Some questions?

Sorry for the constant questions i ask on here, but as you know its quite a lonely but rollarcoaster of am illness

I have two questions...

I had a high (MCV) again don't know the level, going to try and get a print out tomorrow. The doctor didn't give me a 'diagnoses' per say but would megaloblastic anemia be if my MCV level is high?

Also I haven't been prescribed loading doses and just to have injections every 3 months, (my first one tomorrow eek), my main symptoms are not neurological, my main symptoms are mainly 'gastro' though I do having aching, shooting pains in my legs(sometimes in my hands and feet) but tried to tell the doc this but you how they like to rush you out the door, its just mainly stomach issues, everything fine in bloods apart from obviously low folate and b12 lol! So am i still entitled to loading injections? I am feeling pretty unwell. Nausea, full when eaten a little (read that is precious symptom, so is it worth further testing? I'm on folic acid 5mg. To me it doesn't sound an injection every 3 months cuts it and i havent even started, it sounds so far apart.

I found out my great nan had 'precious anemia' and had injections every month.

I just want to make sure i get the right treatment as im feeling pretty unwell at the moment and have been really for the last 2/3 years.

5 Replies

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  • Hi Emmy1991.

    First - you should not be taking any folate supplements until 24 hours after you have commenced injections - this can a) mask your B12 deficiency and b) potentially cause neurological damage. Your GP obviously doesn't know this. So,perhaps best not to take any more folate until 24 hours after your first injection.

    And yes...you need the 6 x loading doses - whether you have neurological symptoms or not. The loading doses are designed raise low B12 levels as quickly as possible - sort of like filling a tank that has been empty for a while - and your levels are very low.

    And yes high MCV (mean cell volume) means that your red blood cells are larger than normal - macrocytic cells - often present in B12 and / or folate deficiency and pernicious anaemia (if you have it).

    Did your GP test your ant-IF antibodies (test for PA). If not, worth doing. If positive, you definately have PA. If negative, it's only 50% accurate and you could still have PA (some GP's don't know this).

    Has your GP tested you for heliobactor pylori? This can be one cause of the gastric symptoms you describe, it causes B12 deficiency, and people with PA or other autoimmune conditions are more prone to it.

    Also - with all those gastric symptoms - which appear to be long standing - you may well benefit from a referral to a gastrologist. Surprised your GP hasn't done so already.

    With respect to your great nan's monthly injections, if she was having cyanocobalamin injections, they were/are given monthly (but these ar not often used nowadays). Hydroxocobalamin used to be given monthly, then it was changed to two monthly, now it is routinely given three monthly. There's no medical evidence for these changes and many people find that three monthly injections are not enough for them (though some people do manage).

    So...you need to have the 6 loading injections then, if no neurological symptoms, an injection every three months. If you find your symptoms coming back before the three month jab is due, then it will mean that you are not getting enough B12 and likely need injections more often. It's often not very easy to get GP's to give more frequent injections so if this happens, pop back again and we can try and helps with this.

    A final thought....have you checked your symptoms against the symptoms checklist in the second pinned post. Might be worth a quick look to make sure that you don't have any neurological symptoms - some people have them without realising that they are neurological in origin.

    Good luck 👍

  • Thank you so much for your reply. Sorry again for repeating myself. I won't take anymore folate.

    I'm quite surprised aswell to be honest. I mean all these "Gastro" symptoms surely can't be b12. I'm gonna go back Wednesday for an appointment with my doc

    I'm not sure he did, again, I will try to get my blood results tomorrow to see exactly what he tested for. I know he did liver, kidney, thyroid you know the usual.

    I don't know about my great Nan injections much that's all I've been told as she's passed away years ago but my Nan just told me about it. Thought it could be worth mentioning to my doc.

    Thanks for the info.

  • Hi Emmy1991. Yes, certainly worth mentioning your great nan's PA to your doctor - autoimmune conditions can tend to run in families so it is a possibility that you could have it - certainly it should put up a red autoimmune flag for your GP.

    It's worth asking your GP if he tested for thyroid antibodies (bet he didn't) - he should. (Really, you should have a full thyroid panel, to include FT3 and FT4, plus the thyroid antibodies - TSH alone does not give a true picture of thyroid status).

    People with a family history of PA or autoimmune conditions are also more likely to suffer from Hashimoto's thyroiditis (an autoimmune condition) but this will not be picked up by testing TSH alone. There are many cross-over symptoms between this and B12 deficiency so it would be good to rule it out as a cause of your symptoms.

    GP should also run a general antibody screen and test inflammatory markers (C-Reactive protein - CPR, and esenophil sedimentation rate - ESR) to make sure that no inflammatory processes are in action and that your autoimmune status is okay. (These tests do not diagnose anything, they are just general screening tests that will indicate if further investigations are necessary - quite routine test so,perhaps that have been done?)

    Asking for the above tests is not unreasonable - you've been unwell for far to long and your GP should want to investigate all possibilities so that you can be helped to better health. So wave that red autoimmune flag at him.

    It's very common for people with B12 deficiency and/or PA to have multiple gastric symptoms (gastritis, duoedinitis, ulcers, gastric atrophy, low or high stomach acid etc.).

    The usual diagnostic / treatment route is for referral to a gastroenterologist, who should organise an endoscopy (tube into the stomach to have a look see - maybe take some biopsies) so that gastric issues can be diagnosed and hence treated appropriately.

    Someone presenting with your gastric issues should be referred under what's called the two week rule - endoscopy within two weeks with a follow-up consultant appointment. Really have no idea why your GP is waiting to do this.

    Check it out on NHS choices - then show him the evidence.

    Oh, and - GP's often say blood results are normal when they're not. Sometimes bumping along at the bottom or top of a range is not good enough, despite the fact that this is referred to as 'normal'.

    If you want to get copies of all your results and post them here, together with the reference ranges, people can help with interpretation. (You are entitled to these - your GP or the receptionist can print them out for you.)

    Anyway....good luck, let us know how it goes and shout if you need any more help 😀👍

  • So had my injection today. When I got there they said they had ran out of b12 but was seeing gp straight after so as soon as I finished with doctor the nurse ran up to me and said she'd found some, so had my injection didn't feel a thing to be honest

    Gp agreed and has put me on weekly doses, they still keep bringing up I'm only "borderline" as there ref range is (200-900) grrrrr.

    Also after my first injection I don't feel any different what so ever? Lol is this normal?

    I said about Gastro symptoms gp said to get my levels up first then do further investigation.

  • After my first injection have felt no difference st all :( is this normal?

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