Perhaps not utilising B12 - how to know? what to do?

[muddlemand]

Hi, I'm new to this forum. I don't *think* I have PA but it's one of several possibilities that I'm looking into. My profile has more info and you're welcome to stalk me on the Thyroid UK forum if you like. but I'll give a brief background after my question here.

Is it possible to have high B12 levels but still be B12 deficient because of not utilising it? If so, is this PA by definition or is there more to it? (I have read around but can't be sure I have understood or missed something, I've been reading about so many different conditions and syndromes in recent weeks. For now Vitamin D looks my most likely culprit, or perhaps adrenal fatigue.) I have pretty much all the symptoms. of PA. But they're also the symptoms of adrenal fatigue which also looks likely (my body temperature fluctuates), and of other things.

Blood tests so far this year have shown: severe Vitamin D deficiency (now supplementing); low ferritin (prescribed ferrous fumarate, can't tolerate it, about to ask my GP for an alternative); low sodium, high B12. They did the blood tests to rule out scary ways my B12 could be high (leukaemia and the rest) - and I have never taken B12 in a supplement.

A bit more background (sorry so long, but skip it if you like):

- I've had something for 20-30 years which I was told in 2009 as fibromyalgia, but I'm beginning to believe that was a misdiagnosis (no tender points and I do get swelling intermittently).

- I had a stroke at the age of 38, in 2006. They were very thorough investigating (I was suddenly a Very Interesting Patient!) and found no cause. Best guess was migraine-related, which I agree fits every detail of the description. I haven't earned money since. (I refuse to say I don't work - I DO work, everyday life is a lot of work!) In fact I couldn't drive for seven years. Nothing visible, mostly cognitive issues.

- I don't really get migraines. From the age of 20 (never before) I had one a year, classic migraine with zigzags and so on. More during pregnancy. After my last baby (born in 2000) I was getting "almost-migraine", waffly visual problems, vague one-sided headaches, never the full-blown headache but lots of weird stuff - for six years, until the stroke which manifested as the grandfather of all migraine headaches. Since then I get migraine attacks usually without any headache but all the other aspects (visual, mood, energy cycle, etc) - if migraine is what they are. Basically my brain's wired wrong.

- In 2011-12 I was seriously ill with an overactive thyroid, which was treated with carbimazole and "over and done with". I felt it was getting overactive again this winter, but TSH, FT3, FT4, TT4 (I think it was) are all in normal range. I have today sent a sample off for antibodies, and if they're normal I definitely haven't got a thyroid problem at the moment.

- This year I've started the learning curve on vitamins/minerals etc etc. Last summer I went more or less dairy free after years of wondering about it, as i suddenly started reacting badly, diarrhoea etc. (I do indulge quite often, using lactase tablets to make me process the lactose, but it doesn't do the trick fully.) Around Jan/Feb this year I became sensitive to coffee so I've cut that drastically back too. I don't even want to think about gluten free but it looks like I'll have to go that way sooner or later - just too much to take on, at the moment.

- Unless these food sensitivities are it, no sign at all of menopause yet. I'm 50. I think the sensitivities indicate something else, perhaps the nutritional stuff reaching a tipping point - nutritional things which I suspect have been all or most of my life. Almost certain the Vit D deficiency has been, if nothing else.

- And I nearly forgot! I've been type 1 diabetic since the age of six, on an insulin pump since 2010.

[Gambit62 Administrator]

Do you know if they tested homocysteine and MMA? if they were high in the absence of indicators of other causes then that would suggest that you do have a problem with the metabolism of B12 in your cells - these are quite rare conditions and you may well need to supplement and get your B12 levels even higher if this is the case.

Is your diabetes well controlled. Unfortunately there is also a huge overlap in symptoms of B12 deficiency and diabetes.

B12 does play a part in the krebbs cycle and ketoacidosis is a rare manifestation of B12 deficiency. Some diabetics also report that B12 seems to help with controlling sugar levels.

[muddlemand in reply to Gambit62]

So sorry @Gambit62, I completely missed that you had replied. In fact I forgot I'd asked this, and it still doesn't even ring a bell now that I read it back! I must be foggier this week than I realised!

I will dig out my blood results (three lots so far this year) and see. Pretty sure homocysteine isn't among them but I am going to get everything into a "health investigation" folder like a school project(!) and I've allocated this afternoon to get it all straight.

I've struggled with sugar levels for years, I'm pretty conscientious (with both testing and diet) but I do avoid hypos because I can't be sure of being ok to deal with them most days. Lots of things make it harder including pain levels and stress... also low Vit D which is now finally identified and being addressed.

I'll have to look up krebbs cycle and MMA. Onto it! Back later, when I've got all my bloods into a form I can refer to easily.

[muddlemand]

Sorted through my blood results. MMA hasn't been tested (unless it goes by another name). Homocysteine neither.

I see my GP in early July. Are GPs generally reluctant to test these, or to put it another way, have I got enough to convince the NHS that the test is needed? I'd rather wait till July than go private, but no point waiting if the NHS won't do the tests anyway.

Found some things on the Krebbs cycle, but I can't see how it relates to glucose levels?

January (Medichecks):

ACTIVE B12 *>256 pmol/L (25.10 - 165.00)

FOLATE (SERUM) 12.89 ug/L (2.91 - 50.00)

25 OH VITAMIN D *23 nmol/L (50-200); deficient

FERRITIN *6.07 ug/L (13.00 - 150.00)

March (NHS):

total Vit D (serum) 54 nmol/L - been supplementing since January.

serum vitamin B12 1082 ng/l (200.0-960.0); above range

serum ferritin 6 ng/ml (20.0-350.0); below range

serum folate 13.6 ng/ml (3-18)

May (Medichecks):

ACTIVE B12 *>300 pmol/L (25.10 - 165.00)

FOLATE (SERUM) 11.26 ug/L (2.91 - 50.00)

FERRITIN 22.9 ug/L (13.00 - 150.00

My ferritin improved having taken only 8 of the ferrous fumarate that I was prescribed, as I didn't tolerate it. I've been given sodium feredetate trihydrate instead, which the GP said is her only other option, but so far I've only had one day's dose spread over three days, easing myself into this one(!). Since January I'd been eating liver every week and greens as much as I could, that was the only difference (and I normally eat my greens anyway, though not much red meat). Seems a huge improvement for just that. I never used to have a problem with iron levels, even post childbirth and post miscarriage... could taking Vit D have made the difference?

Don't know if these are also relevant, ie affected by / affecting the others:

serum calcium 2.19 mmol/L (2.2-2.6); below range

serum sodium 130 mmol/L (133-146); below range

Everything else was in range (unless I'm missing something; struggling with all this detail on the page).

I also read something about the size of blood cells, relating to B12, but I'm not sure which of the following shows this - cell volume? platelet volume?

mean cell volume 77.1 fl (78-100); below range

mean cell haemoglobin 23.6 pg (27-32); below range

mean cell haemoglobin concentration 307 g/l (320-360); below range

red blood cell distribution width 18.6 % (11.5-15.5); above range

platelet count - observation 294 10*9/l (150-400)

mean platelet volume 10.6 fl (8-12)

Sorry to take so long getting back on this, been a busy week and I haven't been at my brainiest for dealing with data.

[Marz in reply to muddlemand]

Gambit62 would not have received an alert as you replied to yourself inadvertently 😊

[Gambit62 Administrator in reply to Marz]

Thanks Marz

MMA and homocysteine tend not to done by GPs - they are more expensive and more complicated tests and generally you need to be referred to a hospital to have them done.

Your blood work is showing macrocytic anaemia - your red blood cells (MCV, MCH) are smaller than they should be because you don't have enough iron.

Your RDW is also very high - this indicates the extent to which the size of your red blood cells vary (whereas MCV and MCH are averages of all the red blood cells). This could be ther result of a of microcytic and macrocytic (larger rounder red blood cells - a common symptom of B12 and folate deficiencies) going on at the same time but the iron deficiency is masking the macrocytic anaemia.

So, you could well be B12 deficient. The iron deficiency certainly points to absorption problems.

Uncontrolled diabetes will also make your gut less efficient at absorbing vitamins and minerals because of damage to related blood vessels.

Type 1 diabetes tends to be auto-immune and if you have one auto-immune disorder that increases the likelihood of other deficiencies, like PA.

Sorry it isn't possible to really give anything definitive - just suggestions for things that could be followed up on.

Unfortunately B12 isn't very well understood by GPs - hoping that your GP is open to expanding their knowledge of B12 - eg by reading the BCSH guidelines on daignosis and treatment of cobalamin and Folate deficiencies, or by looking at the area of the PAS website aimed specifically at medical professionals.

Your GP can access the guidelines through the BNF but they can also be accessed here

onlinelibrary.wiley.com/doi...

the PAS area for medical professionals can be found here

pernicious-anaemia-society....

you should also make a list of symptoms that could relate to B12 deficiency - though there is a huge overlap with diabetes and also with migraine

pernicious-anaemia-society....

if your diabetes has affected your kidneys this could explain the rising B12 levels as the kidneys play an important role in filtering out excess B12 but I'm not sure it would explain the excess on the active B12 as they wouldn't normally be filtering out B12 that was bound to Holo-T ... guess this could mean that levels bound to holo-T might also increase.

Liver is rich in B12 as well as iron so if you don't have an absorption problem it could also explain the rising levels of B12, with the possibility that you now have a functional B12 deficiency. The most effective way of treating this is to raise B12 levels even higher and keep them there so your cells actually get enough.

This is a link to an article of functional B12 deficiency

watermark.silverchair.com/h...

The article is from Q J Med 2013; 106:505–515

as the link doesn't always work.

[muddlemand in reply to Gambit62]

Thanks so much for those links, which I will follow up - I've decided to make this a "school project" with a lever arch file and sections for each nutrient! So that I have my own notes to refer back to, with a list of references as evidence to put in front of professionals, all in a place I can put my hand on them when I want. The topic has got too big and sprawling for me to keep in my head.

Suggestions to follow up is exactly what I need at this stage.

I knew about my iron being low but again, anaemia is another catch-all term with variations within it and then possibilities for cause. Very interested in what you say about the RDW.

And again, the iron may affect (or indicate) B12, the diabetes may affect absorption, other things may affect the blood sugars - low sodium can make them look worse than they are, but I don't know by how much ... I have a strong feeling that it all needs to be sorted out together rather than one thing at a time, as they are all so interdependent. Or if I'm lucky, sorting out one will trigger a domino effect where all the rest start coming right. or at least making themselves easy to see.

Pretty sure my kidneys are ok, I never have high proteinurea and that's tested regularly.

I think my GP has reached the end of her interest in my blood tests, having ruled out leukaemia etc as potential causes of the high B12. She says that now we know I haven't a blood or liver disease, no need to worry about that. She only wants to fix the anaemia and doesn't consider the low Vit D to be a problem either, but is OK with me topping up what she prescribes. (She hasn't asked how much I top it up. I'm taking 12x what she can prescribe! - having done my research, and also found I notice the difference when I only take 6x as much.)

I'm disappointed in this GP as she was recommended by a friend and is popular with patients, but I'm finding her not very willing to be painstaking. To be fair, I'm a complicated patient with Opinions(!) and I'm completely new to her with a great long string of questions and suggestions! This whole blood count thing is only a sixth of the list I arrived with when we first met.