Writing to my doctor

[Alfabeta]

Hi All

Like many on here my B12d injections were halted because of the COVID 19 emergency which caused my surgery to close to most patients.

I’ve read the NICE advice to surgeries relating to b12 injections and it contains advice for non dietary and dietary b12 causes - I am a vegetarian hence they have assumed that my b12 has been caused because of dietary reasons and the advice states supplementation through tablets and the view that our liver will contain enough b12 to last for a year.

Since the cessation of my injections - my last injection was earlyFebruary - my parathesia has returned and got worse and I have developed IBS symptoms with severe bloating in my upper right abdomen along with occasional severe lower abdominal pain etc.

I’ve consulted my doctor about this and had blood tests for a range of things including my b12 level. The test was in the middle of June. My doctor has done 2 things.

1. My b12 was adjudged to be abnormal at 956 being above the upper level of 800 and, as a result, has advised me to cease all supplementation for three months including ceasing my daily multivitamin- following his advice my parathesia and IBS has worsened.

2. He also sent me for an endoscopy- which will be my 2nd in ten years for the same symptoms.

Both of these actions fit with NICE advice if my b12 deficiency is dietary but I have never had the causes of my deficiency assessed - it has been assumed that my diet has caused it.

Hence I am going to write to my doctor and would like some help - the help I am requesting is verifiable fact that I can present to my doctor.

1. It is my contention that being a vegetarian with just about enough b12 in my diet over 30 years that my doctors prescribing Omaprezole for acid reflux many times throughout these years has exacerbated/caused my b12 deficiency.

I wish to tell my doctor that which has been stated as fact on this site numerous times that acid reflux is as likely to be caused by low stomach acid as excess acid in which case issuing a ppi to a vegetarian with low stomach acid would constitute medical negligence..

My problem with this argument is that acid reflux caused by low stomach acid appears counter intuitive similar to saying that paracetamol causes headaches rather than alleviating them.

Can someone point me to commonly accepted medical mainstream sources which support this view.

2. If my last injection was early February and the only b12 that I have had since then has been:

a daily multivitamin containing the daily recommended b12 amount.

a 10 mg b12 supplement

a 50 mg b12 tablet twice daily issued by my surgery

Does the fact that my b12 score of 956 tested in mid June mean that I can absorb b12 from supplementation?

It seems reasonable on my doctor’s behalf to believe this to be the case.

3. The NICE advice for non-dietary b12 causes that b12 scores are largely meaningless because one cannot presuppose that the patient can absorb b12.

My surgery has assumed that, because I am a vegetarian that my b12 deficiency is dietary related. This seems a reasonable assumption but I think I should have been assessed as to whether there were non-dietary causes.

Referring back to 1 above, if my stomach acid is low, it would explain my IBS inasmuch as many of the foods I eat are listed as causing IBS symptoms - asparagus, broccoli, a wide range of fruits etc. - it would also mean that I would have reduced capacity to extract b12 from the dairy foods that I consume (although it would not stop the b12 in the tablets being absorbed).

I think that it is clear that I can absorb b12 (yes?) but what reliable tests can I have which show that I cannot absorb b12?

What mainstream medical advice can I quote that will tell my doctor that he should be treating the symptoms if there is no reliable test to prove that my body cannot process absorbed b12.

I have received advice on these issues before but not in a form that I can convince a sceptical doctor.

Thank you.

[Hidden]

Good morning Alfabeta.thats a very well written post and hopefully some of our more experienced members will give you the benefit of their knowledge.

Meantime I can tell you that I pretty much had the problem of a decent level in my blood serum but I persisted because of the awful symptoms I was having,I’m a meat eater by the way,I got some private bloods done via medichecks.

firstly I had my active b12 checked which gps don’t do on nhs they do serum blood checks,then I was advised by medichecks doc to get my MMA blood test which showed high antibodies so according to what I learned here this showed that I was functional b12 deficient meaning that although I had high blood serum levels it wasn’t getting into the cells where it was needed,it was just floating around the blood,confirmed by private endo also.

I then decided to have my Intrinsic Factor tested ,again privately by medichecks,this came back positive for pernicious anemia so I finally had a confirmed diagnosis which is now on my medical records.

I now self inject every other day , I got the initial loading doses from gp then a shot every three months which is no good to me it’s nowhere near enough to keep the symptoms away and because I have so many other nasty things going on I’m not up for any battles with this new gp ,I need him on side,so I just decided self injecting was the route to take.

Hope you’ve not nodded off by now lol good luck xx

[Hidden in reply to Hidden]

May I ask how much it cost private and do doctors accept their blood test results?

[Bonjourtristesse in reply to Hidden]

I used medichecks, think it was about £35. They weren’t low enough for doctor to consider problematic though as they were above the bottom end of the range.

[Hidden in reply to Hidden]

Good morning Teresa.I did my tests via medichecks and I usually timed it nicely for when they had a discount on them,biggest problem was waiting until I could access a nurse to draw the blood for the tests.youll see all their tests and costs if you look online and you can book a nurse via them to draw blood that’s usually around £30.

My gp and private consultant were happy to accept the results and most private endos will tell you to use medichecks anyway.x

[Bonjourtristesse in reply to Hidden]

I can’t believe you have to pay for your own tests. When I looked the intrinsic factor one is about £300 so I haven’t bothered with that.

[Hidden in reply to Bonjourtristesse]

I can't afford £300... do you stop B12 injections prior to active B12 test or make?

[Hidden in reply to Bonjourtristesse]

Intrinsic factor test is £100 on medichecks plus I had a discount so I think I got it around 80.memoryhasnt kicked in yet lol,and yes you’d need to stop all supplementation before you have any of the tests done ,opinions vary on length of time , that was what I found the hardest part but I needed to know for sure because of other health stuff going on.adrenals etc.Take care x

[Nackapan]

All I can add to your clear reasons to put on a letter.is:

Depending on your age it is a known fact as we age we can absorb less of out nutrients to from food.

The menopause is a known risk factor for tjus ans I imagine d the hormonal drop with men is too.

My sister is a vegetarian ans like tiu was fine for 30+ years. With the fright of seeing me I'll and some symptoms she hot tested. To cut along story short she needs alot of oral supplements and lemon ect for her stomach. She had never had anti acids or b12 I jections but it was age that changed things. Her b12 went from 118 to 556.

With you as yiuve had injections it's been said on many occasions on here that tour body then needs higher levels of b12 in the blood . The neurologist said this to me also as said to keep my levels up.

I've also been told by my Go its dietary.

I'm not a vegetarian but was eating a little less red meat and watching my fats as cholesterol high.

I've like tou tried oral forms given by Gp. 50mcg 3× a day. She wanted to reduce my injections as levels over 1500

At the start afteroading doses and aupposidky waiting for 4 months. I took almost every form available apart from patches.

Even if you can absorb some? It is clearly not enough.

I've put it to my doctor.

Trial of tablets over.

Need for b12 levels high now.

In your cases ppi reduced b12

? With you age

Main point r with Gps is touve followed their I instructions and it has not worked

Your symptoms are the things to list

That clearly worries them

Choose the worst 5

Especially neurological ones

Obviously the blood test not needed and means nothing

Rather than going in guns blazing which often seems to make them close ranks I would start with that letter . Then back up with e evidence if research papers

Or/ and get a consultant neurologist orwhoever youve seen on board. I got the neurologist to write basic saying I needed 2 weekly injections . He dudnt mention diet .

The surgery took tunbridge at this and initially closed thanks on the Si sc he suggested.

This changed.

Yes you can say I need my symptoms treated. They had been treating g tou with some success so why withdraw it??

My reply is muddled.

Your post is articulate.

Just list your points

Keep it simple they dont read it properly otherwise.

I hope its recieved by the eight doctor on the right day!!

Should not be like this.

Please get your b12. Youve 'cooperated ' with them but must now treat tour symptoms.

Like you say with no definitive tests its clinical judgement

It may still say dietary on my notes but I'm prescribed 2 weekly b12 I je tio s at present. It's not been easy 2 gps in the

Practice opposing all the way. I've had them refused 3 times and stopped once.

Hope you get listened to.

T c

[fbirder]

Your problem boils down to - How can I persuade my doctor that my deficiency in not dietary. Unfortunately, I cannot think of an immediate way to do this.

You could ask for an Intrinsic Factor antibody test. If that's positive then you have PA, almost certainly. However, if it's negative your doc may well decide it backs up their opinion that it is dietary.

You could try just tablets and wait until your condition degrades so much that even the doc might be persuaded. But that's no good for you.

If your gastroscopy is soon then that might supply the answer. It will pick up any atrophy of the stomach lining. If that is restricted to the corpus and fundus then it is almost certainly autoimmune. Histology might show signs of metaplasia. And Autoimmune Metaplastic Gastric Atrophy is the underlying condition that causes PA. As for a gastrin test. If that is high then you have AMGA.

[fbirder in reply to fbirder]

Just came back from walking the hounds. It occurred to me that you could ask for a gastrin blood test now.

If your gastrin levels are very high it means one of these two things -

Your gastric parietal cells are being attacked, causing low stomach acid, and high gastrin.

You have a gastrinoma, a type of Neuroendocrine cancer caused by a fault in the MEN1 gene.

onlinelibrary.wiley.com/doi...

[Sleepybunny]

Hi,

"Since the cessation of my injections"

Are you keeping a symptoms diary that tracks changes in symptoms and if and when treatment received.?

Could be useful evidence of deterioration or improvement in symptoms to show GP.

Have you considered writing to your GP?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

"What mainstream medical advice can I quote that will tell my doctor that he should be treating the symptoms if there is no reliable test to prove that my body cannot process absorbed b12."

Might be something useful in these...

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

BNF

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

NICE CKS

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

B12 article from Mayo Clinic (US)

ncbi.nlm.nih.gov/pmc/articl...

"You mention paraesthesias which are usually considered to be neuro symptoms."

Perhaps you could persuade GP to refer you to

1) a neurologist

2) a haematologist

If GP refuses referral, perhaps they would be willing to write to neuro/haemo for treatment advice?

Although I'd add that sadly many specialists I saw seemed to have limited understanding of B12 deficiency.

"I’ve read the NICE advice to surgeries relating to b12 injections"

Did you mean the guidance issued by BSH (British Society of Haematology)?

See PAS news item on updated BSH guidance below.

pernicious-anaemia-society....

I wrote very detailed replies on another forum thread with links to B12 deficiency symptoms lists, B12 books, B12 websites, UK B12 documents and other B12 info including some hints on dealing with unhelpful GPs which might have something useful.

healthunlocked.com/pasoc/po...

As you have sadly found out the pandemic is impacting patients' B12 treatment.

Many UK forum members have reported injections being stopped/delayed

/frequency reduced or swapped for oral tablets.

I left a detailed reply about impact of pandemic on B12 treatment in UK in next link.

healthunlocked.com/pasoc/po.....

Some forum members feel their only option is to self treat. My personal opinion is that this is a last resort but I was driven to it when unable to get any B12 treatment several years ago.

I am not medically trained.

[Alfabeta]

Thank you

[Sleepybunny]

My understanding of BSH Cobalamin and Folate Guidelines is that if you have neuro symptoms whether caused by dietary B12 deficiency or other cause of B12 deficiency then you should be on injections.

You mention paraesthesia, do you have other neuro symptoms?

I suggest reading BSH Cobalamin and Folate Guidelines to see if you can find a useful quote or two.

[Alfabeta in reply to Sleepybunny]

Thank you, I know this and my letter is designed to address this issue with my surgery. The trouble has been that they have always refused to accept that my neuro symptoms are b12 related! I told my doctor recently that I had parathesia returning and he just ignored it - he also ignored my IBS symptoms saying that IBS starts in the 20/30s not at 71 years of age and referred me for yet another endoscopy - my fourth in 20 years and the second he has sent me for!

Thank you for responding.