Good morning all has been a worrying time for me lately. I have just been through a cancer 2WW for colonoscopy due to high amount of blood in Q-Fit stool test.. Thankfully colonoscopy showed 2 polyps, diverticulitis and haemeroids.
GP rushed me in about 3 weeks ago to look at a weird rash which suddenly appeared on my leg (cappilliaritis he said) but did blood tests for everything.
I had a phone call to discuss these on Friday and I asked about my high MCV (104.5) - was 101 in March and MCH (34) - was 37 in March and low RBC 3.74) - was 3.00 in March, Serum protein electrophoresis result also said "mild acute phase ? inflammation/infection. I basically asked if I should be self injecting more to which he replied that my B12 and Folate were through the roof last time he checked them (he doesn't check them anymore as he knows I self inject). I gave him Dr Chandy's book years ago and he doesn't give me any grief. He asked if I drink a lot, stated thyroid is fine and said the only other thing to check is bone marrow. He has asked me to go for a blood test for myelodysplasia/ haemolysis.
I haven't told anyone else about the blood test but I am slightly worried. Is it possible that the high levels could still be due to my B12 even though I self inject once a week and feel okayish in myself.
Thank you for reading ❤️
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Ipsofacto01
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Both high MCH and MCV represent having large red blood cells , which means there are not enough of them maturing to the smaller size that they need to be , to get to where they need to go . ( what an odd sentence !!!)
, You might not be getting enough oxygen in your blood , Are you easily getting breathless when you exert yourself ? Your doctor must investigate this . Make an appointment asap . But it’s actually what happens with B12 deficiency . But I expect that there are other reasons .
Thank you for your reply Wedgewood. I do get breathless and very tired (napping every day for a couple of hours) but I put that down to the vestibular neuritis I had in January, although the acute vertigo and dizziness that has followed ever since was never properly investigated.There are no blood test appointments available until end of September but I will be sure to report back in case it helps someone else.
Perhaps try injecting a bit more often . Even if B12 is not the reason , you will do yourself no harm
. I also recommend you to get an oximeter , which will tell you the percentage of oxygen in your blood . I bought one from Amazon called LPOW OXIMETER . I compared it with the hospital one and it was really accurate’ Also it squeaks when your oxygen gets low ( 93% or lower !) It was very useful indeed for me . Mine was so low I went to A & E and had a pacemaker inserted!
In fact it was a really simple procedure . Took about 40 minutes . No general anaesthetic . Just local . Has made a huge difference . Nothing to be worried about .— but yes , I was scared beforehand , but found out that I needn’t have been . 👍
Hi - To be honest I wouldn't take the Dr at their word that your thyroid is fine. I'd ask for the lab results or if you have access to them already online check them yourself. If TSH over say 3 I'd look into it further. I have hypothyroidism and high MCH and MCV are a problem which reoccurs. I supplement with Bs but don't inject. When my B12 is high my MCV falls into the normal range. So Drs care more about the high B12 than when the MCV high which is annoying!
Thank you for your reply. My TSH was 1.2 when taken a couple of weeks ago. Both my parents died quite young from rare cancer/diseases, so any mention of anything like possible myelodysplasia does make me worry, especially as my MCV and MCH are steadily rising month by month it would seem 😞
Scientist, not medic. [My background is haematology.]
Your colonoscopy and Q-Fit test indicate blood loss, and blood loss leads to iron deficiency. Each millilitre of red cells lost equals one milligram of iron lost. Correction of the blood loss leads to recovery eventually. To recover, you need adequate iron stores, B12 and Folate.
If you're self injecting B12 then you're probably getting enough there. Thyroid problems can lead to a raised MCV. Alcohol intake can lead to a raised MCV. Everyone's different. It might be worth asking for a reticulocyte count with your next FBC.
Stick with your GP. He seems to make sense. Good luck,
Hi again FlipperTD, hope you don't mind me troubling you again but I had my bloods done this morning and then the results below were posted to my NHS app this evening. The B12 doesn't seem that high considering I self inject once a week. I think I may be in for a talking to though 😔Not sure what other tests he's orderd but I guess this result rules out B12 & Folate being the culprits for high MCV?
Hi Sleepybunny, thank you for your reply. I take Folic Acid 5mg daily on prescription and SI B12 every Saturday, so I don't think I'm deficient in either of those. Although, I assumed that's why my MCV and MCH were high, I didn't realise there could be other reasons and I don't drink really.I have managed to get a cancellation blood test for tomorrow. I will keep you all posted. Thank you again.
I didn’t know you could have a blood test for myelodysplasia? My haematologist made me have a bone marrow biopsy (yesterday) to find out if that’s what I have so I understand how stressful it is. I don’t really have any symptoms except bad blood tests I will find out next week. I don’t know what to suggest because I’m over everything myself. I am having B12 injections every 3 months and last recorded from blood test was 1275. My last film comment was “Mildly macrocytic red cells with occasional ovalocytes and rare tear drop cells. Marked neutropenia with mild toxic granulation in occasional neutrophils. No blasts seen. Few reactive lymphocytes. Marked thrombocytopenia with few large platelets. Consider drug effect or bone marrow pathology such as myelodysplasia or infiltration.”
So thats why I had to have the bone marrow biopsy.
My MCV was 100
My MCH was 33.4
I’m confused by a lot of it - I’m not tired, I don’t get breathless although that being said I used to walk 10km a day but could barely walk at all for 3 years (had hip replacement surgery and I’m now walking again but not up to 10km yet)
Just wanted to know you aren’t alone. All the best.
Thank you for your reply Tellingbones. I'm so sorry you're going through this. I think you're right, you can't have blood test to diagnose myelodysplasia. My GP had requested additional blood tests on top of the ones two weeks earlier. Thankfully, they came back normal apart from RBC under differential white blood which read "RBC shows mildly macrocytic picture".
I hope your biopsy goes okay and that everything is okay. Thank you again for taking the time to reach out to me in what must be a very worrying time for you ❤️
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I will find out next week. I don’t know what to suggest because I’m over everything myself. I am having B12 injections every 3 months and last recorded from blood test was 1275. My last film comment was “Mildly macrocytic red cells with occasional ovalocytes and rare tear drop cells. Marked neutropenia with mild toxic granulation in occasional neutrophils. No blasts seen. Few reactive lymphocytes. Marked thrombocytopenia with few large platelets. Consider drug effect or bone marrow pathology such as myelodysplasia or infiltration.” 
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