B12 help

[Denny39]

Following on from previous post

I have an under active thyroid (Hashimoto’s) and my bloods from October 2021 was MCH 32.8 (27-32) and B12 was 379 (197-771). I read online the MCH this high was macrocytic anaemia but my endo didn’t tell me that.

I have been supplementing B complex and sometimes B12 liquid nature provides since.

In April 2023 B12 was 810 (191-663).

In October 2022 MCH went to 31.1 and May 2022 MCH was 31.5.

I have peripheral neuropathy symptoms in legs and can’t walk far 🥲

I don’t know if it’s thyroid related or if I need injections to help. When I first took B complex it took my breath away and I felt a bit jittery.

Can anyone let me know if I need injections and how they could make me feel? My body is super sensitive.

Thank you 😊

[GoneWithTheWind1972]

Not a professional but, Hashimoto and Pernicious Anaemia are commonly linked. Both are autoimmune diseases and can occur in groups. If you have the antibodies for Intrinsic Factor and/or Parietal Cells then you may require B12 injections for life. Also, many people self inject according to their symptoms rather than the numbers in their pathology results. Maybe request testing for these antibodies from your doctor first. If you test positive for this then this forum has many articles regarding beginning your B12 treatment journey. Many people with PA have neuropathy and treat themselves until their symptoms are reversed or improved.

[Dandelions]

Hi Denny39,

I see that no-one has replied yet. So I'll start this off and hopefully more knowledgeable people will reply soon, too.

I'm surprised your endo hasn't let you know about your elevated MCH: I thought they were really interested in that number. Have you asked them since you knew what it meant?

Your B12 is within range, but that doesn't necessarily mean your body is able to absorb the B12. This year your B12 has gone really high, so I wonder if that's further evidence that actually your body is just holding on to B12 without being able to use it. Have you done antibody tests for PA?

The jittery feeling when you started taking B12 also suggest a deficiency to me. I felt bad for the first few weeks and my deficiency was probably more mild than yours might be; and I've read similar stories from other on the forum here.

Because you have peripheral neuropathy I certainly would be very persistent in trying to find out if that's B12 deficiency related. It seems an urgent matter to me to at very least exclude it. Be very persistent with your doctor or ask help from PA society.

I found this symptom checklist and decision tree very helpful:

b12d.org/submit/document?id=46

[Denny39 in reply to Dandelions]

thanks for you reply. Can you let me know what blood tests to ask for to test PA ? Thanks

[Denny39 in reply to Dandelions]

Also can I ask, even though I am supplementing now will that mean the tests I get for b12 could be inaccurate? Or does the intrinsic and MMA blood tests still show accurate when you are supplementing. Thanks

[Dandelions in reply to Denny39]

My honest answer is that I don't know. I hope someone else will reply. Or perhaps repost this question.

There's a problem with all the tests in assessing whether there's a deficiency or PA. It should be treated on symptoms really, but doctors don't seem to like that.

I've had intrinsic factor and antibody test done. Both were negative. My B12 was within range of lab.No aenemia. My MMA however was out of range, but doctor didn't know what to do with that. So for the my gp and endo my B12 was fine. But I have felt a million times better since I've started taking B12 supplements.

You could ask for injections on experimental basis: if it makes you feel better, there's an underlying B12 issue.

This was posted today, too: bmj.com/content/bmj/383/bmj... I haven't finished reading it yet. But it looks very useful.

[Denny39 in reply to Dandelions]

Have you tried the injections yourself? I supplement b12 too my mouth and it helps.

[Dandelions in reply to Denny39]

No I haven’t. I take it drops of liquid and pills at the moment.

I’m not sure if I should go for injections .