What indicates anaemia

[JP1952]

Can anybody shed any light on my blood count please? My red blood count is low, hct 37 and my haematologist said it's nothing to worry about but I am struggling with my running in that although I feel I'm pushing myself as hard as possible I'm 5 + minutes slower doing my park run from pre pandemic days. Or am I just getting old?

[Wyebird]

I’ve just looked up the normal range and you are in it. I always get a copy of my blood results.

You need to look at the haemoglobin levels first. Fatigue is common with our condition and is increased with medication. My fatigue was once caused by vit D deficiency Good luck xx

[cmc_ufl]

While your hematocrit is technically in the "normal range" for women, it is important to look at what YOUR normal range is. It is the trend over time for the individual, rather than humanity as a whole, that matters most when we evaluate our health. If these values are uncharacteristically low for you based on your historic bloodwork, I might consider looking into it a little further.

[Wyebird in reply to cmc_ufl]

I like the fact you’ve mentioned ‘ normal range for you’ I totally agree. I don’t think this is ever considered.My platelets before ET were below 300. Now a feel like a lump of lead if they are over 450.

[JP1952 in reply to Wyebird]

Thank you all for your answers. I'm trying to get familiar with my blood test results and what they mean but it's a slow learn. I gave my haemocrit number because I was previously told that's the all important one. So my platelets are 445 -high, RBC 3.23 - low, Mean cell volume 114 -high, mean cell haemoglobin 38.1 high. Does anybody know would any of that explain my struggle with fatigue?

[mhos61 in reply to JP1952]

That rbc count is below the recommended value, and probably does account for your fatigue, see below.

If my rbc falls below 4.2 (which it does occasionally) it is indicated with an asterisk next to it.

nhs.uk/conditions/red-blood...

[JP1952 in reply to mhos61]

Thank you.

[Wyebird in reply to JP1952]

As for what they mean I still find it hard. The GP blood test results are easiest to follow they flag up if you are out of range. It’s those I look at and compare and question.My haemoglobin and platelets are the ones that I keep a special eye on as they really do usually confirm how I feel.

[JP1952 in reply to Wyebird]

Unfortunately, it's impossible to see a GP where I live, I don't think it's known there that I have a condition, so my bloods are always done by the hospital. Can I further bother you and ask what are the implications of high platelets as mine stubbornly refuse to go lower than 400. Would that cause fatigue?

[jointpain in reply to JP1952]

Hi, after your post telling me about MPN Dr in South Wales I thought I'd see your profile, and came across this post. You say your MCV is 114, normally this should be between 80 and 100. Over 100 often indicates pernicious anemia, which could be why you are so tired/fatigued, I don't think it is normally so high with ET or PV. There are tests you can have for Pernicious anemia, though not very accurate, (high percentage are false negatives)Injection regime of Vitamin B12 could reverse the effects and bring your MVC back to normal. I doubt it will stop the itching, but may help.

My wife had the itches before losing her spleen, though I get her to take a B12 tablet each day along with folate, we think the itching was caused by high platelets.

[JP1952 in reply to jointpain]

Hi jointpain, Thank you so much for pointing this out to me . I always ask the consultant what do the abnormal blood results indicate and I am always told they are nothing to worry about. I am seeing him Thursday so I shall ask.

Since my last post I have started the Mithridate trial and I have been randomised to take ruxolitnib. After one week the itching has already subsided so I am very happy.

[AndW65]

I have PV, with me a good indication of anemia tends to be my very low Ferritin levels and my MCV. This year has been rough with really bad bouts of fatigue, (to the point where I was house bound for days, feeling exhausted and sleeping all the time). I ended up on a short stint of iron supplements and Hydroxy to get my levels back in check.

[JP1952 in reply to AndW65]

Thank you for your reply. My blood results didn't show ferritin levels, and interestingly your MCV is low whilst mine is high so that wouldn't account for my fatigue. I might email the nurse for the full results as my energy levels have definitely plummeted and the half marathon I was planning is now a distant dream.I'm sorry you've had such a rubbish year, I hope things have now improved for you. It's hard work making sense of this disease.

[mhos61 in reply to JP1952]

I’ve been reading your past posts. I see you were considering a change to Pegasys, did you make that change? I ask because if you haven’t, it just may well be the answer for your particular case.

[JP1952 in reply to mhos61]

Thank you for your interest. I haven't made the switch to interferon.A year ago I saw an MPN specialist because I was struggling more with the pruritus at the time. He stated my bloods showed PV as well as ET, and for my symptoms I needed to try a different medication, ideally ruxolitnib or interferon. The only way I could get on on interferon was via the Mithridate trial which would be a 50% chance of rux or staying with the drug I was already on which for me is hydrea.

I have opted for the trial and my reason for that is because my care will now be under an MPN specialist who has confirmed I was originally misdiagnosed in 2019. I am currently being screened for the trial and will be randomised to my allocated drug in October. The trial will run for 3 years.

I know there is still 50% chance I am on hydrea for the next 3 years but I am going to commit to this trial. I am so happy to have switched doctors.

I could write so much more, the last year has been very frustrating and am hoping you can read between the lines.

Once again thank you for taking the time.

[mhos61 in reply to JP1952]

I am so sorry to hear this is the only way you can get potential access to Pegasys. The only reason I can think of why this might be is because you live in Wales?

On the positive side, you will be comforted by the fact that you will now be under the care of an MPN Specialist.

It’s because of people like you participating in these important trials that we learn so much, so as someone with an MPN I’d like to thank you for your commitment. I wish you well and fingers are crossed for you that it will be favourable.

You will have to update us from time to time.

Good luck

Mary x

[JP1952 in reply to mhos61]

I think I could have got interferon eventually but it was taking ages, I had the impression my original haematologist kept delaying. On two occasions I had appointments to be shown how to inject myself and both times he rang several days before to do a telephone appointment. Anyway like I said it's a long story. So here I am hopefully starting a trial, and if for some reason that can't go ahead I shall be referred back to original haemo and I can request interferon once again .I really want to stay with new consultant who thinks rux would be my best option for the pruritus. As you say at least I'll be getting specialist care.

So of course I'll keep you all posted about the trial and share anything I learn.

Jeanne

[mhos61 in reply to JP1952]

That all makes sense then, if the rux is the best option for the pruritis.

As bad as the pruritis is, it should be a good indicator of which drug you will have been put on early on I would have thought! I really hope it’s rux for your sake, quality of life is so important too.

Sending the best of wishes your way.

Mary x