Does anyone know why vit B12 levels would jump from lowest end of range with no supplements to well over the top on just 2500 mcg a day?

[jezebel69]

After low test result in October I started supplementing. I arranged full bloods with Blue Horizon and stopped all supplements at least 3 weeks before. Even with doing this my result rocketed from 189 to 1103.(range 190 - 989) Has anyone had a similar experience? I will post other results when I have sorted them by relevance.

[Hidden]

Hi Yes both myself and husband had similar experience with B12 supplementing. Both our readings were around 1300 same reference range to yours.

[Hidden]

Maybe because that's actually quite a high dose of B12? The UK recommended daily amount is 1.5mcg. Now, don't get me wrong - the UK RDA is clearly woefully inadequate. Nothing to worry about though - B12 is water soluble, like all B vits. Sounds like supplementing has been really successful!

[lucylocks]

Hi

Yes the same thing happened with me. I supplemented last year for 5 months, after my serum B12 was 377. I then stopped for 2 months to have the active B12 test and it came back top of the range. I have not supplemented since and had another active B12 test last month and the result came back well under mid range.

How I look at it is that even after 2 months of stopping the supplement it was still in my system but after 4 months it has now not in my system.

[lucylocks in reply to lucylocks]

Sorry forgot to add supplemented with the same dose as you.

[Hidden]

Just to add that B12 is stored in the liver - it can be stored for a couple of years (though of course, if you don't replace it, it gets used up).

[jezebel69]

Thankyou everyone - I dont feel like a B12 storing freak now lol

I was disappointed that none of my hypo symptoms were alleviated at this level though.

[Hidden]

My daughter had a high reading after B12 injections, and her GP stopped them. Then 3 months down the line her B12 was back in the 100's. I think he finally got the message, but of course all my daughter's symptoms came back, now she's having monthly injections and supplementing in between with remarkable results. Just in a half term period she looked amazing, she also had been taking Armour though

[Luna]

B12 is stored in the liver and used when it is needed. In people like me, who have PA, I cannot store or absorb it through the usual channels. I use what I put in by injection. But, supplementing may raise blood serum levels but this is not a true picture of active B12 I.E What you use at cell level. I have read about many people who have a serum B12 in the 1000's yet they are still feeling low. Quite simply, they are not putting in enough for their needs. Even if you have a range in the !000's you may only be using 1-2% of it in reality which is why some of us need very regular treatment in order to feel better, regardless of what our blood serum levels show.

[lucylocks in reply to Luna]

Hi

My first active B12 test was at St Thomas'

level 107 range 25 - 108 this was after I stopped supplementing for 2 months.

4 months after stopping supplementation I had another active test at Blue Horizon this time level

is 69 range 25.1 - 165

Blue Horizon do not give a Grey area but

St. Thomas say 25 - 70 should be referred for confirmation MMA analysis.

Could you offer any advice on this please as I have lots of symptoms of B12 deficiency, I am also hypothyroid. G.P. says serum B12 in range so there is nothing he can do.

Any comments gratefully received.

Many thanks Browny

[Luna]

I can't comment from any experience with active B12 tests. It appears from the Blue Horizon test that you are on the lower end and that your levels appear to be dropping.

All I can say is that GP's are not interested, as you know, or knowledgable in B12 deficiency or what the various causes of it are. If it is of any interest to you, when I first started B12 treatment, even after 6 loading dose injections and then injections one a week thereafter, my bloods were not showing very high serum levels despite the regularity of injections. I was still feeling awful and so then took matters into my own hands by self injecting. I injected every other day for several months and now, 3 years later, I have to inject twice a week to be able to function. Often it is about finding a level that we feel comfortable with and not what the tests/bloods tell us.

Of course, as you may know, when we supplement with B12 injections/supplements, we need also to supplement folate and watch our ferritin levels. B12 and folate work together and you cannot fully utilise B12 without folate. Many of us on treatment often have to have our folate in the upper end of the ref range to benefit. This of course means regular supplementing.

So many factors dictate how we feel and to feel better, we often have to experiment and be our own medical detective. I don't know about thyroid meds but do suspect that I have a thyroid condition from symptoms, so will need to get another thyroid test done at the Dr as the last time, they said that I was in range. I looked at my results and from memory, they all looked Ok but what do I know? Lol Sorry I couldn't be of more help.

[jezebel69 in reply to Luna]

Hi Luna - when my serum B12 came back as 1103 (191-946) my ferritin was high 164 (5-148) and my folate serum was 6.9 (4.6-18.7) These figures mean nothing to me - can you help?

[lucylocks]

Hi

Many thanks for your reply, yes you have been a great help. Last time I supplemented did not know about taking folate and possible iron with the B12 and I developed numbness on the right side of my face, G.P. sent me for a CT scan and thankfully it was O.K. Some one suggested I may have knocked my other B's out by just supplementing with B12 only and this could have caused the numbness. I am now wondering like you say I maybe did not utilise the B12 my not taking folate and this cause the cheek numbness. It did settle down but last week it came back bad for a day then settled down again, but I am still getting numb spots on my nose and lips. I also get tingling on face and tingling in hands and feet.

I think I may need to take a good B Complex containing folate and some iron as well along with the B12 now

Regarding your Thyroid if you get your results and post on here someone will comment on them, as you know G.P.s say they are in range when in fact they could be causing symptoms.

When I first started on Levothyroxine they kept me on a low dose and kept saying I was in range but I still had all the symptoms so I had to push for a higher dose.

Thank you and Best Wishes