B12 advice please(Hypothyroidism)

[Anniejw]

Hi,

I have hypothyroidism and been posting my latest blood test results on the Thyroid UK and they have suggested to post this question as someone may be able to help? Would anyone be able to give me any advice, their knowledge regarding my latest B12 blood test results please.

My B12 was 190 ng/L and the ranges are 200.00-910.00 ng/L

I said it seemed low and she said that it had a normal active B12 so don't need to supplement because of the following (I don't really understand what the following test results mean)

Se holotranscobalmin conc (trip472) was 39 pmol/L ( range >30.00pmol/L)

My question is would I have to supplement on both B12 melthylcobalamin lozenges together with B complex? I am also severely deficient in Vitamin D (mine is 28...Range 50 to 200 and advised to take 4,000iu for a month and then drop down to 2,000.

I am always tired, no energy etc. Any advice would be grateful.

[Gambit62 Administrator]

your B12 is low, your serum B12 is also low in the range so likelihood is that you are B12 deficient.

It would be useful to know what your iron status was as well.

Ideally you should try to get your GP to recognise that you have developed absorption problems given that your B12 is very low, your folate is very low and if you have had low iron levels ...

Most likely candidate for the absorption problem is PA, particularly if you have hashimotos as the two auto-immune conditions have a high cross-over.

This is a link to the BCSH guidelines on diagnosis and treatment of cobalamin and folate disorders. Your GP can access these through the BNF

onlinelibrary.wiley.com/doi...

important facts to emphasis are

a) if you have any neurological symptoms these need to be treated promptly to avoid permanent neurological damage.

b) whilst active B12 may be in normal range it is in the grey area for the test, and combined with the below range level for serum B12 the balance of probabilities is that you are deficient.

c) MMA and homocysteine are further tests that can be done if your GP still doesn't feel that the evidence is strong enough*

d)macrocytosis (larger, rounder red blood cells) is not present in 25% of patients first presenting with B12 deficiency so the absence of macrocytosis does not rule out B12 deficiency. This is particularly true if you also have problems absorbing iron.

Ask to be treated in accordance with the guidelines.

This is also a link to an article on thyrogastric syndrome that it might be useful to share with your GP

ncbi.nlm.nih.gov/pmc/articl...

Please do try to get correct diagnosis before taking any supplements.

In terms of supplementing if you can't get your GP to budge - you need to be taking very high dose B12 to have a chance of enough getting absorbed - 1000mcg+ per day. This is unlikely to correct an existing deficiency but can maintain levels. Options are tablets/sublinguals, nasal sprays, skin patches or resorting to self-injecting (plenty of posts on that on here). Injection is the most efficent way of getting B12 into you.

Its quite likely that you will have developed problems with iron absorption and folate absorption so you may want to consider these - folate not so much of a problem - but please be careful with iron and take advice from your doctor or a pharmacist. If you have been deficient for a while and particularly if you have anaemia your body may need to use extra vitamins and minerals whilst correcting damage so you may find folate levels and potentially potassium levels falling for a while.

*and they are determined to waste extra time and money (not something to share with your GP )

[Anniejw in reply to Gambit62]

Hi Gambit 62

Thanks for your reply and really useful information. I explained about absorption in vitamins etc and she said it's within range...so I'm afraid they won't budge 😯. I rang up this pm to check the last time I had a ferritin test and it was Nov 16 and mine was 36 (range is 10 to 200). I have been anaemic in the past (heavy periods) but had a total hysterectomy 5 months ago. I will have to get a private ferritin test and will post the results. In the meantime I will supplement on 4,000 vit D for a month then decrease to 2,000. I will purchase some B12 supplements 1000mcg daily (so keep on this daily dose until I get tested from GP in 4 months?....do i need a B complex to take along side it...if so how much do you think I would need?.

Thanks again ...really appreciate the guidance

😊

[Gambit62 Administrator in reply to Anniejw]

whilst you may have talked to your GP it doesn't sound as if you have actually put things in writing or drawn your GPs attention to the limitations of the tests that they are using and hence the limitations of using them as exact measures. This could change their behaviour. I would encourage you to have one last go at getting through.

I can't advise you on what to take by way of B supplements other than that B12 isn't toxic.

Would suggest avoiding B6 as this can affect people as a neurotoxin.

[Anniejw in reply to Gambit62]

Okay many thanks for your reply...that's great 😊

[fbirder]

Your serum B12 is low. But that test is universally recognised as inaccurate. But people only seem to think it can be inaccurate by giving too high a reading and not that it might be giving too low a reading.

Your active B12 (holotranscobalamin) is well above the bottom of the range. This test is much more accurate than the serum test. So being 30% above the bottom of the range should be a fairly good indicator of no deficiency.

That’s why your doctor has made her decision - because an inaccurate test suggests a deficiency, while an accurate test suggests no such deficiency.

B12 in the blood is bound to one of two proteins, haptocorrin (HC) or transcobalamin (TC). Only the TC-B12 can be taken into the cells and used by the body. Normally the ratio of HC-B12 to TC-B12 is about 4:1.

The active B12 tests measures TC-B12. The serum test measures both of them.

I’m not sure why she bothered with both tests.

[Anniejw in reply to fbirder]

Hi and thanks for responding. Apologies as I'm fairly new about learning about vitamin deficiency and educating myself from reading and understanding the blood tests so really appreciate any advice as my GP is reluctant to assist me and keep telling me I'm within the range.

I was going to order some Jarrows B12 1,000 mcg lozenges and take one daily together with a B complex...Thorne Basic B complex x 1 per day...and then get a full private thyroid test done in 3 months...do you think this would be the first steps...just need a bit of reassurance.

Thanks 😊

[fbirder in reply to Anniejw]

Your GP is telling you that your B12 is within range because it is within range - for the test that is universally acknowledged as being the more accurate.

It’s like measuring the pressure in your tyres. The serum test is like kicking the tyres and guessing if they’re OK. The active test is like using a pressure gauge.

[Anniejw in reply to fbirder]

Thanks for replying that makes more sense 😊