Wait between B12 diagnosis and loadin... - Pernicious Anaemi...

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Wait between B12 diagnosis and loading doses?

AmHW
AmHW

Hello,I’m new here. I’ve just been diagnosed with a B12 deficiency (levels of 75) after some blood tests. I initially went to the GP complaining that I hadnt been feeling myself for a few months- physically exausted, very achy, a bit depressed, nausea etc. I thought it was probably just side effects from my hormonal birth control but she wanted to run some blood tests and it turns out i’m B12 deficient.

Anyway, the Dr said to book in for the loading doses, 1 every other day for 2 weeks, however when I spoke to the surgery to book this they can’t fit me in until the 12th August. I’ve been reading up on B12 since then and I’ve scared myself thinking the wait could lead to permanent nerve damage. I’ve had mild pins and needles on and off for a while, and my balance has been a bit bad but I hadn't thought anything of it until I started reading about the B12 deficiency. Now I realise that they could be connected.

Did anyone else have to wait a few weeks before starting the loading doses- is that normal? Or should I be pushing harder to get them sooner. I’m not sure any amount of me complaining will get it booked in sooner (as my GP surgery is notoriously slow and rubbish) but now I have worried myself.

12 Replies
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I had a wait as wasn't told blood results. I got them printed off!

Directly I knew I pushed for the loading doses which started 5 days later. As the delay from being very ill to first injection was 5 weeks i think too long. As you know it takes years to become that low . I would push fit them to start ASAP before neurological symptoms startsuch or get worse. Get a telephone appt. With the dictator as quicker to 'sanction them?

Best to get them ASAP . That’s awful to make you wait for a month . Tell them how terrible you are feeling . An injection takes less than 5 minutes .

Perhaps the wait is for a nurse. Doctors can give them! so can nurse practioners. I've had them from these when nurse too booked up. I hope helpful

While the delay in giving treatment might well be 'normal', it is certainly inappropriate.

I had a somewhat similar experience to you. When eventually my serum B12 was tested (privately, after a reluctant referral), and it measured in the low sixties, I had to wait for a confirmatory repeat by my GP. The process of getting an appointment to arrange that, and another appointment to hear the result, took several more weeks before I was started on loading doses Wrong! I have since been confirmed as having some axonal loss (non-recoverable).

Push for urgent treatment. Rest well, eat well, until feeling much better.

Good luck.

Thanks for the replies everyone. I think I will phone the GP Monday and try to ask more questions, and push to see if they can treat it sooner. It is definitely waiting for a nurse to be available that is the issue, the receptionist was very ‘ummm and ahhh’ about when they could ‘fit it in’ and wasn't at all helpful, so the GP might not even be aware its taking that long. Also they have given me no indication of whats causing it, whether its a stomach issue or pernicious anaemia or anything, so I definitely have more questions. I’m not a vegan or vegetarian so I struggle to see how its diet related. I am at least glad to have a diagnosis though because I really thought I might be going potty and imagining all these symptoms and that it was just ageing or something, but i’m only 30, so I knew something wasn't right!

Nackapan
Nackapan in reply to AmHW

I still haven't been given a reason. My parietal cell antibody test came back negative. Have you had that blood test? I assume it's absorbtion as have been told b12 injections for life. Yes try and push for loafing doses ti start and see if what else your bloods showed.

I wasn't given a reason either but I definitely know what caused mine.

If you get chance instead of ringing on Monday, I would call in to the surgery & speak to them.

Don't worry, you're definitely not going "potty"

I think until diagnosed everyone of us felt the same, and what you will read a lot of is the words, "I felt like a hypocondriac due to the many symptoms"

Hope you get them asap & start to feel better soon.

If they can't follow protocol because they would miss one or two of the days, tell them to start anyway. might help to mention that in the Netherlands loading shots are twice a week You just want to get your first ones asap.

I have just found out that my aunt has this condition- she’s been having B12 injections for 20+ years- never knew!! So perhaps in my case there may be a familial link... who knows!

Same happened to me even when treatment was finally agreed by the doctor I had to wait two months to see the nurse...... As it had taken eight months to get this far Id taken the decision to self inject months earlier. I figured I was the one who ends up living with damage not them even if its their fault for being so slow!!

AmHW
AmHW in reply to waveylines

True, I read theres a spray you can get for under your tongue from Holland and Barrett- I might pick one of those up and give that a go until the injections start

I thought i’d update anyone who is following this thread. I went back to the GP and asked more questions. The won’t bring my B12 injections forward as no one available to do them so I am still having to wait until Mid August. I’ve brought a B12 spray that you spray under your tongue to use until then. No idea if it’s having any effect yet as I only got it yesterday.

I asked if they knew what was causing it and the Dr said they wouldn't do any further testing to find out unless I was anaemic, which i’m not. I’m assuming she means a different type of anemia to pernicious anemia because how would they know I was or wasn't unless they tested for it (which they definitely haven't).

So i’m stuck in a limbo now until my injections. I did relay quite how much the tiredness and brain fog is effecting me, but there was little sympathy 😔

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