B12

[rubysjules]

Hi all my b12 was 245 I oct last yr doc said wAs normal , I have since been diagnosed with hypo and antibodies . Now on thyroxine. Have awful balance and vertigo problems that gave got worse as the year goes on. Now I understand the importance of b12 I have I ly just spoke to her about it she said its at the low end but in range and therefore normal!! I don't eat meat, fish, eggs or milk do get next to no b12 in my diet!! I remember her saying last year I am fine with a balanced diet!!!! Is the best route for me jarrows supplement? I am concerned about this level in light of my symptoms! Thanks

[nobodysdriving]

HI there,

you could ask your GP if he/she would refer you for an 'active B12' test with Guy's & St Thomas' (GSTS) pathlab, you can either go to St Thomas' (in central london) or post the blood sample to them, the active B12 is a lot more accurate and you may well come out 'deficient' in that one, which would give you the diagnosis you need for your GP to prescribe injections, if you are deficient injections are the best way to fix your symptoms quickly and effectively.

gsts.com/new-tests.html

call them on the number provided to get details in full

[nobodysdriving in reply to nobodysdriving]

also, DO NOT supplement with any oral B12 until you do the active B12

ps your GP has to refer you but they will charge you for the test I think, do call them and ask

[shaws Administrator in reply to nobodysdriving]

I paid £18 for the test but it was extremely quick. There was no queue.

[Pepekins in reply to nobodysdriving]

My B12 (usual one from GP) came back as 669 and the special active one done at St Thomas'

was 128. I have TT thirteen years ago and have not supplemented. I think they are ok aren't they?

[Hidden]

If you eat no animal products at all then you definitely should be supplementing B12. Here is a good article on this:

chriskresser.com/what-every...

The fact that you are also hypo puts you at higher risk of autoimmune Pernicious Anaemia anyway, even without the vege diet. You have a choice at this point: you could seek further more sensitive testing, namely Active B12, possibly MMA and Homocysteine. Also antibody tests: anti-intrinsic factor, anti-parietal cells. The benefit of a proper diagnosis is you can receive treatment on the NHS, the B12 injections raise your levels much faster, and if you actually have PA the treatment needs to be lifelong, an expensive undertaking if self-treating. The drawback is its quite a fight to get diagnosed when serum levels are "normal", and even when diagnosed the treatment plan is often inadequate (as anyone on 3 monthly jabs will tell you).

If you believe your low levels are just dietary, then go with the sublinguals. Jarrows are good, 1000mcg or 5000mcg Methyl B12. Make sure you take some folate as well, in fact a B-complex is actually a good idea (I take Jarrows B-Right). You need to take the B-Right with food, and be warned it turns your wee florescent yellow!

If your folate is in the low normal range a higher dose might be needed initially; as an example, a doctor would prescribe 5mg (5000mcg) per day for a folate deficiency. Most over the counter folic acid supplements and B-complexes contain 400mcg, which might be fine as a maintenance dose but not if you need to raise your levels.

And as always you need a good level of ferritin/iron, along with B12 and folate, for the healthy formation of red blood cells. And don't forget to check vit D levels too

[Hidden in reply to Hidden]

Was writing my response when nobodysdriving replied, completely agree don't supplement if getting the tests.

H x

[rubysjules in reply to Hidden]

Hi thanks, private tests are not an option. i am severely anaemic and been on ferrous fumarate 3 times a day for 3 years now. but my b12 wasn't tested then. folate was also 'normal'! however i have spina bifida occulta and had a sister who died with full spina bifida, oobviously linked with folic acid and folates. I dont eat any animal products at all and havent for 30 years. i also dont eat fortified cereals as am gluten intolerant. doc wants to se me on friday as i am at the end of my tether my blood pressure is uncontrolable despite meds and am waiting for endo appointment.

[Hidden in reply to rubysjules]

Well it sounds to me that you could really use B12 injections and a folic acid supplement from your doc. You have multiple risk factors for deficiency. 30 years without animal products on its own would be enough. See if your doctor will trial you on it - you could bring along info from the B12d.org website, or maybe send to your doc in advance of the appointment so they can read it first.

This is the treatment protocol suggested by B12d.org:

b12d.org/sites/default/file...

And a couple more useful links from the same website:

b12d.org/book/export/html/1787

b12d.org/book/export/html/1762

Ask him what your last folate result was, anything low normal can cause symptoms.

[nobodysdriving in reply to Hidden]

I agree with hampster, you need B12 injections not tablets, also folate should be at least 12

[lucylocks in reply to nobodysdriving]

Hi

Should folate be at least 12 for all who are underactive as mine is only 5.3

thanks

[nobodysdriving in reply to lucylocks]

yes 12 is the 'optimal'

[lucylocks in reply to nobodysdriving]

Thankyou

[rubysjules in reply to Hidden]

thankyou! i ahve just been on pernicious anaemia site and I am amazed! how is my doctors not even considering this may be an issue!!

[Hidden in reply to rubysjules]

Simple. Because they really don't know anything about it.

[rubysjules in reply to Hidden]

I am so cross!!

[rubysjules in reply to Hidden]

Hi thanks. My doc is not interested on any of this as she says its not logical to tinker and we have ranges for a reason!!! She accepts I am Ill but not interested in any of this!!

[Hidden in reply to rubysjules]

A typical reaction I'm afraid. She is of course wrong. I would recommend you research this yourself, and either 1) try to educate your GP 2) try a different GP 3) get the active B12 test or 4) self supplement.

You should read "Could It Be B12? An Epidemic Of Misdiagnosis" by Sally Pacholok & Jeffrey Stuart. All GP's who dismiss B12 should be presented with a copy of this book! Also lots of advice and supporting articles and information on the PAS website - pernicious-anaemia-society.... - particularly in the forum. The Chairman of PAS has also written a book "Pernicious Anaemia: The Forgotton Disease" by Martyn Hooper.

[Hidden in reply to Hidden]

Hi there

can you confirm that B-Right is to be taken as an alternative to Jarrows methyl B12 and not in conjunction with. thanks

[Hidden in reply to Hidden]

No, not as an alternative.

The B-complex is in addition to any other B12, injections or supplements, you are taking. It is simply a wise precaution to stop your other B's (B1, B2, B3, B5, B6 etc etc) from getting out of balance. You could take a very good well balanced multi-vitamin instead, it's really up to you. I was just putting forward my own experience, i.e. what I take.

The B12 deficiency itself must be treated with high dose B12. In the UK this is via hydroxocobalamin injections on the NHS, or methylcobalamin injections or infusions can be obtained privately. Many people source their own injectable B12 from mainland Europe where it is widely available over the counter, either cyanocobalamin or hydroxocobalamin. I am not advocating this, just pointing out that it happens.

Alternatives to injections are sublinguals, either tablets that melt under the tongue, mouth sprays or nasal sprays. These tend to be methylcobalamin, but you can get hydroxocobalamin sprays, and the most active form adenosylcobalamin (dibencozide).

The B12 pathway is complex and everyone is different. There's a tendency to say that Methyl is best, but actually lots of people do just fine on Cyano or Hydroxo. With the general lack of awareness surrounding B12 treatment options within the NHS it really is a case of trial and error to find out what works best for you.

I'm still on that journey myself. I get on very well with the Hydroxo injections, but adding in the Methyl sublinguals as well has been great. I used to think they weren't doing anything and stopped taking them for 3 days, I was wrong! At some point in the future I might add in some Adenosyl to see if that helps.

You really need to do your own research, and find what works best for you. I hope this helps.

H x

[Hidden in reply to Hidden]

Thanks for your very comprehensive reply. I have been trying to do the research and there is lots of information on B12 deficiency etc but what is more difficult to come by is whether a B12 of 470ng/L (10-900) could do with a bit of supplementing for a UAT. I don't seem to be 'deficient' and as Jarrows B-right contains B12 I just thought I might be overdoing it to take methyl B12 as well.

Anyway I will plod on, but thanks anyway for your time.

Jx

[Hidden in reply to Hidden]

Depends, do you have symptoms of deficiency? Serum B12 levels aren't that relevant, you can be deficient at any level. This is an interesting summary:

ncbi.nlm.nih.gov/pubmed/221...

If you feel you have symptoms that are not related to thyroid, you could do a B12 trial. I personally would go with the 5000mcg sublinguals. Keep a symptom diary and if no change then B12 isn't the issue. If B12 is an issue, it's common to feel worse before you feel better. Changes can be subtle at first so it's important to keep a daily diary. Neuro symptoms can take years to fully resolve, some damage can be permanent.

Having read so much on this subject I honestly feel most people can benefit from a supplement (IMO). My kids get a multivitamin and a spray of Boost every day as I never want them to experience this disorder.

H x

[Hidden in reply to Hidden]

It seems a complete travesty to think that the money spent by the NHS on serum Vit B12 tests don't tell you the whole story or give you the wrong story.

The main symptoms I have are tingling feet and low mood. An increase in thyroid meds plus addition of T3 have left me feeling better, but these 2 symptoms still persist.

I think I will do a B12 trial with 5000mcg sublinguals, seems the simplest way of finding out if Vit B is a problem. Should I add in some other B's with it, I have some Vit B1, B2 and B6 to hand, I know its up to me but hopefully they won't do any harm.

My thanks

Jx

[Hidden in reply to Hidden]

Folate (as folic acid) is the key one to take, about an hour before the B12. Usually about 400mcg folic acid in a B-complex. Higher dose needed if low normal.

[Hidden in reply to Hidden]

Your a star, thanks. will let you know how it goes.