How can you get homocysteine test on NHS

[HighlandMo]

I’ve had an under active thyroid for many years and now I think may be B12 deficient too. Also have high blood pressure. I’ve been doing a lot of research recently and read about the importance of homocysteine. I had it tested privately about six years ago and it was at the “high end of normal” then so would really like to know what it is now. The nearest place to get it done privately is over 100 miles away so that really isn’t an option right now. I asked my GP about B12 recently but my test came back at 651ng/l (range 200-700) so he didn’t even look at the symptoms I had ticked on a checksheet.

[wedgewood]

You can get a Homocysteine test at Medichecks .

[HighlandMo in reply to wedgewood]

Thank you - I saw that but it’s only available in person in London.

[wedgewood in reply to HighlandMo]

Oh,I had one which I could do with the kit they sent me . I had to get blood drawn at my local hospital or they would have sent a nurse to my home to draw it . Mind you that must be several years ago now , and they must have changed the procedure. Sorry to have misinformed you .

[wedgewood in reply to HighlandMo]

cerascreen does a home test for £69.00

[HighlandMo in reply to wedgewood]

Thank you. I saw that one too but have read that the finger prick tests don’t give very accurate results. I also just wish I could get something I feel I need from the NHS and that the GP might take action on.

[wedgewood in reply to HighlandMo]

I really hope you succeed . But as we know the NHS is up a creek without a paddle ……, My. daughter who lives in Germany thinks i’m exaggerating when I tell her how bad things are here

When I told my GP about my results , I had a before self injections and after B12 injections results , she said it was no use telling her — she had no knowledge of Homocysteine results ! I could not believe what I heard. ! ( my result had dropped from 15 to 7 !!)

My experience of NHS surgery regarding P.A. is honestly terrible . We just have to look after ourselves . This forum is great for us .

[bookish]

Food for the Brain are advertising that they will be offering an at home fingerprick test from January. foodforthebrain.org/product...

York labs used to do one but as far as I know stopped some years ago and there was some concern about accuracy from this type of test. That hopefully may have been resolved.

I think that optimal levels may have been revised a little too - the old York figures were less than 10 being optimal, 10 - 15 being at risk and then high risk (16 - 20) and very high risk (20 +). These are from 2013, and I am fairly sure that they too had altered, as Dad did their test in 2012 and was told his result was in the normal range (13, as I remember). Food for the Brain suggest now that optimal is less than 6 or 7, with supplementation suggested if level is 10 or more. So it is likely that if you were considered high end of normal you will need to take some action, unless something has already changed. You can have a functional B12 deficiency at any serum level, but it could equally be a folate (B9) or B6 deficiency causing higher Hcy, and you may find magnesium very helpful.

[HighlandMo in reply to bookish]

Thank you - that’s all very helpful and ties in with what I’ve been reading - that the finger prick tests aren’t very accurate so I don’t think I’ll bother with them. The blood draw seems to need very special action only available in certain places - my nearest seems to be Edinburgh - which isn’t very near! I managed to find my actual results from a test done in London in 2017 when it was 6.1. I’m just about to order Epsom salts to try and boost my magnesium.

[bookish in reply to HighlandMo]

I did actually manage to get a Hcy test (and MMA) with NHS, through Adult Inherited Metabolic Diseases, although they won't give me the actual result and it was done 4 years after I started self-treating my deficiency (my request for testing then was refused) so not surprisingly all was 'normal'.

I found Epsom salts rather drying on the skin and use Better You magnesium flakes and oil spray, just in case you find the same problem. Best to take it slow to start, as it can be a bit much for some - small amount of mag and not too hot water. Then build up as it suits you. Cheers

[HighlandMo in reply to bookish]

I’ll have a look at the Better You. I already have the Vit D with K2. I’m so weary with all this having gone through the whole “blood tests say borderline so no treatment” with my thyroid. So I found myself more or less going it alone for nearly 20 years. Now it seems to be starting all over again. I’m beginning to wonder if medical training gets it right in any area at all.

[bookish in reply to HighlandMo]

I know the feeling, and the wondering. By the time I saw a good NHS endo my thyroid hormone levels had actually improved a bit although he did agree that my private tests had shown them to be a little low and that going gluten free had been a good idea. So no treatment provided for the 12 years post partial-thyroidectomy. I'd improved vit D, added vit A and E, gone gluten free then grain free, and dairy free, treated B12D and added methylfolate, found poor oestrogen processing so gave that a hand, then hit menopause and thyroid levels improved, so suspect that the dominant oestrogen had been giving the thyroid a really hard time. Thyroid and B12D go hand in hand and not entirely clear which causes which. B12D can affect pituitary signalling so can result in central/secondary hypo plus altered DNA methylation can contribute to autoimmune conditions and anti gastric parietal cell antibodies are common to both. I must admit I am planning on trying to get Dad to do the Hcy fingerprick again, even if it may not be that accurate.

[HighlandMo in reply to bookish]

Wow. You’ve really got a handle on it all. I’m just beginning to try and learn about Bs and iron. Find all the iron stuff very confusing. I’m convinced I’ve got low stomach acid but can’t imagine GP taking kindly to that suggestion or taking action so I keep quiet or I’ll end up on acid suppression meds. Hey ho. Lots of research to do.

[bookish in reply to HighlandMo]

Not sure about that - there is an awful lot I don't know! The forums have been hugely helpful and like you I did a lot of reading, but once I started to make changes that actually made me feel better it spurred me on to find out as much as I could. Iron is confusing, I agree. Low acid is far more common than high, so I use apple cider vinegar and lemon or lime juice with/on meals. Doesn't mean I can digest anything tricky, but an improvement on digesting virtually nothing!

[Sleepybunny]

Hi,

Welcome to the forum.

You would probably need to see a specialist in UK to get a homocysteine test.

Specialists that might order a Homocysteine test include

neurologist

haematologist

endocrinologist

There are others as well.

Links about B12 deficiency that might be useful. Some links may have details that could be upsetting.

Link about "What to do next" if B12 deficiency suspected or recently diagnosed.

b12deficiency.info/what-to-...

In UK people who are symptomatic for B12 deficiency should get treatment even if serum B12 is within normal range.

Are your symptoms consistent with B12 deficiency?

If yes, have a look at blog post below about being symptomatic for B12 deficiency with normal range serum B12.

b12info.com/your-serum-b12-...

If you're symptomatic but GP won't consider treatment because serum B12 is within normal range, might be worth showing them this article below.

Functional vitamin B12 deficiency

Martin R Turner 1, Kevin Talbot

PMID: 19151237 DOI: 10.1136/jnnp.2008.161968

pubmed.ncbi.nlm.nih.gov/191...

Symptoms of B12 Deficiency (folate deficiency also mentioned)

pernicious-anaemia-society....

b12deficiency.info/signs-an...

cks.nice.org.uk/topics/anae...

b12-institute.nl/en/symptom... (B12 Institute Netherlands)

Symptoms of Peripheral Neuropathy (damage to peripheral nerves)

nhs.uk/conditions/periphera...

Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.

Functional B12 deficiency

If symptomatic with normal range serum B12, you might want to look into Functional B12 deficiency. This is where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells so person develops deficiency symptoms.

MMA, homocysteine and Active B12 (holotranscobalamin) may help to diagnose functional B12 deficiency.

If you think PA is a possibility, worth joining and talking to PAS (Pernicious Anaemia Society).

PAS membership is separate to membership of this forum. It's open to people worldwide and you do not need a PA diagnosis to join.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Testing for PA

pernicious-anaemia-society....

Unhappy with treatment (UK info) ?

How to write letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Link above has letter templates. Point 5 is about being symptomatic for B12 deficiency with normal serum B12.

My feeling is that putting concerns into a letter makes it harder for GP to ignore them. Always keep a copy.

Delayed treatment for B12 deficiency can have serious consequences. In severe cases the spinal cord may be affected.

GP may find this PAS article interesting (discusses spinal cord damage).

pernicious-anaemia-society....

Link to thread about Patient Safety, has useful links for those in UK having difficult health experiences with B12 deficiency

healthunlocked.com/pasoc/po...

UK B12 documents

NHS article about B12 deficiency (aimed at patients)

Causes section mentions Functional B12 deficiency.

nhs.uk/conditions/vitamin-b...

Summary of BSH Cobalamin and Folate Guidelines

pernicious-anaemia-society....

Includes statement

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

In my words this means ....if you have the symptoms with a normal B12 result, you should be treated promptly to stop neuro damage.

BSH Cobalamin and Folate Guidelines

Aimed at health professionals.

b-s-h.org.uk/guidelines/gui...

Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.

stichtingb12tekort.nl/engli...

NICE CKS (Clinical Knowledge Summary) for B12 deficiency and Folate deficiency.

Aimed at patients and health professionals.

Signs and Symptoms section states.....

"Note: clinical features of vitamin B12 deficiency can occur without anaemia and without low serum levels of vitamin B12."

cks.nice.org.uk/topics/anae...

NICE are developing new B12 deficiency guidelines to be published in 2024.

nice.org.uk/guidance/indeve...

nice.org.uk/guidance/GID-NG...

I urge UK forum members who suspect b12 deficiency to track down the local B12 deficiency guidelines used by their ICB (Integrated Care Board) or Health Board and compare them with NICE CKS document.

Wrong ideas about B12 deficiency

Many on here have met health professionals with wrong ideas about B12 deficiency.

Misconceptions about a B12 deficiency

(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)

stichtingb12tekort.nl/engli...

Diagnosis and Treatment Pitfalls

(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)

b12-institute.nl/en/diagnos...

Help for GPs

1) PAS website has a page for health professionals.

They can join PAS as associate members, no charge.

pernicious-anaemia-society....

2) Club B12 is a group of researchers and doctors who are looking into B12.

club-12.org/

3) A good article to pass to GP

B12 article from Mayo Clinic in US

The Many Faces of Cobalamin (Vitamin B12) Deficiency

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

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

I'm not medically trained just someone who suffered for years from unrecognised and untreated B12 deficiency.

I've written other detailed replies on the forum which might be worth looking at.

There is a pinned post "various PA/B12D resources" which has lots of useful info.

If you're in Scotland (I assumed Highland meant you were) I can post some B12 info specific to Scotland. Just let me know if you want me to.

[HighlandMo in reply to Sleepybunny]

Yes please I’d like Scottish info. I took a list of symptoms from one of the check lists you’ve mentioned above (I think it was PA society). The nurse had aLready done a blood test and the GP had the results when I saw him to ask about B12. With his eyes on the screen and the B12 result there he ignored my check list and tossed it aside saying “That’s for PA your B12 is fine”. End of story and back to the blood pressure and statins debate … they really want to talk about that rather than what’s bothering me.

[Sleepybunny in reply to HighlandMo]

It is possible to have PA with normal range serum B12.

Might be worth joining PAS (Pernicious Anaemia Society) and seeing is they can suggest info to pass to your GP.

pernicious-anaemia-society....

Perhaps you could write a letter to GP and include some of following

1) Symptoms list

2) Relevant family and personal medical history eg if gastritis present, family history of auto-immune diseases eg PA/Coelia, family history of having B12 injections.

3) Relevant blood test results

4) Quotes from UK health documents.

See letter writing link in my other reply.

Scotland specific links (some info may be out of date)

The B12 Society (UK charity based in Scotland)

theb12society.com/

PAS used to have a support group in Scotland but there's a vacancy for group co-ordinator at moment.

pernicious-anaemia-society....

There used to be a thyroid support group that welcomed people with B12 deficiency in Kilmarnock. I don't know if this still exists. They used to post on Thyroid UK forum on HU.

Health Boards Scotland

scot.nhs.uk/organisations/

NHS Scotland link - B12 deficiency and Folate deficiency

nhsinform.scot/illnesses-an...

Advice to GPs on when to test B12 - Scotland (published 2020).

hats.scot.nhs.uk/wp-content...

Accessing Health Records (Scotland)

nhsinform.scot/care-support...

I think these might be your local B12 deficiency guidelines. Likely to be reviewed after new NICE B12 deficiency guidelines are published in 2024. Keep an eye on them as they can get changed at short notice and a change doesn't always mean better treatment.

Check what area this health board covers.

NHS Highland B12 deficiency

rightdecisions.scot.nhs.uk/...

NHS Lothian B12 deficiency

apps.nhslothian.scot/refhel...

Some Health Boards periodically review patients on B12 injections.

nhslguidelines.scot.nhs.uk/...

guidelinesinpractice.co.uk/...

A Scottish National Formulary was in development. Not sure if it's been published.

Health Boards will have their own formularies which list drugs/medicines that can be prescribed in that area.

I think BNF (British National Formulary) is still in use in Scotland.

bnf.nice.org.uk/

Petition to Scottish Parliament about B12 deficiency (covers period from 2011 - 2018)

parliament.scot/GettingInvo...

Click on underlined headings in link above for more info.

Complaints

CAB (Citizens Advice Bureau) Scotland - NHS Complaints

citizensadvice.org.uk/scotl...

PASS

Patient Advice and Support Service (Scotland)

careinfoscotland.scot/topic...

cas.org.uk/pass

Local MP or MSP may be worth talking to if struggling to get adequate treatment.

Health is a devolved matter in Scotland.

List of MSPs in Scotland

parliament.scot/msps/curren...

List of MPs in Scotland

members.parliament.uk/regio...

Scottish Public Services Ombudsman

spso.org.uk/

[wedgewood in reply to Sleepybunny]

First rate response, as usual !