B12 advice please

[BluebellPettle]

B12 results are back and they are 275. I haven’t got a print out still but I think ferritin was 8.6 ( trying to remember on what she told me).

Different doc this time. Still saying this is normal.

I said it’s dropped as my b12 was 296 in April - she said it fluctuates.

Feeling like a hypochondriac!! :/

Any advice please?

[BluebellPettle]

Symptoms

Headaches

Nausea

At times sickness

Hair loss

Extreme tiredness

Severe mood swings

Change in periods - now irregular

Confusion / disorientation

Weakness of legs, arms

Balance/ coordination problems

Dizziness

Restless legs- very occassionly

Already wear glasses- high prescription- gets worse very year despite me being 32

Forgetfulness, memory loss

intellectual deterioration

Impaired fine motor coordination- hand grip- gotten worse for years- cannot grip certain things ie cutlery.

Heightened smell

Memory loss- always been poor

Delusion

Depression

Mania - at times.

Anxiety

Paranoia

Irritability- severe and frequent.

Apathy- yes- worryingly.

Personality changes

Sleep disturbances-

Insomnia

Generalised weakness, fatigue

Breathlessness

Chronic fatigue

palpitations- (not sure of this Down to anxiety ?)

Infertility- investigating

IBS - Irritable bowel syndrome

Constipation- occasionally, but very regular diahorrea(every morning at least)

Fainting/light head

I’ve taken the list and deletes what doesn’t apply- on the top are the main ones that Are not on the list.

Thanks 😊

[Sleepybunny]

Hi,

Are you in UK? I'm asking because pattern of B12 treatment can vary from country to country. Some info below may not apply if you're not in UK.

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Risk Factors for PA and B12 deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

B12 books I found helpful

"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.

UK B12 articles/documents

BMJ B12 article

bmj.com/content/349/bmj.g5226

BMJ article emphasises the need to treat people who are symptomatic for B12 deficiency, in order to prevent neurological damage, even if there is no clear deficiency in blood results.

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 Intrinsic Factor Antibody (IFA) test and start initial B12 treatment. This applies whether B12 is low or within normal range.

IFA test can help to diagnose PA but test is not always reliable and it is still possible to have PA even if IFA test result is negative/normal range.

BNF Chapter 9 Section 1.2

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

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

B12 blood tests

b12deficiency.info/b12-test...

b12deficiency.info/what-to-...

patient.info/doctor/macrocy...

labtestsonline.org.uk/under...

patient.info/doctor/folate-...

Link about writing letters to GPs about B12 deficiency (UK info).

b12deficiency.info/b12-writ...

Point 5 is about being symptomatic for B12 deficiency with a normal range result.

Point 1 is about under treatment of B12 deficiency with neuro symptoms.

PAS (Pernicious Anaemia Society)

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

pernicious-anaemia-society....

PAS tel no [phone] answerphone

"Feeling like a hypochondriac!! :"

Sadly people with B12 deficiency sometimes get labelled as hypochondriacs. See links below.

stichtingb12tekort.nl/weten...

B12 blogs

There may be relevant stories on Martyn Hooper's blog about PA.

martynhooper.com/

There is also an interesting blog on "B12 Deficiency Info" website.

b12deficiency.info/

I am not medically trained.

[BluebellPettle in reply to Sleepybunny]

Sleepybunny

wow thank you for all the info- Yes I am in the UK and have recently moved form England to Wales where the normal range has changed again.

I am making my way through the reading.

First link..

Reading this makes so much sense- a lot of the symtoms I have just put down to life or my personality or the fact that I am just one of those people who need more sleep!

I related to these

Extreme Fatigue- yes

Brain Fogs- yes

Clumsiness/Lack of coordination I am ALWAYS Bumping into things or dropping things

Brittle, flaky nails & Dry Skin- not at all however- but I do have oily skin.

I have vertigo.

I get random pains- in my arm for example.

Most of these i put in my previous post- except loss of libido- not sure how I forgot this one. But it is a big concern.

I do not have co-exsiting conditions.

second link- this is my score

You have 8 body systems affected (and a blood serum B12 of 0ng/ml).

It's therefore 100.00% likely that you have B12 deficiency and should start taking supplements.

currently working throught the advice pages. I am guessing it is going to be up to me to pester the Doctor if I want to be treated...

thank you once again

[Sleepybunny in reply to BluebellPettle]

"have recently moved form England to Wales "

Are you aware that PAS (Pernicious Anaemia Society) is based in Bridgend, Wales?

PAS members can access details of PAS support groups. There are two in Wales. Not every PAS member has a confirmed diagnosis of PA, partly due to difficulty in getting diagnosis. PAS support groups can be a valuable source of info on helpful GPs etc.

pernicious-anaemia-society....

Supplementing before diagnosis

Taking B12 supplements before getting a diagnosis can make it very difficult to get a diagnosis of B12 deficiency. See next link.

b12deficiency.info/b12-test...

Most important things I learnt was to always get copies of all blood test results. In relation to B12, I look at b12, folate, ferritin and full blood count (FBC)

Good luck with getting answers.

[BluebellPettle]

Ok so.. how do you figure out if you’re deficient? Go by symptoms alone?

[Gambit62 Administrator]

The drop in levels is, as Eaoz says, insignificant as the variation is within the noise level from thetest. That makes it extremely unlikely that you have a problem absorbing B12 (though that conclusion could be false if you have been using very high dose supplements (order of 1000mcg or more).

That doesn't necessarily rule out deficiency as you could have a problem metabolising B12 (though this is very rare)- so your cells may still not have enough to do everything that they need to do - tests for that would be MMA and homocysteine - two harmful waste products that build up if you don't have enough B12 to recycle them, but they can also be raised by other factors - notably lack of B9 (folate) in the case of homocysteine and kidney function in the case of MMA, so they need to be done in context.

However, it is also true that the symtpoms of B12 overlap significantly with a large number of other conditions - including thryorid, iron deficiency, vitamin D deficiency, folate deficiency, diabetes ... so unless you have ruled every other possibility out, at this point in time there are other things that you could usefully be looking at to explain your symptoms because they are a lot more likely.

[BluebellPettle in reply to Gambit62]

Thanks for your input Gambit62 . Certainly food for thought. I haven't been taking supplements yet, I am cautious to as if there is an issue I'd like it addressed .

When I first posted I was directed towards the thyriod forum and advised to get blood results. However it is only when I have researched into B12 def that things are slotting into place. I am very wary, however of self diagnosing!! I am not medically trained and am simply going by the links posted on here (not just googling!) The main ones are the unexplained pain, I have always had this in my arms and legs, issues with clumsiness- I am constantly bumping into things dropping things. I have for a long time had achey pain in my finger joints and I can't open certain things like toothpaste or hold certain types of cutlery. I told a Doctor about this years ago as it was affecting my job and she looked into athritis but nothing was resolved.

I am wondering of all these ongoing symtoms now fit into place with low B12.