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Is B12 deficiency Woo? Cutting edge medicine? Normal GP stuff?

(37 Posts)
KatyMac Tue 29-Apr-14 09:48:30

I keep reading about it & I can't decide

The NICE guidelines seem different to what my GP thinks & I am confused

ForeskinHyena Tue 29-Apr-14 10:26:40

Mine was low - I diagnosed it myself due to numbness and pins & needles (resulting in not being able to orgasm - or more to the point, it actually hurt when I did).

My GP was reluctant to accept that it was a problem, telling me it was borderline and that she would speak to her colleagues. I think she was pissed off that I'd gone in and told HER what I thought it was (the dreaded google!) I think she was under the impression that I'd been reading about Justin Bieber or Simon Cowell getting B12 injections in their dressing rooms and thought it was some kind of magic potion.

In fact I just didn't want to end up permanently numb due to nerve damage.

Anyway, I got a call saying that although it wasn't that low (mine was 300 with normal range being 400-1000!) she had decided to trial injections.

Needless to say I got much better, but it is an ongoing battle to get top-ups when I notice that I don't feel well again and she has no interest in finding out WHY my levels were low (I'm not veggie, eat lots of the right foods and don't have any diagnosed absorption problems).

KatyMac Tue 29-Apr-14 10:31:29

Mine is 151 with normal range being 120-1100

I don't understand why the range would be different

ForeskinHyena Tue 29-Apr-14 10:48:52

I think different places have slightly different ranges, not sure why. Different countries have wildly differing ranges sometimes, so what would be treated elsewhere can be left as 'in range' or borderline somewhere else.

At 151 I'm sure yours should be treated. If you don't have any joy getting injections at the GP then try sublingual methylcobalamin which you can buy at super strength from any reputable online vitamin supplier. It bypasses any problems with absorption from the gut by sitting under your tongue to dissolve through the skin. Mine also has folic acid in it, which is something else that is often deficient with this type of anaemia.

ForeskinHyena Tue 29-Apr-14 10:54:10

Sorry, just googling ranges and it seems around 180-200 is a more common lower range. Not sure where my original numbers came from.

I was probably quite lucky to get the injections with a level of 300, but I guess having the symptoms and other autoimmune conditions they gave me the benefit of the doubt!

KatyMac Tue 29-Apr-14 10:58:20

Yes my folic acid is low too

The presenting to the GP with what you think is wrong is tricky at the best of times and with some health anxiety/white coat syndrome it becomes very large

I also have ME/CFS, fibromyalgia & IBS all of which could be affected by possible B12 deficiency (if I've understood properly) and I may have had it for some years

Weegiemum Tue 29-Apr-14 11:07:39

Normal GP stuff, I've low B12 which was only picked up in hospital when I was admitted after actually going numb. The injections are only part of my treatment which also includes high dose VitD and also a rather fancy IV Immunoglobulin drip every 5 weeks. Strangely my folate levels are fine, but other B vits, especially thiamine, are also low, so I take a general BVit supplement too.

I'm unlikely to ever recover the damage done (not just by low B12 but also a chronic inflammatory immune disorder), but at least it's stopped spreading.

I know its normal GP as my dh is one, he's told me its quite common. The weirdest thing is the injections are bright red which always looks a little ominous to me!!

KatyMac Tue 29-Apr-14 11:15:22

So how do I do this - the GP says my B12 is fine but my Folate a little low

Do I need to go back & say actually my B12 is too low - that seems a bit confrontational?

I have (& have had for a long time) pins & needles, numbness, loss of power in my hands and myraid other symptoms which have all been attributed to my other diagnoses - my B12 has onlybeen checked twice in nearly 5 yrs (both in the last 6 months both around 150 - well 149 & 151)

bigTillyMint Tue 29-Apr-14 11:18:40

One of my colleagues has been diagnosed with Pernicious Anaemia due to very low B12. It is very serious and not at all woo.

KatyMac Tue 29-Apr-14 11:29:31

As I understand it, you can be B12 deficient without having pernicious anaemia

I have the intrinsic factor - so it may be that my IBS is preventing the absorbtion of B12 or my restricted diet just doesn't provide enough B12.

However from what I have read 150 is fairly low but in our area it is within 'normal' limits so I don't know how to proceed

maybeIwillmaybeIwont Tue 29-Apr-14 12:13:11

I was told by my GP that the 'normal range' in the UK was 200-1000, but that in Japan it was 400-1000.

Anyway it was no matter to me which range was 'normal' as my reading was 61!! A week later it was 57 !! (GP thought the first reading was a'mistake') so I immediately got the B12 injections.

No wonder I felt so rough!

KatyMac Tue 29-Apr-14 12:17:30

It is confusing as my GP doesn't see it as a problem - so I guess I have to persuade him

Any ideas how?

ForeskinHyena Tue 29-Apr-14 12:41:45

Katy, not sure you can convince a GP of anything which is why I ended up medicating myself. Not ideal I know, but if the sublingual tablets or drops help (especially given your potential problems absorbing through the gut) then I would give them a go.

Sadly a lot of GPs don't seem to recognise how debilitating these conditions can be and are also very much focussed on the numbers rather than the symptoms (well you are in range so it doesn't matter that you don't feel well, their job is done!)

I have become very jaded about GPs in general since my health problems and I'm a firm advocate for sorting it out yourself where possible.

maybeIwillmaybeIwont Tue 29-Apr-14 12:53:47

I didn't have PA, even with such a low reading, my low levels were the result of a tropical disease the year before.

It is confusing reading on the Internet all the different ranges but certainly I have found many that have the acceptable lower limit as 180-200, so a reading of 151 is low.

I had my injections and then had to wait a month for another blood test. That was over 1000, good news. And then I had to have another blood test 3 months later, that was also fine. I only ever had the one course of injections.

But OP, this is strange that your GP doesn't see your reading as a deficiency, especially with your other health problems maybe giving a reason for it.

Are there any other Doctors at your practice that you could consult? Do you have to always see your own GP?

KatyMac Tue 29-Apr-14 13:02:28

ForeskinHyena - that is what I'm afraid of

maybeIwillmaybeIwont - seeing another GP is tricky, with the anxiety I have I don't deal well with appointments generally. Some of the other GPs contributed to the situation - but I generally trust this one, because he is a bit more switched on

My anxiety really isn't helping me atm and none of my coping strategies are coming up with a solution

Wobblypig Tue 29-Apr-14 13:10:18

You should point out that folic acid replacement in someone with vitb12 deficiency or borderline levels is dangerous because replenishing the folic acid will cause increase demand for b12 and may precipitate overt b12 deficiency.

Doctors should always replace b12 first then add in folic acid.b12 deficiency when severe, can not only leAd to irreversible nerve damage in hands and feet but also optic atrophy.

You may to think about why you are deficient. B12 and folic acid are absorbed in different parts of the bowel. IBs is not a cause.

KatyMac Tue 29-Apr-14 13:17:03

Wobblypig - I am having a CT scan to investigate the IBS as the consultant said "it isn't quite right" - he speculated about a portion of inflammation in my bowel

Either way it's possible that the IBS is a symptom of the B12 rather than a cause - but unless it's treated we won't know.

My mum has B12 injections and has for 10 years but she has Pernicious Anaemia (& drinks a lot - I am teetotal, alcohol makes me very ill even in small quantities)

I have concerns of B12 being some sort of 'magic pill' which will fix my life; when in fact if it reduced any of my symptoms it would be most welcome

When I am brave enough to re-visit the GP hmm

Ghostsdonttalk Tue 29-Apr-14 13:19:29

NICE guidelines advise people with IBS to be tested for Coeliac disease. Vit B12 defiency very mainstream.

Wobblypig Tue 29-Apr-14 13:21:15

Yes KatYMac, you should know your intrinsic factor Antibody levels and ask about a Schilling test. I would not feel scared about the Gp business just go in and say you are concerned about this , they really can't argue. They would be negligent to replace folic acid without b12 in your case.

It is good you are under a gastroenterologist.

KatyMac Tue 29-Apr-14 13:21:52

Definitely not Coeliac - blood tests & biopsies both say no

Non-coeliac Gluten intolerance was a possibility - the the Gastro guy thought not

goodasitgets Tue 29-Apr-14 13:25:51

I don't know if this helps, but I take a really good multi vit. It's not the cheapest, but last time I had blood tests my B12 was unreadable (high) and there was a note saying "is patient on b12 injections?"
I was shocked at how well the multi vit must be working. I know my levels were well over 1000

KatyMac Tue 29-Apr-14 13:36:42

Thanks goodasitgets, but the chances are I can't digest B12 or it wouldn't be so low

bigTillyMint Tue 29-Apr-14 13:37:17

goodas, what is the multivit you take please?

goodasitgets Tue 29-Apr-14 13:48:19

I take these - but I buy off amazon or eBay or from Tesco nutri store. Prefer the chewables but the mini tabs are cheaper (it says take 6 a day but I take 3)

KatyMac Tue 29-Apr-14 16:21:56

I'm not sure self-medicating is the way to go (with all my other diagnoses)

But I could be wrong

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