Letter from the hospital & Low ESR

[Steap]

Well my letter came from the hospital and its advising a trial of b12 injections over 6 months at one every three months with no mention of loading doses.

I think I can see why given their test results which were:

Full blood count normal apart from:

MCH 32.6pg

Abs. Lymphocyte Count 1.4 10*9/L

ESR 2mm/hour

Vitamin B12 915 ng/L

Folate >24.0 ng/mL

Ferritin 143.0 ug/L

U&E's normal

LFT's normal

Bone chemistry normal apart from:

Phosphate 0.69 mmol/L

eGFR 70 mL/min

Cortisol 381 nmol/L

(There are no reference ranges on the letter)

I'd taken sublingual b12 that morning so I'm amazed they even sanctioned the injections with that serum level.

He described loading doses in the consultation but doesn't mention them in his letter to the gp. (That's before the blood tests came back though)

He wants me to stop all oral b12 while trying the three monthly injections.............

Does anyone understand if those results are significant or have any experience of a low ESR please?

[Steap]

I read back over my own notes from the consultation. He said my b12 level was "always low" but he says I can absorb it as tablets prove that now and I "do not have pernicious anemia".

He also said he thinks b12 could be a "red herring"??

I tick so many boxes though.

I've done a bit of reading about low ESR and it only diagnoses a few things on paper non of which make sense although the MCH is red cell related so you'd think there might be a loose connection. There is some mention of it as a possible indicator of ME but again nothing conclusive.

All very confusing and annoying.

I'm wondering if the b12 injections will make any difference and I've been trying to get them for ages.

One other thing that I read re low ESR is the body produces extra fibrin to trap viruses etc in blood vessels so they can't travel around the body. That makes the blood sticky and lowers ESR. That's quite a novel idea but it kind of makes sense.

On that basis I wonder if it's maybe a reaction to leaky gut and the body's attempt to stop toxins getting to the wrong places.

I also wonder if I'm just crazy.

[Gambit62 Administrator]

this link explains a bit about the significance of the ESR test

labtestsonline.org/understa...

don't think it mentions any thing about low levels - high levels are a non-specific indicator of inflamation.

Difficult to say without the actual ranges but MCH is probably just above the normal range indicative of macrocytosis which may be why the B12 has been agreed.

Also, if he was looking at results over time - not just the current result as implied in your follow on that would change things significantly.

[Foggyme Administrator]

Hi Steap. Just had a look back at the first post you ever wrote (and the replies I left there).

Is your hospital consultant aware that blood tests showed you as being B12 deficient in 2012...and still deficienct in 2016 (prior to you taking the B12 supplements)? That's four years (that you know of) of confirmed deficiency...lots of potential damage and you've probably not been on the B12 supplements long enough to repair any damage (if I recall, you did have neurological symptoms?).

Your B12 levels may be better now but we all know that serum B12 levels are no indicator of the efficacy of treatment. Symptom relief is the only way to assess the effectiveness of treatment. If you still have symtpoms, you need mor B12 (know you are aware of the importance of good folate levels.

So...B12 a red herring - bah...humbug.

Low ESR (and tentative ME connection) is the red herring. Evidence has been...as far as I can see...almost anecdotal and even where some have suggested that low ESR may be associated with ME, this has not been proven by any meaningful / controlled clinical studies...as far as I can see (someone post please if you have anymore information on this).

Certain drugs (aspirin / NSAID's for instance) or infection can also lower ESR, as ca a 'spoiled' sample.

A low ESR is not usually considered significant unless it is lower than 1.

Fibrin is involved with the clotting process and is usually produced following damage to blood vessels (causes haemostatis and blood clotting to form a 'plug' over a wound site). I think the type of 'stickiness' you refer to is that found in the type of 'clumping' associate with polycythemia vera (rare disease) sickle cell anaemia etc. Don't think there is any association with low ESR / fibrinogen and leaky gut.

Based on what you have posted before, including your history, blood test results, symptoms etc...you do have B12 deficency (though of course it's not possible to rule out other potential conditions too). It always amazes me when doctors refuse to accept a serum B12 blood test which clearly demonstrates deficency (as yours have in the past).

Bit of a moot point about whether you have PA or not since it's the B12 deficency caused by PA that's the problem. And the treatment for B12 deficency is the same, whatever the cause: B12 injections.

So...good luck with the injections...let us know how you get one. 👍

[Steap]

Thank you gambit and foggme. I never feel quite so lost after your replies.

I did point out my 153pg in October however they have 314ng on their system (they Gp did his own test after I showed him my 153).

I asked the consultant for the neuro b12 regime but he said no because I "don't have pernicious anaemia".

When we spoke he said "5 or 6 loading doses then a six month trial with another at three months". However in his letter that I received a copy of today he just says a six month trial at three monthly intervals.

I'm using sublingual hydroxycobalamin 500mcg only daily and sometimes taking an extra dose if I feel bad late afternoon.

I'm usually getting up around 11am and taking my b12 then but today I got up at 08.30 and had it then.

I can feel it wearing off (or the fatigue kicking in) now at 7pm but it's too late to take it now as I know from experience I'll have trouble settling to sleep as it makes me feel jittery if I take it too late.

I am concerned that a single injection isn't going to cut the mustard symptom wise. I will however try. It's all I can do.

I told the consultant that I'd gotten ampoules to si but he was very opposed to the notion. I suspect that's why he agreed to prescribe it.

I'm still working on raising my vitamin D (it was 14.5 ng) and suspect that might go some way to explain the low phosphate.

I'm not sure why my folate is above range but there is 200mcg in my multivitamin and I've never eaten so much fruit & veg that I have lately (and liver but only once a fortnight).

[Steap]

Would 200mcg a day of folic acid in my centrum multivitamin be enough to knock the folate in my last test above range?

I'm reading that high folate can indicate b12 deficiency.

I'm also reading with interest that in SIBO the aerobic bacteria can gobble up ingested b12 but also produce lots of folate.

I've always wondered if I had gut dysbiosis as I get a lot of rumbles down there and bloating,

[Frodo in reply to Steap]

Interesting - just read draxe.com/sibo-symptoms/

The site is quite commercial, so possibly I shouldn't link to it, nevertheless there's some interesting stuff there, eg:

Quote: "In a report in the British Journal of Haematology, researchers indicate that megaloblastic anemia, a blood disorder that causes the loss of red blood cells, is directly related to bacterial overgrowth in the small intestine. This is due to the malabsorption of vitamin B12."