Causes of lower Active B12

[GW1000]

Hi - what are the reasons for Active B12 being low or rather lagging behind serum B12 for some people?

I am, very fortunately, currently getting 3x a week Hydroxocobalamin injections and am finally starting to do well!! My B12 was tested during a short gap in treatment - it was >2000 (I know testing isn’t recommended and I regret now not saying anything…). I have also just done a Medichecks thyroid test which included Active B12. I was fully expecting it to be off the range too, but it is “only” 150pmol/L (37.5 - 188). I’m happy with that as a level, I’m feeling really quite good! - but am interested in better understanding what it is that’s going on that means my active B12 lags so far behind. Do other people find the same or is it not really known since testing is advised against anyway?

[Narwhal10]

Hi GW1000,

Many of us use symptoms trackers or are just aware of our signs and symptoms. We have no idea of what is happening at a cellular level from a blood test.

It is pleasing that you are feeling really quite good. A number on a screen in whatever units does not quantify :-

Your Pain levels

Your Fatigue levels

Your Ability to carry out tasks such as climbing stairs, bending down to unload washing machine.

Your Ability to work/study or run a home

Your Ability to have relationships and/or socialise

The Impact upon Your mood.

This would use a Rating Scale such as Excellent, Very Good, Good, Fair, Poor, Very Poor and a Time frame such as Over the past 4 weeks.

Hope that helps more to understand how to Measure a person’s Quality of Life more appropriately.

Best wishes

[GW1000 in reply to Narwhal10]

I very much agree a number on a screen is meaningless without the context. I’m lucky to have never had significant pain, but have struggled in all the other areas you list. It is such a relief to start feeling capable of some of them again now and have hope that others (e.g. getting back to work) are now a more realistic prospect. I’m so grateful to those here and on the Thyroid UK forum who have helped me get my life back! (Having had setbacks I’m always nervous of speaking too soon…so have my fingers crossed as well!)

[Narwhal10 in reply to GW1000]

I am sorry to read. Fatigue is very poorly understood by the Medical Profession. The Chief Executive of the PA Society is doing some work in this area. Both Thyroid Disease and PA/B12D can be regarded as Energy Limiting Diseases. So, we prioritise, PACE and say the powerful word of NO to ‘stuff’. There is the Chronic Illness Inclusion Organisation, if you so wish :-

chronicillnessinclusion.org...

This is to educate not only yourself but loved ones. When they hear that you are Tired All the Time, they too complain of it. However, if a person says, I have autoimmune diseases, my body attacks itself. People hear that very differently.

The best Fatigue Rating scale I have seen to date is on the Crohn’s and Colitis U.K. website. The good news is that it seems you are on the mend. Plus have had setbacks. There are times when we have to push ourselves such as caring responsibilities or just a small celebration. Then we say to ourselves, I need to recover from that.

Wishing you all the best

[wedgewood in reply to Narwhal10]

You’ve put that so well. So helpful

.

.

[Narwhal10 in reply to wedgewood]

It is not my work so I cannot take credit. Believe it or not there are Questionnaires for Quality of Life or Assessments of How an Illness or Treatment can be Monitored. This is the SF-8 from the University of Cambridge

epi-meta.mrc-epid.cam.ac.uk...

SF - stands for Short Form. There are longer ones. Imagine GW1000 turned around to the phlebotomist and saying, I do not consent to my B12 levels being rechecked but here is a completed FORM to add to my Medical Records. 😉

[Jillymo]

I am pleased you have asked this question.

I inject twice a day and my active B12 was quite low too ! 🤔

I am sure somebody will enlighten us.

[GW1000 in reply to Jillymo]

I hope so. I think the (new) GP I’ve been seeing might be interested - she’s been pretty good so far but is nervous about high B12 levels so it might help convince her it’s fine. I’m also interested in case of a genetic cause as I think one of my children may also be affected.

[Jillymo in reply to GW1000]

Pleased to hear your Gp is interested and being helpful - hold tight to her she is a rare breed. If she is willing to work with you that is great.