B12 deficiency with dizziness

[Olive1977]

Hi all

I'm new here but have found the posts really helpful - thanks to all of you out there providing advice. I'm writing to ask for thoughts about how to make sure my B12 deficiency is fully tested and how I can find out the reason for it.

I've been diagnosed with B12 deficiency after experiencing a range of symptoms particularly over the last 3 months including dizziness, brain fog, palpitations, extreme fatigue, and abdominal pain. Basically, after having been very active all my life and running a lot, I had a physical 'crash' after doing a fell run in March and have been off work since then. (I didn't expect not to be knackered but the massive effect of the symptoms has been frightening). After running a lot of tests, my GP focused on B12 - the reading was 142 with what he says a minimum normal to be 189. He feels this is slightly under but not the reason for my symptoms. He set up 6 x loading doses which ended about 10 days ago and since then there has been a small improvement. However, I'm still getting a lot of dizziness and brain fog and I'm getting increasingly worried about irreversible neuro damage.

Last week I asked for more B12 injections on the basis of my neurological symptoms. My GP said with the 6 injections there would be masses of B12 in my system and I should wait for it to take effect. He's following up with a consultant about a possible parasite infection from a previous holiday. He reported that my intrinsic factor antibody test came back negative so he doesn't think it's PA. I am not anaemic either. However I have since read that IF tests tend to come back normal and I understand it's still possible to have autoimmune gastritis that's causing the B12 deficiency?

My GP doesn't think the B12 deficiency caused my crash and he's sceptical about whether B12 injections will improve my symptoms. This is just because of the very sudden crash I had. However, for years now I have been struggling with low energy and insomia.

So my questions are:

1. Is it worth me getting one of those packages through Viapath that test active B12, homocysteine and MMA? Is that even possible given that I have already had my loading doses?

2. Should I ask for a consultant haemotologist referral given the neuro symptoms - if I'm right that dizziness is a neuro symptom.

3. What can the GP do to rule out automimmune gastritis given the IF test? Is it worth asking for other types of tests?

Thanks very much for any thoughts/advice you might be able to share.

Olive

[clivealive Forum Support]

Hi Olive1977 was your Folate level tested?

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Initially, replacing B12 will lead to a huge increase in the production of blood cells and platelets (which occurs in the bone marrow) and can lead to rapid depletion of folate and iron stores; this can then limit the expected recovery of Haemoglobin.

Both iron and folate may be needed so please have these levels checked by your doctor.

You could ask for an MMA test.

Methylmalonic acid is a chemical used up in one of the cellular reactions mediated by B12. If there's not enough B12 in the cell then MMA levels will rise. If they're not high then it means your cellular levels of B12 are OK. High levels of plasma MMA (>0.75umol/L0 almost invariably indicate cobamalin deficiency.

The uMMA test measures the amount of MMA in the urine or blood. Elevated levels of MMA indicate B12 deficiency. MMA is 40 times more concentrated in the urine than the blood, and the urinary MMA (uMMA) is the preferred test over the serum MMA.

I am not a medically trained person but I've had Pernicious Anaemia (a form of B12 deficiency) for more than 46 years.

I wish you well.

[Olive1977 in reply to clivealive]

Thanks so much clivealive! I have added these points to my list of questions for the GP tomorrow. Your advice is much appreciated!! I'm going to ask about my folate, iron and vit D levels and also for a urinary MMA test. Let's see what happens!

[Polaris]

Hello Olive - lot of research has been done into the link between athleticism/overexercising and neurodegenerative diseases, particularly ALS/MND, with sufferers on the ALS site being recommended to take large doses of vitamin B12 injections.

Not only does the latest BMJ research state there is no reliable test, but the Dutch links on the r/h side of the forum state this too. The neurological symptoms you've already described, together with your low B12 result, means it's highly likely that PA/B12 is the cause and should be treated with injections adequately until no further improvement to avoid permanent neurological damage.

Below is an extract from the BMJ research document with useful summary (GP will probably be able to access full document behind a paywall) :

The BMJ research document - peer reviewed and supported by many research papers - states (bottom of page 4 under 'How is Response to treatment assessed' ) that, once b12 is given, the test results don't mean anything as blood levels are not reflective of how effective the treatment is - it is the clinical condition of the patient that matters:

"Cobalamin and holotranscobalamin levels are not helpful because they increase with vitamin B12 influx regardless of the effectiveness of treatment, and retesting is not usually required.":

bmj.com/content/349/bmj.g5226

and under "Who gets B12 deficiency:

"Intrinsic factor is a protein, produced by the parietal cells of the cardiac and fundic mucosa of the stomach. It binds vitamin B12 to allow its absorption through the gastrointestinal tract, by way of a receptor on the intrinsic factor that is specific to cells at the terminals of the ileum. If there is resection or disease of the gastric mucosa or terminal ileum this leads to vitamin B12 deficiency as a result of malabsorption."

The document also contains information regarding frequency of injections for neurological symptoms:

"Standard initial treatment for patients without neurological involvement is 1000 μg intramuscularly three times a week for two weeks. If there are neurological symptoms then 1000 μg intramuscularly on alternate days should be continued for up to three weeks or until there is no further improvement.4 25 In irreversible cases, for example, pernicious anaemia, the treatment should be continued for life. "

.......................

stichtingb12tekort.nl/weten...

"Misconceptions about a B12 deficiency: The serum B12 test is still widely used as thé test to confirm or rule out a vitamin B12 deficiency. However, a normal blood value cannot rule out a B12 deficiency, as has often been shown in scientific medical literature. Serum B12 can be false normal or even false high, while a deficiency is present.

A value above the reference value does not automatically rule out a deficiency and a (slightly) lower value does not automatically mean a B12 deficiency, although a B12 value beneath 150 pmol/L has a specificity of 95% or more. There is a large grey area wherein a deficiency is possible, despite a normal serum B12 value.

By using serum B12 alone, many patients are being missed. Because a B12 deficiency can lead to permanent neurological damage, one should never rely on serum-B12 alone (unless obviously low) and always test at least MMA when a deficiency is suspected. Especially when neurological and/or neuropsychiatric symptoms are present, as they can become permanent without timely treatment.

We advice to combine serum B12 or Active B12 with MMA when a deficiency is suspected for increased accuracy. The problem however is that many physicians do not know these tests (MMA, homocysteine, Ative B12) or do not know how to interpret them. And if they know them, the are considered too expensive to do. Of course the cost of years of visiting doctors, sometimes with very expensive other tests, and years of medication, are much higher.

As there is no ‘golden’ test, patients with clear neurological symptoms, and no other obvious cause for those problems, should be treated with B12 injections. When clinical improvement occurs the treatment should be continued. There are numerous stories of patients who have benefited from B12 treatment, despite normal blood results."

pernicious-anaemia-society....

Good luck for better treatment Olive

[Olive1977 in reply to Polaris]

Thanks so much Polaris for this. I've been reading through the guidance but you have pointed out the specific bits which are most useful and I really appreciate this. It really does back up the need to take into account the symptoms a lot more, and I'll ask more about this and try to get the dizziness factored into the treatment more directly.

[Marz]

Low B12 can also accompany low thyroid - so wondering if you have been thoroughly tested - especially the T3. Exercise uses up available T3 - a hormone needed in every one of the trillions of cells in your body.

Adrenal issues also spring to mind 😊 So many symptoms overlap.

[Olive1977 in reply to Marz]

Thanks Marz - apparently they have done some thyroid and adrenal tests but I'm not sure if T3 so that's another question for tomorrow.

[Marz in reply to Olive1977]

They rarely test T3 on the NHS - sadly as it is so important. Ask for your test results with ranges - you are legally entitled to have copies so you can monitor your health and check what has been missed !

[Olive1977 in reply to Marz]

Well I'll just have to add that to the list of things I've gone private for over the past 8 weeks. It's been a rollercoaster but I'm v lucky to be able to afford (some of) the tests when there's a really long waiting list etc or other reason why it's difficult to get hold of things. Thanks for the suggestion!

[Gibby69]

Don't give up hope-my daughter is an athlete and went from being very fit to barely being able to walk with dizziness and all the other symptoms you describe. She felt no better after the loading doses, now on 2 monthly and after about 6 weeks-2 months she gradually started feeling better. After 4 months she is pretty much back to normal and started to run again.

Give it time for your body to repair then slowly build up your exercise again.

[Olive1977]

Thank you Gibby69!!!! It's been so frustrating and out of the blue, although for a while i had been wondering about my tendency to "crash" every 6 months or so. But it's never been anything like this. I'm so glad to hear your daughter is feeling better and am sending good vibes to her for her next run.

[Gambit62 Administrator]

lots of things can cause B12 absorption problems - and it can actually be easier to rule out other options than prove PA given the limitation of the IFA test. Looking at parasitic infection is one thing to rule out.

Generally speaking B12 deficiency comes on very slowly but symptoms can snowball at the end so you are right to suspect that that may be going on. Folate deficiency tends to be much more rapid.

25% of cases of B12 deficiency present without macrocytic anaemia - so absence doesn't rule out PA (which is a bit of an historical misnomer).

If you have dizziness I'd recommend referral to an neuro rather than a haemo but no guarantee that the neuro will be any more up on B12 than your GP. Same goes for any specialism - but at least referal to a neuro could rule out other things.

This is a link to the BCSH standards on diagnosis and treatment of cobalamin and folate disorders. Your GP can access through the BNF

onlinelibrary.wiley.com/doi...

[Olive1977 in reply to Gambit62]

Thanks very much Gambit62. I went to the GP last week and pressed again for more B12 injections given the neurological symptoms and the GP (locum, not my usual) was unwilling to over-rule the previous decision not to prescribe any more B12. She did however say she would take advice from a haematologist given the neuro symptoms. I'm going back this coming week with the BCSH guidelines, NICE guidelines and information from Stitchtung Tekort B12 to ask for a 3rd time for continuing B12 injections. I'm going to say that if the answer is no from GP then I will self-inject and I'll ask for guidance from the GP clinic nurses on how to do this. I'm unwilling to continue with a situation where my dizziness, brain fog, inability to finish sentences is allowed to continue.