seeing neurologist, advice on b12 injections welcomed…

[Damacian]

hi all?

have been prescribed with PA.

My ferritin levels are normal - 177

Vitamin D- 70.

I have finished loading does for b12 last week. My last reading was 188 2 weeks ago but imagine it’s greater than 2000 now.

My folate was low - 3.5. My Gp has helpfully given me folic acid 5 mg a day which seems to help a touch and advised that I should come back in 12 weeks for a b12 maintenance dose.

my haematologist has asked to do some additional tests, I think for coeliac disease etc.

Given the tingling in my hands ands feet, I have referred myself through private access to a neurologist to investigate the numbness and tingling. This happened last year and was given all clear after some nerve tests.

My question is - should I be insisting that the neurologist recommend to my GP that I have weekly b12 injections given some of my symptoms still persist? My GP advise that the body takes time to absorb the B12 and haematologist indicates the same. However I read on here that the injections are really supposed to continue until fatigue and tingling etc stops completely?

The

[Nackapan]

Nice guidelines state every other day b12 injections with neurological symptoms One of the neurologists I saw said to have this as symptoms were severe .

G.p had already started this .

I was also booked for an Injection 12 weeks after loading .

I lasted 5 weeks so booked a b12 Injection

It was refused by nurse . I got to see a g.p

5mg folic acid is short term . I expect levels will be reviewed then a maintenence dose . Usually up to 400mcg.

Go by your symptoms .

Also clinical response to b12 injections

I think they mean it takes time for the b12 to heal .

It's absorbed very quickly as straight into your bloodstream .

It's how long you retain it and how high the levels have to stay to actually be able to use it.

[Damacian in reply to Nackapan]

Thanks. My neurologist has written to my Gp recommending continued doses until my neurological symptoms improve.

As an aside is there anywhere online where self injectable b12 can be bought?

[Nackapan in reply to Damacian]

Yes online German pharmacies are reliable. I use versandapo and buy panpharma .I inject subcutaneously

At the surgery they do IM for me.

So glad the neurologist suggested to continue ?1 weekly b12 injections 💉

[Damacian in reply to Nackapan]

Thanks I have tried versandapo but it is beyond confusing. Can you only pay using Amazonpay or Paypal?

[Nackapan in reply to Damacian]

It's often useful to pay like that to bypass putting a UK address in manually.Is there someone to help you?

Depot means hydroxcobalamin

[Damacian in reply to Nackapan]

Thanks. Will give that a go.

[Nackapan in reply to Damacian]

It bypasses the UK address so easier

[Damacian in reply to Nackapan]

Thanks. My neurologist had written to my GP to continue with another month of loading does given the prescence of tingling and occasional numbness etc. Advising that protocol means they should have continued. This was approved by a GP but challenged by my normal GP and nurses and was advised that the pattern of 12 weeks is rarely broken and a second round of loading doses are unadvisable and the nurse said that continued b12 be toxic? After some back and forth the GP approved every other day for 4 weeks.

My neurologist said that any excess b12 is simply expelled out of the system and no such thing as having too much?

My GP said that it takes a while for symptoms to subside so I guess how does anyone know if they need more doses or if in fact they just need to be more patient???

[Nackapan in reply to Damacian]

I had loafding doses then a 5 week gap as supposed to wait 12 weeks .My symptoms were awful do that's how I knew .

It's took a long time to make improvements that stayed .

Then finding thr right regime for you as a maintenence .

It wax the neurologist that said to continue with every other day with neurological symptoms until no further improvements as per Nice guidelines.

I remained on eod for about 5 months then weekly and so on.

It's a myth b12 is toxic ask for evidence

[Sleepybunny]

Hi,

In UK, I would expect you to be on treatment pattern for those with "neurological involvement" outlined in Indications and Dose section in link below.

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

You could also ask GP to check what it says in their BNF book Chapter 9 Section 1.2

I left a detailed reply in thread below with info I think you may find useful.

healthunlocked.com/pasoc/po...

One piece of advice - always get a copy of all blood test results.

Sorry for short reply - I have an arm injury that limits typing.

I'm not a health professional.