Newbie needing some advice.

[jackery]

Hi,

I have been lurking for a little while and can't believe how much I have learnt, but still need to learn more and need some help in understanding my most recent blood tests.

I am a female living in the UK. i was diagnosed several years ago as being B12 deficient by a General Consultant in hospital for neurological symptoms. He advised loading doses and injections every 6 weeks for life. This was subsequently changed to every 3 months by the nurse at my GP centre. Since then I have gotten worse and now need a wheelchair daily which the GP prescribed but because I thankfully didn't test positive for the what he described as 'the more serious' neurological conditions. I have been told to that this is just my life now and to get on with it.

Thanks to all the posts on here I went back to my GP and asked for more help so this week I had more blood tests.

My B12 was way too high but I had just had an injection and my Folate was okay but I am prescribed 5mg weekly.

The following are the results I don't understand:-

Haemoglobin concentration 174g/L [115-165]

Red blood cell count 5.85 10*12/L [3.8 - 5.8]

Haematocrit 0.52 [0.36 - 0.47]

Blood Film Report (Whole Blood)

Blood film microscopy packed film. occasional large platelets. no blasts or other

significant abnormalities. please look for secondary causes includin

g

smoking and hypoxia. if no cuase found and persistent refer to

haematology

Serum vitamin D level 32 nmol/L [50.0 - 100.0] i always test low for this but supplements don't seem to help.

Saturation of iron binding capacity 10 % [15.0 - 50.0]

Serum creatinine level 49 umol/L [53.0 - 100.0]

Thank you for taking the time to read this post and sorry about the length. The GP wants to do a re-test and his comments say abnormal but to be expected?????

Sending good wishes to all you wonderful people.

[Curlygal]

You have polycythemia ( I think, not a doctor!) I would Google "secondary polycythemia" which is what you most likely have. There is a rare blood cancer called polycythemia vera as well. I have had polycythemia but it seems to have been caused by medication. Do you smoke, as that can be a cause?

[clivealive Forum Support]

Hi jackery

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...

In other words your doctor should continue treating your symptoms with "injections every 6 weeks for life" regardless of the test result which as Hidden say is neither necessary or useful.

I too am not a medically trained person but I've had Pernicious Anemia (a form of B12 deficiency) for more than 46 years.

I wish you well.

[Gambit62 Administrator]

if your B12 deficiency was identified as a result of neurological investigations then your treatment should conform to the standards for B12 deficiency with neurological involvement which would be maintenance doses every 2 months - so putting you on to 3 months was not correct. However, it's unlikely that that is going to be frequently enough from what you are saying.

I doubt your B12 was 'too high' as it isn't toxic but it may well have been off the top of the measurable range - which is just to do with the limitations of the kit/test method so if you get any pressure to stop or reduce frequency any further, fight back!

How do you take your vit D supplements - if you have PA then general absorption is likely to be lower so you would need higher does - but vitamin D is also fat soluble, I think, so you need to take it with something that is going to help it to be absorbed.

[jackery]

Thank you for your replies.

Beginner 1

I am a night owl too. I always have been. I was mad when the nurse changed them but on consulting the GP he agreed that this was the correct dose. The problem I also had was the consultant had sent me straight to the surgery with a hand written note which I gave to a lady GP who started me off with the correct dosage. She then left and there was no evidence of the letter. Sorry about your GP, but this indifference seems inherent in our system.

Clivealive

I realise now that I was very naive about this subject when first diagnosed and felt sure that the doctors were always right. I presumed wrongly the a vitamin deficiency was not something I should be overly concerned about! I know now that I was a muppet and my health is also my responsibility.

I thought that PA was a more severe version of iron anaemia [duh] so when my first test came back with a level 80 [200-800] I didn't question why this was even though I have always eaten plenty of meat and dairy. Is it too late now to find the source of the problem as I have been on injections for several years now?

Curlygal

I used to smoke but have not done so for several years though I could really do with one after some of my medical appointments. Is there a good site to google as I often find that different sites often contradict each other?

Gambit62

You are correct my B12 wasn't 'too high' It was higher than the range at 2000 as I had an injection the day before.

I take 2,500iu but not with food so I will do that from now on and will fight for everything I can.

Thanks again for all your responses