Absolutely raging.

[Parksy]

So spoke to head GP this morning, he said NICE guidelines say once levels are above 180 there is no more need for injections!!! So they have denied any further b12. He said the neurological symptoms could be down to another issue. Ready to give up

[Nackapan]

Well he hasn't read it properly.

Make a list of your symptoms puf it in a letter. Get help from PA society perhaps.

Say until they find the other issue! Tou need treatment with b12

[Parksy in reply to Nackapan]

We shouldn’t have to keep fighting like this for our health should we. Also when I’m low on b12 the confusion etc doesn’t help the ability to fight your case.

[Hidden in reply to Parksy]

Inject yourself . Forget about the doctors

[Gambit62 Administrator]

I would be inclined to write to the surgery pointing out that the current NICE pages on anaemia caused by B12 deficiency actually make no mention of any testing after loading shots and state that injections will be needed for life unless the cause is dietary (and even then it states that vegans may need treatment for life)

cks.nice.org.uk/topics/anae...

further the section on diagnosis makes it clear that reference ranges for serum B12 do not catch everyone who is B12 deficient.

cks.nice.org.uk/topics/anae...

The BCSH guidance on diagnosis and treatment of cobalamin and folate disorders is somewhat clearer on the problems with using serum B12 and that injections are for life independent of further testing (probably because they don't just confine themselves to instances of anaemia).

onlinelibrary.wiley.com/doi...

[Parksy in reply to Gambit62]

Thank you Gambit. When I was diagnosed 8 years ago my folate, ferritin and b12 were through the floor and the gp said it would mean injections for life. My IFAB came back negative but he said that didn’t make any difference. But now suddenly the practise has been taken over after failing CQC checks countless times and is run by locum gp’s. They are going through all b12 patients and de-diagnosing. I think it’s the negative IFAB that is the decider in this. Thank you for your help.

[Hidden]

Assuming you’ve had a diagnosis of P.A., he doesn’t have a clue what he’s on about. I had a similar argument with my GP a few weeks ago. I’m now on a second loading course, but it took me kicking off and threatening to complain (and also crying) to get it.

[Parksy in reply to Hidden]

I’ve argued until I cried. They just don’t give a damn. My worry is at the moment if they do blood tests my b12 will be in range as I had an injection toon 7 weeks ago. They also want to do IFAB test which I believe can’t be done once you are receiving injections. Well done you though for getting yours sorted.

[Hidden in reply to Parksy]

Keep fighting if you can. It is hard. But as others have advised, definitely put it in writing and state what you want to happen. Good luck! X

[LittleA]

My advice is write a complaint to your practice manager, if the head doctor is telling the wrong information that is a danger to health.

You can also report this to the health ombudsman if nothing is done.

If you don’t get anywhere move gps, it wouldn’t fill me with confidence seeing him or anyone else if the practice for other conditions if the information and treatment is wrong.

Hope this helps x

[Ch3ll33]

Ive had neurological symptons for the last 3 years. However as my b12 levels where above 150, they didn't think it was related to b12. However, in june my levels dropped to 123, so had loading doses and it helped me so much. Then 8 weeks after tbey gradually came back and i felt so ill. So hp did bloods again. Levels at 294 however as my symptons came back and i felt so ill, hes put me in another 6 loading doses and wants me over 500. Just had my 3rd and already feeling an improvment. My gp is thinking about sending me for a scan on my spine and cervial to check i dont have any nerves pinching as he doesnt think its 100% related to b12?

[Twaddletop]

Don’t give up. Just go down the same route as many of us have, SI

[Cherylclaire Forum Support]

GPs waste a lot of time (and NHS money) looking for symptoms to be attached to something else- something they would deem more serious than B12 deficiency - because they cannot believe that a simple vitamin shortage would give you such deterioration.

They are wrong. Untreated B12 deficiency can be fatal: Pernicious Anaemia is an incurable autoimmune condition and functional B12 deficiency is due to irreversible genetic defects.

There are treatable conditions that cause B12 deficiency, and dietary causes - but the right tests have to be requested and the right questions have to be asked in order to rule these in/ out.

It seems your doctor is unsure of the cause of your neurological symptoms, which admittedly could be a separate issue, but since neurological symptoms are clearly listed as symptoms of B12 deficiency (whatever the cause), the logical actions to take would be:

1) - refer you to a neurologist who will be able arrange appropriate tests for you - which will involve quite a wait

2) - meanwhile, maintain your B12 treatment - since it is harmless, has been effective thus far - and the discovered B12 deficiency the most obvious cause of your neurological issues, prior to testing ! (Win, win and win.)

3) - read the guidelines for treatment and testing: NICE, BCSH, etc. to avoid making primary care decisions that are counterproductive to control of your symptoms, which will then need addressing at secondary care level.

Once your level is above the very lowest level in the range, your GP has clinical indication that the treatment is effective..... so stopping it ,without any interest in determining the cause of the initial deficiency, looks like your GP's attempts at using re-deterioration as a diagnostic tool !

Whatever happened to "first do no harm" ?

You have been given the relevant guideline links in Gambit's response . You may need to read these aloud to your "head GP", who has obviously not been doing his homework !

[Dee011960]

Some GP'S are leaving it to their Head Nurse to look at B12 deficiency, most of whom are not aware of the symptoms of PA and believe it's best you have tablets or say that your level is high and that you don't need the injections!!

The sooner B12 injections are declassified to an over the counter (as the tablets are), then the general public can self administer without having to continuously argue with their gp to issue!!

[Flinder]

My B12 was in the low end of the normal range. I have sore throat, tinnitus and hairloss in the last few months. The GP said these things were very normal aging progression or nothing to worry about. He also told me that my hairloss is unlikely to recover. I was very depressed after that appointment.

[Parksy in reply to Flinder]

Well not only was your GP a thoughtless twat but I thought they weren’t werent allowed to use aging as an excuse for things unless they’ve tested for other things. I’m blown away!

[Nackapan in reply to Parksy]

You've alot to rage about as I have had.

Did you sort out your b12 injections?

Hope so

[Parksy in reply to Nackapan]

No I haven’t, but this anger at the stupid doctors we have to deal with gets worse. I’m ready to go the whole way and take them to the cleaners. Trouble is the longer I go without my injection the brain declines and I’ll end up making myself look stupid!!!

[Nackapan]

Have toy tried writing?

Less stressful I've found

Have you thought about DIY whilst getting it sorted ?

[Parksy in reply to Nackapan]

I will write to them I think, now the anger is abating a bit. I will also order some to start after my blood tests next week. There’s no point in me seeing a private consultation as our local hospital consultants also do the private consults!