Body Aches with Pernicious Anaemia when B12 is running very low

[TravelLulu]

I often experience body aches and chills similar to cold / flu type symptoms when my B12 levels are low and my injection is due. I always get paranoid that I am becoming ill or catching a cold only to then realise I am due my B12 jab. I have been having B12 injections every 3 months for almost 5 years now and this happens almost every time. I am curious to know whether or not this happens to others? And how others feel physically when they’re due their B12 jabs?

[Nackapan]

Yes I've had those symptoms. Also leaden legs. Headaches . Vision down. Balance issues. Perhaps you could ask for a higher frequency . My daughter has recently been changed to 10 weekly . Asked for 8 weekly but got 10.

2-3 monthly b12 injections shoukdnr be difficult to get.

Sounds like it's clearly lower levels if you have a pattern.

[TravelLulu in reply to Nackapan]

Thanks so much for your response. That’s interesting as I also experience all the symptoms you mentioned. The vision / off balance feeling is especially very strong. I asked them to change my intake a few months back due to feeling so unwell mentally and physically every 2 months but they said it wasn’t possible and that doses every 3 months was all they could do. Looks like I have some chasing to do. Have heard others say to be persistent.

[Nackapan in reply to TravelLulu]

Yes bnf guidelines they have at a tap of the keyboard . 2-3 monthly

[deniseinmilden]

Yes, often. Or even if I've just "overdone it" on any one day.

Horrible, isn't it.

See if you can get your jabs brought forward (easier finding hen's teeth) or take additional sublingual tablets or sprays between injections to try to stop your levels dropping so much. (Don't tell the nurse).

[TravelLulu in reply to deniseinmilden]

Thanks so much. Yes, feeling as though I’ve ‘overdone it’ just after a 20 minute walk to the local shop is common for me. I’m looking in to oral sprays as we speak; do you know if they’re effective in terms of a short term remedy whilst waiting for my jab? Unsure as to whether or not I’ll be able to absorb them?

[deniseinmilden in reply to TravelLulu]

I have used the BetterYou B12 Boost spray to good effect.

It works quickly - I get a noticeable result within a few minutes - but didn't last very long with me as my requirements are so extreme (I've been injecting daily for nearly 6 years).

The recommded dose is 4 squirts a day and its lots more effective if you spread them out throughout the day and try to absorb as much as possible through your mouth - ie don't swallow it for as long as possible.

Otherwise Solgar methylcobalamin sublinguals were really good with others being effective and cheaper but not so small under your tongue. The longer they last in your mouth the longer you have to gradually absorb the B12 through the membranes in your mouth, particularly under your tongue.

I think it's worth a try!

[TravelLulu in reply to deniseinmilden]

This is really, really helpful. Thank you so much! I have ordered that exact B12 spray so I’ll give it a go and see how it works. I’ll try the sublinguals if the spray doesn’t work so well for me. Again, thanks for your help

[deniseinmilden in reply to TravelLulu]

You are very welcome and I appreciate your replies.I hope it works for you! 🤞 X

[EyeandDry]

I self inject once per month and recently left my dose until about the 7 week mark, instead of 4, due to tardiness more than anything. I was dizzy, off balance, had noticeable brain fog and felt like I was getting flu. I also reverted back to needing 12-14 hours sleep per night with low energy levels. When injecting every 4 weeks, I am down to 8-10 hours sleep per night. I won’t leave it so long again and grateful I can self inject and manage it myself. I am in Australia and ampoules/syringes are easily obtained otc from a pharmacy, no questions asked.

[TravelLulu in reply to EyeandDry]

That’s really good that you can self inject the b12. I actually lived in Australia for a year and generally found that Pernicious Anaemia was better handled by my doctor there than it ever has been in the UK, and they also offered jabs more frequently. I also notice the feeling of being off balance, and today in particular I have terrible brain fog and I’m struggling to hold conversations!

[Cherylclaire Forum Support in reply to TravelLulu]

I remember searching brain for the word "mango": other words appeared but I knew they were not what I was looking for. More often, I could not understand others, especially if they spoke fast or if I was talking with more than one person - like my brain was too slow to keep up. Couldn't have a conversation and have TV on. Music was more effort than pleasure- an interference. It may take a while, but you can improve on all of this.I never found spray to make a difference personally, but some do. I now self inject to ensure that I get the frequency that I need to function.

You are entitled to "maintenance" injections every 2-3 months- so who in your practice is getting the 2-monthly jabs? There are current guidelines that they are supposed to follow, but some practices just do what they've always done: one every 3 months.

If you have neurological symptoms, you are supposed to have injections every other day initially until there is no further improvement : why would anyone want to maintain an unsatisfactory level ? Even though it has been 5 years now, I'd still go for that.

Have you ever had a pernicious anaemia diagnosis ?

Have you ever seen a neurologist ?

Look up BNF guidelines (British national Formulary), NICE guidelines, BCSH guidelines (British Committee for Standards in Haematology) -happy reading.

For now, just cut to the summary/treatment advice and highlight that for GP !

[TravelLulu in reply to Cherylclaire]

Thank you for your advice. Yes, I often find myself struggling to hunt for the correct words in my brain! It’s difficult at times to hold a conversation and actually absorb what the other person is saying. I used to really struggle when I worked in customer service (before my diagnosis). I will definitely revisit this with my GP and in particular focus on the neurological symptoms. Will see what they can do.

[Cherylclaire Forum Support in reply to TravelLulu]

Decide what you want to ask for, have a list of your symptoms ready, and the relevant guidelines. GPs are there to help you keep healthy, but often do not know much about vitamin B12 deficiency and so can underestimate it's impact on your daily life.

Wishing you the best of luck.

[deniseinmilden in reply to Cherylclaire]

I always love reading your replies. I was doubting myself when I was thinking how long I'd been SI for but if you are 5 years I must be coming up for 6!How time flies when you have enough B12 😜😁

Wishing you as well as possible!

[Cherylclaire Forum Support in reply to deniseinmilden]

Glad you like reading my replies, deniseinmilden - I have benefitted from your advice quite a few times.

I meant it's been 5 years since TravelLulu was put on B12. I started self injecting in September 2017, so about three and a half years ago - although it feels like many more.

This was in complete desperation; I'd been signed off by the haematologist in August and she'd advised my GP to halve my injections to 1 every 2 months to put me in line with guidelines. The reason I'd been sent to her ? I'd been struggling on 1 a month !

Plus due to start a phased return at the start of September after being off sick for 4 terms. I managed to get back in January, so it became 5 terms; just one day a week, but at least I was working. Have since taken voluntary redundancy during lockdown.

It's okay though, it was time.

Wishing you the same back !

[deniseinmilden in reply to Cherylclaire]

Ha ha - the irony of getting muddled on a post about being muddled! 😁You're a star and I'm so glad things are less pressured for you (at least in a work way). All the best!

[Cherylclaire Forum Support in reply to deniseinmilden]

Hope you have had a chance to respond to the PAS survey on research - your input will be really valuable, I'm sure.

[deniseinmilden in reply to Cherylclaire]

No, sorry I missed it! I'll check it out, thank you! x