I've been having some concerning symptoms for about 3 months.
It all started with random abdominal pains and low back pain.
It is now radiating down my groin and into the backs and sides of the thighs.
I saw my GP last month as the stomach pains are now very bad, horrible burning pain, reflux, stabbing pain in the stomach and all over abdomen. She suggested "mild gastritis" and gave me omeprazole which I have stopped taking after a week as it was doing nothing.
For the last month, since saw the GP, I have had the following symptoms:
1. several mouth/palate ulcers
2. stabbing leg and arm pain, shooting type pains in arms and legs particularly behind knees and inner crooks of elbows
3. constant pins and needles in my hands and feet combined with "dead arm" feeling
4. muscle twitches in my biceps, triceps and thigh muscles (exactly like the kind of eyelid twitch you get when you are tired, but in the arm and leg muscles). I've also had a few twitches in the abdominal muscles and neck muscles. They are gone too fast to film them on my phone though I have tried! Muscle twitches about 10 times then eases off. Quite frightening. Happens several times a day in various limbs.
5. a small patch of hair loss on my front hairline
6. zinging electrical stab of pain in my ear and across cheek. This has happened maybe 10 times in the last month.
7. anxiety
8. very tired
9. very low back pain combined with "stabs" of pain in the kidney areas.
I had a CT scan of the kidneys a few months ago and kidney stones were ruled out. They apparently did a CBC which was "fine".
So - I am thinking perhaps the "mild gastritis" I have is actually atrophic gastritis (I have had heartburn for years) and that I am now showing signs of B12 deficiency.
My GP has been so unhelpful, they never get back to you with test results etc and I am loathe to keep visiting them as you a)struggle to get any kind of appointment and b)never see the same GP twice and so have to explain the whole story again by which time your allotted 10 minutes is up.
I have ordered a B12 test online (from Superdrug!!) which tests active B12, Intrinsic factor antibodies and Folate levels. The blood is collected at home and sent to an outside lab. Do you think this is a good start? If the results come back normal can I eliminate B12 deficiency from my potential diagnosis? If it is positive for Intrinsic factor or low B12 is this enough ammo with which to confront my GP that I need more investigations (ie gastroscopy etc)?
Finally, do you think my symptoms could be indicative of low B12 even though my CBC taken in hospital was apparently "normal"?
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vetnurse76
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Following along to hear the responses regarding b12.
As for gastritis, zinc carnosine, dgl( may increase blood pressure) vit d3 and fish oil, l glutamine help with the lining of the stomach.
I didnt like the side effects of a ppi and took an h2 blocker (pepcid ac at 30mg). It reduces acid production but not as bad a ppi. I dont like to be on it more than 3 weeks. After getting off it I would do the above supplements and slippery elm gruel.
You should get tested for h plyori if you havent already since its linked to gastritis.
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment.
I urge UK forum members to find out what's in the local B12 deficiency guidelines for their ICB (Integrated Care Board) or Health Board. If you can't find them online or by searching forum posts here, best bet is to submit a FOI (Freedom of Information) request to ICB or Health Board asking what B12 deficiency guidelines are used locally and for a link to or copy of them.
CCGs ( Clinical Commissioning groups) were replaced by ICBs in England in 2022.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Yes I'm in the UK (scotland). Forgot to say, I had a stool sample checked for H.Pylori and it was negative. Bloods for celiac disease were also negative, as was a fecal calprotectin (they said it was "normal"), but there is most definitely something going on in my digestive tract as seen by the pain, burning, and utterly ridiculous loud gurgling noises that are constant.
There used to be a support group for thyroid issues in Kilmarnock that welcomed people with B12 deficiency. If interested, search or post on Thyroid UK forum.
NHS Scotland link about B12 deficiency and Folate deficiency
I am in Scotland and have had very good treatment. Nothing like the poor treatment that is often posted here. Please ask for a copy of your blood results and post them here. They must give them to you. Post them here without identifying the name of the GP or the surgery. It’s impossible to say if you are B12 deficient based on your symptoms alone; they could be as the result of many things. Your B12 and folate results will be a good starting point. You should also ask for a fecal elastase test with your symptoms which tests pancreatic enzyme function. This is under tested-I had to push for it twice as my stomach symptoms were not going and people in here said take more B12 which did nothing so I suspected something else was going on. It is a simple and accurate test. If it is negative and if your B12?and folate is in range and your IFAB is negative then your next course of action is to be referred to a gastroenterologist. Insist on it as it is your right. Good luck and let us know how you get on.
I had those tests too however they aren’t the same as an elastase test. Elastase is produced by the pancreas as part of the digestion process and is determinative of pancreatic function in a way that blood tests aren’t. It appears in the stool in the colon. It is not degraded by medicines or supplements and so it’s measurement is very reliable. My first level was 330 and anything from 200 to 1000 is normal. I had very similar digestion symptoms to yours . They didn’t improve and I insisted on having a test 4 months later when it had ranked to 170 which is classed as mild exocrine pancreatic insufficiency. A year later it was down to 74 which is classed as severe deficiency. So keep asking to get this tested. If you think B12 deficiency isn’t well understood then hang in to your hat!! Also my B12 PA did appear quickly and randomly like yours so it very much can happen like that. Mine Ali started with gut issues and my calprotectin was 432 but no IBD. Trust your instincts.
sudden onset not really consistent with PA - symptoms of PA usually come on slowly - more likely that the gastritis is affecting folate absorption and you are folate deficient - but the B12 test will include folate anyway.
I am not saying it is impossible - just that it is more likely there is something else going on.
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