B12 levels

[Misaya]

Hi folks. To cut a long story short I finally managed to get my doctor to check my B12 level after experiencing quite a few symptoms e.g. dizziness, extreme fatigue, brain fog, pins and needles in my feet etc. The results came back at 185 which he said was the low end of normal and that they wouldn't treat unless down to 120. Does that sound right? He did say my iron levels were low and gave me iron tablets. Thanks in advance

[clivealive Forum Support]

Hi Misaya did you tell your doctor the symptoms you are having and was your Folate tested at the same time?

I'm not a medically trained person but I think your doctor should be treating your low B12 according to your symptoms not just reading what is on the screen.

[Misaya in reply to clivealive]

Thanks Clivealive.

Well he knows about the symptoms as they have been ongoing for quite some time and I have seen various consultants i.e. ENT, Cardiologist, Neurologist. I've had an MRI and sleep monitor both of which were clear. These referral were for dizziness and fatigue. The Cardiologist picked up slight irregularity with my heartbeat but said medication would probably make me feel worse. The pins and needles are new and he suggested a trapped nerve. To be honest he is pretty fixated on it all being depression/anxiety related and just offers anti-depressants. I don't actually know if he tested the Folate levels.

[Gambit62 Administrator]

are you based in UK - if so then the treatment is contrary to current guidelines provided by NICE and BCSH.

B12 serum test is known to be a poor single indicator of B12 deficiency so using it as a sole indicator, without evaluating symptoms - even if macrocytosis isn't present - would be poor practice and potentially result in permanent neurological damage if there are neurological symptoms present - pins and needles for instance.

Has your GP offered any explanation as to why your iron is low (something which could also cause most of the symptoms you mention)? If you are pre-menopausal female then probably just going by the general assumption that it is down to periods but it could be an absorption problem and if you have problems with iron absorption you will have problems with other minerals and vitamins.

[JGBH in reply to Gambit62]

Thank you Gambit. Useful information for people who are desperately seeking help.

[Misaya in reply to Gambit62]

Hi Gambit

Yes I'm based in the UK. No he didn't say why the iron level is low and I didn't think to ask. But I will next time I go.

I'm 63 so not pre-menopausal but seems possible to be non-absorption as I believe that becomes more common in later life

Thanks for your reply.

[Gambit62 Administrator in reply to Misaya]

hope you can get through to your GP - if not let us know.

really is frustrating that it wouldn't occur to your GP to wonder why your iron is low - think the NHS guidelines are that the reason should be identified rather than just doling out tablets. Hey ho!

[Misaya in reply to Gambit62]

I am vegetarian so he may just put it down to diet I suppose. But then I think once you start to get older you get written off more than when you're younger. Also I think he is getting a bit fed up with my internet research lol.

[Gambit62 Administrator in reply to Misaya]

not so sure on the older - my first experiences of being 'written off' really go back to age 10! but know what you mean.

[Ryaan in reply to Misaya]

Lol

My gp was confused after my internet research and gave in.

Hope you get to the bottom of your problem, I think u should be treated for B12 as it's very low as it does cause many of the symptoms you listed.

[Sleepybunny]

Hi,

Are you in UK?

If you are UK based I'd suggest reading the following info.

1) flowchart from BSH cobalamin and Folate guidelines

stichtingb12tekort.nl/weten...

Makes it clear that in UK, patients who are symptomatic for B12 deficiency should have an IFA (Intrinsic factor antibody) test and start initial b12 treatment whether they have low B12 or a within range B12result.

2) whole BSH Cobalamin and Folate Guidelines document

b-s-h.org.uk/guidelines/gui...

3) BMJ b12 article

bmj.com/content/349/bmj.g5226

4) BNF (British National Formulary) Chapter 9 Section 1.2

evidence.nhs.uk/formulary/b...

5) Book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. I gave a copy of this book to my GPs. It's up to date with UK B12 guidelines.

Martyn, chair of PAS, has written other books on PA and B12 deficiency. I cried when I read "Living with PA and Vitamin B12 deficiency" because reading some of the case studies was like reading about myself.

6) PAS (Pernicious Anaemia Society)website

pernicious-anaemia-society....

PAS tel no [phone] Answerphone so messages can be left.

7) B12 Deficiency Info website

b12deficiency.info/

8) b12d.org website

b12d.org/

What to do next?

b12deficiency.info/what-to-...

b12deficiency.info/b12-writ...

B12 Deficiency Symptoms

"dizziness, extreme fatigue, brain fog, pins and needles in my feet "

The above symptoms can be found on lists of B12 deficiency symptoms. I gave my GPs a copy of PAS checklist with all my symptoms ticked.

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Causes of B12 Deficiency

b12deficiency.info/what-are...

Another B12 book

"Could It Be b12" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive book about b12 with lots of case studies.

Lots of B12 info in pinned posts on this forum.

UK B12 blogs

b12deficiency.info/blog/

martynhooper.com/

News items on PAS website also interesting in my opinion.

pernicious-anaemia-society....

Both blogs have some interesting stories about UK treatment or lack of it in some cases.

Unhappy with treatment?

b12deficiency.info/b12-writ...

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medicla diagnoses and treatment.

hdapatientcaretrust.com/

I am not a medic just a person who has struggled to get a diagnosis.

[Misaya in reply to Sleepybunny]

Hi Sleepbunny

Yes I'm in UK. Thank you so much for your reply and so much info. I'll start working my way through it.

Actually I did take the checklist and talked him through which ones applied. I think that was the only reason he agreed to the test as I have been trying to get him to do it for a few months with no success.

Thanks again 😊

[JGBH]

What a comprehensive lot of information! Thank you on behalf of persons who are fighting desperately to find a way forward in getting better against a barrage of obtuse mindset from unwilling GPS. They do not want to know. They have a different agenda ...

[Sleepybunny]

"don't actually know if he tested the Folate"

"He did say my iron levels were low"

Blood test results

One of the most important things I learned in years of trying to find out what was wrong was to always get copies of all my blood test results preferably with reference ranges.

I learned to do this after being told everything was normal face to face or over the phone and then finding abnormal or borderline results on the copies.

nhs.uk/NHSEngland/thenhs/re...

england.nhs.uk/contact-us/p...

"results came back at 185 which he said was the low end of normal and that they wouldn't treat unless down to 120"

It's possible that your GP is unaware of the BSH Cobalamin and Folate guidelines. I gave my Gps a copy of BSH document. The flowchart I gave a link to, refers to investigating B12 levels below 200ng.

It could be that your GP is using local area NHS B12 deficiency guidelines instead of BSH Cobalamin guidelines. Some of these local B12 guidelines differ from BSH, BNF guidance. Might be worth you trying to track down a copy of local B12 deficiency guidelines for your area. An internet search, search on local NHS website, FOI (Freedom of Information) request to local NHS website might track them down. If all else fails MP might be able to help.

Practice managers should be able to say what B12 treatment policy is being used at their surgery. I believe Freedom of Information requests can be submitted to practice managers. I suppose that could irritate them though.

CCGs (Clinical Commisioning Groups) might be able to tell people if the BSH Cobalamin and Folate Guidelines are being used in the area they cover or if it is local NHS b12 deficiency guidelines being used.

nhs.uk/servicedirectories/p...