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Pernicious Anaemia Society
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Why symptoms return when blood levels are still high?

Wondering if anyone can help... I went on a joint doctor visit with my husband, who has been a bit sceptical about b12 and it's 'symptoms'. The doctor told us there's no point having an injection before 3months as your levels will still be sky high from the loading shots. So this my husband believes... even though my symptoms have come back after 4wks and he's having to put up with me again! My problem is I don't know the answer to why that's not true...

So why DO we feel ill from deficiency symptoms when b12 levels in the blood are still high?

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Because the b12 is not getting into your cells . The subject hasn’t ever been researched properly . It is a fact though that different people need varying amounts of B12 injections . I need one every week . A friend with PA needs 2 every day . But doctors will not acknowledge this . There is some research going on at the moment about this. ( read the latest PAS newsletter ) Many people can manage on 3monthly injections . Most members of PAS need more than that. That’s why they join -because they became so very desperate . We then have to resort to self - injection . We can get our B12 ampoules from reliable German online pharmacies .

The one fact is that the medical profession is very ignorant about PA . And it is not financially worthwhile for them to bother . ( no financial rewards for diagnosing it - no big pharma connections - they don’t make it because B12 ampoules cannot be patented ) You may not be able to get the extra injections you need to keep well.If you decide to self-inject, come back here and we will tell you all you need to know ! Best wishes

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Thanks for your reply! I did suggest this in desperation and my husband then said... So if it's not able to be used why will another injection help?

Would the answer to this then be that the amount differs in different people for how long they can last on the amount that the cells can actually use?

He says I sound like an addict 😆 give him his due its not easy to get your head round.

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The answer is not known . Not enough research is done yet . Read the latest discovery about people needing different regularity of injections in the PAS newsletter . It is a fact that some people need more regular injections and it is NOT a question of addiction !!! There is HUGE IGNORANCE about PA . I had terrible symptoms and my feet were totally numb when I was only allowed one inhection every 3months . I saved my feet by self injection every day for a month, then weekly. Left too late , symptoms can become permanent . Heed this warning . The medical profession themselves do acknowledge that once injections are started , blood tests for B12 are POINTLESS -This can be read in the medical guidelines . They will always be super-high . This is no indication of what is getting to your cells . A new injection will give you more absorption . I don’t know the reference for this , but look in the pinned posts ,print it out and take it to your doctor . Better still , write a letter to him/her and include it, because this has to be filed with your notes . Do keep in touch and inform us of your progress (or non-progress!)

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Hi Yellowkangaroo when your course of loading doses (did you have six on alternate days?) did you still have neurological symptoms?

If so, the loading doses should have continued "until there was 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...

In addition you will see that as you are still having symptoms B12 injections can be given every eight weeks not the twelve your doctor seems to be advocating.

Having had the B12 injections isn't a magical overnight cure and it is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.

Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

Unfortunately, a severe deficiency may cause damage to brain and nerve cells that is very difficult to reverse and early detection can be critical in preventing permanent neurological damage.

This is not meant to scare you (more your husband) but it is the "worst case scenario" if the deficiency is not treated effectively.

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.

As to high levels of B12 the following article may help

stichtingb12tekort.nl/weten...

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

I wish you well.

.

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Why do symptoms return even when levels are sky-high?

Nobody knows. Nobody can even come up with a good guess.

B12 is involved in two biochemical pathways. One converts homocysteine into methioine, the other converts methylmalonic acid into succinic acid. When B12 levels are low the levels of hCys and MMA in the blood rise.

But people who find that they need for frequent jabs normally have low levels of hCys and MMA. That means that the B12 is getting into the cells and doing the job it is supposed to do.

The only answer is that there is another process involving B12 (or other processes). And that, for some unknown reason, those processes require much higher levels of B12.

The new research mentioned by wedgewood might offer some insights as to what these unknown processes might be. They have found differences in the chemicals excreted by people who need frequent injections. Now they need to identify what those chemicals are and what they say about those unknown processes.

But, even before then, the fact that real scientists have found a significant difference should help persuade doctors that some people might need more frequent injections. Much more persuasive than the complaints of patients.

So I do hope these early results get published soon, even if it’s just a letter in a medical journal.

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Hi,

May be some useful info in these links.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

PAS news item

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies.

If you're in UK, I'd recommend reading following documents/articles.

UK B12 documents

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

bnf.nice.org.uk/drug/hydrox...

NICE CKS

cks.nice.org.uk/anaemia-b12...

More B12 info in pinned posts on this forum.

I'm not medically trained.

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Thanks, sorry for delay in reply! Very useful links, thank you. Everyone's help on here is brilliant

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Hi,

If you have people who are a bit skeptical about b12, I suggest getting Martyn Hooper's book and leaving it open in the house.

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

If you're in UK and finance is an issue , there's a good chance that your local library service will have a copy of at leats one of the books I listed.

List of B12 deficiency Symptoms

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

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