B12 and omeprazole: Hi, I need advice... - Pernicious Anaemi...

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B12 and omeprazole

sunshineday profile image
26 Replies

Hi, I need advice re B12 and omeprazole. My hubby has bronchiectasis, rheumatoid arthritis, hypothyroidism and severe peripheral neuropathy but not pernicious anaemia. However this site seems the most informative about B12. My hubby saw a neurologist a few days ago and he is writing to GP to say hubby needs B12 injections to help neuropathy, we have been taking sublingual B 12 as GP didn't think injections necessary, hopefully our consultant will win the day. However as hubby also has Barrett's Oesophagus he has been taking omeprazole on and off for 18 months. The consultant says stop these as they reduce b12 absorption. I am hoping you will be able to suggest something in place of omeprazole to stop the acid etc which won't compete for the B12. Sorry it's long winded but thought it best to give some background. Thanks for any help.

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sunshineday
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Foggyme profile image
FoggymeAdministrator

Hi Sunshineday

I have two autoimmune conditions (lupus and psoriatic arthritis), B12 deficiency, small fibre neuropathy, autonomic dysregulation… and Barrett’s Oesophagus…plus some other twiddly bits 🤷‍♀️.

It’s really important that your husband doesn’t stop taking PPI's (omperazole, lansoprazole etc.) - these are essential to stop the Barrett’s progressing - PPI's are the 'gold standard' treatment for Barrett’s - other forms of acid suppressants or antacids don’t do the job (i.e. H2 antagonists - another acid suppressant - are only 30% effective for Barrett’s and therefore not a suitable replacement for PPI's - and they still impact on B12 absorption). But this is a moot point because…

Whilst PPI's do impede the absorption of vitamin B12, once on B12 injections this doesn’t matter because the B12 is absorbed from your blood rather than via the gastric route - so impeded absorption of B12 via the gastric route is no longer an issue.

I can’t stress enough how important it is to carry on with the PPI so that the Barrett’s doesn’t progress to something more sinister (but don’t worry, PPI's are extremely effective for Barrett’s).

I know this because I had to do a lot of research when one of my 'ologists' told me to stop PPI's and take an H2 antagonist instead (famatodine). My GI symptoms worsened significantly, I'm now on double doses of PPI's, still symptomatic, and awaiting an endoscopy to assess the current status of the Barrett’s. So 😬.

If your husband is concerned, he can/should discuss this with his gastroenterologist.

Also - as your husband has neurological symptoms he should be on the intensive regime of B12 injections - that’s is, every other day injections until no further improvement (sometimes for many months, or longer - repair of the nerves can take a long time - and neurological symptoms are often the last ones to abate).

So you are aware - many GP's are not aware of this intensive regime of B12 treatment. They can find reference to it in something called the British National Formulary (BNF) - they will have a copy on their desk. If they are reluctant to treat with the intensive regime - ask them to check the BNF (you may have to insist). The reference to intensive B12 treatment is about the third or fourth paragraph down so they may have to read further than they usually do. Also be aware - the intensive treatment regime for neurological symptoms should be given - even in the absence of macrocytic anaemia (not everyone with neurological symptoms due to B12 deficiency gets macrocytic anaemia and again, not many GP's know this.

Sorry, I can’t post links right now (IT gremlins) but if you look up BNF online and search for 'hydroxocobalamin' in the BNF, you'll be able to see details of the intensive treatment regime - and tell your GP you've read them if they are reluctant to treat your husband with the intensive regime (its very important to get this treatment because neurological symptoms need high frequent doses (every other day) of B12 in order for healing to take place - that’s why the BNF advises this treatment.

I'm sorry that your GP didn’t think that B12 injections were necessary - all the guidelines (BSH, NICE etc.) state that these are essential to prevent neurological damage when neurological symptoms are present. (Again, sorry, can’t post links to guidelines - you can find them by searching on the internet - or perhaps one of our lovely members may be able to post the links for you.

Very best of luck with his GP - let us know how you get on. And if your husband can’t get the right B12 regime, please come back for more advice.

sunshineday profile image
sunshineday in reply toFoggyme

Thank you so much Foggyme, your answer is so helpful. We only saw the consultant last Thursday and our GP is on leave until a week Tuesday so will discuss with him on his return. Will definitely stay on Omeprazole because they certainly help. Hubby had a gastroscopy last week so hoping all ok. Will update you when we know and thanks for all the info about B12, I knew this was the right place for guidance.

Foggyme profile image
FoggymeAdministrator in reply tosunshineday

Hope all goes well sunshinelady.

It’s important to start the B12 injections ASAP to prevent potentially irreversible neurological damage, so I hope you manage to get a very quick appointment.

Just wondering… is there another GP you can see to get treatment started?

Will watch out for your update x

sunshineday profile image
sunshineday in reply toFoggyme

We saw a private neurologist as earliest appt on NHS not until next April, he will write to us and the GP about our appt and the B12. When GP on leave other GPs usually follow up correspondence and results etc. I have booked a f2f with GP on day he returns and will go fully loaded with BNF guidance. Thanks again

Foggyme profile image
FoggymeAdministrator in reply tosunshineday

Excellent. Good luck to you both x

sunshineday profile image
sunshineday in reply toFoggyme

Meant to say Foggyme, hope all goes well with your endoscopy, hubby's was due June but covid pushed all appts back. Best wishes

Foggyme profile image
FoggymeAdministrator in reply tosunshineday

Thanks sunshineday. Hope your husband gets his soon - so many things to look forward to 🤣

Michael-MGP profile image
Michael-MGP in reply toFoggyme

Great explanation - I don’t know much about Barrett’s!However, I had undetected B12-D for more than 18 months.

6 months of this: my cognitive function was completely shot. I lost 6 months of my life!

My useless GP then tested me for Pernicious Anaemia - I had B12-D due to PA.

I was 61 at the time.

I have had the following confirmed by a GI expert:

- 20% of people older than 60 develop B12-D.

- Almost 100% of these people have B12-D due to PA. It’s not the usual 80/20 rule - it is almost 100%.

My GP thought I had the onset of Alzheimer’s!!! Useless!

As soon as I got the loading (every 2-days for 5 sessions), I started recovery.

B12-D has left me with Neuropathy.

The NHS are now ducking and diving responsibility - they know why it happened and they give me BS. I have never met a bunch of liars like them.

Get your Hubby loaded ASAP.

Don’t take any BS from you GP. Take a copy of the Patient Charter with you and highlight the sections that are specific to the NHS support you are entitled to.

I have improved very slightly, but I know that my health condition is a result of the incompetence of these GP’s.

B12-D is devastating. You need to act quickly.

Good luck….

waveylines profile image
waveylines in reply toMichael-MGP

Are you on apternate day injections because you sohuld be. Loading two weeks is not enough. Ive been doing daily then twice dsily for three years jow -have improved massively over time but cant reduce or slip back. So pelase dont oet them under treat you as well!

sunshineday profile image
sunshineday in reply towaveylines

Thanks waveylines for info, we are keeping everything crossed that things will go smoothly and we soon have the consultant's report. Hopefully then it will be onward and upward 🤞

Foggyme profile image
FoggymeAdministrator in reply toMichael-MGP

Michael-MGP. That’s dreadful. I'm so sorry. Unfortunately we hear of that quite regularly here.

Just a thought - you had loading doses BUT did your GP continue with the every other day injections (the intensive regime I spoke to sunshineday about)?

If you still have neurological symptoms you should be on this regime - your neurological symptoms will have NO chance of improvement if you are only getting B12 injections every 8 - 10 weeks. If this is the case, your GP is exposing you to potentially irreversible neurological damage.

If you are not having every other day B12 injections, please look at the BNF (details I left for sunshineday) and go and insist that your GP treats you according to the treatment guidelines for those with neurological involvement due to B12 deficiency. Also - look up the 'BCSH (now the BSH) guidelines for the treatment of cobalamin and folate deficiencies' - clearly stated in there about every other day injections until no further improvement for those with neurological involvement. Also stated in NICE guidelines and on NHS website (in case your GP is difficult and requires 'evidence').

Some of your neurological symptoms may improve - unfortunately some may be permanent due to long standing untreated deficiency. The thing is though, you need the intensive B12 treatment regime - possible for many months / years. Some say that neurological repair is not possible after six months BUT we do have people here who report continued improvements even after two years of intensive treatment. I'm saying this just in case your GP says it’s too late. The bottom line is that unless you increase the frequency of injections to every other day and continue with that, you'll never know. And this is too important to NOT get that treatment. (As waveylines , improvements can and do happen).

Very best of luck and I'm so sorry that this has happened to you. Please let us know how you get on and put up a post if your GP refuses the injections and you need more advice on how to proceed.

Sleepybunny profile image
Sleepybunny in reply toMichael-MGP

Hi Michael - MGP

Apologies for a short reply but thought you might find these links to threads where I left detailed replies useful. I'm in UK so some info will be specific to UK.

The threads have info about causes and symptoms of B12 deficiency, B12 books, B12 websites, B12 articles, UK B12 documents, B12 websites and a few hints on dealing with unhelpful GPs.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained.

sunshineday there may be some info in the threads that you find useful.

sunshineday profile image
sunshineday in reply toSleepybunny

Thanks sleepy bunny

Sleepybunny profile image
Sleepybunny in reply toMichael-MGP

Hi,

Might be worth you starting your own thread on the forum...you'll get more responses that way. Click on blue pencil icon at top right of screen.

Curlygal profile image
Curlygal in reply toFoggyme

Hi Foggyme , I hope you don't mind me asking, but how did you come to be diagnosed with Barrett's?

Foggyme profile image
FoggymeAdministrator in reply toCurlygal

Of course I don’t mind you asking Curlygal and I'm so sorry I haven’t been able to reply before now.

The Barrett’s was diagnosed via biopsies that were taken during an endoscopy. As far as I know, that’s the only way to have Barrett’s diagnosed.

Again, apologies for being such a slow coach… x

wedgewood profile image
wedgewood

If your husband can get B12 injections instead of tablets , he can continue taking Omeprazole , as his stomach will be by-passed by injections , so the absorption of B12 will not be affected .It would be good for him to take a multi-vitamin and mineral tablet , as absorption of those nutrients will be compromised by the low /no acidity in his stomach due to the Omeprazole . A probiotic is always a good supplement for a low acid stomach . Personally i now take some kefir daily , which i find really great . But natural yoghurt , sauerkraut and kimchi are also good natural probiotics .

sunshineday profile image
sunshineday in reply towedgewood

Thank you Wedgewood, it's so helpful to get information and advice from people who are struggling with the similar problems. We usually have Actimel drink each day so hope these are ok as a probiotic. Really appreciate your reply

MattyLee profile image
MattyLee

Wow! I also have a B12 deficiency for which I take a daily supplement. I started Omeprazole about 6 months ago. I hope this will not cause problems with the B12 absorption. I've also had D3 and iron deficiencies which are addressed with daily high dosage supplements.

sunshineday profile image
sunshineday in reply toMattyLee

Thanks MattyLee, reading the replies on here it's really important to continue with Omeprazole, especially if having Barrett's Oesophagus so hubby will be continuing with these. He also takes D3 and ferrous sulphate which neurologist said needs to change to ferrous fumarate. It gets complicated when more than one illness and numerous medications involved!

Gillsie54 profile image
Gillsie54

HiI have had long periods on omeprazole for reflux and GI problems and stomach pain. This was before a positive diagnosis of pernicious anaemia.

I now gaviscon to help stop reflux but don’t know if I should take omeprazole especially as in the last 10 years I have not had any further endoscopy check!

However with long term PA I know that my stomach may not be acid due to loss of parietal cells and the ability to make hydrochloric acid. I have pondered this problem and in my research came across a paper linked to Barrats oesophagus and PA.

A case of Barrett’s oesophagus in pernicious anaemia: acid is not the only culprit!

Marilia Carabotti, Edith Lahner, Carola Severi and Bruno Annibale

People with PA are just not checked often enough.

I hope you get the injections and I hope the GI problems resolve.

coat2003 profile image
coat2003 in reply toGillsie54

hi there.q. what substitute for any prazoles do you suggest.My late husband passed on from a lymphatic Hodgkin syndrome and p#a nemia had sthg to do with his absorption of any vit bs.he must have been born with hiatus...whatever it is called run in his family, he was a long life acid reflux sufferer, he tried over the counter in his 60s went on Lansoprazole.kin no way i am saying he passed on from anemia, but a significantly important in getting any blood disorder.... and he took it 365 x 20 years...

sunshineday profile image
sunshineday in reply toGillsie54

Thanks Gillsie54. My hubby doesn't have PA but lots of other problems including Barrett's oesophagus. Just hoping the B12 injections work for his peripheral neuropathy. Back on omeprazole now and acid much calmer

Sleepybunny profile image
Sleepybunny in reply toGillsie54

Here's a link to the article Gillsie54 mentioned

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

sunshineday profile image
sunshineday in reply toSleepybunny

Thanks sleepybunny

coat2003 profile image
coat2003

i didn't succeed, doesn't mean to say you won't.My late husband severe acid reflux, one tblt a day ok. wean him off hard, try though...I tried aloe vera drink...he tried a mix honey,apple vinegar. Unless a recent issue I am NOT BEING NEGATIVE, JUST REALISTIC...Try to avoid anemia of any sort.b any absorption blocked with antaacide Lansoprazole. He didn't last more than a day without a tablet, got just severe reflux I gave up, seeing himin agony...and once acid reflux the same symptoms as a heart attack.that was the worst...did all the tests in hospital and found his acid reflux at work, they ALWAYS run tests in hospital, just to eliminate heart. but scarred STIFF.anything to do with oesophagus not ok. is serious enough, his sister goes oncein 2 years to investigate it...

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