Being passed from pillar to post - any ideas for expediting diagnosis and treatment?

Hello - this is my first post here so I'm not sure if anyone can help.

Around 4 months ago I went to my doctor as I was feeling tired all the time, and - most noticeably - I was struggling to exercise to the same level as I was used to. I was sent for blood tests and after discussion about my family history and various 'stomach-related' complaints, the doctor suggested I have my B12 levels tested.

Within a few hours of my results coming back I was summoned back to the doctor urgently and told my B12 level was 97 and that I needed further blood tests - and to begin a series of B12 loading doses, with quarterly injections thereafter for life.

After the loading doses, I felt great once again and my energy levels jumped up.

As it happened, I ended up having further tests and was also hospitalised, which led to a colonscopy. This has led to an interim diagnosis of ulcerative colitis, which is being further investigated and biopsied to check it is not Crohns.

Anyway, long story short...I really want to make sure I'm not being fobbed off, of missing anything. The doctor (GP) told me that B12 deficiency was 'one of those things' and that the blood tests indicate I do not have pernicious anaemia. The consultant at the hospital tells me I have UC.

However, I am now 2 months since my last B12 injection. I have 1 month before the next one and I know that my body is low on B12 again. I'm absolutely shattered: can't exercise, struggling even to walk the dog. I have brain fog and I'm incredibly unmotivated and irritable.

Now, I know that the doctors are saying I have UC, but is there anything else I need to be pushing them for?

Can I have B12 injections more frequently than 3 months and how do I persuade my doctor to allow this? They're not very friendly, but I know my body and I know I am low on B12. Should I be asking for another blood test?

And - more importantly - why are the injections not lasting the full 3 months? I can't really live my life feeling wiped off 1/3rd of the time.

Anyway, I can't help but feel there are lots of things going on at once, all of which is confusing the picture. I'd really like to untangle them so I don't miss something, or don't allow one diagnosis to mask something else.

5 Replies

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  • There are several people on here who find that they need injections more frequently than every 12 weeks (nobody knows why). Unfortunately, without neurological symptoms that is the recommended treatment. You could try and persuade the doc that your mood changes are neurological - and that the BNF (the doc will have a copy) says that you need jabs every 8 weeks.

    the blood tests indicate I do not have pernicious anaemia.

    There is no blood test to show that you don't have PA. There is a blood test (for anti-IF antibodies) that, if positive, shows that you do have PA. But 50% of people with PA give a negative result.

  • Thanks for your reply. I actually saw the doctor this evening and he said that because my original B12 score was 137, this wasn't considered that low and so he would be very surprised if I needed injections more frequently than every 3 months. But at the same time, you know your body, know what I mean? I know how I feel is exactly how I felt before - and my sporting performance (e.g. running on the treadmill) doesn't lie; I can see a measurable gradual drop in my energy levels over the past few weeks. I don't actually feel very safe driving, to tell you the truth.

    If I am honest, I am actually thinking that it might be worth paying to have some private tests to see if I can expedite this. I've been told that the soonest I can have the blood test at my GP is 28th December and the next slot for injections is 17th January, which is just crazy: I don't really want my Christmas ruined and I don't want to go on another 4 weeks feeling whacked out.

  • further testing of B12 levels after loading shots isn't going to be significant in terms of how you need to be treated unless it comes back low.

    Nobody seems to be able to find any scientific evidence to actually support the 3 month maintenance regime ... and personally I've yet to come across anyone who actually manages to thrive on 3 monthly injections - when hydroxocobalamin was originally introduced in the UK the frequency was monthly and in other countries using hydroxocobalamin (eg Germany) it remains monthlyfor maintence - though not even that is enough for many

    you might find this poll - albeit rather old now - interesting

    healthunlocked.com/pasoc/po...

    If you GP thinks that 137 is only just low then that rather implies that they (lime so many others) don't really know much about what B12 is and how a deficiency works. You could try pointing him at these pages on the main PAS website

    pernicious-anaemia-society....

    Bit confused as post implies level was 07 but response to fbirder gives 137 - is the post a typo?

  • yes, possibly a typo. My level was 137 which is why I was put on the injections ("as it is one of those things"); it was only subsequently that I ended up hospitalised for stomach pains, blood etc, where the ulcerative colitis was diagnosed (following a colonoscopy). Further tests are going to be conducted to check the top of the digestive tract so as to determine UC/Crohns diagnosis (crohns runs in my family).

    For several years now I thought I was just 'tired', but it wasn't until the B12 results that everything clicked. I kept falling asleep on the sofa, and struggling to do basic physical things. I was really clumsy, irritable and just couldn't concentrate on anything. I also ended up seeing a doctor about tingling in my fingers, which they put down to a potential trapped nerve in my shoulder.

    All I really want right now is to understand what I should be doing about the B12 in light of the above. I get that I have a malabsorption issue, which is one thing, but I want to understand how I can maintain my levels between injections. I do a lot of physical exercise (5 hours a week+) and I'm a broad-shouldered guy; I don't want to have my levels slump after 8 weeks post-injection, leaving me straggling until the next dose.

    The good news is that at least I have got a retest of my levels. If they come back low then that indicates the need for more frequent testing.

    The alternative though, is: can I just go and buy B12 off-the-shelf and self-inject? Are there any risks to doing so?

  • in UK injectable B12 is prescription only so you can't just get it over the counter. In Australia you can get it over the counter - it depends on where you are.

    If in UK you can source injectible B12 from on-line pharmacies in the EU for personal use (eg from Germany).

    Other things you could try are high dose oral/sublingual sprays and tablets - as flooding the gut with very large amounts of B12 can result in enough gettting through. There are also nasal sprays (my main form of supplementation) and skin patches available as vitamin supplements. However, they don't work for everyone.

    You may also want to think about some folate supplementation (eg folic acid) as you may be getting through quite a bit of N9 processing and using the B12 you have

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