B12 injections feeling swful

[Louiseengland1]

Recently found to have a B12 level of 117 prescribed 5 injections over 2 weeks ever since my second I have been feeling lightheaded dizzy nauseous wiped out tired. I have been eating bananas and drinking coconut water but no change I have my last injection 5th injection tomorrow. Just wondered if anyone else had the same experience?

[Sleepybunny]

Hi,

Some forum members report feeling worse before feeling better. I'm curious as to why you have only been prescribed 5 loading injections.

What treatment is GP planning to give you after 5 loading jabs have finished?

Recommended UK B12 treatment for B12 deficiency without neuro symptoms is.....

6 B12 loading jabs over 2 weeks followed by an injection every 3 months

For B12 deficiency with neuro symptoms, recommended UK treatment is ...

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

Do you have any neurological symptoms? See links to Symptoms lists.

I'm assuming you're in UK.

I'd suggest reading as much as you can about b12 deficiency. Many of us on this forum have found out to our cost that B12 deficiency is not always as well-understood as it could be by some doctors.

What does your GP think is causing the B12 deficiency?

Do you eat a diet with plenty of b12 rich food eg meat, fish, shellfish, eggs, dairy, foods fortified with B12?

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

Have you had tests for PA (Pernicious Anaemia)? In UK, this would usually be an Intrinsic Factor Antibody (IFA) test. It is still possible to have PA even if IFA result is negative or normal range.

More B12 info

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/... (may need to be B12d.org member)

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

UK B12 documents

I'd suggest reading all of these documents if you're UK based.

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...

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.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS support groups in UK

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

Unhappy with 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/

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

Link about What to do next if B12 deficiency suspected

b12deficiency.info/what-to-...

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-...

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-...

Coeliac Disease

UK NICE guidelines Coeliac disease recommend anyone with unexplained B12 or folate or iron deficiencies are tested 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 Coelaic disease.

NICE guidelines Coeliac Disease (2015 version)

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

Coeliac blood tests

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

H Pylori infection

patient.info/health/dyspeps...

Most important thing I learned was to always get copies of all my blood test results.

Access to Medical Records (England)

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

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

I am not medically trained.

More B12 info in pinned posts on this forum.

[blood_orange in reply to Sleepybunny]

I just discovered that my local health board’s protocol for treating B12 deficiency with neurological symptoms is 5 loading doses, then a monthly injection for 3 months, then quarterly maintenance doses. I managed to talk my GP into going with the NICE guidelines, but that may explain the 5 doses. It wouldn’t surprise me if it’s based on the fact that there are 5 ampoules in a box.

[Sleepybunny in reply to blood_orange]

Hi again,

"I managed to talk my GP into going with the NICE guidelines"

If GP is following NICE guidelines and you have neuro symptoms, surely they should be giving you neurological treatment regime?

A B12 jab every other day for as long as symptoms continue to improve, then a jab every 2 months

A maintenance jab every 3 months may not be enough for someone with neurological symptoms.

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

b12deficiency.info/b12-writ...

Details of neurological treatment regime for B12 deficiency can be found in BNF, NICE CKS and BSH Cobalamin and Folate Guidelines links in my post above.

It's vital to get correct level of treatment with B12 deficiency. If you have B12 deficiency with neuro symptoms and do not get adequate treatment , further deterioration may occur including the possibility of spinal damage.

Is your GP aware of the neurological consequences of under treatment of B12 deficiency?

Neurological Consequences of B12 Deficiency

PAS news item on Neuro Consequences of PA

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord, available to PAS members only.

pernicious-anaemia-society....

Blog post from Martyn Hooper's blog, mentions SACD

martynhooper.com/2010/09/21...

I hope they've tested you for PA.

Flowchart link in my post above makes it clear that in UK, people who are symptomatic for B12 deficiency should have an Intrinsic Factor Antibody (IFA) test. Flowchart mentions it is possible to have Antibody Negative PA. Some UK Gps may not be aware of the possibility of Antibody Negative PA.

Do you have any blood relatives with PA, B12 deficiency or other auto-immune conditions?

PA can run in families. Having auto-immune conditions in family can increase the chances of developing an auto-immune condition.

If you suspect PA, I'd suggest joining and talking to PAS. PAS contact details in post above.

[blood_orange in reply to Sleepybunny]

Thanks Sleepybunny. My GP’s default position was to go with the health board guidelines of just 5 loading doses. I argued her into following the NICE guidelines and continuing loading doses. If I hadn’t brought a print-out of the appropriate BNF and CKS pages, I’m pretty sure she’d have stuck with just the 5 doses. She seemed surprised that they hadn’t fixed me. The battle over the mainataince regime is yet to come, at the moment I’m just pleased to have more loading injections. My IF antibody test was negative, but my GP is aware that doesn’t rule out PA. I have joined PASoc.

Louiseengland1

[blood_orange in reply to blood_orange]

Sorry, pressed send by mistake. I wanted to apologise to Louiseengland1 for hijacking this thread. The last couple of weeks of loading injections have been up and down for me. It’s been useful for me to see from other people’s accounts on this community that it’s common to sometimes feel worse before you feel better. I hope you feel better soon.

[Louiseengland1 in reply to blood_orange]

No problem blood_orange

I have just seen my GP he said don’t have my last fifth injection go and buy some tablets now as I have been feeling so awful on the injections, he said didn’t know why my levels were low at 117 but don’t really worry about it 🤔🤔

[blood_orange in reply to Louiseengland1]

Hmm. Undertreatment of B12 can be dangerous. Tablets will only help if your digestive system can absorb B12. Have a read through Sleepybunny ’s excellent advice above. I did see someone post here saying that anti-histamines had helped with a bad reaction to injections.

[Sleepybunny in reply to Louiseengland1]

" just seen my GP he said don’t have my last fifth injection go and buy some tablets now as I have been feeling so awful on the injections, he said didn’t know why my levels were low at 117 but don’t really worry about it"

Must admit I muttered rude words when I read this. I think a B12 level of 117 is a cause for concern. Are the units pmol or ng/L?

What strength B12 tablets did GP suggest? What type of B12 tablets eg cyanocobalamin, hydroxycobalamin, adenosylcobalamin, methylcobalamin?

Has GP checked your potassium levels? Sometimes people experience a drop in potassium levels (hypokalaemia) when they start B12 treatment. See Side effects section in BNF link below.

BNF

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

Potassium test

nhs.uk/conditions/Potassium...

labtestsonline.org.uk/tests...

Do you have the reference range for B12 for your area of UK? A typical ref range for B12 would be 200 - 900 ng/L but ref range varies across UK.

Blog posts about UK B12 ref ranges

b12deficiency.info/blog/201...

b12deficiency.info/blog/201...

I'd suggest ringing PAS for support. Hopefully PAS can pass on info about effects of starting B12 treatment.

PAS Contact details. Best to phone.

pernicious-anaemia-society....

There are a few people who have allergic reactions to B12 treatment. Has your GP excluded this as a possibility? PAS library has an article on "Doctors that treat patients allergic to B12"

Useful article in PAS library "An Update for Medical Professionals: Diagnosis and Treatment"

pernicious-anaemia-society.... See Page 1

Might be worth passing above article to GP.

PAS website has a section for Health Professionals which your GP might find helpful.

pernicious-anaemia-society....

Health professionals can join PAS for free, as associate members.

If GP does not know why your levels are low, have they

1) Asked questions about your diet?

If your diet has plenty of B12 rich food eg meat, fish, dairy, eggs, foods fortified with B12 then diet as a cause becomes less likely and it becomes more likely that there is an absorption problem.

2) Looked at alcohol intake and any medication/drugs you take?

Some drugs can interfere with folate or B12 metabolism

3) Tested for H Pylori infection?

4) Tested for Coeliac disease?

5) Checked blood results for signs of parasitic infections?

Fish tapeworm can lead to severe b12 deficiency.

b12deficiency.info/blog/tag...

See Risk factors links in my post above.

Also wondered if you have had tests for Thyroid disease.

It's quite common for people on this forum to have thyroid problems as well as b12 deficiency. Might be worth putting any thyroid results on Thyroid UK forum on HU. In UK, GPs sometimes only test TSH, which won't give a full picture of thyroid function.

thyroiduk.org/tuk/testing/t...

thyroiduk.org/tuk/testing/i...

Folate, ferritin, Full Blood Count

Has GP checked folate, ferritin or other iron tests and full blood count? More info on these in blood test links in my earlier post.

Sad to say, I've come to the conclusion that for many on this forum, you have to become your own expert on B12 to stand a chance of getting appropriate treatment.

[clivealive Forum Support]

Hi Louiseengland1

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.

Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

If you can get to see a doctor please also ask him/her to check your Folate level as this and B12 help your iron to make red blood cells and to function properly.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well

.