B12 = 862ng (supplement issues?) - Pernicious Anaemi...

Pernicious Anaemia Society

31,973 members23,121 posts

B12 = 862ng (supplement issues?)

Dan10 profile image
5 Replies

Hi all,

I am a 42 year old male. So, I have just returned from my GP, after an 'urgent' appointment was made for me today (at my request), to discuss my test results. I had the following tests:

Serum 25-Hydroxy vitamin D3 level

Serum TSH level, Read

Full blood count

Differential white blood cell count, Read

B12/folate level, Read

Bone profile

Liver function tests

Renal profile

GFR calculated abbreviated MDRD

Serum fasting glucose level, Read

All came back as 'normal', with my b12 levels coming back at 862ng/L.

However I have been taking supplements. (sublingual - methylcobalamin) spray, although I was only taking 4 single sprays a day, when I have just realised it's supposed to be 4 sprays/ 4 times day. I think. However I have also been taking folic acid supplements. Those results came back normal too. In fact my whole test results read as a Mr Joe Average example, with all results ALMOST being bang in the middle of all level parameter's.

However I have for the past 3-12 months had the following symptoms:

Shortness of breath

Heart Palp's (these were awful at one point, and created serious anxiety, they calmed down and are much rarer now, no idea why)

sore/numb tongue

pins and needles in hands and feet.

Numbness in hands and feet (REALLY bad now, can't feel my hands or feet when i wake up, and it takes a good couple of minutes for them to feel normal'ish)

Shooting pains in my hands/wrists (I'm a carpenter by trade and the past week, this has gotten really bad)

muscle weakness (can't carry the stuff I used to throw around, and keep feeling like i've torn a ligament under the arch of my foot, when I turn or twist too quick, or awkwardly. My grip has weakened, and get pains when i hold tools at certain angles)

pain in my joints (knuckles/elbows/knees - almost arthritic type pains or how i imagine them)

burning sensation in my lower back

occasional localised headaches

dizziness in the past few days

and last but not least, I've had eczema type dry skin on my right foot for about 12-18 months, which i told my GP about and told them i thought it may be dishydrotic eczema, for which they prescribed a cortisone steroid cream (without ever even looking at my foot. Lesson learned, probably don't tell your doc what you think you have, as they won't bother inspecting it and just send you packing out the door after 30 seconds)

I think that's it, I know it's exhaustive but it's hard to know which symptoms are relevant to this/caused by this and which aren't.

I am thankfully being referred to a neurologist, in the New Year apparently (long wait for this apparently :/)

But I feel like my body is SCREAMING out for some intra-muscular b12 injections. Thinking about going privately, as GP, doesn't seem too keen to offer any trial shots.

Any thoughts/opinions/advice welcome.

Sorry about the essay.

Thanks in advance.

Written by
Dan10 profile image
Dan10
To view profiles and participate in discussions please or .
Read more about...
5 Replies
Sleepybunny profile image
Sleepybunny

Hi,

"All came back as 'normal', with my b12 levels coming back at 862ng/L."

Do you know the actual results along with the reference ranges? It's possible that although your results are all "normal" some of them might be borderline at the bottom or top of normal range which could be significant.

I learnt to always get copies of all my blood results after being told everything was "normal" and then finding abnormal and borderline results on the copies.

Access to Medical Records (England)

nhs.uk/NHSEngland/thenhs/re...

england.nhs.uk/contact-us/p...

nhs.uk/chq/Pages/2635.aspx?...

Have you had a ferritin test or a set of iron studies?

labtestsonline.org.uk/under...

Other blood test links

patient.info/doctor/iron-de...

patient.info/doctor/macrocy...

labtestsonline.org.uk/under...

patient.info/doctor/folate-...

Risk factors for PA and B12 deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Link about what to do next if B12 deficiency is suspected

b12deficiency.info/what-to-...

As I guess you are aware, supplementing before being tested may affect the results and can make it very difficult to get a diagnosis of b12 deficiency even if symptomatic.

b12deficiency.info/b12-test...

Does GP know you were supplementing B12 before test?

Symptomatic for B12 deficiency with normal range results?

See Point 5 in next link

b12deficiency.info/b12-writ...

Functional B12 deficiency

Some people can have functional B12 deficiency where there is plenty of B12 in the blood but it's not getting into the cells.

UK b12 documents

Recent emphasis has been on treating symptomatic patients even if b12 is normal range. I suspect with a result of 862ng/L, you'll have a hard time trying to get a trial of b12 treatment even if you are symptomatic.

BMJ B12 article

bmj.com/content/349/bmj.g5226

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

See UK NEQAS B12 Alert in Point 5 of letter writing link above.

Thyroid Disease

Some of the symptoms of thyroid disease can overlap with those of B12 deficiency. I can see you have had a TSH test but other thyroid tests are needed to get a full picture of thyroid function.

Might be worth putting any thyroid results on Thyroid UK forum on HU.

Thyroid UK website

thyroiduk.org/tuk/testing/t...

thyroiduk.org/tuk/testing/i...

I am not medically trained.

Debs_47 profile image
Debs_47

hi i suffer with the muscle weakness and grip issues at different angles, i have ended up doing my own injections which have improved symptoms, i still get pains in my feet more so if i do a lot of walking and cant do the exercises that i used to really enjoy. i have tried turmeric but didnt work for me but i know someone who has come off their meds as turmeric worked for their pain. i was offered cortisone injections in my neck but never took them up just go to physio to help. palpitations are managed by anxiety tablets from dr but still get them at times but feel better. i take magnesium which helped with migraines. hope some of this helps you but you will find it will be trial and error to see what works, i wouldnt wait as long as i did to get your own b12 jabs going.

may61 profile image
may61 in reply to Debs_47

I also fing magnesium oil really works for me for aches and pains Epsom salt foot baths great way to get it into body I agree it trial and error

Dan10 profile image
Dan10

Hi all,

sorry for the delayed reply. Been away for a couple of days. Thank you for your responses.

I shall try some of your recommendations and see how I get on.

FYI Sleepybunny...

Blood count results were:

Full blood count

Total white blood count 5.1 10*9/L [3.7 - 11.1]

Red blood cell count 5.10 10*12/L [4.6 - 6.2]

Haemoglobin concentration 154.0 g/L [130.0 - 170.0]

Haematocrit 0.446 l/l [0.4 - 0.5]

Mean cell volume 87.5 fL [80.0 - 101.0]

Mean cell haemoglobin level 30.2 pg [27.0 - 32.0]

Mean cell haemoglobin concentration 345 g/L [290.0 - 360.0]

Platelet count - observation 248 10*9/L [150.0 - 450.0]

Differential white blood cell count

Neutrophil count 2.2 10*9/L [1.7 - 7.5]

Lymphocyte count 2.2 10*9/L [0.9 - 3.2]

Monocyte count - observation 0.5 10*9/L [0.2 - 1.0]

Eosinophil count - observation 0.2 10*9/L [0.0 - 0.5]

Basophil count 0.1 10*9/L [0.0 - 0.1]

B12/Folate were:

B12/folate level

Serum vitamin B12 level 862 ng/L [150.0 - 900.0]

Serum folate level > 23.4 ug/L [3.1 - 19.9]

Above high reference limit

Serum ferritin level 60 ng/mL [15.0 - 400.0]

and Serum TSH results were:

Serum 25-Hydroxy vitamin D3 level 78.1 nmol/L

<25 nmol/L: Vit.D deficiency, requires replacement

25-50 nmol/L: Vit.D insufficiency, consider

replacement

50-150 nmol/L Adequate Vitamin D status

Serum TSH level 1.07 miu/L [0.38 - 5.33]

Please note slight change to reference range from

08.08.2016

I have been doing some more online research and am concerned it may not be PA after all, but SACD??

Im guessing the Neurolgist will be the best person to diagnose this. Can anyone possibly advise me as to who I would need to be referred to with regards to a specialist in blood/b12 deficiency?? Would it be a haematologist?

And a question for Debs_47, is it daunting/difficult or dangerous to self inject your IM b12?? As I'm increasingly feeling that this may be the only option left to me.

It's a scary concept isn't it, waiting weeks and weeks for results/referrals and diagnosis, when you feel irreparable and irreversible damage is happening to your body on a daily basis :(

Lastly thank you may61, I'll give that a go too.

Dan10 profile image
Dan10

Sorry Sleepybunny, just read your reply in more detail, paying particular attention to "I am not medically trained' So ignore my test result posts. I have however checked out the cobalamin link, and realised I have not been tested for that, so may have to push for that one too.

GP's really don't seem too bothered about the destructive/serious nature or consequences of a b12 deficiency do they, for some bizarre reason. When i first attended my GP, I was told to return in 6 weeks if symptoms did not go away... adding, "that's not a long time in the medical world"... maybe not, but it's a lifetime, when you've read words like irreversible and debilitating.

I sincerely hope things get sorted soon, sounds like I could have a fair wait on my hands though if any of the many stories on here are anything to go by.

You may also like...

B12 supplements or B12 shots?

Hi all, Which is best for me to have B12 sublingual tablets or to have B12 shots? I am felling very...

B12 and teeth/gum issues?

currently is a B12 sublingual spray which I doubt is making any difference. I had a blood test...

Low B12 and issues with screens

continue to take injections weekly and daily 1000mg sublingual B12. However, for the past year or...

B12 issues

could I have some thoughts on my BH test results. I did the second test as recommended by BH. 4...

Blood tests after supplementing B12?

GP and ask for more blood test's (good luck with that i hear you say!) , which ones would still be...