Mes symptômes sont-ils dus à une carence en B12 ?

Bonjour,

J'espère que quelqu'un pourra m'aider, car je me rends folle en cherchant mes symptômes sur Google !

Il y a environ 6 ans, une analyse de sang a révélé que j'avais une macrocytose et une carence en folates. On ne m'a jamais prescrit de traitement pour la carence en folates, car on m'a dit de ne pas m'inquiéter à moins de prévoir une grossesse. Il y a environ un an, j'ai subi d'autres analyses de sang ; elles ont à nouveau confirmé que j'avais une macrocytose et une carence en B12. Le médecin a dit à l'époque que les niveaux étaient suffisamment bas pour commencer les injections, mais en raison de mon âge (22 ans à l'époque), il a préféré essayer des compléments alimentaires d'abord. J'ai pris les compléments, mais je n'ai jamais eu de suivi depuis.

Je souffre terriblement de différents symptômes (les plus notables étant les ulcères récurrents de la langue, une rougeur inflammatoire à la pointe de la langue et des plaies récidivantes dans le nez). Je me sens également extrêmement fatiguée en permanence, j'ai les cheveux fins qui ne poussent pas et des ongles très fragiles.

Actuellement, ma langue est rouge à la pointe avec de nombreux ulcères et est très douloureuse. Cela pourrait-il être dû à une carence en B12 ? Toute aide serait grandement appréciée - je me rends folle !

Merci

Cela ressemble beaucoup à une carence en vitamine B12. Vous a-t-on dit quels étaient vos taux lors du test ? Vous avez définitivement besoin d'un autre test sanguin pour votre taux de B12, ainsi que pour la ferritine et l'acide folique.

Votre médecin aurait dû retester vos taux une fois que vous avez commencé à prendre des comprimés de B12, juste pour s'assurer que vous étiez capable de l'absorber par votre système digestif.

Je pense que vous pourriez avoir besoin d'injections pour corriger la carence. Consultez le site web de la Société de l'Anémie Pernicieuse pour une liste complète des symptômes.

Bonne chance pour vous sentir mieux et obtenir le bon traitement. Marion

Are you still taking the B12 supplements?

Also, if your Folate deficient and you are not supplementing that also you possibly won't be processing the B12 that is getting through.

I am absolutely incredulous that "your doctor said at the time that the levels were low enough to start injections however due to my age (22 at the time) he wanted to try supplements first" Whatever was he playing at with your health? He was probably thinking of his budget.

We need to know more about why you became B12 deficient in the first place. Can you "see" yourself in list below?

Who’s at greatest risk for B12 Deficiency?

Anyone at any age, can become B12 deficient. However, certain people are at an elevated risk. They include the following:Vegetarians, vegans and people eating macrobiotic diets.

People aged sixty and over

People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).

People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications that can interfere with B12 absorption including certain contraceptive pills.

People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.

People with a history of eating disorders (anorexia or bulimia).

People with a history of alcoholism.

People with a family history of pernicious anaemia.

People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).

People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients.

People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.

Women with a history of infertility or multiple miscarriages.

Infants born to and/or breast fed by women who are symptomatic or are at risk for B12 deficiency".

I suggest you make a list of all your symptoms present them to your doctor and ask for your Serum B12 and Serum Folate to be tested again.

If they are stil low then demand treatment in accordance with the BNF Guidelines as follows.

Treatment of cobalamin deficiency

"Current clinical practice within the U.K is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form outlined in the British National Formulary, BNF, 

Standard initial therapy for patients without neurological involvement is 1000 μg intramuscularly (i.m.) three times a week for two weeks, then every three months. 

The BNF advises that for Pernicious anaemia and other macrocytic anaemias patients presenting with neurological symptoms should receive 1000 μg i.m. on alternative days until there is no further improvement, then 1 mg every 2 months.

However, the GWG recommends a pragmatic approach in patients with neurological symptoms by reviewing the need for continuation of alternative day therapy after three weeks of treatment"

If you have any further questions please come back

   

Well said Marion

Bonjour,

Merci pour cela. Je souffre en effet de troubles auto-immuns (psoriasis et arthrite) et je suspecte un SII. Le test sanguin effectué il y a un an a été réalisé en raison du SII suspecté.

On m'a donné un approvisionnement de trois mois en comprimés de B12, donc je n'en prends plus.

Je retournerai définitivement chez le médecin généraliste, mais je commence à perdre foi en eux, pour être honnête !

Merci Clive. C'est très bouleversant d'entendre parler des problèmes que loep rencontre pour obtenir le bon traitement. Malheureusement, cela n'a rien d'inhabituel. Les médecins doivent améliorer leurs connaissances sur la carence en vitamine B12 et l'anémie pernicieuse.

Don't give up and don't be fobbed of by your doctor talking about "normal" levels. He needs to treat your symptoms not look at his computer screen and he should remember his oath summed up in three little words "Do no harm"

In the U.S, "experts" consider:-

"...it appears that these markers demonstrate B12 deficiency primarily in patients whose serum B12 is in the "gray zone" (a serum B12 result between 200 pg/ml and 450 pg/ml).  

We believe that the "normal" B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebral spinal fluid (CSF) below 550 pg/ml

At this time, we believe normal serum B12 levels should be greater than 550 pg/ml. For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1,000 pg/ml."

In Japan they start treatment by injection at levels under 500.

Is it possible to take someone with you to the appointment? Your doctor is less likely to be dismissive in front of a witness.

I am not a medically trained person but one who has had Pernicious Anaemia (a form of B12 Deficiency) for 45 years and I'[m still "clivealive" at 75 - old enough to be your granddad.  

Don't I know it Marion. I lived in complete ignorance of "what it was all about" when I was diagnosed with P.A. 45 years ago.

I knew no-one else with it and neither the nurses or doctors I saw down the years ever asked me how I was getting on and it wasn't until I noticed a return of some neurological symptoms in the run up to my next scheduled injection that I asked my doctor for an increased frequency. This "one size fits all" doctor simply laughed in my face and said it couildn't be the P.A. because i was having the B12 injections.

So six years ago I joined the Pernicious Anaemia Society, discovered I was not alone and began to learn all I could about this "Silent Killer", and went back to my GP, convinced him he was wrong got the frequency changed.  

I was originally on cyanocobalamin every four weeks and am now having injections every three weeks.