Vit B12 levels: I’m on 100 mcg Levothyroxine and... - Thyroid UK

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Vit B12 levels

Jogloryanne profile image
24 Replies

I’m on 100 mcg Levothyroxine and my THS level is 0.91, I have been feeling good apart from a few niggles.

My Vit B12 is 590ng/l (180-2000 ), I’ve started supplementing for other reasons but can anyone tell me is this level low and what ideally should it be?

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Jogloryanne
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SeasideSusie profile image
SeasideSusieRemembering

Jogloryanne

My Vit B12 is 590ng/l (180-2000 ), I’ve started supplementing for other reasons but can anyone tell me is this level low and what ideally should it be?

ng/L is the same as pg/ml

According to an extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

If you are supplementing with B12 (which is recommended to be methylcobalamin rather than cyanocobalamin) then it's advised to also take a good quality, bioavailable B Complex as well in order to keep all the B vitamins in balance.

Jogloryanne profile image
Jogloryanne in reply to SeasideSusie

Yes I also take a B complex.

Thank you for the information, I’m feeling better already from taking it. My GP told me my B12 levels were fine.

SeasideSusie profile image
SeasideSusieRemembering in reply to Jogloryanne

Yes, they're "fine" because they're within the range, he'd say they were fine if the result was 200, but we don't expect GPs to understand about "optimal"!

Jogloryanne profile image
Jogloryanne in reply to SeasideSusie

Yes, it was a battle to get my Levothyroxine dose increased, my THS had been over 3 for years and I felt unwell.

Mhymer profile image
Mhymer in reply to SeasideSusie

I’m you are mentioning this about vitamin B12 because I got my results back from the doctors and they are 243 (150-750) and because they are in range nothing has been said from the doctors, I wonder if this is why I’m so tired and my brain fog is really bad 😔

SeasideSusie profile image
SeasideSusieRemembering in reply to Mhymer

Mhymer

I see you have Graves and have had RAI.

Are you on Levothyroxine?

Brain fog and fatigue are symptoms of hypothyroidism and if on Levo you could be undermedicated.

What are your current results for TSH, FT4 and FT3?

Were Vit D, Folate and Ferritin also tested?

You can check for signs and symptoms of B12 deficiency here:

b12deficiency.info/signs-an...

b12d.org/submit/document?id=46

Mhymer profile image
Mhymer in reply to SeasideSusie

Hi, yeah I’m on 50 levothyroxine, my TSH was 357 and the ferritin was 81, I spoke to my consultant over 3 weeks ago and she wants me to be on 75 of levothyroxine , and I’m still waiting for my doctors to change it , mind they think it was in range because my bloods were taken two weeks before I see my endo.

SeasideSusie profile image
SeasideSusieRemembering in reply to Mhymer

Mhymer

TSH was 357 with your latest test ande your doctor hasn't yet changed your dose? Someone needs to get their finger out. If that is your latest TSH result then you are very hypothyroid and no wonder you have brain fog and fatigue.

shaws profile image
shawsAdministrator in reply to Mhymer

You must have a check for Pernicious Anaemia (B12 deficiency) before supplementing and your GP should do so.

Ellie-Louise profile image
Ellie-Louise in reply to SeasideSusie

Why is one type recommended over the other please.I thought I was using a good one it being by Solgar, but I have just checked the bottle after reading your reply and it is B12 cyanocobalamin. Should I look for the other type instead?

SeasideSusie profile image
SeasideSusieRemembering in reply to Ellie-Louise

Ellie-Louise

Methylcobalamin is the naturally occurring form of Vitamin B12 and is found in food. It's said to be the most bioavailable form so doesn't need your body to convert it to be able to use it.

Cyanocobalamin is a cheaper, synthetic form and has to be converted into one of the two active forms - methylcobalamin and adenosylcobalamin.

healthline.com/nutrition/me...

There is one supplement that I used to use that contains both the active forms

cytoplan.co.uk/vitamin-b12-...

shaws profile image
shawsAdministrator

You shouldn't start to supplement with B12 until you have a blood test to exclude that you do not have pernicious anaemia - another autoimmune deficiency which must be treated with regular B12 injections.

Jogloryanne profile image
Jogloryanne in reply to shaws

I’m confused now. I started to take B12 to help with overheating, it’s working as I’m now sleeping through the night and not waking due to overheating.

I have an appointment with my GP tomorrow morning as I’ve got pain in my neck and thyroid, awaiting blood test results.

What should I be asking re B12 and pernicious anaemia?

shaws profile image
shawsAdministrator in reply to Jogloryanne

Just request a test for Pernicious Anaemia. Your GP should be aware of why you're asking.

I am not medically qualified but would think that if you are already supplementing with B12 that your bloods will not be accurate.

PointOfReference profile image
PointOfReference in reply to shaws

It may be difficult to request this as the levels are normal. Usually PA is investigated when there's a deficiency present.

Was the 590 test result before you tool any supplements?

Jogloryanne profile image
Jogloryanne in reply to PointOfReference

Yes before I took any

PointOfReference profile image
PointOfReference in reply to Jogloryanne

Then youre very likely OK

Are they oral, digestible tablets?

If you feel they aren't working after 6 weeks, then return to the Drs for a second test and PA investigation

Jogloryanne profile image
Jogloryanne in reply to PointOfReference

Yes oral and I’m already feeling the benefits

Lunario profile image
Lunario

Your doctor should know that a negative test for PA does not rule out that.

Nearly all B12 related questions will be answered by the friendly and helpful people in the forum of the Pernicious Anemia Society Group (healthunlocked.com/pasoc).

Jogloryanne profile image
Jogloryanne in reply to Lunario

Thank you, I’ll have a look

shaws profile image
shawsAdministrator

You should not take B12 supplements If you have low B12 as your doctor should first test you to exclude that you do not have Pernicious Anaemia.

I have several autoimmune diseases and P.A. was the first one.

holyshedballs profile image
holyshedballs

GPs and CCGs usually use the guidelines from the British Society for Haematology. But the BSH say The clinical picture is the most important factor in assessing the significance of test results assessing cobalamin status because there is no ‘gold standard’ test to define deficiency. onlinelibrary.wiley.com/doi...

So we are up against the reference range tyranny. to help paint the clinical picture NICE can back us up. This page on the NICE website nice.org.uk/advice/mib40/ch...

says that Vit B12 deficiency is often associated with myxoedema.

It also says that There is uncertainty about the prevalence and incidence of vitamin B12 deficiency. This is partly because there is no established single measure of vitamin B12 deficiency or accepted definition of what constitutes a deficiency

nice.org.uk/guidance/mib40/...

Its a hard struggle but my advice is to take these documents and say that the doctor has to look at the full clinical picture, including hypothyroidism, provide advice based on the clinical picture and trial a course of Intra Muscular (IM) Vitamin B12. It's going to be difficult and you ll need to download and print out evidence to show the doctor.

the doctor will no doubt say they have to follow guidance and the guidance says that a B12 test within the reference range means no Vitamin B12.

I'm going through this struggle myself so ill share my arguments and progress with the group.

Litatamon profile image
Litatamon

Hi,

The chances of you having Pernicious Anemia are slim to none. Not saying not to check things out of course, simply giving my opinion that it is not likely.

Why?

Your levels are fine.

And you react to oral supplementation very quickly. That does not happen with Pernicious Anemia.

I would check in a year again, or six months if your symptoms remain, and see if your levels are relatively the same or higher - due to your supplementation. If they are a lot lower, that would be a sign of something to investigate.

All the best to you.

Jogloryanne profile image
Jogloryanne in reply to Litatamon

Thank you, I saw my Gp today and she said supplementing with B12 is fine. I’ve got an appointment for a scan and a referral to endocrinologist without asking.

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