Pernicious Anaemia Society
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B12 Deficiency

Hi,

I'm new to this forum- just wanted to clarify a couple of things that are confusing me.

I had a blood test last week- my serum b12 was 165 (don't know the reference range but GP said this was low).

He didn't really seem to know what to do next- googled it during the appointment which made me a bit sceptical of his advice.

Also- Last year I had iron deficiency anaemia (Hb was 10.1 and Ferritin was 2). I supplemented for about 6 months and was no longer anemic and my Ferritin went up to 35 (September). My Ferritin has now dropped back down to 9 (but my hb is normal). I am also slightly deficient in vitamin D.

GP advised that I take oral b12 and iron supplements for 3 months and then have my levels retested. He has said they can do a pernicious anaemia test in 3 months as well. The GP didn't seem to think there was any connection between the deficiencies and said several times that it is likely diet related, however I eat a healthy diet including meat and dairy. I am concerned that this would indicate some kind of malabsorption.

My questions are-

- is oral supplementation effective of should I be offered injections?

- Would supplementing b12 affect the accuracy of a pernicious anaemia test (or are these unrelated)?

Thanks in advance

16 Replies
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Hi kate894 personally (and I'm not a medically trained person) I think your doctor should try and identify why your B12 is so low.

Anyone at any age, can become B12 deficient. However, certain people are at an elevated risk. They include the following:

Vegetarians, vegans and people eating macrobiotic diets.

People aged sixty and over

People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).

People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications that can interfere with B12 absorption including certain contraceptive pills.

People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.

People with a history of eating disorders (anorexia or bulimia).

People with a history of alcoholism.

People with a family history of pernicious anaemia.

People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).

People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients.

People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.

Women with a history of infertility or multiple miscarriages.

You have ruled out the vegetarian and vegan causes but can you "see yourself" in any of the other "people"?

Do you know if your Folate level was tested as this works together with iron and B12 to make red blood cells and a deficiency in one or other will interfere with that?

As I said, I'm not medically trained but I have had P.A. for 45 years and there are others on here who will be able to give you good advice and the next steps to take.

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Thanks so much for your reply.

Looking at this list I don't fit into any of these except iron deficiency anaemia as I mentioned.

I am 25 and I don't take any medication.

That's interesting about folate- not sure if it was tested. I assume if it was that it wasn't low as the GP didn't mention it.

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You are a bit of an enigma then kate894 but it seems to me that you may have an absorption problem in which case B12 sublinguals will not be of much benefit and which may also explain your previous iron anaemia.

You have ruled out any P.A. in direct family relationship, you don't have tummy troubles, not had gastric surgery, am not on any other medications etc etc so, do you have any of the following?

Symptoms of B12 deficiency tend to develop slowly and may not be recognised immediately. As the condition worsens, common symptoms include:

Weakness and fatigue

Light-headedness and dizziness

Palpitations and rapid heartbeat

Shortness of breath

A sore tongue that has a red, beefy appearance

Nausea or poor appetite

Weight loss

Diarrhoea

Yellowish tinge to the skin and eyes

If low levels of B12 remain for a long time, the condition also can lead to irreversible damage to nerve cells, which can cause the following symptoms:

Numbness and tingling in the hands and feet

Difficulty walking

Muscle weakness

Irritability

Memory loss

Dementia

Depression

Psychosis

It's my bedtime so I'll bid you goodnight for now.

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Hi clivealive

can you direct me to any documentation that says this. I would love to have it to show my GP as he doesn't believe hashimotos can cause malabsorption of b12. Thank you. :-)

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On page 23 in the book “Could it be B12? – an epidemic of misdiagnoses” by Sally M. Pacholok R.N., B.S.N. & Jeffrey J. Stuart, D.O. there is a list showing:-

Who’s at greatest risk for B12 Deficiency?

Anyone at any age, can become B12 deficient. Thus you need to be tested immediately if you develop the symptoms described in this chapter. However, certain people are at an elevated risk. They include the following:

Vegetarians, vegans and people eating macrobiotic diets.

People aged sixty and over

People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).

People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications that can interfere with B12 absorption.

People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.

People with a history of eating disorders (anorexia or bulimia).

People with a history of alcoholism.

People with a family history of pernicious anaemia.

People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).

People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients.

People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.

Women with a history of infertility or multiple miscarriages.

Infants born to and/or breast fed by women who are symptomatic or are at risk for B12 deficiency.

I hope this helps - Goodnight for now.

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Hi,

Are you in UK?

If yes, I'd recommend reading whole "BSH Cobalamin and Folate Guidelines", a UK b12 document that came out in 2014.

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

Flowchart in BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart makes it clear that in UK, patients who are symptomatic for B12 deficiency should have an IFA (intrinsic Factor Antibody) test and start initial B12 treatment.

IFA test can help to diagnose PA (Pernicious Anaemia) but test is not always reliable and it is still possible to have PA even if IFA result is negative (called Antibody Negative PA).

My experiences have led me to think it's very important to be well-informed about b12 deficiency, as I met some doctors and other health professionals who were not as well-informed as they could have been.

Are you symptomatic for B12 deficiency?

pernicious-anaemia-society.... see checklist

I ticked all my symptoms on PAS list and gave a copy to GPs.

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Other B12 info

Some may not be applicable in you're not in UK.

1) Pinned posts on this forum. I found Fbirder's summary of mainly UK B12 documents useful to read. Link to his summary in third pinned post.

2) PAS website

Some members of the forum join the PAS. They are helpful and sympathetic and a good source of info.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769 717

Martyn Hooper's blog about PA and B12 deficiency

martynhooper.com/

There may be stories on it that are relevant to you.

3) B12 deficiency Info website

Lots of b12 info and an interesting blog.

b12deficiency.info/

4) b12d.org website

b12d.org

5) BMJ B12 article

bmj.com/content/349/bmj.g5226

6) Book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. Martyn is the chair of PAS.

He has written two other books about PA and B12 deficiency. I also found "Living with Pernicious Anaemia and Vitamin B12 deficiency" useful because it had several case studies. I gave a copy of this book to GPs.

7) Book "Could it be b12" by Sally Pacholok and JJ. Stuart (USA authors).

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

8) BNF Chapter 9 Section1.2

UK B12 treatment info

evidence.nhs.uk/formulary/b...

UK B12 treatment info is also in BSH Cobalamin guidelines, about a quarter through document.

Who gets PA?

pernicious-anaemia-society....

Causes of B12 deficiency

b12deficiency.info/what-are...

What to do next?

b12deficiency.info/what-to-...

Unhappy with treatment (in UK)

Letters to GP about B12 deficiency

b12deficiency.info/b12-writ...

CAB

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and treatment.

hdapatientcaretrust.com/

Most important thing I learned...

was to always get copies of all my blood test results. i learnt to do this after being told everything was normal/okay and then finding abnormal results on the copies.

nhs.uk/NHSEngland/thenhs/re...

england.nhs.uk/contact-us/p...

Some people on forum get a set of their complete medical records, costs about £50 in UK. Can be very interesting to see what has been written in past.

I am not a medic just a person who has struggled to get a diagnosis.

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My B12 level was 176 when I was started on injections. I also had lots of symptoms of low B12, and I was also catching every virus/cold and infection.

As others have advised, the supplements will usually only work for those on a poor diet. If you have an absorption problem, causing you to be low in B12, then supplements won't be helpful.

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I suggest that you write to your doctor -

detail your diet as evidence that the deficiencies you have are unlikely to be related to diet but are indicative of absoption problems.

Also provide a list of your B12 deficiency symptoms

pernicious-anaemia-society....

Possible absorption problems would be PA, Coeliacs, Crohn's, h pylori infection - drug interactions seem unlikely from what you say about drugs.

Sleepybunny has provided you with links to guidelines which you could also refer to.

Oral tablets (presume 50mcg cyanocobalamin) will work if the problem isn't absorption but are not going to have an effect if you have an absorption problem.

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Wouldn't supplement at all. You will never get a true reading.

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kate894,

I do believe that the serum B12 blood test you had is "the pernicious anaemia test"...and 165 is really low. I have been on B12 injections for pernicious anaemia for 17 years and my doctor said I cannot stop until my serum is up to 800, if that tells you anything.

Maybe time for a second medical opinion on your situation?

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Hi UDEE,

I'm interested that your doctor seems to have suggested you can stop having B12 injections if your B12 serum reaches 800 or have I misunderstood?

In UK, treatment for PA is lifelong injections. See link underneath.

evidence.nhs.uk/formulary/b...

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SleepyBunny,

Yes, that is correct. The assumption is that if I can build up the B12 reservoir in my liver to the extent that it reflects over 800, then I never had true PA, only extremely low "simple" deficiency as I called it. It would mean that the mechanism which extracts B12 and transfers it to the liver is functioning at normal levels again; it was never totally closed down as in PA.

That's one doctor's story, and he's sticking to it...personally I take it all "with a grain of salt" because there are so many contradictory opinions nowadays...I just keep taking my shots and if the doctor ever tells me to stop I will see what happens; if I start needing to "sit down before I fall down" again, I will re-start the shots.

The protocol for treatment of irreversible PA in the U.S. is also life-time injections; BUT do I (or anyone) really have "true" PA or just a diagnosis based on statistical averages that turns out to be an exageration..?

Take the shots for safety's sake, but don't give up hope for a better future...

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Hi Kate894 and welcome.

The wonderful Gambit62, one of the main administrators here, and equally great Clivealive and Sunnybunny have provided a host of useful information above so I will just say that some of this will not apply if you are not in the UK.

That is why it is useful to us here to know which country you are based in. Otherwise things can get confusing and result in you being give information that is not relevant to where you live.

For example, UDEE above is also new but from the US where the type of B12 used for injections is usually cyanocobalamin whereas in the UK, and a lot of other countries hydroxocobalamin is the main type available and used for injections. These two types stay in the body for different periods and so the frequency of injections given is different in the US to those countries using hydroxocobalamin.

UDEE suggests that the serum B12 blood test is the test for Pernicious Anaemia (PA). My understanding is that the serum blood test for B12 merely measures the level of B12 in your blood - and is not a diagnostic tool to determine the causes of any deficiency, for example, PA.

There are a number of other blood tests that are used to attempt to diagnose the cause of any B12 absorption problems - eg as Gambit62 suggests above, the causes include PA, Coeliacs, Crohn's, h pylori infection etc.

There are separate blood tests for all of these possible causes. For example, Sleepybunny mentions the IFA test - intrinsic Factor Antibody test which can help to diagnose PA but it is still possible to have PA even if IFA result is negative (called Antibody Negative PA).

------------------------------------------------------------------------------------------------------------

By now your head must be spinning and even I am not sure whether we have answered your original questions, ie

- is oral supplementation effective or should I be offered injections?

- Would supplementing b12 affect the accuracy of a pernicious anaemia test (or are these unrelated)?

So, an attempted summary:

1. Oral supplementation is really only effective if the low B12 level is NOT caused by malabsorption problems in the digestive system - eg PA, Coeliacs etc.

2. Where absorption problems have been identified, injections are the best solution.

3. The serum B12 test does not itself identify the cause of any absorption problems, and separate tests for each of these specific conditions need to be carried out to identify any of these.

4. In addition to these specific tests, it is also usual/helpful to carry out a number of other related blood tests, eg:

- a Complete (or Full) Blood Count which covers a range of indicators of the state of your blood, red blood cells, white blood cells etc some of which are specific indicators for things like PA;

- iron/ferriton tests, Vit D levels, other vitamin and mineral level tests (folate (Vit 9) Potassium, Magnesium etc.)

[NOTE - these tests are actually usually done before the more specific tests for PA etc, but can also be done at the same time.]

5. You seem to have had some of these - eg iron, ferriton, Vit D - but it would be helpful to know exactly what tests and their results (plus the ranges used by the lab). [Many people post the tests and results here for comment.]

6. Your second question - YES supplementation of B12 in particular would seriously affect any further tests to determine whether your low levels are due to PA or other types of malabsorption.

Many people here know only too well that supplementation can skew tests and result in never getting a definitive diagnosis of PA etc thereby leaving them vulnerable to changes in treatment.

[Same goes for things like folate supplementation AND it is not a good idea to supplement with Folic acid before treatment of low B12 has begun. I will leave this for discussion another time perhaps.]

WHERE TO FROM HERE

Back to the good advice from Gambit62. And I would add into that you request a full (written) list and results of all tests done to date (including ranges). Sleepybunny also mentioned this.

I would also point out to the doctor that oral B12 supplementation at this point would adversely affect the accuracy of any further tests to identify whether the low B12 is due to absorption problems - mentioning the IFA test, Coeliacs, Crohns etc.

Do come back with any more questions, clarification needed etc. We are all here to help.

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Deuto,

Yes, I also have noticed that various medical protocols seem different in the UK than in the US. I wonder if it has to do with viewpoint differences between social medicine versus open market health insurance.

Then I think about how in China, the protocol would involve a heavy reliance on acupuncture. In some Arab countries, the medicine man seems to focus more on dietary considerations than anything else. And of course in Papua New Guinea, the witch doctor will tell you to drink LSD-laced tea.

Interesting about the cobalamin though. I think hydroxocobalamin is not even available in the U.S...

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Thank you so much for all your replies!

clivealive the only symptoms I have are pretty non specific- fatigue being by far the biggest one. I get lots of sleep and am permanently exhausted. The main reason I went to the GP was because I was having some difficulty breathing- I feel like I need to yawn a lot but can't get a satisfying deep breath (don't know if that makes sense!)

Sleepybunny- I am in the UK. Thank you for all the information I will have a read!

Deuto Thank you for your reply and for taking the time to answer my specific questions. I didn't get a print out of my blood test results but will ask for one next time.

I have decided not to take the prescribed oral supplements for the moment at least until I can see the GP again. I think it is really unlikely that the deficiency is diet related and it sounds like it would be best to have further tests first in order to get an accurate result.

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You are very welcome, Kate894. Your description of your difficulty breathing sounds like a clear case of what is called "the Sighs"!

See the symptoms list in Sleepybunny's fabulous catalogue of things to read - this one pernicious-anaemia-society....

Don't hesitate to come back with any further questions etc. Probably best to do so before you see the doctor again. Happy to help with a list of info for doctor and questions to ask etc.

From what you said about him, it would seem he knows very little about B12 deficiency but may be 'ripe' for educating ! He appears to be willing to treat but perhaps not in the right way due to lack of knowledge. So here's hoping.

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