High b12

[Phyloreardon]

Hi, my husband has been diagnosed with high b12 but is feeling tired all the time, breathless and lethargic. Wonder if anyone has any advice. Thanks

[Oneash]

How are his iron and foliate levels? Have they checked his heart? Feed him some liver!Others are more expert on functional and non functional B12, but it is a thing.

What are the Doctors saying?

[Phyloreardon in reply to Oneash]

They don't seem to be bothered. The one who flagged it up was a consultant physiotherapist. He has an appointment with doctors in a couple of weeks so thanks for any info to take with us

[Nackapan in reply to Phyloreardon]

I would go in person to your surgery and get an urgent /on same day appointment. I realise telephoning is fruitless.

I tried all day .

Nearest I got was number 24.

With messages to go online .

This is impossible for my mum at 94 with no mobile or computer

I went in person .

Get a copy of the recent blood results on paper while yoh are there or on an app you have it.

Then ypu will see comments and the level of b12

Unfortunately in the current system ypu have to be an advocate for someone too ill to push through to be seen .

The sooner a referral is made thd better.

Or call 111 if breathless.

If something was flagged in November he needs to be seen ASAP.

Worrying/ stress just makes everything worse.

I hope he gets seen soon.

As the bloods were ordered for a reason and shoukd be interpreted and acted on.

[Sleepybunny]

Hi,

Welcome to the forum.

I'm not a health professional.

High serum b12 without taking B12 supplements or having B12 injections can sometimes be a sign of a serious health condition.

Levels would be expected to be high if he's having B12 injections or taking high dose oral B12.

If he is not taking B12 supplements or having B12 injections, I would expect his GP to test his liver and kidney function and to do a Full Blood Count (FBC) and maybe other blood tests and possibly refer him to a specialist.

It is possible to have severe B12 deficiency symptoms with normal or above range serum B12 results.

Are his symptoms suggestive of B12 deficiency?

Functional B12 deficiency is where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells so person develops deficiency symptoms.

MMA, homocysteine and Active B12 tests can help to diagnose functional B12 deficiency.

B12info.com

b12info.com/

Pernicious Anaemia Society

pernicious-anaemia-society....

B12 Institute - Netherlands has a good list of possible symptoms.

b12-institute.nl/en/home-2/

Search online for this UK document "NICE CKS Anaemia - B12 and Folate deficiency".

More B12 info in pinned post "Various B12D/PA resources".

Two useful B12 books

Published a few years ago so may need some bits updating.

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

Martyn Hooper is the former chair of PAS (Pernicious Anaemia Society).

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

Very comprehensive with lots of case studies.

[Gambit62 Administrator]

How high was his B12? And has there been any follow up to establish why his levels are high (assuming they are above the upper limit of the normal range).

[Phyloreardon in reply to Gambit62]

No, nothing has been done. He had an appointment last week which has been put off till Feb 8th. I will go with him and just want to get my questions ready. He doesn't hear well and doesn't always ask the right things

[Gambit62 Administrator in reply to Phyloreardon]

He may have functional B12 deficiency. Lots of B12 in blood but for some reason it isn't getting through to cells where it is needed. There are a few conditions that can raise B12 levels - mostly kidney and liver issues - that should be investigated.

I am assuming that he hasn't supplemented, or doesn't use lots of energy drinks that have high amounts of B12 in them.

[Phyloreardon in reply to Gambit62]

The last blood test showed up problems with his kidneys, it said possible referral but that was November and nothing has been done. Good to know they are related. Gives me something to work with when we eventually get to see doctor. Thanks

[Gambit62 Administrator]

functional B12 deficiency would be diagnosed by looking for raised homocysteine and MMA but MMA result would be affected by kidney problems so might not be conclusive. Raised MMA with normal ratio to creatinine would indicate a B12 issue but if he has kidney problems that would affect the ratio. Tests aren't normally available through GP and would require a hospital referral. Treatment for functional B12 would be raising B12 levels further as the mechanism seems to be to do with the efficiency with which B12 is transferred to cells. However, I doubt a GP would want to do this without advice from a specialist.

[Cherylclaire Forum Support]

Functional B12 deficiency: raised MMA will give either a secondary confirmation of a B12 deficiency where B12 is normal but symptoms indicate a deficiency, or in the case of a raised B12 level, can confirm functional B12 deficiency - where renal problems have been ruled out by a blood test, and small intestine bacterial overgrowth (SIBO) has been ruled out by a fasting series of breath tests over 3-4 hrs.

Functional B12 deficiency is a dysfunction - where, for instance, injected B12 is not having the desired effect on symptoms because the link between the B12 and MMA (as a transporter) is not being made properly. Both can be high/ increase in the bloodstream but are not able to reach cells or tissues. There are, I believe, other as yet unrecognised forms of B12 malfunction - simply because the transport of B12 from start to finish is a complex process, so I doubt that only one "blip" in the chain is likely.

Another problem I have had is saliva duct strictures: which can restrict haptocorrin's ability to protect B12 from food (extrinsic factor) from stomach's acidity. This is a first-base irregularity - the strictures preventing the movement of haptocorrin produced in saliva glands.

All of the tests and eliminations I have had were via the NHS. My first MMA test was initiated from primary care - I now know this to be rare and difficult. My GP suspected functional B12 deficiency when my B12 injections for B12 deficiency were not able to control my symptoms. She also knew to eliminate renal problems as cause prior to MMA test. Later, when secondary care became inevitable, Haematology gave me 4 more MMA tests (all raised) and organised a SIBO breath test.

I did have one homocysteine test - by Haematology - but this returned a normal result. MMA remained raised however, despite very frequent B12 injections, for three years. The 6th and final MMA test done by DNA consultants.

Renal problems identified in November should be followed up as soon as possible. All the above only relevant if it proves not to be renal issues.

Wishing you better and faster help with this.

[B12life]

has he had any b12 injections?

If not, sleepy bunny is dead on. I would get with a doctor who is going to take this seriously.

Liver and kidney function as well as the other tests mentioned here should be done.

[Phyloreardon in reply to B12life]

We have an appointment next Thursday, first one was cancelled a couple of weeks ago. Hope this one OK. Thanks