Other Vit supplements

[Galadriel1]

Hi all, I am finding it difficult to get my head round the vitamins I need to supplement to support the B12 injections.  I am presently having B12 twice weekly (probably not for much longer)  I have been tested for Vit D deficiency which came back at 25, so now have been given colecalciferol 20000 units to take twice weekly for 7 weeks with a blood test after 4 weeks to check calcium.  I am reading that I need vit K2 to help the calcium go where it should, can anyone tell me how much to supplement please.  Also can anyone help me with how much I should supplement for the other vits and advise if any I need are missing please....  I just find it all too confusing! 

Folate

Vit B6

Other B vits

Potassium

Magnesium

Vit D (once prescribed stuff stops)

Vit K2

Thanks to everyone on this forum for all the advice and help given. 

[LtAngua52]

If you have neurological symptoms you should be having injections every other day until symptoms stop improving and then every two months, three monthly without neurological symptoms. Look at the guidelines in bcshguidelines.com you also need an optimal level of folate for b12 to be efficient. I take 400 ncg every day but I don't know what your level was. I take 5000 IU of vitamin D3 every other day with 100 mg of vitamin K2, my vitamin d level was 9. You also need a good vitamin B complex.

Have you had ferritin tested? I don't know about the other vitamins. Remember though that what I take is based on my levels. If you can post your levels on here, with the ranges, I'm sure other members will be able to help you more than me.

[Galadriel1 in reply to LtAngua52]

Thank you for your reply, have put together levels I know about and put as a general reply so others might see and comment too.

[Galadriel1]

Hi LtAngua52,  I did have every other day for four weeks and then after a threat of withdrawal (long story sure it's in an earlier post) thought I'd best try to reduce it myself to keep some sort of control.  I tried to go 2 weeks was far too long and when asked to go back to every other day as not ready to go any longer Dr would only allow twice weekly which he has since denied and said he only agreed weekly, although nurses are still giving me it twice until I have another Dr. appointment.

6 loading doses in Dec. then stopped treatment until letter from haematologist saying every other day until no further improvement and resumed loading again 25th Jan.  Blood forcibly taken to re-test on 17th Feb and threat to stop treatment, had 1 more next alternate day and then 2 week break as mentioned above, then twice weekly since 7th March.

Folate 02/11/15 - 5.6 ng/ml (3.1-20.5)      17/02/16 - 4.8 ng/ml

B12 02/11/15 - 155pg/ml (187.0-883.0)   17/02/16 - >2000 (+)

Vit D tested beginning of April (I think), level was 25, (ref. 80 - ?) - can't find it now.  14/04/16 Prescribed colecalciferol (D3) 20,000 units twice weekly dose for 7 weeks.

Don't know about any other vit levels or how to find out.

[LtAngua52]

Doctors make me angry. B12 injections should be for life! The guidelines say this. You can't overdose either as excess is just excreted away, it's non toxic as it's water soluble. Try to increase that folate too. You could always use b12 supplements in between or self inject which is my next move! No need for more b12 tests as they are now skewed, again guidelines say that. Wish doctors would read these things and act upon them. 

[Gambit62 Administrator]

This is link to the EFSA recommendations on daily upper limits for supplementation of various vitamins and minerals

efsa.europa.eu/sites/defaul...

includes reasoning around the limits as well.

B6 - be careful - can cause neuro problems if you take doses over 100mg a day for a long period

Magnesium - can cause diarrhoea - so if you try and find you are getting diarrhoea suggest you stop supplementing

[Galadriel1 in reply to Gambit62]

Thank you Gambit62 I had seen the EFSA link before and did start looking at it but couldn't get it all straight in my head, will try again as I had forgotten about it until I saw your link.  I am seeing Dr on Friday, will bring up the vitamin supplementation and see if they can check levels and prescribe some for me and was also going to ask for referral for MRI to check for any damage to spine.  Is there any other tests worth asking for after commencing B12 treatment or are they all unreliable or skewed once supplementation has started?

[Gambit62 Administrator in reply to Galadriel1]

As the B12 deficiency has arisen because of an absorption problem it should be expected that you may have problems with other vitamins and minerals, so may need to supplement.  Although the problem with B12 is mainly focused on the ileum it could be a more general problem - eg lowering of stomach acidity levels which would affect a lot of things.

There is guidance out there that vitamin supplementation isn't necessary and a balance diet is what is needed.  Whilst this is good advice it would need to be taken with care if a person has an absorption problem

The one vitamin to monitor specifically with B12 is folate because of the close interaction between the two.  If you have anaemia and are taking loading doses then potassium levels need to be monitored.

I think most of us go with listening to what our body is telling us and supplementing on that basis though a good vit B complex is also recommended.