Concerned if Getting Right Treatment

[sleepyowl]

Hi Everyone, I hope you can help...

A month ago my blood tests came back as being low in Vitamin D, B12 (borderline low but out of range) and low folate. My liver results were also all over the place but I have Hemochromatosis (Iron overload) so it's difficult to know what's causing what.

Hopefully Vitamin D should be normal now as I've been on high dose for almost a month. However my doc has only given me supplements for folate not B12 (2 months of 5mg per day) then wants to retest everything after. She says the B12 might normalise after the folate supplements?

I'm a bit worried about how breathless I'm feeling and have read this can be a symptom. I went on a very gentle and short bike ride earlier today and it brought on asthma. I've had to take a Ventolin inhaler 3 times since i got back (hours ago) and still have a tight chest and breathlessness.

My B12 results were: Serum vitamin B12 level 178 ng/L [197.0 - 771.0]

Outside reference range.

Should I be being treated for B12 as well as folate?

Thanks so much,

Jen.

[clivealive Forum Support]

Hi sleepyowl zzzzzz

I'm not medically trained but you are vitamin B12 deficient and should be being treated for that before the folic acid supplement.

This N.H.S. site may help you (same guidance as in the BNF) see:

patient.co.uk/doctor/Pernic...

Scroll down to Management [1]

second paragraph.

"Care should be taken not to give folic acid (instead of B12) to any patient who is B12-deprived, as this may result in fulminant neurological deficit".

Please go back to your doctor and ask to have injections in accordance with the B.N.F. guidelines.

bnf.nice.org.uk/drug/hydrox...

I wish you well.

[sleepyowl in reply to clivealive]

Hi clivealive,

Thanks very much for the information and well wishes. I have an appointment later this afternoon and will quote that to my Dr. I'd have gone another 2 months on the folate supplements had I not struggled so much to breathe yesterday and thought I'd better look into it. I hope my Dr listens... initially, before my blood tests my GP cut me off midway through trying to explain my symptoms and said "You can't keep adding symptoms, you'll have to make another appointment!"

[clivealive Forum Support in reply to sleepyowl]

Your doctor should have a copy of the British National Formulary (BNF) on his desk - it's his "Bible" either that or look it up online.

I hope you get on O.K. - please let us know

[sleepyowl in reply to clivealive]

Good to know, thanks. I just looked up the doc I'm seeing and he's the most qualified of all the GPs at he surgery (fortunately for me) so I feel a little better about going now

[sleepyowl in reply to clivealive]

Just an update... Doc was very thorough and listened to the guideline info I passed on... start B12 injections on Monday. Also found out I have high blood pressure which I've never had before so have to monitor that at home for 2 weeks and go on medication if it doesn't come down Wasn't expecting that, but might explain the sudden headaches I've been getting... all seems to have come at once.

Thanks again clivealive and fbirder *hugs*

[fbirder]

Don't take the folic acid. Not yet!

You are deficient in B12. Taking folic acid will not 'normalise' B12 levels. However, the folic acid will mask some of the symptoms of the B12 deficiency and possibly exacerbate others. The B12 needs to be treated before the folate.

Print this out. It's written by NICE - the National Institute for health and Care Excellence. cks.nice.org.uk/anaemia-b12...

Highlight the relevant bit:

How should I treat a person with folate deficiency anaemia?

Prescribe oral folic acid 5 mg daily — in most people, treatment will be required for 4 months.

However, folic acid may need to be taken for longer (sometimes for life) if the underlying cause of deficiency is persistent.

Check vitamin B12 levels in all people before starting folic acid — treatment can improve wellbeing, mask underlying B12 deficiency, and allow neurological disease to develop.

Send it to your doctor in a letter asking that your B12 is treated ASAP.

[sleepyowl in reply to fbirder]

Thanks for info fbirder, much appreciated I've already taken about a week's worth, but have stopped now.

I already have neurological issues... even my Mum's noticed my cognitive decline... I've also had varying degrees of tingling and numbness for years

[fbirder in reply to sleepyowl]

In that case you need to make sure you have the correct treatment, as described in the BNF -

A course of loading dose injections. Every other day, until there is no further improvement in symptoms. Followed by one injection every 8 weeks.