Pernicious Anaemia Society
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Relevence of repeat b12 after loading doses

Hi knowledgable people.

Briefly I joined the group after visiting my GP in September with peripheral neuropathy probably for at least a year. Blood tests indicated borderline b12 deficiency at 180 and folate slightly low. So began on loading doses and after a battle with different GP's managed to have 16 injections and took folic acid for a month too. I was also referred to neurologist who is sending me for nerve conduction tests soon.

I have been back to GP today, because she I feel exhausted and the neuropathy has returned, even my lips feel numb! My last b12 was given on 20 November. My GP wants to recheck FBC and B12 before he agrees to further B12 injection.

Going back in 3 days.

Question in view of symptoms can I request one anyway? I thought that rechecking b12 would be of no benefit? False results?

Thanks

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I get my b12 levels checked. I usually have 6-9 weekly injections and then stop when i know i have testing coming up. Since injections began in May 2017 i had testing 17 days after most recent injection and had 9 injections during the prior 9 weeks. Level was in 800s.

Then it was tested 32 days after most recent injection with 6 the prior 6 weeks. Level was in 600s.

This tells me i have an issue with lack of Intrensic factor being present in illium to reabsorb b12 during the normal recycling of b12 daily. If intrensic factor was present then the super vast majority of b12 should be reabsorbed and my levels would be over range, as many on this forum have, when retested.

However i have/had (unknown until i can retest again) h pylori. I think this had harmed my stomach cells and am hoping if i kill h pylori, my stomach will repair and produce acid and intrensic factor again.

You also need to know your folate and iron levels? B12 does not work alone.

Has your doctor checked for root causes of b12 deficiency? H pylori, celiac, chrohns, ect?

What about full thyroid panel? Low thyroid causes fatigue. And dont be fobbed off with just a tsh test. T3 is what makes us feel energetic and it needs to be in upper 1/3 of range, not just in the range.

Yes you can ask for testing. All the doctor can say is no and if you dont ask for it then you wont get it.

Best of luck.

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Thank youKimberinUS

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You are correct. Measuring B12 is a waste of time, money and resources. Show her this NHS document and ask to be treated as they describe...

hey.nhs.uk/wp/wp-content/up...

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Thanks for confirmation. I felt better after the battle to have more loading doses as per protocol re neurological impairment. Now I feel worse than ever!

Neurologist also not really convinced that I have b12 deficiency ,having nerve conduction tests on Wednesday and if these are normal is going to look at central nervous system!

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My GP made me have a re-test, and the lab wrote back on the report that it was a waste of time. He's not asked again :)

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Thought so, had them done yesterday so back to GP's to battle for further b12 3 weeks earlier than per protocol !!

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UPDATE , my repeat bloods, after 16 B12 loading doses ,the last 9weeks ago, showed ,as predicted , B12 level above 2000. Therefore my GP thought I should wait for further B12 for a few more weeks!

I thought with my symptoms becoming worse and literally struggling to get out of bed in a morning that I need to try another so quoted the NICE guidelines with neurological involvement.

Result , he gave me the B12 to see if it improves my symptoms while I wait for further results from neurology.

This group is great for information sharing so to stand your ground with confidence when challenging the medical "experts "

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