B12 deficiency and night sweats query

[rmros]

Hi - I don't have a diagnosis but I hope you don't mind if I pick your expert brains 🙏

I (Female, 45) have fairly regular blood tests due to medication I take for inflammatory arthritis. My MCV has been a little bit high for years (up to 102). Early on doctors would question it and because of a family history of pernicious anaemia I've had a couple of B12 tests. The last was in 2021 and was 263 (ref range 180-999) so no action. Now they just ignore the MCV as it's always abnormal.

For the last year and a half I've been getting increasingly bad drenching night sweats. The clinical pharmacist at my last medication review suggested it was probably perimenopause. I wasn't convinced as I don't really have any other signs or symptoms.

My eyesight has been getting a bit weird for the last 6 months. It's hard to pinpoint what but something feels not quite right. The prescription is less than one year old. I do feel fatigued but that also comes with the inflammatory arthritis.

Trying to get to the bottom of my night sweats I read that B12 deficiency can be a cause. Of course I'm not asking you to diagnose me, but do you think a) it's possible with only the above symptoms, or would I likely have more symptoms? or b) could a B12 level within range but on the lower end be enough to cause symptoms like this?

I just want to be armed with some idea of what I want tested really.

Thank you.

[GW1000]

Hi - from my experience yes it is possible! In your position I would have a look at the new NICE guidance on the diagnosis of B12 deficiency - nice.org.uk/guidance/ng239/...

You will see that you fall into the “indeterminate” category where second line testing can be considered. It was only Homocysteine testing that revealed my deficiency which, after many many injections, is now improving. I also have autoimmune hypothyroidism. Is your arthritis autoimmune? That would add to the case for further testing I think.

I think it would be worth speaking to your GP with this information and/or looking at private blood tests that include Active B12. My word of caution there though is that my below range active B12 test was ignored by many doctors because it’s not “done” where I live.

[rmros in reply to GW1000]

Thank you so much - I will investigate. Yes my arthritis is autoimmune, psoriatic - they usually come with extras. My sister has Hashimoto's thyroiditis so wary of that too.

[MrsTuft]

have you checked your FSH to see what your ovaries are doing?

[rmros in reply to MrsTuft]

No, I'm pretty sure GP wouldn't test me as I'm 45+ and I don't want to pay until I've exhausted all other avenues.

[MrsTuft in reply to rmros]

I’d start there. You’re the right age.

[Doris11]

I get horrendous night sweats! Drenched 😟 I’m not menopausal! I looked up some symptoms and it directed me to hypothyroidism I got tested and bingo 😮 but I was also B12 deficient 221! If you can get a blood test to check (there’s new NICE guidelines on B12 deficiency) I was classed as more than likely deficient. Good luck 🤞

[rmros in reply to Doris11]

That's interesting - I feel like I have symptoms of underactive thyroid but I thought sweats were more likely in overactive. Did you get B12 injections or did you have to buy supplements?

[Doris11 in reply to rmros]

Hi @rmros after getting levothyroxine I still felt rough so bought recommended by these lovely people B12 complex but I wasn’t absorbing them even after nearly a year! I asked for B12 injections from my GP as I’m not absorbing tablets but she refused! So I buy my own from Germany and again recommended from these lovely people. I self inject once a month and after Mondays private blood test I’m going to review it 😀 but I still sweat! So I use a 100% cotton sheet and that is all. So I think it’s more thyroid related.

[Myoldcat]

I can relate to the 'weird' eyesight thing - I've worn varifocal glasses for decades, but before my diagnosis eyes felt blurry, vision just wasn't as sharp. I started twice weekly injections in December 23, had an eye test in January 24 and was given a stronger prescription. Also was referred to a specialist to investigate thinning around the optic nerve, which thankfully is stable and not B12 related. But on my final visit a month ago, I could read the lowest line on the eye chart perfectly, with my old prescription! Previously I was making mistakes on the line above. Both the specialist and I were quite startled!

So it's good to have a measurable benchmark of improvement since starting injections 🤩

[rmros in reply to Myoldcat]

This keeps happening to me too - I thought it was all downhill once I got varifocals but now I only need them for TV and driving!

I only started wearing varifocals 2 years ago and they were fine at first, now I'm constantly shifting them around to get the right angle or taking them on and off, which seems to defeat the purpose! I've noticed my eyes feel a bit dry and gritty, so that might be related to the arthritis.

[ClaireWF1346 in reply to Myoldcat]

I have also just been referred to the eye clinic following high pressure in my eye during my standard eye test. The specialist has noticed thinning of my optic nerves too so I'm back for another test in 4 months. I am hoping, like you, that it is just the norm for my eyes but it's interesting you also have the same. Perhaps a coincidence...perhaps not?

[Myoldcat in reply to ClaireWF1346]

My specialist said it can be associated with short sightedness and shouldn't change. But it's rather a coincidence, so who knows?

[ClaireWF1346 in reply to Myoldcat]

Ah, I am also slightly short sighted (I don't wear glasses as it's only minor) so maybe that's it! I had never heard of this nerve thinning until last weekend so it seemed odd to see you mention it too. As you say, probably and hopefully just a coincidence and stable for me too when I am next checked 😊

[Myoldcat in reply to ClaireWF1346]

Yes here's hoping 🤞

[PAPanda]

Hi! I have pernicious anaemia and psoriatic arthritis too, and started having night sweats at 45ish. I put it into the 'oh that's a bit wierd' category as I wasn't having hot flushes during the day, or any cycle changes. But for me it was definitely the start of perimenopause!

I didn't get more physical symptoms for a couple of years but looking back had more issues mood and memory wise that correlate to hormones shifts. I'm 51 now and my cycle is all over the place! But I wish I'd realised sooner that it can be a slowly unfolding process. Maisie Hills book 'perimenopause power' is a great resource that helped me understand more about this phase. And a friend said red clover supplements would help with hot flushes after a few weeks of taking them, and it did for me - nature's aid do a cheap red clover complex that's good.

All the best ❤️