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Pernicious Anaemia Society

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Chippysue profile image
17 Replies

with a b12 of 198 (191-663) and ferritin 19 (10-150) how do I convince my GP to diagnose b12 deficiency and prescribe injections??

GP said that my levels are fine!!!!!!!!!

where is a paper which I can show my GP?

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Chippysue profile image
Chippysue
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17 Replies
fbirder profile image
fbirder

Do you have symptoms of a B12 deficiency? pernicious-anaemia-society....

If so the symptoms should be treated - frankhollis.com/temp/Summar...

Sleepybunny profile image
Sleepybunny

Hi,

If you are in UK, the following recent uk documents/articles make it clear that people who are symptomatic for B12 deficiency should be treated even if their B12 blood levels are normal range to prevent neurological damage.

1)bmj.com/content/349/bmj.g5226

2)ukneqas-haematinics.org.uk/...

UK NEQAS B12 Alert

3) Google "BCSH Cobalamin and Folate Guidelines" Page 29 is a diagnosis flowchart and shows the process a doctor should follow with someone they suspect has B12 deficiency. Sadly some GPs may not be aware of this document.

B12 books

Have you read Martyn Hooper's latest book which is up to date with current UK guidelines?

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency"

I also found "Could It Be B12" by Sally Pacholok and JJ. Stuart , an interesting comprehensive book about B12 deficiency.

UK B12 websites

pernicious-anaemia-society....

PAS tel no 01656 769 717

martynhooper.com/

b12deficiency.info/

b12d.org

patient.info/doctor/pernici...

Have you had a recent FBC (Full Blood Count)?

High MCV and High MCH on a FBC can indicate the possibility of macrocytosis (enlarged red blood cells). Macrocytosis can be masked if a person also has iron deficiency as this can cause microcytosis (small red blood cells).

Have you had a folate test?

b12deficiency.info/b12-test...

patient.info/doctor/macrocy...

labtestsonline.org.uk/under...

Causes of B12 Deficiency

b12deficiency.info/what-are...

Lisahelen profile image
Lisahelen

You could ask if gp is prepared to give you a pheraputic trial of injections to see if it makes a difference to your symptoms. If gp does do this make a list of your symptoms and grade any improvement post injections so gp can see what effect the dose has given you.

Marz profile image
Marz

Hi Suze

Good you have been able to access the fab information from the good people here. Sorry to read your battle has now begun with B12 after your long battle with the thyroid. I'm sure you have noticed that I seem to talk about B12 more than the thyroid on the TUK forum :-) Many of us seem to hang out on both fora as the two often go together.

It seems the struggle for the correct treatment of B12 and thyroid is similar. Both inexpensive to treat - and yet causes so much suffering if left under or untreated.

Did you Doc have any ideas as to the cause of your low B12 ? Do you have any gut issues ? Testing for PA maybe a good idea too.

Do so hope you receive the treatment you deserve. Will look out for your posts.

Marz :-) x

123harry profile image
123harry

your ferritin should be around 80 to get full benefits from it and properly uptake b12 , you may never get the proper treatment for ferritin or b12 unfortunately many of us don't if you are just under, jarrows 5000mcg tablets work ok from me and you can purchase them from amazon have you had folic and vit d tested? you can do a private active b12 test on medichecks but have this done before any supplements and there are other nhs tests which would point towards p.a

fbirder profile image
fbirder in reply to123harry

your ferritin should be around 80 to get full benefits from it and properly uptake b12

Ferritin levels have no influence on B12 absorption.

Mar-y profile image
Mar-y in reply tofbirder

From what I have read, iron and magnesium are B12 co-factors?

fbirder profile image
fbirder in reply toMar-y

I'm not aware of them being co-factors. Any references?

deniseinmilden profile image
deniseinmilden in reply tofbirder

They are ESSENTIAL for me! My jabs don't work at all without them and I go back to being a vegetable without them, alongside the other multivitamin and mineral supplements, plus extra folate, potassium and amino acids.

Almost all minerals and vitamins are used in the full B12 metabolism as part of Krebb's Cycle, which is why I recommend taking a multivitamin and mineral supplement rather than just a B complex.

I'm sorry I don't have the links to all the papers I read to find this out but I promise you can trust me on it.

I think one of the things I did was Googled "detailed Krebb's Cycle", Krebb's Cycle metabolism" or something like that.

Sorry - must run now.... D

fbirder profile image
fbirder in reply todeniseinmilden

Yes, B12, iron and magnesium are all essential. But Fe and Mg don't affect the way B12 works in anything but the most general way.

Proteins are an essential part of the diet as well. But they only affect B12 functionality in the same way as they effect every single other bodily function

Iron is involved in the electron transport chain - the final stage of energy generation from glucose after the Krebs Cycle. But that doesn't mean it is involved in the single step that utilises B12 (which is far removed from the ETC and happens in a different part of the cell).

Likewise, Mg acts as a regulator for some of the enzymes used in glycolysis (the step before Krebs Cycle) but not in the bit that B12 is involved in.

I've just realised. Cofactor has a very specific meaning in biochemistry. A cofactor is a chemical that is required for the functioning of a specific protein. So iron (in the form of iron-sulfur centres and haem is a cofactor for the enzyme succinate dehydrogenase (which is used in part of Kreb's Cycle).

And B12 is a cofactor of the enzyme methylmalonyl CoA Synthase - which is used to produce succinyl CoA which is used in part of the Krebs cycle.

So both B12 and iron are cofactors for enzymes involved in Kreb's Cycle. But that doesn't mean that iron is a cofactor of B12.

Foggyme profile image
FoggymeAdministrator in reply tofbirder

Fbirder, if you feel a twinge of pain, it's because you've been copied and pasted into my ever growing file!

Thanks for the information and explanation 😀

Mar-y profile image
Mar-y in reply tofbirder

This references some medical journals: b12deficiency.info/assets/p...

fbirder profile image
fbirder in reply toMar-y

It does, indeed, reference medical journals. However, the relevance of those references leave something to be desired:

1. If you are low in

either folate or iron, it affects the uptake of B12.

The reference is to a paper on how folate affects urinary excretion. Not really relevant to absorption.

6. Once vitamin B12 has been administered, the increase in red cell production will increase the demand on iron

stores

Reference is 'not found'.

And that's the sum total of mentions of 'iron'. Magnesium isn't mentioned at all.

Chippysue profile image
Chippysue in reply toMar-y

thanks

Chippysue profile image
Chippysue

Thanks for your replies, will look at links later.

Doctor will not retest or do any further testing or prescribe anything because he says its normal which I know they are not!!!

I am enquiring on behalf of my daughter.

I will ring the help line at PA as I am now a member, thanks all.

Marz profile image
Marz in reply toChippysue

Sorry to read it is your daughter that is struggling with Low B12. I once wrote a post on TUK - Low B12 and Thyroid - Chicken or egg ?? At least you are on the case and can prevent it becoming more serious.

I had great support from Martyn Hooper when my grandson had a problem.

Sleepybunny profile image
Sleepybunny

Hi,

Just wondered if you had ever had thyroid tests (some symptoms overlap with those of B12 deficiency) and also if you had ever been tested for Coeliac disease? Coeliac disease can affect the gut and therefore lead to absorption problems with some nutrients including B12.

thyroiduk.org.uk/tuk/

coeliac.org.uk/coeliac-dise...

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