My b12 levels were 98

[Happy-go-lucky]

Now I think this is pretty low. I did have loading doses about 5 weeks ago but am still get shivers. So was thinking of getting b12 spray. I will be getting shots every 3 mths for life.

[Gambit62 Administrator]

Not clear if you are saying that your B12 is now 98 after the loading shots you have received or if it was 98 before the loading shots ... and not clear if you are talking about active B12 or serum B12 - if serum B12 then level is definitely low.

Looking through your posts one mentions that you have nerve damage.

The NICE guidelines for B12 treatment where there is neurological involvement are

* Seek urgent specialist advice from a haematologist.

* Ideally, management should be guided by a specialist, but if specialist advice is not immediately

available, consider the following:

- Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days until there is no

further improvement, then administer hydroxocobalamin 1 mg intramuscularly every 2 months.

Have you tried explaining this to your GP? If they won't listen then like you I'd be looking at ways of self-supplementing - which is what I did when my GP shut down any talk on B12. If you go for a spray then I would definitely recommend that you look for one that is either hydroxocobalamin or methylcobalamin. Can send you a link to hydroxocobalamin which definitely worked for me ... and thinking about trying methylcobalamin in case that is more effective but will be a few weeks at least before I've tried that.

[Happy-go-lucky in reply to Gambit62]

Thanks I just wrote it quick. It was 98 before the loading doses. But still getting some symptoms. But just keep thinking they might go in time. They are going to give anther blood test

[Gambit62 Administrator in reply to Happy-go-lucky]

When are they doing the test - it is unlikely to be useful if they do it now as your system is going to be flooded with B12 from the loading shots. If you are supplementing before the next test then you need to let GP know as that will affect the test results ... and would only really be a significant result if the test showed that your B12 is continuing to be low.

You hear so many people who are told by GPs that their levels are back to normal so there is nothing to worry about ... and so many people, myself included who are told that what they are feeling can't possibly be B12 because they are receiving injections it is quite scary.

My big concern personally is that you don't seem to be getting the right treatment in terms of loading doses and they ought to be addressing that rather than leaving you to suffer because they aren't doing things properly.

For the record the NICE guidelines where symptoms recur before maintenance shots is

* If a person's symptoms recur before the next injection is due, seek specialist advice from a haematologist.

I know that you are probably feeling so tired right now that you don't feel you can face a talking to GP and everything is foggy and concentration is difficult but please go back to your GP and discuss whether you have actually had the correct treatment in terms of loading doses.

It may be that they don't consider the symptoms you mention to be neurological ... which would be a bit awkward ... but if you are suffering pains and numbness and you mention tremors if I understand what you are saying about shivers properly ... then those should count as neurological symptoms.

[Happy-go-lucky]

I have low iron as well. But they are going to give me a injection every 3 mths. Maintenance shots. Maybe am just impatient. I did try to talk to the doctor on Monday and he said my body needs to get used to the new b12 in my system

[Gambit62 Administrator in reply to Happy-go-lucky]

What evidence dose he have for that remark? Frustrating.

He seems to be treating you on the basis that you have no neurological symptoms and I think that should be your first challenge.

If his remark means means that your body needs time before the effects of the B12 really start to kick in then that may be true but if so it sounds as if he is expressing himself very poorly ...

On the face of it the remark is like saying to a diabetic that you can't have any more insulin until your body gets used to having insulin. You need to get your B12 levels up properly so that the healing process can really start to take effect. If that doesn't happen then there is a real danger that you may not heal properly, or that you could even get worse.

B12 isn't about anaemia it is about healthy cell production which can lead to anaemia ... and a whole lot of other horrible things.

Sorry ... think my B12 levels must be getting a bit low as this is sort of winding me up and I'm getting a bit obsessive.

Really hope that you can manage to talk to him about the treatment you are getting and whether it really is in line with the NICE guidelines ... and if not may be he could come up with a more rational and scientific explanation than the one he seems to have at the moment.

[Gambit62 Administrator in reply to Gambit62]

Sorry - need to be clear on this - not you that is winding me up - is your GP and his attitude.

[Poppet11]

Visions of Gambit smacking head on desk!!!!

Happy - print off the BMJ article, give it to your doctor and ask him if your current symptoms are due to permanent nerve damage because he didn't pick up on your deficiency quickly enough?

It probably won't get you anywhere but I would like to hear what colour his face went.

[Happy-go-lucky]

I know I had to fight for the tests but was hypothyroid first then got b12 defiency then pernicious anemia. The nurse Said that shots every 3 mths is standard. I will investigate. Do you get them every 3 mths?

[Poppet11 in reply to Happy-go-lucky]

Nursie wants to be reporting the return of your symptoms to the GP. Nursie is only a nurse not a diagnostician.

You can tell I've got them on tonight.

They wanted me to inject every three - told them I'd do it myself when I wanted. I'm none compliant - but then again I am alive and if it had been up to them I wouldn't be.

[Happy-go-lucky]

I had 6 loading doses and then every 3 mths is this not enough

[Poppet11 in reply to Happy-go-lucky]

If it doesn't reverse your symptoms then it is not enough. You could ask them to investigate what else could be causing your symptoms - or they may even offer.

[Gambit62 Administrator in reply to Happy-go-lucky]

Please see my comments earlier on the correct treatment if you have neurological symptoms. Question to ask is 'am I being treated following the protocol for neurological symptoms.'

[Rosiered]

sprays are ok but I find that patches are better. (see Amazon) I get my shots every 2 months because the three monthly time period left me on my knees!!

[Jcwg]

Hi, if you have neurological involvement, the guidelines state that you should be given an injection of b12 every 8 weeks, I give myself the injection, and in last nowhere near eight weeks, on going struggle with GP for more.

[Polaris]

If you want to print off or email your GP the links already mentioned above, these are:

ukneqas-haematinics.org.uk/...

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

I have done this in an attempt to get more frequent injections for a family member with neurological involvement. Still awaiting a decision. Good luck Happy

[Happy-go-lucky]

Thanks guys am always worse before and during period but I just have to get on with it and stop moaning