What tests should I ask my GP for if I think I have pernicious anaemia?

[msbooples]

Hello. I’m looking for advice on how to talk to my GP about pernicious anaemia and request the right tests.

I’m a 30 year old woman and work as a journalist in London.

Two years ago I was diagnosed with B12 deficiency, and I have been taking 1000mcg supplements daily ever since.

However, yesterday I had new blood tests to check for B12 deficiency and other deficiencies (iron, vitamin D) after experiencing a range of different symptoms over the past six months.

The worst and most frightening of these has been persistent dizziness and loss of balance for the past two weeks. I feel constantly unsteady, as if I’m on a boat.

I’ve also been experiencing headaches for around two months, and reoccurring ear, nose and throat problems (I have just been treated for an ear infection and had a throat infection a month ago), as well as heart palpitations, blurred vision and fatigue.

My question for community members is about what I should do if my blood tests show that I have normal or higher than normal levels of B12, due to the supplements that I have been taking? I am concerned that my GP will see this and dismiss my concerns about pernicious anaemia.

What are the best diagnostic tests to push for beyond a simple B12 deficiency test?

Any help or tips on this would be greatly appreciated. I have been feeling very anxious and want to make sure that I ask for the right tests, so that I get answers as soon as possible.

Thanks!

[Rexz]

All blood tests...

Full Blood Count

B12

Homocysteine

MMA (Methylmalonic Acid)

Parietal Cell Antibody

Intrinsic Factor Antibody

It's important to have these done before any B12 supplementation via injection.

If you're also having recent digestive issues such as acid reflux and or early feeling of fullness especially after eating a meal high in protein then I would suggest serum Gastrin also.

Best wishes, Rexz

[msbooples in reply to Rexz]

Thank you Rexz! This is really helpful.

[Rexz in reply to msbooples]

Your symptoms are very suspicious of AIG/PA. Unfortunately there is no 100% test to diagnose. Other than oxyntic mucosa biopsy of stomach through gastroscopy. Hence the list as the results of all along with your symptoms will provide a fairly good diagnostic picture.

Rexz

[Technoid]

The B12D/PA resources post from jade_s also contains much information you may find useful:

healthunlocked.com/pasoc/po...

[msbooples in reply to Technoid]

Thank you!

[Nackapan]

Intrinsic factor antibody test picks up about 50% of those with PA.The most common absorbtion problem.

There are many .

Mh daughter was alot younger than you with very similar symptoms that escalated.

What is your diet like?

Some drugs deplete B12

Sibo

The list goes on .

With your history of low B12 .

Have all the blood tests suggested.

List your symptoms

If nothing else found to treat ask for a trial oc B12 Injections.

There often no going back if an absorbtiin problem.

So maintenence doses injected fof life.

Its importing to get the right treatment before damage occurs.

I had a 'typical ' post menopause onset .

My daughter in Hindsight started having problems with the first hormonal changes.

Even younger but intermittent.

A collapse and vertigo was my finale with terrible migraines .

My daughter .

A mis diagnosis oc fibromyalgia as slog of debilitating pain.

Vertigo.

Throat and sinus problems

Stroke like symptoms .

The symptoms ard so varied.

Yours sound typical.

Folatd will be tested at the same time as B12 .

If low treat after B12.

Vit D common to be low

Ferritin

Iron also..

Passive absorbtion from your oral dose of B12 doesn't sound enough if your diet fine .

Oral B12 can raise blood levels oc B1e snd just circulate and not get to cell level.

There are lots if links Sleepybunny posts .

Tracey Witty

Dr Chandy

Our last chairman

Martin Hooper

Sally Pacholoch

Many othef good resources to wade through .

Hope you get a diagnosis .

Not always easy or indeed reliable as doctors lack knowledge

I got s very low reading from a serum B12 that activated B12 Injectikns .

My daughter had sn even lower reading with megobolastic anaemia.

Had a very late diagnosis .

At least you've been tested already.

Hope you get on okay.

[msbooples]

Hi Nackapan, thanks for sharing your experiences and for the additional information. Sorry to hear that you and your daughter went through such an ordeal with it before getting diagnosed.

I have a fairly good diet. I eat plenty of fresh fruit, vegetables, dairy and fish, and meat once or twice a week. And I love eggs! So, my B12 levels should be fine. I’m not on any medication.

Is it worth me also asking for a coeliac test, to determine if that could be the cause of the low B12?

[Nackapan in reply to msbooples]

Ask fof every test theh will give you.You have to eat alot of gluten before that test .

Read up on it .

If your diet fine.

Most likely cause is sn absorbtiin problem.

My daughter is gluten Free, diary Free,Fructose Fred egg Free.

Not by choice but her digestion issues.

She's starting to reintroduce eggs now .

You woujd have distinctive symptoms if gluten a problem.

A sibo test could be useful.

I eat gluten and everything.

Wd are all different

Take one step at a time.

If on no meds .

( we wernt )

Push for a trial of b12 injections 💉

[Cornwaller]

vimeo.com/891099138/4150efa06b

The above is a quite excellent video by a GP who specialises in b12 deficiency. I think it quite relevant to yourself and will give you in depth knowledge which we have all needed to obtain effective treatment.

Best wishes

[msbooples in reply to Cornwaller]

Thank you for the share! There is so much to learn. I’ll watch this ahead of my appointment.

[Jeep13]

get the Intrinsic Factor Antibody test and the Paretal Cell Antibody test. Serum B12 can be spuriously high and you can have Pernicious Anemia.

[Hockey_player]

Dizziness and loss of balance can also come from an ear problem. I was so bad the room was spinning. Gravol helped when it was making me really nauseous. If you have pernicious anemia, then you might need injections instead of the supplements. Some people do OK on supplements. Many do not. A 2 week trial of every other day injections might give you some information. The problem with PA tests is that they have high false negative rates.