can we have B12 injections to lower MCV and MCH.?
My RBC is below range my hct is below range. Folate low B12 in serum shows in range but as we know people with myloproliferative disorders will get B12 results in range but it’s not getting to cellular level
This is something you need to discuss with your haematologist, best wishes, Maz
If I recall correctly, you are taking hydroxycarbamide (HU). HU is a cytoreductive medication that lowers the production of all types of blood cells. It also causes macrocytosis, which is indicated by elevated MCV and MCH. Macrocytosis when taking HU is not considered to be a problem. It is normal and expected on HU. Some doctors use this to monitor whether the patient is taking the HU.
Suggest that you review your status with a MPN Specialist who can best explain your CBC values in a case specific fashion.
Professor Harrison already told me haematologist to reduce HU instead of increasing it and to refer me to Rheumatolgy.
Worked quickly as saw rheumatologist on Tuesday
She said high ESR drives platelets up . Had 3 increaed last year . High esr now for 2-3 years
That makes sense. High ESR can result from high inflammation which does cause reactive thrombocytosis. The overproduction of inflammatory cytokines is part of what the deregulation of the JAK-STAT pathway causes.
Treating inflammation is an important part of treating MPNs. This is what I consult with an Integrative Medicine doctor about. I am using a combination of curcumin, L-Glutathione, and SPM Active (pro-resolving mediator). This combination does make a difference in inflammatory symptoms such as osteoarthritis.
Wishing you all the best.
I already take warfarin I don’t really understand the rest you’ve said
Warfarin is an anticoagulant that reduces risk of thrombosis (clotting). It would not impact inflammation. Reducing the risk of thrombosis is only one of the elements of treating a MPN. There is also the risk of hemorrhage (bleeding/bruising) and the secondary or constitutional symptoms that need to be considered: fatigue, insomnia, pruritis, erythromelalgia, dizziness, headaches, etc.
Many of the other symptoms experienced with MPNs are related to the overproduction of inflammatory cytokines. Cytokines are key regulators of many functions in the body, including inflammation. The production of inflammatory cytokines is regulated by the JAK-STAT pathway, one of the body's kinase systems. The JAK-STAT pathway also regulates the production of blood cells. The driver mutations that cause MPNs (JAK2, CALR, MPL) all cause the JAK-STAT pathway to be overactivated. This causes the overproduction of blood cells and inflammatory cytokines.
Erythrocyte Sedimentation Rate (ESR) is a blood test that measures how quickly red blood cells sink to the bottom of a test tube. The test can indicate inflammation in the body, which is the immune system's response to injury, infection, and other conditions. MPNs are one of the other conditions that can cause elevation in ESR due to the systemic inflammation we experience. Note that when we have an infection, injury or other inflammatory issue. this can compound the problem and increase platelet levels (reactive thrombocytosis).
Hope that helps to explain the issue.
You should be happy.Talk to your doc to reduce your dose and there is no need to inject B12.
Cheers
All of my FBC parameters are 'out of range' but the Haematologist says that this is normal when on Hydroxycarbamide and is not worried 😀
My dad had B12 deficite dementia that started at 60. No supplements worked because he wasn’t absorbing B12 due to a gut problem. The doctors first caught this at 78! But, my mom was rarely bringing him to the Dr to get his B12 shots. Because of low RBC and low Haematocrit that was constant, his brain (and body) was starving for O2. Once my mom died and I got him into a home in Athens, at 84, he received his injections regularly and till he passed from cancer at 88, he was regaining his brain. He even got to know me and converse with me, but he didn’t remember our lives together as his daughter. Incredible.
This really needs to be checked out if the B12 in low on the cellular level! That what really counts.
you might get away with that if ET but I didn’t hear that B12 can lower MCV and MCH, with PV B12 increases reds production and can increase MCV etc. Hydroxy increases MCV.
There is another test you can do with MPN for testing B12 more accurately, Clair Harrison wrote about that some years ago (it should be somewhere) or even better if she is one of your docs she is the best person to ask.
In other words as Maz suggested best do nothing until running it by your Haem.
Hi this feels quite topical for me, as I recently had my heamotology team test my Vit B12 and D levels, the Vit B12 is surprisingly high - at 1181 ng/ltr - I have tried to speak to my haemotologist about this but she is on summer hols atm. I am also awaiting results of a recent VAF test and Bone marrow biopsy - so think I need to have a good think about all of this once I have the results, as for the past 7 years have been managing only with aspirin and vene. It feels that I will probably start INF this autumn - I was interested with what you shared Hunter regarding the supplements for cytokine activity and the test for the red cells, I will look further into this as well have taken L-glutathione in the past but haven't heard of the SPM Active.
Have a lovely weekend, Sarah
Have you taken any supplements with B12 in them .
I had been taking a multi B supp, but have stopped now until further notice, I understand that there is a substance that PV (i.e. what I have) and leukaemia patients can produce which I have forgotten now what it was which can elevate the level, around a year ago my readings for Vit B12 were around 800 and some, so it is the elevation which is of some concern. I shall let you know what I find out, Thank you.
1.
Diagnosis of vitamin B12 deficiency in patients with myeloproliferative disorders.
Cinemre H, Serinkan Cinemre BF, Çekdemir D, Aydemir B, Tamer A, Yazar H.
J Investig Med. 2015 Apr;63(4):636-40. doi: 10.1097/JIM.0000000000000187.
PMID: 25730455
hi. Just sent link to article that may help. Double whammy, as we have high B12 need ( I have PMF) and standard tests over estimate. I have monthly B12 shots ( when I remember…)
where’s the link please??
Its the article I sent the citation of. Not link.
1.
Diagnosis of vitamin B12 deficiency in patients with myeloproliferative disorders.
Cinemre H, Serinkan Cinemre BF, Çekdemir D, Aydemir B, Tamer A, Yazar H.
J Investig Med. 2015 Apr;63(4):636-40. doi: 10.1097/JIM.0000000000000187.
PMID: 25730455
Here it is again.
I can’t see what any of that means.
I can’t see information of citation just names and numbers
one more try.
Diagnosis of vitamin B12 deficiency in patients with myeloproliferative disorders.
Cinemre H, Serinkan Cinemre BF, Çekdemir D, Aydemir B, Tamer A, Yazar H.
J Investig Med. 2015 Apr;63(4):636-40. doi:
No that’s no good
or google vit B12 deficiency in patients with myeloproliferative didorders.
Vitamin B12
Vitamin B12 deficiency 
Pegasys working too well?
Spacing between Peg injections
