PA /B12 curious : hi there, Quick... - Pernicious Anaemi...

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PA /B12 curious

Regenallotment profile image
9 Replies

hi there,

Quick question for you PA experts.

with a few symptoms that tick PA boxes over many years that are not completely resolved by B Complex would you.

Pile right in and try B12 injections to see if that helps?

Or

Go to GP and ask to be tested?

Last NHS B12 result was Serum vitamin B12: 844 ng/L (normal range: 197 - 771)

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Regenallotment profile image
Regenallotment
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9 Replies
Nackapan profile image
Nackapan

I would definitely get a blood test.Folate.

Vit D

Iron

Ferritin

Magnesium ( if they will do it)

B12 will still be high from supplements.

Ask what could be causing your symptoms?

If an autoimmune problem pA or another absorption problem you may not be getting the b12 to where it is needed .

The test level may just show what's in your blood not if its been used .

IFAB testing

Some get b12 tested privately for 'active b12

Mma if functional b12 suspected

Is it a high dose of oral b12 .

Some improve by taking more oral b12

Some have a trial of b12 injections

I personally wouldn't go to injections until everything tested first.

I had no other explanation apart from a low serum b12 test result .

B12 injections essential but I got alot worse before improvements.

For most there is no turning back.

If caught early the outcome is better.

However even with a b12 Injection regime my symptoms are managed.

Some symptoms alot better.

Some gone .

Some remain

So not all resolved .

So your expectation of completely resolved may not happen even with injections.

Just thoughts 🤔 for you to consider

Regenallotment profile image
Regenallotment in reply toNackapan

Thanks for this, I do regularly test all these vitamins as already DX with auto immune thyroid. Have been supplementing and testing regularly for over 12 months. All now above mid range. Did previously have iron deficiency anaemia (low ferritin/normal iron) fixed with high strength haem iron supplement). Zinc remains low, GP seeking advice on that, Selenium over range.

I’ll ask the question next time I’m in with the GP and follow the super useful posts and replies I’ve seen here about sourcing privately from Germany by wedgewood thanks for the speedy response, and thanks jade_s for hinting I should take a look here 🌱

jade_s profile image
jade_s in reply toRegenallotment

Glad to see you here! Sorry I haven't been able to reply - been travelling, but you've already got lots of great info :)

Everything I know is in the pinned post "Various B12D/PA resources" ;)

Keep us posted!

Regenallotment profile image
Regenallotment in reply tojade_s

Thank you, hope you had good travels. I have made an online request to gp to look at ruling out a PA diagnosis so we shall see 🌱

wedgewood profile image
wedgewood

Your last B12 reading was so high , so that most GPs will.not want to test you for Pernicious Anaemia ( The intrinsic Factor Antibodies test )This test is only about 50% accurate . There really is no 100% test for P.A

It is possible to have a high B12 reading and still have P.A but most GPs either don’t know this or don’t believe it .

You say that you have been supplementing with a B vitamin complex which hasn’t completely resolved your symptoms

It is worthwhile asking your doctor if he would prescribe a trial of B12 injections . You might be lucky . Failing that, there are beauty parlours and some hairdressers that will give B12 injections ( google) Pricey though . A short trial of 6 injections over 2 weeks could give you an indication of whether b12’ injections are the answer .

Or you could do what members on this forum do , and self-inject . If you wanted to do that , you could get the information here . Best wishes .

Regenallotment profile image
Regenallotment in reply towedgewood

Thanks so much I will read and investigate further 🌱

J972 profile image
J972

Hi Regenallotment

I’m curious as to how you got on with your request to have PA ruled out by GP? Did they agree to run any tests? I’m thinking about making a similar request to my GP.

Thanks 🙏

Regenallotment profile image
Regenallotment in reply toJ972

No progress there, am at the eye rolling (theirs not mine) stage with the GP when it comes to my self sourced supplements and self treatment. I don’t want to make myself sick stopping all the supplements to be able to get tested. Tried that with coeliac testing and it was hell with no useful results. GP apologised for putting me through it. Took a few weeks to recover, so I guess I’ll never know for sure. I’m happy now I have a routine and self treatment remains relatively affordable, I don’t drink or smoke so the odd £15 on a few weeks worth of B12 ampoules is doable.

J972 profile image
J972

Eye rolling 😤😤😤

Thanks for the response. You’re right, might well be worth a SI trial. Good luck with whatever you do 🙌🏼

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