My first posting here and I'll try to be as brief as poss. Had a Medichecks thyroid + 11 test which showed low B12 and vitD. My GP did own test that says my B12 is within range, but also that I have macrocytosis (plus some other liver problem that could be caused by low vitD).
The suggestion is that I take pills of 1000 mg B12 for 3 months and see if my blood cells decrease in size. I would like to know what B12 supplements are the best to take. I've read here and elsewhere sublinguial is more efficient so hoping for some advice. Thank you j x
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jib70
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to be honest the difference between absorption of high dose oral and sublingual seems to be pretty minimal.
If you have an absorption problem then possible that high dose oral may help - but it doesn't work for everyone - there are lots of products there - and lots of hype about it needing to be methyl but no solid evidence to support that.
I use a company called detoxpeople for my supplements, others use jarrow and other products from amazon or others.
If you are based in the UK then your GP really ought to be following the NICE and BCSH guidelines in relation to cobalamin and folate deficiencies rather than introducing a protocol that may cause diagnostic problems further down the line.
That basically means evaluating your symptoms and looking at those rather than drawing conclusions based on serum B12 levels. 25% of people who have B12 deficiency present with results in the normal range.
If you have had previous B12 tests and the latest results are significantly lower (20%+) that would imply a developing absorption problem and it would be better to start treating that properly rather than skirting round the issue.
I am in the UK and thank you for replying. My folate with Medichecks was 27.20 = (range 8.83-60.8), but I don't have the more recent NHS results sorry.
GP did say that B12 was difficult to measure by bloods but as NHS results are within range taking a supplement for 3 months and then retesting might prove/disprove problems.
I only want to help myself as best I can as I feel dreadful and I know I'm not functioning properly. Frankly feel that trying a high B12 supplement for 3 months just to see if it helps when I really need help now after just getting worse and worse makes me want to weep - sorry. So I'm asking for the most effective supplement to take as I will try anything to improve. j x
In that case I would go for a much lower dose supplement - suggesting 1000mcg is a dose that really can just make getting a diagnosis much more complicated. If you don't have an absorption problem then taking a dose much closer to RDA - eg a supermarket supplement would really be the way to go as taking a dose that high is actually looking at by passing the normal way your body absorbs B12 so combining that with a serum B12 test which can be useful if you observe a drop in B12 levels isn't actually the most sensible science.
I assume you have thyroid problems - which can also affect absorption of other vitamins and minerals - and the overlap of symptoms makes life much more difficult.
I realise that you are probably feeling pretty awful and on the one level finding a solution is the top priority and its very much being caught between a rock and a hard place.
There are a couple of tests that can help clarify if there is a deficiency at the cell level - which are MMA and homocysteine, both of which should be raised if your cells don't have the amounts of B12 they need to run the processes that recycle them into useful building blocks. They are more expensive than serum B12 - but you can' get them done privately. Getting them on the NHS would mean referral to a hospital. St Thomas's in London does the tests - not sure if they are available through medichecks but they may be. If you talk to your GP he might be open to using one of these tests or looking at the results of the tests if you are paying for them yourself.
On the most effective - there isn't a simple answer. People vary a lot in how they respond to different types of B12 and different delivery methods and there is absolutely no way of knowing which form/delivery method will suit you. You may respond well to sublinguals or they may do nothing for you. You may respond well to methyl or you may respond badly or not at all.
Sorry if I seem to be being difficult but I'm just giving you the facts.
It may also be worth sharing this article on thyrgastric syndrome with your GP - talks about the cross over between thyroid and B12 absorption problems - and particularly auto-immune disorders that lead to both
To be perfectly honest I think your GP is sitting on the fence and dithering instead of taking prompt action as recommended in the guidelines - particularly if you have any neurological problems, eg are you experiencing any problems with numbness and pins and needles?
However, that is a personal opinion - I'm not medically qualified but I do suffer from and have read a lot about PA/B12 absorption problems and hashimotos thyroidosis.
I sometimes think that you are aren't qualified because you have greater knowledge than anyone and to test all you know, you would have to write your own exam papers!! 😁
Thank for being so helpful in explaining things Gambit62. I read the whole link you posted and shall copy it too. I agree with your comments about GP sitting on the fence though which is why I'm trying to do what I can for myself - and yes I think I am having neurological problems as I am getting tremors, tingling and many other things. Thank you for taking the time, I really appreciate it.
Although things like milk do contain B12, it’s not a lot. If you eat a 2-egg cheese omelette and wash it down with a glass of milk every day, that will give you just about enough.
So I would give the low dose (1000 mcg) tablets a trial.
Thank you, I do make 3 egg cheese omelettes with loads of veg in them too - delicious!
Just collected Cyanovit 1000 mg tablets from GP and will take them, but I believe I have a malabsorption problem so thought sublingual might be better. I will have to wait and see if these pills do the job.
If you think PA is a possibility, may be worth joining and talking to PAS. They can offer support and info to people seeking diagnosis and correct treatment.
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies.
"Just collected Cyanovit 1000 mg tablets from GP "
I'm curious about this.
I didn't think that GPs gave out 1000mg cyanocobalamin tablets. I know they can prescribe low strength cyanocobalamin tablets (50 mcg?) for dietary B12 deficiency but for other causes of B12 deficiency and even dietary B12 deficiency where there are neuro symptoms, guidelines recommend injections.
1) Recommended UK B12 treatment for non-dietary B12 deficiency without neuro symptoms....
6 B12 jabs over 2 weeks followed by a jab every 3 months
2) Recommended UK B12 treatment for B12 deficiency WITH neuro symptoms....
A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months.
In BSH guidelines, my understanding is that second treatment pattern applies to any cause of B12 deficiency, even diet, where neuro symptoms are present.
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How does it feel to have too much B12?
seeing neurologist, advice on b12 injections welcomed…
