Folate and B12 levels

[bowler]

Last year my B12 was 226, but with treatment [ sublinguals ] it went up to 2000.

Since then I have been rather complacent and have only been taking them sometimes, or when I think about them as I was feeling fine, however I recently have been having.....tingling in the feet,arms, hands and head, I'm really tired, and have palpitations.

I requested a blood test and collected the result today

B12 is 827 [ 197-866 ]

folate is 19 [ 4.6 - 18.7 ]

These results are within range, and was told no further action/treatment required.

Perhaps I should go back to taking the sublingual at 5mgs per day ?

[Gambit62 Administrator]

Your original reading was on the low side of normal range and indicative that you have an absorption problem. Given that you have supplemented this is probably what has made your whole serum B12 look as if it is in normal range.

There are different forms of B12 - it sounds as if you are probably using methylcobalamin which is good. However, all of the artificial forms of B12 used to supplement need further processing by the body once you have succeeded in getting them into your body. So the test results are picking up that you have high levels of methylcobalamin from the supplementation but aren't looking at the levels of the form of B12 that are used at the cellular level ...

to cut a long story short, there isn't a test that can actually ascertain whether you are B12 deficient - just tests that can indicate that you may be deficient, and supplementing makes the main test rather inaccurate.

To cut a long story even shorter - yes, go back to using the sublinguals regularly.

I use a nasal spray to supplement between maintenance shots - and seem to need about 3mg a day or my symptoms start to return. This seems to be what my body needs in order to ensure that I have enough 'active' B12 to maintain all the functions that B12 helps maintain.

Different people work in different ways, but whatever dose you need that really needs to be taken regularly.

[bowler in reply to Gambit62]

Thank you or your promp reply. I really should have taken my sublinguals [ Methylcolbalamin ] regularly, and especially as I have stage 3 kidney disease which can cause anaemia.

I have had so many health issues recently with Gall stones, irritable bowel, diverticular desease [ which could affect B12 absorbtion ???] and recently had a biopsy on my face re "Bowens desease" so waiting for the result of that, I also have Giant Cell Arteritis. Sorry didn't mean to go on, feeling a bit sorry for myself.

[Gambit62 Administrator in reply to bowler]

If you have a B12 Deficiency then you are entitled to feel sorry for yourself :).

Its a bit chicken and egg with gut problems - ie the IBS and diverticular could have been early signs of the B12D but will also exacerbate absorption problems. As B12 plays a key role in cell reproduction it may be playing a part in the Bowens and Giant Cell Arteritis.

In one sense it is a bit of a pity that you have started to supplement so that will affect blood results as it might have been useful to look at what was happening with MMA and homocysteine - two chemical nasties that build up in your system when it doesn't have enough B12 and hence, used with B12 can be a better guide as to whether a deficiency exists ... though really the only way to go is to look at the symptoms.

Its so hard to find out what B12D really means and it varies so much from person to person in the way it manifests itself ... and often GPs seem totally unaware of just how wide-ranging the symptoms are.

Don't know if you have read up on things but couple of good books are 'Could it be B12?', and 'Pernicious Anaemia: the forgotten disease'.

[Poppet11 in reply to Gambit62]

Just reading through your very good post, Gambit and it strikes me once again as to how many 'recognised illnesses' could actually be as a result of b12 deficiency.

As you say the presentation is so diverse it is difficult to know where to start.

Someone asked me the other week what it causes. I think I stopped at low mood. I just realised I would sound ridiculous if I launched into a long list.

I'm still of the inclincation that sinus problems are part of it as well.

[Leanneta in reply to Poppet11]

I believe sinus problems are as well. Right at start of year when started feeling unwell I felt unbalanced dizzy stuffy nose. On a referral to ENT they said had inflamed membrames he said this was causing sinus probs think the name he give was rhinitis. I now have to take a steroid nasal spray which never does much as like u believe it's b12 related

[Poppet11 in reply to Leanneta]

I think I read the other week when you mentioned inflamed membranes. I went 7 years with sinus problems that no one picked up on. They kept telling me my headaches were due to my stressful job!

By the time everyone had finished brushing me off and I finally got to see a consultant, my sinuses were so impacted I got a rush op within a few weeks of the appointment. If they impact enough they it affects your breathing terribly.

I then went another relatively trouble free 10 years (I was told the op usually lasts about 10 years) - if I started to get trouble only ibuprofen would shift it. And then it started to come back. The week before I got b12, on top of everything else, I could hardly move my head because of the pain.

The day I took b12 within 3 hours the pain in one side of my head only was lifting. I couldn't believe it. The next morning all the pain was gone.

I've never had anything as spectacular as that since but then I was, literally on my knees due to lack of b12.

There is, definitely, a link. One thing I have got previous experience of is sinuses getting so bad you get a rush op. And x-rays with a head full of phlegm are in no one's imagination.

[Leanneta in reply to Poppet11]

Totally agree when I got b12 my head felt the clearest its been in a long time. Why oh why can't these doctors see these links

[Poppet11 in reply to Leanneta]

Because they think b12 deficiency is a blood condition, that other symptoms follow the blood condition, so once they have rectified it all other remaining symptoms are down to something else or all in the mind.

It really is as simple as that.

That's it.

You can't really believe it, can you?

Because I can't!

[Leanneta in reply to Poppet11]

I can't lol. U would think they would start listening to patients after all it would be less cost in the long run to the nhs

[Poppet11 in reply to Leanneta]

In all honesty, I don't think we ever had a hope in Hell of talking them round or convincing them of anything.

What we, as patients, were basically telling them was that all their training was wrong. They had got it all back to front.

Were they really ever to go listen to us?

It's only when their peers start telling them they have it wrong, that they are starting to change.

[Leanneta in reply to Poppet11]

That's the trouble, I don't know how many times I been in doctors and said no 236 is still low etc look at guidelines and they just looked at me. They don't like someone who trying to tell them something they. Don't lkow

[Leanneta in reply to Poppet11]

That's the trouble, I don't know how many times I been in doctors and said no 236 is still low etc look at guidelines and they just looked at me. They don't like someone who trying to tell them something they. Don't lkow

[bowler in reply to Gambit62]

I have had so many problems that I get fed up with going to the surgery, so I just started to suppliment myself again. Also I had the same GP for 28 years who retired last year and since then our surgery has gone a bit pear shaped and I never see the same Dr. if I can get an appointment !!!

Most don't seem to have much knowledge of PA It's a case of "if your bloods are within range your ok"

I was lucky last year, as before my old Dr. retired she treated me straight away even though I was supposed to be within range [ 226 ]

I had a CT scan last week re my gall stone as the Dr. wanted to look at the pancreas and liver, I also had to submit a faecal sample to test for malabsorption. so I await that result.

Yes have read the 2 books you suggested, both very informative, I think I will leave them at my surgery !!!!!!!!!

[offpat]

I've been reading much that supports the notion my wife FEELS to be true - i.e. the literal mechanistic readings ("the normal range") are only a loose guide as to what you are actually absorbing - hence with PA the massive campaign to get B12 injections back to once a month - as they were in the 1970s- 80s

What is available fort you to use is not what the figures tell you - so it may well be that you need a much higher level, and if sublingual is working - lucky you - it doesn't seem to get much improvement in energy levels for my wife once the injection is over 5 weeks gone by,...

[Poppet11 in reply to offpat]

I hate to mention this but the PAS are going to be involved in disseminating guidelines which still promote as standard maintenance treatment three monthly jabs.

We have just waited nearly 3 years for guidelines which are only minimally better in diagnostics and, in some respects, worse for treatment.

Scotland, who have been brooding over the problems for the same amount of time, aren't going to do diddly yet - if ever by the sounds of it.

I'd have been dead if I hadn't self medicated. So would many others. We don't know how many have died during this period. You'll excuse me if I don't celebrate the raising awareness situation and yet another period of 'waiting.'

[offpat in reply to Poppet11]

yup , agreed Poppet, - it is ridiculous - and I am in no mood to wait either - today I have heard of a GP who agrees with us, and will offer private prescriptions for the "proper stuff", so I am now going to get my wife along to him since, as you say - this is life we are are talking about - not a bloody dose of flu...