What is the optimal result for Active B12 in order to feel healthy - are the ranges a poor as they are for normal serum B12?

[melodypond]

[Hidden]

Hi melodypond.

I have no idea of the answer to your question! I think there is a "grey area" for active B12, and if you fall within this area they would then do the MMA or homocysteine test to establish any deficiency. As far as I'm aware, once you start B12 treatment the best marker for ongoing health is your symptoms, no lab range can replicate that.

Weren't you having a raft of tests done? How did it go?

Hampster

[melodypond in reply to Hidden]

Hi

Thanks for replying, it is appreciated.

Yes I was, but guess what? all normal (so to speak). My B12 has actually gone up slightly , probably as I was taking a good multivitamin (though I did stop a couple of weeks before I had the test), Parietal antibodies normal (so the IF wasn't done), Thyroid normal (though like B12 the ranges are rubbish!) and LFT's not bad though bilirubin at the very top and Gamma GT raised. My serum folate is not as elevated as last lot of tests but it was right at the top 19 (range <19) - everything I read about elevated folate says B12 deficiency plus I have every symptom going!

I ordered the active B12 home test (hence the reason for my question) and it came back at 75 (25-165) so doesn't look like a problem with malabsorbing the B12 - may be there is a breakdown in the pathway somewhere but I am afraid that is where it all gets a bit confusing for me! Be interesting to know what the grey area is though if you/anyone else knows??

I was going to go back to my nurse practitioner but I had a phone consultation with the GP (because of the elevated gamma gt) and explained why I had had the tests, he was so dismissive, it made me so angry! I said in other countries I would be treated for B12 deficiency as my levels are under 500 and his response? 'If we treated everyone under 500 we would be treating nearly everyone'!! Arrrrgh. Yes and you would have less dementia, less heart problems, less fibro (and all kinds of treatment there - I know I am one of those people). I said I have nearly every symptom listed! But he basically cut the phone call off. It upset me so much and I am suffering all the while that today I started self medicating with the sublingual supplements. I couldn't face going back and asking for the MMA or the homocysteine. Though after I took the supplement I wished I hadn't and had gone back for the tests but would I have affected them now after one dose?

And actually does it make any difference to me really if they do come back abnormal ?? Apart from the fact it might prove I am not a hypochondriac and that it isn't all in my head? Shall I just give up on the doctors and treat myself before I get worse? I already have neuro symptoms and signs of nerve damage (burning shins and hair loss on lower legs) plus a heart murmur - don't think I should waste any more time. It is all so confusing.

Sorry for long response - just makes me soooooo angry!! My nurse practitioner was lovely and said to me 'you know yourself when something is wrong' and ran the tests I asked for but now I just feel stupid again because they are all 'normal'. Makes me want to re-train as a GP and take on the B12 world!

MPx

[suki65 in reply to melodypond]

hi this is excellent i have never been ill until i was told i had to take statins for the rest of my life in 2011 after my cholesterol was 12.1 hey but guess what after switching from one statin to another trying to find one that didnt nearly put me in a wheelchair hey presto i have done everything on my own ,i take b12 supplements to get my arms working again ,opti omega 3 capsules ,to keep my levels down ,vitamin d with calcium as the statins brought my vitamin d low and i am nearly 100% fit after about 3 months of statin free and falling out with the specialist who wont have it that statins do more harm than good to some people( could it be b12 a brilliant book )

[Erainy]

"I said in other countries I would be treated for B12 deficiency as my levels are under 500 and his response? 'If we treated everyone under 500 we would be treating nearly everyone'!! Arrrrgh. Yes and you would have less dementia, less heart problems, less fibro (and all kinds of treatment there - I know I am one of those people)."

I hear your frustration but this is common reaction reported by many B12 deficient patients. You need to realise, GPs are not interested in getting you healthy. If they did, so many of us would be given an opportunity to have B12 level & MMA tested, including IF/Parietal antibody tests and referred to haematology consultant etc. And they should give B12 injection according to what's in BNF but they don't, you see what I mean? Every stage is a struggle and we simply want to get better so that we can get on with life rather than bedridden. If patients are prescribed with anti-depressant, for example, it will benefit pharmaceutical companies while simple and cheap vitamin B12 will cure many of our symptoms and we could get off anti-depressant, painkillers and what have you. Pharmaceutical companies don't want us to be healthy and that's why they are depriving us from higher dose vitamin supplements. Do you see how this is all working together?

[Hidden]

Oh Melodypond, I am so sorry you are experiencing this, but I think you're right there are clues in your bloodwork, if only your doctor would look properly.

Firstly re the active B12 test, read this:

biolab.co.uk/docs/vitaminB1...

The grey area is 25-50 so you are above this, but not by much. And the supplement that you had been taking may well have affected the result - do you know how much B12 was in the supplement?

Also I think you're right about possibly having a problem somewhere else in the methylation process. This side of things is all really above my head but I can give you a couple of links. The first is about the so called "methyl trap":

ncbi.nlm.nih.gov/pmc/articl...

The original blood tests you posted had an elevated serum folate, but your red cell folate was closer to the bottom end of the range, so this could be happening with you?

This forum goes into a lot of detail and is probably worth having a look around. Start with this post, if you bear with it it gives a suggested supplement programme:

forums.phoenixrising.me/ind...

And this link shows another self supplement programme (nostoneunturned):

pasoc.healthunlocked.com/bl...

Have you considered joining the PAS and posting on their forum? They have so much experience over there at interpreting blood tests, and some of them have had genetic testing done to try and work out where things are going wrong.

Really everyone is different, and it's almost trial and error to find out what will work best for you. Only you know how you feel, never feel "stupid" for trying to get some answers and make yourself well.

I still think your iron/ferritin levels are not optimal. Are you taking anything to get this up? May I ask what your thyroid result was?

Hamspter x

[melodypond in reply to Hidden]

Hi Hampster

Can't sleep so thought I would reply to your post.

Thanks so much for all the info/advice and links. It all makes for very interesting reading. I have decided that if my problem isn't straightforward (ie it's somewhere along the pathway) then I have no hope of my GP sussing it out! I am going to self supplement and from the links it has given me a really good insight into what I may need to do. I had read a lot about the 'honeymoon' period when people supplement only to be followed by feeling terrible and crashing. Hopefully the tips on this forum will help me avoid that.

Before I was taking an oral multi-vit which had 75ug of B12 (cyancolbomin - don't think I spelt that right!)

Now (past two days) I am taking sublingual superior methyl B12 3000mcg.

My thyroid levels are below . Thanks again for all your help and for taking the time to try to help me - thank goodness for people and forums like this! MP x

Dec

Serum Free T4 level was 13.3pmol/l (7.0-17.0)

Serum TSH 1.53 mu/L (0.40-4.50)

Total thyroxine(T4) 118 nmol/L 59-154

April (private test)

TSH 2.50 mIU/l 2.50 mIU/L 0.27-4.2

Free Thyroxine 15.5 pmol/L 12.0 - 22.0

Free T3 4.8 pmol/L 3.1 - 6.8

Total thyroxine(T4) 118 nmol/L 59-154

Thyroglobulin Antibody 16.9 IU/mL 0-115(negative)

Thyroid Peroxidase Antibodies 9.1 IU/mL <34 (negative)

May

serum T4 11 (7-17)

serum TSH 1.7 (0.4-4.50)

[Hidden in reply to melodypond]

Hi MP,

You look like you're tending towards hypo to me, your last T4 reading is only 11. Although I'm hyper, mine got to 9 at one point due to overmedication and I was a basket case! The mixture of low B12 and low thyroid function gives a double wammy imo. Unfortunately doctors only care about the TSH which is why so many people are kept ill needlessly. I would strongly recommend posting your thyroid results, as you have done above, on the healthunlocked thyroid uk support forum. There are some really knowledgeable people over there that can advise you, as I think you're going to need to find a doctor who would be willing to trial some thyroxine.

p.s. The B12 in your supplement was probably too low to make a difference, and also cyano has to be converted by your body a few times to be usable.

H x

[melodypond in reply to Hidden]

Thanks Hampster

I have been veering between whether I am hypo or it's the B12 but appreciate they are interlinked and often people have both. Have posted over on the thyroid forum as you suggest and will see what they say there. Just finding it difficult now to go back to the doctors - and the thyroid is so complicated!

Have carried on taking the B12 and will do so as I know it can do any harm (and may help if it is my thyroid!) - today I managed to iron all the school uniforms in one go - haven't been able to do that since before Christmas though of course it could be a coincidence! Will keep on monitoring myself. Thanks for all your help.

MPx

[Hidden]

Hi pettals, this explains the antibody tests for B12 deficiency:

- Intrinsic Factor Blocking Antibody. A protein that prevents B12 from binding to intrinsic factor. It is present in more than 50 percent of all patients with pernicious anaemia.

- Parietal Cell Antibody. An antibody against the parietal cells that produce intrinsic factor. Present in nearly all cases of pernicious anaemia but may also be seen in other disorders.

If you're positive for IF antibodies then this is diagnostic for PA. However, if you're negative, it doesn't mean you haven't got PA because only 50% test positive!

Parietal cell antibodies are much more commonly positive in PA, something like 90% of sufferers have them. However, it can be positive in other disorders (like thyroid disease) so is not considered to be diagnostic of PA.

So, not confusing at all!!! If it helps, in my case I am strongly positive for TPOab (thyroid antibodies) and parietal cell antibodies, but negative for IF antibodies. I have Graves disease and a B12 deficiency.

[Hidden]

Well my B12 was "OK" as well, but we all know it's not as simple as that. My Endo did the antibody tests for me, as well as the MMA test which was elevated (I never had the active B12 done). But I do see him privately and asked for them myself (and obviously my insurance paid). It's difficult to advise without knowing your story, you can PM me if you like, or post a new question with your blood tests and symptoms listed.

[johnbarriesmith]

I can only give my exprience , I have auto immune legacy from G/M insulin , Drs were in denial , dentist referred me to Maxillio-Facial where my B-12 reading was 26.0 .

I have to keep it at 1000 to be comfortable with weekly injections of 0.3 ml , have to buy my own because the hydrocobalmin doesnt last , a nurse explained I was metabalising it .

[Mandiejj]

I have Parietal cell Antibodies, ANA 1/80 mono pattern, folate 2.7 and B12 278. 10 week ago my b12 was 366 so fair drop, but folate has increased from 2.

Dr has still said nothing to worry over even though I've been feeling I'll for a good year. I'm under gastro and signed off from rumi, . Saw rumitologist for constant headaches, they put me on 80 mg day propranolol to stop the headaches but had them stopped as BP dropped to 45/117.

Other Dr have said I'll prob have Pernicious Anaemia in few years, so seeing these level drop so fast why do they wait?

[Schenks]

I am 'replying' to this in order to mark it so that I can find it in my 'conversations'.