PA, vit D def and Vitilgo.

[SarahFerguson]

Yes, I've got the lot. Just had my yearly appt with dermatologist re Vitiligo, also mentioned recent diagnosis of VitD def. Consultant has given me a script for loading dose of vit D then asked me to go for bloods in month - looking at blood form he's testing B12, U&E's vit d FBC liver and Bone plus TFTS (Thyroid) . I am worried that he's testing my B12 levels. ? I am now worried the GP will stop B12 injections as my levels are gonna be high as I am sI.

[holehead]

Hi Sarah

It's always a worrying time having blood tests as you don't know what the outcome is, did you mean at the end you are self injecting b12 if so then it's your decision when to stop or continue. Keep strong

[SarahFerguson in reply to holehead]

Hi holehead, yes I am self injecting (roughly every 2/3 weeks) I am also having nurse inject at surgery every 8 weeks. I know that when on B12 regime because of PA that B12 Levels are not suppose to checked, obviously going to be high result . My worry is that GP will see my B12 levels and remove my 8 weekly jab done by the nurse on the NHs. I've had such a battle getting this far for them to refuse it now would be a kick In The teeth!

[SarahFerguson in reply to SarahFerguson]

On another note: dermatologist also wants thyroid tested!

[holehead]

Have you got a copy of the NICE guidelines on B12 medication and Gps responsibility. With PA then B12 is for life. If you haven't been on the Pernicious anemia society website then I would encourage you to look at the info and you can join if not already for support.

Mark

[JGBH]

Hi SarahFerguson,

If you have PA then GP must not stop your B12 injections. As already mentioned by holehead make sure you give a copy of NICE guidelines (highlighting relevant parts for you), as well as British Haematology Society guidelines and PAS recommendations. Also point out to your GP that testing for B12 once treatment has started is pointless has it should indicate a high level, which is normal, but that does not mean the B12 treatment should stop. If you have PA, B12 injections are for life. Also point out that it is impossible to overdose on B12 since it is a water soluble vitamin and any excess is excreted in urine.

Don't give up, although we all understand how exhausting it is to have to battle for the right to treatment... We should not have to do that but if we don't, our health will only get much worse and we will not have any quality of life whatsoever, so keep on fighting for your right to treatment. Since I have joined this forum I have become very aware of the general negligence and lack of care that GPs appear to operate with. There is no health service anymore... thing of the past. We are so lucky to have the support and advice provided by the members of this forum. Good luck.

[holehead]

Totally agree don't let the doctors tell you it is ok to stop make sure they see the guidelines or read them to your gp and take a chaperone so they know you mean business and cant fob you off

Mark

[JGBH]

Indeed do take a friend with you as a witness and insist on treatment by explaining clearly the reason for which you need the B12 injections regardless of levels of B12 from blood results.

When there is a witness present the GPs have no option but paying attention. We should not have to resort to that but when pushing against a brick wall you need all the support you can get.