Pernicious Anaemia Society

not improving

I was experiencing mild neurological symptoms that kept getting worse. After months of testing my b12 was checked in April 180 (scale 141-489) then my folic acid in June 8.3 (scale 10.4-42.4) my thryoid was also swinging hyper (Ive been hypo all of my life)

I moved back to the US and had loads of tests (celiac's, anti parietal etc) and was supplementing with pills. my b12 was 412 pg/ml by July 21st

moved again to France who is very liberal with their injection policy and I got 6 loading doses in August and 3x a week in sept.

I've also had an MRI to rule out MS, no HIV, Hep C, and taking folate, iron and a regular b vitamin

my questions, I've looked through the site and it seems that once supplementation starts there aren't any tests to determine whether or not how well my body is using b12?

should I try to change forms of b12? (here they use cyano)

is there anything else I should be testing for? my neurological symptoms have gotten worse, Ive since had a NCS that showed damage in both feet and hands, and feel numbness in my trunk. just worried I am a few weeks or less from having to quit my job...

Thanks

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Is this something that has got worse since you went on to injections (not clear from the post) or is it something that has been on a downward trajectory for a long time? Do the shots have an effect which then goes away pretty quickly?

May be that where you need your levels to be has been changed by having the shots - and you may need them more frequently than you currently have them as a result - even if you are having them weekly. This shouldn't be a problem if you are still in France as they aren't prescription only and I believe you should be able to get them done at a pharmacy.

MMA test - and homocysteine - might be useful to clarify if there is something going on that is preventing your cells getting the B12 they need.

Its also possible that there is more going on than just B12/folate.

On the employment side - have you talked about things to your employer? - in the UK legislation means that employers are under an obligation to make reasonable adjustment to accommodate someone who has a disability (defined as a long term condition that affects your ability to live on a day to day basis). I don't know if this comes from enacting EU legislation or not but it may be worth looking into and discussing with your employer if there is similar protection in France. Reasonable adjustments does guarantee adjustments as they won't be able to make them if they are too expensive etc.

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I was wondering in a Hcy test would be useful if France doesn't offer ready access to something like the MMA at Viapath/St. Thomas'.

lunez22 This all sounds so very concerning - what is your GP's response to your recent NCS? Are you being scoured for all sorts of rare viruses etc.?

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I'm in France & I've just had the MMA test done. I emailed the lab direct to ask if they did it as I was told be my doctor and a consultant at the hospital 2 years ago that these further tests weren't available here. Also it's covered by our card vitale so we don't have to pay for it. The active B12 one is also available but you have to pay out for that one and it's €149. You do have to get a prescription from your doctor to have it done and he has to fill out a special form which the lab gives you. They say the results take up to a month but mine were back in 2 weeks. I did take copies of my email and replies from the lab though as my doc didn't know anything about it. Hope this may help.

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Hi Gilli567

doe the MMA have the name in France?

thanks

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Oui.

l'acide méthylmalonique - which appears to get contracted to AMM (not surprisingly).

This is the information about "Deficiency in B12 & Folates" from the French Lab Tests Online site:

Examens

La première indication d'une insuffisance en vitamine B12 ou en folates est souvent l'anémie et les globules rouges de grande taille, fréquemment détectées par un test de routine appelé NFS (numération globulaire). Ce test est employé pour détecter une insuffisance, déterminer sa sévérité, établir la cause sous-jacente de l'insuffisance, ou pour surveiller l'efficacité du traitement.

Examens de laboratoire

Fréquemment demandés pour diagnostiquer et surveiller une carence en vitamine B12 et/ou en folates:

- dosage de la vitamine B12 circulante. Si la concentration est basse, une insuffisance est suspectée, mais la cause n'est pas identifiée. Si la concentration est normale, une insuffisance en folates peut toutefois être présente.

- NFS (numération des globules sanguins). Un examen classique de routine pour repérer des anomalies globulaires. Elle permet la mesure des différents types cellulaires, leur nombre et leurs caractéristiques. La carence en vitamine B12 et en folates entraîne une baisse de la quantité d'hémoglobine, une taille augmentée des globules rouges (macrocytes). La taille des globules blancs et des plaquettes peuvent également être diminuée.

- Le dosage des folates. On utilise soit le sérum soit les érythrocytes (globules rouges) une valeur basse indique une insuffisance. Si la valeur est normale, une insuffisance en B12 peut être présente. Ce dosage peut également être employé pour surveiller l'efficacité du traitement.

Plus rarement mais parfois utilisés pour diagnostiquer une carence en acide folique ou en vitamine B12:

- l'acide méthylmalonique dosé dans le sang ou les urines. Il est parfois utilisé pour aider à détecter les carences modérées ou précoces en B12.

- l'homocystéine plasmatique totale. De temps en temps demandé lorsque les dosages de vitamine B12 et d'acide folique ne sont pas significatifs. Cependant, elle est élevée dans la carence en folates et en vitamine B12, et n'est pas spécifique d'une des deux carences.

Demandés pour aider à déterminer la cause de la carence en vitamine B12:

- le test de Schilling. Ce test était fréquemment demandé pour confirmer un diagnostic d'anémie pernicieuse mais n'est pratiquement plus disponible de nos jours.

- les anticorps anti-facteur intrinsèque. Cet anticorps gêne la liaison entre la vitamine B12 et le facteur intrinsèque. Il peut être présent dans l'anémie pernicieuse (ou anémie de Biermer) mais est peu sensible; il est par contre hautement spécifique de l'anémie pernicieuse.

- les anticorps anti-cellules pariétales gastriques. Ce test correspond à la recherche d'un anticorps contre les cellules pariétales gastriques qui produisent le facteur intrinsèque. Il est positif dans presque tous les cas d'anémie pernicieuse mais non spécifique car peut également être détecté dans d'autres pathologies auto-immunes.

labtestsonline.fr/condition...

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It's AMM here but I did ask for MMA in my email and they understood what I was after.

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Thanks everyone for the replies, I realized I should have made a better title for my post :)

I think that is a bit of the problem I just moved here so it has taken awhile to find a good doctor and then I have to google translate to find out what I was tested for :)

the neuro did ANA (lupus I think) and ENA (Sjogrens, which I think he thought I had) both negative, then my 2nd time testing for intrinsic factor 1,11 under 1,20 is negative

I don't mind paying for the HCY test just worried it will be a waste if I've been injecting

I see a new internist Wed we'll see!

to answer Gambit's question I felt neuro symptoms all the way back in Jan. but they were so slight and not constant, then there was a big jump in May, then to an almost completely numb foot which led me back to doctor

I don't notice an immediate affect from the shot but some things have gone away, pins and needles for example

thank you everyone

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Hey,

You should probably test Lyme and also auto-immune diseases! Symptoms are the same as B12 deficiency.

I started with Lyme, my Elisa test was positive but Western Blot was negative. I also did PCR test, went back negative.

Then I tested B12 on my own (doctor did not think of this) and I had deficiency so I hope this is the origin of my symptoms (I am a vegetarian so it could be logical).

I will go to the laboratory this morning to test auto-immune blood test, we never know.

And finally if B12 does not work (I hope it will! I can already after 8 days see some improvement, hope it will carry on), my doctor ("internist" doctor) told me we would do IRM, Petscan, etc. to look for Sclerosis plaques or something like that.

Good luck!

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Can I ask what kind of symptoms you have? You have said peripheral neuropathy but I am interested to know what specifically

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it started as pins and needles in a toe, tips of fingers, side of hands, even nose and upper lip, then moved to numbness, lots of twitching and vibrating. I walk with a cane now to take some of the weight of my left foot which I cant feel

the past few days some nerve pain

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