I posted recently about my mum stopping her pregabalin and iron tablets and how she was having a few symptoms which we werent sure were withdrawal effects of pregabalin or just pred side effects.Anyway we seemed to get over that and she was feeling better until last week when she started getting quite breathless so i called doctor and he arranged blood tests to check all her vitamin levels.
We were at doctors yesterday and he has said her vitamin b12 levels are really low and she now has to have b12 injections 5 within 2 weeks then 1 every 3 months and he said she should feel better very quickly. Im not quite sure what causes b12 deficiency does anyone know?
It just seems to be one thing after another and to be honest im bit at a loss as to why it wasnt picked up before as she gets her bloods done every 2 weeks. I know they are only checking her CRP and ESR levels on these tests but she had a full blood test done a month ago to check her iron levels were ok before stopping her iron tablets so wouldn't her vitamin levels be checked then or do you need to ask for specific things to be checked.
Its a worry as a lot of symptoms of vitamin deficiencies are similar to pred side effects so can be missed and after her PMR/GCA was missed and not picked up till she went blind in one eye i feel im constantly on edge.
Thanks again for reading and i do apologise for the rant.
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Buchanan16
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You have to ask specifically for tests of any sort, except the ones that are part of what is called a panel of tests.
Low B12 can be due to a diet low in it - vegan is most well known but vegetarians can be at risk too. It can also be a symptom of pernicious anaemia which is caused by low stomach acid leading to malabsorption, it is usually an autoimmune disorder but gastric trophy can cause it in elderly patients. Low acid can also be caused by overuse of PPIs which we are frequently dished out willy nilly alongside pred so older patients on pred have a barrage of potential risk factors.
If they are using injections they must have suspicions that it is low acid for some reason because injections are guaranteed to be absorbed,
My mum isn't vegetarian but she doesn't have a good appetite so doesnt eat big meals.She has also had bother with her stomach over the years and had various tests which were all clear. That was why she was initially put on esomprazole which helped tho over the past 4 or 5 years she was only taking them occasionally. She is also a very anxious person which can affect her stomach to.
My aunt suffered from pernicious anaemia and had b12 injections for many years but nobody has ever mentioned that to my mum and the dr yesterday didnt say much other than her b12 was quite low and injections should help quite quickly.
I unfortunately didnt know much abput it until i came home and used dr Google as usual.
If the B12 injections work as they should she may have more energy. Hope there is nothing else - it always seems to be one thing after another doesn't it!
I admire the way you are on top of things and your mother’s doctors give you respect and act quickly. I don’t know what causes the deficiency. I would Google it perhaps. I take it because the deficiency symptoms would be unpleasant - so just in case. I doubt I could convince my GP surgery to test me. I was extremely low on vit D3 at the outset of PMR and was put on a high dose.
My sister is having a flare up with RA, after a long wait for appointment, she saw a GP , they said they would do blood tests, she asked if it would include a thyroid test, he rudely said to her, I do know my job!!…..the surgery has been in special measures for quite a while!….
When her B12 was tested, as part of normal bloods a few months ago, my son's MIL GP surgery went into panic mode because they were so low. Because they couldn't get hold of her by phone, they ended up sending a paramedic to knock on the door about 11pm at night - telling her she need to go in for a blood transfusion. She refused to go there and then [hubby not well], but went in next day.
Since then she has had endoscopy & colonoscopy to check if internal bleeding or anything more serious - fortunately nothing showed - the rest of family are convinced it's probably diet related...but she won't be told.
She is now on tablets and being monitored regulary. She is about 15 years younger than your mum, but age can be a factor... as with all things the body doesn't work as well as it did..
The gp said her iron levels were fine now so decided to stop iron which had already been reduced to 1 tablet a day from 2 a day.She had an issue a couple of years ago when she was breathless and it turned out she had folate deficiency and was put on a course of folic acid for 4 months and then that was stopped.
We have been very vocal about getting things like her vitamin d vitamin b6 b12 vitamin c etc checked since she started with all her aches and pains last year and we kept asking to get them checked but at that time they were okay.
My mums had bother on and of with being a bit anaemic since she was a young girl tho never anything serious.
Our doctors have been great and any time we call someone calls right back and we can always get an appointment that day or the next. They have been great with letting us do our own thing with tapering and yest he gave me a prescription for 5mg 2.5mg and 1mg tablets as we are now down to 15mg where i intend staying until her b12 levels are back up.
Im just annoyed it wasnt picked up as i feel it shld be checked when my mums had issues before and shes on an omeprazole a day.
The clinic just phoned(not sure why our nurses at surgery can't do it )and arranged apps for next mon wed and fri then 2 days following week so hopefully should see an improvement quickly.
No idea what causes B12 deficiency. Could be many different things. But there is a test for pernicious anaemia - the anti-intrinsic factor antibody test (i think). If your Mum has been suffering anaemia on and off since childhood, they really should have done this test a long time ago. This is a really underdiagnosed condition and most sufferers arrive at a diagnosis after a long and sorry tale of trial and error, after years of exhaustion and sub-optimal engagement/productivity. (All that lost time!) But it's a good thing that they've decided to let her have the injections. They really do help. Another thing to look out for is iron defficiency anaemia - apparently this is separate and different from the anaemia caused by B12 deficiency. (The stomach is supposed to produce intrinsic factor A which helps in the absorption of Vitamin B12, which is then used for making blood. The non-production of intrinsic factor A is understood to be an auto-immune issue.)
Sometimes B12 deficiency can lead to neuro issues - tingling, numbness, etc.
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