Print

Please login or register.
1 Hour 1 Day 1 Week 1 Month Forever
Login with username, password and session length

[applejack]

Thanks Applejack but the doctor said my B12 levels were fine

I was recently diagnosed as having “fine” b12 levels but most European countries have a higher threshold than the uk. Mine was 220 which would be considered deficient in, say, Italy or Japan. I pushed and pushed and had to go private for extra tests where they found a gastric antibody which stops b12 absorption so now I’m on shots for life. My levels by then had dropped below the threshold but they wouldn’t have tested me again had the antibody not been confirmed elsewhere.

Symptoms were tingling in the feet, twitching in my cheek which was really disconcerting. My nails were a bizarre colour.  Much better now. I’m not saying this is what you have but some of the symptoms seem familiar.

[Oohbetty72]

Hi Orla thanks for your input, it doesn't sound like it's been a pleasant experience for you either so sorry to hear that. I have no swelling just burning/pins and needles constantly and it came on all of a sudden on 10th March with the virally feeling. Both go hand in hand. The first week it was just fatigue/aches and pains then second week onwards legs etc. If it was those burning symptoms alone I could probably cope a bit better but every day I wake up I feeling virusy and unwell, inflamed inside along with those leg symptoms and ringing in my head/ears. Also fatigued and lethargic. It's been 5 weeks yesterday and before that I was perfectly fine except for contracting covid in February. I had these symptoms last year but for about a week as explained in my original post and again dismissed. It's so bizarre.

My 90 year mother says she never had a single problem during menopause and sailed through it. Lucky her! 😒😏

I'm really not sure if it's a postal viral condition or menopause, maybe a combination of both! Going to ask for a second opinion because I have zero quality of life at the moment! Thanks again and all the best to you.

[Oohbetty72]

Applejack - that's an interesting point thank you. I will consider having my B12 levels retested privately if my symptoms don't improve. I have to do something I can't function daily although dragging myself through as best I can because if I think too deeply anxiety kicks in. Mainly due to not having answers and feeling ill every day I'm not an anxious person normally and it's not been an issue during menopause. It does sound similar yes and sorry you had a battle to get answers too. What a nightmare for us ladies! Thanks again.

[Hollyboll]

I was recently diagnosed as having “fine” b12 levels but most European countries have a higher threshold than the uk. Mine was 220 which would be considered deficient in, say, Italy or Japan. I pushed and pushed and had to go private for extra tests where they found a gastric antibody which stops b12 absorption so now I’m on shots for life. My levels by then had dropped below the threshold but they wouldn’t have tested me again had the antibody not been confirmed elsewhere.

That’s really interesting Applejack. What were you told (by the eventual people) about what level should be, ie is in other countries?
Mine is about same as your 220 (so Obvs also told fine!). I also notice that is very much lower than it was a couple of years ago … any idea of whether/ why it changes ?

Xx

[applejack]

I think in other countries it's something like 300-350. I do know that the NHS are revising the process for B12 diagnosis so hopefully they'll raise the threshold as well.  You can have "normal" range B12 but out of normal range Active B12 which they don't test you for. Low B12 can make you feel like absolute sh*te and even people within range can have awful symptoms. I think the new NHS guideline includes "treat the symptoms even if the level is within range" now.

It sometimes pairs up with low folates which they end up treating you for instead of low B12 and that's another can of worms.

No idea why mine changed but I started to feel tingly and awful a few months after getting covid in late 2022.  It could be a complete coincidence of course and I'd never paid attention to B12 levels before then but I'd never had persistent tingling and pins and needles until that point so I've self diagnosed!

It can also cause brain fog and cognitive impairment which is a symptom of menopause so it's difficult to know what's causing what.

[Oohbetty72]

That's a really interesting topic regarding B12 levels. I will look into that further. It seems to be a battle to get answers or a correct diagnosis and we're having to self diagnose a lot of the time. This forum is a godsend.

Re you getting tingly and feeling awful after covid in 2022 that's also really strange, it seems to be the same as I'm experiencing. I'm into my 6th week now and I've had enough. It's been 2 months since I first contracted covid with a 2 week gap of recovery. I've still got the same symptoms as I mentioned in my first post which vary in intensity but now chronic fatigue is setting in.

I do have an update though. I booked to see a private GP Monday as I felt so iĺl over the weekend and it's all getting me down now especially not having a clue what's wrong so wanted a second opinion. I paid the £69 fee and described my issues but he emailed me back saying it sounds chronic, I need a specialist so to go back to my GP and refunded me immediately! It made me feel I'd lost all hope if he couldn't even help me. I didn't want a miracle cure just suggestions as to what it could be instead of being told the usual "it's probably a virus".

Then luckily I had a yearly telephone appointment with my Dermatologist as I have a skin condition and we have a brief chat to see how things are. She used to be a GP so I basically broke down on the phone explaining what was happening and she immediately said it sounds like I have a mix of Post Viral Syndrome (I think that's also classed as M.E.) related to having covid in February and also hormones. (I explained I have the occasional hot flush and night sweats but not enough to bother me). She was sympathetic and said I should also be getting more support regarding menopause in case some symptoms are related. She's kindly writing to my GP to make them listen. It was the first time I saw light at the end of the tunnel. I do have a telephone appointment next Friday after I asked for a second opinion with reception but I just wanted help sooner as that was booked 3 weeks ago.

I'll come back with more updates when I get more answers.

How are we all still sane?! 😬

[Dotty]

Hi Oohbetty.....when I first started being ill  I didn't have any hot flushes or night sweats or any of the traditional menopause symptoms.  They didn't start till much later in my journey.  My first symptoms were total exhaustion: horrific nausea; a feeling that my body was poisoned; insomnia; I couldn't eat; I felt dizzy and disoriented all the time.  xx

[Oohbetty72]

Hi Dotty sorry for the delay.

That sounds an horrific experience and although I don't get nausea or dizziness it's the poisoning symptom I can relate to. It's relentless and every day I feel ill, but more virally than anything. The poisoning feeling is not quite as strong just feels my body is under attack. I'm still buzzing and burning in my body head to toe with tinnitus and chronic fatigue. I'm still waiting for my appointment next week but may try and bring it forward.

Thanks for your input it helps to know I'm not alone. I just hope if they put me on HRT it helps and it's not just post viral symptoms which drag on for months or longer. I mustn't think the worst! I'm eating and sleeping better than I ever have and it's not helping at all but I just need to hang in there and keep strong. It's mentally challenging that's for sure! Annoyingly I thought I was getting slightly better until a week ago and went backwards.

Thanks again much appreciated 🫶 xx

[Dotty]

Oohbetty …. My symptoms were put down to post viral.

There are lots of ladies who suffer with tinnitus due to low oestrogen. x

[Oohbetty72]

Hi Dotty

That's interesting but I guess probably because I'd been recovering from covid 2 weeks prior to feeling like this. I was just grateful she gave me some kind of answers when others have just said it's another virus. Hopefully I'll get myself sorted soon otherwise I'll go loopy 🤪 x