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B12 deficiency advice. ESSEX specialist?

(14 Posts)
nobodysfool Wed 13-Jun-18 09:56:37

My mum was diagnosed with b12 deficiency a few months ago. They gave her b12 injections every other day for 2 weeks. She had a massive improvement in her energy levels, concentration and more importantly her breathing. She normally gets very breathless doing the slightest bit of walking or movement.
She had about a month of feeling great then it has all gone down hill again.
She is due another blood test at the GP's to check the levels at the end of this month.
Are there any specialists is Essex that can look into this further? What should she be asking for? Thanks.

NerdyDad Thu 14-Jun-18 10:04:05

Hi,

Go to the Pernicious Anaemia forum on Health Unlocked and look up the Pernicious Anaemia Society.

GPs are not usually very good with B12 deficiency, for example a blood test after an injection, even a month later, will not be very helpful. Most likely B12 levels may still be elevated, yet the patient has B12 deficiency symptoms.
GPs, especially recently, have been reluctant to put people on regular injections, though maybe your doctor will be different.

If you can't manage to convince your doctor to help there are very strong B12 tablets that give 1mg. Those usually do the trick. Of course a B12 test will show that B12 levels are probably fine and no treatment is needed if your mum does use them.

9amTrain Thu 14-Jun-18 22:52:42

Active B12 is more accurate than serum B12 (what the NHS tests), along with methylmalonic acid, homocysteine and intrinsic factor antibodies (plus folate and ferritin). This will give you a more complete picture, even at optimal levels serum/total B12 doesn't rule out a deficiency. You can order these tests yourself privately if you can't find a competent doctor.

9amTrain Thu 14-Jun-18 22:54:10

She can also self-inject more frequently, i.e. buy the supplies from Europe and a nurse should be able to show her how to do it.

Dolceandgabbana14 Thu 14-Jun-18 23:38:43

I'm B12 deficient. I have been using a spray for a week and am noticing a difference already. It's the strongest I could find and comes from Amazon. It might help to boost your mum's levels between injections? Search for 'Better You Boost B12 Oral Spray, 25ml'. It is absorbed more easily through the membranes in the mother and avoids any potential absorption issues in the gut.

Ktay Thu 14-Jun-18 23:46:58

I don't know much about this but have they tested for coeliac disease? That turned out to be the cause for my dad.

Le1890 Fri 15-Jun-18 04:45:30

I also bought b12 patches with high dose. I keep meaning to do a trial and get the blood test to see if they are working.

It sounds like your mum needs long term treatment rather than just a couple of injections. I’ve been b12 deficient for years and folate and ferritin. If I don’t take the supplements the levels plummet. Had everybblood test under sun and can’t find a reason.
Good luck and hope you mum gets relief soon.

Pixiedust2017 Fri 15-Jun-18 05:47:54

I have a B12 deficiency with megaloblastic anemia. I take sublingual B12 tablets 1000mcg daily. They work really well for me smile I also take spatone iron supplements although I don't technically "need" it but just to make sure I am getting enough iron too keep my blood relatively healthy.
As to your question about specialists, I am constantly asked by my doctors if I am an alcoholic (although not in those words) as alcoholism can contribute to low B12 levels. I hardly drink at all. I was referred to the hematology and oncology department at my local hospital to check there were no oncology issues going on. The specialists there said there was no known cause and just put it down to my blood just being abnormally different. I have to have yearly check ups from now on just to check it is OK. My only symptom really seems to be I am tired all the time. Could also be normal as I have a 5 month old baby :p

YNK Fri 15-Jun-18 10:27:20

Join this amazing FB group.

www.facebook.com/groups/PAB12DSupportGroup/?ref=br_rs

nobodysfool Fri 15-Jun-18 19:33:51

Thank you everyone you have been a massive help. It's all new to her/me so we are unsure what or where to go. I will look into all you suggestions and pass them on.

agedknees Wed 20-Jun-18 21:16:59

Metformin can also cause vit b12 deficiency if it’s been used long term.

samanthap411 Thu 21-Jun-18 16:03:49

I've also been feeling really low energy and unmotivated recently. I changed to a vegetarian diet not too long ago and my friend mentioned that this could cause a B12 deficiency which would maybe explain being tired all the time.

I'm thinking about trying some supplements but did this for vitamin D a while ago and was never quite sure if it made a huge difference! Has anyone actually tracked their B12 levels and seen if the supplements made a difference? I'm wondering if a GP would even do this or if I should use some kind of private company?

Pixiedust2017 Fri 22-Jun-18 00:06:13

Your GP can order blood tests that will determine if you are B12 deficient and how effective any supplements you take after that are. If you are thinking about getting tested for it then I would not start supplements until after the test so that you get a real picture of how your levels are before starting.
GP will only order tests if medically necessary. If they think they are not you can go private to get them done.

samanthap411 Fri 22-Jun-18 11:37:32

Yeah, should probably get some before and after results!

Hmm I struggle to even get an appointment with my GP let alone follow-ups as well. Has anyone actually used any private companies to get this stuff checked? I feel like doing it that way will probably save me a lot of time and energy!

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