Counsel of perfection

[Dewbuc]

You consult a GP with symptoms of deficiency, including nerve damage, and have a serum B12 of 217.

What investigations and treatment would you think optimal?

[clivealive Forum Support]

May I ask what the range <from - to> was for the serum B12 result Dewbuc ?

[Dewbuc in reply to clivealive]

The range is 200-900 at his surgery.

[clivealive Forum Support in reply to Dewbuc]

The "best or most favourable;" (I had to look up what "optimal" meant) treatment from the doctor would be for him/her to try to find the cause for the "low" B12 level, checking on diet, previous surgical procedures, medications, family history, any autoimmune diseases etc etc. and looking at the patient not just at the computer screen.

I'm not a medically trained person but I suspect that with the above scenario the patient would be told that the level is "within range" or "Normal" and told to go home.

[Dewbuc in reply to clivealive]

Looking at the patient !?! I'm not sure this is an integral part of today's consultations!

[clivealive Forum Support in reply to Dewbuc]

Mmmm is that "tongue in cheek" Dewbuc ?

When I was diagnosed with diabetes two years ago I asked my (then) doctor (the senior partner) to examine my feet - he refused. He never touched me at all - not even to take my blood pressure.

My "new" doctor is completely different and it is she whom I have "persuaded" to allow me an increased frequency of B12 injections after over forty years of four weekly jabs of cyanocobamalin that I'd been on since 1972. The previous "one size fits all" doctor refused to vary the prescription claiming that the return of neurological symptoms in the run up to the next injection couldn't be anything to do with the P.A. because I was getting the B12 jabs.

[Dewbuc in reply to clivealive]

I've just removed my tongue from my cheek!

I'm glad you're now getting better care.

[Dee215 in reply to clivealive]

My doctor has said exactly the same thing. I had the loading dose of B12 a month ago (6 injections in two weeks). The symptoms have returned. Dr did another blood test and said your levels are high now so if you have symptoms it can't be the B12. And he cancelled the three monthly ones I had been told I needed. So no treatment at all now

[clivealive Forum Support in reply to Dee215]

If you haven't already, join the PASoc and ask their help.

[wedgewood in reply to Dee215]

A totally ignorant GP ! That's really outrageous ! That happened to me , so to avoid further trouble, I self- inject ! It's very liberating and I feel well again .

[Sleepybunny]

Hi,

1) I'd expect to have folate, ferritin, full blood count (FBC) and MMA, Homocysteine and Active B12(holotranscobalamin)

b12deficiency.info/b12-test...

b12deficiency.info/what-to-...

2) I'd expect to be asked questions about my diet and if diet was excluded as a reason for B12 at lower end of range, I'd expect to be given an Intrinsic Factor Antibody (IFA) test to check for PA. I'd also expect doctor to know about Antibody Negative PA.

stichtingb12tekort.nl/weten...

3) Due to neurological symptoms, I'd expect to be referred to a haematologist as outlined in BNF Chapter 9 Section 1.2 and in BSH Cobalamin and Folate Guidelines

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

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

And also a neurologist....

4) I'd expect a detailed family history to be taken due to possibility of conditions with symptoms that overlap with those of B12 deficiency eg Coeliac disease, Thyroid disease and tests ordered if appropriate.

5) I'd expect loading injections straight away ...at least an injection every 2 days for as long as symptoms continue to get better as outlined in BNF for those presenting with neuro symptoms.

In an ideal world after loading injections, I'd expect to get maintenance injections at the interval that gave me the best relief from symptoms but this only happens rarely in UK, so the very least I'd expect is injections every 2 months .

[Dewbuc in reply to Sleepybunny]

Wow! Thank you so much for your comprehensive advice.

I just phoned my niece only to discover her level was tested 10 days ago and is 90! She has been given low dose oral replacement! Her mother has been on B12 50 mcg daily for as long as she can remember!

[Marz in reply to Dewbuc]

Have they been tested for PA ? - it seems to run in families .....

I had ileo-caecal TB and had several operations over a 22 week hospital stay which included a hemi-colectomy. I was not told of the need for B12 injections. That was over 43 years ago - and over 3 years ago I started having weekly injections here in Crete. Had spinal surgery 10 years ago for alleged stenosis - which may have been SADSC - who knows. My B12 level was always around the 300 mark which I do believe was not high enough for me. I also have Crohns and Hashimotos

However at almost 71 I swim miles in my pool - I live in Crete - I teach yoga - walk my dog and enjoy a glass of wine or two. I can buy B12 OTC here with the syringes for pence - as you know it is prescription only in the UK - and thyroid medications are also OTC for just over a euro. 258 GBP's in the UK. I do now need to present a prescription for my T3 as there have been on-line companies selling it on - but still at a cheap price. That has been blocked here in Greece and is causing untold issues in the UK. Still available from elsewhere !

There are many well informed people on this forum who say that a level of the one you mention is fine. However I am sure that if someone is fit - yes then it is fine - but if there are other health issues presenting then they too must be considered as part of the picture. Am sure I do not need to tell you that

Prior to my TB diagnosis - I was told that my erythema nodosum in both legs was a possible allergy to cabbage - and there is worse - but too delicate for the forum !! I thought my diagnosis of old hockey injuries was nearer the mark - hey ho !!

[Dee215 in reply to Sleepybunny]

Please may I ask what you would do if you got NONE of those things, except the loading dose, then because your B12 levels were high got told you don't need the three monthly injection so left with nothing at all?

[fbirder]

I would expect a test for MMA and, perhaps, holoTC (active B12).

I would expect a referral to a neurologist.

I would hope for a trail of B12 injections.

[Dewbuc in reply to fbirder]

Thank you so much

[Leigh33]

In my area that would be low as the range was 249-990, what is the range? My level was 127 and given 5 loading injections then ment to be every 3 months, but my GP has put it to every 4 weeks, Gp also put me on 100mcg of b12 daily, just waiting to hear what the neurologist tells GP is best treatment as I saw one on Monday, tho he did say life long injections.

[Dewbuc in reply to Leigh33]

Thank you. I hope things improve for you.

[Galixie]

Unfortunately, as you can see from the previous posts, there are a number of directions testing can go. What we really need is something similar to the schillings test (which is no longer available) to first determine if a patient is having absorption problems. (The active B12 test is attempting to fill that gap, but it is not widely available.)

Then we would need to determine the cause of the problem. Such as gastric atrophy, helicobactor pylori, parasites, drug interactions, diet, and autoimmune disease.

There are so many possible things to test for that it becomes a question of how important the investigation is if the treatment is the same. Obviously h. pylori and parasites would need to be dealt with if found. But if a doctor tested for all of the above problems and they all came back normal even though the patient has low B12 and symptoms of deficiency, what then is the diagnosis? (This is something I've basically been through. I initially tested positive for parietal cell antibodies, was told I have PA, then later tested negative for both parietal cell and intrinsic factor antibodies and told it must not be PA after all.)

I feel that the fundamental issue is determining whether or not there is an absorption problem, because if there is, injections are the most effective treatment and should be offered right away. It is torturous for patients to have to go through every test on the planet looking for the cause of their deficiency before they are offered any treatment for it.

[Dewbuc in reply to Galixie]

Thank you for your helpful advice.

[Marz]

Would you consider adding Folate - Ferritin - VitD ? I mostly lurk on the Thyroid UK forum and we find on a daily basis that people with low B12 also have other low levels. As you know Folate works with B12 in the body - and from looking around my granchildren the young seem low in Iron and Ferritin - VitD too.

[taka Administrator]

Optimal... Hmmmmm...

I would expect a history be taken including asking about eating habits especially whether B12 containing foods are eaten (eg vegan? / veggie what doesn't eat much dairy?), any digestive tract issues and questions about whether relatives have various autoimmune conditions etc.

I would also hope other bloods would be taken to rule out other things that may have similar symptoms to a B12 deficiency eg Thyroid problems, iron deficiency anaemia, coeliacs, diabetes as well as the usual full blood count if not already done. Folate should definitely be checked. Possibly also a Vit D test too...

I would expect that the BSH guidelines would be followed... especially Fig 1 and 2. pernicious-anaemia-society....

Providing there are not dietary reasons for low B12... If the result of 217 is below range for the area then B12 injections need to start ASAP every other day until no further improvement. If 217 is above the bottom range but there is a strong suspicion of B12 deficiency then further tests need to be done (eg MMA and / or homocysteine) and every other day B12 injections started while waiting for these results and also to see if there is a response to B12 injections. I would also expect an anti-intrinsic factor antibody test to be done too either way (not that this is a great test!).

You may also be referred to a haematologist and a should be referred to a neurologist too to investigate the nerve damage. If it is suspected GI issues may be behind the low B12 results (crohns / coeliacs etc) then a referral to a Gastroenterologist may also be appropriate.

Testing for H. pylori wouldn't go amiss either.

Sadly we don't all get optimal treatment...

[Dewbuc in reply to taka]

Thank you so much.

[Gambit62 Administrator]

I'm not sure that I would necessarily be looking for other tests - after all tests have costs and also take time. Think a proper clinical evaluation is really what is needed

Assuming that serum B12 at 217 means that a full blood count has been done, and has probably included looking at other possible conditions such as diabetes and thyroid (though let's not go into problems with testing for thyroid :))

So, in the circumstances described above (but not necessarily in this order):

- if existing: review history of previous B12 levels.

- review full blood count - signs of macrocytosis or, particularly if indicators of iron deficiency, RDW being abnormal

- review diet to genuinely rule out diet as a cause of deficiency - but that means a realistic evaluation in light of the fact that RDA for B12 is very low and the fact that B12 is stored in the liver means that a temporary abstinence isn't going to have caused a deficiency

- evaluate if there are any other known conditions that have an overlap or for conditions that could lead to a B12 deficiency, eg gastric surgery that could have affected ileum, coeliacs, crohn's or stomach issues that could be due to low stomach acidity

- review medical history and current medications for any that are known to cause problems with B12 deficiency, eg metformin, use of PPIs

- review symptoms and also how far back symptoms can be traced, even if they aren't thought to be related - B12 deficiency can develop over years or even decades so symptoms can go back years or decades - sudden onset would probably point to folate deficiency rather than B12 deficiency

- ask about family history - not specifically around PA/B12 deficiency but other conditions that could be related to B12 deficiency eg histories of depression, strokes and heart attacks, balance problems, dementias

- not assuming that symptoms are down to folate deficiency if folate deficiency is also present, and exercising appropriate caution before prescribing high dose folate whilst B12 deficiency is a possibility

- tests for balance

- potentially tests for possible absorption problems - especially if there are indicators of other minerals and vitamins being low - though don't think these should delay treatment but just to clarify a) if cause is treatable, eg h pylori, or b) could have other consequences that need monitoring (eg PA, coeliacs, crohn's - though suspect crohn's would already have been identified at this point)

if still not clear look at MMA/homocysteine - think MMA is probably cheaper and is going to be a better clarifier if folate is also low.

Potential referals to neuro or gastro specialist.

and with fbirder on trial of B12.

And there are probably a bucket full of other points that I just can't remember at the moment.

[Dewbuc in reply to Gambit62]

Thanks very much.

[Gambit62 Administrator in reply to Dewbuc]

and it would also be useful to give the patient some idea where they can go to find out about the condition and get support from others

- most are totally confused when they are told they are deficient - know I was ... but then my diagnosis also wasn't the result of presenting with symptoms - it was the result of ending up in hospital due to a fall that left me with an ankle that needed pinning.

Was in a teaching hospital and the consultant did ask his students about B12 deficiency but I certainly didn't learn anything useful from the conversation - think someone mentioned the possibility of osteo-arthritis ... and the consultant talked a lot about constipation ... just makes me laugh.

Been watching Quacks on the i-player over the last few days -think hat in some respects not much has moved on since the doctor who was handing out diagnoses and treatments like rubbing a baked potato over your lady bits as a way of treating cystitis

[Sleepybunny]

Hi,

"just phoned my niece only to discover her level was tested 10 days ago and is 90! She has been given low dose oral replacement! Her mother has been on B12 50 mcg daily for as long as she can remember!"

In flowchart from BSH Cobalamin and Folate Guidelines below, it is made clear that in UK anyone who is symptomatic for B12 deficiency (I assume dietary causes have been excluded) should have an IFA ( Intrinsic Factor Antibody) test and start initial B12 treatment whatever the serum B12 level.

stichtingb12tekort.nl/weten...

Lists Of B12 deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

In UK, only reason for giving low dose oral replacement (probably cyanocobalamin) B12 tablets that I am aware of is dietary deficiency.

You have mentioned 2 other relatives in other posts with either PA or symptoms of B12 deficiency besides the two above. I'm assuming niece and her mother are your blood relatives. Are all the GPs involved aware of the family history?

If there is an absorption problem in the family and there can be a family tendency to develop PA then low dose oral tablets are unlikely to be enough in my personal opinion. In UK, it's injections that are recommended as treatment for B12 absorption problems... see BNF/BSH Cobalamin Guidelines.

I left a response on your other thread where I queried whether oral tablets were licensed in UK as a treatment for PA or Non-dietary B12 deficiency and I wondered if Martyn Hooper of PAS would know.

PAS

pernicious-anaemia-society....

PAS tel no [phone]

I'd suggest that someone in the family considers joining PAS.

pernicious-anaemia-society....

PAS members can also access details of local PAS support groups. there are several in UK.

pernicious-anaemia-society....

Your post has touched a raw nerve because I worry about my own family. It has taken me almost 20 years to get B12 deficiency symptoms recognised.

Untreated or inadequately treated B12 deficiency could lead to further deterioration and possibly permanent neurological damage.

b12deficiency.info/b12-writ...

b12deficiency.info/b12-writ...

Perhaps it might be worth someone in family reading the B12 books I suggested on your other thread.

B12 books

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

Martyn Hooper is 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 book about B12 deficiency with lots of case studies.

[Ronsville2]

Isn't this part of the whole problem. the variances that exist.