B12 test

Hi I fear I've been deficient for many years, digestion issues for 20 years, always exhausted hair loss, teeth enamel worn away. stuttering dizziness memory loss confusing words and palpitations (got worse)started about 3 years ago. October 2022 my health took a nose dive, dementia like symptoms, extreme dizziness, heart irregular and palpitating most of the day, confusion memory loss felt as if I was dying. Took b12 injection and it all stopped for a few days, I've had 5 since the end of October until 28th dec. Want to take a active b12 test and get an accurate result however I have been taking around 5000mg of sublingual b12 as I am just so ill, can't stop as I'm afraid of severe damage as I'm already at an advanced stage.How long should I try and stop oral b12 before testing? My sight is now blurry and I am dropping things, speech is very impeded,memory is terrible, find it hard to do basic tasks basically bedbound most of the time. I don't feel I'm absorbing much of the b12 spray and nugget in using due to malabsorption issues in my stomach. Sorry for the mistakes in the text my cognitive function is extremely low, feel on another planet. What is the best test I'd rather have bloods taken privately by an nhs approved lab than finger prick so my gp will listen to me as I've only had a serum level which was high as my diet is good . Thanks all

[deniseinmilden]

Hello and welcome!

If B12 is fixing the problem then you obviously need it so don't worry about testing - it won't gain you anything. There is no specific upper intake limit so it is very safe.

Once you have got all the improvement you think you can get with the B12, then look at other things to see if you can get further improvements that way.

Try to get as much as possible from your diet but understand that you might need additional folate, potassium, magnesium, iron and vitamin D3 + K2.

If you can take one, a broad spectrum multivitamin and mineral supplement is a good place to start. Supermarket A-Z ones are as good as, if not better than, more expensive branded ones.

Be aware that you might need frequent (possibly every day) B12 injections for life. This isn't a problem if it gets and keeps you well.

Good luck with getting yourself well again and come back to us with any questions you may have.

[Gillybean1]

Hello Rachael7000

Please do also get a 'full thyroid' panel test done as B12 deficiency and Thyroid disease are very often close related, and some symptoms overlap alot.

Unfortunately you will not get a 'full thyroid' test done by the NHS, they will only check your TSH which as many have found does not give the whole picture to get well. A full thyroid panel includes vitally, FT3, this one is crucial, FT4, also very important and TSH, TPO and TG antibodies are useful too. If any of these are low or out of range it impedes your absorbtion of B12and others such as Vit D, Folate, Iron and others. Hence all closely related.

If you are able to afford it, details of finger-prick home test kits for these are available on the Thyroid Uk site.

I hope this may help you, I know you are in a scary place right now.

Every best wish, G.

[Hidden in reply to Gillybean1]

Thank you Gillybean I did order a full health check from monitor my health advised by Mr Peacock on another thread which tests active b12, folate and thyroid,vit d amongst few other things. I've had the and t4 done recently, t4 has always just been within range 12.4 lowest range is 12 that was a year and a half ago and a recent test shows it has gone up to 14.5. Not sure what it all means. TSH is 1.1. Ferritin is always low currently at 20. Doesn't matter how well I eat. Thanks for all the great advice this website is invaluable

[Sleepybunny]

Hi, I left a detailed reply with lots of B12 info on the thread started by Knackerdandcross, just above yours.

I'm assuming you're in UK.

It's helpful to know which country you are in as patterns of treatment for B12 deficiency vary between countries.

[Hidden in reply to Sleepybunny]

I'm in UK yes I will definitely read that thankyou

[Twaddletop]

Hello and welcome Rachael.

I found out I had pernicious anaemia many years ago. I still identify with each and every symptom you describe as my levels seem to fluctuate from time to time. My GP refuses to allow me an injection sooner than every twelve weeks, which is not enough. I do SI but not as frequently as some.

I inject biologic medicines as well as methotrexate for Psoriatic Arthritis. I feel the fluctuation is most likely down to those. I do however remember how desperate I felt before being diagnosed. It’s quite frightening when you feel so bad and don’t know where to turn.

I hope you get your answers soon and find a way to get your life back.

There are many very knowledgable people on this forum who have provided excellent help and advice to me and many others. You’ve found the right place.

[Hidden in reply to Twaddletop]

Thanks so much yes it can be very isolating as it's such a unrecognised illness. I would have liked to have a diagnosis more for others than for myself as some don't believe you when you say your ill unless the doctor puts a name to it. If one more person asks me am I depressed! Yes your so right, I have indeed lost the life I once knew however low my quality of life was with years of unrecognised absorption and whatever else issues I may have, it's no comparison to how bad things are now. It just accelerated insight a short amount of time, I don't recognise myself. Thanks so much for taking the time to reply it's a godsend to have a place to ask questions from those suffering the same and who understand the maddening process with doctors and the terrifying symptoms that are seemingly a mystery to others. Got some injections booked in again by a private clinic after my test online arrives for b12, trying to not take any b12 for the week and it's absolute hell. Thanks again