Needing increasingly more B12 and balancing it.

[deniseinmilden]

Good morning!

Thank you again to everyone who has helped me so far and please forgive me for asking more questions but I'd really appreciate your views on how things are developing for me.

I've had 25+ years of symptoms following an autoimmunity problem in my teens. I was particularly bad 20 years ago and I was in bed for about 18 months. I gradually improved since then until about a year ago when I have got much worse again. This and the last bad spell have occurred following very stressful life events.

I had my loading doses at Easter and was then good but crashed around 20th May. I needed 7 twice weekly injections from the nurse to pick me up again. I was good by the beginning of July and chose to miss an injection, thinking I was "reloaded" & because I was worried that my Dr would be less supportive if I had more jabs than I had suggested I needed when first negotiating a treatment plan.

I deteriorated badly after the missed dose despite resuming twice weekly jabs and using lots of Boost sublingual spray. My Dr agreed to supply me with what I need for self injection which I have done daily since Tuesday. I have also been supplementing with spray and, on the recommendation of my Dr having read the BCSH guidelines I gave him (thank you Gambit & Sleepybunny), I have added Jarrows 5000 mcg sublingual lozenges to my armoury yesterday (thank you Polaris). With all this lot I am starting to function again but have a long way to "good".

I'm nervous my Dr may question my treatment levels when I request a repeat prescription this weak (Again? Already?) and my only answer is to provide the information on Functional B12d (thank you for the link Gambit).

All my other tests earlier this year came back OK and my folate was nearly 12 on a range of 2ish to 14ish (I can't quite remember). I have been taking a comprehensive multivitamin for a while which provides 400mcg of folic acid. I do not have PA, only B12d. Only B12 seems to make any difference to me but then it is a massive difference!

Do you guys think I now ought to be balancing my high B12 intake with extra folate?

Might that make me feel better?

Is there anything else I should be thinking of?

Is there anything else I should/could suggest to my Dr to ease his views on repeating my prescription and needle supplies? I think I will improve from now so long as I don't miss any doses (I'm always optimistic - unless my B12d is bad!!).

Looking forward to any views, Denise

[deniseinmilden]

P.S. Could it get any worse? If so what next?

I live on my own and am self employed so being well is a bit critical!!

[deniseinmilden in reply to deniseinmilden]

Sorry I know being well is critical to everyone! I meant is critical to the choices I make. D

[Sleepybunny]

Hi Denise,

Do you know your latest ferritin result or any other iron results? I feel more run down if iron is at the low end of the range. Vitamin C helps the body to take up iron.

Is the GP sure you do not have PA? It is possible to have PA even if your IFA (Intrinsic Factor Antibody) tests are negative. This is mentioned in the BCSH guidelines and I think is called antibody negative PA. The chairman of the PAS tested negative on more than one occasion before testing positive.

Some people have problems with the methylation cycle in their bodies. Some people do better using methyl folate and methyl cobalamin (methyl B12) rather than folic acid and hydroxycobalamin which is what the NHS injections contain. Methyl cobalamin is not available on the NHS.

You may find it interesting to google about MTHFR mutations.

[deniseinmilden in reply to Sleepybunny]

Thank you, Sleepybunny.

I've found the things I've read on MTHFR a little hard to fully comprehend (I reasonably understand the biology/biochemistry but I'm not getting the whole picture clearly, partly coz I can't remember what I've read for long enough to grasp a whole article) but from what I do and from less complicated explanations posted on here I don't think that's the problem....?

I've done much better on the hydroxocobalamin injections than the methyl sublinguals, although they do help. Whenever my system has run out of the hydroxocobalamin injection benefits it has taken increasingly greater amounts of hydroxocobalamin to get back on track and no amount of sublingual methyl will substitute. (I think) I am gradually improving again this time but on daily jabs rather than twice weekly.

My Dr says convincingly I'm not PA but I know he's been learning from me so... !

A nurse showed me the results of the tests and I know they were all OK (I'm fairly used to reading lab results) but I can't remember them now as my usually brilliant-with-numbers memory departed when I crashed again. I think I wrote them down before but I can't remember what I've done with them! Sorry! I'm a bit lost coz I'm usually organised but now keep doing erratic things that I'm not aware of (and I can't always blame the cat!! )

I will ask to see them again when I go on Tuesday.

Should I be supplementing at higher levels with folate or folic acid now I am intaking more B12?

I hugely appreciate your extra help and patience! Thank you!

[Sleepybunny]

"Should I be supplementing at higher levels with folate or folic acid now I am intaking more B12?"

Sorry I don't know the answer to this. Hopefully someone else can help. The folate result you mentioned (12 ) seemed reasonable but I think the need for B12 and folate varies between individuals.

[deniseinmilden]

Thank you! That's what I thought too!

[jay47]

Hi deniseinmilden, you describe the symptoms, alarm and frustrations I 've battled with. The memory thing and inability to concentrate on things... However, as you have had other health issues over a long period I wonder if you are mineral deficient as well. Hv your vit D checked. There are minerals involved in b12 biochemistry in relation to dna synthesis and mitochondrial function that may need tweeking. There are refs to them and I hope someone on this forum will be able to post on them. Magnesium and coQ10 have helped me. Higher folate supplementation is not a good idea as your level seems ok.

[deniseinmilden]

Thank you very much!

I'll try looking into those too!

[Polaris]

I hope all goes well with you from now on Denise,

Re. question of folate, I hope these links help:

rivm.openrepository.com/riv...

Page 17. "Comment by Authors :

"Anyway, the best treatment for vitamin B12 deficiency subjects is supplementation with vitamin B12 and not additional folic acid."

b12deficiency.info/films/

Haemotologist's quote:

"If you treat someone with B 12 def. with folic acid, you can either precipitate neurological abnormalities or, if the patient already has neurological abnormalities, you can make them worse. So folic acid should never be given empirically unless the B12 status is normal."

gbhealthwatch.com/Nutri...

"High levels of folate are normally okay as long as your vitamin B12 level is also normal. Cells need vitamin B12 to use folic acid and when vitamin B12 levels are too low, folic acid cannot be used and builds up in the blood."

[deniseinmilden]

That's very interesting and gives a more scientific background which is very useful as there is quite a bit of conflicting advice.

The last comment gives a likely explanation of why my folate levels were so good.

I will read the articles again and will ask the nurse about my levels tomorrow.

I am starting to feel better today and so hopefully will be able to work out a good strategy. It seems that the really vital bit to me is a regular supply of lots of B12!

Thank you very much Polaris - I'm really grateful for your efforts.

Best wishes, Denise

[LolalalalalaLola]

Hi Denise, well you seem to have had a really rough time of it, I hope things pick up for you. I'm currently trying to get my doctor to give me a more regular course of injections but things don't look good.

I though you might find this snippet from Martyn Hoopers new book on pernicious anaemia interesting.

Patients suspected of having pernicious anaemia should be tested for intrinsic factor antibody. Patients found to be positive should have lifelong therapy with cobalamin (Grade 1A).

 Patients negative for intrinsic factor antibody, with no other causes of deficiency, may still have pernicious anaemia and should be treated as anti-intrinsic factor antibody negative pernicious anaemia. Lifelong therapy should be continued in the presence of an objective clinical response.

I was told I didn't have pernicious anaemia "just" a b12 deficiency but actually the tests are not accurate and more often than not people are not given the correct diagnosis.

I hope everything goes well for you.

[deniseinmilden]

Thank you very much for that!

Thankfully with the daily jabs, supplemented by the sublinguals

I am feeling fairly OK and am able to work.

I hope you manage to get a good treatment regime which makes you well without more crashes - which in my case have been quite damaging!

Best wishes! Denise x