I have recently been told by my GP on a telephone consultation that I have ET. No explanation of what it is other then ‘It’s a platelet thing and just making you aware as it might raise its head in the future when you have routine blood tests done. ‘
the GP spoke to Haematology who said they are not concerned but asked me to take a course of iron tablets and have blood checked again. I have done and not heard anything back from the GP. I’ve called the surgery to be told that my guilt blood count is improving and they are still awaiting JAK2 results (it been 3 weeks since last blood test)
What should happen next? What should I expect? My GP is lovely but I’m not very confident as she hasn’t even explained to me what ET is.
Many thanks
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BarnyKat
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hi it might be they are doing a wait and see scenario I got diagnosed in august so new to this I had constant high cell counts and platelets had a bone marrow biopsy to confirm triple negative essential thrombycemia I’m on hydroxycarbamide daily and blood thinners good luck on your journey.
As a post script to my earlier response, I did have private blood tests in the first instance but this proved to be very pricey, although thoroughly comprehensive.
Firstly -don’t panic! Most G.P’s aren’t familiar with the details of ET so won’t know how to advise or explain in too much detail. ( General Practitioner = knowledge about a lot of things in general but, not a lot about most conditions in detail- you need a specialist for that!)
My experience is… Unless your platelet levels are sky high or very low and you are 60+, they will ‘watch and wait’ - fairly regular blood tests and maybe a bone marrow biopsy will be suggested to get a clearer picture. You will probably be asked to take a small dose Aspirin daily- it helps to stop the platelets being ‘ sticky’ and forming a clot. Read up as much as you can, MPN Voice has a wealth of detailed and easily understood information along with HealthUnlocked of course!
In my case, I have Triple Negative Essential Thrombocythemia, diagnosed about 18 months ago. It is a fairly slow moving condition- I’ve been told that I’m “more likely to die WITH IT, than FROM IT!!!” Charming but, does put it in perspective I suppose 😳. And I don’t experience any symptoms except for tiredness ( I have other conditions too, so it could be down to them realistically)
There are others on this site who have a very different and much more scary experience of their type of ET- fortunately mine, so far is pretty undramatic and I hope yours will be too. You will normally be allocated a cancer specialist nurse, I’ve found mine to be a really important portal to getting access to my haematologist.
ET is a fairly “new” condition so, there is a lot for us all to learn about it. Good luck and let us know how you are getting on. Best wishes x
I was diagnosed with ET about 30 years ago. It progressed to PV about 9 years ago. I have lived a great life and at age 67 continue to do so. There are issues with MPN that need to be managed. It is often the secondary symptoms that are more bothersome. One thing to know is that at the core. MPNs are inflammatory disorders. Learning to manage this is very important.
While the MPNs are a form of blood cancer, these are chronic conditions not acute cancers. The majority of people with ET will live a normal lifespan. Proper management of ET is very important. The MPNs are rare disorders. Most physicians, including hematologists, have little experience or expertise in treating MPNs. You need to consult with a MPN Specialist to receive optimal MPN care. Here is a lst. mpnforum.com/list-hem./
When managing a condition like ET, you must become your own best advocate. Educated and assertive patients receive higher quality care. Passive patients do not. It is important to keep track of your MPN status and have access to all of your labs in a timely fashion. There should be a patient portal where you can access your labs. If not, you will have to request hard copies. your JAK2 test should already be available. these typically take about a week to come back from my lab. many other labs will be back in a day or two.
The good news is that you will have a lo of time and opportunities to learn about ET and how to manage it. There are excellent resources available, starting with the MPN voice website and the patient forums they host. Here are some links you may find helpful.
ET is a highly complex condition. It varies in its symptoms and how severely the different elements of it attack people. There are many extremely knowledgeable and friendly people here at healthunlocked. I am sure they will be able to give much better explanations and provide you with more comprehensive advice than I ever could. Best wishes and good luck!
"What it is" causes defects in our marrow. In recent times it's called a cancer, since it broadly results from a mutation in our bone marrow. This is good for us because the C word has attracted lots of funding and research compared to when it "just" called a disorder. (the old word is MPD, Myeloproliferative Disorder)
If your Dr suspects ET, they should be checking for more than Jak2. There is CALR and MPL and none at all (triple negative) that can be found with ET, as noted in the thread. So a negative Jak2 result is not the full picture with ET, or any other MPN. So what should happen next is you should seek the right specialist that would discuss these sort of details with you. An MPN specialist is best, but you should at least try to have more direct consultation with a skilled hematologist.
My results took over 3 weeks - the wait was the worst part.
I took advice from this site in the sense of ‘you’re your own best advocate’ & asked my GP surgery for a copy of all my blood results from the past few years.
On the print out it shows what the ‘normal’ levels are, so you can get an idea of what’s ‘off’.
This seeming British manner of saying little or nothing to patients if they aren’t sure is understandable but unhelpful as most will google JAK2 and by the time the results come back in your mind you’ve died 5 times over.
This site has been an absolute sanity saver!
I was diagnosed March 22 (I’m 51) & while my blood still isn’t quite right, day to day I’m pretty much ok & know the fatigue/itching isn’t going to kill me & there are ways to manage this condition.
The diagnosis part with the wait & the not knowing has definitely been the worst part so far.
You’ve had lots of good advice as to ‘what is ET’ but I’m slightly mystified as to why your GP has told you to take a course of iron tablets. This seems odd advice. The first line standard intervention would be to put you on a daily low dose aspirin to thin your blood and prevent thrombosis. Iron intake and MPNs is complex.
I would also push for referral to an MPN specialist. The key to living well (and long) with an MPN is regular monitoring and the care of someone who really understands the disease and is up with the latest treatments - particularly as the understanding, management and treatment of MPNs is moving at an exponential pace.
For reliable, up to date patient information and support check out the MPNVoice website (managed by the team at Guy’s).
Hi, I would certainly recommend checking out the links suggested by hunter for a comprehensive explanation of ET. I think for the GP to just describe ET as a "platelet thing" is a gross over-simplification. Like Ebot I am puzzled as to why you've been put on iron tablets - are you anaemic? Although I have PV I thought the general view is to avoid iron supplements like the plague as it can mess up the blood counts - I'm forbidden to take iron supplements unless specifically prescribed by my hospital. In fact the way they manage my condition is to deliberately keep me anaemic. I think it's also important you know what your blood counts are so like hunter I suggest you ask for them and keep a record of future blood counts so you can track the data.
Be aware that a lot of GPs know very little about MPNs so it's usually best to be liaising with the haematology team at the hospital rather than the GP. Might be an idea to see if you can have a discussion with someone in the haematology team who knows something about MPNs, if there is one.
It's a good idea to sign up for information and updates from the MPN Voice website as you'll then hear about forthcoming webinars where you can learn a lot more and usually have a chance to participate in ET-specific discussions. This is the UK website for us but there are similar in the USA (see hunter's links) which you can also sign up to and access their webinars and videos.
Hello! I have ET diagnosed about 9 months ago. I eventually had a bone marrow biopsy on the NHS. I see a consultant haematologist about every 12 to 14 weeks ( formerly every 4 weeks) at local NHS hospital. Before every appointment I have NHS hospital blood test, a few days prior to appointment .The hospital blood test results are available within 24 hours and a copy is available for me to view on patient portal. My GP was a huge disappointment which is why I first paid privately to see a consultant haematologist specialist in this rare blood disorder known generally as MPN. Well worth it for outstanding advice and kindly efficiency and cost about £250 (London price). This haematologist just nailed the condition. Very knowledgeable. Now treated by NHS at hospital visits and I don’t see my GP about this condition.
I had 5 blood tests at GP level before I convinced them to send me to hospital Haemotology. None at surgery level had knowledge of ET & without pushing my platelets would be even higher . Hospital Haemotology took in depth tests & bloods back in a week from laboratory confirmed ET. My GP surgery have not seen me since diagnosis as really not interested now I am under Haemotology . I get monthly blood checks. Also contacted MPN expert Professor Harrison who oversees treatment. I was told definitely no iron tablets . Effects platelets. Insist on Haemotology appointment. 👍
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