B12 level 156 - GP won't treat
Posted , 7 users are following.
Feeling worse than ever, can't even manage a flight of stairs without being totally out of breath. So so exhausted, nerve pain (although I do have a back issue so not sure if related to that) dizzy spells to the point that I'm worried about driving. Can't walk along a corridor without veering off to the side feeling giddy and as for my memory - I forget everything.
So I've had B12 deficiency previously (112) but was IF negative so treated me with the 5 injections and retested 6 months later, I was just over the treatment threshold (thinking 186 but cant remember) so they wanted me to wait 12 months to be retested!
Anyhow recently exhaustion had got so bad that a couple of weeks ago I went to my GP and said I wasn't happy to wait till December as I really feel like my levels are low again. She agreed the blood test which i had a week ago and today phoned me with the result of 156 - she said they will not give me injections as it's not below 150 and I'm to be retested next January to keep an eye on it.
I have a very limited diet due to intolerances and LPR and suffer with upset stomach daily due to IBS so I feel this is the reason why I'm deficient. I'm also on Metformin & Omeprazole which I believe also deplete your levels.
I feel like I'm going mad as feel awful and was sure my levels were low. Now I don't know what's causing all my symptoms and am also worried that by January I will definitely be deficient and will gradually feel worse and worse.
Just had to vent really as am fed up feeling rubbish.
1 like, 35 replies
weeclaire21 mmc1972
Posted
I have been feeling a lot of these same symptoms extreme tiredness , dizziness and short of breathe . I had low levels of b12 and folate so was given medication for a month .. It took weeks to feel any effect but then when my bloods where checked again my levels where fine s medication stopped.
Here I am 2 months later feeling exactly the same!
Gp doesn't seem concerned . I am also on a high dose of Ppi medication as I have ins and heartburn which has led to barrats oesophagus, so fustrated with feeling so rubbish and run down I have every sympathy for you
clivealive weeclaire21
Posted
Hi weeclaire21 having had low levels of B12 and Folate before if your lifestyle has not changed it is likely that you will get them again.
B12 can only be got naturally from food such as red meat, fish, eggs, poultry and dairy produce although soy and some breakfast cereals are fortified with it. Marmite is good too.
Simply put (and I'm not a medically qualified person) - your stomach acid needs to be strong to "grab" the B12 together with intrinsic factor as it goes down and PPi reduces the acid level so that the B12 doesn't get absorbed and passed through into the bloodstream.
Whatever medication you were given simply "flooded" your system so that enough B12 and Folate "got through" in sufficient quantity to benefit you. In comparison, the normal amount of B12 that is enoiugh for your needs in your daily food is negligible and a healthy person can have a reserve of several years worth stored in the liver and like a battery gets a recharge every day.
The problem of B12 Deficiency arises when absorption from your diet is less than is required and so you become like a "leaky bucket" and it may take several years before it manifests itself in the kind of symptoms you are suffering.
Look at the following list of people and let me know if you "see yourself" amongst them and maybe we can come up with something to persuade your doctor to treat you as you need and in accordance with your symptoms,
.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.
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."People who are 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 the contraceptive pill.
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.
"clivealive weeclaire21
Posted
Sorry - my list of "people" got duplicated
weeclaire21 clivealive
Posted
Thank you very much , this definetly makes sense , yes I can identify as I do suffer from ibs and also take a high dose of ppi and will do for the the rest of my life due to having barrats oesophagus
I do have a good diet but limited as any rear meat, too much bread and wheat based products and dairy don't agree with me. I do eat a lot of veg , chicken etc but do struggle with certain foods
weeclaire21
Posted
clivealive weeclaire21
Posted
It does sound as though you have an absorption problem and your treatment for B12 Deficiency should be per the BNF Guidelines as highlighted.
"Standard initial therapy for patients without neurological involvement is 1000 µg intramuscularly (i.m.) three times a week for two weeks.
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.
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
"Make a list all your neurological symptoms, your diet and the "people at risk" you are like and present it to your doctor.I wish you well