B12 Injections & testing: Hi all. I... - Pernicious Anaemi...

Pernicious Anaemia Society
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B12 Injections & testing

Ritchie1268
Ritchie1268

Hi all.

I just thought I would ask if there was any such test available where you can test your B12 levels at home & get the results at home instead of having to send blood samples through the post & wait days for results, which is what seems to be the norm after looking online?

I was diagnosed around 9 months ago, feel great after the injection, then like many others, feel terrible again before the next 3 monthly injection!

I don't want to keep going to the Dr for a blood test in-between injections to test my levels.

Thank you

Ritchie

17 Replies
oldestnewest

There is no such test.

Besides, blood levels are irrelevant once injections have started.

Ritchie1268
Ritchie1268
in reply to fbirder

I know they are but I believe my Dr would be willing to give me the injection, (if I needed it) sooner rather than just wait every 3 months. Hence the blood tests to check the levels.

Just thought I would ask as they do similar kits for blood sugar, cholesterol etc etc

fbirder
fbirder
in reply to Ritchie1268

Like wedgewood says, you can try to get more frequent jabs based on the return of your symptoms. But many people find doctors will refuse, leaving self-injections as the only option.

It's very unlikely that your blood levels will drop below 'normal' in the three months between injections. Just why some of us need to be 'topped-up' more frequently is, at the moment, a mystery. But it's plainly not because of low serum levels.

What you need to do is get more regular injections that keep the symptoms at bay . You can try to get that at your surgery , but if you read the posts on this forum you will know how difficult that is, and why some of us have to resort to self - injection .

Sorry, but as im relatively new to PA & B12 deficiency, I don't fully understand yet.

So, all I was asking was, I felt the best I've felt for years after the injections then, 6wks before my next injection, I felt normal again, very low, aches, no energy, couldn't be bothered etc etc.

I spoke to my Dr about it & he said he had no issues at all giving me a B12 injection earlier than 3 months but, I'll give you a blood test first to check your levels.

The test came back as only slightly below normal B12 levels. That was a month ago & I'm due the next injection on 29th October.

All I'm saying is, as I know loads of people need a more regular injection than the standard every 3 months. I believe I'm one of those & my Dr is willing to give it me earlier also but, to save me pestering the Dr surgery a month before my next one is due & due to how I now feel daily, surely there is a test you can do at home that tells you what your B12 levels are, without going to the Drs or posting blood to some lab!??

Then if low, I can ring my Dr & say look, this is my B12 level after 8wks, can I have the injection sooner instead of waiting for the one at 3 months etc.

As I'm relatively new to this, I'm still finding my feet & don't fully understand, if there isn't a kit out there like blood sugar etc where you can test your B12 levels without going through the pain of posting blood or making a GP appointment before the 3 months then why isn't there & they're missing a market that does actually need this??

It's ok saying "I self inject" but, how do you know, apart from how you feel if your B12 levels are low without testing your actual levels which is exactly what I'm trying to find out.

What if your B12 levels are high & it's actually something else that's responsible for how you feel? What happens if your B12 levels are high & you still "self inject" then what??

So, all I'm saying is, I believe my B12 drops before I'm due the next injection at 3 months & for convenience, I want a home test kit that tests my levels, there & then. Then I can ring my GP, tell him my B12 levels & he can then say right, show me & I'll give you the B12 every 2 months instead of every 3, so you don't feel like total crap for a month etc.

Does that make sense?

Your B12 levels have no meaning once you start injecting .Once injections start , testing for B12 levels is not necessary . There is no home -test kit . You cannot overdose on B12 . It is your symptoms that should determine when you get an injection not your B12 levels . If injections get rid of your symptoms , then it’s B12 that is causing them .

There has hardly been any research done on B12 deficiency and Pernicious Anaemia ,so we don’t know why some people need many more injections than others . But we have to accept that .

You need to read through the pinned posts that you will find at the top right ,and you will start to understand the nature of B12 deficiency and Pernicious Anaemia. Also our Chairman has written books on the subject ( Amazon U.K. , look for Martyn Hooper )

When you feel the symptoms returning , you need an injection , and then after trial and error you will find out how often you need to inject to avoid experiencing any symptoms . I found out that I need an injection every week . My doctor would never have sanctioned that . But I feel so well now , so it’s what I need . If my B12 were tested now , it would be off the scale . I’ve done this for 3 years.

I know your argument seems to make sense , but it isn’t how PA works I’m afraid . Just accept that you need more injections and try to get them from your sugery ,.so that you don’t need to experience the awful symptoms .If you can’t get them , I recommend self-injection , which is cheap and convenient .You would get help on this forum if you decide to do that . Best wishes .

Thank you!!!

What you say does make actual sense in this crazy world we're living in right now!

I was just trying to look at it from a general common sense angle but, I know that common sense no longer exists in the UK currently!!!

If it works for you then great!

Good luck & if it does work then, who is to argue the fact that what you're doing is wrong. It obviously isn't if it works for you!!!!

Thank you & take care.

I maybe contacting you direct in the future to see how I can help myself as you have so rightly done!!

Thanks again!!

Yes , do get in touch if you need any help . I would honestly be pleased to help you .

Gambit62
Gambit62Administrator

I think Blue Horizon's offer a home test kit that includes B12 but I'm not sure how accurate it will be and GPs can be a bit reluctant to use the results.

You will probably get more of a response if you post on the TUK forum.

Most on here would go regard the cost as a waste of time and go by symptoms.

fbirder
fbirder
in reply to Gambit62

I believe that BH do offer a finger-prick test. But you have to prick your finger and get several drops of blood into a container and post it to them.

Thank you! But I don't like the thought of posting my blood through the post.

I guess it's down to the fact that GP's still don't know enough about PA & B12 deficiency, so I'm guessing we'll still all just have to suffer until the day this useless government actually wake up, so we could be waiting a while!!! 😉

The Chairman of the PAS , Martyn Hooper is doing great work to get more research done , but the wheels turn very slowly . But we will get there. In the meantime we help eachother . Welcome to the PAS . You won’t regret having joined.You can learn a lot from just reading the posts .

I have just ordered Martyn's book via Amazon. Thank you so very much for the advice, I look forward to reading the book that has 5 stars after over 40 reviews! Says a lot really!!

I've just ordered one of Martyn's books from Amazon & very much look forward to reading it, so thank you very much for that!!

My story is a very very long one, so, to cut it as short as possible; here we go!

After starting work aged 14 & working everyday,

(I'm now 50yrs old)

I then started with a concrete company aged 18, where I was hand stacking over 3000 concrete 125kg slabs per shift, before manual handling was ever even heard of!

This wore my back out over the years & after suffering for many years, after an MRI scan I was then diagnosed with

"Degenerative Disc Desease" in my back which was very painful - still is to this day & getting worse!!

After turning down morphine from my then GP due to worrying about how strong it was, was then put on a "wonder drug" called Oxycontin, new from the states etc.

After 3 yrs I was addicted, increasing upto 1500mgs per day over 9yrs, enough to actually kill 2 grown elephants plus some!!

I had a great job, operations manager, paying 40% tax, company car etc, but then I lost everything due to this addiction!

Now been free of this Oxycontin for over 3 years but, the after effects remain. Memory loss, brain fog, suicidal thoughts, aching muscles, etc etc etc!

The manufacturer of this drug, Purdue Pharma in America, have been found over 700 million dollars to date in the USA for Killing many many thousands through overdose!!!!

Was diagnosed with severe mixed sleep apnoea where I would stop breathing 80 X per hour per night. That's now being treated via an ASV machine that keeps me alive at night. Then my testosterone levels were zero, so I had hormone injections, which thickened my blood & gave me acne, turning me into a spotty teenager aged 50 so I've now stopped them!

After a full blood count, was diagnosed PA & B12 Deficient. Needing injections along with Folic acid tablets.

After the 2 weeks & first 3 monthly injection I felt better than I felt for many years. But now, I feel how I used too, very low, no energy, exhausted after doing stuff I used to just do with no worries at all!

That's all I was looking for really, a home test that would tell me that I needed an injection before this useless government actually say I needed one. There are loads more that I put down to the effects of the Oxycontin for years but now I'm thinking is it the after effects of the legal Heroin drug my then Dr prescribed or is it the B12 etc, which I've read, most heroin addicts suffer from.

Guess I was a heroin addict, unbeknown to me, addicted via my "trusted" GP!!!!

Sorry for the rant but, that's my story.

Ritchie

that's a rough experience ritchie,i do think all chemical medications deplete b12 as well as the ones known for it,i would go with the advice above and have an injection when you feel you need it,getting your health back is more important than blood tests at the moment

Thank you & thank you for your comment

Thank you!!

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