Mums bloods

[Pixielula]

Hi guys just got a copy of my mums bloods

Serum folate 13.3ug/l. (4.6 - 18.7)

Serum vitamin B12 233ng/l. (>180.0)

Do these look ok? I am quite worried that she is b12 deficient as she exhibits lots of the symptoms advice would be welcome

[Sleepybunny]

It is possible to have severe B12 deficiency with b12 results within the normal range.

UK documents make it clear that symptomatic patients should be treated. Several are mentioned on this page.

b12deficiency.info/what-to-...

I found the following useful.

ukneqas-haematinics.org.uk/...

bmj.com/content/349/bmj.g5226

Google "BCSH Cobalamin and Folate Guidelines" Page 29 is a diagnosis and treatment flowchart.

Do you have a ferritin result? Iron, folate and B12 all work together .

[Pixielula in reply to Sleepybunny]

So are her results "normal" ? she is seventy two, hypothyroid and diabetic, my dad is going to get her other blood results tomorrow but mums GP was reluctant to hand them over, what worries me is she has deteriorated quite badly over the last few years, is now very unsteady, falls over her own feet, always tired has extreme lethargy confusion memory problems anxiety paranoia, my sisters and I were convinced she had some form of dementia she has twitchy legs nerve pains the list goes on.

[Gambit62 Administrator]

How old is your mother - generally the levels for older people need to be higher.

BCSH guidelines mentioned by sleepybunny can be found here

bcshguidelines.com/document...

it's worth looking at the summary recommendations p2 and also at the treatment protocols on p8

If neurological symptoms are present then these should take precedence over the actual test results.

It can be really difficult to get GPs to recognise diagnosing a B12 deficiency means looking at symptoms and not just at test results.

On the other hand it is also true that the symptoms of B12D overlap with a number of other conditions which can make things very difficult,

Even if you can't get the GP to treat on the basis of what is happening at the moment it may be worth getting things retested in a month or so - if there is a drop then its possible that they might be prepared to treat even if it is still 'just in range' - that's what happened with my mother ...

[Sleepybunny]

Her results appear to be within normal range according to the reference ranges you have included next to results.

What I should have said in my post above is "UK documents make it clear that symptomatic patients should be treated even if their results are within normal range."

Untreated or inadequately treated B12 deficiency can result in permanent neurological damage.

The BMJ article I gave a link to in post above has a list of summary points. I found the 5th bullet point helpful.

In the past I have checked my symptoms against these lists below, before I started taking B12 I could tick most of the ones on the PAS Checklist.

pernicious-anaemia-society....

Symtpoms checklist in here.

b12deficiency.info/

b12d.org/admin/healthcheck/...

gives an indication of the likelihood of B12 deficiency

[Gambit62 Administrator]

If your mother is 72 then there is a very strong chance that she is suffering from B12 deficiency - the incidence gets higher as you get older - I don't remember the exact figures but I think it is something like 30% by the time you get to 75.

Ideally treatment for older patients should be started at much higher points than the bottom of the normal range - probably around 250 regardless of whether there are symptoms - but not sure that the guidelines or the lab results actually reflect that.

The diabetes and thyroid don't help because of the overlap of symptoms with B12D so she may have been deficient for quite a while and nobody picked up the signs because they fitted into other conditions - eg diabetic neuropathy - and they may still be reluctant to consider that they are symptoms of a B12D even now.

Unfortunately GPs aren't as aware of B12 as they should be - things are a bit better and at least the link to apparent dementia is now acknowledged so that B12 is a part of the blood screening for dementia these days - or should be. However, there is a tendency still to focus on whether some form of anaemia is present and that frequently isn't the case.

It certainly sounds as if your mother could be deficient. If you really can't get the GP to listen - particularly given the small window on reversing the damage in the brain that results from a B12D and leads to dementia like symptoms (about 6 months) I'd suggest getting hold of some high dose sublinguals or a nasal spray and trying your mother on that. It is only injectable B12 that is restricted to prescription and that is only because it is injectable. B12 isn't something you can overdose on though given the other conditions I would let the GP know what you are doing - her folate is okay at the moment but could drop ... and if she does have anaemia her potassium levels can also drop.

You may find that going for methyl/adenosyl cobalamin rather than cyano/hydroxo could have the most benefit - some studies have shown that that combination can help with diabetic neuropathy in some patients ...

[Pixielula in reply to Gambit62]

That is so helpful, she does have anaemia it is the one with the large red blood cells "mesoblastic" I think? I will write to her GP and see if I she can trial the b12 injections see if there is any improvement, sadly this has been noticed by us all for a few years now and she has had two dementia consultations! it was only when I was diagnosed last year that I had even heard of b12. Then I noticed alot of the symptoms I had were the same except mums were far worse, thank you all for your helpful advice, I don't think I could get mum to take something that hasn't been prescribed by her GP, even though we all call him dr duck................

[Gambit62 Administrator in reply to Pixielula]

Think your position is actually quite similar to mine - if I'd known about B12 5-6 years earlier when it started to become obvious that my mother's cognitive abilities were declining I'd probably have started here earlier. As it was it took a trip to the hospital where she got lost twice and I had to call out security to find her that things actually started moving.

All the time the GPs and everyone was assuming that it was diabetes ... which resulted in a district nurse giving her her first ever hypo a week later and she then ended up in hospital - that was really scary.

Eventually they started her on B12 shots because her levels were falling even though they hadn't got to the bottom of the normal range. I didn't know about it at the time - so saw that she got better for a while in the cottage hospital and then started to go downhill again.

After she had been discharged I found out about the B12 by looking through her notes at home (has district nurse come round to do her insulin now - more to do with not seeing the point in proper hygeine as worries she'll get the doses wrong) That was enough to put 2 and 2 together - I need ridiculously large amounts of B12 and it looked as if mum was the same so started her on a nasal spray. It does seem to help - at one point the nasal spray ran out and her carer was getting really worried not having realised that. I changed the spray and within 24 hours she'd picked up.

The lack of judgement is the main problem now - she went up to London to stay with my brother for a few days after Christmas and didn't take any insulin whilst she was there - wasn't until the district nurse rang wanting to know why here blood sugar was so high that it became obvious that not only was she incapable of doing her own meds - she's now not really got the concept that she needs to make sure she gets them somehow.

Part of the dementia was that most of the stubbornness in her character had disappeared (one thing that always kept us from being close) so it is easier to tell her to do something and she does it, so there may be ways of medicating your mother that by-pass the stubbornness.

Whilst it may be too late to reverse the problems completely certainly hope that you can find a way of getting your mother B12 and that it gives her some more energy and stops things getting worse.

[Smethurst in reply to Gambit62]

Could I suggest that your mother is assessed by a psychiatrist who will automatically be looking for a a link between B12 , folate deficiency and cognitive impairment ..

[Sleepybunny]

hi,

Just wondered if she has ever been checked for Coeliac disease? Coeliac disease can lead to B12 deficiency.

coeliac.org.uk/coeliac-dise...

Link about Coeliac symptoms

It is possible to have Coeliac disease even if Coeliac blood test is negative.

coeliac.org.uk/coeliac-dise...

coeliac.org.uk/coeliac-dise...

Sadly auto-immune conditions can come in clusters.