B12 in normal range

[Rkb12]

Hi all,

I have been suffering from a b12 deficiency for 10 years. I have a family history of pernicious anemia and have had chronic gastritis in the past. I had a great gp who intially diagnosed me and was happy to give me my maintenance doses. Unfortunately my doctor stopped practicing and I had to move somewhere else. I have had some symptoms over the last few weeks/months including numbness, dizziness, balance issues ‘the sighs’ and very cold feet and legs. Knowing it was time to go for a top up I went to my new gp, and this is where my bad day started. When I told him about my deficiency he looked at my blood tests taken last summer (8 months ago) and said they were in normal range 220 (<180-600) and all but laughed at me for requesting b12. When I explained my last doctor gave me top up injections when I felt these symptoms popped up he laughed and said maybe that’s why he’s not a doctor anymore. I was so upset, I had never been talked to like that before. My question is could it be possible that symptoms are as a result of b12 even though it is in the normal range? Especially with my history?

Thanks for your help.

[clivealive Forum Support]

Hi Rkb12 this is absolutely tragic that you can be dismissed by a so called doctor.

The British Society for Haematology guidelines 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...

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 B.N.F. guidelines below.

bnf.nice.org.uk/drug/hydrox...

Indications and dose

For HYDROXOCOBALAMIN

Prophylaxis of macrocytic anaemias associated with vitamin B12 deficiency

By intramuscular injection

For Adult

1 mg every 2–3 months.

Pernicious anaemia and other macrocytic anaemias without neurological involvement

By intramuscular injection

For Adult

Initially 1 mg 3 times a week for 2 weeks, then 1 mg every 2–3 months.

Pernicious anaemia and other macrocytic anaemias with neurological involvement

By intramuscular injection

For Adult

Initially 1 mg once daily on alternate days until no further improvement, then 1 mg every 2 months.

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.

I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 46 years.

I wish you well.

[Gambit62 Administrator]

220 8 months ago is potentially deficient when you consider that the test only has an accuracy of 20% - so the actually result could be anywhere between 264 and 178 - so definitely borderline on deficient using normal range.

Also it was also 8 months and things may have changed significantly in that time - particularly if you have an absorption problem so why didn't he retest rather than going on results that are 8 months old.

I am really sorry that you have had such a bad experience. It was extremely unprofessional of the GP to make the remarks he did about your previous GP.

Is he the only GP available or is he part of a practice and possible that you could see another GP at the practice.

Really I think the thing to do is to write to the practice, copying the administrator in and saying that

a) you have been on regular maintenance doses in the past as you had a B12 absorption problem

b) BCSH guidelines followed in the UK (which GP can access through the BNF) state that treatment for a B12 absorption problem list a number of limitations with using serum B12 as a measure of B12 status - and state that evaluation of symptoms should take precedence. They also state that injections are for life and that further testing of serum B12 levels is unnecessary after injections have started.

c) request that treatment be recommenced in line with BCSH and NICE guidelines.

You could also suggest that your GP might find the area of the PAS website specifically aimed at helping medical professionals improve the diagnosis and treatment of PA (and other B12 absorption problems in relation to treatment)

pernicious-anaemia-society....

Unfortunately the guidelines aren't very detailed about the use of serum B12 as a test post loading injections - basically the loading injections can fundamentally change the conditions in which normal range is defined because it introduces a new factor - artificially raised serum B12 levels and people can respond to raised serum B12 levels in a way that means they need much higher serum B12 - off the measurable scale in some cases - post loading injections - doesn't sound as if you are in that class though

[Rkb12]

Thank you both for your replies.

I don’t think I could ever go back to that gp I left feeling so dejected and upset he really was the most arrogant person I had ever come across. But I am going back to my family doctor in my home town, so I will take all of your advise onboard when i visit him.

Thanks again

[JOLLYDOLLY]

Hi,

Totally unprofessional of your new GP in every way. Your level, is on the very low side of normal and to keep it in normal range and at the right level, you need the B12 injections, I have been told it is a life long condition once diagnosed.

I had a similar problem with a new GP many years ago over my thyroid meds. She dramatically reduced my medication which was very detrimental to me and even though I am now on the original dose plus T3, I have been left with a lot of medical problems and conditions that might not have happened had she left well alone.

I would get a second opinion and if possible get another GP as the present one, needs retraining.

Ironically it was my Gyne that referred me to see a Endo because my thyroid was out of kilter and that is when I found out that I had B12 deficiency and pernicious anaemia and previously iron deficiency. Both conditions run in the family. My late date had B12 and pernicious, my late sister was borderline and my brother has just been diagnosed. We don't know if mum was ever checked.

Hope it all gets sorted and you start to feel well again. Keep in touch.

Take care

[pejka62]

My reading on B12 was 211 and I already had muscle wasting and nerve damage to my calf muscles.

[Lindylanka]

I have had exactly the same, but quite a lot faster. Diagnosed in 2013 by doctor who retired not that long after, had pproblems ever since as the keep testing serum levels which are around 250 mark. Haven't had a shot for nearly 3 years and have a good range of active symptoms. Cannot change my doctor right now for other reasons, and have very poor hand coordination and strengthe so self injecting is out. Supplements don't do anything for me. I am at a loss to understand why doctors rubbish the idea the b12 supplementtation is an effective medical treatment and good value when use on the right people. I am also amazed at how even if you present them with the guidelines they treat you and it with contempt as though it would be impossible for a non medical person to comprehwnd a medical peoblem. I wish they would classify it as a nutritional problem and allow B12 to be an otc medicine, then we could go to a nutritionist easily and get these vital shots. As it is they are preventing people living a duller life and in some cases allowing actuall damage to occur.