Low B-12

[Janeylou69]

Hi I have low B-12 , I’ve lost 3lbs since Monday without trying and I have megoblastic anemia is the weight loss normal I’m very worried.

[spacey1]

I lost weight before I was diagnosed - but I think that was because I couldn't sleep and couldn't sit still! You should get your GP to check out that there's nothing else going on too, of course, but you might find that you stabilise as the B12 gets into your system properly.

[Janeylou69 in reply to spacey1]

Thanks very much for your input , my appetite is up and down but I’m still very worried,I’m having my B-12 injections in 2 weeks time ,it’s just very depressing and I have children to think about but I just can’t stop thinking about it all xxx

[addie18 in reply to Janeylou69]

Two weeks sounds like a really long delay if you have already been diagnosed with megaloblastic anemia and/or low b12. Are they having you superdose orally until your first injection?

[Janeylou69 in reply to addie18]

Hello addie18 they haven’t given me any doses orally and I’m feeling it bad so I really can’t wait for that first injection and I have to have 6 over two weeks x

[addie18 in reply to Janeylou69]

I would call your doctor and make sure they know how bad you feel and ask them if you can get a one-time injection sooner, possibly somewhere else if they don't yet have any b12 injections on hand. It doesn't sound normal to me to have someone with anemia to wait 2 weeks for treatment. Also, consider taking over the counter b12 supplements as a temporary stopgap before your injections. If you haven't yet had a test for Intrinsic Factor Antibodies, then taking injections could cause the results of any future test to be less reliable, so that is something to consider. On the other hand, in extreme cases, not taking the injections can cause serious spinal damage ("Subacute combined spinal degeneration"). I don't mean to alarm, usually doctors don't make serious mistakes, but its at least a remote possibility, I definitely don't think it would be rude under the circumstances to call them and insist that someone qualified double checks.

[Janeylou69 in reply to addie18]

Thanks Addie for your input ,I hate feeling like this and can’t stand the waiting ,I feel so tired ,so depressed ,I feel like I want to cry all the time ,my family tell me not to worry but it’s all I can do ,the weight loss is the most of a worry ,I told my doctor last week that I’d lost weight and was feeling nauseous and she said that was because my body is not absorbing it or something ,I just don’t know what to think anymore ,I just want to get back to normal and feel better for my kids and I’m not at all x

[Janeylou69 in reply to addie18]

Hi Addie also could it of been the other way round could I of lost weight ,and not noticed straight away and that’s the reason for the low B-12 coz I’m worried sick x

[JanD236]

I was at my lightest weight before diagnosis but it was because I had no appetite due to extreme bloating and constipation. Once treated with B12 and taking other steps to improve my digestion my weight returned to normal.

If you are eating normally but losing weight then you should see your doctor. If you can’t eat normally for any length of time then that needs looking at too.

[Janeylou69]

I think it’s a bit of both ,coz I do eat but not great appetite ,each day is different but I’m still very worried,it’s all I think about xxx

[Gambit62 Administrator]

are you drinking enough? - when you loose weight that fast it's usually loosing water?

weight will also vary as you go through the day so it's important to compare weight at roughly the same time of day ... and also whilst wearing the same amount of clothing (though I'm sure that you are aware of that). Is the injection in 2 weeks a maintenance dose? sounds as if you may need maintenance doses more frequently.

[Janeylou69 in reply to Gambit62]

Hello gambit62 I don’t drink an awful lot ,I’ve tried all that with my weight , in 2 weeks time I have to have 6 injections over two weeks so there has been no maintenance doses x

[TarenaElizabethD]

Hi have u asked for iron and folate to be tested ? And magnesium levels , sometimes esp in my case I've ended up def in 3 and it wasn't picked up straight away , might be worth an ask .as u need them all in balance to work .

B12 inject made me feel worse in the loading doses but now it's in my system and I'm taking iron and folic acid and a probiotic , I'm feeling much better .

I have persuaded my doc to allow me 3 weekly inject for the next 6 months to see if I improve and I've to get bloods checked 3 monthly .

Feeling better already

Good luck X

[Janeylou69 in reply to TarenaElizabethD]

Hi my iron has been tested ,I don’t know if they tested my magnesium , I’m low in in vit d and just a little low in calcium ,and the megoblastic anemia,I’m hoping that the B-12 shots will work coz it’s just awful . I hate feeling like this .

[Sleepybunny]

Hi,

Sorry to hear you are worried.

Sources of support

PAS (Pernicious Anaemia Society)

They can offer support and info about PA.

Based in Wales, UK, has members from around world.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS support groups in UK

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

Person who runs B12 Deficiency Info website organises occasional B12 Cafes in Leicestershire.

B12d.org has support meetings near Durham.

b12d.org/event

I am not medically trained.

Link about "What to do next" if B12 Deficiency is suspected

b12deficiency.info/what-to-...

"I have to have 6 over two weeks"

What B12 treatment will you get after 6 loading jabs are over?

Do you have any neuro symptoms eg tingling, pins and needles, tremors, memory problems, poor balance, tinnitus plus other possible neuro symptoms?

If yes and you're in UK, I suggest reading links below. In UK, patients with b12 deficiency with neuro symptoms are supposed to have more intensive treatment than those without neuro symptoms.

UK b12 treatment, patient without neuro symptoms

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

UK B12 treatment, patient with neuro symptoms

A B12 jab every other day for as long as symptoms continue to get better then a jab every 2 months.

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

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

NICE CKS

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

What does GP think has caused your low B12?

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Has GP tested you for PA (Pernicious Anaemia)? Coeliac disease? H pylori infection?

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

More B12 info in pinned posts on this forum.

Some forum members have found that b12 deficiency is not always as well -understood as it could be amongst doctors. It may be helpful to do some reading.

From personal experience I know that being worried and anxious can be part of b12 deficiency symptoms. Hopefully things will improve when treatment starts.

B12 and mental health

b12deficiency.info/b12-and-...

martynhooper.com/2017/01/22...

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

[Janeylou69 in reply to Sleepybunny]

Hi thanks for all your help ,the doctor seems to think my body is not absorbing it yes I do get pins and needles in my arms legs hands and occasionally tinnitus, he tested me for coeliac disease and h pylori they came back negative .

[Sleepybunny in reply to Janeylou69]

Hi again,

If doctor thinks you are not absorbing B12, have you been tested for PA (Pernicious Anaemia)?

In UK, people with suspected PA are given an Intrinsic Factor Antibody test. IFA test can help to diagnose PA but test is not always reliable and it is still possible to have PA even if IFA result is negative or normal range.

Your doctor may not be aware that it is possible to have Antibody Negative Pernicious Anaemia. See flowchart and BSH Cobalamin and Folate Guidelines link and Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and B12 Deficiency " for more info about Antibody Negative Pernicious Anaemia.

Intrinsic Factor Antibody test can give a false positive result if blood taken close to a B12 injection or B12 supplements.

labtestsonline.org/tests/in...

In other countries, people with suspected PA sometimes have a test for gastric parietal cell antiobodies but this test is not recommended in UK.

b12deficiency.info/b12-test...

Diet

Do you eat plenty of b12 rich food eg meat, fish, shellfish, dairy, eggs, foods fortified with B12? Has GP asked about your diet?

If yes then diet as a cause is less likely and it becomes more likely that there is an absorption problem.

"he tested me for coeliac disease and h pylori they came back negative"

Which tests did you have for Coeliac disease?

In UK, two first line tests are recommended.

1) tTG IgA

2) Total IgA

My experience is that Total IgA test is not always done but I think it's an important test as people with IgA deficiency will need different tests for Coeliac disease.

If you did not have Total IgA test, I'm not sure doctor can be 100% sure you do not have Coeliac disease.

NICE guidelines Coeliac Disease (2015 version)

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

Coeliac blood tests

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

Access to Medical Records (England)

One of the best pieces of advice I had was to always get copies of all my blood test results.

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

nhs.uk/chq/pages/1309.aspx?...

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and 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 with lots of case studies.

Blood tests

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

Folate Deficiency

patient.info/doctor/folate-...

"yes I do get pins and needles in my arms legs hands and occasionally tinnitus"

These are neurological symptoms and if you are in UK, my understanding is that you should be on neurological treatment regime ......

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

Is your doctor aware of the potential neuro consequences of under treatment of B12 deficiency?

PAS news item

pernicious-anaemia-society....

Link about writing letters to GP about Under Treatment of B12 Deficiency with Neuro Symptoms

b12deficiency.info/b12-writ...

I hope you get the help you need.

[Janeylou69 in reply to Sleepybunny]

Hi sleepy bunny thanks very much for your reply ,I have the sudden shake where my arm or just shakes on it’s own for a second ,very strange ,I’m not sure if I was tested for pernicious anemia, I don’t eat a lot of dairy coz I wasn’t always eating breakfast and I don’t like fish apart from fish fingers and I don’t eat a lot of meat mainly chicken now and again , there’s definately a lot to think about and talk to my doctor about Thankyou xx

[Sleepybunny]

Hi,

"I’m not sure if I was tested for pernicious anemia"

Might be worth getting copies of test results/medical records so you can see what tests have been done. See Access to medical Records links in post above if UK based.

Flowchart below outlines when PA and Antibody Negative PA can be diagnosed in UK.

stichtingb12tekort.nl/weten...

If you think PA is a possibility, may be worth joining PAS. See PAS link in my post above.

If your diet is restricted in terms of B12 rich food , it might be worth talking to GP about diet. In UK, B12 deficiency caused by diet is often treated by giving patient low strength oral cyanocobalamin tablets but ......

BSH Cobalamin and Folate Guidelines make it clear that anyone with B12 deficiency with neurological symptoms should be on B12 neurological treatment regime, whatever the cause of B12 deficiency.

It is possible for people to have more than one cause of B12 deficiency at the same time.

Unhappy about Treatment ? UK info

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

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

hdapatientcaretrust.com/

I am not medically trained.

[Janeylou69 in reply to Sleepybunny]

Thankyou very much I will look into that ,there’s lots of possibilities xxx