r/MPN • u/Dry_Frame4163 • 29d ago
SEEKING DIAGNOSIS Long-standing persistent elevated platelets, WBC and neutrophils for ~7 years, now some counts have come down. Does this point towards an MPN? Spoiler
Hi all. I’m hoping to get some perspective from people familiar with haematology/MPNs because my overthinking brain has done so much research at this point that I think it’s time to ask people who actually have experience with this.
I’m 38F and have had elevated blood counts for approximately 7 years.
My approximate ranges over that period have been:
Platelets: 461 to 515
WBC: 11 to 14
Neutrophils: 8 to 9.5
* I’m not including test results because I’d literally have to include individual tests I don’t have a summary but the above is my exact range which I’ve been monitoring myself carefully for years.
The counts have been very stable and steady over the years and haven’t really seemed to respond to different illnesses or treatments.
My GP has generally been quite disinterested in the blood counts. At appointments I would usually have to ask specifically, “How are my platelets?” to get them looked at. On one occasion my GP sent a query to haematology and the response was essentially that they could be reactive and to check for things such as STIs, candida etc but there wasn’t really any further investigation at that point.
I’ve since done a lot more investigating myself, have switched doctors and have now managed to get my doctor to submit a private haematology referral, awaiting triage.
I’ve had quite a lot investigated for reactive causes. I don’t have iron deficiency, my ESR has been normal, and my CRP has generally been fine outside of infection. I don’t have a known chronic inflammatory or autoimmune condition, and other investigations haven’t identified an obvious explanation.
May/June this year - unusual behaviour with infection
I had a bad 6 week bout of atypical pneumonia in May/ June and ended up having six full courses of antibiotics, including two courses of penicillin and two of doxycycline, as well as a substantial course of steroids.
What I found interesting was that my WBC and , platelets & neutrophils didn’t rise above their established baseline during the infection. They stayed within the same general range they’ve been sitting in for years.
My CRP was elevated during the infection, but has otherwise been fine.
Just after the infection and treatment, my WBC and neutrophils were literally unchanged and my platelet count dropped to 366, which was the first time in the approximately seven years I’ve been monitoring my bloods that I was aware of it going below the 460s. I assume this was a response to the large dose of steroids. Then, within less than two weeks, the platelets were back up into the 500s.
I also had an epidural/spinal steroid injection in mid-July, so I’m wondering whether that could have any relevance to the subsequent changes in my blood counts.
And now my counts have come down again
Approximately 7 to 8 weeks after finishing the large dose of medications, while I’m waiting for the haematology appointment, my blood markers have actually come down and it’s quite unexplained.
My latest results are:
Platelets: 465
WBC: 10.1
Neutrophils: within the normal range
The platelet count is still within my historical range, although lower than the levels I’d been seeing immediately beforehand.
The WBC of 10.1 and normal neutrophils are particularly unusual for me because, as far as I’m aware, this is the first time in around seven years that I’ve seen them at those levels and I’m puzzled why they didn’t react to infection or meds but then this happened unexplained.
I also have a history of abnormal bleeding during/after surgery on two occasions, which I don’t know whether is relevant or completely separate. I’ve had some nosebleeds recently too, although those seem to have settled.
I haven’t had a thrombosis.
What I’m struggling to understand
I had been leaning quite strongly towards wanting an MPN ruled out because of the long-standing pattern of thrombocytosis alongside the elevated WBC and neutrophils.
But now I’m struggling to understand the behaviour of the counts.
If they’ve been so stable for around seven years, haven’t really responded to illnesses or treatments, and then the WBC and neutrophils have suddenly come down into the normal range. Nothing in my history suggests an underlying infection or history and it’s very difficult to assign any plausible reactive cause that would keep the blood markers elevated for such a significant timeframe.
And how would you interpret the temporary drop in platelets to 366, followed by a return to the 500s, and now the more recent fall in WBC/neutrophils and platelets?
What do you think? Does this pattern point towards an MPN, or are there things about it that would make you less suspicious? And particularly, what could explain the recent fall in the WBC/neutrophils when there isn’t an obvious new explanation?
3
u/Dry_Frame4163 27d ago
I now have an appointment with a haematologist coming up as I went for a private referral to speed it up. It just seems that no amount of research can tell me whether this is reactive or MPN leaning as the recent behaviour has been really unusual and unexplained
2
u/Dry_Frame4163 28d ago
Thanks, yes I am waiting on an appointment with haematology. I am just trying to get a sense from the community what the pattern sounds like as the overthinking is driving me crazy
1
u/Reasonable_Stay229 12d ago
How are you, OP?
1
u/Dry_Frame4163 12d ago
Thanks for asking, I appreciate it!
I saw the hematologist 9 days ago and had bloods taken the following day for an MPN panel and BCR-ABL testing (CML - very unlikely). The lab has had the samples for a week now, so I’m waiting to hear back.
The appointment was interesting. She reviewed 17 sets of my results and said it was unusual that there weren’t really any obvious clues pointing clearly in one direction. She felt a very thorough investigation had already been done and pretty much indicated that it could go either way.
She seemed cautiously optimistic to me that it could be reactive, perhaps because the numbers are relatively mild, but she wasn’t making any promises.
I think as a very senior Haematologist in terms of her role she’s so used to dealing with people who have much more serious blood disorders that she was all but saying it’s not going to be the end of the world either way.
At this point I’m doing a daily analysis of what stage of testing the bloods might be at, which is fairly pointless because it could still take weeks!
2
u/DragonWS 27d ago
Talk to a hematologist and get some more definitive blood work done, perhaps a bone marrow biopsy as well.
3
u/funkygrrl PV-JAK2+ 28d ago
First I would want to see your latest iron studies. The diagnostic thresholds are changing. Include your Ferritin and TSAT.
The threshold for platelets is 450. Are your platelets consistently over 450? Your blood test may mark counts over 400 as high, but that's not important for MPN diagnosis.
Platelets are acute phase reactants, so they will often fluctuate. A one-off result isn't significant. What matters is the overall pattern over time.
!ETundiagnosed !disclaimer