Advice please

[Bamboo71]

So I first got my B12 checked (October) and it was 148 so started on 5 loading doses over 2 weeks then told next one due 12weeks later. I had a wee blip of feeling a bit more normal but now my headaches have returned and feel like I’m going back to square one again. My GP last week checked my B12 again and it’s now 916 so he said it’s fine now? I don’t feel fine now 😞 I always thought you can’t test after starting treatment but shouldn’t this have been higher after treatment?

[Nackapan]

Tou ate right to think treatment should continue every other dat until no further improvements. Headacheacareca neurological symptomsAsk in a letter to have the treatment recommended by 'their bible's

Bnf guidelines.

I had to fight fir thus as same happened to me. I hot to 5 weeks and was very very ill. No wat could I get to 3 months.

One test is often done??

But levels should be high on injections and not used to stop treatment

Ni further testing should be done

[Akshay145]

Hi. Me too have the same story, 3 weeks back I have also tested for vitb12 deficiency 131, had my loading inj of mecobalamine 5 for alternate days.. currently on oral multivit b12 ..I still feel tired, chronic headache/pressure. My Doc told.me that it will take few weeks to form new red blood cells, so patience is the key my friend.

[fbirder]

It sounds like the GP who measured a diabetic's blood glucose and said "well, you are fine now. You can stop your insulin".

[helvella in reply to fbirder]

Did you hear the one about the GP who said "My bank account is in range now, so you can stop paying me"?

[Bamboo71 in reply to fbirder]

I had a telephone consultation this afternoon, sadly with the same Dr. I told him my headaches were back, my neck is sore & feels swollen and still have all the other symptoms I had before. He was silent for a while then said, actually this has nothing to do with your B12 as your levels are in the 900’s now.....I think this is actually anxiety so the antidepressants I put you on are clearly not working so stop taking them now and after 5 days start these ones I’m away to prescribe you. I had a list of further tests I wanted done to rule out/check other things but I didn’t bother talking anymore as he wasn’t going to listen to me. I came off the phone and cried, he’s just made me feel like I’m going off my head! I’m sick of feeling like this now

[fbirder in reply to Bamboo71]

A week or two back Sleepybunny posted a link to a paper that had a list of Myths about B12. One of the myths was something about being able to stop injections when levels are high.

[Sleepybunny]

Hi,

Some links that may be of use.

I've assumed you're in UK.

Have you considered joining PAS who can offer support and useful info?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Link about "What to do next" if B12 deficiency suspected or newly diagnosed.

b12deficiency.info/what-to-...

"so started on 5 loading doses over 2 weeks then told next one due 12weeks later"

Do you have any neuro symptoms?

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

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

Peripheral neuropathy can be associated with B12 deficiency.

Symptoms of Peripheral Neuropathy

nhs.uk/conditions/periphera...

1) For those without neuro symptoms, the recommended treatment pattern is...

6 B12 loading injections over 2 weeks followed by a B12 injection every 2 - 3 months

2) For those WITH neuro symptoms, the recommended treatment pattern is...

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

There is no set time limit for how long the every other day loading injections can continue. it could be weeks even months if patient's symptoms continue to improve. See BNF, BSH and NICE CKS links below.

You appear to have been put on the first treatment pattern; for those without any neuro symptoms.

Don't let the GP get away with under treating you if you have neurological symptoms. There can be severe consequences if a patient with b12 deficiency is under treated.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

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

pernicious-anaemia-society....

Dietary B12 deficiency is sometimes treated with low dose cyanocobalamin tablets.

I suggest putting queries about treatment into a brief, polite letter supported by evidence. See letter writing link below.

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

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

UK B12 documents/articles

BSH Cobalamin and Folate Guidelines

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

BNF Hydroxycobalamin

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

NICE CKS

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

BNF Folic Acid

bnf.nice.org.uk/drug/folic-...

Local Guidelines

Each CCG/Health Board/NHS hospital trust in UK will have its own local guidelines on treatment/diagnosis of B12 deficiency. Some of these local guidelines differ from what is recommended in BSH guidelines.

I suggest you track down the local guidelines for your area of UK and compare them with BSH, BNF and NICE CKS links.

I hope you are not in the area below which has a poor reputation on this forum for how people with B12 deficiency are treated.

b12deficiency.info/blog/202...

Other articles that might be helpful.

B12 article from Mayo Clinic in US

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

Table 1 in above article is about frequent misconceptions about B12 deficiency.

Testing B12 during treatment (PAS article)

pernicious-anaemia-society....

Misconceptions about a B12 deficiency (English article from Dutch B12 website)

Units and reference ranges may vary from those in UK.

stichtingb12tekort.nl/weten...

Testing B12 during treatment

Units and reference ranges may vary from those in UK.

stichtingb12tekort.nl/engli...

Useful B12 book

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). BNF treatment info in book is out of date. See BNF Hydroxycobalamin link in this reply for up to date info.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Lots of B12 info in my replies on the the thread below eg symptoms, causes of B12 deficiency, B12 books, B12 websites, more B12 articles/documents, useful blood tests and a few hints about dealing with unhelpful GPs.

healthunlocked.com/pasoc/po...

I have written other very detailed replies on the forum that you might find helpful.

I am not medically trained.