Eeek...Where do I go from here?.. totally unexpected B12 test result...

[Cybrook]

Well this is my latest news and problem...

I have been suffering from symptoms of B12 deficiency for many years..

I have a family history of Penicious Anaemia showing in females..

Elderly Cousin and only living relative has the B12 injections.

It includes our grandmother who died from it age 62 in 1932 (pre NHS installation)

I have been a vegetarian for over 40 years with a careful diet heavy with leafy

greens.

I have every listed symptom Ive read about apart from mood swings and sleeplessness.

Five weeks ago I blacked out in the street, got up and then blacked out again damaging

my head and face quite badly. Got away with just a few other minor injuries.

Ambulance took me to hospital where over a 13 hour period I was checked, glued up,

and tested.. Blood tests, ECG's, Urine tests, eyes tests, squeeze test, and due to the

visual condition of my head, a head scan. I had to wait for the all clear on the head scan

before they let me go home.

Four days before I was asked over the phone to take a blood test for anemia...I presumed

it was a Practice incentive and they were asking everyone over a certain age and etc.

It had come back as a low reading but not badly low. I was awaiting the process of having

the chemist pick this prescription for me etc.. I had not started taking the Iron Ferris 220 mg.

The GP was not available in the afternoon of the week after that... I did check to see if

any of the GP's had been trying to contact me about the hospital results which I presumed

would be sent on to my GP..especially if anything wrong had been found on the hospital tests.

Because of the difficult system and many patients now, I finally got an appointment with the GP

who requested the anaemia test. Because of the packed appointments now I was only able to get a blood

test 4 days after I saw this GP.

At my appointment he said he had no idea why I blacked out but would like to send me off for a head scan incase it was to do with my brain somehow. I said, "Another one?" Turns out he had no idea that

I had undergone the scan..

I moved on to a list of my symptoms and family history he agreed to test me for B12.

Ferris and Follate...(I had been avidly reading up on this site for a few days)..

I told him my B12 could have been made redundant as I had been on Lansoprazole for

13 years. He shook his said saying it was not true that it would harm my B12 intake..

I convinced him it was not true by asking him to Google it.

I phoned a very busy and sharp Practice receptionist today for my B12 result and was told

it was normal...783..so not even the low end of the scale.... I did not dare

ask for the Blood Count/Ferritin/Folate as she was obviously really busy.

After I took the blood test 3 days ago I immediately started using a B12 patch system and also lingual

delivery B12 tablets (this is my 3rd day using them) I was so certain I had a B12 shortage.

What next... How do I deal with my GP...

Questions...although my reading is that high can I get away with saying, "Yes its there

in my system but obviously I am unable to utilise it for some reason"..

Does anyone else know of another condition that replicates 95% of B12 deficiency?

Can I still be within my rights to ask nicely for my symptoms to be acknowledged and

treated with B12 instead of my reading as stated in the NHS guidelines?

I have an idea he will be negative about this due to the high reading.

Can one black out due to not being able to utilize B12?

All tips, knowledge and help gratefully received.

I'm going to try and get a telephone appointment with him tomorrow morning.

[Laura5]

The symptoms of anaemia can be very similar for both iron deficiency anaemia and B12 deficiency anaemia. You seem to have said that you have had a blood test that came back as you having iron deficiency anaemia - is that correct? If so, that could explain a lot of your symptoms - once your iron has got low enough to cause anaemia, it probably means you've been iron deficient for some time.

There is some research showing that (particularly among women) pernicious anaemia tends to show up as iron deficiency first and then some years later progresses to B12 deficiency.

It is worth going into your surgery and asking the receptionist for a print out of your blood results and then posting them here.

[Cybrook in reply to Laura5]

I will get those printed results, Laura 5... and thank you.

By the way I was iron deficient but the GP said it was not by a large amount.

Thank for the other info Laura...

[Gambit62 Administrator]

There are a number of conditions that can lead to elevated B12 and some people respond to high levels of B12 in serum by producing a protein that stops the B12 getting through to cells - which is called functional B12 deficiency.

This is a link to an article which discusses the possibility of using high levels of B12 as a warning for some conditions but also explains a bit about what functional deficiency is

qjmed.oxfordjournals.org/co...

Unfortunately though it is also true that there is a lot of overlap between the symptoms of B12 and those of other conditions so it could be that there is something else going on entirely.

[Cybrook]

Hi Gambit.. Thank you for replying.... I cannot find what the normal scores are for normal B12... My B12 result came back as normal and not 'elevated' ..... My score of 783 is only the higher end of normal.

I did find this via Google.. It refers to a post in this group a few years ago...Its from Healer69 and is in reply to to a similar question to mine about a higher score still denoting a shortages somehow of B12..

Quote..cut and paste ..

Healer 69

High serum B12 can be caused by a functional B12 deficiency. In that condition, there is enough B12 in the body, but the cells are not able to use it properly, so they export it back to the blood, and it builds up there, bound to haptocorrin. After about a week, the haptocorrin-bound B12 is imported by the liver and recycled via the bile to the gut. This is the salvage and recycle pathway for B12. The cells of the body in general are not able to use this B12. Only the liver can import it. The other transporter of B12 in the blood is transcobalamin, and this is the one that carries B12 from the gut to the cells in general.

High serum B12 per se is not harmful, but it indicates that there is an issue with B12 utilization.

[fbirder in reply to Cybrook]

I don't think that high serum B12 can be caused by a functional B12 deficiency.

But the poster is correct in saying that a functional deficiency is when there's lots of B12 in the blood, but not enough getting into the cells. There are several possibilities for why this might happen. One is that there isn't enough of transcobalamin, the protein that 'escort's B12 across the cell wall.

If you do have a functional deficiency then two tests should show this up - methylmalonic acid (MMA) and homocysteine (hCys). These are two chemical that are used up the two of the reactions mediated by B12. Without the B12 their levels increase. A raised level of one, or both, indicates there's not enough B12 in the cells.

The test should be done while taking any supplements because the aim is to show a functional deficiency while serum B12 is high.

[Cybrook in reply to fbirder]

That seems very clear to me fbirder and I like the easy to understand way its set out...

So, be very clear,.. I continue to take my B supplements keeping the level high up to the blood test?

This seems a good and reasonable next stage to present to my GP and I will certainly request this is done... Thank you very much

I am just going to cut and paste what you have written... check it out and proceed that way.... Im most grateful...

[fbirder in reply to Cybrook]

So, be very clear,.. I continue to take my B supplements keeping the level high up to the blood test?

If you want to show that your symptoms are due to a functional deficiency, then yes.

If you want to show that a 'normal' B12 deficiency is responsible for the symptoms then you need to stop supplementation, to become B12 deficient, before an MMA test.

[Cybrook in reply to fbirder]

Fbrider..I meant to type 'so to be very clear'....and not 'be very clear'..... it does not read as nicely...sorry.... All understood ..anemia is something quite new to me Ive never even read anything about it..let alone B12 issues. lol. Have just purchased another book today.

[Sleepybunny]

Hi,

There are many conditions that have symptoms that overlap with those of B12 deficiency.

This link is to a list of conditions that people with b12 deficiency can be misdiagnosed with. It is not an exhaustive list.

b12deficiency.info/misdiagn...

One condition I read about that has symptoms in common with B12 deficiency is Lyme disease

lymediseaseaction.org.uk/

I am not a medic just a patient who hs struggled to get a diagnosis.

[Cybrook in reply to Sleepybunny]

Thanks for the reply... With each suggested reason for the symptoms I am going to have this chucked at me... "But you are not low in B12 your reading is the high end of normal" They are rooted in this paint by numbers mind set".

Im going to have to print out clearly valid reasons why a high end of normal reading is red herring... lol... Oh the stress... *bites back of hand* ha ha ha.. Any links appreciated...thanks..

[Hidden]

Did you know that you should be able to see your medical records online, so you don't have to bother busy receptionists. Assuming you are in England every practice is part of Patient Online which allows you to order repeat prescriptions, book appts and see your coded information records online. Many practices have done the first two, but not the third, and you need to ask at the practice about it. I can now see my results the day after the test, which allows me to look at other info on normal levels etc.

Doesn't necessarily help with GPs who aren't clued up, but would give you the information more easily, and prepare yourself

[LtAngua52 in reply to Hidden]

My doctors surgery is still in the dark ages as they have not set up any patient online access service!

[Hidden in reply to LtAngua52]

It is in the contracts of English GPs and has been for the past 2 yrs. Do you have a Patient Group, possibly not if they are that far back in the dark ages, but they can discuss things with GPs. You can google Patient Online Programme to get the info, and then ask GP or Practice Manager if they are doing it and if not why not.

[LtAngua52 in reply to Hidden]

The website says that my surgery do have a patient group but are looking for members. I'm considering it! When I went on to the patient access website it states that only 1 in 4 GP surgeries offer the service. Looks like many surgeries are in the dark ages.

[Hidden in reply to LtAngua52]

Interesting. The figures that NHS England have (assuming you are in England) is that well over 90% of practices have the "capability" to provide the service. Most do offer repeat prescriptions and appointments online(though maybe selected appts) and fewer offer records access, but they should be doing it. I am on a national patient group monitoring the roll out.

[LtAngua52 in reply to Hidden]

Maybe I was looking on the wrong site, although I was redirected to it from my GP website. It was patient.info/patient-access if you want to check that. Maybe they haven't updated?

[Hidden in reply to LtAngua52]

Patient Access is one of the systems which is used by GPs. The NHS allows them to choose and there are 4 different ones. If you look on the NHS choices Patient Online website it lists the different ones and Patient Access is one of them, not sure where the 1in 4 comes from. Obviously your practice uses them. Some are further ahead with their systems for online access than others, but they all have to do it.

[Cybrook in reply to LtAngua52]

Bunged in my post code...no practices doing full on line services as yet in my area... Thanks,LtAngua.

[Cybrook in reply to Hidden]

Hi Chris... At my Practice in Wales we can only order our regular prescriptions on line... We certainly cannot book appoints..lol.. The system they have is so complicated..in order to get an appointment with a GP of our choice we have to phone at 1.30pm on Mondays ONLY... no other day..You cannot get appointments at any other time..

This involves remembering in the first place..lol.. then sitting there and dialing, re-dialing ..you can do this for up to 20mins as every other person registered there is also doing the same.. The number does not allow the use the BT 'ringback service' . I will have a little nag to the Practice Manager though..lol.. Thank you so much for your reply.

In order to speak to a doctor we have to ring at 8.30 in the morning only...again you just re-dial and re-dial because everyone else is doing the same......Once get through then a doctor will phone you back at some stage.. I woke up at 8.45 this morning damn it...and by the time I had pee it was too late. If you dont start dialing earlier then the phone appointments just fill up. Now I have to wait until after the Bank Holiday to speak to my GP knowing I will be competing with hundreds of others in the race. The surgery does not have an email address shown for patients use.

[Hidden in reply to Cybrook]

The Patient Online Programme is a programme run by NHS England. But looking on the internet Wales seems to have something called Myhealth online, which suggests that you ought to be able to book appointments online aswell as prescriptions, but doesn't mention access to records. The difference between parts of the UK is amazing. Does your practice have patients group. A lot of patients groups spend time discussing the appointments systems. Yours sounds incredibly patient unfriendly

I am on a national group as a patient monitoring the English programme and we have found many practices are very slow at working out how best to run appointments online and only put a few routine appts on, others have them all on.

Sorry this isn't very helpful for you in Wales but may be worth pushing it at your practice.If you know others who are at the same practice, that might be helpful.

[Cybrook in reply to Hidden]

Cheers Chris for the further info... Once this Referendum, which is taking up all my time right, is over I can start to tackle the surgery via a patients group...

Umm..just checked their web site and they do NOT have a Patients Group..no surprise really.... The web site is quite sparse really.. if you look further its just padded out with reference areas for service to the web site designers and their pledges which would only be of benefit to the acting Practice Manager... lol..

Its interesting to see the comparison to other Practices in UK. Thank you.

[MariLiz]

Have you had your thyroid function tested? Underactive thyroid and low B12 have similar symptoms.

[Cybrook in reply to MariLiz]

Hi MariLiz... That is going to be tricky as my test result is showing higher up in normal scale...I know the GP's will think I am talking Voodoo...lol

[Cybrook in reply to Cybrook]

MrariLiz.....Sorry, I pressed to send too early my mistake.. I did have one many years ago..same story..normal... had I been in the States I would not have been in the normal scale. I will ask as someone on here said that the UK test levels have now changed..

I will need to blind my GP's with science to get a thyroid test I think.. Thanks for your reply.