New to site and wondering if I'm going slightly nutty 🙄

[IOWJO]

Hi 👋

Was wondering if my story sounds similar as anyone's here ! For a year now I have been suffering with dizziness , balance issues, tingling limbs, lost of taste, fatigue and sores in mouth. My doctors and neurologist keeps sending me for tests for MS all so far negative thankfully or vestibular neuritis ( been doing some very weird balance exercises for 7months lol) which has helped a little bit. Just had a private blood test as gp would not repeat my vit B12 test as it was 267 6months ago and tells me it's normal folate was 20.5. Private test has shown my vit B12 is now 214, they have told me it's normal and will not offer me treatment grrrrrrr. I just feel it would be worth a try to see if this is the problem but seem to be hitting a brick wall. Is it like this every where in the uk. Even thinking about buying injections myself but don't know where to start. Thank you for listening 💕

[clivealive Forum Support]

Hi IOWJO what were the ranges <From -- To> shown against the B12 levels of 267 six months ago and 214 more recently and were the measurements the same e.g. pg/mL ?

If the same ranges and measurements were used for both tests your levels have deteriorated during the six months and the reason for that needs to be investigated.

Anyone at any age, can become B12 deficient. However, certain people are at an elevated risk. They include the following:

Vegetarians, vegans and people eating macrobiotic diets.

People aged sixty and over

People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).

People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications, or infections such as h-pylori that can interfere with B12 absorption.

People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.

People with a history of eating disorders (anorexia or bulimia).

People with a history of alcoholism.

People with a family history of pernicious anaemia.

People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).

People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), Pancreatic insufficiency, or any other disease that cause malabsorption of nutrients.

People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.

Women with a history of infertility or multiple miscarriages.

Do you "see yourself" among any of the above people?

I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 46 years.

I wish you well.

[IOWJO in reply to clivealive]

Hi Clivealive thank you for your reply 😊

I'm not in any of those groups, my first blood test was measured pg/ml but the second one I won't know till they send it through tomorrow. I didn't even know there were different measurements which shows what a novice I am at this lol.

Best wishes

[wedgewood in reply to IOWJO]

Symptoms should be treated , not numbers . Up to 80% of the B12 serum results measured can be inactive B12 that your body cannot use..Doctors seem to be totally ignorant of this fact . I don’t know how to find a medical reference about this for you to show your GP . Don’t know if this would help you anyhow .

Perhaps someone out there knows of this reference ?

[IOWJO in reply to wedgewood]

Thank you for replying Wedgewood 😊

[Gambit62 Administrator in reply to wedgewood]

wedgewood - whilst it is true that on average 80% of B12 in blood is 'inactive' the active B12 can be measured through the active B12 test and the range for that reflects this.

There are a number of problems with serum B12 test - first the normal range is enormous and there is no guarantee that a particular point in the test is right for the individual being tested. Secondly it is measuring the amount in your blood rather than what is happening in your cell. It is also only accurate by about 20% meaning that performing the test several times on the same sample would give results that varied by 20%.

B12 can be useful for showing that you have an absorption problem - meaning that the results show a significant drop (>20% over time). Unfortunately the results above would appear to be within this window so not conclusive. That doesn't mean that B12 isn't involved just that the tests don't prove things either way.

Unfortunately the symptoms of B12 deficiency overlap with a large number of other conditions.

[wedgewood in reply to Gambit62]

I think that most people who get a B12 test get the serum test, not the active B12 test .

[Gambit62 Administrator in reply to wedgewood]

thanks Wedgewood. The point I was trying to make is that, to some extent the normal range takes into account the fact that i general 20% of B12 is active.

[wedgewood in reply to Gambit62]

Thanks for clarification Gambit 62. I always appreciate your input . You are a great administrator . We are lucky to have you .

[Dragonwalker in reply to clivealive]

Thank you. I fit 6 of those! 😢

[fbirder]

I presume your neurologist has carried out nerve conduction studies to look at your neuropathy, along with other tests. There are dozens and dozens of possible causes for your symptoms, B12 being just one of them. Many of those causes could be ruled out by the results of the neurologist's tests. Try writing to them asking them to explain why they don't think it can be caused by B12 being as the serum B12 test isn't a reliable indicator of a deficiency.

My neurologist did various blood tests on me, including methylmalonic acid and homocysteine. These are two of the biochemicals used up in reactions mediated by B12. If there's not enough getting into the cells then one or both of those will be raised.

If, as is likely, your private B12 test used units of pmol/L then that will translate to about 285 pg/mL - almost identical to your previous test. You could always get an MMA test done privately.

[IOWJO in reply to fbirder]

Thank you for your replies, I've just come back from the hospital now after having evoked potential tests so will wait to hear about results from them. Also will have a chat with my neurologist about vit B12 and see what his advise is on any further blood tests. Hopefully will get some answers soon.