If you think you may be vitamin B12 deficient – please read for ‘What to do next’

This is a page direct from www.b12deficiency.info

DO NOT SUPPLEMENT at  all BEFORE TESTING – This could skew results and make diagnosis difficult.

 1. Make a note of your symptoms.

Click here to check your symptoms or click here to check your child’s symptoms.

Click here to read about causes of B12 deficiency.

Note anything that relates to you.

There is a downloadable poster which demonstrates some of the conditions which can occur with low B12 or indeed may be misdiagnosed in place of B12 deficiency. You will find this on our ‘Very Useful Links’ page.

2. Ask your doctor to test serum B12, folate, ferritin, and a full blood count.

Please note, it would be advisable to have a thyroid function test too, they share many symptoms! It is recommended that these should be fasting tests so ask for an early appointment. Sometimes doctors are reluctant to carry out these tests, however they can be done privately. For more information on testing please click here.

3. Once your results are back it is very important to obtain a copy.

You are legally entitled to these.

4. Learn to interpret your test results.

If you are symptomatic your B12 level could still show as ‘within range’ this test is known to be inaccurate. Click here.

Please note that if you suffer psychiatric symptoms of B12 deficiency they too are reversible with correct B12 treatment. Psychiatric symptoms can manifest at higher levels than the lower reference ranges of the B12 serum test. In these cases it would be entirely appropriate for your doctor to carry out a therapeutic trial of B12 injections to confirm a deficiency.

An extremely high B12 level without supplementation requires investigation.

These particular test results are important in B12 deficiency;

Ferritin

Folate

Red cell folate

MCV

MCH

MCHC

RDW

WBC

 Click here for excellent information on optimum levels.

 It is important to remember that B12 deficiency cannot be ruled out in the absence of anaemia and / or high MCV. Click here for more information compiled by @b12unme.

 5. If you have results which confirm a deficiency, do not accept cyanocobalamin tablets unless you know that your deficiency is due to a dietary lack of B12. Remember B12 is only available from animal products!

A deficiency, even if caused through a vegan or vegetarian diet, should still be treated by injections in the first instance, in order to build levels fast.

You can also join this support group. Urge your family members to check the symptoms and causes page too, this deficiency could also be affecting your loved ones.

 6. You should be given loading doses by injection. If you have neurological symptoms then your doctor must treat you as per NICE and BNF guidelines these state that you must stay on loading doses until symptoms stop improving, see NICE Guidelines here. You may have to remind your doctor that there is no known toxicity of hydroxocobalamin and that it is used in huge quantities to treat

cyanide poisoning. Once treatment starts you may notice certain reactions during or soon after the loading doses click here for more information. During early intensive B12 treatment potassium levels may fall, causing hypokaelimia, so please increase your intake of potassium rich foods. Many people are not treated adequately enough for B12 deficiency, please see the Scottish Petition here.

7. Your doctor should adhere to these guidelines but sometimes this doesn’t happen. The BNF (British National Formulary) Guidelines state how Hydroxocobalamin should be administered and each practice has a copy of this book. Register here and print off section 9.1.2 to show your doctor if they are non compliant. Nerve damage takes a long time to heal that is why there is no limit on the administration of B12 injections in those suffering neurological symptoms. Four injections per year will not heal nerve damage, they will keep you alive but deterioration will continue!

8. Ask your doctor/nurse to teach you how to self inject.

This will save you and your practice time and money, if you have neurological symptoms you could be injecting every other day for months. Please click here for the NHS injection guide.

9. If you are B12 deficient and it is not due to a dietary lack of B12 or due to a parasite or other curable forms, you will require injections for life. In these cases, ask you doctor to write this in your notes.

10. If your results show that you are low in folate your doctor may  prescribe a higher dose folic acid tablet than the 800mcg that is available over the counter. Your serum level should be at the upper end of the range. Some patients cannot tolerate synthetic folic acid and therefore would require supplementation of the naturally occurring form of folate please click here for more information on this.

11. If you are low in ferritin you will require supplementation. Iron supplements come in tablet and liquid form and as an infusion. Your doctor should advise what is best for you here and monitor levels accordingly. Please note doctors do not routinely test for haemachromatosis (iron overload). My local lab has a reference range of 10 – 450, the optimum level here would be around 80 -100.

12. A good B complex will be required alongside your injections as all the

B vitamins work together. Make sure the B6 in the B complex is under 60mg. Please note, the folate contained in B complexes and multivitamins is commonly folic acid. Please see point 10 above.

13. In some patients potassium levels can drop with increased B12 loading doses. Your doctor should keep an eye on this and you can help yourself by eating potassium rich foods.

14. If you doctor feels that you are not B12 deficient based on ‘within range’ results you must push for other tests. Click here.

If you have neurological symptoms and a doctor who is non compliant you must assert yourself, and take someone with you who can support you.

15. Your ferritin and folate levels will require periodic monitoring. It would be pertinent for your B12 levels to be monitored in order to ascertain that you are able to metabolise your injections. Iron must be kept at an optimum level and not become too high. Once B12 treatment has commenced B12 levels may remain high but it is the symptoms which are the marker for your treatment. Do not let your doctor stop your injections if you have a malabsorption problem and there is a mistaken belief that your levels are replete.

www.b12deficiency.info

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