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Hi..is this normal please? 9wk test aft load dose, MCH bit higher than before inj’s (32.8) & ferritin 35 now, from 49 please?

Jo5454 profile image
13 Replies

Hi,

Quick recap, (if there’s such a thing😀)was on monthly inj due to functional deficiency (high mma), swopped to tablets, been increasingly unwell, serum 608, but weak, nauseous, confused, pins needles, faint, to name a few :) but allowed another loading dose, & 3 monthly, which on discussion! have been swopped to every 2 months…

MCH was 32.7 prior inj. Lymphocytes underange 0.7 (1-3)

32.5 after 2 injections (the 10;day test) Lymphocyte 1.1

MCH 5 days after first 2mnthly jab 32.8 Lymphocytes underange again 0.86

They forgot to do full blood count/ferritin on the 8 wk test( which is why I thought I was there?Theyd tried Activeb12, but lab refused, otherwise I’d have done one prior to that inj)) was just told my b12 highest they’ve seen in surgery for 4yrs- turned out it was 1800, I’ve had it nearer 5000 at times in past, but appreciate they wanted to check folate!

So bk yday for retest and wonder if anyone can tell me please if it’s normal for MCH to have lowered a little, then raised again please?

I appreciate i won’t feel full effect of b12 until ferritin is raised, I try to kp it 80-100, but recent fingerpricks haemolysed & it’s obv been dropping last 6 months (iron profile always states need for more iron at 50ish level) & am due a vit d, full thyroid check, fingerprick, not on meds for latter, but it dances about a bit!

Any help much appreciated once again thank you.l.

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Hockey_player profile image
Hockey_player

With pins and needles you should be on every other day injections. Tablets don't work for many of us.

Jo5454 profile image
Jo5454 in reply to Hockey_player

Yes thanks, I seemed to scrape by with monthly injections before, so was hoping to get same again with new Dr. Seems every 2 mnthly the best I can get, so may have to consider other options...the pins & needles worsened and were constant during loading dose, but eased off after that. Have returned a bit with this injection, but its difficult to know whats what as due tonferritin being 35 now, thats obv causing symptoms too...thank you.

Orchard33 profile image
Orchard33

Ferritin is used intensively with B12 injections which can lead to a ferritin deficiency. That was my experience. I had to resort to a private ferritin infusion. Will know more about ferritin status after five months at the end of July. Will post then.

Jo5454 profile image
Jo5454 in reply to Orchard33

Thank you...can I ask how low yours went before having to have an infusion please or was it symptoms that made you resort to them. Hoping you've got much better results in July and feeling better for the transfusions...thanks cery much.

Orchard33 profile image
Orchard33 in reply to Jo5454

Both persuaded me to ask for an infusion. I learnt that for PA people we need a ferritin level of 80-100. Some say 50. My level hovered between 29 to 31 over about 4 years. A normal result to my GP. I asked for a private referral.

Jo5454 profile image
Jo5454 in reply to Orchard33

Thank you...yes I'm def better between 80-100. Guess becoming b12 deficient & ,then loading dose has made it drop fairly quickly. My Dr is on leave at mo,but can put my concerns forward. Dr's I've seen never have much understanding of ferritin. A nurse recognised it when down to 12 once, but otherwise if its been bottom of range been told that's fine. I've learnt differently over the years, but it's appaling that they're not doing better & I fear for others new to b12 issues prob aren't even warned to ensure ferritin levels need to be kept up especialky with loading dose!

Orchard33 profile image
Orchard33 in reply to Jo5454

I agree. No doctor seems to take a holistic approach to PA. They seem to think that once too infrequent B12 jabs are given that that is enough. My GP certainly didn't appreciate the ferritin dimension but my haematologist did, thankfully

FlipperTD profile image
FlipperTD

Scientist, not medic.

Stating numbers such as MCH in isolation, it's hard to comment. If you're not anaemic then your MCH will only move very slowly, even if you have a megaloblastic bone marrow. Assuming your Hb is in the reference range, then you replace just under 1% of your red cells each day, so your MCH will move very slowly.

Your lymphocyte count changes are even harder to interpret. It's unlikely that they've got anything at all to do with your B12 status.

Fingerprick samples are a necessary nuisance. In a hospital environment they tend to be used purely on tiny babies, or when it's not possible to get venous samples. Then, we have to make the best of it. Venous blood is best, every time.

Haemolysed samples can be caused by a wide range of circumstances, and it's easy enough to get haemolysed venous samples, never mind fingerpricks. Performing any analyses on haemolysed samples tends to be suspect.

Poor techniques in collection, mixing, storage and transport can all affect the performance and survival of the sample.

Sorry to sound so negative!

Jo5454 profile image
Jo5454 in reply to FlipperTD

Thanks FlipperTD, yes, all other full blood coun bwas in range on the NHS test, so if its 80 days since my first loading dose injection, does that mean that 80% ish of my red blood cells have been replaced now please? But the MCH won't alter until 100%& have been replaced?Ah right,so lymphocyte activity not related to b12 deficiency. Its just that in the past lymphocytes were lower when mch overange. But yes thinking about it, actually after 2 injections from loading dose this time,they'd gone bk into range, but mch was 32.5 then,down from 32.7.

I was concerned why lymphocytes since gone below range again & mch bk up to 32.8,but guess the mch was just minor changes & the lymphocyte is coincidental.

Yes,appreciate what yre saying about pinprick,have just tended to do thyroid,vit d etc checks that way as it's been an affordable option. Many thanks for your time...

FlipperTD profile image
FlipperTD in reply to Jo5454

Hi. By 80 days into treatment then maybe 80% of your red cells will have been replaced. If your MCH was stable and high at the start, then it would be maybe 80% of the way it's going by 80 days. Approx. As it's being done on the whole mix of red cells in the sample then it reflects what's going on in your body.

Lymphocyte numbers are something entirely different. They're part of your immune system, and as such will react to changes in other stimuli. Viruses, other infections and so on. Lymphocytes will also need B12 and folate as they have DNA synthesis going on, but I can't say I've ever come across anyone monitoring lymphocytes in PA. If the rest of the FBC was in range on the NHS test, then I suspect you're not going to see much change anyway.

The MCH reference range will be a 95% confidence interval, so 95% of 'normals' will lie within the range. But given it's +/- 2SD range, 5% of normals will lie outside that range AND STILL BE NORMAL. [sorry to shout.]

Fingerprick samples are best avoided, although they seem helpful for self-sampling and sending stuff through the post. But's not ideal, by any means.

Jo5454 profile image
Jo5454

Thank you again Flipper TD, I try hard to understand the MCH and will read through what you’ve taught me before to refresh! In terms of that being back in range will mean testing further down the line then, it’s too early days to be wondering about that!

So you’re saying there’s room for a bit over range to be normal anyway, did I understand the shout correctly, I’m very easily confused at mo😃but due to mine usually being 31.5ish when I was on more regular injections, I guess that’s my normal usually and this is signifying a raise…thank you!

FlipperTD profile image
FlipperTD

Here we go... [This is going to be another long, drawn out one, I'm afraid. But it might be of interest to some of you, if you've nothing better to do.]

The example below concentrates on Iron. In megaloblastic change due to B12 or folate lack, then instead of getting smaller, cells released get bigger, but the rest remains the same. The MCHC doesn't change much as you don't have a problem making Hb, although you do have issues making red cells.

Where does the MCH come from? The FBC includes a red cell count, [RBC], MCV and Hb measurement. These are all done on the same analyser, simultaneously. Then with the wonders of technology, (Hb/RBC) gives us the MCH. (RBCxMCV) gives us the PCV or Hematocrit [same thing] and (Hb/PCV) gives us the MCHC.

In conditions where there is a lack of available iron, your body produces smaller red cells. (Microcytes). As you run out of iron, the cells released get smaller, and smaller. You also have difficulty in making Hb, as that's where the iron goes. So, the Hb goes down, the RBC doesn't move much, and then the Hb/RBC gives a smaller number. It takes a while, on the '1% of red cells replaced per day' approximation. The actual concentration of Hb in the RBC falls too, so the MCHC goes down too.

Another of the magic numbers in the FBC is the RDW. This is a measure of the width of the size distribution of the red cells. When change is occurring, you have new, smaller cells coming out, whilst older, bigger cells remain, so the RDW goes up. This reaches a maximum when you've got 'half and half' old and new, and then the RDW goes down again once the RBC size settles to the new value. Treatment reverses the above procedure, and the numbers go back to where they ought to be.

Most of the above magic numbers were also available before we had multi-parameter FBC analysers. Unfortunately, back in those days [mid 1960s and earlier] the red cell count wasn't as precise, so the MCH wasn't as good a measure. The PCV [packed cell volume] was done in a centrifuge, and read off directly. However, the red cell column at the bottom of the tube had plasma trapped between the red cells. to complicate matters further, in iron deficiency, there is a bigger percentage of trapped plasma, so the PCV is slightly overstated. Consequently the MCHC comes out a bit lower in iron deficiency. In Hereditary Spherocytosis [HS], the red cells pack better in the centrifuge, so the MCHC comes out a bit higher in HS.

Back in the mists of time, red cell counts could be performed down a microscope. The lack of precision was shocking compared to the modern equipment, as so few cells were counted [typically 500]whereas the modern kit counts massively more cells, [typically 50,000], and the dilution methods are far more precise than we could ever hope for using pipettes. Likewise, issues regarding mixing of samples played a big part in the errors.

Here endeth the lesson. Thank you for your patience.

Jo5454 profile image
Jo5454 in reply to FlipperTD

Thank you very much Flipper TD, it’s taken me a couple of days to attempt to understand fully, not sure I’m quite there yet but enjoying trying! Appreciate all that explaining and typing! All very interesting seeing how the precision has changed!

Can I ask about ferritin? Why do some us experience quite severe symptoms when ferritin is in range, but lower end please? And when you talk of iron deficiency do you mean the actual iron level being deficient or ironbstores please?

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