Raised B12

[hooper]

I have had my test results today. My b12 level was 913.0 ng/L, range (191 - 663) - described as " Above high reference limit". The report stated, Satisfactory, No Further Action. Can anyone explain this to me please. I am worried something is very wrong!

[PinkNinja]

Are you taking supplements? If so, you will most likely have a high B12 result. If not, there may be other reasons why it is high and I would be surprised they are not investigating or at least telling you the reasons.

[hooper in reply to PinkNinja]

Only taking Evening primrose oil, garlic capsules, omega 3 fish oil and vit C with zinc.

[PinkNinja in reply to hooper]

In that case perhaps you should ask your GP why your B12 is high. They seem quite happy to not treat hypothyroidism when TSH is high and it seems they also dismiss high B12!

If you are worried there is something wrong a full blood count might help to either reveal something or put your mind at rest. Don't be fobbed off. You deserve an answer

[hooper in reply to PinkNinja]

I had these tests done at the same time Carolyn:

Vit d; 57.2 (<10nmol/L - Deficiency)

36 - 60 nmol/L - Aequate for optimal bone health, concentrations at the upper end of the range may be preferable and advice on diet and safe sun exposure may be appropriate.

>60nmol/L - Optimal.

Vit D report Satisfactory , No Further Action

Serum folate level 8.4ng/m (4.6 - 18.7) Satisfactory, No Further Action

Serum ferritin level 44.0ng/ml (13 - 150)

Serum TSH level 1.3 miu/L Normal, No Further Action

[QUE6T-33 in reply to PinkNinja]

Hi Carolyn - what area of FBC would you be looking at with

regards any insight into elevated B12 ?

[Loopybird]

Hi Hooper,

I am no expert, but it may be that there is a problem with the Methylation pathways, wherin there might perhaps be a blockage stopping B12 converting to Methylcobalamine (active B12)

The seum B12 blood test shows total B12, a very small amount of which is active the rest inactive, it could be that all the inactive B12 is pooling in your blood and you have none or very little active B12 ....meaning you could still be very deficient and likely therefor to have many Symptoms ?

As I said I am no expert have just had Pernicious Anemia for many years, and have researched that and B12 deficiency a little....I think a GP visit is in order to discuss what they intend to do is in order.....

Regards

Loopy

[hooper in reply to Loopybird]

Thank you Loopy. Doesn't sound good! Is it serious?

Jen x

[Loopybird in reply to hooper]

Hi Hooper,

Sorry I didn't mean to worry you, just one (maybe) answer for your high B12 (with you taking no supplements) there could be many reasons for having elevated levels & really does need to be looked into by your GP....

I noticed in another question you asked, you noted a few symptoms...I'm going to list just a few symptoms Of B12 deficiency below: I don't want to worry or scare you because lack of B12 symptoms can mimic a lot of other conditions & vice versus.

Fatigue

pale skin

Muscle aches & Pains

Mental fogginess

sore enlarged red beefy tongue

easy bruising or bleeding, including bleeding gums

stomach upset and weight loss

diarrhea or constipation

Altered sleep patterns

If the deficiency is not diagnosed at the early stages, it can damage the nerve cells & symptoms can worsen

tingling or numbness in fingers and toes

difficulty walking

mood changes or depression

memory loss, disorientation, and dementia.

Looking back I had very few of them, but the episodes of Dermatitis & cysts I used to get (was in hospital having one drained when blood tests found low B12 levels) stopped when I started treatment, have never had a problem with dermatitis & very rarely get a cyst, (only when my immune system is run down)

Please dont worry unduly, but make the doctor aware that you are not going to be fobbed off ...with the NFA required attitude.....if we don't make a fuss we don't get anywhere

Regards

Loopy

[Hidden in reply to Loopybird]

My son has low ferritin and elevated B12 and folate, and I've been considering the same issues for him. I was reading about MTHFR gene mutations on mthfr.net, and about blockages in the methylation pathways, as he has a lot of the symptoms of B12 deficiency - wired and tired, constipation, loss of balance, bleeding gums, weight loss and no appetite. He's only 2 and a half and he has little energy to do anything and yet he struggles to get to sleep - lying in his bed for hours on end, until he can fall asleep. He's also had digestive problems since birth, was born 9 weeks premature, and I've recently been diagnosed as having central hypothyroidism. His father also has a series of classic B12 deficiency issues too (although still untested and in denial about his health issues).

[thyroidgriffin in reply to Hidden]

I was just tested for MTHFR and was found to have 2 mutations..dble recessive gene one from ea parent...this was done by dr stephanie cave in usa...dont think she has website...but she prescribes methly assist for me...have not gotten it yet will soon n post results..she felt it makes me not able to process toxins n handle allergies to mold,mercury fillings rtc.

I think it is valid as my sister is pribly dble mutated gene allergies like me, n other sister smokes n is not allergic or bothered by mold or anything....smells bother me n I cant sleep like yr son...she will not give the methyl assist unless get the MTHFR test first bec if not have mutation then taking it can make u sick

[Hidden in reply to thyroidgriffin]

Thank you. I'm in NZ so just trying to figure out how I could get him safely tested (as of course, I don't want to subject him to needless bloodletting... ) But then, I know the potentially life threatening consequences of a B12 deficiency too... I've read that elevated levels of homocysteine is a sure sign too, so perhaps if I can't get him tested for the MTHFR gene here, that might be one route to explore...

Keen to hear how you go though.

[QUE6T-33 in reply to Loopybird]

That's interesting Loopy. Isn't there an active B12 test available ?

[auldreekie]

Your ferritin in too low - that along with the abnormal B12 should be looked at -latest report in BMJ says women with ferritin of less than 50 should be taking iron supplements, your B12 can't be used properly if iron is low.

extract

We found a significant response only in the patients with a baseline serum ferritin concentration = 50 µg/l. This suggests that iron deficiency could be present even with a “normal” concentration of serum ferritin. Indeed, the lower limit for serum ferritin concentration is controversial: iron stores in the bone marrow may serve as a better indicator of iron deficiency.19 One study compared serum ferritin concentrations with iron stores in the bone marrow and found that a serum ferritin concentration of 50 µg/l was associated with a 50% chance of iron deficiency occurring in the bone marrow.20 The lower reference limits for serum ferritin and haemoglobin concentrations have been considered too low for women.21 The authors of that study advocate the adoption of the same reference values for both men and women that “would be expected to have fundamental and positive implications for women's health and welfare.” Our study indirectly supports their conclusion by showing that women can benefit from iron supplementation even if their red blood cell counts are considered normal.

b12 discussion below

youtube.com/watch?v=BvEizyp...(Not working as expected?)

[auldreekie]

bmj.com/content/326/7399/1124

full BMJ article

[hooper]

Thank you auldreekie, I have plenty to say to the doctor - when I can get an appointment!

[Hidden]

I have just had my B12, ferritin etc tested. My B12 was just a little higher than your result (same ref range too). I subsequently read that taking another B supplement - I take B Complex can make the B12 reading high. I shall stop taking the B complex when my supply is exhausted.

From my experience with other blood tests, GPs do not take action unless told to do so by Lab. When I have had tests which Lab considered needed further investigation they wrote this on test results for GP action. Further blood test to ascertain possible causes and even referrral to specialist! I was astonished at the Lab doing this and it appears in my area, all tests outside of range are reviewed by Senior Lab Staff!

[hooper in reply to Hidden]

Hi Holby, thank you for your intput. Have you seen your GP about your high B12 levels? I couldn't get an appointment with mine today, had to have a phone call instead. He seemed not the least bit bothered about it! It took a lot of persuading to get him to up my thyroxine from 75mcg to 100mcg, but with a TSH over 1 and nearly double my reading 6 months ago, I wasn't going to let it go. For a rather low vit D he told me to eat more calcium containing food (no supplements forthcoming) and to book for more blood tests in a month for B12, full blood count and TSH.

I know what you mean about the Labs - as you can see they told my doctor "No further action" on all of them! He wasn't even aware I'd had any blood tests (it was another doctor in the practice who ordered them on my behalf) and if the receptionist had had her way I wouldn't have known anything about it at all - It's MY body for G-d's sake!

If you do see your doctor would you let me know how you get on?

Jen x

[Hidden]

Hello hooper,

I did discuss with GP - made a specific appointment. GP said it was not considered high and only rare conditions cause elevation (liver and leukemia) and full blood count would indicate problems. Also that a lot of our food is fortified with B12 (cereals etc) and there were no studies showing negative effects of it being high. Apparently, excess intake is secreted and further, lab tests re B12 are not very accurate! I am now watching my supplements as I take Multi Vitamins with minerals, Garlic, Selenium (this is highly recommended for autoimmune thyroiditis/hashis (with multi nodular goiter), plant sterols, B12, B Complex and Cod Liver Oil. I take VitD with calcium every second day but will stop these following recent studies which indicate they can cause heart problems. I also intend stopping the B Complex and Cod Liver Oil and perhaps take a Lycopene instead.

I have 6 monthly blood tests and always retain a copy. I look forward to them being available on line when this is introduced nationwide. New receptionists are a nightmare and it is tiring having to battle with them for copies. I am taking a firm line with them all and when I visit the surgery for copies of tests, I write a formal letter requesting a copy of the blood test taken on....iaw Data Protection Act Section ......etc. Since putting request in writing they give me reports without hassle. I feel the NHS does not like us taking control of our health and I will not accept the nannying patronising attititude that I see others accept. I am politie but do have a brain and can do research!!!

My TSH is .88 mu/L (.35 - 4.94)and I do not take medication and feel OK. Goiter is growing but manageable but I cannot reduce peroxidase antibodies which are attacking my thyroid. Hope this helps somewhat......