New diagnosis: Hi, I have been going to... - Pernicious Anaemi...

Pernicious Anaemia Society
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New diagnosis

Emmapemma
Emmapemma

Hi, I have been going to my GP for over a year with fatigue, headaches, blurry vision and joint pain. She said you are a working mum, what do you expect. I pushed for vitamin tests and I thought I had reumatoid arthritis so asked for antibody testing. She phoned me with the results to say I didn't have RA but I had antibodies from my gut and need to keep checking my b12 regularly.

My dad had just passed away at this point so was not in a good place and just felt frustrated that I still didn't have a diagnosis for my symptoms.

I went back before Christmas to ask for more of an explanation. She said you have pernicious anemia as you have intrinsic factor antibodies but your b12 was fine last time so we will just check it yearly.

Now I went home and started reading about all this and surely she should have put me on injections as I've got the diagnosis?

Has anyone else got joint pain? my knees are so painful. I'm only 38 but I feel like my body is 65...

9 Replies
oldestnewest

That doesn't sound right at all. If you have a diagnosis and symptoms . I really don't know if knee pain is part of it. I've had it for ages and I thought wear and tear of my job. But I have putility up with too many symptoms.

What was your B12 level. I thought with PA you cant make B12. So are you simply using up your stores?

Emmapemma
Emmapemma
in reply to Nackapan

I don't know what the b12 was, she just said it was normal, I asked for a printout ages ago but that one hasn't got b12on at all...

I've been reading about b12 testing and it is an incredibly inaccurate test as not all b12 in your bloodstream is active and as little as 10%of your b12 could be active...

fbirder
fbirder
in reply to Emmapemma

The 'Active' / 'Inactive' B12 is irrelevant. B12 is carried in the blood bound to one of two proteins, haptocorrin (HC) and transcobalamin (TC). The TC-B12 is the only type that can enter the cells (nobody is quite sure what the role of HC-B12 is). About 20% of B12 is the 'Active' TC-B12. The normal serum test looks for both types. The 'Active' test just looks for the TC-B12 - but it has a normal range about 25% lower than the serum test.

The important factors about the serum test are that it is inaccurate (test the same sample twice and you can get result that differ by up to 20%) and that the 'normal' range overlaps quite a bit with the 'deficient' range. So you can easily get somebody whose test puts them in the deficient zone - but they're perfectly well, or you can get somebody whose test is 'normal' but they suffer from a deficiency.

That's why a sensible course of action is to look at symptoms and to split test results into 'definitely deficient', 'almost certainly not deficient' and 'hmmm, maybe'. This document from one NHS trust describes how they set their normal range and how they treat people in the different zones. hey.nhs.uk/wp/wp-content/up...

Note that their test classifies about 4.5% of normal people as 'definitely deficient'. But still many people with levels above that will have a deficiency. They could lower the bottom of the range, but that would catch even more healthy people.

clivealive
clivealiveForum Support

Hi Emmapemma if you have Intrinsic Factor Antibodies that will make it virtually impossible for you to absorb Vitamin B12 from your food.

I hate that word "NORMAL"

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.

We store several years worth of B12 in our liver but this needs to be "replaced" like a car battery needs to be recharged when the engine is running or your mobile when you make lots of calls.

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.

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

I wish you well.

Hi Clive.

You described all my symptoms 100% for the Folate deficiency part!

It really goes to show how different Dr's vary greatly.

When I was diagnosed back in April, my GP said you have Folate deficiency, B12 deficiency & Pernicious Anemia.

When I asked what that all meant, his reply was simply, "Probably" "injections for the rest of your life" And that was that!

I had my loading doses & was prescribed Folic acid. However, when I went to pick up my third script of Folic acid, I was told the Dr had cancelled it!

So I've been taking 400ug per day from the health shop.

I also asked if I could have my injections more often than every 3 months as I felt great a few days after them, but then felt crap again after a few days. He agreed, but as long as I had a blood test first which, as I now know won't make any difference at all, which is why I had to start the SI, to help feel "Normal" & not feel terrible for the next 10wks.

I have an appointment to see him on Tuesday so have loads of questions ready, I wonder what replies I'll get 🤔

If you have PA, you should have B12 injections. Is there another GP in the practice you could see? Perhaps print off some of the pinned information on this site to leave for them to read. Thrre is a huge lack of understanding about b12 issues out there! Hope you get sorted soon, and welcome to this site. There are some lovely (and way more knowledgeable than me!) people on here!

Gambit62
Gambit62Administrator

your doctors logic is flawed.

The normal range is based on an average of where 80-90% of people are okay.

The normal range for serum B12 is extremely large - that means that there is a lot of individual variation.

Just because your results are in the normal range that doesn't mean they are normal for you.

Individuals will tend to regulate serum B12 levels that are appropriate to them by releasing B12 stored in the liver as and when necessary. If you have a B12 absorption problem then this mechanism doesn't work properly any more because it depends on the absorption mechanism (B12 released in Bile to be reabsorbed into the blood in the ileum). This means that levels will start to drop.

It can take years or even decades for this to result in a full blown deficiency.

If an absorption problem has been developed - and positive for IFA is a very good indicator of PA - then your GP should start treating you now - particularly as you are highly symptomatic from the symptoms you describe.

Although PA is associated with a particular type of anaemia, the name is actually an historic misnomer. Anaemia is a symptom of the underlying B12 deficiency but doesn't cause all the symptoms. 25% of patients present without any sign of anaemia but some may already have significant neurological problems. These need to be addressed quickly to avoid the risk of permanent neuropathy.

Suggest that you ask your doctor to look at the BCSH guidelines on diagnosis and treatment of cobalamin and folate disorders which they can access through the BNF.

They can also be accessed here (though I'm not sure it is the most up to date version)

onlinelibrary.wiley.com/doi...

Sounds like your Gp is muddling up with Hypothyroid/hashimotos! Id get print outs of all your tests n go from there

Yes exactly the same 1 year on my b12 was 48 said aww cause you work and single mum wouldn't listen to me finally after seeing so many specilist I got ME and nerve damage I've had the same job for 30 years I'm only 45 leaving my job now just keep mythering doctors I do wish you well x

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