How low is low?

[Murphysmum]

Hi, I’ve jumped over here for the thyroid forum!

Im in the process of getting my thyroid meds sorted but for the last 10 months or so I’ve been supplementing all my vits and mins to aid the efficiency of these.

My question to you B12 experts 😜 is how low do your levels have to be before you feel symptoms?

My B12 hasn’t got any higher than 481ng/l (180-2000), despite supplementing and my ferritin has remained low also, 27mcg/l (15-200mcg/l). My folate is mid range and increased slightly after supplementing.

My gp refuses to do any more blood tests as “I’m in range” but I can’t get them to accept I need these levels higher for my thyroid meds to work efficiently.

I just wondered if anyone else had managed to get any action taken despite “normal” bloods?

Ps, I have most of the symptoms of B12 deficiency but realise that some of these could be attributed to thyroid levels too. My thyroid bloods are pretty good now but still have symptoms 😉

TIA

[clivealive Forum Support]

Hi Murphysmum having thyroid problems may put you at a higher risk of developing a Vitamin B12 drficiency and your having supplemented with B12 will have skewed ant blood test results.

The British Society for Haematology guidelines say on the Diagnosis of B12 and Folate Deficiency "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment".

google.co.uk/url?sa=t&rct=j...

Make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

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

I wish you well.

[Gambit62 Administrator]

what were your levels before you started supplementing B12?

The body can be quite good at regulating B12 levels in blood - using stores in the liver. If you have a B12 absorption problem then the stores aren't accessable in the same way so levels start to fall, so if your levels were around 400-500 before you started then it may be that those are just the right levels for you. The vast majority of people will be perfectly okay at these levels, regardless of whether they have a thyroid problem.

Given the huge range in which people are healthy trying to use any precise value as a guide to when B12 levels are right is problematic. I'm not aware of anything that would really mean that people with thyroid problems really need higher B12 levels than the norm - just that there is a higher probability of developing a B12 absorption problem in people with thyroid problems ... and the exact mechanism for that aren't understood. As such falling serum B12 levels over time are a better guide to what is going on with absorption than a single measure at a single point in time.

Given that the symptoms of B12 deficiency overlap hugely with thyroid deficiency then it's quite difficult to know if your symptoms really are B12 deficiency or thyroid and your levels are actually quite good.