High Active B12 Flagged - Please Advise Newbie

[Hyburn]

Had my Active B12 checked along with my thyroid function tests by MediChecks and was surprised it was flagged as high. Was advised to decrease dose of any supplement I was taking. At the time was taking Visionace as felt my eyesight, esp night vision, had deteriorated. It contains 9ug of B12 which it says is 360% of RDA.

On 27 July Active B12 was:

194.8 pmol/L Range (25.10 - 165)

Was advised to have full blood count, liver & kidney function done to asses if this was significant which I did. Report on FBC said I had normal red, white and clotting cells and that this meant previous B12 result was unlikely to be significant.

Liver and kidney function subsequently found to be 'completely normal showing no indication of disease or inflammation'.

Sodium was 143.3 nmol/L Range 135.00 - 145.00

Uric acid 363 umol/L Range 175 - 363

I have had Hashimoto's Disease for circa 35 years and am now hypothyroid. Am on T3 and Eltroxin but dosage is still not optimal. Am waiting on endoscopy for coeliac disease as my sister has it and I have had IBS for more than 35 years following gall bladder removal. Have tingling and numbness in fingers and toes from time to time, no half moons on fingernails, except thumbs, memory issues, fatigue, crampy legs at night (take magnesium for that), tight leg muscles, sensitivity to noise and bright light, bleeding gums, impaired vision (hence the Visionace), irritability, shortness of breath (have asthma), frequent need to urinate, diarrohea, vertigo/fear of heights.

I don't smoke or drink to excess and I have a good varied diet with plenty of veg. I am gluten free. Am not taking any of the meds which affect B12. My sleep cycle is all to pot - am up half the night as not tired but often conk out watching tv. My Vit D was very low and am on supplements from GP for that. Has not come up that much was 26 now 58 nmol/L in circa nine months - was not given a loading dose.

Subsequent test on 10 Sept 2017:

Active B12 159 pmol/L Range 25.10 - 165

Folate (serum) 5.1 ug/L Range 2.91 - 50.00

25 OH Vit D 58 nmol/L Range 50.00 - 200.00

Advice appreciated. TIA.

[fbirder]

It looks as if they've tested everything that needs to be tested and all is good. So I wouldn't worry about the active B12 being a little high.

[clivealive Forum Support in reply to fbirder]

Would you suggest Hyburn supplements with folic acid or is 5.1 ug/L high enough?

[Hyburn in reply to clivealive]

I think my folate is on the low side. I believe I do have absorption issues as I am on a large dose of thyroid meds but my numbers are not optimal. My Vit D is still are still at the very bottom of the reference range despite taking supplements for circa 9 months now. This, IBS and family history is why I am now being investigated for coeliac disease.

I do have a genetic abnormality on the DIO2 gene which means I have difficulty converting T4 to T3.

Someone on the TUK site suggested posting here for advice.

[Gambit62 Administrator]

Hyburn - would suggest that you stop taking the supplement - you don't need that much B12 unless you have an absorption problem and the evidence is that you don't have an absorption problem, so taking it is resulting in your B12 levels rising.

Did your symptoms come on before or after you started using the supplement. Some people can respond badly to high serum B12 levels - probably a reaction that shuts down the mechanism that allows your B12 to move from blood to cells where it is needed - leading to a 'functional' B12 deficiency.

You have been tested for the obvious nasties that can raise B12 levels - other than that some people just do have levels over the range.

Also, if you are taking biotin - that can give false highs for B12 and also for some thyroid tests - meaning that the result isn't accurate

[Gambit62 Administrator]

taking 3.5 x RDA so certainly more than is needed and could accumulate over time.

[Frodo in reply to Gambit62]

Could I just chip in and ask, Gambit, re: "accumulate over time" I previously understood that excess B12 was excreted and did not accumulate over time, and that is one of the reasons it is safe?

[Gambit62 Administrator in reply to Frodo]

yes, I know that gets quoted a lot.

the reason B12 is safe is because it doesn't have any known toxicity.

Removing excess takes time and the rate at which it happens varies from person to person (and also depends on the level of B12 in the blood). The removal rate is much lower at low levels. The reaction to high serum B12 that occurs in some people also, according to one study I read, seems to slow down this process.

Removal in people who have injections is quite high after the dose because the levels are really high.

The position is going to be much more difficult to balance if you are talking about lower levels.

[Frodo in reply to Gambit62]

Thank you Gambit. Not sure of the implications of this. Is the high level a problem, other than the possible triggering of the autoimmune response? We don't know how prevalent the auto immune response is, presumably, or whether it can be reversed?

Do you have a link to any research/info/source material about removing excess, and the study you mention, as am now working with my GP on this to a greater extent, again, thanks if so.

Personally if I have weekly injections the effect wears off after 4-5 days but Idk if that means the levels have considerably dropped or what is going on, really.

[Gambit62 Administrator in reply to Frodo]

I don't think anyone has really done studies on removal of low level B12 and there isn't anything large scale on functional B12 deficiency and the incidence of TC11 antibodies in high serum B12 patients - though the small scale studies that I am aware off seem to show rates of about 1/3.

Apologies but I am really struggling at the moment with some thyroid issues which are leaving me very tired and not a little cranky as a result. I've posted a couple of times responses on functional B12 deficiency with links to some studies in the past 2-3 days so suggest you look back through posts for the last few days to find them.

[Frodo in reply to Gambit62]

No problem. I don't remember seeing your other posts so thanks for the heads-up.

So sorry you're having issues. All the best and hope it gets sorted asap.

Thanks as always for your help and support.

[Astridnova in reply to Gambit62]

How does it accumulate when it is water soluble and excreted as urine?

[Gambit62 Administrator in reply to Astridnova]

I think that has been covered in my responses to Frodo above. there are lots of things that are water soluble that accumulate in blood. if the rate at which you are putting anythingin is greater than the rate at which it is removed then the levels will build up

[Astridnova in reply to Gambit62]

I am going by this statement, "Vitamin B12 is not carcinogenic, teratogenic, or mutagenic. It is considered safe even at 1,000 times the RDA." Source: Baik and Russell, 1999, cited by the American Center for Disease Control, cdc.gov/ncbddd/b12/patients...

Unfortunately the article is no longer there. But, I have found another statement on the Center for Disease Control site:

"No adverse effects have been associated with excess vitamin B12 intake from food or supplements in healthy individuals, and no UL has been set."

Source: Institute of Medicine, 1998. Dietary Reference Intakes for Thiamin, Riboflavin, Niacin, Vitamin B6, Folate, Vitamin B12, Pantothenic Acid, Biotin, and Choline. Washington, DC: National Academy Press, cited by Institute of Medicine, Food and Nutrition Board. Dietary reference intakes for vitamin C, vitamin E, selenium, and carotenoids. Washington, D.C.: National Academy Press; 2000, cited in 2nd National Report on Biochemical Indicators of Diet and Nutrition in the U.S. Population, p.16, cdc.gov/nutritionreport/pdf....

[Gambit62 Administrator in reply to Astridnova]

agree that B12 isn't toxic

this is an article on functional B12 deficeincy

academic.oup.com/qjmed/arti...

Contrary to vitamin B12 deficiency, the pathophysiology and clinical consequences of high serum cobalamin have, until now, been very little studied. It is however currently considered that an increase in plasma levels of vitamin B12 may be an indicator of a functional deficit with clinical consequences paradoxically similar to those of vitamin B12 deficiency. Indeed, an increase in the binding of vitamin B12 to HCs, secondary to an elevation in their plasma levels (especially for TCB I and III which are by far the majority), leads to a potential decline in its attachment to TCB II and therefore alters its delivery to the cells. Thus, a functional deficit in vitamin B12 with an increase in homocysteine and/or methylmalonic acid levels can occur, even though the initial anomaly in this instance is not a deficiency in vitamin B12.

[Gambit62 Administrator]

Eaoz, the does that Hyburn is on top of dietary B12 - it also appears to be having an effect on their serum B12 levels (evidence that there isn't an absorption problem) so at best its a waste of money/unnecessary.

I doubt that Hyburn enjoys taking a tablet as much as you enjoy your shellfish ... and assuming you have an absorption problem then you aren't going to be absorbing much more than a small fraction of the amount that is in the shellfish.

[Gambit62 Administrator]

in which case take a supplement that only has those vitamins that really are needed. The only vitamins mentioned in the post are Folate and D. These are in the supplement but so are a lot of other things that may also be unnecessary.

[Galixie]

This is a little off topic but you mentioned that you are waiting to have an endoscopy done for celiac and you also mentioned that you are currently gluten free. An endoscopy would be looking for intestinal villi damage. That damage would only be present if you have celiac and are consuming gluten containing foods. If you stay on a gluten free diet, the endoscopy would be a waste of time to have done.

[Hyburn in reply to Galixie]

I know. My dr is going to give me at least 6 weeks notice of the procedure so I can reintroduce gluten as per Coeliac UK advice.

[Hyburn]

This is what I was wondering. Is it too high paradoxically because I am not able to use it?

[KimberinUS]

In regards to testing high in uric acid, i believe folks with h pylori have higher uric acid than those without.

H pylori could be the cause or a contributor to causing Hasimotos.

thyroidpharmacist.com/artic...

H pylori took my B12 whereas yours is raised but we are each individuals and i may have had it for a very long time so all of my stores got used up and finally had b12 deficiency after a long time of infection.