Four hours later than scheduled, my haem called to say that she thought I’d benefit from a venesection and that I should also increase my weekly PEG dose, before realising that I have ET, not PV.
Latest results:
Platelets: 374
Hb: 152
Hct: 0.465
LDH: 236
Neutrophils: 3.62
She told me my LDH is slightly higher than the upper reference range, although some labs have it at 240 or 250. Anyone else experienced this?
No venesection required and she’s not worried about my hematocrit after all!
However, she is referring me to Prof Claire Harrison for a second opinion on my cytoreductive therapy, just to make sure I’m really benefitting from PEG and wouldn’t be better off on HU. I might also be considered for a trial (Bomedemstat?). No doubt Prof H will want to do a BMB to establish a baseline - well, I suppose it was inevitable at some point. She said, no evidence of disease progression and not at all worried…
Feel fine in myself and still asymptomatic, but a very unnerving experience to have such a phone call.
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Those results do not seem too concerning to me, although I must stress here, I do not have any medical background.
Is it just your LDH levels that have concerned you?
It’s quite possible the haematocrit levels could be related to your hydration levels on the day of the blood test. I’m not too sure on the significance of raised LDH in relation to MPNs, but I’ve noted others on the forum with raised levels too. Maybe it’s just an indicator that you need an increase in Pegasys.
It’s really important to note that you’re still very early days with regards to Pegasys treatment, maybe dose titration and patience is all that’s required.
The positive here is that your haematologist has referred you to Professor Claire Harrison. You’ll be in good hands!
I recently requested a referral to Guys. It’s the best decision I’ve made since my ET diagnosis in 2016.
Many thanks. Yes, I originally thought that Hct was only important for PV patients, then that it mattered for all MPN patients, and now I’m not sure. My consultant wasn’t concerned it’s 0.465, but because she was talking to me as if I were a PV, rather than ET patient, it threw me completely and I lost a little faith in her. She said the LDH wasn’t a concern and is only mildly above the normal reference point, but in this respect I’m puzzled as to why the labs differ so much and why some say 240 or 250 is the upper limit, in which case mine are really nothing to worry about.
Certainly 23 weeks on Pegasys isn’t very long, as you say, and as I’m on 45mcg a week with no AEs, we have plenty of room to go higher, if necessary. Best of all, she’s putting my health before her ego - to paraphrase Hunter - by referring me to Prof H. A second opinion and a review of all my results can only be a good thing. But the platelets, Hb and WBC are all within normal limits, and I’m asymptomatic, so I guess I should stay positive…
Absolutely! Asymptotic and CHR is certainly worth a twirl/Jaffa cake!
Your haematologist has worked in your best interest by referring you to Guys. You may not necessarily have to have a bmb either, I didn’t, although I did have allele burden, EPO and LDH test requests, still awaiting results on those.
Thank goodness for prof Claire Harrison! I’m sure she will get you sorted. Let us know how you get on. I asked a question to my nurse about something on the routine phone call to discuss results and he had to look up what condition I had. It is disconcerting but the ‘on the ball’ ones are there to sort us out thank goodness
Alas too many patients and not enough time sometimes leads to mistakes. Doctors are human and sometimes do make errors. Fortunately, you knew enough to question the issue about HCT, which at 46.5% would not be a concern for a male with ET.
Likewise a mild/borderline read on LDH. Could be nothing more than a response to strenuous exercise, some kind of mild tissue damage, or ongoing systemic inflammation. Mild elevations are not uncommon with MPNs. Some MPN docs do track it, but not all do.
Glad to hear that your doc referred you to Dr. Harrison/Guys. It can work quite well to have a good local hematologist an a MPN Specialist on your care team. Definitely leads to higher quality care.
Very reassuring - thanks! I was so puzzled when she mentioned Hct last time and just thought she was being extra cautious, but now I’m wondering whether she’d been treating me as per the ‘PV protocol’ before? Quite possibly, but everything I’ve scoured suggests that figure is okay, esp with Hb at 152, which is very close to where it was two months ago. She wanted my platelets <400 due to thrombosis history and we’ve achieved that without inducing anemia or neutropenia, so I have to hold on to that.
You could well be right about not attributing the LDH to ET: my left elbow has been a bit inflamed for a few weeks - my GP felt it and wasn’t concerned, saying it’s most likely a strain from lifting something and that it might take a while to fully heal… 🤗
My LDH started very high at Dx, >400. I think long covid may have been one factor. On Hu and now Bes it's down to 250. My provider's ref is 256. One sample here:
<<Normal value range is 105 to 333 international units per liter (IU/L).>>
is very high, another I saw has 280 max. So it seems all over the place. My Dr did the recent test bec I asked, but both he (MPN specialist) and my cardio doc this week said LDH is not medically important, at least for me.
Regarding your HCT and ET vs PV Dx, I have a vague mix of the two, BMB points to ET, some other bloods to PV and we are watching HCT. You should be able to get more clear answers at the top source you're about to see. At least hearing from Guy's that your HCT is fine will be very comforting.
Thanks - the LDH reference points DO seem to vary hugely. None of the specialists have had any doubt that I’m ET. I questioned them about masked PV, too, but they were adamant. As you say, I couldn’t hope for more than to see Prof H at Guy’s. 🤗
If I were in your shoes I might consider increasing the weekly dose of Pegasys modestly to 65-70 mcg for the next 6 months to see if the platelets come down to around 300 and the LDH down to around 150-200. If they did, then I'd try going back to 45 mcg per week to see if those levels can still be maintained. Experimenting with dose is the only way to find out what minimal weekly amount of Pegasys can keep the levels in an ideal range.
I’m certainly happy to try that in the absence of any AEs from the PEG to date. It’ll have to wait until my next scheduled appointment, though, in 10 weeks’ time. I did press my haem on the increase to 65mcg when she realised she’d made a mistake and she was happy to leave me on 45mcg for the moment. I think the referral to Guy’s will be the best course of action. If I’m lucky, I’ll hear from them before the Aug appointment!
Hi yes somthing similar happend to me in so far as my first diagnosis was ET now 2 years on after self referred to Clare Harrison it appears l have PV. I take Hydroxy with occasional phlebotomy,l also have other issues,but l have to say this disease leads me a merry dance. Good luck Adiewon
First and most important your Hct is too high , with MPN it should be under 45 for men and 43 for women, I don’t know if the NHS agrees with the US docs on the 43 for women. One to ask Clair Harrison. With too high Hct you are at increased thrombotic risk, I don’t want to worry you but it’s a fact. It’s great they are referring you to Guys, I suspect they will do a BMB to check which MPN you have as it’s not clear. I wouldn’t worry much about slightly increased LDH, most with MPN have that, for some on Peg can have a reduction in LDH. If it were me I would have the suggested venisection or two asap to reduce the Hct as above and then relax , the folk at Guys will take good care of you.
Interesting on the difference in LDH reference ranges. Our local range is 233 - 440. Prior to starting cytoreductive therapy (first HU and then Peg), I had a couple of high readings. Since being on the drugs (especially Peg) all readings have been in reference range (my MPN tests mine with every blood draw. He states it is a non-specific test/indicator but good to have as to how the body is handling inflammation).
440 upper range is really high. The huge variations in reference levels this thread support what some of our docs are saying, that LDH is not too medically signif.
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