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B12 deficiency

(9 Posts)
Fookinwot Sat 28-Sep-19 23:50:51

I’ve been so unwell for almost two months now, I’ve been seen by four different doctors and had two sets of blood tests.
Symptoms are;
Constant Severe nausea and indigestion
Heart palpitations
Sharp pains in toes
Dizziness/unsteadiness on my feet
One incidence of fainting
Brain fog and memory loss
Hair loss
Weakness all over
Lethargy
Can’t sleep/stay asleep

Thyroid function is normal, T2 diabetes ruled out B12 is low. No viral or infection markers in blood.

My GP has decided to ignore the B12 issue until my palpitations are investigated as she feels that’s more urgent, she’s referred for 24hr tape and rapid access cardiology clinic.
I’ve been reading up on B12 today and almost all my symptoms fit deficiency. I’m starting to think the palpitations are almost a red herring and that actually if I was treated for the b12 problem my symptoms would get better I.e the palpitations would stop.
I’m also worried that a lot of what I’m reading says that b12 needs treating quickly to prevent permanent damage.
My GP tends to get a bit huffy if I question/contradict her so I’m not sure if she’ll listen to me, I’m due to see her again next week and all the other doctors are booked up for weeks at my surgery.
Does it sound as if I could be on the right track or should I just trust the GP and wait for the cardiologist and tape?

OP’s posts: |
LiliesAndChocolate Sun 29-Sep-19 08:04:16

You can buy vitamin B12 everywhere for very little money. SO while you investigate the heart issue, I would buy it and take 1000ug a day.

However, many of your symptoms also match an Omega3 deficiency so I would ask to do a blood test for them. You will have to pay for it, I had to in Australia and it should be around 30 pounds. It is called the omega 3 index. The normal range is 8-13, mine was 3.8, dangerously low as at 3.5 you have brain atrophy, and cognitive loss. My signs were memory loss, sleep issue, weakness, brittle hair

Fookinwot Sun 29-Sep-19 10:47:27

I didn’t even think about B12 supplements! I’ll pop in to a pharmacy today and see what I can find, I’ll also ask GP about Omega 3 next week. Thanks very much.

OP’s posts: |
nancy75 Sun 29-Sep-19 10:51:00

Did they check your Vitamin D levels? I had v low vit D & lots of the same symptoms

Fookinwot Sun 29-Sep-19 11:25:31

No they didn’t, I have had Vit D deficiency in the past so that’s worth mentioning too thank you.

OP’s posts: |
WrongKindOfFace Sun 29-Sep-19 11:35:11

What about iron and ferritin? Low levels cause palpitations etc.

What was your b12 level? I wouldn’t supplement until it’s been rechecked.

Fookinwot Sun 29-Sep-19 12:25:41

She didn’t mention iron and ferritin bit I remember them being on the bloods request form. I’ll chase that up. She didn’t tell me what my B12 level was but I’ll ask that too. I’d better make a list because I will forget!

OP’s posts: |
swingofthings Sun 29-Sep-19 14:13:35

don't take b12 supplements. Most deficiencies that causes such level of symptoms are due to malabsorption, and if that is the case for you, taking oral supplements won't help. Worse, it would mess up your test if they wanted to do an active tests (you have to be free of b12 in the blood for 4 months before they can test).

You are right though that the palpitations are likely to your low levels. How long was it? The NICE recommendations for people with low b12 with neurological symptoms is to start on b12 injections right away. Your GP, like many sadly, doesn't know enough about b12 to know this. So your research and print it for them.

Agree with testing Vit D deficiency too.

Ally3279 Mon 30-Sep-19 21:31:19

Hi Fookinwot,
swingofthings is right - assuming you're not vegan or strict vegetarian, your B12 is low due to malabsorption and won't be fixed by taking oral B12 supplements (and, as pointed out, will complicate a further blood test because it will detect the B12 you've taken but won't be absorbing).
I was diagnosed with a B12 deficiency a couple of years ago - my symptoms were extreme fatigue, muscular twitching and a 'dead' left leg. I was investigated for MND and MS. The whole experience was exhausting though as my GP initially responded in exactly the same way as yours. Thankfully my sister is a dietitian, she suggested I download the NICE guidelines, take them along to the GP and insist on starting treatment. (As you are symptomatic, treatment is B12 injection every other day until your symptoms have resolved/significantly improved, then every 3 months for the rest of your life). I'm not gonna lie, I had to fight for this, but I was feeling so awful I wouldn't let it go. Thankfully my practice nurse was extremely sympathetic and still works with me to tailor my injections dependent on how I'm feeling (which is often extremely tired and twitchy again towards the end of the 3 months). When I saw a neurologist (whilst still being investigated for possible other conditions) he was also completely unaware of the NICE guidelines and thought they were ridiculous, I could have cried at his ignorance and dismissal of my symptoms.
The good news is that I do feel much much better and you will too. But you may have to fight for what you need and what you're entitled to.
There are a couple of organisations that may be helpful - I contacted the Pernicious Anaemia Society in desperation and they were great.
Good luck!

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