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Pernicious Anaemia Society
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Vitamin b12 deficient

Hi just wondered if anyone could guide me a bit from where I’m at.

I’ve been feeling really run down for years now, but just assumed it was down to having kids. The last year has gotten a lot worse though. Agonising back pain, exhausted all the time, heart palpitations, and breathlessness. I’ve had so many blood tests and all came back okay. Doctors were puzzled what could be wrong and I could tell I was starting to irritate them.

After doing some research I Requested a vitamin D blood test and they said it came back ‘normal.’

I didn’t trust this and so booked a vitamin test privately and my results were as follows

VIT D - 10.0 ng/mL

VIT B12 - 150 pg/ml

So needless to say I’m clearly deficient in both VITD and VITB12.

My question is now as my doctors appear to neither be interested or very informed, where do I go from here?

How much do I take of each? Do I need injections? There’s a lot online and could really do with any advice.

Thank you in advance!

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Hi OnePlusThree

Most of the members of the forum here will have switched their computers/devices off so, hopefully, you'll get more replies tomorrow.

In the meantime, could you post the complete results, ie your result and include the range. The ranges are different in various parts of the country, and often may depend on the machinery used, hence very important. Once the normal ranges are available, you're likely to get better advice.

Assuming you are deficient in Vit B12 and/or Vit D, you need to visit your GP and explain why you are there, ie that you have had private tests done and they indicate the likeiyhood of deficiency. Your GP SHOULD then request further blood tests on the basis of this. NHS medical staff do NOT (generally) accept private test results but it could instigate a range of NHS blood tests.

Regarding Vit D deficiency, if the NHS results show you to be deficient, your GP will probably prescribe a course of high dose tablets to correct this. After this course is finished, most people are likely to continue with taking Vit D tabs, at their own expense, but at a significantly lower dose. Annual checks thereafter are not unusual

As for Vit B12 deficiency, this is a very different ball game, unfortunately. Many doctors do not understand the importance of B12 and, at best, might offer a one-off injection or, if you're luckly, a course of 6 injections over two weeks followed, perhaps, by 3 monthly injections.

Do you have any idea as to why you might be deficienct in B12? There are many common reasons, being dietary, due to prescribed meds, autoimmune cause (Pernicious Anaemia) etc. It's useful to know why, if at all possible. Some blood tests may indicate PA but they are not reliable although GPs and specialists seem to accept a negative as not PA and positive as being PA and that PA is the only reason for needing injections.

I'ts late now so I'm switching off. I will look out for responses tomorrow, as well as seeing what the normal ranges are for your blood tests.

By the way, did you have Folate and/ or Ferritin tested? It's very important to have Folate tested too, as defiency in this can cause same/similar symptoms. Hopefully, your GP will test these too, along with a Full Blood Count.

Goodnight ;)

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Thanks for the swift reply! 🙂

My results are as follows

BIOCHEMISTRY

BILIRUBIN

7 umol/L 0 - 20

ALKALINE PHOSPHATASE 105 IU/ 35 - 104

ASPARTATE TRANSFERASE 33 IU/L. 0 - 31

ALANINE TRANSFERASE 34 IU/L 10 - 35

GAMMA GT 15 IU/L 6 - 42

TOTAL PROTEIN 72 g/L 63 - 83

ALBUMIN 41 g/L 34 - 50

GLOBULIN 31 g/L 19 - 35

ENDOCRINOLOGY

Syphilis IgG/IgM by EIA

Negative

HEPATITIS "A" PROFILE

Anti-Hepatitis 'A' (IgG/IgM)

Negative

Anti-Hepatitis A (IgM)

Negative

Comment

Hep B surface Ag (HBsAg)

Negative

Hep.C Ab ELISA ( 3rd Gen )

Not Detected

HIV 1 & 2 Abs / P24 Ag screen

Not Detected

HAEMATOLOGY

WBC 5.9 10^3/uL RBC 5.2 10^6/uL

HGB 15.0 g/dL

HCT 38.0 %

MCV 67.0 fL

MCH 23.0 pg

Comment: RBC MORPHOLOGY NORMAL

ESR 32.0 mm/hr

ADDITIONAL TESTS

RANDOM GLUCOSE 111 mg/dL

MAGNESIUM 2.0 mg/dl

ZINC 1.0 mcg/mL

VIT D 10.0 ng/mL

VIT B12 150 pg/mL

FERRITIN 22 ng/mL

Not sure what most of them mean

I’m assuming my Deficiency has come from lack of it in diet and from years of back to back pregnancy and nursing without the proper nutrition, or supplementation. I will be going back to get a methylmalonic acid blood test to unequivocally prove VitB12 Deficiency.

I’ve also had such a terrible back for years which seems to be getting worse and spreading to my neck, nothing has really alleviated it and I’m wondering if this is to do with vitamin d. If it is, is it likely the symptoms I’m having will be reversed upon treatment? or will I have to deal with this pain now because I let things get this bad?

Also how long does treatment for these things take, I know it’s a life long thing to maintain, but when there’s a Deficiency how long until results are expected.

The dosage RE both, where do I start? I’ve seen things in the range of 50,000 iu a day for VITD3!

I may not go to GP for VITD treatment. I don’t think the treatment they give is even VITD3 from what I’ve read, and they clearly don’t understand much if they deemed my levels to be normal. I’m also pretty sure they wouldn’t advise to take alongside magnesium and vitamin k2. Unfortunately don’t feel I’m in the best hands with them.

Thanks to all!

Reply

Supermarket supplements for Vitamin D should fix that problem.

Assuming you're not vegan/vegetarian then B12 at that level almost certainly will require injections. Download this document, used by Hull and East Yorkshire NHS to determine treatment for B12 deficiency.

hey.nhs.uk/wp/wp-content/up...

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Thank you so much! A VERY informative link, very helpful :)

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My neurologist advises that everyone in the UK should take a high dose (5000 IU) D3 supplement every day because it just isn't possible to get enough from sunlight here. It's better absorbed from an oil based capsule - I take Doctor's Best that I bought on Amazon, the normal shop-bought ones are not so good apparently :)

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The NHS recommendation for Vitamin D is 10 ug a day. Taking 500 times seems a bit OTT.

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I'm so sorry, I meant IU, not micrograms! I'll edit the post accordingly. I think that works out at 125 ug, so not quite so ludicrous :) Anyway, it's what the neurology department here recommend and practice on themselves and their families.

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Yes. My experience is that it can be difficult to find anything less than 1000 iu.

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Don't worry, most of us know you meant the often recommended 5000 iu Ktwing 🙂

I take this dose plus K2 Mk7 - important to ensure D3 goes to the bones and not the arteries....

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Thanks Polaris :) Can you recommend a brand of K2 at all? I've been taking magnesium, but not K2...

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This is where I get mine 🙂

oxfordvitality.co.uk/vitami...

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Thank you!

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Hi OnePlusThree

Great that you've posted your results. So, bearing in mind I'm not a doctor (was a nurse, so have no authority on this, of course - just my opinion ;) ) I notice your ESR is raised which would indicate some infection/inflammation going on. I would feel your GP should be following this up with either re-testing or further tests/examination, unless the cause has already been established.

Vit D definitely needs supplimentation as it looks like you're deficient. I've checked NICE guidelines and it's suggested "For the treatment of vitamin D deficiency, the recommended treatment is based on fixed loading doses of vitamin D (up to a total of about 300,000 international units [IU]) given either as weekly or daily split doses, followed by lifelong maintenance treatment of about 800 IU a day. Higher doses of up to 2000 IU a day, occasionally up to 4000 IU a day, may be used for certain groups of people, for example those with malabsorption disorders."

Your GP should know this and treat you, without any doubts.

Personally, since having such loading doses several years ago, I take 5,000iu daily and, on annual check, stay at around 1/3 of the range, so not too impressive. So, I suggest, after loading doses, experiment and find what dose maintains you by having an annual check.

I would suggest your Ferritin isn't brilliant either. Maybe suppliment with some iron tablets from the pharmacy?

Your B12 is low. I didn't see Folate on the tests you've posted. Also, I would ask for Thyroid panel to be included too. If your GP agrees to test MMA (apparantly the urine test is more accurate), ask him to include Homocysteine too. Unfortunately, both these tests are expensive and, I believe, are sent to London (mine were) but yours may be sent elsewhere, or be done locally of course. They take a few weeks to get results.

Do you, by any chance, have IBS, Crohn's disease or Colitis as that could explain poor absorption of nutrients plus raised ESR? Just a random thought ...

It would seem your GP is doing you a dis-service and either see him again and ask for him to do some appropriate testing, to include Folate and to check why your ESR is raised. If he won't, then I would ask him for a 'second opinion' and he should refer you to a hospital consultant but whether that be Rheumatology, Endocrinology, Haematology etc I wouldn't like to say. Maybe Rheumatology might be a good plac to start? ;)

If your GP won't comply, I would seriously suggest changing your surgery, if possible, or definitely see a different GP within the surgery.

Hope this helps ;)

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I have an appointment tomorrow so I have a few questions. I was told my ESR was likely to be due to my eczema which is inflamed a lot. They said they were not concerned as it hasn’t raised since a earlier this year and had stayed the same, my eczema has been flared for a while unfortunately. This or she said it could be related to the back pain I’m having. She said she’s making a note of it and will inform the physiotherapy team when I start but she doubts it’s to do with that.

I feel my iron was too low and I’ve started supplementing with spatone.

I’ve also had problems with my esophagus so this could be why it was raised.

I was told my folate was 3.0 this was back in May. And I was given supplements for 3months. I haven’t been retested as of yet.

I was told my thyroid was ‘normal’ but now I’m better informed I will be asking for more tests and for previous results in order to check for myself. I also had T3 and T4 rested and was told it’s normal.

Long road ahead I suppose. Thank you very much for your help

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Hi OnePlusThree

I do hope you get some positive reaction from your GP tomorrow. Yes, lots of questions. At least your raised ESR can be accounted for, which is great, so you can discount that as being a factor.

It sounds as if you are as prepared for tomorrow's appt as you can be. It will be interesting to hear how you get on. Wishing you good luck ;)

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Your mcv is 67. The range on most labs is 80-100. This and your low mch, normal range 27-33 indicate microcytosis. This indicates an iron deficiency.

You might consider a test for h pylori. H pylori is a chronic infection which over time can cause inflamation beyond the gut.

An iron def usually shows up first as our iron stores are shorter lived than our b12 stores stores. It looks like you may have had his awhile as your b12 is at the bottom also.

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