Clueless

[Caroline50]

Hello all, would really appreciate some advice please. Several years of constant pins and needles in legs, feet and hands, balance / walking problems, very swimmy, mouth ulcers, cognitive fog, visual problems (blurred, ghosting, ocular migraines), RLS, PLM, relentless tinnitus and utterly exhausted.

Serum ferritin 17 (range 15-300)

Serum B12 250 (range 180-900)

Serum folate 5.7 (range >3)

GP very dismissive, "menopausal" but prescribed ferrous sulphate tablets for restless legs, by day 2 of taking these I felt really awake 😀 by day 4 violent chronic diarrhoea, felt like I'd been hardwired into the electricity mains, even my lips were tingling, and horrifically dizzy even when sitting down. GP won't consider B12 as in range. He prescribed ferrous fumarate as substitute but I'm a bit reluctant to take due to potential effect on work and how bad the ferrous sulphate made me feel.

Feel like I'm going round in circles, any advice re levels and / or iron tablets would be appreciated. Wasted 8 years feeling like this, first time asking a forum for advice but reading through many of the posts I think I'll get more sense here than from my GP. Thanks

[Marymary7]

You need B 12 injections, loading doses first. Dear dear ....these GPs it's quite scary. Can you see another one. Did you take any b vitamins prior to bloods being taken...that skews results...makes them look higher, just trying to think how you can go 'low enough ' to get treated! You shouldn't need to but that seems to be the way now. Don't ignore as some damage could be permanent and lead to more problems.

If you look up Pernicious Anemia symptoms you have them all. Other countries have the sense to have 500 as there lowest range figure.

I suspect all your results will be low such as Vitamin D too. Can you buy some gentle Iron tablets by Solgar, that may be tolerable that's what I use as I don't eat meat. Take with or eat vitamin c foods to aid absorption.

Have they checked your thyroid levels too?

More informed folk will give you good advice soon but it looks as if you need a concerted effort to get all your levels up.

[fbirder in reply to Marymary7]

Nobody has 500 as a lower limit. It is a common myth, promulgated mainly by some idiot Facebook groups. Having such a high limit would require treating everybody. Over 80% of normal people have levels over 500.

[Marymary7 in reply to fbirder]

mthfrsupport.com.au/vitamin...

chriskresser.com/b12-defici...

It's not just Facebook and it's not a myth if you read the literature.

[fbirder in reply to Marymary7]

It is a myth. I have read the literature.

There is nothing in the literature that says that Japan have a lower limit of 500 pmol/L apart from one paper that mentions it in the abstract. When you read the full paper, as I have done, you find that there is nothing at all in there that mentions a lower limit for anywhere. Oh - and the Pacholok book, which doesn't give a source.

But you can find plenty of studies that look at the levels of B12 in normal people. Here's one from Japan (which makes it very relevant). jstage.jst.go.jp/article/jn...

They found that the average level of B12 in Japanese college students was 340 pmol/L with a standard deviation (SD) of 50 pmol/L.

In statistics the SD is a measure of the spread of values about an average. 68.2% of the population will fall within 1 SD of the mean. And 15.8% will have a value that is higher than one SD above the mean. Only 2.2% will have a result higher that 2 SDs above the mean.

But 500 is more than three SDs above the mean. Which means that 99.9% of the population will have a value lower than that.

That is what the literature says - when you measure the B12 levels of Japanese college students 99.9% of them will have a value less than 500 pmol/L.

And there are more studies. This is a UK one - cambridge.org/core/services... - where they found a mean of 313 pmol/L with an SD of 136. The larger SD means that a value of 500 pmol/L is over 1 SD above the mean.

I choose to use the UK study (it has a larger subject number). That's why I say that over 80% of people have an B12 level above 500 pmol/L rather than saying over 99%. The 80% is the below the lowest figure I've found in any study (and in that study it should really be higher - actually putting the stats into a computer shows that 90% have a value less that 488 pmol/L).

So the literature actually shows that very, very few people have levels above 500 pmol/L and that the stuff you can find on the web isn't from a literature source - it is all from people quoting from one book.

But, if you do believe in the internet over real scientific literature then it's great news. Because the lower limit for B12 in Europe is 500 to 550 pg/mL - clancymedicalgroup.com/vita...

[Marymary7 in reply to fbirder]

Thanks, fbirder I had a feeling you would put me in my place 😂🤣 I used the wrong description when discussing bottom or lower ranges. I take all your points.

[fbirder]

Iron sulfate normally has the opposite effect - chronic constipation. The fumarate should be better or, as Marymary7 says, iron bisglycinate (Gentle Iron) - which is what I take.

Your symptoms sure sound like they might be due to a B12 deficiency. Print out this NHS document - hey.nhs.uk/wp/wp-content/up... - and post it to your doctor asking to be treated according to that protocol.

You should follow the right-hand path of Figure 1 - for people with 'objective indications' of a deficiency but with intermediate levels of B12. You should be started immediately on a course of injections and given a test for Intrinsic Factor antibodies. If the antibody test is positive or your symptoms improve then you should have the injections for life - with no further testing.

That's assuming your not vegetarian or vegan. If that's the case I'd try taking some B12 pills for three months first.

[pejka62]

250 B12 is very low--I had 211 and had a lot of nerve damage and found a doctor that would give me shots weekly for about 3 months,(self injected) and I lost a lot of nerves that will never come back but am doing much better now. When you get the shot weekly your B12 will go to 1200 or more but keep taking them until you don't have shocks like electric shocks in your legs and etc. The shocks are the damaged nerves waking up again.

[Caroline50]

Thank you all for taking the time to respond, really appreciate your advice. At a bit of a loss re what to do, GP is adamant he "won't waste NHS money on unnecessary injections". He is the senior doctor in the practice so doubt it's worth seeing anyone else there. Will join PAS (office is literally down the road from me) and see if they can recommend a different practice. Thanks again for your time x