I have just returned from a GP appointment to discuss my B12 deficiency and acute gastritis. I waited 7 weeks for this appointment but it’s been of absolutely no help and I feel so crushed. I have Hashimotos, vitiligo and lichen planus and 3 years ago I had major bowel surgery resulting in the removal of my ileum and a large part of my colon.
I have dreadful gastritis for the first time, painful burning, constant nausea and I feel so full all the time that I can only eat tiny amounts and I’m rapidly losing weight. I am extremely fatigued, dizzy and feel very unwell. Medichecks blood tests show active B12 of 37.5 (range 37.5 -150) and positive parietal cell antibodies. Vitamin D is very low. I’m waiting for Medichecks pernicious anaemia tests to come back. I recently had a CT scan as part of my surgery follow up and it showed nothing untoward.
The GP refused to comment on the gastritis and said that B12 is not deficient. He proposes to check my haemoglobin and recheck B12. I’m taking high strength supplements of Vit B complex and Vit D to no avail. I simply don’t know where to go from here. Is the NHS now unfit for purpose? Does anyone have any advice for me?
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Kizzygirl
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I'm not medically trained but I do know that B12 is absorbed in a part of the ileum called the terminal ileum. I might be missing something here but if you dont have that part of the ileum in your body anymore, a B12 deficiency seems more or less inevitable without regular B12 injections. 3 years is about the right timeline for stores to have run low enough to cause problems.
What I'm a bit confused about is why your doctors seem to have expected B12 absorption to be completely unaffected by the removal of the site where it is absorbed. ???
My expectation would be that anyone who has their ileum removed would be immediately put on regular B12 injections to avoid deficiency.
This doesn't seem like rocket science so I'm wondering what part of the story your doctors are seeing that I am not. I don't see any obvious way that you would have been able to absorb B12 after removal of the ileum so I'm puzzled why this wasn't discussed right after your surgery. Its not like this would be unexpected. 🤔
It had never been mentioned to me, only after researching my symptoms did I discover this would be an issue. I tried to explain all of this to the GP but he was completely uninterested (and I strongly suspect, very poorly informed). I probably won’t go back, there seems little point.
you need to put all this in a letter of complaint to your GP Practise Manager and tell them that unless they start prescribing/ providing you with B12 injections then you will hold the practice and the GPS in particular personally responsible for the deterioration of your health!
It’s absolutely deplorable that you have been treated as you have. If you don’t get a satisfactory response, send an email to the Consultants secretary who did your surgery and ask for an immediate appointment due to your failing health.
My question for them would be simple : if the ileum is not present, how is B12 meant to be absorbed? Magic?
If they say "passive absorption", this is only for high dose B12 supplements (not food) and doesnt work for everyone.
Even if they had decided to try the passive absorption route this should have been a discussion and agreement to take high dose B12, made 3 years ago in order to avoid the inevitable. Its really quite baffling.
" In addition to the IF-mediated absorption of ingested Cbl, there is a nonspecific absorption of free or crystalline Cbl that occurs by passive diffusion at all mucosal sites. "
from a neurology textbook (Neeraj Kumar, Handbook of Clinical Neurology, 2014)
Can't say I'm surprised by your GP's reaction. The average GP is a jack of all trades and relies heavily on blood tests. They don't seem to be able to think 'outside the box'. As most of us have found out if your B12 level is just 1 point above the cutoff limit the GP refuses to accept you could be B12D. They are given hardly any training on nutrition and how important essential vitamins are. They haven't a clue what the symptoms of B12D are.
Don't get despondent. We are so lucky to have the 'net and online forums. They will help you decide what you need to do to help yourself.
Get back to tge specialist team .I'm trying to persuade my friend to get her son treated with b12 as 2 years after bowel surgery from Crohnes diseases. As b12 serum levels okay it's on deaf ears .
His symptoms are severe and so typical. 😢 of a deficiency.
You are informed .
That blood test result should confirm you need b12 injections .
Are you seeing a gastroenterologist? If you've had bowel surgery, have they considered that you might have bile acid malabsorption (BAM) which leads to low levels of B12.What symptoms in the gut are you experiencing? If it's urgent diarrhea then that's a sign of BAM.
There's a definitive test for BAM called the SehCAT test which a gastroenterologist can do.
No, I’ve never seen a gastroenterologist. I do experience diarrhoea and have to take a lot of Imodium to control it. It was explained to me that the loss of the ileocaecal valve makes diarrhoea inevitable but nothing was ever mentioned about ongoing problems. As usual we have to do our own research and try to sort things out with no help from the medical profession!
Request a gastroenterologist for a SehCAT test; it's an accurate test. BAM also leads to low levels of B12. Surgery to the Ileum or removal of the gallbladder are often associated with BAM.
The terminal ileum is where cobalamin is actually absorbed from food after being processed further up. So no ileum means no absorption. Any good doctor should know this. So where are these good doctors?
Quote....
The ileum opens into the large intestine controlled by the Ileocecal valve.
The ileum is responsible for the digestion and absorption of nutrients like vitamin B12, fats, bile, and everything else not digested in the rest of the intestine.
It seems logical to me that the surgeons responsible for the operation would pass on information to the GP about necessary ongoing medication due to removal of body parts that provide vital functions !
Yes, the ileum is important. A few sentences from a case study in Martyn Hooper's book*:
" ...Next I went to see a haematologist and she confirmed that due to my ileal surgery I should have been having B12 injections since 1990 and that my symptoms were those of B12 deficiency. "
This person relates that IFab test proved negative and MMA test was returned "normal". She later had problems with the GP stopping her injections because the auditors had questioned it (!!!)
Martyn Hooper's comments on this case include the following:
"....If you know of somebody who has undergone an ileostomy, it might be worth checking that he/she is receiving regular replacement B12 injections; these should be given for life and regardless of any serum B12 test."
Be aware that the IFab test will even give negative results around 50% of the time for those with PA, so cannot be seen as a definitive "pernicious anaemia test" . It can only tell whether you have intrinsic factor antibodies active in the stomach at the time of the test.
You do not require any test, as far as I can see. An ileostomy would automatically mean that you subsequently have a lifelong need for B12.
clivealive - perhaps you can help here ? Am I right in thinking this was similar to your experience ?
* Martyn Hooper: What You Need To know About Pernicious Anaemia & Vitamin B12 Deficiency.
Thank you, that’s helpful. I don’t have a stoma but a long section of my small intestine, the ileum, was removed a well as half of my large intestine. I’ve never received any advice for ongoing issues that might result!
I may try to get my surgeon to write to my GP as I am not going to get anywhere with him.
I had a partial gastrectomy after a perforated peptic ulcer at the age of 17 so I was far to young to understand and all my surgeon told me was that I had to give up my electrical apprenticeship and "get a sedentary job".
Nobody told me this as Google didn't exist sixty plus years ago.
"Therefore, people who have had a partial or complete gastrectomy need to supplement their diet with oral vitamin B12 or intramuscular or subcutaneous injections of vitamin B12.
It was 13 years later in 1972, by which time I was a walking "Zombie" ,before my GP "discovered" what was wrong with me after two Schilling tests - the first in 1968.
There is "life after P.A" as I'm still "clivealive" aged 82
KIzzygirl: Think of it this way: ONLY B12 BOUND to Intrinsic Factor (is a protein) will be absorbed by "ILEUM" and eventually released into our cells in a manner our bodies can use. Any defect in the b12 process, as it is an exact complicated process, will affect absorption, hence the need for injections . The absent of your ileum creates a defect in the B12 absorption process. Can you go back to the doctor who performed the surgery and have him order injections?
I think I might try to track him down. I had emergency surgery for a rare malignant tumour in the ileum. Misdiagnosed by GP for 2 years until eventually I had a total bowel obstruction, told by GP at that point might it was nothing more than a touch of IBS! Ended up in an ambulance and the rest is history! I’ve had shockingly poor care I’m sad to say.
Kizzygirl - Any B12 supplements, protein drinks or foods fortified w/ B12 taken prior to B12 or Active B12 testing will skew your results. Your active B12 results are very low. I have been told active b12 below 75 cannot rule out deficiency. Yes get in touch with him as soon as possible and let him know you were not advised to take B12 after the surgery and are suffering B12D symptoms. I can relate to the nausea , gastritis & weight loss. Once I was given the proper injection schedule much of the nausea & gastritis subsided. I do occasionally experience them.
I refrained from taking any supplements at all for 6 weeks prior to doing the Medichecks blood tests. I’m now using the B12 and Vit D oral sprays in the hope that a little might get through. Lots of knowledgeable people on here which I’m very grateful for.
KIzzygirl oral lichen planus is known to be found in people with B12D. I have attached a link which speaks to this issue: regular and continuous effective vitamin B12 therapy combined with deficient hematinic supplement therapy can not only lead to complete remission of all oral symptoms in our GPCA-positive patients sciencedirect.com/science/a...
KIzzygirl Please know B12 deficiency isn’t just a "simple" vitamin deficiency. It is a demyelinating condition that erodes the myelin sheath. The myelin sheath is the layer fatty insulation that covers the nerves. Wherever the myelin sheath is eroded, this causes nerves to be exposed and they die. This results in the brain not being able to send clear signals. Every symptom is caused by the erosion of the myelin sheath. B12 deficiency affects all 5 senses (taste being one of them) as it affects the sensory and peripheral nervous systems. We have billions & billions of cells in our body that require B12 reason so many symptoms are associated to a deficiency. I learned all of the above from the group I recommended you join.. Never underestimate the power of this vitamin or let medical persons underestimate.. .
Could I ask how much oral B12 spray you take? This notion of passive absorption is very hit-and-miss. For some it works fine but others, like myself, need massive amounts - in my case 25000 micrograms at a time - for any absorption to take place. Also vitamin D3 is fat soluble so you would need to take it with at least a small amount of fatty food.
I’m using the BetterYou spray which gives 1200 micrograms in 4 sprays. It’s probably not enough though! I have just made an appointment with a nurse led beauty clinic which gives B12 injections. It feels good to take some control over my own health and I shall bypass my GP, he wasn’t prepared to help me anyway.
It can't do any harm to increase the amount by quite a lot - I use 25000 micrograms when not injecting. There is no danger, no overdose.Some people get a bit of redness of the skin or raised heart rate. I don't know what's in yours but the downside to mine is it contains sorbitol which affects my bowels.
I hope you can see a gastroenterologist about this. It’s been my experience you’ll have better luck with a specialist when it comes to B12 absorption issues. People who’ve had gastric bypass surgery have issues with it too. Take care!!
I myself am trying to find out if I am B12 deficient after being dismissed by my doctor (and I don’t have your history of surgery). I understand the need of many, if not most, on this forum to self diagnose and to self treat or use the services of non-medical professionals, however I do think it is important to get a true medical diagnosis and to have any treatment which you find works added to your medical history.
My reasoning is this, should you suffer another medical event which requires hospitalisation or as you get older require other care, then any self treatment or “beauty” care will probably just be ignored (or even be unknown) by the professionals tasked with treating you. This would be harder to do if it is a matter of record (although it could still be ignored).
I completely agree with you. I use Medichecks to do my own blood tests when my GP refuses to test me and I always show the practice my results and ask for them to be added to my medical record, I don’t know if they do this or not! Usually they refuse to recognise private blood tests although interestingly during the pandemic they were only too happy that I did my own and uploaded them!
I always tell my doctor that if he won’t help me then I will find someone who will.
I have just received my PA tests back from Medichecks and they confirm PA with extremely high levels of intrinsic factor antibodies! I will go back to the GP but it’s currently 7 weeks wait to see a doctor here. In that time I will have had my loading doses (which I have paid for) but I will certainly tell the doctor what I have done and why I was forced into having to do it. We have to advocate for ourselves because nobody else will!
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Raised MMA result
NHS v Medichecks blood results?
Advice moving forward?
Yet another GP trying to stop B12 injections
B12 injections
