Raised levels

[Salphy]

Hi my active b12 is almost double top end of range 295 (25.1-165) should I be worried?

I've not been diagnosed PA as not had the tests but have been having 3 monthly injections since Jan 17 as my b12 was borderline. I eat a normal diet.

I don't particularly have any neuro symptoms other than a tremor which I've always had. Occasional p&n's but I think more due to posture. My air hunger is much less often. I'm still very fatigued but also have hashi's/hypo and pcos.

The test was taken about 4 weeks after my last injection. X

[Foggyme Administrator]

Hi Salphy. No, there's no reason to worry.

Following B12 injections, both serum B12 levels and active B12 levels can be astronomically high (because a hugh dose of B12 has as been injected). Levels slowly fall following injection and then are raised again when you have another injection - levels of those on B12 treatment are often significantly above the reference range - and some GP's mistakenly use this as a reason to either stop or withhold treatment. This is wrong (all the guidelines state that once injections have commenced, there is no need to keep re-testing B12 leaves - unless checking for low levels. B12 levels cannot be used to assess the efficacy of treatment...symptoms are the thing that count - not B12 levels - so GP's should treat symptoms, not B12 levels.

If your symptoms are returning before the next injections is due and are the relieved once you have an injection, this is an indicator that more frequent injections are needed.

The aim is to have injections at a frequency that stops symptoms returning. That is, to time frequency so that the next injections is given before symptoms return.

So, no need to worry about the high active B12 levels 😉😀.

👍

P.s. my serum B12 levels are always over 2000 (off the scale and unmeasurable). We have seen them here as high as 5999 😉

[Salphy in reply to Foggyme]

Thank you

They are usually raised (I get the tested regularly as part of a private thyroid package as it's cheaper) they've just never been this raised before and it was a month after the injection so just worried me a bit.

My biggest fear it that they stop my injections. Thankfully it's not been mentioned so far.

I haven't managed to get my thyroid under control yet so I have no idea what's causing which symptoms hopefully I'll get there soon. Thanks again x

[Foggyme Administrator in reply to Salphy]

Hi Salphy. Yes, it’s difficult to work out what’s due to what when thyroid's involved too 😳.

As above, it would be wrong to stop injections due to high B12 following injections.

If that happens post again and we can provide more information to help with your GP.

Hope you find some answers and feel better soon.

👍

[Salphy in reply to Foggyme]

Thank you xx

[Leothelion]

Hi Salphy, I myself was like you, I had fatigue and not diagnosed PA, but Hashi thyroid for 22 years, I still have B12 injections every 10 days approved by my Neurologist, so mine is high, but also when I started the B12 I also went gluten free as this is what they say with Hashi, anyway the fatigue did lift, but still kept coming back, so I looked into diet and was still having hidden gluten, I now have app to scan all products, since doing this for the last 6 weeks, I have felt so much better, also I have healed the gut with supplements and kefir, probiotics, prebiotics. My last endoscopy revealed gastritis, but I think it’s celiac, as I had high antibodies 30 years ago and only way to diagnose back then was a endoscopy and I refused, I was very young and scared.

Most problems start in the gut, I also now feel I don’t need so much B12 as I have energy every day, my thyroid medication has also reduced too, good luck into finding what works for you,

[Salphy]

Thanks Leo. Yes I've been gluten free since Sept 17 and found it helped with symptoms like bloating etc but I still feel fatigued.

They wanted to test for coeliac a few weeks ago sent me a letter in the post hours after my face to face appoint with the dr. Had to ring and tell them if the Dr had discussed this with me in my appointment they'd know i was already gf do the test would be pointless.

I'll have a look into the kefir, pre and probiotics thank you