doctors reply

I am having a battle with my doctor. I have b12 deficiency and have physical and neurological symptoms. At first i was offered b12 tablets (150mcg a day) but I convinced the Dr to give me loading doses. She prescribed 3 loading doses over 2 weeks of b12 serum. I said no I want the NICE recommendation for neurological problems 'doses on alternate days until symptoms recede'. Here is her reply -

'I am not convinced all of your symptoms are related to the b12 deficiency.

The most appropriate clinical action is to bring forward the repeat blood test after your last b12 injection to assess the serum value of b12 to determine what symptoms are related to b12 and which are not. You are of course welcome to seek a second opinion'

The arrogance is unbelievable. I have had 2nd dose and still have all the symptoms, feeling rough as my body tries to mend and I am frightened how i will feel after the 3rd dose wears off . The doctor just doesn't get it.

Any input would be welcome

Where do I go to get a second opinion?

Note: edited by admin to add addition question originally on a separate post

[Gambit62 Administrator]

You can get a second opinion from any other doctor - this could be another doctor at the same practice, at a different practice, or by going to a specialist.

Your GP is also supposed to use clinical judgement and is not bound to blindly follow guidance but they should be able to tell you why they don't think the standard treatment for B12 deficiency is inappropriate for treating your B12 deficiency. The guidance only distinguishes between neurological and non-neurological involvement in treating B12 deficiency and suggests 3x for 2 weeks as loading treatment in non-neurological involvement and continuation of this for a longer period of time if there is neurological involvement

[Hidden]

Yes so where does she get only 3 loading doses when I have told I have memory problems? Is she making it up?

[pvanderaa in reply to Hidden]

Create a nice long list of all your symptoms and overwhelm her with your evidence. Keep a logbook and score the severity of each symptom daily. You will begin to see your pattern that precedes the injection and then other symptoms that follow the injection.

[Cherylclaire Forum Support]

The problem is that 3 injections alone might cause some alleviation of symptoms, and more likely won't. This will give the GP the "proof" she wants that your symptoms are not B12-related, backed up by a serum blood-test now showing a "normal" level.

I agree that a list of your symptoms would be useful, and a daily record of frequency and severity, but this will need to be supported by a list that a GP would acknowledge as valid for B12 deficiency- so I would suggest in addition, print off a list that has come from a reliable source and tick all your symptoms off on there too.

The other problem is that we are all different. Symptoms , frequency of injections needed, length of time it takes to improve, all this and more.

GPs differ too. Some are aware that if left, some symptoms may never improve. Some realise that pernicious anaemia is an incurable condition that can be stabilised by lifelong B12 injections. Some even understand that there is a condition called functional B12 deficiency. And some just think that this is just a vitamin thing - and assume a couple of shots will sort you out.

Of course there could be any number of alternate reasons for symptoms, which is why they need to be looked at in the round- which is a GP's forte. IF you get the right one.

You could ask to see a series of specialists: neurologist, haematologist, gastroenterologist, but it will still all get reported back to the GP. It is important that you trust your GP to interpret all the results , reports and recommendations in order to treat you properly.

The sooner the better with B12 deficiency: you do not need to eliminate other possibilities first, and there are tests, although some are no longer recommended: read the information in the pinned posts (right-hand column from the top of this page) before asking. MMA levels could be a good 2nd indicator, as they are raised if B12 insufficient, and can remain raised if the amount of B12 given is inadequate. Difficult to get on NHS (expensive and beyond most local hospital labs' capabilities) but not impossible.

You can join the Pernicious Anaemia Society if you haven't already for more specific advice, or use their symptoms list.

[Hidden in reply to Cherylclaire]

thanks for the eply

[onyx33]

In 2014 despite being diagnosed with PA two years previously and receiving the recommended treatment, I began to experience neuro symptoms, falls, altered sensation in feet, extreme tiredness, weakness, tinnitus irritability etc. I was refused the treatment recommended in the BNF for approx 3 months but was finally prescribed one B12 injection every other day which I self administered for approx 6-7 weeks. My Blood test results prior to reporting neuro symptoms confirmed above high reference limit for red blood cell distribution width, mean cell haemoglobin level below low reference limit, total white count above high reference limit, neutrophil count above high reference limit , serum C reactive protein level above high reference limit, inorganic phosphate level above high reference limit. I think some of these test results indicate a problem with B12 can anyone with a better understanding than mine please advise, during this period in the months following I was treated for an iron deficiencey anaemia. My white cell total count remained above the high reference limit following the every other day injections, my red cell distribution width remained above high reference limit and mean cell haemoglobin level remained below low reference limit .