Try asking family members to get B12 ... - Pernicious Anaemi...

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Try asking family members to get B12 levels checked

3rdNettydoon profile image
11 Replies

I think I'm gaining the title of an interfering, obsessed older woman.

My lovely cousin warned me to get my B12 tested. He had been told that he must eat meat every day or he would die. He was not given the level of his reading, not given any choice of injections or tablets, nothing except eat meat or die and sent on his way. He was diagnosed with the start of dementia around the same time. I didn't like hearing this. But I hadn't been diagnosed with B12 myself then.

3 years later since my diagnosis, I have read copiously about PA and B12 D. Now I'm not a clever person but i can read and retain certain bits of information. I have asked his daughter and his wife repeatedly to take him for another B12 test. They just say they might and then do not do this. I do understand because this is a medical condition and a doctor shouldn't be disputed. But i think a test is very worth a try. If nothing changes, ok, but at least try for his sake. Perhaps too late now as his dementia is worsening. Breaks my heart.

Now my brother, whom I have also pleaded with to get tested, has had lots of things wrong over last few years. He has now had a stroke and has been diagnosed with ameloyditis (spelling?). Could this be related. Sorry to get so personal but these lads are so close to my heart .

G

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11 Replies

Amyloidosis of the stomach associated with impaired gastric secretion of the intrinsic factor and the development of vit b12 deficiency.

You had every reason to worry then, but dont blame yourself, if people ignore you there's not alot you can do !

I am sorry for you as I know it is so difficult to persuade family, I tried but was fortunate in that none of them suffered too badly.

🤞 sending best wishes

Sleepybunny profile image
Sleepybunny

Hi,

Have you tried leaving a copy of one of these B12 books lying around?

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

BNF treatment info in book is out of date.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies. I cried when I read them as I could see myself in them.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD

What about putting one of these posters up locally..

pernicious-anaemia-society....

b12deficiency.info/posters/

Would they watch a video/film?

PAS conferences

pernicious-anaemia-society....

Films about B12 deficiency

b12deficiency.info/films/

Sleepybunny profile image
Sleepybunny

"ameloyditis"

There's an NHS page on a condition called Amyloidosis but I don't know if this is the same thing.

Some details on the NHS page might be upsetting.

Amyloidosis is linked to a problem in the bone marrow.

I came across some research articles that suggested an association between amyloidosis and B12 deficiency in some cases.

UK centre for amyloidosis.

ucl.ac.uk/amyloidosis/natio...

deniseinmilden profile image
deniseinmilden

You so have my sympathy. It's bonkers, isn't it?

And very sad.

And something that so many of us experience so many times over.

And there will be others who question your knowledge and what you are doing and tend to suggest that it's what you are doing that's making you ill, rather than better, etc.

There are B12 deficient people all around the world who are experiencing the same problem because I've often seen these sorts of comments on other groups as well as this one.

I'm so sorry. It's heartbreaking, isn't it.

Midnight_Voice profile image
Midnight_Voice

Waking up in intensive care after a life-threatening saddle PE left me more than willing to dispute my GP’s initial diagnosis of phlebitis.

mary70 profile image
mary70

AF (Atrial Fibrillation)Relevant information.

Late 2014, (was 70years), I had a stroke. The sad result was that my doctors or the hospital stroke doctor took on board that my vitamin b12 level was already diagnosed as very low by my Locum doctor and i was given vitamin b12 tablets. After I had the stroke in 2014, my Locum doctor had again pointed out to the doctors that my b12 level was still very low, and my Locum doctor's advice was that a blood test should be taken - and again, diagnosed that I had very low vitamin b12 levels and that my health levels were in a very poor state. The advise diagnosis was that I was in need of injections of vitamin b12 - otherwise my health levels would deteriorate further. The reason I am 'reiterating' the need for -'say' vitamin b12 assessment diagnosis by blood tests is that some patients do need a thorough understanding of ' what is lacking' within their health regime.

"Key points about vitamin B12 deficiency anemia

@Without enough red blood cells, your tissues and organs don't get enough oxygen. Without enough oxygen, your body can't work as well. Symptoms include weak muscles, numbness, trouble walking, nausea, weight loss, irritability, fatigue, and increased heart rate.

hopkinsmedicine.org › ...

Vitamin B12 Deficiency Anemia | Johns Hopkins Medicine"

bookish profile image
bookish

Thinking of you. I too am an interfering, B12 and folate obsessed older woman trying my hardest to encourage family/friends/colleagues with little success, in a family full of PA and B12D. My Mum died with a dementia but now known that she had an identified low folate (likely treated with folic acid, but also given medication which depleted folate further) and low B12 (untreated). Not a good combination. If the dementia is not caused by the B12/folate deficiency (either frank serum, or cellular) then improvement may be slight, but if it is the cause then treatment could help considerably. (pubmed.ncbi.nlm.nih.gov/270... and ncbi.nlm.nih.gov/pmc/articl... - oldish now but still useful) Any chance that they would consider a home test like Medichecks? Best of luck and good on you for trying so hard x

Cherylclaire profile image
CherylclaireForum Support

You are right to try. If there is the slightest chance that things can improve, even at a late stage, even slightly, it is worth getting called interfering or obsessed by your family.

I believe that for some people, myself included, getting back to anything like your old self can take a very, very long time and a lot of B12- more than most GPs would accept as a legitimate NHS treatment frequency. But is possible.

charks profile image
charks

The problem is most people actually trust doctors. They think they know best. Unlike us on this forum. Nobody understands about nutrition. Which is why a lot of people are eating their way to an early death. They think we are cranks because we tell them a vitamin is so important. My partners mother is 90. Recent research shows that the older you are the more likely you are to become B12 deficient. We have told her all about it and bought her B12 pills. But she didn't take them. She thinks that if she needs them her doctor would have told her.

Sleepybunny profile image
Sleepybunny

Hi,

Maybe they would find these blog posts that mention B12 deficiency and/or PA interesting

Tracey Witty runs the B12 Deficiency Info website.

Blog post below is about how she persuaded her mum to get tested for B12 deficiency

b12deficiency.info/a-tale-o...

About an elderly woman who found NHS treatment was not enough for her.

b12deficiency.info/christin...

There are various other categories of B12 blog posts listed on right side of page.

Martyn Hooper writes about his own experiences as chairman of PAS on his blog.

martynhooper.com/

There are some very poignant stories about elderly people, children, teenagers etc struggling to get a diagnosis of PA and/or B12 deficiency.

This is Martyn's story

martynhooper.com/about/

I understand your frustration as I have been trying to get my siblings and another family member to consider getting tested.

3rdNettydoon profile image
3rdNettydoon

Thanks everyone for such informative replies. I will read through and see what I can use to best persuade B12 testing. It's a blood test that is well worth having.

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