Gastritis

[Doris11]

Hi all! Had my endoscopy last Friday.. my follow up (awaiting biopsies) I have mild erosive Gastritis which I understand can prevent B12 from absorbing? My Gastroenterologist says I haven’t got B12 deficiency ( before endoscopy) last test was 6 months ago! 226 ng/l (178ng/L - 2000ng/L (I did quote new NICE guidelines to him) he didn’t comment 🙈🙈🙈🙈. I have been SI once a month? But am still fatigued etc..

[Wheat]

hello Doris11, 226ng is quite low. I assume you have (unfortunately) a list of B12/PA symptoms. Why you have gastritis is important too.

Experts in B12 say 500 to 1000 is optimal, and under 500 the brain starts to shrink. Research lately, that 400 and below one is definitely in a deficiency state.

Besides symptoms are the key but gps etc, rarely seem to consider them or NICE guidelines. Or at least that has been my experience. I like your emojis!

With gastritis and malabsorption your B12 level has likely dropped even further.

As you are s.i. , even once a month now it will make levels of nhs serum B12 blood test seem falsely high. If you can, a private Active B12 blood test which gives actual used by body cellular level reading would be best, 70 is minimum reading. Plus folate and Vitamin D.

Have you had loading injections 1 eod for 2 weeks?

It is possible that 1 x month s.i. is not frequent enough. Depends on your symptoms, if for eg you are better after injection, then gradually feel worse until next one.

Oral would not work with gastritis malabsorption issues.

Best wishes. X

[Doris11 in reply to Wheat]

Thank you Wheat my active B12 was 49 after last test! Unfortunately over 7 months ago! Been on B12 complex for over a year when had tests so deffo not absorbing B12! No luck with Gp or gastroenterologist! It’s a battle 🙈 my folate at its lowest was about 3! I’m going to do a medichecks blood test soon 😬.

When I did my loading doses I felt amazing btw 🤩🤩

[Wheat in reply to Doris11]

Hello Doris11, defo. low b12 @ 49!

I expect you know the advice is too stop B complex at least three weeks before blood tests. In the case of malabsorption im not sure if it would help.

The benefit derived from loading doses seems to prove you need to increase your frequency of injections to actually heal.

Also, you can try changing gps at surgery. Make official complaint. Or treat yourself appropriately .

Best wishes, x

[Doris11 in reply to Wheat]

Thank you Wheat my Gp is generally helpful and tends to say I know my body! and a partner in the practise! When I asked about B12 injections she was very hesitant! It felt like she wasn’t confident in herself? Writing to haematology etc? I even showed her the new NICE March guidelines! When I spoke to the consultant Gastroenterologist he blatantly said I DONT have a deficiency! And wrote to my GP telling her not to prescribe B12 injections! Even the girl doing the endoscopy said I don’t! She said the deficiency range is 174 ng/L ! 🙈🙈🙈🙈🙈🙈🙈🙈🙈🙈🙈🙈🙈🙈 just before I got sedated I quoted the nice guidelines 🙈🙈😂 😴😴 I am going to make an appointment with my GP to discus this and maybe try fortnightly SI.

I need my thyroid bloods checked to as I think I may need to alter my dose. Many thanks 🙏 and sorry to go on 🤩

[Jo5454]

Sorry you’re having a rough time. When my b12 level was 226ng/l & the Drs wouldn’t believe symptoms were related to b12 defic I paid for an Active b12, which was bottom range at 27 so referred for a MMA test which was over 700 and should’ve been 0-190. Itbwas diagnosed as a functional deficiency, but wouldn’t have been considered a problem according to nhs range.

After being swopped to sublinguals and becoming very unwell again, b12 serum was 600 but I was experiencing all the old symptoms and more,so for me, the nhs ranges really mean very little!

So can understand that you can feel very unwell and really hopeyou soon get the answers and treatment you need….takecare.

[Doris11 in reply to Jo5454]

Thank you Jo5454 💕

[Cherylclaire Forum Support in reply to Jo5454]

Hi Jo, just to add this:

Although my B12 was at first 196 ng/L, my local "normal" range started at 197 ng/L - so very lucky. Injections started immediately. "Lucky we caught this so early !" my GP said.

I later got a functional B12 deficiency diagnosis later - as B12 injections were failing to stop my deterioration. My raised MMA was used to confirm GP's suspicion, and this was backed up by the testing lab.

This gave me two injections a week and, finally, gradual improvement. Despite this frequency, my raised MMA remained raised for three years. Never as high as your reading, fairly consistently 350-400, until the final (6th) test when it had finally dropped into range (200 nmol/L).

I now self inject, continuing the above frequency. My serum B12 will be over measurable amount (2,000 ng/L) and likely has been since 2016. Even my Oral Medicine consultant, initially very worried about this, has now spoken to colleagues about me which has altered his opinion: he now believes that I should not try to reduce my injections gradually, as my body needs this amount - and that tablets would not work for me at all !

Doris11 : If you have a GP who is willing to help, this can be far more useful than a GP believing they know all about B12 deficiency (symptoms, treatment etc). My GP was concerned about my health and wanted to find out why the usual B12 treatment frequency was not working for me. This eventually meant a lot of elimination - consultant appointments and tests - but I was grateful that conditions such as bowel cancer were ruled out early on, and that nothing else was ever found as a cause for any of the symptoms I had. Crucially, she was determined enough to request a B12 regime that had not been used before, and experienced enough to continue it when observing improvements. Regular monitoring included folate, ferritin, vitamin D, thyroid etc, but never, after diagnosis, B12 : "Pointless" she said.

Exactly.

[PlatypusProfit8077 in reply to Cherylclaire]

Your GP sounds like amazing!! I’m so glad you got the support and help that you needed !

[Cherylclaire Forum Support in reply to PlatypusProfit8077]

Yes, she really helped me find a way back.

[Doris11 in reply to Cherylclaire]

I will try ❤️