Advice on B12 levels and symptoms

[Murphysmum]

Hi, I’ve been kind of keeping an eye on this forum from over on the thyroid one!

I’ve been struggling now with thyroid symptoms for a couple of years but as my treatment improves, I wonder if some of my symptoms aren’t B12 related.

I wanted to ask; can you have normal-ish B12 levels show in bloods but your body not be using it properly? My last two bloods showed active B12 at 66 and 71pmol/L (37.50-188) despite supplementing every day with between 1000 and 3000mcg sublingual tablets for over 18 months now.

Secondly, my worst symptoms is muscle weakness. Can this be a B12 thing? I do also have tinnitus, some numb areas on feet and legs but the muscle weakness is the main thing. I know a lot of these symptoms cross over between thyroid and B12 deficiency and I’ve been focusing on the thyroid up until now.

I wonder too, if pursuing my body’s B12 ‘use’ is worth doing, how do I convince a doctor it’s worth looking at more closely? My levels have always been “in range” (they were in the 400’s when originally measured by the nhs, their range 180-2000ng/l) so they weren’t interested at that point.

I don’t necessarily think I have PA, maybe that my body just isn’t using B12 properly (.... kind of like my thyroid hormones! 🙄)

TIA 😊

[EllieMayNot]

Please don't let the label of PA throw you.....B12 deficiency is a bad thing no matter what the cause. My B12 numbers were always in the middle (right around 622pg/ml with normal being 200-1100). I have been suffering from increasing symptoms for well over a decade. I finally found a GP who knew enough to order a full PA panel which included: Serum B12, Folate, MMA, Hcy and antibodies to IF and Parietal Cells. While I did test positive to the Parietal Cell antibodies, the elevated MMA, primarily, and Hcy levels proved that I could not utilize oral/sublingual B12 properly (I had used both for many years) and needed injections even though my B12 and Folate tested in the "normal" range. Now I am trying to convince other family members to get their MMA tested, at the very least, as I see many with the same symptoms that I have.

[Murphysmum in reply to EllieMayNot]

Thank you!

This is what I wonder. Granted my thyroid symptoms are better but still fluctuate hugely and is only improved by increasing my dose although my bloods have looked good the last couple of times.

I just wonder if it wouldn’t do any harm to investigate, in order to rule out the B12 thing.

I’ve been supplementing for nearly two years with both B12 and good B complex and although my levels have risen, not by much. B12 particularly as more often recently I’ve been taking 3 sublingual a day rather than 1. Doesn’t seem to have made any difference.

Folate has improved but as for ferritin, I give up!

Thanks for sharing your story, it’s very useful 😉

[fbirder]

Yup. Like EllieMayNot says, get your MMA levels tested. If the doc can arrange hCys as well then that's even better. If you do have a functional deficiency (plenty of B12 in the blood, not enough getting to the right places in the cells) then the levels of one, or both, will be raised.

[Murphysmum in reply to fbirder]

Thank you.

Does a functional deficiency cause muscle weakness? It’s my main issue and no matter what I try, it’s there.

It’s very worrying 😢

[Judithdalston in reply to Murphysmum]

I have been struggling with muscle weakness, all over pain, tiredness etc for some years...have a diagnosis of hypothyroidism and fibromyalgia ( plus insulin- dependent diabetes). Tried the Dr. Lowe protocol to raise FT3, with more levo. and T3 only , and taking folate, ferritin, b12 and vit D supplements. But still got symptoms that mirror low b12 with tingling, numbness, vertigo etc so went to gp, unfortunately she would not do any MMA, hCys etc test, and just got general blood test with calcium. Low creatinine levels showed I was indeed deteriorating muscle wise, but no help offered. I had asked previously on this forum like you if you can have ok active b12 results but still have problems at cellular level; I have gone down b12 self injecting route ( having had dr. relative do first one to show husband how to do it as i’m a wimp. Took me 3 plus years to inject myself with easy insulin pen!). Got less tingling etc, tho just returning as 5 days since I had last injection, so might be worth a try for you too. My mum was diagnosed with PA and I have Hashimoto’s too.

[Murphysmum in reply to Judithdalston]

Hi!

We’ve “spoken” before on the thyroid forum.

It’s a nightmare isn’t it? I’m glad to hear (well not “glad” to hear, but relieved to hear you’ve had it for years as at the start I didn’t noticeable muscle weakness, just tired, heavy limbs. It appeared about a year in and won’t go! It worries me every time it worsens that it may be something else... something more.... terminal. So to know others suffer from it helps, if you know what I mean!

You’ll be aware then that I’m on T4/T3 combo now and although it’s helped, the weakness only disappears briefly. It’s like my body gets used to an increase and then the effect “wears off”.

I will ask the gp for more tests - pity yours wasn’t very supportive. Mine go seem to be quite good but they’re bound by what the lab will do, even if they request tests. We’ll see.

I’m just not convinced there might not be other factors at play in addition to my thyroid levels so I’m determined now to seek them out!

I’ve been using protein shakes and adding creatine in - I don’t know if it’s helping but I’m not keen on the idea of starting to lose muscle now.... I’m only 42. Long way to go. Might be an idea, although I’m sure you’ve probs it looked into it already?

Again thanks - all the info helps doesn’t it? 😊

[Judithdalston in reply to Murphysmum]

I’ve just reached 65 so probably expected to behave and have expectations of a pensioner ( of 30 years ago!). Over the years you learn coping mechanisms to stop getting exhausted eg struggling to get large lasagne dishes from head height in cupboard and ask others to do it, but do notice lack of finger strength too with opening things like sealed plastic bags or jar tops that were easy a year or so ago. I try to keep to 10,000 steps a day but doing that sometimes means that is all I do do one day. I had thought about protein drinks but think of them as designed to help mend muscle that is been torn after vigorous exercise ...i’m not quite that level! I’m now back on levo/T3 combo having spent last 15 months introducing T3, then T3 only up to 75 mcg, and now going back down to 37.5 mcg T3 and 33 mcg levo! You might end up with a fibromyalgia diagnosis to ‘shut you up’ after everything else ruled out.

[Murphysmum in reply to Judithdalston]

I wouldn’t rule out the protein thing. Seriously.

Many moons ago I worked for a nutrition company. A lot of our business was protein drinks that were supplied to the elderly market. Not that I’m suggesting you’re elderly, just that none of them were body builders!

I have a shake immediately after I’ve done my 3.5 mile dog walk, and if I’m feeling up to it, I do some strength stuff in the house (press ups, arm stuff, leg/bum stuff, but really low level stuff compared to any gym goer).

I couldn’t say that they help, ie, I’m not looking like a body builder 😂 but if they’re helping maintain my muscle that’s currently there, then that’s good right? I buy the protein and creatine online from a reputable place and it’s not expensive. In fact, the creatine is really cheap so I use some in drinks during the day too.

My general activity levels are quite good again now but I certainly couldn’t go back to my garden maintenance business I had up until two years ago, I can barely lift my hedgetrimmers now, let alone wield them above my head for hours at a time!

I live in hope though 🤞🏻

[Judithdalston in reply to Murphysmum]

Fortunately i’m upbeat, and live in hope too! My athletic sons have used creatinine etc etc so might be some about at home I could use to use after one of my 5,000 step ( x2) daily walks.