Pernicious Anaemia Society
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Vegetarian b12 2000+ help needed

Hi , if I post all my details I hope someone can help.

I'm a headteacher who only works , too tired for any play . No children of our own ( see below) so when I'm not working (60hrs a week 45 weeks a year) I'm trying to rest to go back to work , never go out , never see my family anymore. Hate going out because I'm so tired I have to make excuses to leave early which causes husband arguments .

I have a history of on/off chronic fatigue after being diagnosed with cfs when I was around 22. I've had better times and worse times.

I was originally tested for b12 as part of endo tests to work out why I had an itchy inflamed bottom (blush) 18 years ago in 1998. They ended up saying it was b12 deficiency and I had two b12 injections and then it was discontinued after blood tests showed it was high and never followed up. However bottom issues carried in for another 14 years until I was eventually diagnosed with flexor psoriasis- tiny bit of right steroid and 14 year nightmare over ..

Symptoms :

B12 2000+ ( not supplemented for 6 months +)

Iron in low end of range but normal

TSH in normal range

Slightly raised liver tests

Borderline red cell size but other FBc ok

( though I hardly drink at all due to reflux)

Extreme tiredness - not off work , but no life other than work

Not reacting well to stress, veering between mild depression to anxiety

Memory issues

Can't walk down stairs without gripping hold staircase and taking one step at a time as if I'm going to fall down

Last two years difficulty walking without concentrating , I feel I have to concentrate to walk normally , I am self conscious about it

Massive weight gain as I feed myself with sugar to try to eliminate brain fog ( 6 stone +)

Stomachs issues - reflux daily ,( hiatus hernia -,took ppi ant acids for ten years until xmas last year when I stopped as i had a low iron blood test and found it was reducing absorption of everything), mild diarreah daily, food gets stuck in my throat and I have to vomit even at work, I often "breathe" in food rather than swallowing it and end up with coughing fits

Teeth grinding at night time, have to wear mouth guard

Ankle swelling in slightest heat/ in activity

Strange cramps in fore arm leading to hand turning into claw

Rapidly decreasing eyesight ( I'm 48) night blindness , cant drive well in the dark

A lot of eyelid twitching

Feet hurt with little walking - in the morning , or if I get up in the night , or if I have been sitting / driving for more than 20mins, I can hardly walk at all

All my joints hurt ( no RA) GP thinks it's osteo but I'm sure you can't get osteo in all joints at same time ( when knee cartledge done 4 years ago told there was no sign of osteo) very stiff joints adding to difficulty walking

On going back and sacro issues and right hip - pay to see a chiropractor every three weeks for deep massage to release muscles - time off work when it's so bad I can't stand up.

Fertility issues despite 4 rounds ivf failed . Miscarriages . No one ever mentioned my massively high b12 . Current general perimenopause.

Breathlessness on even mild moving ( despite I was v fit cycling up hills etc up to 2 year ago- now too tired)

An array of animal allergies and asthma ( not linked to breathlessness)

I have a telephone GP appointment on Thursday after I ( thanks so much to this site) found out that after having high b12 for many years and repeatedly seeing the doctor and always told "oo your b12 is very high but I think that's ok " - even by the local authority area lead gp! I went to see go last week who was not happy that I was questioning him. I demanded mma and homocysteine and active b 12 tests.

I was hoping there might be anyone out there who might read my results and offer more comments I can give to my gp on Thursday.

Much appreciated

31 Replies

What amounts were you supplementing with?

Serum B12 doesn't really mean much unless it comes out low if you are taking injections - so possible that the injections shouldn't have been stopped. If you started supplementing at that point with high dose oral/sublingual (meaning 1000mcg a day +) then that could have kept your levels high despite an absorption problem.

High levels of B12 can have a number of causes - and you definitely need to follow up on the liver function results.

What were your symptoms in 1998? and did you notice any improvement from the injections then?

Dietary deficiency is actually quite rare - even in vegetarians - unless you are also consuming no dairy/egg - as the body is very efficient at storing (in liver) and recycling B12 through the ileum. Generally it is problems with the (re)absorption in the ileum that lead to a B12 deficiency.

The acid reflux may have been a sign of decreased rather than increased stomach acidity - which would be a good indicator for an absorption problem.


Thank you for replying , o had b12 injections about 14 years ago , just two injections , since then I have taken multi vits ion and off, but not this year at all as I'm trying to get genuine readings - with and without oral supplements my b12 is 2000+

I do eat dairy and egg, but apparently they don't absorb well. With that and the PPIs I would have expected a low normal range rather than off the scale high range.


Probably a silly question (as you are vegetarian) but do you know what your Folate level is as this is essential to process the B12?


Hi clive , I think folate was high too but that wasn't tested for in last round


thanks for replying on the supplementation - the levels you were taking wouldn't have made any difference if you had an absorption problem so don't think that is likely to be the problem.

Definitely follow up on the liver results

Another possibility is ileo-cecal valve - its a one way valve between small and large intestine - if something happens and it isn't closing properly the symptoms have a significant overlap with B12 and a number of other conditions - but it is quite easy to manipulate it to close it.

you may find this article informative


Sorry to divert you slightly, but you mentioned the ileum in relation to absorption. A friend of mine had an ileostomy a few years ago after years of ulcerative colitis. She also has psoriatic arthritis. She has had Vit D deficiency, but now has low red and white blood cell levels and low platelet levels. She has had awful infected mouth ulcers for weeks. I have asked her to check whether she has ever had a B12 test, but could the ileostomy be causing absorption problems. GP doesn't know what to do

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Hi Chris193

The ileum is the part of the digestive tract where B12 is (re)absorbed so yes it is possible your friend may well be B12 deficient.

This NICE document mentions ileal resection as a possible cause of B12 deficiency so I think your friend needs to have her B12 levels tested if this has not already been checked.

I hope your friend feels better soon.


Hello hedgehog2893, in many ways you have just written my life history although my b12 didn't reach 2000 until I had regular injections. And I have always been very thin. After diagnosis of pernicious anaemia and regular injections the the neuropathy and fatigue became manageable and life started again. The reflux, vomiting , difficulty with digestion continued for a further 40 years until 18 months ago a friend pointed me in the direction of gluten free. A miracle occurred. Muscle cramps, pains, migraine, have disappeared AND I can now eat adult sized meals without vomiting or reflux. Over the years I have had countless endoscopies and X-rays to no avail. My doctors now agree that I am probably coeliac and if not definitely gluten intolerant but have now reached an age where the tests needed for definitive proof would probably do more harm than good. I wonder if any one on this site could tell us if it is a common occurrence for these two conditions to coexist as I have noticed reference to wheat intolerance on a few posts. Gluten free is not easy and don't try it before you have spoken to your doctor but do ask for tests. Incidentally the coeliac friend who recognised my condition has similar weight issues to yours.


there have been studies that show a correlation between glutten problems and B12

will try to find a link to one later in the day if I remember


I would appreciate that.


links to some articles

which is included in this list of articles

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Thank you.


There is a link between ALL autoimmune illness and and gluten, not just PA. I have hashimoto's, which is an autoimmune thyroid issue and going GF a few years ago was the best thing I ever did. Gluten will not only keep the fire in your body from continuously attacking the body but it will also keep your vital vitamins low, even if you are supplementing. I had vitd, iron, ferritin and B12 problems but since going GF my vitd, iron and ferritin are now where I want them and my thyroid meds are working a lot better than they was. I will also add that if you have a problem with gluten you may have the same problem with dairy.

Have a good look around this site and listen to his talks with other well informed people as it really is an eye opener. He states that the gluten problem comes first which in turn causes the autoimmune reaction in the body.

Another great source of information is a lady called Izabella Wentz, who is a pharmacist so is medically trained. She may deal mainly with thyroid illness but she has also done a lot of work on vitamin deficiencies, gluten ect.

Both these sites have a mind field of information regarding all things autoimmune and how to live with them. Hope this helps.

Moggie x


Thank you. The suggestion that the gluten problem came first would certainly seem true in my case even though the PA was diagnosed 40 years before the coeliac. If only...

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Hiiam 46 what your sytoms are sugesting is exacly how ive been feeling only diffrence is i have b12 injections very 3 months and i cant not walk unadied due to constant dizzyness and balance and joint pain everywhere and extreme tiredness over the passed 3 years ive seen ent and neurologist to no diagnosis every consultation has had a 8 month waiting time and in march this year my dr gave me a back xray and it shows osteoarthritis in upper and lower spine so he referred me to a rumetologist my gp also said i could have fibromyalgia so after waiting 6 months my appointment s tommorow. Iam 46 years old and iam now disabled x


Oh Denise I'm so sorry , I hope you get positive help tomorrow x


Thankyou xx

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Maybe this is a bit obvious but have you had your thyroid checked. There are many crossover symptoms so hard to differentiate between the conditions.

DDoctors will often say that it is normal when in fact it is struggling to cope.

Thetests you need to ask for are

TSH, (needs to be low in range 1 or below.)

Free T4 (top quarter of range)

Free T3 (top third of range)

Thyroid Antibody tests will also show if you have autoimmune hypothyroidism


Yes I was also going to say it sounds like hypothyroidism as songoutloud suggested. Copy and paste your question onto the thyroid site that's on here too.

Yes you will need to know all the numbers for that too....but I would think that is your main problem it leads to lots of horrible symptoms, and as a sufferer I can see that.

Good luck, I feel for you, it sounds horrendous.


I'm so sorry you've had such a difficult time Hedgehog and, although as Gambit has said, a good idea to have liver checked, your symptoms do appear to indicate B12 deficiency that, as a long term vegetarian, could be masked by high folate.

The symptoms are very subtle, can take years to manifest, be misdiagnosed and wreak havoc with your body. This happened to my sister (vegan/vegetarian with Hashimoto's, various allergies and high folate) who was misdiagnosed for years with CFS/ME, (at one time in a wheelchair) then dementia, but turned out to be severe B12 deficiency.

Very few GPs understand the symptoms of PA/ B12 and are only looking for anaemia and large red blood cells, which is the last stage, may never appear or, as already mentioned, be masked by high folate.

Here are some helpful sites you may not have seen:

There is also an excellent film on the above site with excellent information including folic acid and vegetarianism. :

The above latest BMJ research document has a useful summary to show GP and important information re. blood tests - bottom of page 4 under 'how is response to treatment assessed'.

Many researchers believe leaky gut/intestinal malabsorption is the source of autoimmune disease and, as others have already mentioned, a gluten free diet often helps. I'd recommend reading Dr Kharrazian's books who confirms this, is highly qualified, writes manuals and lectures to postgraduates on neuroscience.

PS. I found daily spoonfuls of sauerkraut (better than any other probiotic I'd ever tried) and g/f diet has meant the gastric, reflux, H/pylori, IBS, etc. issues that plagued me for years, have disappeared.

I'm also wondering about thyroid tests as this is another area in which many GPs are failing to diagnose and treat with unreliable tests - more excellent Information on the Thyroid UK site.


I'm no doctor obv...but since getting np help and decreasing health I have been doing my own research and there's a lot out there to support the idea that gluten is the route cause to all Immunity iam trying this diet out myself I think I may be accidently cross contaminating due to others still eating bread in the house but I do find i don't get anxiety after I eat anymore and feel less achy all the time. .Iv also been doing more research and finding out that corn is just as bad ..i did an intolerance test and corn ..milk.. and cocoa among other things including candida albicans as high intolerance s for me. . So trying to cut that out to...i also have PA and like you had itchy problems and still do im starting to think I may not be getting better due to a yeast overgrowth which I have also suffered with for years repeated infections ..a lot of yeast symptoms overlap to if it's out of control like tiredness fatigue ..tingling ..Low immune system. Acid problems.


You can get quite high results for a B12 serum test if you have pernicious anaemia because of the stupid way the test is designed.

The assay can suffer interference in samples with high amounts of anti-IF antibodies, giving as artificially high result for B12 levels. Of course, it is people with PA who are going to have high levels of these antibodies and who really need an accurate determination of their serum B12.

One of the reasons why doctors are told to treat symptoms, not numbers. Because ofttimes the numbers are just wrong.


You say results are normal, but what were the actual latest results, with ranges?

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I have bought mr Hooper's latest book to help - thank you all.

My thyroid is around 2

Re gluten free . I was diagnosed with cfs aged 22, in 1990, I immediately cut out dairy and gluten for a year or so and recovered so much more quickly.

I turn reintroduced and had no problems . I don't eat a lot of gluten - never gave bread in house etc and I definitely have the digestive enzymes lactase which breaks down dairy. In the last 26 years I have spent a lot of time and money on alternative therapies , supplements , but now is the time for NHS action as nothing has worked long term.

Whoever put a horizon link on another page - thank you - I have been looking for something like this for years , if I get no where tomorrow I will go the whole hog and have all b12 , active b12, mma, homocysteine , t3 t4 tested privately even if I can't pay mortgage this month .

So disappointed that I pay sooooooo much national insurance each month and get this service. If I wasn't working so much I would have had time to get to moan to gp more often and might not have got to this stage !!!


Hi Hedgehog, re active b12, mma and plasma homocysteine blood tests, I have just done that very thing for my five year old son. Gp said he could not order them so I contacted St Thomas' Hospital [department is called Viapath] directly and ordered them online. I received the test kit this morning and have arranged for our local hospital to take the blood. Then your just post the bloods back to St Thomas'. Cost was about £150. Although I will have to pay my hospital for taking the bloods and pay for the postage back.


Thank you , did your son have high b12?

The outcome of my GP app today is that they will write ( not refer) to the endo and ask advice based on my symptoms. I referred him to the advice to GP in treating symptoms but he said mma and homocysteine he hadn't heard of .... i out him straight .

So will contact st Thomas and get our school nurse to take my blood as I'm not prepared to wait any longer . Who did you contact at st Thomas ?


Yeah, I was expecting it to be low because I have problems with B12 absorption and thought he might be the same. He is about to be diagnosed with Autism and I just want to look at anything that might not be helping matters, so I asked for a full blood count to be taken. The GP put the high B12 reading down to me giving him supplements but I thought it was odd that his iron stores were low although he was taking iron too. After doing some research I discovered many Autistic children show high levels of B12 in their blood but very low levels in their brains. I then read that you can have high readings of B12 in a blood test but not in the form your body can uptake. That led me to the Active B12 test. My GP also had never heard of it and had to Google it! Sorry for the ramble. Basically if you Google 'Viapath St Thomas' Hospital' it will be the first result. On the website click on 'What We Do' and then on 'Nutristasis Direct' and then 'View and Buy Tests' you can then select the tests you want and pay for them online. I ordered the Active B12' which includes a plasma MMA test and the Plasma Homocysteine test. Hope that helps.


You're a star thank you . I lead a school for children with behaviour problems but no diagnosis ( when they arrive) I'm very interested in the link between poor diet and autism that seems to develop as they move towards teenagers , it's not the clear cut diagnosis that you'd get at age 5/6 , some of my pupils get it at 15 after we have pushed for years . Most of them have challenging home lives / diets/ boundaries and their behaviours are often mistaken for poor parenting . Thank you so much for this info, it might just be the thing I can use to help support my parents 😊

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Wow, that must be a really full on job. What age range do you teach? If there is one thing this journey has taught me it's that you really do have to take responsibility for your own health. We have also been on an elimination diet [gluten,dairy and refined sugars] for the past two months because my sons digestion was not good [tummy pains and yellow sloppy[sorry] poos]. That has completely changed. He would also wake up very badly in the mornings ie sad or angry, and that has completely gone. Strangely my Husband has said the diet has made a massive difference to how he feels in the morning. I think there is so much more that needs to be looked into in these situations. There seems to be a massive link between gut problems, behavior [ie anger,anxiety,depression etc] and vitamin deficiency. I think there is research being done, just wish I was bright enough to understand their findings!

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Having finished reading Mr Hoopers book on B12 I am reminded that I was actually given the Schillers test with radio active B12 about 18 years ago which, I think, resulted in a diet related outcome of B12 deficiency - with my veggie diet blamed (it was really low) however, in at least the last 6 years it has been off the scale high - is it possible i could have developed PA?


have just updated all my blood tests if anyone wants to look!


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