MCV & MCH

[diamondgirl9022]

I have posted a chart of my MCV & MCH as I have recently got copies of blood tests. As you can see most of the mch have been flagged. Looking at getting MMA and Homocysteine tests as my last Active B12 66.1 pmol/L (25.1 - 165 pmol). Need to be tested for PA as well.

[JanD236]

It’s difficult to comment without seeing the upper and lower limits of the range for each test. However, your active B12 is comfortably within range so on its own doesn’t suggest a B12 definitely.

High MCV can be caused by a B12 deficiency (which doesn’t seem to be the case) or folate deficiency so I wonder if folate was tested at the same time your MCV result was high? Nevertheless MCV looks likely to be in range in the later results. I think thyroid issues can also cause high MCV.

I’m sorry but I don’t know what your other results would suggest. Is there a reason you’re thinking of having MMA and homocysteine tested?

[diamondgirl9022 in reply to JanD236]

In 2005 I had a major stroke followed by a small stroke 4 months later. Over these 17 years getting steadily worse, to the point of numbness, tingling, dizziness, gait problems, so fatigued. Joints and muscles pain, arthritis confirmed on right foot, ankle, knee, hip and spine. No x-rays on the rest of me yet. For the past 7 weeks chronic coccyx pain.I'm 51 but feel like I'm 87. Ferritin 33 and iron saturation 20.6%. If Active B12 below 70, further investigation is needed. Seen a haematologist about low neutrophils and they comment - highly likely Autoimmune. I need to ask GP to refer me to a rheumatogolist.

[JanD236 in reply to diamondgirl9022]

Sorry to hear you have so much going on. Wish I could help!

When I was first diagnosed with PA (I was ‘lucky’ as my IFAb test was positive so I obtained an early diagnosis) my serum B12 was below range and my active B12 was not only below range but also below the level at which the lab could measure it (13 from memory). However, I have read posts on this forum from people who have ‘functional B12 deficiency’ whereby the tests gave normal results but B12 was not reaching cell level.

[diamondgirl9022 in reply to JanD236]

Thank you for your reply. Perhaps I'm clutching at straws, but I willing to rule anything out. I asked my GP to test for Pernicious Anaemia - You're not anaemic was his reply. My reply back was - I don't think you have to be. He then changed the subject.

[JanD236 in reply to diamondgirl9022]

A common misunderstanding by doctors. Anaemia is the end game, there’s all sorts of other symptoms before then.

[Cherylclaire Forum Support in reply to JanD236]

Ordinarily, methylmalonic acid (MMA) links with B12 to continue on to cells, tissue.

So a lack of B12 can cause MMA to build up in the bloodstream until addressed.

This is rarely tested at this point, not usually measured, but consultants have told me that MMA can build up to very high levels in serum if B12 deficiency continues.

If, after B12 deficiency has been addressed, the MMA is still raised in bloodstream, it could suggest a problem in forming the necessary link with B12. It would be expected that MMA level would drop back to normal levels once the initial 6 injections, the loading dose, have been given.

Functional B12 deficiency, if suspected, would be able to be diagnosed if serum MMA level remains raised after B12 is replete, as long as renal problems are ruled out as a possible cause of raised MMA (blood test).

SIBO (small intestine bacterial overgrowth) can also be ruled out as the cause -by fasting breath test series. This bacteria can rob a host of vitamins -including B12 deficiency.

So diamondgirl9022 - MMA could be something you want to have tested.

Folate (5 ? ug/L) and ferritin (33 ? ug/L) levels look low to me, certainly low enough to cause additional problems, but any B12 issue should be investigated first if you suspect this to be the major cause of your symptoms. How is vitamin D ? Thyroid ? Many people here have found B12 deficiency will also be accompanied by problems in these areas.

Maybe you are clutching at straws, but so would I be if I felt 87 at 51.

My B12 was treated when at 196 ng/L (range started at 197) because of symptoms- but no response from loading injections, deterioration on maintenance dose of one every 3 months. MMA was checked -it was raised.

Folate and ferritin low within range, osteoprosis of the spine found.

Once all else ruled out, functional B12 deficiency was diagnosed. MMA finally dropped into range after 3 years of frequent B12 injections. Folate and ferritin were erratic for two years but gradually settled at better levels (still need checking on every now and then), and even osteoporosis now reduced to osteopenia - which I was not expecting.

I'm 64, and mainly now feel ..... 64 !

[diamondgirl9022 in reply to Cherylclaire]

Thank you for your reply, most helpful. My vitamin D is also low 34.5 nmol/L. Serum B12 276 ng/L. I have had X-rays on my Right foot, ankle, knee and hip, which have come back showing arthritis, as well as in my spine. My joints hurt all over, but haven't had any scans or X-ray other than previously mentioned. My Coccyx has started playing up over the last 2 months, I feel like I'm falling apart.

I have emailed GP requesting more testing and referrals to private tests, fingers crossed. Meanwhile I'm waiting for a bone marrow aspiration and trephine for rule out any thing sinister due to low neutrophils xx

[diamondgirl9022 in reply to Cherylclaire]

Hi I've just got the results of MMA (serum) 37.4 ug/l <32

so it looks like B12 deficiency.

At last I'm getting somewhere

[Cherylclaire Forum Support in reply to diamondgirl9022]

Good - really glad to hear it. Yes, you are getting somewhere now.

Renal problems can cause raised MMA so have that eliminated as cause if you have not yet (blood test). Later, SIBO may need to be eliminated as another cause. I don't recall any other cause being ruled out along the way. SIBO would in any case raise MMA because the bacteria feed off your b12. So not vital to rule out prior to treatment.

I was then restarted on a different frequency of B12 injections: in place of EOD, the best that the GP could offer was 3x weekly (which of course was a relief) - immediately reluctant nurses said that 2x weekly the most they could do.

Still a relief !

[diamondgirl9022 in reply to JanD236]

My folate was 5ug/L

[JanD236 in reply to diamondgirl9022]

Which I’m guessing was in range?

So that leaves maybe thyroid to be considered?

Although self injecting, having folate high in the range, and feeling generally fit and well my MCV is usually at the top of or above the normal range. Not sure why but I assume it’s thyroid related as my thyroid results are usually slightly iffy.

I’ve never had an iron problem so I’m not sure what those results mean for you.

[diamondgirl9022 in reply to JanD236]

I will book a private thyroid test as GP only tests TSH

[jade_s]

Those results do not exclude b12 deficiency especially if the ones with ! indicate out of range. Plus RDW seems to trend high at times and that can also point to b12d.

I myself had only 1 test over several decades with high mcv and low mch, and continuosly normal b12/mma/homocysteine levels, yet still developed raging numbness & neuropathy.

MMA & homocysteine are worth testing but even when they are in range, a trial of b12 injections is really the only way to know for sure.

Folate & iron saturation are both tending low but a serum iron would be beneficial to get.

[diamondgirl9022]

Thank you Jade. I'm looking at asking for a trial of B12 injections after having MMA, Homocysteine and Pernicious anaemia tests. My ferritin is also low. I will ask Haematologist about serum iron, is it normally done with an iron panel? The only results she sent was ferritin and Iron saturation. Do you self inject now?

[jade_s in reply to diamondgirl9022]

Yes an iron panel would be the way to go :

serum iron,

TIBC (shows how much capacity you have to absorb iron so some with low iron can only take small amounts if this value is low, but usually will be high with deficiency),

% saturation,

and ferritin (storage iron).

I do self inject, almost 6 years now Had to go that route after getting kicked out of my GPs office. I was bawling all the way home. Tablets make my levels go up so I guess I must have a type of functional deficiency. Managed to self diagnose my mother and sister as well, they had symptoms despite tablets and high levels as well, though they have now both found doctors willing to prescribe (in the US). I'm still going at it alone.

SI has CHANGED MY LIFE. I had pretty severe cognitive decline where i couldn't even recognize numbers, total numbness from fingertips to elbows, big yellow spot blocking my vision, etc etc, can you believe the doctor refused to investigate further?!! Looking back i had paresthesias for years - bugs crawling on scalp, face, and elsewhere, and balance issues and problems gripping things going back several years. All solved now thankfully but it did take a good few years of daily SI before I felt half human again.

I'd say get as much testing as you can, but even if everything comes back 'fine', you have absolutely nothing to lose from a trial of injections. You can source your own in many countries. I assume you're in the UK?

Have you had intrinsic factor (IF) and gastric parietal cell antibodies tested? Medichecks (if i remember correctly) has a home panel that includes IF antibodies.

[diamondgirl9022 in reply to jade_s]

Wow, I'm glad that SI has worked for you. I'm in the UK. Just sent email asking GP for IFAB, PCAB and Serum gastrin tests. Hoping he will refer me for private tests. So glad you have been able to help your mum and sister too.

The GP told me I am depressed and to take anti depressants!! My partner just laughed when I told him. I get down with feeling like I do, but I would rather get to the root cause of it all. Thank you for such a positive reply, there is hope for me yet xx

[jade_s in reply to diamondgirl9022]

Great start! Just keep on pushing and you can't get any further!

The number of times I have been offered anti depressants and anti anxiety meds, whew! Makes me depressed just thinking about it 🤪

[diamondgirl9022 in reply to jade_s]

They seem to hand anti depressants and statins out likely smarties. My 25 old son has started on Sertraline anti depressants without a blood test, no problems getting them from GP!

[jade_s in reply to diamondgirl9022]

Was just rereading this and had a thought. Autoimmune diseases tend to run in families, and having 1 means you're more likely to have others, so your son might consider getting tested for B12D, thyroid, and celiac. Anxiety/depression can be caused by any or all of these. Depends on if he's open to it of course, but something to think about! Each has its own proper testing protocol though, so I'd say put up a new post if you're interested for yourself or for him or even better ask on the thyroiduk group, they have the best info on thyroid testing. healthunlocked.com/thyroiduk

[Cherylclaire Forum Support in reply to diamondgirl9022]

Think I had to decline amytriptyline three times at first. IFab test can be useful - if positive, pernicious anaemia will be diagnosed.

If negative ? Well, 40-60% of those with PA test negative.

Problem is that some GPs will use a negative test result to prove to you that you do not have PA. This is not it's purpose. It is not a "pernicious anemia test" - there really isn't one.

Push, yes, but getting elimination tests for all else is sometimes the only way to get there- this will take time, one consultant after another not finding what they are looking for (rarely does B12 deficiency occur to them). If you find that you are deteriorating, don't think of self injection as giving up.

While I was found to have raised MMA levels 5 times before the 6th test showed me in mid-range finally, homocysteine was "normal". May be better to start with MMA.

[diamondgirl9022 in reply to Cherylclaire]

Thank you. I was 34 when I had a major stroke, I haven't yet got hospital records to see if they tested Homocysteine and MMA. I know that was back in 2005, but it would be interesting to see if they had.

[Cherylclaire Forum Support in reply to diamondgirl9022]

Very young to have to cope with that. You'd imagine that because you were outside the norm, extensive tests would have been performed then to attempt to discover why. Interesting yes, and could be useful, but anyway worth checking up.

I had a look at some of my FBC results - particularly for ranges for MCV and MCH.

MCV range: 82.00 - 98.00fL usually (latest, 83 -101 given).

MCH range: 27.30 - 32.60pg seems to be on all of them.

Mine were never out of range, so unsure at what point higher levels would be of concern.

Perhaps FlipperTD can tell you whether your results are sufficiently high to give any pointers here.

For those who are wondering why these can be important :

MCV (mean corpuscular haemoglobin) - measures average size of red blood cells: larger than normal can indicate B12/folate deficiency, smaller than normal can indicate iron-deficiency. This can get confusing if both macro- and microcytic red blood cells are present.

MCH (mean corpuscular haemoglobin) - calculation of how much haemoglobin (carrying oxygen) inside red blood cells: macrocytic cells being larger would likely be carrying more.

[diamondgirl9022 in reply to Cherylclaire]

Thank you, very informative. Hopefully something will show on my hospital records, if so I will post on here xx

[KEFNB]

Hi diamondgirl9022, My MCV was below normal most times when tested even when my B12 was greater than 2000 ( the highest the test in both of the main labs here in the states). I was exhausted, on Armour Thyroid, and taking a multitude of supplements daily in hopes of feeling better. I also had fibromyalgia symptoms and a sore throat daily. I had been diagnosed with chronic fatigue syndrome, which I believe was real because it all started with two bouts of mononucleosis

Years later, I had a large bowel perforation from an infected diverticulitis which ruptured.

I mention all these things because I have good reason to believe they are connected.

The ONLY thing that gave me energy was B12 injections , but the improvement would only start in about four days and leave in three. I kept increasing the frequency of dosing until I felt quite good without bad days. I am currently self injecting every M,W, and F. Daily sore throats resolved

I re-added methyl folate ( which didn’t seem to do much before injections even though I have two SNPS on the MTHFR gene) and my slight, lingering symptoms resolved

I have a long history of issues with constipation likely going back to when I first contracted mono.

I started on a combination of anti viral medications by a doctor here in the states (Skip Pridgen) who is a Gastric Surgeon, who found that some people healed from removing a problematic part of the large intestine and others never got better. He became convinced it was because of a viral infection in the bowel

My bowel symptoms are almost entirely gone! I haven’t started to reduce my B12 injections yet, but, in time I’m sure I’ll be willing to test. I think that he hit the mail on the head as to why I was so sick for so many decades-I think my bowel issues created functional B12

I am currently off thyroid medication with no return of symptoms

From what I’ve read on PubMed, the people who do pretty well with Chronic Fatigue Syndrome take frequent B12 injections, also supplement with oral and often are on thyroid meds.

I don’t have any of the usual tests most people here have re: pernicious anemia and functional B12 , because from the moment my friend gave me a B12 shot to test and I felt good for the first time in decades-my quest became getting more injections which I was able to do because of this site.

Hopefully, my gut will heal enough so that I won’t have to procure the B12 on my own.

I hope my story helps someone who is suffering

[diamondgirl9022 in reply to KEFNB]

Thank you for posting your story, it gives me hope.

I'm going to do a few more blood tests and then start on B12 injections, I'm sure I need to start on 5mg of folic acid first. I have been constipated since my teenage years and also suffered my GERD,

The only way to start feeling better is to buy our own supply of B12 as the NHS will only do loading doses for 2 weeks and 1 injection every 3 months.

I'm so glad you have started to heal yourself and share your story to help others. I really do appreciate your time and help xx

[jade_s]

Just another note, if you've never had a b12 injection it's best to get the 1st from a medical professional or at a health spa. There's a very rare but possible chance of having an allergic anaphylactic reaction to injections.

Also i'm not sure who this post was in response to. You need to click on the blue 'reply' button under someone's post for them to get notified of the post, otherwise you've just replied to yourself Or tag them like this diamondgirl9022 by typing "@" and then their username and then click the name on the dropdown box that pops up.

[diamondgirl9022 in reply to jade_s]

Thank you Jade, I will make sure it is in a medical setting. Sorry about the replying, I will blame it on my stroke brain. Hopefully I will get the hang of it from now on. Thank you for bringing to my attention xx

[jade_s in reply to diamondgirl9022]

Oh no worries, I just mentioned it in case you weren't aware. We all get the darn brain fog

Good luck and keep us postedQ

[diamondgirl9022 in reply to jade_s]

Thanks Jade, I wasn't aware. I will post on here when I've had the tests. Thanks for your help xx