Low B12, positive ANA

[BlackInk]

Hello, I'm new here and seeking advice after another frustrating GP appointment today. I've got tons of tedious symptoms:

Sudden, early menopause (HRT hasn’t helped)

Zero libido

Daily nausea and stomach issues (often extreme)

Weight loss and poor appetite

Headaches and facial numbness

Muscle twitches and tingling (periodic)

Weak muscles, easily tired and sore

Painful, swollen, stiff joints (hands, feet, back)

Exhaustion (sometimes severe)

Dizziness/spaced out feeling (most days)

Blurred vision

Problems concentrating, remembering and thinking

Anxiety

This has all been going on and getting worse over the past couple of years or so. I've had lots of tests, but the only significant results so far are:

Positive anti nuclear factor

Low B12 - 166 ng/L (Jan 18) and 161 ng/L (June 18)

Lowish ferritin - 17 ug/L (jan 18) and 15 ug/L (June 18)

Endoscopy clear, coeliac negative, all other bloods withing range as far as I can see.

I have a strong family history of autoimmune disease (type 1 diabetes) and my mum had a pituitary tumour diagnosed and removed when she was about 50.

I'm 45, slim, 2 children aged 6 and 9. Vegetarian but eat as well as I can around stomach issues - plenty of dairy.

Doctors seem largely disinterested and have reluctantly agreed to run blood tests again and just advised over the counter B12 - but I've already been taking 500ug most days since February.

Sorry this is so long, but could anyone point me in the right direction to get help? Feeling really fed up.

Thanks so much

BI

[clivealive Forum Support]

Hi BlackInk you have all the classic symptoms of a Vitamin B12 deficiency and if you were taking supplements prior to the test result of "161 ng/L" you quoted above then I'm amazed it is so low. Was your doctor aware of this?

The British Society for Haematology guidelines say on the Diagnosis of B12 and Folate Deficiency "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment".

google.co.uk/url?sa=t&rct=j...

Make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

It is also important that your Folate level is monitored as this is essential to process the B12.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body and your B12 levels are "bumping along the bottom" of the range.

I am not a medically trained person but I've had Pernicious Anaemia (a form of B12 deficiency) for more than 46 years.

I wish you well.

[BlackInk in reply to clivealive]

Thank you clivealive - my folate seems to be within range (11.7 in Jan and 10.2 in June) but ferritin is always on the low side. I'm going to wait for results of latest blood tests then go back to the GP again - hopefully with moral support. I've listed my symptoms soooooo many times over the past couple of years but noone really seems interested in getting to the bottom of it - I think maybe because I appear well enough. I hold down a full time job and manage to basically look after my children.

[fbirder]

You have the symptoms of Low B12. You have low B12. Why can't the docs realise that you need to be treated for low B12. That means injections.

Taking oral B12 will only help if you are deficient because of your diet. I presume they would have asked if you were vegan and, therefore, ruled out that option.

[BlackInk in reply to fbirder]

I know fbirder, it was as though he didn't believe that low B12 was a problem. He knows I've been taking oral supplements since February. I'm vegetarian, but I have milk, cheese, yoghurt and butter pretty much daily. I also eat eggs, oats, marmite and some soy products. Even on days I feel too ill to eat properly I still have some dairy. I suppose I'll just await the latest results and go back again...

[fbirder in reply to BlackInk]

Ah!

In that case your deficiency might well be dietary.

Milk, cheese, eggs, etc do, indeed, contain B12. But not a lot.

People need about 2.5 mcg a day, on average.

To get that you'd need - 625 ml of milk, or

300 g of cheddar, or

1 litre of plain yoghurt, or

5 and a half eggs, or

4 servings of Marmite.

A 2-egg cheese omelette, washed down with a glass of milk is just about right. But you need to eat that every day to avoid a deficiency.

[BlackInk in reply to fbirder]

I really do eat plenty of dairy though. I drink over 300ml of milk a day, plus at least one portion each of butter, cheese and yoghgurt - plus eggs, soy, marmite, etc. some days. Surely that should be enough, or all vegetarians would be B12 deficient?

[BlackInk in reply to BlackInk]

Just checked online and a standard portion each of yoghurt, milk and cheese provides over 3mcg. I've also been taking supplements at 500 a day (most days) for several months on GP's advice?

[chowmaster05]

Hi BlackInk,

I also had your symptoms, including positive ANA, and I have celiac disease. I have been treating chronic Lyme disease and babesiosis for 15 months. Is there any chance you could have been exposed to a tick bite? You have symptoms consistent with Lyme.

[BlackInk in reply to chowmaster05]

Thanks chowmaster05.

I've had negative blood and biopsy for coeliac, so I don't think it can be that. No tick bites that I know of