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

[Damacian in reply to Nackapan]

Thanks. Just finished EOD for 30 days. My next loading dose is in about 5 weeks which feels fine. I wanted to buy some online for fist time just in case I need some more to tie me over.

Have just bought these - Panpharma Vitamin B12 Depot 1000 µg/ml Injektionslösung, 10 pcs. Ampoules × 3 from Apohealth.de. Are they the correct ones? I wanted to keep Hybocobolamin.

Can I buy the needles and syringe from a normal chemist /pharmacy in the UK? Never done this before....I should have asked. the nurse when getting the EOD.

[Nackapan in reply to Damacian]

'Depot 'means hydroxcobalamin. 1mg/1ml

White box black writing red pattern .

Sounds ✅ right .

I've never tried to buy needles other than online.

I use exchange supplies .

Fof subcutaneous injections I use

30G 1/2 " to Inject

27-30G suitable

A 2ml syringe compatible with needles

A 21G to draw up the b12 ( change needle to inject )

I have IM at the surgery they use

23G 1"

Many use 26G 1"( finer)

A snappit device for snapping off the top of the ampoule useful

I thought I'd last longer after EOD stopped.

I did it slowly weekly for so many weeks then 2 weekly then 3weekly .

3 weekly for me proved a mistake and set me back.

3 steps forward 2 back .

I had 2 weekly for over a year ( prescribed)

Now after 5 years have settled for weekly .

I do so much more now .

Tried going longer bug again sets me back ??

Given up rating more red meat ect as seems to make no difference apart from higher cholesterol!!

Hope you find the regime that suits you

Have what you need to stay as well as possible

[Damacian in reply to Nackapan]

Thanks. The B12 has arrived. I want to do IM , so I just need a 23G 1" Syringe/Needle ?

[Damacian in reply to Nackapan]

sorry to be clear for IM are you saying that you need 21G to draw the B12 from the vial and a 23G1 to inject into the muscle?

[Nackapan in reply to Damacian]

Yrs it's useful to use a 21G to draw up the b12 then get rid of the air in the 2ml syringe .Then change to the needle you want to inject with .blue 23G is widely used in the surgery 1"

But many use finer say 26G..

For IM

I do SC at home and use 30G 1/2 "( 27-3oG suitable)

I have IM and sc .

Both work just as well.

[Damacian in reply to Nackapan]

Thanks - I had my b12 tested and it is still above 2000 even though I finished a whole month of injections every other day 3 weeks ago.

I am almost using as an excuse to not self Inject even though I know that I am not ‘100%’….

[Nackapan in reply to Damacian]

Go by your symptoms relief not numbers .We all need different regimes .

I was supposed to wait 3 months .

Was very ill and getting worse.

5 weeks later

Back on every other day on neurologist /nice guidelines and z quiet sit in my surgery.

Tried oral + sublingual high dose b12 to geg s bigger gap between injections.

Didn't work for me . Did nothing .

Cutting s long story short presently retain a 2 weekly prescription for n12 injections 💉

I have mostly sc which work just as well

[Damacian in reply to Nackapan]

I self injected and to be honest I feel awful. The B12 fatigue and body aches feel more pronounced than before? My last injection was 3 weeks ago and only took an injection a week ago to top up. Has anyone had this experience before? Can too much b12 in the system have these type of effects?

[Nackapan in reply to Damacian]

I got alot worse before better.How are you now ?

[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.