B12 deficiency diagnosis

[Hollybushroad]

Hi allI previously posted on the forum re getting diagnosis of B12 deficiency. ( My mum had PA)

My recent medichecks

Active B12: 48.1 pmolL (37.5-150)

Folate.: 3.2 ugL (3-26)

Medichecks advised MMA test which I have since done and awaiting result.

After alot of hassle I eventually got my GP to check my IFABs in view of my mum having had PA

NHS result:serum B12: 284 Ng/L (191-77)

Folate: 4.6 ugL (3-26)

No IFAB result yet as surgery tell me it can take a further 2-3 weeks for antibody result to come back.

My question is : is it ok to start sublingual supplementation now whilst waiting on IFAB result and medichecks MMA. result ie. In that no further tests needed???? Surely🤔

I don't want to skew results of any possible further tests but I'm really anxious to start supplementing ASAP as I really do have alot of worrying symptoms of B12 deficiency esp memory problems/ general cognitive decline and pins and needles in feet and some fingers. Usual fatigue symptoms but that may also be related to my hashimotos. Hard to decipher what's causing what.

So in summary can I start supplementing whilst waiting on results as surely no other tests needed??

Thank you for any guidance

[jade_s]

Personally i would wait. Tests can go wrong and so on. I had one blood test where half the stuff didn't come back due to insufficient blood 🤷‍♀️

If your mother had PA you're more likely to have it as well. You might be better off going directly on injections. Especially with neurological symptoms. Once those have resolved on every other day injections, then you could try tablets. Just my nonmedical opinion.

[Hollybushroad in reply to jade_s]

Thank you jade for your reply.Yes I know what you are saying re waiting.....I'm just so impatient as can see an increase in neurological symptoms. I'm concerned even if I do have positive IFABs that GP may not treat me correctly with correct frequency of B12 injections to relieve neuro symptoms. I don't really have much faith in her knowledge generally.

[jade_s in reply to Hollybushroad]

Yes I know your pain, it's torture waiting 😭 It's not so important for IFAB, but MMA and other related tests will be affected by supplements. Hopefully it won't take too much longer now 🙏

We all understand your concern and many have been in that position. Thus many of us self-inject.

Sleepybunny's posts have great information on requesting correct treatment with injections from your GP, it may be worth looking into that.

[Hollybushroad in reply to jade_s]

Thanks jade. I will look into SBs info

[Hollybushroad in reply to jade_s]

Coincidentally enough my GP just rang me with IFAB results today. She said they were negative. I again highlighted my concerns re neurological symptoms and need for injections but she completely dismissed it and said my results were "normal"....I hate that word so much when it comes to bloods! She patronisingly advised me saying if I was concerned to buy OTC supplement. I don't have the energy any more to argue with these people ☹️

[jade_s in reply to Hollybushroad]

Gahhhhh how frustrating 😖😥

I too hate the word "normal" with a passion!

Let us know if you want help going it on your own.

Sending hugs 🌺🦋💕

[Hollybushroad in reply to jade_s]

Hi jade....yes I would really appreciate your guidance re ordering my own supply of B12 injections. Could you send me links also for purchase of needles,syringes swabs etc.I know there's info on the forum somewhere about all this but my brain is just not functioning lately 😭

Also am I right in saying that I can't take a folate supplement until my B12 is treated first?

[jade_s in reply to Hollybushroad]

I sent you a chat message with ordering info. Any questions, just ask

For the first injection, it's best if you go to a health spa type place. There is a rare possibility of anaphylactic allergic reaction, so the 1st one should be in a medical/healthcare setting. If you google "b12 injections near me", you should be able to find something near you. I know of the Get A Drip chain, and there are others, just depends where you are. If you can't find anything, let us know about where you are and we can help.

Yes best to wait with folate until you start injections.

Neurological symptoms according to guidelines require every other day injections until they disappear or 'stop improving'. I would buy enough boxes to do at least several months of SI every other day, and see how it goes from there. The ampoules should be good to 2026 so they won't spoil if you don't need them as frequently.

I suggest keeping a daily symptoms log. That way you can tailor the frequency to your own needs.

[Hollybushroad in reply to jade_s]

Thank you so much jade for all your helpful advice. Much appreciated 👍

[Ryaan]

Hi

You can order B12 Hydroxocobalamin from the German site Versandapo de which are very good and a lot of people get them from there. It’s been a while since I last ordered but have recently checked and they do have them.

You will have to register with them with email and address etc which is a quick process. I think if you open their page (Versandapo de) using the Chrome browser it will come up in English. You go to the bottom of the page and select country to get it in English and you can pay using PayPal or by Amazon if you have an Amazon account.

You are right about GP’s not treating PA properly, they might give you the 6 loading doses but then will either give you a 3 monthly injection or 8 weekly injection as they follow the guidelines and don’t look at individual needs such as an injection every other day.

After the 6 loading doses if you self inject you can inject weekly or more frequently. I was personally deficient in B12 and in a bad state with the symptoms and I injected once weekly and after 3-4 months I noticed a huge improvement. I have been SI (self injecting) for 7 years and it was the best decision as doctors would only agree on one injection every 8 weeks.

Sorry I don’t know about ordering the syringes and needles as I get them from local chemist but most people inject intermuscular in to the thigh area using the blue needles.

The self injecting method in to the thigh area is quite easy and can be found on YouTube if you search how to self inject B12 in to the thigh.

[Hollybushroad in reply to Ryaan]

Thank you so so much for your very helpful info. Much appreciated 👍

[srf831]

Your MMA test should be more definitive, which you can then send to your GP.