Vitamin B12 Results

[Pascha1]

My Vit B12 results are 398 range 187 -883

Could this be improved or are they ok at this number ?

[shaws Administrator]

Advice from the P.A. Society is that B12 should be towards 1,000 in order to try to prevent dementia/alz.

You can purchase methylcobalamin B12 sublingual tablets from Amazon as most health shops/chemists don't hold a stock of these.

They dissolve under the tongue and go into our bloodstream.

If you order anything from Amazon, if you use our Affiliate Thyroiduk.org.uk get a small amount to help defray their expenses.

thyroiduk.org.uk/tuk/go_sho...

[Pascha1 in reply to shaws]

thank you, i will get some NHS is getting worse with giving us stuff we need to keep well

[Gambit62 in reply to shaws]

shaws, sorry but bit surprised that you say PAS advice that B12 should be towards 1000 - not aware of this and a bit alarmed by it to be honest. To my knowledge the PAS has not and would not make any such statement though it may have cropped up on the PAS forum on health unlocked.

1000 is the average point at which people who are being treated for B12 deficiency with injections report that they need to keep their levels to feel healthy. I believe that Sally Pachalock mentions it in relation to discussions of elderly patients and dementia who are, again, being treated for B12 absorption problems but it certainly isn't general advice that I've seen given to the general public. 1000 (ng/L or pmol/L?) is either towards or above the top of the normal range so the vast majority of people really don't need levels anywhere near that high to function properly.

Unfortunately treatment with injections has a fundamental impact on the way serum B12 levels relate to how much is getting through to cells so means that normal range really doesn't apply and the serum B12 test becomes pretty useless at that point as a guide to what is going on with B12.

So far the latest studies on B12 and dementia imply that B12 only helps where B12 deficiency is the mechanism that is causing B12 deficiency.

[shaws Administrator in reply to Gambit62]

I listened to a P.A. meeting in which the Professor stated that we had to be careful if we have P.A. or low B12, particularly if homocysteine levels rise as it is homocysteine which shrinks our brains and can lead to dementia/alzeimers and B12 lowers homocysteine levels.

I shall add Marz into this as she might want to add something too.

[Marz in reply to shaws]

Just that I think we Hypos/Hypers need higher levels as we possibly use more. Polaris also makes good points on the topic. Having lived with a level of 300 + for many years - and which would have been declared adequate on the PAS forum - I live with the consequences of nerve damage in my spine. Weekly injections of B12 have relieved the pain for a better quality of life. We are individuals. Do not have a clue what my level is as I go by how I feel and when my balance goes I know it is time for another injection.

If it is symptoms that are more important than lab levels then why do we need to be concerned. Daily we see so many VERY LOW levels of B12 - along with Folate - Ferritin and VitD on the Thyroid Forum - that I do not think it hurts to mention higher levels are needed - especially to newbies - because as often happens - they are rarely met. It is rather like aiming for perfection when we will only ever make second best. If we aim for second best then we end up with third Most Hypos have low acid making the uptake of Vitamins and Minerals difficult.

Maybe it is difficult for some people to understand that this Forum functions well with personal experiences and helping each other to find wellness.

hypothyroidmom.com/10-nutri...

The above link was posted on the PAS Forum recently .....

Usually Homocysteine is raised when B12 is low at a cellular level - along with MMA.

I read of many posts on the PAS Forum where a member has obvious Hypo signs and yet when asked - first they say all is normal and then after further questioning we learn only the TSH has been tested - well that shows diddly squat - but impossible to get through what is really needed. So I guess it is annoying for all of us when we have a little knowledge - or big - in our field of interest and yet cannot get the point over.

Perhaps we are all elderly with dementia on Thyroid UK

[Polaris in reply to Marz]

As you've just illustrated Marz, I agree that serum B12 test results seem less relevant as many people have skewed results from already supplementing and more and more research is revealing connections between autoimmune diseases. It seems even more important then to look at history and symptoms (as advised by BMJ latest research doc) and to find the root cause. GPs are less inclined to do this now and usually just treat one particular symptom without looking at the overall picture.

journal.frontiersin.org/art...

(This very relevant link was first posted by Diogenes on this forum earlier this year)

"An increased association of PA with other autoimmune diseases, such as type 1 diabetes (3%-4%)[39], vitiligo (2%-8%)[3], and in particular, ATD (3%-32%)[40] has been reported. Among our unpublished series of 177 PA patients, 41% had associated ATD and 10% presented with vitiligo or alopecia, which indicates that a subgroup of PA patients can be considered as having a type II autoimmune polyendocrine syndrome. In a recent study, we have observed that ABG and ATD occur in a closely linked fashion, with ATD being present in about 40% of ABG patients[41]. These data suggest that, in patients with autoimmune disorders, in particular ATD, a possible association with PA should be suspected and excluded."

ncbi.nlm.nih.gov/pmc/articl...

Another very complicated link posted by KimberinUS on the PA forum recently:

The findings in the above link highlighted an increased association of PA with other autoimmune diseases, such as type 1 diabetes, vitiligo and in particular, Autoimmune Thyroid Disease . Atrophic Gastritis and autoimmune thyroid disease are closely linked with ATD being present in about 40% of ABG patients[41].

"The diagnosis of concomitant autoimmune thyroiditis and PA may have an important clinical implication, in particular, in those patients who require replacement therapy with thyroxine. Recently, it has been reported that patients with impaired acid secretion may present with thyroxine malabsorption that requires an increased dose of the drug[42], and in patients with PA, associated hypochlorhydria is always present, due to the loss of oxyntic mucosa[4]."

"CONCLUSION

"PA is an often silent and under-diagnosed autoimmune disease, because its onset and progression are very slow and patients may become used to their complaints. Nevertheless, the clinical consequences of undiagnosed PA may be serious, including gastric neoplastic lesions. Thus, gastroenterologists should increase their awareness of this disorder, whose definite histological diagnosis may be preceded by reliable noninvasive serological screening."

journal.frontiersin.org/art...

[Marz in reply to Polaris]

So do you think it is OK to say folk need higher/good levels of B12 in order to improve health or is it wrong. I always think - we have to start somewhere ....

Thank you for your response - must read it again !

[Polaris in reply to Marz]

Personally, yes I think high levels are beneficial but can understand that the complexity of PA/B12 def, with no gold standard test, insufficient knowledge by the medical profession and the way the system operates, supplementing before diagnosis will make it much harder to eventually get a diagnosis and treatment, which is why I self inject - but this is not an option for many.

Sally Pacholok and Prof David Smith (as you know - frontline practitioners) both consider the levels should be raised to 500, and 1000 for people over 60 as diminishing hydrochloric acid makes us much more vulnerable to B12 def. as well as other essential nutrient deficiencies.

Sally Pacholok makes a very good point that, a trial of B12 injections is very cheap to the state compared to other expensive drugs and referrals - not to mention the eventual cost to health of patients and families of those with dementia.....

[Pamela0106]

Mine is 187 on the nose and my doctor says that's absolutely fine! Because it's "in range" ..., by the skin of its feeth!!! Funny how I don't feel fine 😡 .... grrr!

[Pascha1 in reply to Pamela0106]

I feel like c**p and nails will not grow, ache all over , hair thin and lifeless but i suppose could be a mixture of everything not being the high end of things.

[shaws Administrator in reply to Pamela0106]

Do you mean your B12 is 187 ????? Pamela0106

[Pamela0106 in reply to shaws]

Yep. B12 187. My doctor's range is 180-900 and she thinks that's just fine as it's in range!

[shaws Administrator in reply to Pamela0106]

Go onto the Pernicious Anaemia Forum and ask their advice. My mother died through neglect of her treatment - she had P.A. Many of us supplement our injections with sublingual methylcobalamin B12 and excess is excreted. There's the possibility of neurological problems and nerve damage.

Before all that, I think you should ask your doctor to test your intrinsic factor. It is necessary for the absorption of B12 and if we have an intrinsic factor we have pernicious anaemia and need injections for life.

You can say you've been advised to have the test.

[Gambit62 in reply to Pamela0106]

please take a look at the PAS forum - may be able to help you with getting GP to recognise how risky just taking serum B12 as a single measure is.

healthunlocked.com/pasoc

[shaws Administrator in reply to Gambit62]

My mother died of stomach cancer as her B12 injections were stopped as the doctor told her ' your bloods are fine and you don't need any more injections'. After 25 years of injections.

My sister and I thought this was good news..............little did we know. I also have PA. My sister died five months ago, which I believe was due to low levels of B12 - very rarely I think do they even test people of a certain age for B12 deficiencies and/or any others.

[Polaris in reply to shaws]

That must have been devastating - I 'm so very sorry that happened to your mother and sister, Shaw's.....

My sister (Hashimoto's, vegetarian- practically veganwith many allergies) was misdiagnosed for years with ME and eventually dementia, before we belatedly recognised neurological symptoms of severe B12 deficiency.

Unfortunately, after a long battle to get injections, although physical symptoms improved and she was able to walk again, treatment was still inadequate. The surgery then stopped injections altogether when hallucinations increased and they would only give antipsychotic drug, ignoring all still obvious neurological and physical symptoms of severe B12 deficiency.

The inadequacies of diagnosis and treatment of PA/B12def. Is a complete scandal,