low B12 and issues with loading dose- do I go back to GP?

[Crazycatlady82]

Hi everyone, I am new here so just learning how to navigate the site but seen some really useful posts already!

I went to GP with lots of symptoms but the main ones were extreme fatigue, sleeplessness, confusion, memory fog and night sweats. I actually thought it was early menopause but I was instead diagnosed with B12 Deficiency. My serum level was 145- is that particularly low?

I was advised to start the loading dose of B12 injections immediately and that I needed one every other day for 2 weeks. When I booked in with the nurse, they were not every other day. In fact between 2 of the injections there was a 10 day gap. I have finished the loading dose now and now move to 3 monthly ones and next one due in Feb.

My question is will the fact my loading doses were not as regular as the Dr ordered affect whether it would have worked? I feel worse than ever and can barely keep my eyes open, the confusion still very present.

Otherwise I assume it just takes time for the B12 injections to take effect?

Any help or experiences really appreciated.

[Nackapan]

Sounds likd they need to continue.Every othef day shoukd continue until no further improvements .

Nice guidelines state this if neurological symptoms present.

Don't worry about the 10 day gap.

Other countries think weekly initially.

When you ask if that level particularly low it's s difficult one to answer.

We all operate at different levels.

My first ever b12 level was 106 (200-900)

Some have in range reading but very ill.

Some get a result of zero!!

You are right .

Time is needed for repair work.

[Pickle500]

To be honest, I think it depends.

I had quite severe neuropsychiatric symptoms that I could only fully resolve with every other day treatment, and then every day treatment. The every other day felt like I had come out of the deep end of the ocean by the end of the first week - I'd been locked into some strange other world.

But everyone is different with different reactions and needs. So follow your heart/gut and if you think the 10 day gap has affected things then go back for more. Push them for every other day - after all, those are the guidelines. If you have confusion and memory fog, these are neuropsychiatric/neurological symptoms - NICE guidelines say every other day injections are needed.

Particularly since your symptoms have not resolved much, I would suggest you call the surgery to let them know that your symptoms haven't abated and that you checked the guidelines and they suggest every other day injections should be given 'until no further improvement'.

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

Otherwise, self-injection may be a route you'll need to take.

So I would give it a go, call them in the morning and push them hard for ongoing EOD injections. Good luck

[Sleepybunny]

I think the GPs have put you on a pattern of treatment meant for those without neuro symptoms.

As you've mentioned neuro symptoms such as brainfog and confusion, I think your GPs need to put you on the treatment pattern for those with neurological involvement.

Do you have any other neuro symptoms?

Have a look at symptom lists below.

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... (from B12 Institute Netherlands)

Link below mentions B12 deficiency treatment in UK

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

so does this one

bnf.nice.org.uk/drugs/hydro...

Link about writing to GP if unhappy with treatment for B12 deficiency

b12deficiency.info/writing-...

See Point 1 in above link. It's about being under treated for B12 deficiency with neuro symptoms present.

Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books, B12 websites, B12 films and B12 articles and a few hints on dealing with unhelpful GPs.

Some links may have details that could be upsetting.

Some of the info will be specific to UK.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I'm not medically trained.