When can I stop the B12 and Vitamin D

[tralyn]

I have had low vitamin B12 for a year once a week for the first month and now montlhy I've been on the injections for over a year and it has gone up from 163 to 359. Am I able to stop taking them? I also am on vitamin D for 2 years and this now normal range. Am I able to stop taking that too? Is it possible that since I test positive for ANA but negative for lupus that the positive ANA is what is causing these to be off?

[Gambit62 Administrator]

unfortunately the figures you give above indicate that you have an absorption problem with B12 - the most likely cause is an auto-immune disorder - PA.

Generally people can store large amounts of B12 in their liver and use this to equalise out the levels in their blood. However, the mechanism that allows you to access these stores also uses the mechanism that allows you to absorb B12 from your food, and is the mechanism which led to you becoming B12 deficient in the first place. This means that your ability to absorb B12 from your food has been reduced to somewhere around 1% of what it was before - and it could be much lower than that.

The only way round this is to bypass the gut as a way of getting B12 into you - hence the injections. After an injection the levels in your blood are off the measurable scale and then they fall as your kidneys reduce the excess. If you don't have regular top-ups you will (looking at the above) become deficient again quite quickly.

This is very different from the position with vitamin D - though it is possible that your ability to absorb vitamin D from your food may also have been compromised, and similarly for other vitamins and miners, such as iron and folate.

How are you doing symptoms wise?

pernicious-anaemia-society....

[tralyn in reply to Gambit62]

I am always tired have tons of stomach ulcers. They have found polyps in my colon and stomach. I take meds for that too. I also notice that I bruise extremely easily. Lots of times my monocytes are high. I constantly have protein, bacteria and blood in my urine

[Gambit62 Administrator in reply to tralyn]

suggest you monitor your symptoms in relation to the timing of your shots - serum B12 isn't a good test for managing a B12 deficiency after shots and you need to go by the symptoms so likely that you are being undertreated and really need much more frequent injections. Some of us need really high levels to feel well and have enough B12 getting through to our cells after loading shots.

Some people find that supplements can be quite useful in keeping the levels high as small amounts are absorbed.

[Foggyme Administrator]

Hi Tralyn. A serum B12 level of 359 may be perfectly adequate for those not receiving B12 injections, but it's very low for someone who is. It would suggest that you need more frequent B12injections (perhaps weekly again), especially as you are still having what could be symptoms of B12 deficiency.

It's worth noting that serum B12 levels are meaningless once injections have started - unless the levels are low, and yours are: thismis usually an indicator that more frequent injections are needed. (When on injections levels are usually very high, often well over the top of the reference range). Mine are always over 2000. GP's should assess according to symptoms (symptom relief), not serum B12 levels.

Unless a vitamin B12 deficiency is caused by lack of B12 in the diet, or medications that impede B12 absorption, then injections need to be continued, for life. This is the case for the majority of those with B12 deficiency.

Pernicious anaemia (which causes B12 deficiency) needs life-long treatment.

Have you been tested for pernicious anaemia (PA) - IF antibodies - though 50% of those with PA test negative, so a negative result does not rule out PA.

Incidentally, pernicious anaemia is an autoimmune condition: autoimmune conditions travel in clusters so it’s possible to have more than one autoimmune condition. PA does not cause a raised ANA but the presence of a positive ANA result does flag up autoimmunity as a potential issue....and if you have an underlying autoimmune condition, it’s highly likely that your B12 deficiency is also caused by an autoimmune condition: pernicious anaemia.

A positive ANA result means that autoantibodies are present: these autoantibodies have the potential to turn the body's usual defence mechanisms to a permantly 'on' position, which causes the defence mechanisms to go into overdrive and attack the body.

The positive result will have what's called a titre value (1:40 in gradations up to 1:3600) and the higher the titre, the more likelihood that there is some kind of underlying autoimmune condition. So, the higher the title of your test, the more likelihood that there is some sort of underlying autoimmune condition.

It's possible for a healthy person to have a low positive ANA result but this would only usually be discounted (and perhaps checked again at a later date) if the person was healthy and had an absence of symptoms: this doesn't sound like you. And whilst some of your symptoms may be due to B12 deficiency, in light of the positive ANA test, think it would be unwise to assume that that B12 deficiency is the only cause.

I note you say that you don't have lupus: I'm hoping that this means that you have been referred to a rheumatologist and had the full range of autoantibody tests, since a GP is unable to rule out or diagnose Lupus since they are unable to access the specialised blood tests required. In addition, there are many other autoimmune conditions that need to be tested for following a positive ANA test, not just lupus.

Bit concerned about the protein, bacteria and blood constantly in your urine....not normal, and I bet you feel awful. Can be a symptom of an underlying autoimmune condition, amongst other things. What is your GP doing about this? Constant blood in the urine / frequent infections requires specialist investigation (nephrologist and / or rheumatologist (because of the ANA - a potential autoimmune issue).

Here's a couple of links to information about ANA testing/results:

webmd.com/a-to-z-guides/wha...

rheumatology.org/I-Am-A/Pat... (includes information about other medical conditions that can raise ANA in the absence of autoimmune conditions)

I seem to have done a lot of words about ANA 'stuff'...for good reason. When my GP failed to treat B12 deficiency, then undertreated and withdrew treatment, I applied for a copy of my medical records and discovered that a strongly positive ANA result had been ignored for years. It was only when I insisted on a referral to a rheumatologist that I was eventually diagnosed and treated for undifferentiated connective tissue disease (an autoimmune condition). I suspect that had I received timely diagnosis and treatment when I first needed it, I would be in a much better position than I am now. So...if none of it applies to you, just ignore it. But if it does, it's words well spent 😉.

Other things:

The positive ANA result is not causing your blood results 'to be off', your issues with B12 deficiency, or your previous vitamin D deficiency: these are caused by an absorption issue which can occur for a number of reason (PA, IBS, Coeliac or Crohn's disease, medications, GI or gallbladder surgery etc.).

Think you need to ask your GP about whether to continue with the vitamin D tablets. Whilst your levels may be okay now, if you are on other medications that prevent the absorption of vitamin d, then you will quickly become deficient again. You obviously have an absorption problem and your GP may suggest that you continue with low dose vitamin D on a regular basis.

If you look to the right of the page when you log on (or at the bottom if using a phone) there are three PAS pinned posts which contain lots of links to information about pernicious anaemia and B12 deficiency, causes, treatment etc....well worth a read 😉.

Hope you start finding some answers soon...especially about the ANA and the urine. Post again if you need more support and it would be good to hear how,you get on.

Good luck.

👍

[Sleepybunny]

Hi,

I'm not medically trained.

Are you in UK? I'm asking because patterns of B12 treatment vary from country to country.

"always tired have tons of stomach ulcers"

Have you been tested for H pylori infection which can lead to B12 deficiency and has been linked to stomach ulcers.

patient.info/health/dyspeps...

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Have you been tested for Coeliac disease?

coeliac.org.uk/coeliac-dise...

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies.

B12 websites

PAS (Pernicious Anaemia Society) website

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

B12 Deficiency Info website

b12deficiency.info/

UK B12 documents

If you're in UK, I'd suggest reading these documents

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

bnf.nice.org.uk/drug/hydrox...

NICE CKS

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

Hughes Syndrome

If you have lupus like symptoms, has Hughes Syndrome (Antiphospholipid syndrome) been excluded?

aps-support.org.uk/

[mrpenguin]

You can take a good Turmeric supplement and it will get rid of (greatly reduce) the polyp growth if you take it daily over a long period (This is evidence based). I take the 10,000mg Turmeric from Natures Best. It will also help with inflammation/pain in general. I would definitely look into and investigate if gluten is causing your issues as I had similar problems with polyps & b12, tiredness and bladder infection.

[KimberinUS]

It sounds as if you are in the US considering the frequency of your b12 injections, weekly for a month, then monthly.

Please let us know where you are located as it helps us with giving advice for your area.

Your b12 and D deficiency are similar to my situation originally. Your continued low b12 (359 after having injections is low) indicates an absorbtion issue and your ulcers point to h pylori. It is estimated that 80% of ulcers are caused by h pylori and h pylori is a root cause of a b12 deficiency.

Best of luck and health.