Haematocrit

[Graham7694]

Hi all

I haven't posted for a while but am interested how many have a high red blood count (HCT) when diagnosed with ET or MF

Thanks in advance

Graham

[clubdino]

Hello. I had a high hematocrit when initially diagnosed with ET. It stabilized over the years.

[mhos61]

Yes. High haemagloben and haematocrit when diagnosed with ET in 2016. Highest reading was hgb 16.1 and hct 47.9 (female).

Due to being 60, I was put on hydrea for ET which as well as lowering platelets have reduced hgb to an average 14.5 and hct to 41.

I know ET with the jak2 mutation often presents with higher hgb and hct levels, however, I’m also aware of ‘Masked PV.’ Incidentally, I’ve never had a bmb, but I do feel ET is the correct diagnosis. Whichever way, the treatment would be the same.

May I ask why you’re asking this question?

[Graham7694]

At initial diagnosis (following BMB) I was diagnosed with MF and started on Ruxolitinib and then HU was added to the script. My platelets were always the issue and never a problem with my other bloods. As second opinion and following a second BMB the diagnosis was changed to ET and I moved onto Pegasys. This brought my platelets down but now my HCT is increasing and went to .5 last month. I am Calr type 1 and really shouldn't be having high HCT.

[mhos61]

Does sound very odd!

‘Clubdino’ who answered your post above is CalR and surprisingly too has had issues with raised haematocrit.

How long have you been on Pegasys, could there be a connection? Maybe someone more knowledgeable can help.

[Alexbits]

Yes. My HTC was in 46-50 range and RBC was slightly raised to 5.6-5.7. EPO below normal range. I had a BMB. Also JAK2+. Diagnosed with ET but who knows, maybe it's something borderline with PV attributes.

[hunter5582]

I was diagnosed with ET over 30 years ago. HCT was within normal limits for many years. About 7 years ago, the ET progressed to PV and HCT became consistently elevated. My old hematologist missed the progression of the ET and is was not until about 5 years later that the correct diagnosis was made. I am fortunate to have a relatively indolent form of PV, so nothing happened because of the misdiagnosis.

It is important to understand that there is a continuum of MPNs between ET and PV. It is not necessarily one or the other. The MPN can also evolve and transition from one form to another over time. That is what happened in my case - or perhaps I had a masked-PV all along.

Hope that helps to answer your question,

[Graham7694]

Many of the symptoms I am currently experiencing are similar to PV so I do wonder. It is a very strange disease with very few straight lines. I will be having my bloods done again next week and have a video appointment at the QE the week after so will see how things go. I had a venesection following my last appointment so it will be interesting to see if that has helped

[charl17]

Six years ago I was diagnosed with PMF. My treatment is supervised by Moffitt Cancer Center in Tampa. My specialist does not want my HCT even close to 45. I am on Pegasys, 180 every 10. My platelets and whites are both borderline high but he is most interested in my HCT.

[Chaz1]

Hubby was originally diagnosed with ET but overtime I noticed his HCT, HGB & WBC were high & increasing. (I was a bit more clued up after a few months).

He had a second opinion at a specialist hospital & diagnosis changed to ET/PV. He then had a BMB which confirmed he had a MPN but didn't confirm which one. He has venesections & aspirin which in general seems to be ok & not spiking his platelets too much. The reason he's not diagnosed as full PV is because he's not high enough under the guidelines to be diagnosed.

[Minu68]

Hi Graham,

I have ET JAK2. at the time of diagnosis, my haemocrit level was at .5, so slightly higher than the referance amount. Looking back, this had been the case for over a couple of years, with my platelets having been above reference value for around 10 years....

My white cell count, neutrophil, basophil and monocyte also above reference levels.

These are counts from my patient records at the gp. Since being under the care of haematology, I don't seem to get any information other than what my platelet count is. Might ask next time, given people's experiences, thank you all for sharing and Graham for asking