Is my Vitamin B12 level low? - Pernicious Anaemi...

Pernicious Anaemia Society

31,756 members22,884 posts

Is my Vitamin B12 level low?

19 Replies

Hi I'm new to this community but I've been with the Thyroid UK community since May 2013.

I am suffering from Hashimoto's but I've also had tests done to check for the following deficiencies:

Vitamin B12

Vitamin D

Folates

Ferritin

This is what has come back.

Vitamin B12 - 363 (180-900)

Vitamin D - 43.6 (>75)

Folates - 4.1 (4.6-18.7)

Ferritin - 22 (30-400)

Thanks for any help on the above.

Jo xxx

Read more about...
19 Replies
lucylocks profile image
lucylocks

Hi

My B12 was similar to yours in May this year, level 377. G.P. said as it was in range so they would not treat it.

I am also hypo so I started using a Vit B12 sublingual 2400iu daily.

My folate was also low but still in range, as yours is below range I think your G.P. should prescribe folate for you.

Your Vit D looks lowish, mine was 22 and again I used a Vit D sublingual 6000iu daily and got it up to 93 in September but I think the good summer we had helped too. I think Vit D needs to be over 70

Your ferritin is also below range and should be 80 to 90 for your thyroid meds to work.

As you may know all vitamins need to be optimal for hypo people so I think you need to supplement with all of the above.

I did feel better with supplementing but decided to stop the B12 so I could have the Active B12 test done at

St. Thomas. The result was 107 range 25 - 108, although I was happy about this I was also very puzzled as I was convinced it would be low. I did stop supplementing 8 weeks before the test so I thought it would have been out of my system.

My husband's level is 222 and although still in range his G.P. has agreed to give injections.

Your G.P. should prescribe the folate, and iron, they can prescribe Vit D but the one they gave me was not strong enough (only had 800iu ) so I bought the sublingual and I think you should supplement with B12.

Hope this helps browny

in reply to lucylocks

Hi Browny, thanks for your reply. :)

Yes, I had a similar issue with my GP too - she made no mention at all of my Vitamin B12 being low. I suppose, in her mind, as long as it was within range it wasn't worth worrying about.

GP said she didn't want to put me on folate meds as I was only a little below the normal range. She did however suggest I eat more greens. :o

She has also put me on Vitamin D meds to help with my Vitamin D levels. We did have a pretty good summer but I also went away abroad at the start of the year. I have no idea what my Vitamin D was then as I wasn't tested until this month for it!

With the ferritin levels, I've been on Spatone to help with this as I didn't get on very well with the Ferrous Fumerate the GP prescribed me. But yes, I will look into B12 supplements as long as they're affordable (I'm unemployed)

Thanks

Jo xxx

lucylocks profile image
lucylocks in reply to

Hi Jo

I really think the G.P. should have given you folate especially as you are below range, folate deficiency can give you very similar symptoms as B12 deficiency, but then again if you take folate it can masked the B12 symptoms without correcting them. As you are low end of range of B12 and having a folate deficient I would supplement with both.

B12 needs to be over 600 and folate in the top third of the range for your thyroid meds. to work properly.

Best Wishes browny

in reply to lucylocks

Hi Browny, thanks for your reply.

The next time I see the GP is the 27th January as a week before that I have my thyroid levels checked. I'll ask her then and see what she says.

Or is sooner better than later?

Thanks

Jo xxx

lucylocks profile image
lucylocks in reply to

Hi Jo

If you want to wait until after your thyroid results to discuss everything then with your G.P. you could try more foods with lots of folate as G.P. suggested, but I eat lots of greens and as I say my folate was low in range. The folic acid tablets are not expensive to buy so you could buy a pot and take until you see your G.P. then ask if they will then prescribe.

in reply to lucylocks

Hi Browny,

I have a lot going on with myself at the moment, as I am also low on Vitamin D as well as my high TSH at present. So I'll wait until my appointment with my GP as it's very unlikely I'll be able to see her much sooner than scheduled and look into taking more folate.

Thanks

Jo xxx

EllieA profile image
EllieA in reply to lucylocks

I'm on B12 injections every 8 weeks. My blood results rarely get up to 2, having done so twice in the last 7 or so years. I'm nearer to 1.65 on average, or thereabouts. Having read some of the posts here, it's no wonder I spend half my life asleep or unable to do anything except wish I could just crawl under the duvet. I don't feel 51, I feel 91. I'm concerned about seeing my Dr because she said I could only have the injections every 8 weeks instead of 12 'temporarily'. I can't imagine reverting to 12 weeks now, I feel vaguely normal - but very tired - for 5 weeks or so once the injection starts working.

Ellie x

lucylocks profile image
lucylocks in reply to EllieA

Hi EllieA,

this thread is four years old so it may be best if you submit a new post asking for advice as more members will see it and you will get more replies.

Good luck.

EllieA profile image
EllieA in reply to lucylocks

Thank you for your reply, I'll have a look into that in the morning :) x

lucylocks profile image
lucylocks in reply to EllieA

Just click on "what's your question" at top of the page to submit a post.

Are you in the U.K. or another Country as I do not understand your level.

EllieA profile image
EllieA in reply to lucylocks

HIya - sorry I thought this was a UK website. My B12 level has been 142 and lower, 180-1000 is normal range here. I'll see if I can find a UK site! Thank you and I wish you all good health.

lucylocks profile image
lucylocks in reply to EllieA

Hi Ellie,

you can post on this forum as Eaoz says it is an international forum but the majority of members are from U.K.

It does not matter where you are from you can post, but please submit any blood results you have with their levels and ranges.

Your original post confused me as I have never seen results as low as 1.65, this is why I asked where you were from as I thought it may be a different measurement from a different Country.

Please post here and you will get some excellent advice.

Good luck and.Best wishes.

johnbarriesmith profile image
johnbarriesmith

Being in range is no good , it needs to be towards top of the range , you have auto immune issues .

in reply to johnbarriesmith

Hi, yes. I must have autoimmune issues as the following have come back abnormal for blood test results:

Positive Anti-Nuclear Antibodies

High Anti-TPO Antibodies (Thyroid Peroxidase) - 41,000 (<34)

And the other results as above.

Thanks

Jo xxx

suki65 profile image
suki65

i was told my b12 was normal at 363 i have got my levels up to 600 and feel so much better this book is amazing and has helped

amazon.co.uk/Could-be-B12-E... 2 doctors are trying to get b12 levels raised i take 500ug 2 tablets a day and feel alot better

in reply to suki65

Thanks for the link Suki. I'm trying to save my money at present as I'm out of work (claiming JSA, however so I'm actively looking for work) but I will look to get this book.

Glad to hear it's helped you! Hopefully it'll help me!

Jo xxx

Hi Jo,

It can be difficult and expensive supplementing all these things yourself, so try working with your doctor in the first instance to see if you can convince them to help you.

B12 - the serum B12 test is not reliable. The test itself is flawed, it measures both active and inactive B12, and beyond that you could have plenty of B12 in your blood but very little getting through to the cells where it's needed. Basically, you can be deficient at any serum B12 level.

There are other tests available but not on the NHS. Active B12, MMA and homocysteine can be done at St Thomas' in London or posted to them. They cost £18, £96 and £40 respectively, and you need a GP referral letter (homocysteine has to be done on site, not posted). There seems to be a lot of people still coming back in the normal range for active B12, so I'm not sure if it has much more benefit over the serum B12 test. The other 2 tests are better but more expensive. More details here:

b12deficiency.info/testing....

You could explain to your GP the drawbacks of the serum B12 test, print off the UK NEQAS alert:

ukneqas-haematinics.org.uk/...

Tests your GP might be able to do are anti-intrinsic factor and anti-parietal cells, which are the antibodies found in Pernicious Anaemia. Have a look at the B12d.org symptom checklist, and bring along to your GP with the B12d.org Treatment Protocol:

b12d.org/b12-signs-symptoms...

b12d.org/sites/default/file...

Vitamin D - it's good the doctor has given you something for this, hopefully high strength D3? You definitely want to get this above 75nmol/L, the vitamin D council recommend a level of 50ng/mL which equates to 125nmol/L. Please check if they tested your calcium levels first though, because low vit D and high calcium can be a sign of hyperparathyroidism.

Folate - you are folate deficient and should ask your GP for a 5mg daily folic acid supplement on prescription. B12 and folate deficiency are usually found together, as they work together (along with iron) in the correct formation of red blood cells. If you do manage to get any B12 injections or supplements they won't work without good levels of folate.

Ferritin/iron - you are also deficient in iron, did the GP not give you something for this? You're clearly below range. Ideally you want ferritin to be up around 80. Spatone doesn't have that much iron in it so might not be enough to raise your levels. Having said that, my ferritin level was 31 and I've been taking 2 sachets of Spatone a day mixed with some vitamin C powder, and taken well away from tea and dairy products (both affect absorption). I'll let you know when I've had a retest if it's worked!

I've seen your posts over on Thyroid UK and I would say please don't stop taking your thyroid meds. You will undoubtedly get more benefit from them when you've sorted out these nutritional deficiencies, which are enough on there own to be making you feel pretty unwell.

If your GP is unhelpful try contacting Dr Chandy at the B12d.org charity, email address found here (right hand side panel):

b12d.org/

Hampster

in reply to

Hi Hampster, thanks for your reply and the links.

Yes, I'm on Vitamin D3 at 800IU (Fultium)

GP has said she will not put me on folate as I'm only a little out of range. Not sure why she's said that.

I'm on Spatone for ferritin replacement.

My GP has been really helpful up to now so I'm hoping she's not refusing to help me anymore. :(

Jo xxx

lucylocks profile image
lucylocks

Hi Eaoz,

yes it was the 1.65 that confused me, also Ellie saying blood rarely gets up to 2.

Thank you for informing her this is an international forum.

You may also like...

low b12 levels with hypothyroidism

Hello I posted in thyroid forums and my b12 and ferritin is quite low so I was suggested to post...

Low Vitamin B12 Not anaemic

My B12 level was 110 which was low, my GP says I am not anaemic. Other blood results are thyroid...

Vitamin B12 \"normal\" Folate low

Vitamin B12 is 365 (normal range 181-910), but my Serum Folate is 5.1 (should be >5.4). My Serum...

Is this level of B12 low enough for treatment?

request, my B12 level was 221 which the doctor said is normal. But I had a Vitamin D deficiency...

Really concerned for my husband bloods reveal really low vitamin B12 and D3

months ago. The other day He had his folate vitamin d and b12 was checked Yesterday his gp rang to...