Pernicious Anaemia Society

How to differentiate between PA and absorption issue

How to differentiate between PA and absorption issue

Hi.

I've posted on the thyroid forum as my this were that my symptoms/ issues are linked to that but after reading so many posts on here I think I should be also concerned about VitB12 levels. A year ago GP wanted to rule out MS given my symptoms but at the time I didn't realise how similar they were to low vit B12. To cut a long story short I've been supplementing with high dose VitD, folic acid, iron and VitB12 after blood tests showed folate was low. GP refused to do anything about the low VitB12. I've posted the original blood tests.

I've since had done private bloods and managed to raise my ferritin up to 55 and folate up to 12 but my VitB12 is staying at 280. I'm drinking goat kefir, eating nutritional yeast, etc etc but it doesn't seem to budge.

Any thoughts? Ideas? I looked into PA a few months ago but blood work didn't necessarily indicate it.

Thanks.

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oldestnewest

Re vitamins: I'd suggest reading SeasideSusie highly knowledgeable posts. I know you'd gain great insight from reading them. Good Luck, B xx

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Hi,

Are you in UK? I'm asking because patterns of B12 treatment vary from country to country. If you're not in UK, some info below may not apply.

"I looked into PA a few months ago but blood work didn't necessarily indicate it. "

What blood tests did you have to check for PA?

Did you have an IFA Intrinsic Factor Antibody test?

IFA test is not always reliable and it is still possible to have PA even if IFA result is negative or normal range (called Antibody Negative Pernicious Anaemia).

Antibody Negative PA is mentioned in following links. If you're in UK, I'd recommend reading whole BSH Cobalamin and Folate Guidelines and BMJ b12 article.

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, people who are symptomatic for b12 deficiency should have an IFA test and start initial b12 treatment. This applies whether B12 is low or within range.

It's possible that Antibody Negative PA may not be recognised in some countries.

BMJ B12 article (UK article)

Emphasises importance of treating people who are symptomatic even if B12 is within range.

bmj.com/content/349/bmj.g5226

BNF British National Formulary Chapter 9 Section 1.2

Details of UK recommended b12 treatment. UK treatment info is also in BSH Cobalamin Guidelines. In UK people who are symptomatic for B12 deficiency with neuro symptoms are supposed to get more intensive treatment.

If you're in UK, GP will probably have a copy of BNF on their desk.

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

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

Link about What to Do Next if B12 Deficiency is suspected (UK website)

b12deficiency.info/what-to-...

More links about blood tests

b12deficiency.info/b12-test...

patient.info/doctor/macrocy...

labtestsonline.org.uk/under...

patient.info/doctor/folate-...

Normal Range B12

"I think I should be also concerned about VitB12 levels"

It's possible to be highly symptomatic for B12 deficiency with an in range B12 result, I had many typical symptoms with most b12 results between 300 and 500ng/L.

Point 5 in next link is about being symptomatic for B12 deficiency with an in range B12 result.

b12deficiency.info/b12-writ...

Are you symptomatic for B12 Deficiency?

pernicious-anaemia-society.... See PAS Checklist PDF on right of page.

b12deficiency.info/signs-an...

Risk factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

PAS (Pernicious Anaemia Society)

pernicious-anaemia-society....

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

If you suspect PA, it may be worth joining PAS who can offer support and info. They are based in Wales, UK but have members from around the world.

PAS support groups

pernicious-anaemia-society....

B12 books I found useful

"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.

B12 blogs

Martyn Hooper's blog about PA and B12 issues

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

Neurological Consequences of B12 deficiency

Untreated or under treated B12 deficiency can lead to permanent neuro damage including spinal problems.

b12deficiency.info/b12-writ... Point 1 mentions neuro symptoms

PAS article on Neuro Symptoms of PA (mentions MS)

pernicious-anaemia-society....

PAS leaflet on SACD, sub acute combined degeneration of spinal cord (only available to PAS members)

pernicious-anaemia-society.... on second page of list

Blog post that mentions SACD

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

Lots more b12 info in pinned posts on this forum. Useful summary of mainly UK B12 documents in third pinned post.

I am not medically trained.

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Hi sleepybunny,

Thanks for such a wealth of information. I'll definitely get started on it and go back to my GP. I'm the UK and have had symptoms for about 2-3yrs. Some of the more physical such as pins and needles on my face, numb arms legs have gone since I started supplements but my memory, brain fog, aphasia etc still remain. My GP was very dismissive of B12 being implicated in any of them. I even had to tell him that taking folate without also supplementing iron and B12 could be dangerous.

I'll double check my blood tests but no, don't think I had the IFA test. I'll ask for that.

Thanks so much for providing all the info. I appreciate it more than I can say. Just want to finally feel 'normal' again.

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Hi again,

Pins and needles, numbness, memory issues, aphasia would normally be considered as neuro symptoms.

In UK, people who are symptomatic for B12 deficiency with neuro symptoms are supposed to have

A B12 loading jab every other day for as long as symptoms continue to get better (this could mean loading jabs for weeks even months) then it's a jab every 2 months.

There seem to be a lot of UK people on this forum with neuro symptoms who struggle to get the recommended treatment regime for B12 deficiency with neuro symptoms.

Sometimes what happens is that they are put on the standard pattern of treatment as follows....

6 B12 loading jabs over 2 weeks, followed by a jab every 3 months

Being on the standard regime may not be enough for someone with neuro symptoms and further deterioration might occur. Even some people on the correct level of treatment sometimes find it is not enough and take additional B12 supplements.

Quite a few find that starting b12 treatment is not a quick fix...it can take weeks even months to show improvement. I think it's important that GPs are aware of this, especially with patients who are B12 deficient with neuro symptoms as there is a chance that loading doses are stopped because no obvious improvement has happened when what a patient might need is a longer period of loading doses.

Do you also have tingling and tinnitus, migraine, balance problems plus other neuro symptoms?

Proprioception

One neuro symptom that can be associated with B12 deficiency is a problem with proprioception sense ( awareness of your body in space).

A neurologist could carry out tests to check for proprioception problems. Two tests that I am aware of, are walking heel to toe with eyes closed and the romberg test. It's vital that these tests are only carried out by a qualified doctor in a medical setting due to possible dangers with losing balance.

Have you seen a neurologist?

If you do, do your B12 homework first and be prepared for meeting a neurologist who is not as well-informed about b12 deficiency as they could be.

"I'll definitely get started on it and go back to my GP."

Might be worth writing a letter prior to next appt. as this would give GP time to digest info and removes any face to face confrontation...some GPs are not keen on assertive patients.

My understanding is that in UK, letters to GPs are filed with a patient's medical records so are a more permanent record of issues raised than a conversation. I always keep copies of any letters I write as well, as sometimes things go missing from medical records.

Appts in UK tend to be quite short although there is nothing to stop you asking for a double appt.

Access to medical records/test results (England)

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

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

nhs.uk/chq/Pages/2635.aspx?...

As you have been supplementing with B12 , it may make it more difficult to get GP to consider B12 deficiency as a possibility.

I'd suggest talking to PAS, contact details in above post.

"GP wanted to rule out MS given my symptoms"

There is a chapter in Sally Pacholok and JJ. Stuart's book "Could It be B12" that deals with MS type symptoms.

"I'll double check my blood tests but no, don't think I had the IFA test."

Flowchart link in my first post makes it clear that in UK, patients who are symptomatic for B12 deficiency should have an Intrinsic Factor Antibody test (IFA) and start initial B12 treatment. This applies whether B12 is low or within range.

If your brainfog is bad and you can't take all the info, I'd suggest at least reading the flowchart which outlines when PA and Antibody Negative PA can be diagnosed in UK and also the summary of B12 documents in third pinned post.

BMJ B12 article ( link in my first post) emphasises importance of treating patients who are symptomatic for B12 deficiency even if serum B12 is normal range, in order to prevent neurological damage.

Other conditions

Have you ever been tested for H pylori infection? This can lead to b12 deficiency due to causing gastritis.

Coeliac disease?

It can affect gut and therefore lead to absorption problems including with B12.

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

Two blood tests are recommended, tTG IgA and total IgA. A person who has IgA deficiency may need alternative tests for Coeliac disease, see link above.

NICE guidelines Coeliac disease

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

Unhappy with treatment (UK Info)

Link about letters to GP

b12deficiency.info/b12-writ...

CAB

citizensadvice.org.uk/health/

HDA patient care trust

hdapatientcaretrust.com/

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

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Thank you for posting that wealth of information! This is so incredibly helpful! I made a separate post just a little while ago wondering about PA because I too have symptoms seemingly consistent with B12 deficiency or some sort of anemia.

I see that Donought had a Ferritin level of 31 and increased that level to 55. So, Ferritin at 31 is considered too low? In my other post I mentioned that my Ferritin is 24 and I was told that it is normal.

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gg317 i found parts 2 and 3 on youtube.

I plan on emailing this along with my history to each of the doctors and therapists that i been to and know. I wont be blaming them. I will be asking them to share this info with the doctors they know and asking them to ask those doctors to also share this info.

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i ve been watching all these b12 flicks for a long time now, have a hard time with absorbing info. I figured if I post the part one anyone interested would see and watch the other parts if desired. I am still nowhere with a diagnosis and am not getting any better. My neuro wants me to get a brain scan, I still have the babinski reflex so he knows I am still have neuro issues. Hows the h py healing? Im still very nauseated and waiting to see my gastro.

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I am on day two of antibiotics, as i gave the ppi 2 full days to reduce acid prior to starting antibiotics. I also started bismuth with ppi. I have read research articles on ppi and bismuth reducing h pylori count on their own and that antibiotics work better/are more effective in low acid. My stomach hurt on ppi and bismuth only which is odd because i don't have stomach pain, just nausea, regularly.

Sarcasm alert

Im sitting here with both feet having pins and needles and a fever blister outbreak, which i am just loving.

I am so sick and tired of being sick and tired!!!

Thanks for asking. I feel better having ranted. 😀

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I'm glad you rant and feel better. I have learned a lot from it. Its been over a week since my dr said he was referring me to a gastro but when I called yesterday about it I was given the brush off "they will call you" last time I heard that, I never got a call but was later told that I need to do the calling..to add to my mental confusion,lil rant to you from me. lol, be well.

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part 1 of many, if interested.

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I still do not know how you can decipher between just being low and having PA...has anyone have the answers I may have missed. Some of us were denied the test initially and am not sure if it will be accurate after b12 therapy?

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PA is an auto-immune condition that stops the mechanism that allows you to absorb B12 from your working properly. There are a number of other conditions that can also affect B12 absorption - the result of all of these conditions is going to include the development of symptoms of B12 deficiency.

The symptoms associated with PA are the symptoms of the B12 deficiency it causes.

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Is it possible to have B12 malabsorption and folate malabsorption that is masked by taking methyl supplements of both, and serum levels of both are very high? Example, serum B12 >1500 and serum folate >22.3, and meanwhile the cellular level of both is too low?

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malabsorption = problems absorbing - it doesn't mean no absorption just impaired absorption, so using very high doses orally can result in enough B12 getting from your gut to your blood.

having high levels in your blood doesn't necessarily mean that gets through to your cells. In fact, in some people, high serum levels can cause a reaction that stops the B12 going from your blood into your cells, whichiswhere it is really needed.

However, if you are just taking methyl then there is also the possibility that you are one of the very rare people who can't convert methyl to adenosyl- the other form of B12 that is used in cells. I know there is a lot of hype about methyl being the more natural form and hence better but it's based on flawed logic - most notably the assumption that the amount of processing that goes on in absorbing and using B12 doesn't have any impact on the B12 molecule - it actually goes through several changes during the process that gets it into and makes it useable in your cells. Some people really find that methyl does nothing for them

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Are you feeling any better? I too once had concerns for ms. My tests were negative. That's great that you were able to raise your ferritin to 55. How long did that take? And also raised your folate. If you are not able to raise your B12, it's possible that you have some condition that is preventing the absorption of B12 and folate at a cellular level. I am wondering the same for myself, but I have very high levels of B12 and folate, and symptoms of some sort of deficiency. My ferritin is 24.

My doctor seems to think all my levels are normal and good, no matter where they fall in the range. I just saw a gastroenterologist this week. She is going too do a colonoscopy and upper endoscopy, take a bunch of biopsied, hopefully rule out autoimmune conditions (I already have one). Have you had any 'scopies and biopsies?

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Hi,

Some people can have functional B12 deficiency..there is plenty of B12 in the blood but it's not getting into the cells.

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

More info on functional b12 deficiency in this link.

b12deficiency.info/b12-writ...

B12 is absorbed in the terminal ileum. If there is damage to terminal ileum, B12 absorption may be affected.

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Hi Sleepybunny,

Thank you for your response. I'll read over that tomorrow. It's bed time here, and I'm feeling sleepy. ;-) If you get a moment, could you possibly look at my separate post where I'm asking 'can a person have PA if'? It has specifics and bloods. Thank you in advance! :)

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Hi, sorry been away for the weekend :) thanks for the responses. I had no idea some people couldn't convert methyl I am indeed taking that but was thinking of getting sublingual to try that. I don't know about my serum levels.

It has taken about 5 months to raise my folate and ferritin levels, which is why I was so surprised not to see a change in B12. I'm feeling better in that I have a bit more energy etc but my memory is still shocking, tinnitus, aphasia, brain fog are still awful. I'm also supplementing VitD.

Shooting stars, how come your B12 is so high, what are your supplementing with and do you find it's helped? I'm going to the Dr in a couple of weeks to ask for more tests and then ask for injections. I've not had any biopsies but they did query celiac but the blood test what negative but I'd been gluten free for a while before it.

I've been taking Kefir since July to sort out any digestive issues. Definitely noticed a difference so am even more surprised about the low B12.

Drs are rubbish with ranges, I've found. Unless it's outside their range they seem to think everything is fine! I plan to get some blood tests done if I ever feel 100% so I know what MY normals are ;)

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