Results

[Moggie]

Morning all,

Got my intrinsic factor results yesterday and they are only sitting at 2 (0.0 - 24) so am now wondering where I go from here. My aim is to get my GP to trial me on weekly injections for a month to see if there is an improvement in my balance, my mental capacity and my overall tiredness. If she doesn't go for this then I will ask her how much it will cost me private and if she is not willing to do this then I am stuck. Is there any other test I can ask for that is more reliable than the IF test, baring in mind that I have been on 5,000iu B12 daily for the last 3 years. I can feel myself getting worse daily, my balance is appalling and I am having to drag myself around through sheer grit at the moment. I had an awful experience last week when, whilst driving, I suddenly did not know where I was. I have travelled that same road many a time so why did this happen????

Any help would be appreciated as my appt is tomorrow night and I intend to go into battle to get what I want.

Thanks for reading

Moggie

[clivealive Forum Support]

Hi Moggie

Make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

It is also important that your Folate level is monitored as this is essential to process the B12.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

I am not a medically trained person but I've had Pernicious Anemia (a form of B12 deficiency) for more than 46 years.

I wish you well.

[Moggie in reply to clivealive]

Thanks Clive,

My GP is quite good as I have been dealing with her for a number of years because of my thyroid illness. She wasn't very good to start but once she knew every test I was asking for was coming back very low (vitd, ferritin) she then changed her attitude towards me.

I have run through my symptoms with her, which is why she agreed to do the test, but will be going back and, like I said, asking for a months trial (4 injections) but whether she will go for this is doubtful. Have you any idea how much a GP's surgery charges for private injections by any chance.

If she doesn't agree to a dummy run with the injections then she needs to give me some answers as to why I am feeling so awful and why, when I bent down yesterday to take my dogs lead off, I nearly toppled over as I am not living my life like this.

Thanks for your help.

Moggie x

[clivealive Forum Support in reply to Moggie]

Sorry I know nothing about private costs. If you doctor doe agree to give you injections initially, replacing B12 will lead to a huge increase in the production of blood cells and platelets (which occurs in the bone marrow) and can lead to rapid depletion of folate and iron stores; this can then limit the expected recovery of Haemoglobin. Both iron and folate may be needed whereas giving Folate to a B12 deficient person without B12 can lead to an irreversible exacerbation in neurological features.

If you are prescribed both B12 and folic acid ensure you have the B12 a day or so before the folic acid.

You could refer your doctor to The British Society for Haematology guidelines which say on the Diagnosis of B12 and Folate Deficiency "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment".

google.co.uk/url?sa=t&rct=j...

Please remember I am not medically trained.