Treatment stopped

[sallyloade]

I had my b12 3 monthly injections stopped after 22 years of treatment. I would be interested to know if anyone else has had a gp do the same.

Thanks Sally

[Hidden]

Why has he stopped your treatment Sally?

[sallyloade in reply to Hidden]

I had a high b12 count. After 22 years of injections. Nurses said no need to come again. I insisted doc redid count. All I get is no further action.

[sallyloade in reply to sallyloade]

My gp(gormless prat) thinks my anxiety has latched on to b12. And my high count is far toooo high. Sending me to mental health nurse. Be cheaper to inject me.

[Hidden in reply to sallyloade]

Good grief. Change your Doc and tell that mental health nurse thank you but no thank you. Download fbirder's document and shove it under his nose. I have a wonderful GP but he has lied to me about the MMA test saying the lab they use doesn't have the 'right machine for the test'. Getting help for this illness is so hard and forces you to treat yourself.

[fbirder in reply to sallyloade]

Have a look at my summary (Gambit62 has linked it below). The two bits your doctor needs to red are:

Further testing of serum B12

and

High serum levels of B12

To summarise:

Testing B12 after supplementation has started is stupid.

Being worried about high B12 is stupid.

[Gambit62 Administrator]

Unfortunately you are not alone - this seems to happen to a lot of people - part of the myth that all there is to B12 is the serum levels I suspect.

Did your GP give a reason for stopping our treatment? Whatever, if you have an absorption problem it is the wrong course of action - and quite probably an act of incompetence on the part of your GP.

NICE guidelines include the need to explain to patients that treatment with B12 is for life

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

second bullet point under 'advise the person that'.

quite possible that fbirder may have some specific documentation that you can pass to your GP as part of his summary document

frankhollis.com/temp/Summar...

the PAS have also produced a short one pager on treatment which can be accessed here but you need to be a member

pernicious-anaemia-society....

There is also mention of this in a recent PAS newsletter - see p3 - section on treatment

pernicious-anaemia-society....

again, you may need to be a member to access it.

Would strongly recommend you join - it isn't that expensive - and if you continue having problems with your GP then you can ring them and they may be able to intercede for you.

[fbirder in reply to Gambit62]

quite possible that fbirder may have some specific documentation that you can pass to your GP as part of his summary document

Yup. The latest version includes this section from the BMJ paper -

In irreversible cases, for example, pernicious anaemia, the treatment should be continued

for life. For temporary causes, such as pregnancy, the treatment can be reviewed when the patient is fully replete and the causative agent removed.

I can't imagine any possible temporary cause that would last for 22 years.

[sallyloade]

They can't understand my anxiety. My family can, it's not rocket science.

[Hillwoman]

This has happened to me too. I haven't had a B12 shot from the GP since 2010. I had long periods without treatment after that, but I managed to persuade a private doctor I was seeing for something else to treat me with hydroxocobalamin every two weeks. That arrangement ended in 2014 when the clinic closed on his retirement.

I discovered the wonderful (but small and struggling) B12D charity towards the end of 2014 by joining this forum. I've since treated myself with methyl-B12 supplied by the charity. The first two weeks were nerve-racking, as are the breaks in supply, but I'm so glad I took things into my own hands.

[Polaris]

I'm beyond shocked sallyloade at GP's ignorance - needs to take note of all the information already given and, if won't read anything else, the following should be given in writing to the surgery:

cmim.org/pdf2014/funcion.ph...

Cmim/BMJ document. Important points from the Summary, etc:

* Vitamin B12 deficiency is a common but serious condition

* If clinical features suggest deficiency, then it is important to treat patients to avoid neurological impairment even if there may be discordance between test results and clinical features.

* Page 4 under 'Parental Treatment' :

In irreversible cases, for example, pernicious anaemia, the treatment should be continued for life."

The above BMJ research document is supported by many research papers and is peer reviewed. It also states that, once b12 treatment is started, the test results don't mean anything and blood levels are not reflective of how effective the treatment is - it is the clinical condition of the patient that matters - bottom of page 4 under 'How is Response Assessed' :

"Cobalamin and holotranscobalamin levels are not helpful because they increase with vitamin B12 influx regardless of the effectiveness of treatment,24 and retesting is not usually required."

[Sleepybunny]

Hi Sally,

So sorry to hear that your injections have been stopped.

PAS

Have you thought about contacting the PAS (Pernicious Anaemia Society)? the office is closed until 15th June but I think phone messages can be left.

pernicious-anaemia-society.... 01656 769 717

E-mail contact on this page pernicious-anaemia-society....

Lifetime membership costs £20. In some cases they can intervene on members behalf.

Similar stories to yours can be found on Martyn hooper's blog. See links below. Martyn explains what he can do to try to help.

martynhooper.com/2016/04/30...

martynhooper.com/2016/04/24...

Writing Letters to GP

This next link is to a page that gives help with writing letters to GPs etc if unhappy with treatment. the person who runs the website is helpful and can be contacted by e-mail.

b12deficiency.info/b12-writ...

BCSH Cobalamin and Folate guidelines

I gave a copy of the above guidelines to my GPs. details of UK recommmended treatment can be found on page 8.On page 29 is a diagnosis flowchart. Both these pages I think mention that treatment for PA should be for life.

patient.info/doctor/pernici...

see Management section in above link.

It helped me to give my Gps a copy of Martyn Hooper's latest book

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency"

Another useful UK B12 website

b12d.org

[MariLiz]

Get in touch with the Pernicious Anaemia Society, this seems to be happening to people with depressing regularity. They may be able to help you impress on your doctor that B12 injections are for life! Regardless of blood serum levels.