B12 Deficiency

[MaryF]

Firstly I have it myself and due well on regular injections, however it is very poorly diagnosed and managed in this country, patients popped onto pills when they should be having jabs.

1. pernicious-anaemia-society.....

2 pulsetoday.co.uk/news/clini...

GP's appear to be poorly trained in diagnosis and management, it used to be the case that you were given injections according to symptoms not just a linear blood test, most people I know with it badly need more than an injection every three months so end up paying for extra ones. I do this myself.

It is not unusual to have a B12 problem if you are a Thyroid patient, taking a pill for B12 will alter your result for many weeks with the GP and may show that you have high levels, but not how your body is taking it up, and rather like low Iron will stop your Thyroid medication working properly, low Folate if not treated will stop you taking up your B12, so all a bit of a jigsaw.

Mary F

[lupus-support1 Administrator]

A good article, MaryF!

[MaryF Administrator in reply to lupus-support1]

The picture out there needs to improve, Thyroid testing, only the TSH done, which is not fit for purpose, misses many, (so many tests can be done), but best to order your own, and as for B12, I had to point out to a doctor at the time that low Folate and high Homocysteine indicates a problem with B12, and oral supplement spikes the results for many weeks! I had somebody contact me the other day with levels so low, and they had been told they were fine...and the symptoms they had put down to depression!!!! Actually low B12 can make people very mentally unwell. MaryF ps pubmed.ncbi.nlm.nih.gov/353....

[GinaD]

My Mother had low B 12. She ended up in a nursing home ( much needed due to her symptoms,) I wish I had known more then, because I now realize many of her symptoms were probably caused by poor B12 management. And her nursing home doc refused continuing B 12 shots and refused B12 tests.

[MaryF Administrator in reply to GinaD]

The prevalence of Parkinsons in my family including my own late mother, when your B12 is low for a long period it effects the myelin sheaf around nerves! It appears that B12 is low in that group of patients and also other groups with neurological disease. At least the private jabs are cheaper than they were if you have a GP who won't budge on the issue.

michaeljfox.org/grant/relat...

The culture out there for Thyroid and B12 is appalling, even this doctor who got an OBE for his work. meassociation.org.uk/2014/0... The same culture exists for doctors who want to prescribe natural desiccated to thyroid patients not doing well on Levothyroxine, and some of those were doing well with T3 added in the form of Liothyronine., which has been taken off patients by most Endocrinologists, due to outrageous prices for the NHS. Absolutely awful the lack of choice. Many have a particular set/group of genes where converting Synthetic T4 to T3 is not possible, MaryF

[bookish in reply to GinaD]

That is very sad and sadly not uncommon. Many medics are very badly misinformed. Do you know why she was getting injections? If she had PA, you need full testing yourself and it would be a good idea whatever the cause.

[bookish]

Good to see a B12 discussion. You are so right about poor testing, diagnosis and management. B12 D is commonly missed altogether. Anyone with another autoimmune condition may well have parietal cell antibodies (or have had them), as well as direct damage to parietal cells and ageing effects, resulting in less stomach acidity and less or no intrinsic factor compromising nutrients including B12. Ideally no-one would supplement before testing is completed as it can mask those few signs which may be spotted, and it is not wise to supplement folate when there is any chance of a B12 deficiency as it can precipitate a worse problem. There is no test to rule out a B12 deficiency but a few which can rule one in. The Bs work so closely together that all should be supplemented in most people who are symptomatic (and it is a very long list of symptoms). The PAS are enormously helpful and there is plenty of information available about functional deficiencies (B12 metabolism being strongly genetic). For some of course oral/sublingual is ok for maintenance - those younger ones with purely dietary deficiency, or alongside some medications. But you need to know that you are deficient and establish why. Best wishes

[Jillymo]

Hi MaryF - & all the other forum members I have not seen for a while.

It's been a while since we have been in contact. I went on to develope other autoimmune issues so joined other sites to get a bit more insight.

If I remember correctly like myself you were on antiplatelet therapy ie: aspirin, I am on both clopidogrel & aspirin. Aspirin is 'very damaging' to both the gut and bowel as I have found out to my cost. It causes inflammation & after a long jouney of my Dr refering me to a neurologist I insisted I were seen in gastrology. After undergoing various scans ect I have been diagnosed with errosive gastritis & crohns !

I am B12 & Folate deficient. Like most I were prescribed the one size fits all regime of 3 monthly injections ! Due to the most dreadful symptoms & neuropathy I took matters into my own hands & now self inject daily. I do not use clinics because they are not only expensive it makes me angry that they can give B12 injections to people who just desire a boost yet patients with a true 'life threatening' condition have to source their B12 amphouls from abroad.

Many Drs & consultants alike havn't a clue on how to treat the condition hence many patients are left disabled ect. I was surprised when I approached my well known London Heamatologist that she knew nothing of the condition ! My diagnosis of errosive gastritis & crohns now explains as to why I am not absorbing.

My heamatologist prescribed me folic acid which can mask a B12 deficiency hence my B12 deficiency not being picked up until a later date. Due to medical ignorance I have subtained nerve damage..........

In a study of people hospitalized with heart disease, those who had been taking aspirin were nearly twice as likely as nonusers to have a low or marginally low blood level of vitamin B12....... In 2019 I suffered heart failure & now under cardiology for an enlarged aorta.

I cant say I have seen you on the Pas site on here but there is a lot to be learnt if you or others care to visit. New guidelines on treatment are due to come out this month........ nice.org.uk/guidance/gid-ng...

Here is another link other's might find of interest......

This is a great film worth a watch on Utube which shows the dificultys many of us have with regard to treatment....... youtube.com/watch?v=OvMxJ6G...(Not working as expected?)

Take care. 😘 💐

[MaryF Administrator]

I understand your dilemma...... I am on the PA site, but I tend to read, rather than post. I am also in other groups. yes seen that movie. I have had to rescue two friends and one relative from low B12 and help them fight for injections and yes I agree, every 3 months is not enough. MaryF

[Jillymo in reply to MaryF]

I managed to twist my Drs arm behind her back to get my injections 2 monthly, might be worth requesting if you still have symptoms. It seem's many with B12 deficiency are referred to neurologists which indicates our medics are aware of our neurological symptoms but are reluctant to treat accordingly ! If we were requesting antidepressants they would prescribe in a blink of an eye yet a cheap vitaimin we have to fight for.........thats panpharma for you.

The first port of call should be to get to the root of the problem which is normally malabsorbtion ! Like myself you have been on aspirin for a long time, have thyroid issues & it runs in my family too !

[MaryF Administrator in reply to Jillymo]

Well some are not even aware they have a Thyroid problem, and B12 deficiency often goes with that...I was certainly not prepared to believe in a diagnosis of so called 'Fibro' which I proved with private tests I ordered did not exist, I had low levels of lots of things, much better now for treating them all. Keep well. MaryF

[MaryF Administrator]

stichtingb12tekort.nl/engli... Mary F