Very low B12 despite supplementing

[Horsey07]

I’m hoping someone here can give me some advice. I was diagnosed with Hashimoto’s disease in the summer with a raft of symptoms. One thing the blood tests showed was very low B12, D, folate, and ferritin. On the advice of a GP I began supplementing all of these. My latest blood tests show that my B12 has not improved at all and is still sitting at 55.6 (37.5 - 188). This despite taking B12 daily for the last 8 weeks. Unfortunately, I’m now having trouble getting finger prick tests to work so I don’t have results for folate or ferritin. Is the B12 low enough that I should talk to my GP about it?

[Nackapan]

If its oral supplements you are obviously unable to absorb them. Thise deficiencies often go together.

You are 'in range ' do it depends on your symptoms

Ferritin takes time A yesr for me.

Folate increases quickly.

A maintenence of 200-400mcg folic acid once levels up after your prescription.

Vit D often needs prescription loading doses.

B12 injections may be needed .

Was IFA test done.?

Go by your symptons too

Tc

[Gambit62 Administrator]

the test you have had is active B12 and your results are within range. This test is more accurate than serum B12. That doesn't rule out B12 being involved in symptoms (though you don't mention these).

B12 is stored in the body in good quantities and used to maintain B12 levels at the point that is right for you. There is a lot of variation in what is right for an individual as evidenced by the large 'normal range'. It may be that this is the point where you naturally sit, and your body is just excreting any excess over this level as it would normally do.

If your previous test was significantly higher then that would indicate an absorption problem that wasn't being helped by supplementation but as a single result the result above is inconclusive in relation to absorption problems.

[Sleepybunny]

Hi,

It's quite common on here for forum members to report both thyroid issues and PA or B12 deficiency from other causes.

UK guidelines indicate that people with the symptoms of B12 deficiency should be treated even if their serum B12 (Total B12) is within normal range.

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

b12deficiency.info/what-to-...

If you think PA is a possibility, worth joining and talking to PAS.

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)

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.

Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.

Keep copies of any letters sent or received.

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

Summary of BSH Cobalamin and Folate Guidelines

pernicious-anaemia-society....

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

stichtingb12tekort.nl/engli...

BNF Hydroxocobalamin

bnf.nice.org.uk/drug/hydrox...

NICE CKS B12 deficiency and folate deficiency

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

Each CCG/Health board in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency.

See if you can get hold of the local guidelines for your area and compare them with BSH/BNF/NICE CKS links above.

Some local guidelines have been posted on the forum.

Two B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

BNF treatment info in book is out of date.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

Some doctors have misconceptions about B12 deficiency.

Misconceptions about a B12 deficiency

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

stichtingb12tekort.nl/engli...

Blog post that mentions misconceptions about B12 deficiency

b12deficiency.info/a-b12-se...

Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books, more B12 websites, B12 articles and a few hints on dealing with unhelpful GPs.

Some links may have details that could be upsetting.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained.

[Horsey07]

Thank you so much for all the very helpful advice and information, looks like more learning for me to do. Have a great Xmas.

[FlipperTD]

Scientist, not medic.

I have an intense dislike of fingerprick tests for reasons with which I can bore for England. They're OK when there isn't anything better, but they are so at risk of artefacts that I would always prefer venous samples taken by a competent phlebotomist and analysed promptly. [Rant over!]

Speak to your GP and explain your concerns, and make sure you explain what you've done so far. Life's difficult enough for GPs already.

Folate treatment when someone is B12 deficient isn't a good idea either.

Good luck.

[Hidden in reply to FlipperTD]

Keep ranting flipper..... educating us is why we're here

merry christmas

[Horsey07 in reply to FlipperTD]

Thank you, I actually couldn’t get enough blood from finger prick samples for the full range of tests to be carried out so I’ve paid for a private phlebotomist to do a blood draw. I’m lucky, I can afford this option, not everyone can. Frankly, I’ve had my fill of GPs in the last twelve months. I moved house a little over a year ago and had to switch from a brilliant practice to one that doesn’t even scrape into the mediocre category, and that’s after transferring from one that was downright awful. Yes, GPs have had a tough time of it, but an awful lot of patients have had it tougher.

[Tomos1417]

Definitely see your GP, your levels are much too low, many regards x

[Horsey07 in reply to Tomos1417]

Thank you for the advice, I’ll try to make an appointment immediately after the Xmas break.