Firstly, thank you to everyone for this forum, I have been quietly reading it for the last few days and have found it very helpful.
For me the road that lead eventually to an ET diagnosis started with a visit to my GP
towards the end of 2016, because I was suffering an odd collection of symptoms that were beginning to worry me and were having a significant impact on my daily life and work. For the record, here are the main ones:
1) I was having increasingly frequent visual migraines, always affecting my left eye. These would commence with small, bright flickering triangles of light and a tiny blind spot. The flickering triangles would form a half circular shape that got larger and larger until most of my left eye's vision would be affected. Then they would rapidly fade away after about 30 minutes. I had 3 episodes of this the week I saw my GP.
2) I had frequent attacks of vertigo that would come on when I was walking, particularly down hill on a pavement beside a road. I had to concentrate very hard indeed not to loose my balance.
3) I had serious fatigue.
4) I was having bad leg pains, particularly when sitting down, and suspected that I might have a blood clot.
5) I had just started having headaches that were different from any that I had previously. These were centralised and felt like brain was being squeezed. They were accompanied by light sensitivity and some nausea.
My GP found that my blood pressure was fairly high. She ordered a full blood count, and wisely said that we should wait for the results before speculating about the cause. She thought that my leg pains were most likely due to an old lower back injury that I had.
Because I was still a little worried about circulation and a possible blood clot I self medicated for about 2 weeks with daily low dose aspirin. My legs improved, my visual migraines went away, I stopped having giddy spells, but I did not really give credit the aspirin for doing this... so I eventually stopped taking them!
The results came back with a note from the lab to test JAK2 and MPL and that my platelets were above 600. These tests were done, but results took a long time to come through, because the labs don't do them often here, and I think Christmas got in the way. Both JAK2 and MPL results were negative.
I had another blood count done in the New Year, and this showed the platelets over 700. I was sent to a haematologist, who showed me my blood results going back for the last 2 years or so, and these indicated a progressive climb from 375 to the current level. She took some medical history and details of risk factors and so on, and arranged a Bone Marrow Biopsy.
A few weeks after the Biopsy I saw the Haematologist again, who confirmed that I have ET. She assured me that many people are without symptoms of ET until their platelet count is over 1000, and that she would start me on daily low dose aspirin.
Interestingly, the visual migraines had returned by the time I saw her, and occasional pressure headaches, but these went away again when I went back on daily aspirin.
In just under 2 years time, when I reach 60, or if my platelets hit 1500, she will put me on Hydroxyurea. I am having monthly blood tests to see what the platelets are up to. We recently climbed through the 800 mark.
So far, the medical people that have dealt with me have all been very thoughtful and kind, and have done their best to reassure me, and I feel very fortunate to have a GP and Haematologist that I like very much.
I went through rather a lonely patch at the start of all this, as I did not feel able to tell friends or family, especially as the diagnosis took many weeks to come through so nothing really "concrete" was known. I have now confided in my wife and a few very close friends, but have not yet let family know.
You might be able to help me with this....
The assurance that many people are without symptoms of ET until their platelet count is above 1000 or more worries me, as my symptoms were sufficiently troubling to take me to the GP when my platelet count was only 600 or so. Is it fairly common for symptoms of ET to start this early? Or should I be looking to see if there is some other cause for them?
Fatigue is a real nuisance. I often feel too tired to drive anywhere, but am self employed and work from home so it is fairly easy to conceal how bad things really are. I found that a lot of the "brain fog" that I had, did recede when I started taking daily aspirin, but I am still very tired most of the time. Is this level of fatigue common for people with ET, who have platelets well below the 1000 mark, and who are only on aspirin? I notice that many of you who are on platelet reducing drugs are very severely affected by fatigue.
Sorry about the lengthy post! Thank you for reading.
Written by
stillkicking
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Hello and welcome to the forum - you will find much support and information here and so good to find that when first diagnosed. Certainly all the things you describe are very much ET /MPN symptoms ( I have ET 10 years diagnosed and on aspirin and Hydrea). Although levels are looked at by consultants for certain times to be treated etc etc ET will vary in all of us and often symptoms do kick in on the lower counts. ET also has symptoms in itself so even when treated and under control by way of counts (as I am) you get symptoms that are part of the disease and yes fatigue is one of the bigger ones - but we all over time learn to adjust a little and deal with it, knowing the limits you can work within - so you will find this in due course just hang in there. Certainly the eye and headache symptoms will ease on treatment - although I was diagnosed in my mid 40s I remember having just as you described visual disturbances right back in my mid 30s just now and then and I put down to migraines. So these things can happen for many years before they really become a problem and you tend to be diagnosed. Fortunately now more and more knowledge is out there reMPNs and I think more are being diagnosed quickly. It's good you are having your bloods done each month - sounds like your consultant is keeping a good eye on you and know that when you get to the time of treatment there will be much help for you on here. All the best.
I had PV (now MF) and had exactly the triangular visual disturbance you describe, linked to high HCT (so I had too many reds rather than platelets) also the headaches. So I would think quite likely these symptoms are linked to your ET. Good that your docs are sympathetic: worth checking with them?
No one seems to know why we get fatigue. It is such a wide spread problem with all types of MPN and a variety of drugs that my guess is that some of it at least is linked to the condition itself.
I have often wondered why MPNs cause fatigue. For about three years before I was diagnosed with ET I would visit my doctor to say how tired I felt and my energy levels were always low.
He kept fobbing me off by saying it could be post-viral fatigue, just live with it.
Eventually he told me it was depression which any of my family and friends would tell you was ridiculous as I am a very happy and well balanced person.
It was only by chance that a blood test for an unscheduled operation revealed a platelet count of just under 1000. The hospital advised seeing a GP at my local surgery who was worse than useless.
She told me to find a haematologist myself. There was great urgency because we had planned a world trip to celebrate retirement. I checked three hospitals and could not find a specialist and it was only by a lucky chance that I managed to get a private appointment with a consultant who was an MPN expert.
Within 24 hours I had a blood test which showed I was JAK 2 positive and ET was confirmed. I was started on Hydroxy straight away and over about ten months it brought my platelet count down to around 200.
My own thought on fatigue is that MPNs change the shape of the blood cells so that when it goes into the lungs it is not efficient enough to pick up sufficient oxygen to keep the body functioning normally - hence the fatigue.
I am now diagnosed with post-ET MF and have been taking Ruxolitnib for a year which is keeping my blood counts stable and giving a reasonable lifestyle compared to a few years ago.
I remain hopeful that with all the research going on we will see a breakthrough in treatment over the next few years to stop fatigue being such an issue in our lives.
I also have ET (Jak2+) diagnosed around a year ago. At this time, my platelets were stable on three separate occasions at around 500 - but because of my age I was put on hydroxyurea which has since brought my platelet down to an acceptable level. My only symptom was and still is fatigue. Take today for instance, I have cooked Easter Sunday lunch for visiting family and it has fatigued me to the extent that I feel like I've run a marathon. I have napped on the sofa for most of the afternoon.
I too have for many years experienced the 'scintillating scotoma' that you describe but the episodes were very few and far between...maybe once or twice a year at the most. I am still unsure in my case if this is related to my ET, as my husband and a close friend also experience this. If it is related to my ET something 'sinister' must have been going on at least twelve years prior to my diagnosis, as that's around the time I first experienced this, and that is scary!
From what I understand so far, and I must stress this is only my opinion; ET and its related symptoms is not just about the quantity of your platelets but also about their quality. Also, any additional health problems may exacerbate any symptoms.
As I have often said, it is a very complex 'disorder' that I personally am still having difficulty with comprehending. I have learned so much from this site and I'm sure it will help you also.
I'm a 69 year old male, non-smoker, former university level swimmer, slim build, regular workouts (3-4x/wk), history of excellent health, but I just got a diagnosis of ET, and was positive on the JAK2 test, and possess the V617F.
Doctor put me on HY.
Question: does the fatigue go away? I am productive in the AM, then feel like crashing by 2 PM, then am pretty worthless after 3. This has been going on for some time.
Does anyone have a solution for the fatigue? Does exercise work? Naps? What works?
Really appreciate this site and will keep you folks up to date.
Note: I did find a solution to the painful toes/feet. Mine was pretty bad. Got on the internet and found a product,"NerveRenew" capsules, B1 and B12 with R-Alpha Lipoic acid. Found it on a site for peripheral neuropathy. Site suggests taking the capsules 2x day and eliminate alcohol from your diet. Result? no pain.... all gone...nada.
Thank you to all of you for your thoughts and experiences, it is good of you to write, and I appreciate your support very much.
We certainly do seem to share a similar set of symptoms, and it does seem that they can occur with platelet levels that are quite low. Peterwi's comment about platelets having to be below 400 in his case for symptoms to go away, was very interesting. And I note that mhos61 was feeling fatigue with platelets at around 500.
I understand that the "normal" count for platelets is between 150 - 400. Therefore, my intuition tells me that, If a person usually had platelets at, say, 200... and got ET, then, by the time their level was 400, half of their platelets would be abnormal, but their tests would be considered normal!
I wonder if we all start from slightly different "normal" points, and this may help explain why one person has symptoms at 600, and another starts them at 800?
What mhos61 said about it being a question of "quality" as well as "quantity" makes a lot of sense to me, and could well explain this variation too.
It is interesting that fatigue is such a factor with MPNs. It would be wonderful if the cause of this is found... it may even help people with conditions such as Chronic Fatigue (ME).
I'll be off for my next monthly blood test tomorrow, and will be able to have a bit more idea of how rapidly this thing is progressing.
Hi there I'm a 67 year old female with ET + Jak 2 positive and was diagnosed 18 months ago, I had all the pre diagnosis symptoms you mention plus more. I think I was unwell for 5-6 years before I finally felt so unwell a full blood count was requested, my platelet count was 950. It had been about 600 a few years previous but I wasn't treated which the consultant said was wrong, I should have been given asprin. I've been told up to 400 is 'normal' and if you are under 60 will most probably be treated with asprin until your 60th birthday, if you are close to it that is. I was put on Hydroxy immediately plus asprin and most of the time feel ok and my platelet count hovers around upper 300s. The two things that make a big difference to me are exercise and keeping my fluids up, 3 litres a day at least is recommended, I find that hard. I feel fine one day and can do loads and the next I'm exhausted, that's how it is. I'm no expert but I would say 800 is fairly high and certainly 1500, they may be trying to keep you on asprin only for as long as they can and to keep you off hydroxy for as long as they can but if you are feeling unwell you may benefit from another drug. I suppose you have to feel happy with your consultants advice or get a second opinion but that seems to change, according to this site, with whoever you see. The very best of luck, it's hard to explain the level of exhaustion, even to ones spouse, it's all consuming at times and you just have to listen to your body and rest when you feel like it.
I think I may have read that symptoms have no relationship to platelet volume. I have been on aspirin and HU for 18 mos. I still have headaches almost daily and will think my platelets must be rising but no remain fairly stable. I had CT scan on Friday waitingto hear if it shows anything.
Hello Stillkicking, welcome to our forum, I can see you have had some good advice from the lovely people on this forum and as you will have gathered, there is no 'one size fits all' with regards to the symptoms and treatment of ET, or the other MPNs. We are all hoping for the answer to why we get so fatigued and how to cope with it, it may sound daft but exercise does really help, even if you just go out for a walk, just moving around can help with the fatigue, you don't have to go mad and go to the gym, just something to get you moving. And also stay well hydrated, this also will help. I would suggest that you read as much as you can on our website mpnvoice.org.uk, there are lots of videos on there of patients talking about their MPNs and how they cope with the symptoms, and also videos of leading haematologists. Best wishes, Maz
Thanks so much for your help Maz, Kerri, Linda, and the others that wrote in earlier, it is so kind of you.
I am trying to do a 20-30 minute walk most days and am finding it is increasingly necessary to do this to keep the circulation going in my legs. I get quite uncomfortable when sitting if I miss the walk for a day or two. It's also nice to be out and about having a change of scene. I take a camera with me sometimes, and it is a lovely way to remind me to take a moment to really look and enjoy anything from little flowers and insects to majestic cloud formations in the sky above.
The last few years have had rather too many ups and downs with health so I am coming into this MPN challenge a bit battered and worn down (I can see from what others have written that I am not alone in this!).
I will have a look at the resources that you mentioned Maz. Thanks for that.
Your story is very similar to mine I had the visual migraines steadily increasing in frequency u for about 3 years until they were almost weekly and finally my blood was tested and I Platelets were over 900. Like you, the aspirin resolved the visual migraines and it is over a year that I have been diagnosed with PV though i only had one phlebotomy Dec 2015.
I too am on the waiting game, lasting as long as possible without going on HU or something else. I struggle with fatigue too and have recently gotten permission to work from home 2/5 days per week through occupational health.
I have told the family members I am close to but not all.
My platelets are around 1100 - 1200.
I think mild exercise is important and good diet to maximize the circulatory system, though I understand being tired. I try to alternate between bed rest and at least one outdoor activity per day.
Hi digijools, thanks for your reply. I'm sorry that you have such a struggle with tiredness, and can understand the need to work from home. I would have little prospect of doing a job with regular hours now as each day is too unpredictable regards available energy! Glad that it was possible for you to take work home. I am troubled with the idea of letting my elderly parents know about this, but think I will have to because my level of tiredness is starting to make things auckward, affecting my ability to drive to visit them, and meaning that I feel really tired when I do... which isn't a good look!
My mom is turning 80 this year and I was afraid of telling her too because I am her main support network. I tried to emphasize that it is a chronic condition and I probably will be like how I am for the next 5 to 10 years. I find people who care relax a bit more if they know nothing happens too fast.
I, as many others do, suffer with terrible fatigue and brain fog - after doing lots of research and speaking to Specialists, I have eased mine by staying well hydrated (2.5 litres per day) - hydration helps the blood travel through the body easier, which in turn assists distribution of oxygen around your system and the added bonus is hydration helps ease and prevent headaches - hope this helps 😊
Good to hear from you, thank you for the advice about keeping well hydrated, I will definitely make sure that I drink more water. Sorry that you also battle with fatigue and brain fog, it is no fun at all. I had quite a good day today, but very bad the day before.. every day seems different!
Its horrible isn't it? Some days there is no explanation for it at all, then there are the days you wake up and feel "ok" so you get excited and push yourself too far then suffer the payback the day after lol!
It takes time to learn to pace yourself and it can be really frustrating at times but stick with staying hydrated and maybe a little walk each day to get the blood circulating you should be ok. We never get rid of the fatigue but we can lessen the effects of it.
I find drinking pure water all day can be a bit boring so I drink herbal teas and smoothies too, just to get up to my 2.5 litres - good luck and if you need any more info give me a shout xxx
Hi still kicking. Your story hit home to me because most of what you said applied to me. I felt very unwell for several years, live alone am 77 and had no support whatsoever,which was hard because I also kept getting chest infections. I became totally exhausted and anxious and finally had a "melt down"". I was prescribed Pregabalin and it has made such a difference. I still get tired but not in that "on the floor" way. So you might want to try it. Also, any of you lovely people who read this may find it helpful. I wish you all the very best and keep reaching out to us! Mary
Thanks so much for your reply, it is good to hear from you. I'm in New Zealand and have just sat down after working outside packing pots into my wood fired pottery kiln (I try to make a living from my pottery). Too dark outside now to do anything more today, but I suspect that I'll fall asleep in my chair soon, which I seem to do rather easily now! Sorry to hear of your poor health, frequent chest infections are no fun and can take a long time to get over, I had a lot of them when I was younger, but the body seems to knock me about in other ways these days. I will have a read about the medication you mention, it would be great if it could help me. I haven't heard of it before, but this ET thing is new for me, so I am sailing in "uncharted waters" as far as my knowledge goes.
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