Blood cont.

[Natty91]

Cont.

[Foggyme Administrator]

Hi Natty91.

Bit difficult to read but what I see is serum B12 121ng/L (180 - 1000ng/L).

The lab describes this as low - but it's way below the reference range (if I see it right), so B12 deficient. especially so,if,you have already been having injections.

I note that the IF trst is reported as negative - as the annotation says, you can still have PA even if tested negative (ab negative PA).

I find the other notes on the lab results a bit disconcerting - seems they advise giving loading doses and then nothing more, with a B12 test again six months later - then resume treatment if B12 has fallen again.

I've never seen this as a regime for treating B12 deficiency. More importantly, it does make any mention of the importance of immediate and continued treatment if neurological symptoms are present (about 30% of people present with neurological symptoms but no positive test for PA).

If you do have neurological symptoms , your GP should continue to treat you after you have had the loading doses (with every other day injections until no further improvement, then injections every eight weeks).

Information about this is in the pinned posts (see reply to your other post)...suggest you highlight the things relevant to treatment for neurological symptoms and take this along to,your GP so,you can be ready to state your case for continued treatment with B12 injections.

It might also be worth printing the document about subacute combined degeneration of the spinal cord (on the pernicious anaemia society website - or elsewhere on the Internet) and taking this to show,your GP. I'm not suggesting you have this but it would be good way of showing your GP what can happen if people with neurological symptoms are undertreated in the early stages of B12 deficiency.

Folate look a bit on the low side - and you'll use this processing your B12 injections. Most people tak a maintenance dose of 400iu daily and keep an eye on their levels.

Please let us know if your GP is reluctant to carry on treating you with B12 injections and we'll be able to advise further.

Good luck 👍

[Natty91 in reply to Foggyme]

Hi, thanks for replying so quickly. This is my blood resilts from early November, before i received any injections. My last injection was last week, i have no more booked in now but a follow up blood test in 6 months.

What would you state as neurological symptoms?

Thanks 😊

[Foggyme Administrator in reply to Natty91]

Hi Natty91. Neurological symptoms: problems with balance (dizzy or fainting, frequent bumping or falling against walls, general unsteadiness, inability to stand up,with eyes closed or in the dark), numbness and or tingling (especially in the hands, arms, legs or feet), and tinnitus (ringing or buzzing in the ears).

Some would also class brain fog and problems with memory / cognition as neurological symptoms (though GP's don't always recognise this 😖.

Here's a link that might help:

pernicious-anaemia-society....

👍

[Natty91 in reply to Foggyme]

Hi i have none of these and never have had. I am just tired, find it hard to get to sleep and even if i get 8 hours i still wake up tired. I have slight anxiety now. But that has got better over the last week...... Do you think i have any lasting neurological damage?

Thanks again for your help

[Foggyme Administrator in reply to Natty91]

Hi Natty91. If you don't have neurological symptoms and have never had them it's not something you have ever had, then it's unlikely to be something to worry about.

However, if you are still getting some of the other B12 deficiency symptoms, after your loading doses, and you fail to feel less tired, I'd go back your GP (with evidence from this site) and ask to be put on regular B12 injections, instead of waiting.

GP's should treat symptoms, not blood results, and if you are still having symptoms then you should still get treatment. The right amount of B12 is the amount that makes and keeps you well 😀.

And although you tested negative for IF there is still a 50% chance that you could have PA.

Good luck 😀

[Natty91 in reply to Foggyme]

Thanks. I will definitley be keeping a record of my symptoms and if they are getting better or worse. If they persist i will definitely be going back to the surgery (mother in toe) to get it sorted rather than just wait for my follow up test. Anxiety isnt considered as a neurological symptom then?

[Foggyme Administrator in reply to Natty91]

That's a difficult one - some would say yes (I would) but getting a GP to agree with that might be difficult (though it shouldn't be).

Depression is also a recognised symptom of deficiency and again, I would argue a neurological one - but GP's do not seem to be that well informed.

Try this website - I think (if I remember rightly) they list these as neurological symptoms - might persuade your GP:

B12deficiency.info

😀

[pvanderaa in reply to Foggyme]

Neurological- has more to do with the nerves themselves.

Psychological- has more to do with the mind - that has to function in the network of nerves.

Psychological symptoms are sometimes caused by neurological damage. Sometimes by trauma. Sometimes unknown.

The doctor may be making these distinctions between "neurological" and "psychological " symptoms. Just realize that they can be related in the case of a B12 deficiency.

[clivealive Forum Support]

Here's a list of symptoms:

1 Pernicious Anaemia - Symptoms

1.1 General Symptoms

The following general symptoms are common in those with PA:

 The Strange Tiredness

 Fog days, where you have difficulty in thinking clearly

 Weakness

 Fatigue

 Upset stomach

 Abnormally rapid heartbeat (tachycardia) and/or chest pains

 Abnormal yellow colouration of the skin (jaundice)

 Heightened sensitivity to hearing, smell, and taste

 Vision distortion, e.g. seeing stars, or double vision

 Breathlessness

 Headache

 Cankers (ulcers) in the mouth

 Sleep disorders

 Intolerance to loud sounds, flashing lights

 Intolerance to crowded malls (needing personal space)

 Tinnitus – ringing in ears

1.2 Neurological Symptoms

The neurological symptoms of vitamin B12 deficiency may include:

 Numbness and tingling of the arms and more commonly the legs

 Difficulty walking

 Loss of balance

 Hands feel gloved with loss of sensitivity

 Loss of vibration sense, having to look down to see where you are walking

 Unable to close your eyes and stand on one foot

 Night vision

 Memory loss

 Disorientation

 Dementia

 Extreme mood changes

 Short term memory loss

Some experience many of these symptoms and some none of them. It depends on how quickly the PA is treated and on how well managed it is.

1.3 Gastrointestinal Symptoms

The gastrointestinal symptoms of vitamin B12 deficiency may include:

 A sore tongue

 Appetite loss

 Diarrhoea and/or constipation

 Stomach pain

[wedgewood]

I'm so pleased to see the note underneath the Intrinsic Factor Antibody test , saying that a negative result does not exclude a diagnosis of Pernicious Anaemia ! BRILLIANT !

[Natty91 in reply to wedgewood]

So how do i go about finding out if i have Pernicious Anaemia?

[Gambit62 Administrator in reply to Natty91]

generally it would mean repeating the IFA test until you get a possitive - though looking for signs of gastric atrophy in the ileum is another possibility - but that would mean that the effects of PA were quite advanced in relation to the ileum.

[Sleepybunny]

Hi,

I'd recommend reading the "BCSH Cobalamin and Folate guidelines". This is a UK document that outlines the diagnostic and treatment process for patients with b12 deficiency. link below.

b-s-h.org.uk/guidelines/ Click on "Diagnosis of b12 and Folate Deficiency"

bmj.com/content/349/bmj.g5226

UK B12 websites

pernicious-anaemia-society....

b12deficiency.info/

If you have the time, there is a lot of b12 info in pinned posts on this forum.

b12 books

"Could it be b12" by Sally Pacholok and JJ. Stuart

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. Martyn is the chair of the PAS (Pernicious Anaemia Society.

I am not a medic just a person who has spent years trying to find answers.