Pernicious Anaemia Society
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Is it possible to have pernicious anaemia with a B12 of 550?

Hi,

I’ve popped over from the thyroid forum for a bit of advice. I apologise for the novel I’m about to write!

A bit of background first. I was diagnosed with Hashimoto’s in Feb this year with a tsh of 147 and along with that Vitamin D deficiency, low folate and iron deficiency anaemia although at the time my B12 was in the high 600’s. I was given thyroxine and until August time I plodded along taking the drugs and supplements including sublingual b12 and a b complex gradually getting a little better and realising how bad I felt before.

I have had peripheral neuropathy for about 6 years but as I had guillaine barre syndrome(also an autoimmune condition) 20 years ago. This affects every nerve in the body so I put this down to this although I know realise my thyroid had slowly been dying for years.

This as well as brain fog, numbness in my lips and nose, tingling everywhere and fatigue have never really gone away and more recently I’ve developed constant nausea, and have zero appetite resulting in losing over 3 stones in weight. I need to lose it having put on a LOT of weight in the 4 years it took to realise I needed to ask for another tsh to be done after accepting that a tsh of 6.5 was normal 😡 but not in this way though!

I’ve been taking Liothyronine as well as thyroxine for about 2 months and I feel a little better but I’m now absolutely text book perfect with my thyroid bloods. I’ve had bloods for just about everything, a short synacthen test, abdo and pelvic scans, a brain mri, an endoscopy in the summer diagnosed gastritis and a hiatus hernia but the nausea and loss of appetite developed a month or so after this. I’ve been seen by gyne, endocrinology and gastro and my gp is now at a loss as to what to do.

The ONLY thing I can think of is that as my recent B12 came back at 550 so it has dropped despite taking high dose sublingual B12 as that pernicious anemia might be the culprit?

I have taken ppi’s for a number of years due to severe reflux which I know isn’t ideal. With the GPs supervision I’m hoping to come of them slowly but we will see.

I’m now getting pretty desperate as the constant nausea in particular is exhausting and I appreciate using guidelines I am well within the normal range but could this be my problem?

Is it worth getting a private test for active B12 or intrinsic factor done or am I just wasting my money

Sorry if I bored anyone x

33 Replies
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Thanks for your reply,

They saw what the said was gastritis during the endoscope am I right in assuming that is different?

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I know they did a h. Pylori breath test at the same time with was negative and I although I saw the gastritis on the screen I didn’t see which part of the stomach it was in(to busy trying not to vomit!) and they didn’t take biopsies from the stomach lining that I am aware of x

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Lets unravel things a bit

PA is a form of auto-immune gastritis that specifically attacks and destroys cells in the stomach. As a result it severely restricts the bodies ability to absorb B12.

Some B12 is absorbed passively throughout the gut but this averages 1% of total absorption, but it does mean that taking mega doses of B12 - which is what most sublinguals are - can result in enough B12 getting into your blood.

The symptoms of PA are the symptoms of the B12 deficiency that it causes

PA isn't the only thing that can cause B12 deficiency - there are other absorption problems. There are also other things that can go wrong.

Serum B12 only measures the amounts of B12 in your blood. Getting B12 into your blood is one step in metabolising B12 - the other steps are it getting from your blood into your cells and then it being used in the cell. Things can also go wrong at either of these steps leaving you with either no B12 at the cell level, or unable to use the B12 you have properly.

High serum B12 can cause problems that stop B12 passing from blood to cells. Problems with processing B12 in your cells are rare genetic disorders.

The usual tests to see if there is a problem with B12 passing from your blood into cells are looking for waste products - homocysteine and MMA - that will build up if your cells don't have enough B12 to convert them back into useful building blocks. Both will also be raised by other factors - notably folate deficiency in the case of homocysteine and renal problems in the case of MMA, so have to be done in a context.

If your hypothyroidism is auto-immune that considerably increases the possibility that you have an auto-immune gastritis (partly because the cells in the thyroid come from the same embryonic cells as the gut.

So in answer to your question. Yes it is possible to have PA and have a serum B12 of 550.

IFA is a specific test for PA as a source of a B12 deficiency but is prone to false negatives 40-60% of the time so a negative is a long way from showing that you don't have PA. It can also give false possitives if done two close to supplementing B12 - exactly how long you need to wait depends on the test method.

It is also possible to be B12 deficient with a serum B12 level of 550 (?pmol/L or ng/L) and there are some test that can be done to clarify this. Active B12 and IFA are not tests for this. MMA and homocysteine would be more appropriate tests but need to be done in a context that rules out other reasons for raised levels.

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Thank you for your reply

Sorry I should have clarified I am in the uk and it was ng/L

It is an autoimmune hypothyroidism I have and I also had guillaine barre syndrome which is another autoimmune condition.

Do you have any suggestions as to what to do next? X

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ask your GP what they now about thyrogastric syndrome.

ncbi.nlm.nih.gov/pmc/articl...

you obviously have problems with absorption of iron and folate and the guidelines on folate deficiency are clear that problems absorbing folate are also likely to mean problems absorbing B12. They can access the guidelines through th BNF but they are also available here

onlinelibrary.wiley.com/doi...

let GP know that you have been using high dose oral B12/sublinguals and ask them if they will consider B12 shots as a trial.

As wedgewood says it is more likely that acid reflux you had in the past was actually due to low stomach acidity rather than high stomach acidity, in which case taking something acid (eg lime juice in water) could well help with that symptom.

Both PPIs and low stomach acidity from an auto-immune gastritis will also interfere with your ability to absorb levo which I presume you are taking for the thyroid so it may mean that your levo levels will need to be adjusted downwards.

Please work with your GP on coming of the PPI - definitely don't do it cold turkey.

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Thank you so much.

I am coming if the ppi’s with the gps help. Very slowly and he’s given me ranitidine 300mg if I need it. I also intend to start taking betain hcl when I’ve come off them and I’ve got some kefir milk grains that are currently growing all there good bacteria. I’m giving them a week of daily milk changing before I drink it though!

My gp is usually really good and to be honest I’m a bit reluctant to push the b12 injections with him, I may order some from goldpharma and try it first then confess if it helps. He already monitors me quite happily while I self medicate with T3 x

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just watch out for signs that you are moving from hypo to hyper and go back to the doctor if that is happening

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I will, thanks again.

I’ve just had a good read of the article you linked and think I might print it out and drop it in to see what he thinks. Anything to stop me stalking him on a weekly basis would be good x

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P.A. results in low /no stomach acid ( Hypochlorhydria/Achlorhydria ) This upsets the stomach flora . In my case this led to nausea . I took to eating naturally formed probiotics like home made organic sauerkraut , kimchi etc and improved no end . . But one can also take probiotics in capsule form . This really helps the stomach flora . It might help your nausea . You probably know that PPIs deplete your absorption of vitamin B12 .

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Thank you,

I do know about the ppi’s now!and I’m about to try and slowly come of them

I’ve also bought some kefir milk grains x

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I have lots of deficiencies that if not caused by the ppi’s haven’t been helped I should image.

I’ve also been of sick from work for the last 3 months partly due to constant nausea that I have yet to find a reason for.

If I can get rid of all the medication that I was given when I went undiagnosed with serve hypothyroidism for so long (tsh 147) then I’ll have tried everything.

If I have to stay on them I will but I have to try x

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My gp has given me ranitidine to help but I’m hoping that my reflux was due to low stomach acid and although it might take time I can fix this

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I don't understand how acid Reflux can be due to low stomach acid?

Unresolved rising stomach acid can cause damage (as it did with me) and serious conditions including Cricopharyngeal Pouch; Cancer . . .

My PPI doesn't stop my Levothyroxine working and I'm not on a high dose.

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Mary-intussuception, the symptoms of low stomach acidity and high stomach acidity are very similar and both include acid reflux.

As I understand it acid reflux occurs in low stomach acidity because the mechanism that shuts down the flow of stomach acidity needs a certain level of acidity. If it doesn't stop then you get a 'feedback' for want of a better analogy.

ncbi.nlm.nih.gov/pmc/articl...

The indication for gastroscopy

The commonest indication for gastroscopy was epigastric pain, which accounted for 87 (91.2%) referrals. Two patients were investigated for anaemia, two for previous haematemesis, two for odynophagia, one for reflux symptoms and one to confirm peptic ulcer healing.

Patients’ symptoms were interrogated using the ‘Leeds Dyspepsia Questionnaire’. The commonest symptoms were reflux related (heartburn/regurgitation), which accounted for 46 (48.4%) patients. Of the remaining patients, ulcer-like (indigestion) symptoms were described by 31 (32.6%), dysmotility-like (nausea) symptoms by 4 (4.2%) and 14 (14.7%) patients could not identify a predominant symptom.

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Hi Gambit62

Thanks for posting. Stopping PPIs has been the best thing I’ve done!! Not a bit of discomfort of bloating or reflux although I did come off them very gradually and replace with HCL with Pepsin instead. Years of ulcers, gastritis and bloating did not go away with PPIs for 30 years! Have. Good day x

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I understand Hiatus Hernia is reason for GORD also 'silent' Reflux ie Laryngopharyngeal Reflux

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Hi Emyloulou I had bad indigestion a few hours after every meal and reflux too very often, as a 'grin and bear it' person I took nothing for it and did not go to a GP.

When I started having B12 injections, I also took a good probiotic, ate organic sauerkraut and now drink lemon juice and both indigestion and reflux have gone completely.

I was given this advice by a member here - thanks wedgewood.

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Thank you

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Emyloulou

I would use HCL with Pepsin over any gaviscon or ranitidine as they stop acid production and we need it. It does need a very gradual reduction off the PPIs and you can get a rebound situation . People lose their stomach acid as they get older .. we don’t need to strip it away completely. I am so much better without PPIs. Apple cider vinegar also good. Good luck with everything x

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Just a quick question. Would you take the hcl/pepsin as soon as I start to lower the ppi’s or wait until I’ve completely stopped? X

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Some people need to take PPIs.

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Mary-intussuception, please note that Emyloulou has advised that she is working with her GP in relation to PPIs.

Whilst it is true that people can need to take PPIs if needed to suppress acidity, eg to allow the gut to heal whilst treating the consequences of h pylori infection, long term use of PPIs is not recommended except in exceptional cases.

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People with Barrett's Oesophagus need it long term to protect from Cancer. As do others for other reasons.

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No body is saying that they should never be taken. Indeed in some circumstances they are essential however I still despite numerous tests and perfect thyroid bloods am very unwell so I’m trying everything to see if it makes a difference x

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Diverticular disease, Chrohns and Colitis can all cause malabsorption.

Chronic constipaton could lead to Diverticular disease.

Being left undiagnosed and untreated Hashimoto's & Hypothyroid (as I also was) can result in long term constipation and therefore possible Diverticular disease.

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Hi Emyloulou

Not boring one bit!! What a shame you have had so many things happening at once. I’m glad you have got T3/T4 to treat your Hypothyroidism. You must have been so ill with a TSH of 147! Mine was 4 a few times and that was bad enough. About the PPIs .. I was also taking them and on good advice came off them successfully. No doctor ever suggested stopping them !! I hadn’t realised that the symptoms of high acid in the stomach can be the same symptoms of LOW acid. I came off my Omeprazole / ppi very slowly and replaced them with HCL with Pepsin to put some acid back into my stomach in order to absorb food and supplements back into the body. (Acid needed for this).Especially my thyroid medication. My stomach has never been better after two ulcers and severe bloating whilst on Omeprazole. I don’t know about b12 but others will here....but I supplement with sublingual b12 when mine was 300 (200-900) I also take Vit D and iron well away from other supplements and Vit C. Glad you are feeling better than before and if your thyroid is working well that should make a huge difference to you. Take care Jane xx

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Thank you Jane,

To be honest I think it’s all been ticking along for years and then as my hypothyroidism became treated other things have had the opportunity to rear their head!

Medication/vitamin timings are a nightmare as I had iron deficiency anemia, folate and vitamin D deficiency all diagnosed at the same time as the naughty thyroid was found. A few alarms on my phone are needed!

More than anything it’s this constant nausea which not 1 of the 7 antiemetics I’ve been prescribed touch’s for mor than an hour, exhaustion and numbness that is causing me issues now. Which is why I was thinking B12.

I’ve been taking sublingual B12 since February and my level is going down not up.

The ppi’s are on the hit list, I have betain hcl in the cupboard, kefir grains being nurtured until the milk is drinkable and the ranitidine is only if I’m really desperate x

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Hi,

Link about low stomach acidity

drmyhill.co.uk/wiki/hypochl...

PA with B12 levels 500ng/L?

My understanding (I'm not a medic) is that it is possible.

Risk Factors for PA and B12 deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

I'd suggest contacting PAS (Pernicious Anaemia Society) for more info. It may be helpful to join PAS.

PAS

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769 717 answerphone

Symptoms of B12 deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

Having auto-immune conditions in the family can increase the chance of developing further auto-immune conditions.

Coeliac disease

Have you ever had tests for Coeliac disease? See following links.

coeliac.org.uk/coeliac-dise...

nice.org.uk/guidance/ng20/c...

B12 books

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK B12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12; An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive book about B12 deficiency with lots of case studies.

Link about what to do next if B12 deficiency suspected

b12deficiency.info/what-to-...

Link about writing letters to GP about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 in link is about under treatment of B12 Deficiency with neuro symptoms.

Point 5 is about being symptomatic with an in range B12 result

I felt there was a lot of useful info in above link. See link to UK NEQAS B12 Alert.

UK B12 documents

If you're in UK, I'd suggest reading all these.

BMJ B12 article

bmj.com/content/349/bmj.g5226

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart makes it clear that in UK, patients symptomatic for B12 deficiency should have an Intrinsic Factor Antibody test (IFA) and start initial b12 treatment even if serum b12 is within range.

IFA test can help diagnose PA but test is not always reliable and it is still possible to have PA even if IFA result is negative/normal range.

BNF Chapter 9 Section 1.2

UK GPs will probably have a copy of BNF on their desk.

bnf.nice.org.uk/drug/hydrox...

cks.nice.org.uk/anaemia-b12...

Useful summary of B12 documents in third pinned post on this forum.

Links about blood tests

Supplementing prior to tests may affect results and make it difficult to get a diagnosis.

b12deficiency.info/b12-test...

patient.info/doctor/macrocy...

labtestsonline.org.uk/under...

patient.info/doctor/folate-...

patient.info/doctor/iron-de...

Having an IFA test close to a B12 injection may cause false results. Not sure how B12 sublinguals may affect IFA test. See section at bottom of page in link below.

labtestsonline.org/understa...

Some medicines have been linked to B12 deficiency. Some have been linked to folate deficiency. See links below.

pulsetoday.co.uk/clinical/m...

ncbi.nlm.nih.gov/pubmed/135...

nhs.uk/conditions/vitamin-b...

b12deficiency.info/what-are... See list of drug induced causes of b12 deficiency.

I have written more detailed replies recently. May be worth searching for them.

Good luck with getting answers.

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Thank you so much for that. I’m going to have a good read later.

I have been on the pernicious Anaemia Society web site but I didn’t think of actually contacting them. I think my major problem is that I have a lot of the neurological symptoms and have had for about 5 years many of them could be put down to the guillaine barre syndrome I had. Numbness and falling over my own feet being the main ones x

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Have you seen a neurologist recently?

B12 deficiency can be associated with many neuro problems. One neuro symptom sometimes associated with b12 deficiency is proprioception difficulties. This means a loss of awareness of body in space.

Very important that any neuro tests are carried out by a qualified doctor.

Did neurologist ever do any neuro tests with your eyes closed eg romberg test and walking heel to toe with eyes closed? These tests may show up proprioception problems.

"Numbness and falling over my own feet"

PAS article on Neuro Consequences of PA

pernicious-anaemia-society....

Has SACD been excluded as a possibility?

PAS article on SACD on PAS website.

pernicious-anaemia-society.... See page 2.

Blog post that mentions SACD

martynhooper.com/2010/09/21...

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I haven’t seen a neurologist since I was discharged from the hospital all those years ago and the only thing I’ve had done a few years ago was nerve conditions studies which showed some long term damage that was put down to the guillaine barre.

I don’t recall ever having the tests that you mentioned but I do know I’m not steady at all if I close my eyes and have always had to look at the floor when I’ve walked.

Unfortunately I can’t access the PA article as I’m not a member but having a read of the blog I’m nowhere near that bad thankfully.

Would neurological problems cause the constant nausea I’ve had for the past 3 months though? I’ve tried 7 different antiemetics and only ondansatron works and that’s only for an hour at the most.

Thanks for your help, I really appreciate it x

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B12 is a Vitamin that is very hard to overdose on. Get a 1000 yg intramuscular shot and wait two days ( you may start feeling better, sooner). I read about the 3 forms of b12, they need to be metabolized into a form your liver can use. The problem might be that your liver is unable to convert it. I have had blood levels of b12 that showed up super high (over 10000 with conventional lab test) (my doc, a super bright guy was unconcerned) but I still had symptoms that went away after a series of b12 shots. The best way to measure b12 is not the standard blood level lab test but a lab test that measures intracellular b12 Levels that will give you a more truthful picture of what is going on.

Don‘t be afraid to take b12 shots to find out if they help. They are inexpensive compared to all other options and b12 is very safe to use.

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There are more than three types of B12. In common use are methylcobalamin, adenosylcobalamin, cyanocobalamin and hydroxocobalamin. The first two are the forms used in the cell, the second two are the ones used for injections most of the time. None of them need to be metabolised in the liver.

Whatever type is B12 you put into your bloodstream it is taken up by the cells, where the first thing that happens is that the top ligand (methyl, adenosyl, cyano or hydroxo) is removed to form cobal(II)amin. This is then transported to the bit of the cell where it is needed where it is converted to the required type of B12 for the job In hand.

There is no lab test that can measure intracellular B12.

B12 in the blood is bound to one of two proteins, haptocorrin or transcobalamin. Only B12 bound to transcobalamin can enter the cell, and there is a test that measures only the transcobalamin-bound B12. But that doesn't tell you if it's getting into the cells.

For that you'd need an MMA or a hCys blood test.

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