B-12, hashimoto, spine decompression - Pernicious Anaemi...

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B-12, hashimoto, spine decompression

Lovell326
Lovell326

Hi

I have all the symptoms of b-12 deficiency. My levels when first checked 5 years ago were at 800 now they are 300 - they have consistently dropped but the Nhs says they are fine. The problem is I have had half my thyroid removed as I had multiple large modules and when tested they were abnormal, I was told then it was hashimotos disease that was four years ago and even though I have symptoms when I get bloods done thyroids come back as normal ( they did as well before the surgery but the dr ordered an ultrasound and that is when the problem was found ) then two years ago I was having numbness down my arms and send for an mri they put me through emergency surgery as my spinal cord was so compressed it was at high risk, I was told I have arthritis in the spine, spondylitis and recently had a routine mri for the neck and now told it’s narrowing again - but the reason I am writing is because as of late I have cramping in my arms , legs , fingers , neck and it’s constant sometimes my hands shake I have numbness and pain down my arms and legs , I’m confused I forget everything , my eyesight is deteriorating, I’m exhausted and tired all the time like I’m in a fog or haze and the dr keeps telling me everything is normal all my bloods are fine. My health has put me into a depressive state and I’m wondering if something as simple as b-12 would help , they are denying it through Nhs until I am 180 levels so is there anywhere I can get it or anything I can do? I am 50, I keep active as much as I am able to but it is very painful to walk long distances as all of my joints shoot pain - I am on gabapentin and zapatón when I need it and now they have given me amitriptyline.

4 Replies
Gambit62
Gambit62Administrator

A drop from 800 to 300 is certainly a significant drop in levels and is indicative of a B12 absorption problem. There are is a strong cross-over between PA and hashimotos - 40% of PA patients develop hashis and studies tend to show 10%-40% of hashi patients going on to develop PA.

If you are asking about self treatment then you could try high dose oral - 1000mcg+ - which can be effective - this isn't a prescription medication so you can obtain B12 easily.

Injectable B12 is prescription only in the UK if being used for medical purposes - but it is over the counter in some european countries - including Germany - many on here use German on-line pharmacies to source injectable B12. Although the protocol in the UK is for B12 to be injected IM it can also be injected sub-cutaneously, eg using insulin needles, which seems to be as effective.

Lovell326
Lovell326 in reply to Gambit62

Early on when they first tested my bloods they said there was a problem with my absorbing B-12 and I could possibly develop pa later on but it seems now 4 years later I can’t get any answers just everything’s fine and I keep feeling worse. Thank you for your response i will continue trying to talk to the gp x

Gambit62
Gambit62Administrator in reply to Lovell326

what a bunch of idiots.

you have a problem absorbing B12 that will lead to a B12 deficiency if left long enough - and to be honest B12 deficiency is so damaging it would be better to treat the absorption problem when it is picked up rather than waiting for you to become really ill, which is what has happened.

PA is a misnomer - it is likely that it was the B12 absorption problem that was picked up.

Unfortunately the world is full of idiots like that.

Would suggest that you join and contact the PAS directly

pernicious-anaemia-society....

pernicious-anaemia-society....

unfortunately you need to start quoting the BCSH guidelines at them to try and get them to treat you properly but their understanding of B12, like many medics is pretty poor.

You can find the guidelines here

onlinelibrary.wiley.com/doi...

your GP can access them through the BNF

The thing to drum into them is that

a) you can be deficient well into the normal range

b) if you have neurological problems they should be treating you now rather than relying on a test (serum B12) that is known to be seriously flawed if used as a single measure. It will miss 25% of people who are B12 deficient if taken as the only measure. Symptoms are really important.

c) Macrocytosis - larger rounder red blood cells is a symptom of B12 deficiency, and hence of PA - but isn't present in 25% of people first presenting with B12 deficiency.

How is your thyroid being treated ? I would also post on Thyroid UK as Hashimotos can cause so many issues with absorption too. I have Hashimotos - a B12 issue - spinal problems and Crohns.

thyroiduk.org

Happy to help ...

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