Pernicious Anaemia Society
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Just need to vent!

Hello,

Been to the doctors today after waiting 3 weeks for an appointment only for the doctor to barely look at me and pretty much refuse to listen. My b12 was as low as 149 last year but my most recent test was 284. I've never had any treatment but was taking a vitamin b complex prior to this test.

Despite requesting intrinsic factor antibodies the lab only did gastric parietal ones and these came back negative. Despite me saying this test is not advised my gp was refusing to rerequest intrinsic factor antibodies saying my b12 was completely normal and GPC is the most sensitive test. He wouldn't listen that the tests can be inaccurate and said MMA, homocysteine and active b12 are not available. He barely glanced at my symptom sheet (I have 22 symptoms) and refused a therapeutic trial. He also said that they don't treat symptoms if the lab results don't show anything. I also asked for free t3 to be checked and that was refused :( I've now demanded an endocrinologist appt and after much discussion managed to get another request for IF antibodies in the meantime. Why is it so difficult?! It makes me really angry that if you don't go with a list of what you want and well informed you get fobbed off with nothing!

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Hi,

Have you considered writing a letter to GP?

b12deficiency.info/b12-writ...

My understanding is that in the UK , letters to GP are filed with a person's medical records so are a more permanent record of issues raised.

"He also said that they don't treat symptoms if the lab results don't show anything."

This comment makes me think he hasn't read the following documents (UK info..may not apply if you're not in UK)

1) BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart makes it clear that in UK, people who are symptomatic for B12 deficiency should have an Intrinsic Factor Antibody test and start initial B12 treatment. This applies whether B12 is low or within range.

IFA test can help to diagnose PA, but test is not always reliable. It is possible to have PA even if IFA test has a negative result (called Antibody Negative PA).

2) BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients symptomatic for B12 deficiency, even if no clear deficiency in blood tests , in order to prevent neurological damage.

3) UK NEQAS B12 Alert

LInk to NEQAS statement in link below.

b12deficiency.info/b12-writ...

Link also makes suggestions for writing letters to GPs about B12 deficiency.

I am not medically trained just someone who has struggled to get a diagnosis.

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I feel your pain!

I literally had to perform a sit in in the Doc's surgery to get them to do an I.F test! My serum level was 250, so they didn't see a need to treat either, even though I had horrendous symptoms, including neurological ones. One Doc literally laughed in my face and told me that I DEFINITELY didn't have P.A!

They were most surprised when the I.F and parietal cells came back positive - I wasn't!

As an aside, another idiot Doc this week..........I went over with ear pain and some intermittent numbness on the same side of my face. He poked my ear lobe and said that there was no way that I had an infection, as I didn't react! He said it was neuralgia and prescribed, wait for it, mindfulness classes, he even gave me a card for a local teacher. At my cost, of course.

The next day my 'neuralgia' burst, trickled out and the ear stopped hurting - honestly is it that hard to diagnose a simple ear infection!!

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I hope you made a complaint about this (ear infection). It's appalling treatment.

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Yep, and I'm now on appropriate treatment for my 'neuralgia'.

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Topazrat...you couldn't make it up.

Shameful treatment.

Hope you enjoy the mindfulness classes - in the spirit of the theme (have nothing against them - unless prescribed for ear infection 🤔).

👍

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