Pernicious Anaemia Society
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B12 Malabsorption ?? Confused !

Hello anyone who can help ? !

Really confused. Saw functional medicine Dr in March regarding autoimmune/thyroid/graves. She said I probably wasn't absorbing B12 & suggested injections. I wanted confirmation I needed them so had private urine test - came back in high need . Can't afford privately - showed GP results - they wouldn't acknowledge so they did blood test. Got results today ...have even higher level of B12 than last test.

I have all symptoms of being deficient but also have terrible facial flushing & fluctuate in blood pressure & awful pressure in ears ( symptomatic of blood rushes ) - just been reading these are symptoms of too much B 12.

Don't know what to do now ....very ill.

Thanks to anyone who can help 😱

23 Replies
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Hi Pops777

I'm not medically trained but I wonder whether the urine test you had done privately was the uMMA test which measures the amount of MMA (Methylmalonic acid) in the urine

Elevated levels of MMA indicate B12 deficiency. MMA is 40 times more concentrated in the urine than the blood, and the urinary MMA (uMMA) is the preferred test over the serum MMA.

The "results today ...have even higher level of B12 than last test". was that a serum B12 test?

This is not a very reliable indicator of B12 at the cell level.

Was your Folate level tested?

The British Society for Haematology guidelines say on the Diagnosis of B12 and Folate Deficiency "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment".

google.co.uk/url?sa=t&rct=j...

Your doctor should be treating you not just looking at the computer screen.

Make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

If you do have "autoimmune/thyroid/graves" problems these will put you at risk of developing a B12 deficiency .

Hopefully someone more knowledgeable will be able to advise you.

I wish you well

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Hello & thankyou. I am feeling little overwhelmed at moment - been researching.. Info is there just no easy solution. I'm pretty sure my Folate level are ok - but will be checking. I have stopped all supplements with B12 in them ( even though need for other benefits ) in hope symptoms of Facial flushing, numbness,nausea, blood pressure ( DIA especially ) subside.

I'm trying to understand why B12 isn't flushing out of system if it's water soluble & Im not getting into cells ? Also if I have B12 infections won't I feel even worse as I have too much not being used now.

Just started diary ......hoping for ' Happy Ending '

Many thanks for info 🙂

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Please respond to fbirder's questions below as he is far more knowledgeable than I am

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Yes - thank you I will. 🙂

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So, a real doctor did tests and said your B12 was OK. But a non-doctor guessed that you need B12 injections.

What was the urine test? If it was MMA, have you had your liver function tested?

What were the exact numbers for your B12 levels?

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Hi Yes MMA. Liver ok but apparently I'm also in need of Pancreatic Encymes which I've read are beneficial in B12 absorption ? ( Need to check this ).

Was in such confusion after talking with ' real Dr ' forgot to get results printed. Very high though.

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...I do remember seeing it was out of range though.

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Also does anyone know if taking Methyl Folate would help get B12 into cells ? My current Folic acid is borderline ( urine test says

).

Thanks

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No. Folate has nothing to do with getting B12 into cells. But it does work with B12 in one particular reaction (the conversion of homocysteine to methionine).g

But I’ve never heard of a urine test for folate. Unless you mean a test for homocysteine. If that is raised it could be caused by low folate or low B12. To tell which you need to measure the amount of both in blood.

For most people folic acid is just as good as methylfolate, if not better (it has higher bioavailability).

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Gosh now I'm wondering. Just found test results from last June B12 505 ng/L - Serum Folate 7.8

I thought great B12 is healthy ! I know the level of B12 has now doubled but will have to get results from dr next week.

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....also looking at Urine results. Methionine is 4 (2-18 )

Just read that Methylmalonic acid ( mine is elevated. 2.1 ) - think that links to B12 in some way. Apparently injections would be most appropriate ?

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Coincidentally 69 years after gastric surgery to remove two thirds of my stomach I too have been diagnosed with an "under-performing pancreas" and prescribed Creon (25,000) capsules to take with every meal.

Having had P.A. for 46 years I doubt they "are beneficial in B12 absorption" in my case but am interested to know where you read that.

Let me know how you get on with the enzymes.

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So sorry have had lots of helpful response - haven't forgot you !

Beginning to wish I'd took Chemistry at school now !! 🤓

I will be reading more on pancreatic enzymes the w/end. So will keep you posted. I know EVERYTHING leads back to gut issues though.

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Your B12 was very high?

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It is quite common for thyroid problems to go hand in hand with B12 issues. Do you have your thyroid test results - if so then post them on the Thyroid UK forum here on HU for an understanding response.

Always obtain copies of all your results with ranges so you can post in a more informed way for people to advise more accurately.

I see you are new to the Forum - so WELCOME !

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Hi - Yes fully up with Thyroid - had Radioiodine 2 years ago. Autoimmune problems are the real problem. Been following Autoimmune diet & feeling great ( healing the gut ) but supplements & healthy Fish/meats seem to have put even more B12 in system.

Will look into posting some results

Thanks

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So are you now under-active after the RAI ?

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Yes - they tell you you'll be feeling ' Normal ' within 6/12 months. They don't tell you about further implications from Autoimmune diseases I am now Hypo but with Graves antibodies. Thought I'd won the War but it was just first battle ! 😕.

Really do fell if I can get some answers to B12 absorption - I will be well on way.....as 90% of my symptoms match deficiency. Can't even do weekly shop at moment as get dizzy/weak legs.

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Do you have any thyroid test results ? Also you will need results for Folate - Ferritin & VitD.

Being Hypo and having low B12 can overlap !

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I have extremely high B12 . Just not doing anything with it !

Can't post results at moment. Vit D is good though

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A good VitD result is around/over 100. If your GP said it was good I would be cautious as anything in range is considered OK ....

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If you've been supplementing with B vitamins, niacin - B3, is known to dilate blood vessels and cause flushing. B12 supplementation may also have distorted tests and can make it very difficult to be treated by GPs who have not researched, which is why many of us on the forum self inject.

This is a link to the latest BMJ research document summary (GP would probably able to access the full document behind the paywall):

bmj.com/content/349/bmj.g5226

It states that there is NO reliable test and, (bottom of page 4 ' under, 'How is Response to treatment assessed' ), once b12 treatment is started, blood levels are not reflective of how effective the treatment is - it is the clinical condition of the patient that matters.

"Cobalamin and holotranscobalamin levels are not helpful because they increase with vitamin B12 influx regardless of the effectiveness of treatment, and retesting is not usually required."

As Marz has said, Hashimoto's and B12 deficiency often coexist and can affect absorbtion of all nutrients, but B12 particularly is the most difficult and complex.

The BMJ document also contains information regarding frequency of injections for neurological symptoms :'every other day until no further improvement (British National Formulary) - particularly important as, the more severe the symptoms, the longer it takes to recover, particularly if they're neurological.

You cannot overdose on B12 but have to be careful with over supplementing some other B vitamins, iron, etc.

b12deficiency.info/what-to-...

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Hi. Thankyou for response. I have more reading to do ! Ian supposed to supplement with Vit D3 ...but hadn't yet started. I know I have leaky gut but am on way to fixing that ...not sure if this is preventing absorption. Do have nerve damage I think - have to do simple chores in stages ( trying not to worry though ). Graves & hypo not quite as common ....tends to be more info with hashimotos.

Very helpful info - much appreciated 🙂

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