Feeling worse but GP says test results fine.

Had blood test done via Blue Horizon. Showed B12 198 "insufficient".

Tried B12 patches,which help, but effect lasts 3 days only.

Returned to GP who repeated test for B12, Folate and supposedly intrinsic factor.

Just phoned for results.

Serum B12 299.8 ( I'd not used a patch or any supplements for week before test.

Folate 12.8 ( range 4.6 -18.7)

No record of Intrinsic Factor.

Dr is happy, no action required.

I feel awful and have done now for months.

So tired. I made it out of bed at 11 a.m. after probably 16 hours in bed but still too tired to do anything.

Brain fog.

Dizziness.

Shortness of breath ( never smoked or worked in industry, mining etc)

Numbness in toes, fingertips and lips, very little loss of feeling but there. Occasional tingling in feet and hands.

If I do exert myself ( example was hoovering the car out after months of not doing so and I take 2 dogs out in it daily) I did it over 2 days, just 20 minutes at a time, and the last stint I was shaking, visible tremour in hands, legs shaking and trying to talk on phone couldn't string sentences together.

I'm at the end of my tether. Cannot see what I can do next. I have a goitre ( again passed off as nothing to take action over) I'm a lifelong vegetarian ( well, 50 years, I'm 61)

Any ideas of what I can do next?

[Lisahelen]

Go and batter the dr round the head! Lol

You could take along fbirders file which has relevant info about treating symptoms not numbers but i suspect you might not get very far.

It might be that you are going to have to look to self medicating with either the patches as you know they work or consider injecting.

[Gambit62 Administrator]

The use of patches etc can affect B12 results for months so having stopped for a week before hand is not going to have been sufficient.

At 298 your results are not necessarily going to mean that you are okay. There are warnings about going just on test results with B12 deficiency - please look through the pinned posts (second box down on the right) and share some of the relevant materials with your GP.

It is unlikely - from the change that you reported - that your deficiency is purely dietary - and if you ate dairy and eggs even less likely to be dietary, which means you have an absorption problem that needs to be treated with injections in accordance with NICE and BCSH guidelines, assuming you are UK based.

Really hope that you can get through to your doctor that they can't just evaluate you on your test results ... and if they start to say that it can't be B12 because you don't have any signs of macrocytosis then point out that significant numbers of people don't present first with anaemia as this is a symptom of the underlying B12 deficiency not a cause or a defining characteristic.

There are options if you really can't get your GP to listen but it is best if you can work with your GP - or find one that you can work with

[Hidden in reply to Gambit62]

Thanks. This GP is not going to listen. He's referred me to a respiratory clinic for shortness of breath ( despite a clear Xray and ECG) and they might contact me one day with an appointment.

I think I'm going to have to go it alone and self treat.

Thanks for your support. I was just in tears after speaking to the receptionist.

[Sleepybunny]

Hi,

There are some links on my last post in your old thread that might be helpful.

healthunlocked.com/pasoc/po...

It is possible to get an IFA (Intrinsic factor antibody test) done privately if GP will not do one.

In the past I have written polite letters outlining concerns I have. My understanding is that letters have to be filed with your medical notes so are a record of concerns raised. I keep ciopies of letters I write. I gave my Gps a copy of PAS symptoms list with all my symptoms ticked....

pernicious-anaemia-society....

...and a copy of martyn hooper's latest book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency"

Has GP seen the following..

page 29 BCSH Cobalamin and Folate Guidelines

BMJ article about b12

bmj.com/content/349/bmj.g5226 See 5th summary point

Some people on the forum join the PAS. they are helpful, sympathetic and a source of useful info.

[Hidden]

Can I just check the difference between Serum B12.result and Active B12.result?

My understanding is Serum shows how much is in the blood and Active shows how much is used . I could have 299 in my blood stream but a much lower amount is absorbed and used, leaving the excess to be excreted?

Brain fog and other worries at the moment are really limiting my taking in and processing huge amounts of info.

[Sleepybunny]

hi,

These links may be helpful in explaining about serum b12 and active B12.

active-b12.com/frequently-a...

b12deficiency.info/b12-test...

[Hidden]

Sleepybunny Thank you. Concise info--- exactly what I needed! Just cannot cope with info overload at the moment. One day I hope to be me again.....