Low Vitamin B12: Hi, after feeling lousy on my... - Thyroid UK

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Low Vitamin B12

Eoperez profile image
12 Replies

Hi, after feeling lousy on my 175mcg of Levothyroxine I eventually convinced my GP to do some further blood tests that I'd read up on on various forums.

My last 2 blood results are as follows:

21/08/2017

TSH <0.05 (range 0.35 - 5.5)

Free T4 17 (range 9-23)

22/08/2016

TSH <0.05 (range 0.35 - 5.5)

Free T4 17 (range 9-23)

Free T3 5.1 (range 3.5 - 6.5)

She would not test free t3 or t4 again this time but had Ferritin, Folate, Full blood count & Vit D tested and I'm still waiting Vit D result.

I got phonecall from receptionist to tell me my B12/folate was low and to supplement with high B12 foods and be re-tested in 6-12 weeks. Great I thought, until I started to look into symptoms of low B12 and I could tick loads off the list which also put my mind at ease a bit as thought I was going mad and wondered why I've been struggling to take a deep breath (which I thought was anxiety) and keep bumping into things (thought I had crap spacial awareness) and why I keep going dizzy.

Now I don't think I should be waiting weeks to have another blood test especially when I eat plenty of B12 rich foods (other than fish).

My results are as follows:

Serum B12: 172 ng/L (range 190.00-910.00)

Serum folate: 5.2 ng/mL (range 3.30-99999.00)

Serum ferritin: 14.7 ug/L (range 13.00-300.00) .

I also have white blood cell count and full blood count results but not sure what is relevant. Can anyone help me?

Thanks

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Eoperez
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SeasideSusie profile image
SeasideSusieRemembering

Eoperez

The best people to advise about your B12/folate is the Pernicious Anaemia Society forum healthunlocked.com/pasoc

Quote your B12, folate, ferritin results and list any symptoms of B12 Deficiency, and I'd include the WBC and FBC results too.

When you have Vit D result, post on here, also any new thyroid results.

SeasideSusie profile image
SeasideSusieRemembering in reply to SeasideSusie

Eoperez

After you have had advice from the PA forum, come back and tell us what they say. I'll comment further on any results then, but you cannot self supplementing with your B12 at that level.

Eoperez profile image
Eoperez in reply to SeasideSusie

Hi SeasideSusie

The pernicious anaemia lot have been really helpful in all of my questions.

Just a quick update, intrinsic factor & paretial cells have come back normal so doubt it's pernicious anaemia. Total Vit D was 81.7 nmol/L so that is normal too.

I'm awaiting a response on whether GP will test active B12, MMA, red blood cell folate (as did serum folate this time) & homocysteine and test me for coeliac disease & h pylori.

She has prescribed 50mcg cynaocobalamin 3 x day but I've yet to start taking them as want other tests doing first. Also found out b12 was 147 ng/L in 2007!

SeasideSusie profile image
SeasideSusieRemembering in reply to Eoperez

Eoperez

Vit D at 81.7 is in the replete range but the Vit D Council recommends a level of 100-150nmol/L. I keep mine at the upper end of this range and supplement all year round with 2000iu D3 daily.

I have read (but not researched so don't have links) that BCSH, UKNEQAS and NICE guidelines recommend:

"In the presence of discordance between test results and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment."

And 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."

I suppose your GP is restricted to some extent to what she can prescribe B12-wise, but 150mcg cyanocobalamin doesn't seem a lot. Normally recommended on here to raise a very low level is 5000mcg methylcobalamin sublingual lozenges daily followed by 1000mcg for maintenance. And there is an article here about why methylcobalamin rather than cyanocobalamin naturalnews.com/032766_cyan... Very few doctors have any knowledge of nutrition and supplements, they're just not taught it.

Eoperez profile image
Eoperez in reply to SeasideSusie

That is very interesting to know about the vit d. I've presented the other facts to GP and just not getting anywhere at present :( I checked in an old BNF and it doesn't even look like they should prescribe cynaocobalamin!

shaws profile image
shawsAdministrator

Before you supplement B12 your GP has to do an intrinsic factor test to make sure you do not have pernicious anaemia. Thereafter if she doesn't give you injections to bring your B12 up towards 900 you will have to buy methylcobalamin B12 sublingual tablets. Usually if hypo our digestion isn't too good so sublingual is better as it is absorbed through our tongue. You place the tablet under your tongue and it dissolves. I will add SeasideSusie for advice on increasing your other vits/minerals.

I find Amazon has a good selection of B12. I will give you a link and if you order anything from Amazon using the Amazon Affiliate allows Thyroiduk.org.uk to have a small sum towards running the website, etc.

healthunlocked.com/thyroidu...

Deficiencies in Vits/minerals can also cause disabling symptoms.

Eoperez profile image
Eoperez

Great, thank you. I'll post my results there and see what they say :)

Marz profile image
Marz in reply to Eoperez

Do you have Hashimotos ? - this could affect your digestion hugely.

Eoperez profile image
Eoperez in reply to Marz

I do yes.

Marz profile image
Marz in reply to Eoperez

Have you considered being gluten free ? Perhaps you are already and I have missed something !

Eoperez profile image
Eoperez in reply to Marz

I have thought about it but haven't tried it yet. I've asked GP to test me for coeliac disease but still awaiting her response.

Marz profile image
Marz in reply to Eoperez

Even if you test negative you can still be gluten sensitive. Many of us here are.

😊

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