsides to having low B12.

cks.nice.org.uk/anaemia-b12...

The justification section is based on the need to ensure that B12 is kept at high levels.

Unless you are absolutely certain that the deficiency was caused by diet then it must have been caused by an absorption problem (which would fit with the vit D problems). As such all stopping your wife's B12 does is allow the absorption problems to take over again and cause another round of deficiency - with all the health consequences that has.

Although B12 can be stored in the liver it's released to be re-absorbed through the normal mechanism, so if that is caput it isn't going to be effectively recycled.

There are some exceptions that show a high serum B12 but serious B12 def, see:

Spurious Elevations of Vitamin B12 with Pernicious Anemia

nejm.org/doi/full/10.1056/N...

MariLiz profile image
MariLiz

Hi VegB12, has your wife ever had her thyroid function checked? Just a thought, as these seem to go hand in hand. I have been diagnosed with under active thyroid, fibromyalgia and low B12! Might be worth asking the GP to check? Good luck, and I hope you get some answers and help . MariLiz

VegB12 profile image
VegB12 in reply to MariLiz

@mariliz

Thanks for the response - I will ask Doc to check Thyroid

VegB12

morebeans profile image
morebeans

I'm with MariLiz - get your wife's thyroid checked. My endocrinologist believes there is a big overlap between hypothyroidism and fibromyalgia. This led him to prescribe Liothyronine (T3) in addition to the Thyroxine (T4) usually prescribed for hypothyroidism and, as a result, my fibro symptoms have improved hugely as well as my hypothyroid ones. My blood tests showed that I had 'subclinical' hypothyroidism, which means I wasn't far out of the 'normal' range, but there's a lot of controversy around what is considered to be normal. Have a look over on the Thyroid UK part of Healthunlocked for more info. You'll see that lot's of folk there are B12 deficient, too.

VegB12 profile image
VegB12

B12 Test Update 18 March 15 after B12 Jab - Serum B12 >2000! Folate 20

My wife just had her B12 Serum Test and after ajab was >2000 and Folate was 20. She still has the aches and pains and Doctor say's B12 is high.

I am very concerned about the position and have asked Doctor to carry out Thyroid tests and to look at why Serum B12 is so high at >2000 and Folate at 20 - Why is the body not utilising the B12 in the blood?

For anyone needing B12 but Doctor will not prescribe - you can get private B12 Injections in London from £55 without Doctors referral - Just Google B12 Injections London - I know its expensive!

VegB12

You may also like...

high level B12 984ng/L

requested to see me again yet my B12 levels are too high and my white blood cells are low the...

High b12 with injections

daughter had her b12 tested (again) on the day she had her injection, (before jab). She was unwell...

B12 deficiency with High Serum B12?

indicative of B12 D) which have left her GP stumped. Her Serum B12 is 762 and folate is 9.8, so...

New here and looking for advice/reassurance on b12 injections...

surgery saying I'd need b12 injections - I wasn't offered an appointment with a doctor to discuss...

Active B12 Test result high 256.0 pmol/l

old and my active b12 test result came back as 256.0 pmol/L ( reference active b12 range 25 - 165...