Hello there @Key.Luke88, welcome to the forum, but I’m sorry you had reason to seek it out. Sounds like you’ve been experiencing a frustrating and worrying time awaiting test results and getting checked fully by a haematologist, the title of your post says it all!
Unfortunately I can empathise with a lot of what you shared as I went through similar rounds of testing last year and after some agonising waits was diagnosed with Polycythaemia vera (PV). I should add I’m not a doctor but have keenly taken note during my diagnosis and since from my haematologists, survivors on this incredible forum, and at a blood cancer conference earlier this year.
While what you’ve read about Polycythaemia vera (PV) is totally right, in that Polycythaemia vera (PV) often has symptoms of itchy skin, weird sensations, fatigue and so on, you might be slightly relieved to know these can also be symptoms of many many other conditions that aren’t blood cancer. I’d suggest not reading about Polycythaemia vera (PV) online unless it’s via an official blood cancer organisation like this one as there is so much inaccurate information out there when searching Dr Google.
In my case, I was fortunate not to have any of these typical symptoms apart from developing fatigue which was grim initially. I really feel for you, it sounds irritating to experience all those skin sensations.
The testing you’re undergoing will check on a genetic and cellular level whether you have the main indications of Polycythaemia vera (PV) or other Myeloproliferative neoplasms (MPN). Around 97 % of us with Myeloproliferative neoplasms (MPN) like Polycythaemia vera (PV) and Essential thrombocythemia (ET) have the JAK2 gene mutation, but you may be relieved to know that people can have this gene mutation without having blood cancer, hence the many tests to make sure.
My JAK2 gene mutation was caught in a blood test and then I had to have a bone marrow biopsy and aspiration to check my blood cells at their source, and unfortunately this is where my Polycythaemia vera (PV) diagnosis came from.
So I’d say, hold out hope that those symptoms you’ve been dealing with aren’t necessarily an Myeloproliferative neoplasms (MPN). There are dozens of gene mutations other than JAK2 that can also indicate an Myeloproliferative neoplasms (MPN), but equally can just be that, a gene mutation laying dormant.
It’s excellent that you’re getting tested and whatever findings you receive will help you guide your health going forwards, but for now the waiting continues.
In the meantime, something many Myeloproliferative neoplasms (MPN) survivors say helps reduce itchy skin after showering/bathing is to use cooler water. Maybe use milder shower gel and detergents for now. Try to keep as hydrated as possible as dry skin can exacerbate the itchiness and sensitivity. Make sure to use high SPF sun lotion, especially during the summer, and cover up your skin.
As for you being asked about taking a supplement, it could be that they’re checking whether you add iron into your diet. Perhaps for now don’t take additional iron as it can encourage blood cell production which folks with Myeloproliferative neoplasms (MPN) don’t want. A major side effect of Myeloproliferative neoplasms (MPN) is overproduction of blood cells which treatments help slow down and reduce to slow risks of blood clotting.
Try to keep note of your symptoms so you can share them with your GP and haematologist and so you might notice patterns in what helps and what makes you feel worse. Fatigue is unfortunately a big side effect of blood disorders so try to rest when you can and resume your activities later.
Regarding the wait for testing, I think in your situation it would be understandable to try chivvying your GP along with your referral to a haematologist. Waiting for months for JAK2 test results seems to be common, unfortunately, as they typically get sent off to university laboratories or similar. My own dad in south Wales waited months for his JAK2 result so perhaps get ready to be pleasantly assertive as dear @Erica recommends and check on results as often as you can.
I hope this helps for now @Key.Luke88. Sorry I went on a bit! Keep us posted about any progress with tests and results and maybe look around the forum and Blood Cancer UK site for research about living with Myeloproliferative neoplasms (MPN) just in case that’s what you get diagnosed with.
In the meantime, try to give yourself a break and don’t let worry take over. Find healthy distractions, preferably whatever exercise you enjoy (stretchy ones like yoga and Pilates are great). If I may be so bold, living with Polycythaemia vera (PV) doesn’t have to stop your life in its tracks. In fact, Myeloproliferative neoplasms (MPN) can be lived with into normal old age with minimal adjustments, hard as that is to hold in mind.
Thinking of you. Do let us know how it goes!
