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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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.
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.
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.
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.
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!
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
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.
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...
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.
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!
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.
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?
Iron deficiency really means a lack of iron stores in the bone marrow. To prove that, you'd need a bone marrow biopsy and someone to perform an iron stain on it, using Perls Prussian Blue reaction, to look for haemosiderin granules in the cells. However, nobody really would want a marrow if avoidable, so we talk about hypochromic anaemia [low Hb, MCH and MCV] and typically low ferritin, low serum iron and raised TIBC. But Iron Deficiency really refers to iron stores.
You talked of finding time between appointments to get in a holiday…fantastic that you have and hope you had a great break. All the more great though that you’re back, hopefully refreshed and ready to sort us out again 😀We’ve had hailstones last wkend, no kidding, size of the larger marbles. Went straight thro polythene covers overvlettuces, through leaves of anything growing,smashed cds nailed to posts to encourage pigeons away & even through some local conservatory roofs! Hope u had better weather!
Thank you, yes does sound rather drastic measures, though interesting to know how it works. So technically ferritin under 30 is considered iron deficiency, without any issues needing showing up on other iron tests. Once my ferritin gets to 50’s I feel it & iron panel shows a need for iron at that stage ,so guess the nhs guide is not set in stone?
I won’t know abt MCH,etc, ironwise until the b12 issue improves. Do you think the Dr will be prepared to test this after 100 days to check, seeing as itbwas done 80 days and still overange, or maybe that’s asking too much?
Thank you for diving straight bk in after yr hols!
Well, you get an MCH with an FBC whether you like it or not, and given the number of FBCs performed every day it's a wonder we don't all have one a week! If you get an RDW, that will tell you if it's reacting. Don't forget that ferritin is an acute phase reactant, like CRP and ESR, and even Fibrinogen [but slower] and consequently if you have an inflammatory process, the ferritin doesn't actually show your iron status as well as it might. That's why I'd say to keep an eye on the FBC values first and foremost, because once you start running out of iron, the MCH drops, the Hb drops, the RDW increases. But it's all good fun.
We survived the monsoons, as we were in the Lakes and we didn't get them, just for a change.
Hi Flipper, I wonder if I can pick your brains again please? I’ve been given access to my notes and in 1998 a b12 bone blood test was listed amongst some requested by a specialist at the hospital. I don’t have access to those results, presum I’d need to contact hosp for those, but wondering if this was the name of the test then, or whether they are 2 seperate tests listed next to each other please?
I have another result from back then for b12, so presume this is something a bit different?
You've got me on this one. This could be several different things, or it's several things concatenated [just had to get that word in!] There are things such as a 'Bone Profile', which measures various things, but the first thing that springs to mind is that if there's a mention of B12 and Bone, could someone have been thinking about performing a Bone Marrow biopsy? If so, you'd remember someone sticking a big needle into yuor bone and sucking marrow out! It's how we used to confirm Megaloblastosis, because this way, we can see megaloblasts down the microscope. It also allows us to differentiate between Megaloblastic change and Sideroblastic change, which is rather rarer, and very different.
It would be nice to think that the hospital would have access to those results from 1998, but they wouldn't be on line. There may be a paper record, or it may have been microfiched.
Lol thanks Flipper Td yes I prob do need good luck,because if u dont know,chances of me finding out are prob slim,but i do like a challenge!what an excellent word to tuck in! Everything else is in a list but b12 bone blood test together,but yes maybe a bone profile & b12 got squashed together!
Ive discovered another b12 result from around that time in the 200's which is same as what mine was when diagnosed with functional deficiency/high mma all these yrs on,alongside ferritin of 11, so looks like it's been part of the picture for many moons and maybe not all down to a diagnosis of ME...I'll keep rummaging,it's just the writing is a bit hard to decipher on some of it! Thank you...
Without knowing the actual ferritin assay used, and therefore the sensitivity and reference range for age & sex, I'd still say that 11 was a bit on the low side! Your B12 result looks OK.
Thanks, yes ferritin was well underange and b12 then was the same as it was more recently when I was diagnosed with very high mma- i dont fit into the NHS range! I was trying to discover if b12 deficiency was involved in my very poor health then & now I believe it was...
Well it's quite a relief to know I'm making sense thank you:)! Especially after packaging up a faulty toothbrush then next morn looking to find my phone charger & could only put my hands on the toothbrush charger,whoops, at least I hadn't posted it back! Took to PO when I knew it should be Evri at the Co-op,then sat down that eve & realised I hadn't included the travel case in it! Seems its all gone astray in post anyway, ho hum! Keep on with my jabs methinks!
Hi FlipperTD, wonder if I can pick your brains again please?I appreciate wevevalready discussed the problems with fingerpricks, but seeing as I check vit d that way once a yr, & its been compatible to nhs follow up, plus needed active b12, went for the sale & got them as part of thyroid offer.
It threw up ferritin as 86, but only 6 wks ago it was 37 on nhs test. I've only taken minimal iron,been awaiting heme iron to arrive/try & stopped taking for 1 wk prior to this test. In the past its taken months to raise, and had lowered to 37 aft loading dose, so I expected with more b12 it may lower further or at least take time to rise?
Have contacted tester,but can I ask yr opinion please?
Hi Jo. It's important to note that a ferritin test isn't just a ferritin test. It's done using an immunoassay, and different manufacturers use different anti-ferritin antibodies in their tests. They all detect ferritin but they don't all produce the same results. I won't mention any manufacturers names, but I had the misery of changing over from one maker to another [not my choice] and the differences in reference ranges [and results] managed to confuse the punters a great deal. When the renal physicians are using the test to monitor treatment then it's certain to confuse them too. So I wouldn't read too much into difference between suppliers, especially if there's also the differences in sample collection types too. Helvella's input below is very useful too. [Thanks Helvella!] It's far easier to compare results over time if the laboratory is a fixed point, otherwise there are too many variables. Don't compare results between providers, in general. You'd be OK comparing Hb and RBC counts, but I wouldn't go any further than that to be honest.
Thanks once again FlipperTD...that sounds sensible! Lol, a confused punter sounds about right! I thought either I'd got one incredibly good set of iron pills or become very clever , very quickly at gathering myself some iron stores!I'll keep on with iron then, Three Arrows soon arriving,then ask for a NHS retest in abt a month if so which will be 3mnthsish from the last & just forget abt this pinprick one. Was just concerned at overdosing if it was rising at such a rate!
I got my vjt d result ok, good old reliable 60 which seems to be consistent, winter or summer and active b12 & thyroid came out pretty consistant with last nhs.
Regarding the mch we've discussed before, asked my nurse if it /blood count could be checked now 4 1/2 months is up & she said b12 causes it, so it's normal! I explained how it should improve & she's asking Dr,so await to hear on that....so thanks for all your input on that too!
Out of curiosity, in general as I appreciate so many factors must come into play, what sort of rate might you expect iron stores to rise at do you think please?
Too complicated to calculate, I'm afraid! Iron absorption is a highly regulated process, so more in doesn't mean more stored, but extra iron in the circulation isn't a good thing. Once you've exceeded the carrying capacity of transport proteins then there's a risk of free radicals, and they're not nice things to be around. Nasty things, and best avoided. Iron best absorbed from diet, and iron from meat is probably better than other sorts. Cereal iron is tricky to absorb because of how it's bound. A cup of tea with your steak is a bad idea too, as the tannins will complex the iron. A glass of orange juice however? Much better.
Thanks Flipper Td, thought it may be, but worth an ask! Yes appreciate the dangers of it, but I’ve been and am experiencing a lot of symptoms that I believe are iron/b12 related & iron stores had lowered further since loading dose so I didn’t want it to get any worse. Past iron panels always seem to indicate I need iron even when ferritin is at 50-60, so I just try to go by that, rightly or wrongly?
I try from red meat, liver,fish plus eat nuts, seeds daily but it’s not enough. Take iron with vitamin c, now swopping to heme iron tablets to try and don’t drink any tea, just water. Thanks again…
Hi Flipper Td Could I possibly call upon yr wisdom agn please? I've found some results going bk & aside from very low ferritin, not great b12, it mentions underange potassium & alanine aminotransferase?Also above range total protein, globulin over a few yrs and eosophila(scuse spelling on that)
Are any of these in your area of expertise please? Many thanks on advance!
Under-range potassium is sometimes associated with 'stomach upsets'; a good dose of diarrhoea can result in a mild hypokalaemia. Likewise, it's often seen in folks who 'abuse laxatives'. Eosinophilia is sometimes associated with allergic/immune response, but it's not that simple. [Is anything?] A low ALT is not typically anything to worry about.
Thanks very much for yr help & so speedy too! That’s interesting to know abt potassium…never taken a laxative, but I was very underweight at time, possibly due to taking a lot of antibiotics that may have upset things or maybe just not absorbing well.
The allergic/immune response ties in, I’d not many yrs previous diagnosed with type 1 latex allergy, also having lots & still do, sinus issues. Went onto find on a York blood test a dairy & yeast intolerance.
A low ALT nothing to worry abt I read a little bit abt it that mentioned could be linked to a b6 deficiency.?
Yes thanks…great stuff! Any ideas on the protein/globulin please( some people are just never satisfied are they!:))
Here's another guess. Total protein can increase in in dehydration, in the same way as the Hb and PCV can. The makeup of the proteins is too complex to generalise here. Any immune response an certainly affect your proteins. With your eosinophilia that could link in. I have had dreadful sinus issues in the past. House dust can be a cause. When I was suffering particularly badly, we bought a new vacuum cleaner which does not have a dust bag. It did a superb job, but ate the carpets. I recovered from the sinus issue, with the addition of a steroid inhaler. I'm now off all treatment and it's stayed away. However, the last time it came back, I'd been bitten by horse flies in Austria, and got a splendid broad spectrum immune response. They're good at doing that!
Thank you again.. I work hard at keeping hydrated, but what goes on inside is maybe a different matter I guess!Sorry yve had dreadful sinus probs too, glad you've got it sorted and now medication free.
They found polyps in both sinuses, cat scan , said I've chronic sinus disease, try and improve my general immunity! That's when I delved a bit deeper and find dairy prob. It eased when I started b12 jabs last time around,so maybe th have an effect at some stage this time. I'm very blocked most of time. Tried the sinus wash, but it now just comes out same side it goes in! Tried curious sprays,but no improvement,lost smell/taste many moons ago! Inhaling vic/oil helps at times,but gets to chest.
Maybe will have to relook,but the wait at ENT,won't be anytime soon
Yes,got the hoover, and yes it must be eating everything besides! Have wood floor in bedroom, swopoed to natural mattress, wool bedding/pillows, made roman blind totally fire retardant free, damp dust, etc but something still gets up my snozzle!
Thank you for yr kind & reassuring words. I'm just trying to make sure I've not missed any clues along way to get rid of some of these issues
A colleague had a surgical sinus wash via ENT, and ended up in danger of liver damage from the number of paracetamol tabs she was taking for her chronic facial pain that she'd never had before. I suppose we've been lucky. The most useful help I had was from a pharmacist in Cyprus, who gave me the magic nasal wash stuff. It finally sorted it, and the stuff that came out? Urgh!
Gosh, poor her, how dreadful,dodge one of those if offered then! At least we escaped ENT without that treat!! Do you have the name of the magic nasal wash by any chance please? Wouldn't it be lovely to just discover a little magic answer for decades of bungedupness!
I've not seen the exact same stuff there, but if you fly me First Class to Paphos I'll go and get you one. Seriously, it was a balanced saline rinse in an aerosol.
Consider it done,lol! Better bring a suitcase full back, praps we can sell em off to pay fir yr fare! Am using one by sterimar at mo, so.prob that kinda thing thanks. Will keep a sniffing it up!
That's the same stuff. We didn't have them over here at the time. Folks had tried sea water [ooh!] and tap water [ooh!] and the effects aren't as good, but the buffered saline stuff worked for me.
The latest NICE CKS guidance says the following (there is more, e.g. specifically in pregnancy).
NICE > CKS > Health topics A to Z > Anaemia - iron deficiency > Diagnosis > Investigations
Interpreting ferritin levels
Serum ferritin level is the biochemical test that most reliably correlates with relative total body iron stores. Low levels indicate low iron stores, except in women who are in the second or third trimester of pregnancy.
In all people, a serum ferritin level of less than 30 micrograms/L confirms a diagnosis of iron deficiency.
Ferritin levels can be difficult to interpret if infection or inflammation is present, as levels can be high even in the presence of iron deficiency.
Ferritin levels are increased independently of iron status in acute and chronic inflammatory conditions, malignant disease, and liver disease.
Expert opinion varies as to the level of ferritin that is diagnostic of iron deficiency anaemia in people with chronic inflammation — people with a ferritin concentration of 50 micrograms/L or higher could still be iron deficient.
In chronic kidney disease and other inflammatory conditions, a cutoff of 100 micrograms/L has been advised but also needs to be interpreted in addition to other iron studies.
If inflammation is suspected to be spuriously affecting the ferritin result, other markers of inflammation (for example C-reactive protein) or measures of iron status (for example total iron binding capacity) need to be considered. Advice should be sought from haematology or clinical biochemistry if in doubt about the selection of further tests and interpretation of results.
A serum ferritin concentration of greater than 100 micrograms/L may not rule out iron deficiency anaemia, but a result greater than this level should be interpreted in addition to other iron studies.
For people with no known inflammatory states and in whom the ferritin level is indeterminate (31 to 99 micrograms/L) further tests may be required to ascertain iron status.
Thanks very much helvella, a good reminder for us all & our Drs!Im on a mixed feelings time! I came to a standstill & was diagnosed with M.E 24 yrs ago after few years of tonsil & sinus/ear infections & developing a type 1 allergy.
I've just got copies of old notes ti find ferritin was 11 at the time & b12 in 200's,same as when I was more recently diagnosed with a functional deficiency. Plus looks like some liver levels were out of whack then and eosophilia? If only I'd known then what Ive learnt on the way on here! Maybe b12 def was the reason I got so many infections & then the not so necessary antibiotics, 20 courses over 2 yrs at one stage were too much.
Still we can't go backwards can we,so now to focus on getting everything up to speed & getting whatI need!
Quite agree with at least 50 or below, mines 37 at mo since loading dose,was 48 before & the breathlessness,weakness & lightheaded is telling me that range is set too low!
Thank you Helvella, and I have yr excellent writings on iron too, & Three Arrows is looking like it may arrive v.soon!Been rather a long wait due to being a pre-order!It just seemed a liitke too good to be true that it's jumped from 37 to 86 in 5 wks of taking small amount iron, as much as I'd welcome it!
FlipperTd has made me release its abs no use comparing ferritin & will.stick to NHS as main level from now on & just keep requesting 3 monthlies until it gets nearer 100! I've got an iron profile from the sale too, as no way will my drs ever issue those, but have little faith in that working anyway it was just to get ideas of transferrin,etc, so it's bk to NHS fir this one! Many thanks again...
The red cell width doesn’t seem to be included on the full blood counts does it? Which seems a shame if that’s actually more helpful for b12/iron issues.
I’d really like to see it as fun, but I just seem to get more confused! Because MCH has gone overange I assumed that would be a useful indicator to gauge when I’ve had enough b12 after 100+ days, but seeing as ferritin is near to iron deficiency level that could be decreasing the MCH, rather than it be a case of the b12 lowering it. So basically, until iron stores adequate, I won’t know what’s going on?
Well if that isn’t enough to send packing up and off to the lakes again! Maybe I will just have to admit a little defeat as you’ve explained it well enough but I’m not sure I’m fully grasping…thank you very much for trying!
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but allowed another loading dose, & 3 monthly, which on discussion! have been swopped to every 2 months…
Do B12 injections deplete iron/folate &/or other B vitamins?
My doctors won’t investigate
