I am new too the forum and this is my first post. I have been reading a lot of posts and you are all very knowledgeable. You might kindly have some advice.
I have elevated/flucating platelets since 2009, I have had many different symptoms but they alway went away, however I felt a change in Jan 2020 where I present with extreme fatigue.
I got C19 last April and fatigue was very bad and then I got a rapid heat beat and seen a cardiologist and he put me on medication for the fast heart rate and he referred me on to a Rheumatology and from there I was referred back to a haematology clinic for genetic testing.
I was unwell in 2013 and was referred to heamotologist but genetic tests were negative.
I have mild symptoms but extremely very tired and my blood only show elevated platelets and now low b12, I also have mild pain in my tummy (burning on both side) I also have burning toes and my neck glands are sore and breathless when walking.
I ended up in hospital in 2013 and had a cannula in my left arm and hot a clot from that and my circulations is bad a per my cardiologist ( he thinks connective tissue disease) so I'm not sure yet of a diagnosis.
I have to wait 2 more weeks for genetic results.
Any advice would be appreciated as I am a little worried, more so because there is lung cancer in my family.
Thank you
D
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De12
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This is such a great forum. You will find wonderful people here with lots of knowledge on ET and other MPNs.
You mentioned genetic tests and that they came back negative in 2013 and that you’ve been retested now. Do you know what you were tested for in 2013? There were 2 new mutations discovered in 2013 (CALR and MPL) that cause ET that may not have been included in your test back then. My guess is that you may have only been tested for JAK2 at that point. Common practice now is to test for all 3.
You mentioned your platelets have been up since 2009. How high have they been over the years? I am not a physician, but I would assume that since your platelets have been up for so long, you do not need to be worried about lung cancer causing this since 13 years would have been a long time to have that without it presenting itself in other ways.
I myself have been in the diagnosis process for ET for 2 months now. Platelets borderline high since 2011. All my genetic tests are negative, so I’m being evaluated as a possible “triple- negative” (you can have ET or other MPNs with no detectable mutation - about 15% of ET patients are triple-negative).
This makes sense. JAK2 was discovered in 2005. CALR and MPL were discovered in 2013. So my guess is that you were only tested for JAK2 at that time. You are probably being tested for all 3 now.
hello De12, completely understand that you are worried. As you had COVID-19 last year, has it been discussed with you by your GP or other doctors the possibility of long COVID, also called post COVID -19 syndrome, as many of the symptoms you are experiencing are listed as the long-term effects of COVID that people are experiencing
Yes I work in the Health Service( non clinical) and I am aware of C19 long symptoms so maybe it could be c19 that but platelets elevated to long now.
My symptoms are mild but symptom never stop and has changed since Jan 2020.
I may not get answers this time either but I think I need help with my symptoms as the Cardiologist would like me to have treatment, the heamotologist did tell me in 2013 that it may be ET.
Heamotologist said about 4 weeks for tests so hopefully I will hear something soon.
When I was first diagnosed,my vit B12 was also low, not below range but very low normal. I took B12 and that made a huge, rapid difference to my tiredness, brain fog, memory issues- to name just a few. I now take B12 regularly and have no symptoms at all despite always having quite high platelets.
I do hope your doctors are looking at B12 for you? That might be an issue for you. There are lots of good books on B12, I found Sally Pacholoks the best one and learned so much.
I suspect the two issues are unrelated. I have taken B12 for 5 years now and it hasn’t changed my platelet counts. In the beginning I hoped B12 would have an effect on my platelets but no such luck. But I do feel tons better 😁
Welcome to the forum. Glad you found your way here.
It sounds like you may have an array of issues to deal with, including a possible MPN. Some of what you describe is consistent with a MPN including the thrombocytosis, fatigue and burning toes. However, thrombocytosis can be secondary and the other symptoms you mention can occur for other reasons. It will take some time to sort this out, but it sounds like the docs are taking the right first steps to sort it out. You should know shortly whether you have one of the driver mutations for a MPN (JAK2v617f, JAK2 exon 12, CALR, MPL). Once you have the answer to that, you will know what the next steps are.
One thing to understand about MPNs is how rare they are. Most doctors know little to nothing about MPNs. I recently had to explain to my orthopedist what Polycythemia Vera is and what it does to the body. Most hematologists rarely deal with MPNs in their practice and do not have the KSAs to provide optimal treatment. If you do have a MPN, it is very important to have a MPN Specialist on your care team. Here is a list of docs with that expertise. mpnforum.com/list-hem./
Hope you get answers soon. Do please let us know what you find out.
Many thanks for your reply, I do hope I get answers soon.
I've been feeling very unwell with little energy and I know this could be the low b12 but I have unusual symptoms for along time but didn't go to my GP as symptoms were mild. But my skin colour is not good especially my legs and my breathlessness is more prominent lately.
In 2013 I did get a clot in my left arm but that was from the cannula but I was put on warfrain and taken off it after 3 months and had nothing since other than the symptoms changes since Jan 2020.
Maybe it's an connective tissues disease as genetic test were clear in 2013.
I thank you for this group and I will let you know when I get any result.
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