Hi everyone. After being diagnosed with gastritis (cause unknown) in December I took the advice of the gastroenterologist and started Omeprazole treatment. I’ve been having stomach issues for at least 7 years. After four months of treatment I was experiencing breakthrough symptoms so decided to taper myself off. I knew to expect rebound symptoms which is exactly what happened. I’ve now been off the medication for approximately a month and am having very bothersome symptoms. The symptom which is worrying me the most is an increase in tingling/burning/shooting pains in hands/feet and shins. My GP measured my B12 at 214 ng/L (145 - 910) when I was still on Omeprazole in March. I had an appointment last week at which I listed my symptoms and told her of my concerns regarding possible deficiency/gastritis etc. Long story short, the lab refused to test my B12. The GP referred me to Gastroenterology for possible MMA, Homocysteine and Gastrin tests (at my request) but I received a letter saying there are no grounds to see me. The GP was aware of latest NICE guidelines regarding B12 results. I’ve not taken any B12 supplements since stopping PPI as I really want to get a baseline reading. Sorry for rambling but my question is this - should I give in and supplement with B12? I’m just about to order an Active B12 test online but this is mainly to satisfy my own curiosity. I’m sure my GP will disregard the result if it’s low. Thank you for reading!
Rejected by NHS again: Hi everyone... - Pernicious Anaemi...
Rejected by NHS again
I wish doctors wouldn't hand out PPi's like they were sweeties. Just like anti depressents. IMO they cause more harm than good. I think functional medicine is the way to go - it looks at the root cause of illness rather than just the symptoms. A lot of gastritis caused by food allergies and this should be checked out first before giving patients PPIs.
It looks like the PPI's combined with your gastritis have given you B12D. I think you're right, your GP will dismiss your private B12 test and, judging from his reaction so far, you are on your own.
It looks like your oral B12 was helping as you have got worse since stopping them I think you should resume taking oral B12 and see if your symptoms go away.
Thanks for your reply. Totally agree. I believe my B12 was insufficient even before PPI treatment. I went gluten-free about 4 years ago and dairy free a couple of years ago. These measures helped with some of my gastro symptoms (and reduced thyroglobulin antibodies) but the gastritis continued and has progressed from mild to moderate with severe gastropathy.
pj16,
I think it best to cut to the chase here. I have had a brief look at your previous posts. Anyway, 7 years with gastro problems. A B12 at 214 ng/L (145 - 910) in March 2024 with symptoms of tingling/burning/shooting pains in hands/feet and shins.
There is really no point wasting £40.00 on a private blood test. It will just give you a figure at a particular time and date. Your GP will not take notice because Them be the Rules, I Tell Thee. If oral B12 works for you then recommence. Failing that it might be worth seeing a private GP for a first injection.
Pwb lwc
Thanks Narwhal10. A private first injection is definitely something I’d consider.
Hi pj16,
As much as we want GP’s on board. In England, today, junior doctors are going on their 11th strike. That is the state of the NHS.
You need treatment and any further delay getting the appropriate number or below range is just prolonging the agony and creates more stress for you.
😘
Much appreciated thank you 😊. More stress is the last thing we need!
I would push to get treated and not ignored by the NHS
Relevant blood tests .
A trial of b12 injections
G.ps need to listen and treat via guidelines or refer on.
Consider self injecting after first one done in a clinical setting.
Look at the NICE guidelines gps should to follow .
I agree don't wait until more ill.
Look at all of the links Sleepybunny posts
TC
Hi
The GP should be able to request an MMA test.
I recently had one done via GP request. The test has to be done at a hospital and be in the Lab within half hour of blood draw.
I have been trying to get the NHS to take ownership if you like of a possible B12 deficiency since last September. My GP at the time ignored the private Active B12 which was 28.6 borderline low and said they wouldn't do an MMA test. I did my own private MMA test which came back as high. I waited until Guidelines changed and also changed Dr Surgeries.
To cut story short, I saw a new GP regarding another issue with blood result and mentioned my previous private B12 and MMA results. I asked for an Active B12 test. As my total B12 is 422 he was a bit reluctant but did the form. It turned out the Active B12 was rejected but the MMA was done.
I did another Active B12 privately, that came back at 27 even lower than last time and my MMA result by NHS was above reference range. Been referred to Haematology as to way forward, awaiting response!!
If you are going to do a B12 test you will have to wait a while if you been on supplementation. I have no idea how long etc as my knowledge is very very limited.
I just wanted to mention really about the MMA.
Good luck.
Haematology isn’t the right people to see! You’re not anemic you’re not absorbing B12! My Gp wrote to them and I had a generic letter back saying they don’t deal with B12 deficiency. Hope this helps
Hi
This is not my post but in response to your kind reply. I know what you mean about Haematology. I had another blood query relating to nucleated red blood cells showing on a recent blood test which should be 0 but mine were raised. I took the opportunity to bring up the B12 issue with GP as I feel the NRB cell result is related to B12 deficiency. GP said he wanted to get advice from Haematology so I left it with him to see what they say. The query was only sent to Haematology Monday just gone so I don't expect a response just yet!!
Thank you for your reply.
Hi Dancer57 and thank you. The situation is crazy 😜. No consistency and the stress it causes definitely doesn’t help.
I know the whole thing drives me nuts. No one seems to know how to connect various problems and come up with an answer.
Fingers crossed everything gets sorted soon.
I forgot to add. I’ve had lots of tests which are at the ‘low’ or ‘upper’ end of the ranges which is very frustrating. I’ve also in the past though had raised nucleated red blood cells, low reticulocytes, Active B12 of 65. I’ve had both MMA and Homocysteine at upper end of ranges. The more thought I put into it the more I’m considering self injecting. I also have high in range MCH and low in range Haematocrit. I’m spurred on by everyone’s kind replies and encouragement so I might join my own dots!!!
My word how ridiculous!!!
What is the matter with the health service!!! How much more evidence do you have to produce to get a diagnosis??
Those new B12 guidelines mention about low B12 Active and total, testing MMA etc etc. You have had so many tests that appear to indicate further investigation is needed, I can't make it out. I also had a at the bottom of the range Haematocrit and recently low White Blood Cell Count and now Nucleated Red Blood Cells.
I have Hashimotos (Autoimmune)Thyroid Disease and my mum had Pernicous Anaemia. I tested positive for Autoantibodies to Parietal Cells but Negative for Intrinsic Factor last year.
My GP said re the NRB cell count, the rest of your bloods are ok!!
Say no more!
Have you thought of changing Doctor surgery? If I had all the results you had I don't think I would leave it at that. Although I know how frustrating and tiring it is to try and get help. It is a disgrace really. That is why I said in earlier post I want the NHS to take ownership of any health issue I have, that is what they are there for. I have paid out a considerable amount of money on private testing and private consultants in the last year because the NHS were no help unfortunately. Enough is enough!!!
It is up to you what you do of course, whatever you feel is best for you but its a pity you can't find a Dr that looks at the bigger picture, although I know from experience they are very hard to find.
I was Long Covid struck down 2020. And given anti-depressant and Lansoprazole, then took myself off both after research. Nuffield Iron Clinic in Cambridge might be useful for blood test clarification. They diagnosed PA and low thyroid. Which means NHS local had to co-operate. They now do my bloods annually so I can refer to them myself. I agree too about diet. Zoe Foundation great with help for that. Trusting your gut (literally) and finding what works for you paramount. Self injected B12 EOD, folate, all the Bs, Magnesium, Vits C and D + K, S Boulardii, liquid iron, CoQ12, NAC and mineral salts + one miserly NHS jab every 3 months seems to mostly work for me. And rest. We truly are what we eat. So well done on lactose and gluten avoidance. All the best for your journey.
Can I ask how lactose and gluten affect b12? Is it that milk acts as a barrier in the gut? What about gluten? Thanks.
Hello pj16, It is always disappointing to not get the support you need via your GP but like so many folk on this website you too will gain the confidence to bring about an improvement in your health.
The amount of knowledge and advice available here is astoundingly good and will help you plan for better health and improve how you feel and improve your symptoms. The one thing that I have learnt since being diagnosed with PA, in spite of my GP, is that everyone's improvement progresses at a different rate and so keep persevering and seek help here when you need to. Best wishes
yorkshiregirl14 thanks for that. I agree with everything you’ve said. It is thanks to this forum that I have gained the knowledge I have so far. With the great advice I’ve been given over about 6 years I’ve managed to get some symptoms under control. It’s hard to battle the system and I’m not very good at standing up for myself!
Gosh you sound like me 🙈 I was sure I had PA as I wasn’t absorbing B12 even after taking them over a year! My tests for serum B12 were 221ng/L I even quoted the new guidelines. Nope! Wouldn’t prescribe referred to gastrology and have reactive gastritis. No checks for PA! Even the gastrologist wrote to my Gp and said not to prescribe! No treatment offered for me? Thankfully! The NICE guide lines say you are more than likely deficient! I would try a decent B complex intake Inngennus and if you can afford it try and get an active B12 blood test and go into your Gp with information.
My B12 levels were 201 ng/l a few years ago and I went through the same issues. I decided to take oral supplements; initially I tried a daily Boots tablet of 40mcg and then a stronger 100mcg but neither appeared to work. When I switched to 1mg tablets, my levels raised quickly (in 6 months) to over 500 ng/l and my symptoms of balance and dizziness issues disappeared.
If you have PA, the tablets may not work. If the symptoms in your feet do not disappear, then going down the route of self injections that so many people use here might be your best bet.
Have you had an IFAB test? Buying a serum gastrin test might be worth doing. If you have high levels of serum gastrin, you might well have PA.
Thank you for replying. In December after seeing the images of my stomach and getting the gastritis diagnosis I had to suggest to the consultant that he could test for IFAB. He reluctantly did although the result was negative. This didn’t surprise me as I have hypogammaglobulinemia. Of course the consultant said ‘negative IFAB rules out autoimmune gastritis’. Do you mind if I ask where I could get serum Gastrin test since NHS/GP won’t do it?
The spire private bloods do the test:privatebloodtests.co.uk/pro....
The cheaper services like medichecks don't seem to do it but it might be worth ringing them.
Thank you 😊
Hi,
Should be lots of useful info in my detailed reply on this thread.
Help Needed! Have I got Pernicious Anaemia?
healthunlocked.com/pasoc/po...
Sorry for short reply...I have some problems typing at moment.
Hi Sleepybunny. Sorry to hear you’re having problems typing. Makes me appreciate your reply all the more. Thank you. 😊
Looks like you're working your way to your own inevitable conclusions here. It's one many of us have taken, which is to take control of our treatment rather than wait for the GP to do the right thing.If you can afford it, the Cambridge iron clinic sounds like a good plan. Someone also posted on here recently as having good results from a private clinic called CluB12.
A big turnaround for me, in addition to sorting my supplements was getting my gut health in good order. I followed the foundations of Zoe with lots of plants. I also cut out milk and keep wheat to a minimum. Additionally I have prebiotic of saurkraut and live yogurt and do intermittent fasting most days. For the first time in my 50+ years, since doing this, I have had very little gastro/reflux issues. It's no hardship, as my diet is delicious. Just good wholesome food.
Good luck with it all. 😊
Hi KBird01 and thanks for replying. I’ve watched quite a few Zoe YouTube videos and am trying my best with diet and lifestyle. I am 99% gluten free and I don’t have dairy. I try to operate on 16:8 fasting but usually manage 14:10. I don’t ever experience hunger which I think is due to slow transit. I definitely need to find pre/probiotic sources. I just wish I could figure out why I have gastritis! 😊
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