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b12 symptoms

Fluffyone profile image
9 Replies

Hi,

Need advice on what else I should have included in my blood test. Haematologist is already going to test active B12, MMA and homocysteine after stopping B12 injections for 4 months to try to get to the bottom of why I’m having symptoms.

History of Hashimotos 2019, vitamin d 2020 plus co factors. Low folate historically 3 month treatment, Have taken b complex tablet on advice from thyroid uk since 2020 so on all blood tests since B12 always been high.

Gp agreed to start b12 injections even though blood test showed no anaemia and high serum B12 as 2021 started with pins and needles and left sided headaches which then increased over time to list below but referred me to haematologist because felt uncomfortable to give more loading doses due to lack of evidence. Symptoms went down to original pins and needles, headache and hand tremor all to a lesser degree.

Haematologist plan do blood test when on b12 injections, stop injections to see if symptoms return and try to find root cause. 4 months will be December 15th.

Pins and needles hands and feet N

Numbness feet. Fingertips N

Skin crawling sensation N

Headache

Fatigue

Nerve tingling in face N

Mouth ulcers sore tongue

Brain fog. N

Word/ name finding difficulty. N

Hand tremor. N

Internal tremor/jitters

Dizziness. N

Dry/watery eyes. N

Breathless, feel not enough breath

Diverticulitis/disease

Joint pain

Heartburn

As you can imagine these symptoms have returned from approximately 2 months in. Any advice would be most welcome, thank youx

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Fluffyone
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9 Replies
Fluffyone profile image
Fluffyone

tested for coeliac and pas both negative. I am gluten free

Nackapan profile image
Nackapan

Iron Anaemia does not need to be present to be B12 deficient. Doctors are not well read if still rely on this . A late stage shows changes in blood cell size.

My daughter had megobolastic blood cells.

You seemed to get a good clinical response to B12 injections.

As youve had more symptoms return since b12 injections have been stopped surley that's enough evidence they benefit you.

Keep a symptom diary

Sounds like you G.p is trying to help you as not everyone gets the 'extra' testing.

I'm not familiar with thyroid symptoms but many overlap

B12 deficiency alone have given me all the symptoms you list and more .

The sore mouth and ulcers only transient and minor for me and I think linked to folate deficiency as well.

My daughter had chronic mouth problems .

She still needs daily folic acid after a short term high dose otherwise specific symptoms mouth symptoms return.

The crawling flesh and tremors i put down to low ferritin.

Bowel issues for me were evident before but put down to the menopause and hormonal changes.

My b12 def. trigger.

Resolved on regular b12 !!

I've left with a vestibular disturbance.

The autonomic system can also be affected.

One of the things my daughter now has to live with is POTS .

Did you ever get an

Intrinsic factor antibody test?

If positive = Pernicious anaemia

If negative does not rule it out .

Some have had several test soften private before one positive one .

Hope you get a good treatment plan after further testing.

Lots of links to read through on sleepybunnys posts and on The PAS website .

Tracy witty

And books .

I still haven't got a reason .

Have nothing else to date going on to cloud the waters .

Ruling things out is often the way.

Only way I got treatment was an original very low serum B12 .

Bloods are limited at times as when very ill my bloods ' normal' otherwise .

I was referred to neurologists but All have different theories .

Due to symptoms had 2 brain MRIs .

Difficult to accept no reason found but assumed PA or absorbtion problem.

Needing lifelong b12 Injections.

Thankful regular B12 ,iron and vitamin supplements as a maintenence has given gradual but real improvements over 5 years.

'Proof of the pudding '

On no other meds. Apart from otc pain relief for varying degrees of head pain and aching joints.

Do keep copies of blood test results.

Do keep a diary.

Do carry on getting every test offered

I used to keep pain killer charts .

Symptom charts .

Memory task charts

No real patterns emerged .

No rhyme or reason at times .

Medics not interested in my notes . At one stage told not to bring them.

Tried to medicate me for ? Mental health problems many times .

I pointed out every time the fact it simply demonstrated how mentally strong i am dealing with alot of this alone !

Especially when on many occasions not believed .

I was reliving my daughters struggles in not being believed but this time as the patient not carer.

She also surprisingly at times did not get mentally ill.

Family history and diet never asked for but given.

Notes :

Useful to see how far I've come on days of frustration or poorly periods .

Ax you can see a minefield .

Common elements but also very I dividuual presentations.

Probably due to genetic traits and what we are personally predisposed to when our body under 'attack'

Do let us know how you get on.

Fluffyone profile image
Fluffyone in reply toNackapan

hey!

Thank you, yes referred initially for mri 2 years ago and tested for MS. All ok.

My thyroid levels are all good , mine is an autoimmune condition, first thing I looked at. I felt well for a time but then started getting all these symptoms so went to endocrinologist and optimised my thyroid meds.

I do keep a symptom diary

Had tests for intrinsic factor- negative

Both haematologist and new neurologist sceptical of B12, one saying I shouldn’t have symptoms still if I was having injections and the other said high b12, no anaemia and no disturbed reflexes! But agreed that if injections helped then ok with having.

A whole host of bloods were done when I first saw them in June, 10 vials! This was having B12 injections once a week at this point. I wanted to carry on EOD until my symptoms stopped improving but GP was uncomfortable as some GPs in practice were against it.

So… what should I ask to be included on these follow up bloods after 4 months free of B12? Just want to make sure everything is covered as I feel so awful again.

Thank you

Nackapan profile image
Nackapan in reply toFluffyone

Sounds lije you've had lots of blood tests already. As I said bloods don't always give you answers.

A repeat IFAB test.?Iron

Vit D

Ferritin

Iron

Folate ( b12 will be done at same time)

Any test they offer

If specialists agreed to continue b12 injections if helping ,find the G.p that will follow their advice and prescribe.

Two neurologists sanctioned my b12 regime.

Had to go through 6 Gps

One prescribed in the end with plenty of opposition from colleagues.

She had her back covered as neurologists letter on my notes .

Still referred to ...

As per neurologists instructions as prescription has been challenged many times.

Presently a 2 weekly prescription.

I was on every other day for 5 months with an unwanted break of 5 weeks whilst doctors opposing one another.

Nothing else was found to treat .

I was told by one neurologist .

No quick fix.

It coukd take months years.

He was right .

Another said I was poisoning myself!!!??

Overdosing .

This didn't however get included in his letter to G.p.??

I also have my own supplies since covid hit as scared wouldn't get it .

Like it on my medical notes.

Like keeping up awareness of B12 and individuals needing different regimes.

As if we all are driven to self medicate through lack of care the problem goes underground / unrecognised and unrecorded .

Also highlighting that the majority needing b12 Injections will always need them.

Sleepybunny profile image
Sleepybunny

Hi,

A few links that might be worth reading. I post a lot of info so might be best to take a week to read through it.

Link about "What to do next" if B12 deficiency suspected

b12deficiency.info/what-to-...

Symptoms of B12 Deficiency (folate deficiency also mentioned)

pernicious-anaemia-society....

b12deficiency.info/signs-an...

cks.nice.org.uk/topics/anae...

b12-institute.nl/en/symptom... (B12 Institute Netherlands)

Symptoms of Peripheral Neuropathy (damage to peripheral nerves)

nhs.uk/conditions/periphera...

Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.

Functional B12 deficiency

This is where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells.

MMA, Homocysteine and Active B12 (holotranscobalamin) may help to diagnose Functional B12 deficiency.

Blog post about being symptomatic for B12 deficiency with a normal range serum b12.

b12info.com/your-serum-b12-...

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS membership is separate to membership of this forum.

"tested for coeliac and pas both negative. "

Testing for PA

pernicious-anaemia-society....

A negative result in IFA (Intrinsic Factor Antibody) test does not rule out PA.

Thread about tests for PA and B12 deficiency

healthunlocked.com/pasoc/po...

Coeliac disease

A person with coeliac disease can get a negative result in tTG IgA test (usual test for coeliac) if

1) they have IgA deficiency

Did you have a Total IgA test?

2) they were not eating enough gluten prior to blood being tested

Did your GP ask you to eat plenty of gluten in more than one meal per day for several weeks before testing?

See if GP followed recommended guidelines below.

nice.org.uk/guidance/ng20

More about diagnosis of coeliac disease on Coeliac UK website

coeliac.org.uk/information-...

UK B12 documents

NHS article about B12 deficiency

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

BSH Cobalamin and Folate Guidelines

This is aimed at health professionals.

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

Summary of BSH Cobalamin and Folate Guidelines

pernicious-anaemia-society....

Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.

stichtingb12tekort.nl/engli...

BNF Hydroxocobalamin

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

NICE CKS (Clinical Knowledge Summary) B12 deficiency and Folate deficiency

cks.nice.org.uk/topics/anae...

NICE are developing new B12 deficiency guidelines to be published in 2024.

nice.org.uk/guidance/indeve...

Local B12 deficiency guidelines

I urge UK forum members to track down local B12 deficiency guidelines used by their ICB (Integrated Care Board) or Health Board and compare them with NICE CKS link.

If you can't find them online or by searching forum threads here then best bet is to submit a FOI (Freedom of Information) request to ICB/Health Board asking which b12 deficiency guidelines they are using and ask for a link to them or copy of them.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 is about being under treated for B12 deficiency with neuro symptoms present.

Point 5 is about being symptomatic for b12 deficiency with normal range serum B12.

There are research articles online about people suffering spinal cord damage from B12 deficiency despite serum B12 being within normal range.

PAS article about SACD, sub acute combined degeneration of the spinal cord

pernicious-anaemia-society....

Thread about Patient Safety, has useful links for those in UK having difficult health experiences with B12 deficiency.

healthunlocked.com/pasoc/po...

Wrong ideas about B12 deficiency

Misconceptions about a B12 deficiency

(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)

stichtingb12tekort.nl/engli...

Diagnosis and Treatment Pitfalls

(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)

b12-institute.nl/en/diagnos...

Two useful B12 books

"What You Need to Know About Pernicious Anaemia and 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 (US authors)

Very comprehensive with lots of case studies.

Help for your GP

1) PAS website has a page for health professionals.

pernicious-anaemia-society....

2) Club B12 is a group of researchers and doctors who are looking into B12.

club-12.org/

They have regular zoom meetings.

3) Good articles to pass to GP.

B12 article from Mayo Clinic in US.

The Many Faces of Cobalamin (Vitamin B12) Deficiency

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

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

Also recent BMJ article on Vitamin B12

Vitamin B12

BMJ 2023; 383 doi: doi.org/10.1136/bmj-2022-07... (Published 20 November 2023)

Cite this as: BMJ 2023;383:e071725

bmj.com/content/383/bmj-202...

I'm not medically trained just someone who suffered for years.

am111 profile image
am111

Serum B12 will be high on supplementation. How much and what type of B12 is there in the B-complex that you are taking?

Often, the only sign of B12 deficiency is neurological problems and not anaemia and your problems are definitely B12 deficiency related. Generally, this should be caught in the MMA test, so do let us know the result of the MMA test.

Since you are feeling better with B12 injections, you should take them. 2 month frequency with hydroxocobalamin injections is pretty standard and 3 months is really a stretch for many, so I think you should continue with 2 monthly injections or even monthly injections if it keeps your symptoms at bay.

Good luck!

Fluffyone profile image
Fluffyone in reply toam111

900mcg B12 igennus super b complex

Got symptoms even though I was taking these

Ingredients
am111 profile image
am111 in reply toFluffyone

Orals don't work well for all, especially methycobalamin. It does not work well for me and there are even studies that show it. Oral Cyanocobalamin seems to be better.

Best is to just take the B12 shots and forget about this B-complex. Deficiency of other B-vitamins is rare, except perhaps folate which you can get tested for or take it separately.

WiscGuy profile image
WiscGuy

Your doctor seems better informed than many doctors are on issues pertaining to B12 deficiency, including inverse relationship with MMA and homocysteine. It's important to note that some biomarkers can confirm diagnostic hypotheses regarding B12 deficiency, but none are able to disconfirm hypothesis of B12 deficiency. So, in your case, lower levels of these biomarkers on retest during periods of treatment with B12 will tend to confirm B12 deficiency. Higher levels after cessation of B12 injections will tend to confirm B12 deficiency. But the opposite results will not disconfirm B12 deficiency.

A recently-posted link to a very good medical-journal article helped me by summarizing what is currently known about diagnosis and treatment of B12 deficiency.

Vitamin B12, Wolffenbuttel et al.

researchgate.net/publicatio...

The following might be pertinent to you:

[Start quote]

Box 2: Factors influencing the accuracy of results of serum B12 and

related biomarkers

• Considerable variability exists between the different commercially

available serum B12 assays.31

• Day-to-day variation of serum B12 may occur; for example, a

concentration of 150 pmol/L on one day may be 120 pmol/L another

day.

• A serum B12 concentration within the normal limit, ie, above 148

pmol/L, does not exclude deficiency.

• Serum B12 concentrations may be influenced by specific genetic

polymorphisms or mutations; currently, more than 15 single nucleotide

polymorphisms are known to influence serum B12.

32 -35

• Oral B12 supplementation may result in serum B12 concentrations

within or sometimes above the “normal” range without reducing

symptoms, which can obscure the correct diagnosis.

• Holo-transcobalamin (holoTC), the biologically active form of vitamin

B12 in blood, also has a wide window with indeterminate levels,36

and the reference values strongly depend on the assay method.37

• Measuring serum concentrations of MMA and homocysteine may be

helpful in establishing B12 deficiency, especially in people with

borderline serum B12 levels, ie, those between 148 and 300

pmol/L.36 38 39 However, MMA was normal in 52% of individuals with

holoTC concentrations below 20 pmol/L, the latter being indicative

of deficiency.40 Additionally, specific genetic polymorphisms41 and

recent treatment with antibiotics may result in false normal MMA

levels,42 and MMA is also elevated with impaired renal function.43

• Serum homocysteine is less specific for B12 deficiency, and can also

be elevated in folate deficiency, vitamin B6 deficiency, vitamin B2

deficiency, and impaired renal function, hypothyroidism, and by

certain medications.44

[End quote]

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