Hello! I'm new here and took me a long time to write but I simply don't know what to do anymore. I don't even know I'm writing to the proper forum. First, let me tell you a few things about me. I'm 42, overweight and has health anxiety. Have high blood pressure but that's under control with pills. Last October I went to my GP because I had constant headaches, they were mild but were going on for weeks and no paracetamol or ibuprofen helped at all. Then it went away but came back a few weeks later and again and again. This April I had blood test , CRP and platelets were high. Had 3 repeat blood tests and platelets were still high so in July the GP referred me to a hematologist. I got my appointment for November. She also told me I suffer from migraine and gave me pills. Why I'm writing is because I've been feeling poorly lately all the time. I'm always tired, weak, light headed, feeling off-balanced and have this strange dizzy feeling like I'm on a boat all the time. And of course I worry a lot and feel depressed because feeling always poorly is just not good. Can these symptoms be from elevated platelets? Or the higher number is caused by some other illness and it's a symptom as well? I know no one can tell me these from behind a computer but I§m just so tired of being like this. Did anyone have something similar? Thank you all for reading it 
Elevated platelets and feeling poorly all the time - MPN Voice
Elevated platelets and feeling poorly all the time
Hi there Jade
I had symptoms of extreme fatigue ,headaches flushed face for quite a long time. I also suffer from anxiety and high blood pressure and a heart problem. Apparently my platelets had been high for a couple of years. Eventually was diagnosed with ET. Platelets can be raised due to other reasons like infection so until you see your heamo try not to worry. The support here is amazing and we've all been there on the first worry of blood tests etc. If you do have an mpn. The treatments available are varied and you will be monitored closely but most of us lead a relatively normal life with help keep in touch with the forum and let us know how you get on. Hope you feel better soon Pippa
Your haematologist will/should do DNA studies through simple blood test to check if you have a genetic mutation very common with MPN's, JAK2, CALR, or triple negative (no mutation). What was your platelet reading?
In the mean time make sure you drink plenty of pure water until your urine is clear & cut down on anything dehydrating i.e., coffee, tea, cola etc
The symptoms you speak of are very common with MPN's and if you do have one there are medications available to manage it. They sound scary but the majority of people do well on them for over 20 years and a lot of research is being done now to improve on them.
One thing worth noting & not common knowledge among medical professionals is premature artherosclerosis in MPNs. Might just be something to keep in mind.
Good luck, a bit of a long wait for heam but take care of yourself & don't push yourself too hard in the mean time.
Hi Jade. All very common for us here. This is an amazing community. You're definitely in the right place!
I'm 7 years diagnosed, probably had it much longer, 5 years on meds. I'm changing my diet with support from Gill at Alivenkicking as I believe it will make a massive difference. (Message me if you want to know more about Gill's work and how we're working together 😊)
Over the past couple of years I've been eating low sugar, mainly from green veg, so no obvious sugars, no artificial sugars (so no diet products ie artificial sweeteners) and I drink 3 litres of water a day and it helps a lot. I'll write more about the new diet once I've got my head round it!
Self care is vital. Talking and sharing with folk who get it is vital. Good nutrition and hydration is vital. Support to make this big change for me is vital.
Keep talking and use this forum for help and support. It's amazing .
Liz x
Hi Jade, in the beginning I had symptoms similar to you. Frequent headaches so I was living off paracetamol, really tired all the time, falling asleep in the day, dizzy, uncoordinated, brain fog so bad that some days I couldn’t drive... the list goes on. Like you I had a blood test which revealed three things, two of which the doctor ignored as I was technically in range, but from a little homework it was easy to see these were major problems for me.
Yes I had high platelets around 1300 so had Haematologica referral - and they too ignored my other concerns, which were low vit B12 and under active thyroid.
I then took charge of my own health sorted out B12 first which led to a fast and miraculous recovery of almost ALL of my symptoms. About 8 months later a few symptoms crept back so ( after additional private blood tests) I started treating my thyroid issues, again with great results.
My brain now works again, I am not perpetually tired and driving is no longer an issue ( just as well as I live abroad and frequently drive back to UK)
The reason I am telling you this is that I hope you had a full blood test from your Gp which included :B12, folate, iron, TSH, FT4, FT3, ferritin, TPO and TG thyroid antibodies. Your MCV is also a helpful marker.
Just because results might be in range does not mean they are optimal. I appreciate doctors may feel their hands are tied with treating people who are “in range “but there is a lot of good advice on these forums ( B12 and Thyroid ) if you think your results are a bit in the low side on how to help yourself.
Good luck.
Debra
I would definitely associate your symptoms with mine. Ask your doctor to look for a haematology appointment in other hospitals in or easily accessible to you. That’s what I did.
Good luck keep me informed.
Hi jade, yes I have had similar problems. Lots of haemotoligist do not understand MPNs inasmuch they do not necessarily believe you can get symptoms. So maybe yours has not looked for jak2 or calr, do ask. Hope you feel better soon. ☺
Thank you all for your answers. My platelet count was first high in April it was 488, then 475, and 485. A year ago it was normal.
Thanks for all the advice, I try to drink plenty of water and eat as good as I can. I figured losing weight and eathing healthier can only have a good impact on my life.
It's a bit scary though that all of you had very similar symptoms. I'm already worried sick.
I'm gonna see my GP today and ask about the haematology appointment, November is so far and I'm not sure I could wait that long feeling so poorly all the time.
Hi Jade, even if you do have ET, there are loads of folk on this forum who are very much alive and kicking after being diagnosed years ago. You sound a positive person, so keep looking after yourself as you’re doing, sleep/rest extra if you have to, don’t feel guilty about it.
Kindest regards Aime xx😻😻
Hi Jade, first of all it sounds like you're not sure what you have, please as for a Bone marrow biopsy which is the only proper way to diagnose which MPN you have. Your platelet count doesn't look extremely high to me and of course all of us react to the symptoms differently. Keeping our weight and cholesterol down help a lot, keep hydrated, try an anti-inflammatory diet, all help. And once you're diagnosed what exactly you have you then will have the proper treatment from your Haematologist. Hope you feel better soon.
Blood test gives good indication but a bone marrow biopsy gives accurate diagnosis.
I’m sorry to hear of your troubles. I’ve experienced all of your symptoms, as well. Sometimes I’m not sure if it’s the medication already illness itself. I hope you find the answers that you’re looking for. You got some good advice on this forum already.
Take care.
If you are consistently showing elevated platelets, then you are in thrombocytosis. The question would be whether this is a primary (essential) or a secondary condition related to something else. You also need to look at the rest of your CBC to see what level your red and white blood cells are. The docs will do a number of tests, including to determine if you are JAK2 positive. If not JAK2, then CALR and MPL mutations will need to be ruled out.
You have definitely found the right forum. this is a great place to get information and support. I was diagnosed with ET over 30 years ago. My ET progressed to PV about 6 years ago. I am fortunate to have a JAK2 mutant allele burden of only 25%, so my symptom load is relatively low. The main point is that after 30+ years I am still alive and kicking. There can be challenges to managing a MPN, but there is good care available and lots of support for learning to deal with it.
Please be sure to find a hematologist who has expertise in MPNs. These are rare disorders (1/300,000) and most docs, even hematologists, do not have the KSAs to provide optimal individualized care. Here is a list of patient-recommended docs with MPN expertise mpnforum.com/list-hem./ . Bear in mind that the doc works for you, not the other way around. You should feel empowered to treat the first appointment as a job interview and ask the doc specifically about their level of experience treating MPNs. Assertive patients receive higher quality care. Passive patients do not.
All the best to you.
Thank you for your very thorough answer. My last blood test was in June and the platelets were 486, Red blood cell count 4.84 10*12/L (on the test result it says above ref. limit), total white blood count 9.1 10*9/L. Now I'm not a doctor, so all I can do is use Google to see what these mean. You are right about patients need to be more assertive, I am not that so I'm gonna try
Well, I am not a doctor either - I do not even play one on TV. I have, however, learned a lot on my MPN journey. If you have multiple blood cell lines that are elevated, then the suspicion would be for Polycythemia Vera as opposed to Essential Thrombocythemia. Both conditions can be caused by other disorders, so a comprehensive look at your all of your health issues is needed.
Regardless of what the "it" is, try not to sweat it too hard. There is lots of scary stuff out there on Google University, but the truth is most of us with MPNs live long lives - albeit with some quality of life issues at times. One piece of good news is that effective treatment for the MPN can benefit other health issues you are having. Once I started phlebotomy for the PV and my blood viscosity went down, my blood pressure went from Stage 1 hypertension to normal (average = 115/75).
So - lots to learn on this journey, but plenty of time to learn it.
FYI - My hemo-doc question list.
1. How many MPN Patients have you treated?
2. What recent training have you had regarding MPNs
3. How do you view individualizing MPN treatment based on my MPN profile.
4. Would you be willing to work with a consulting MPN Specialist?
Lots of hemo-docs don't have much experience with MPNs, so they default to the standard treatment protocol that they are familiar with. While this protocol may be correct for 60% of all patients, it may or may not be the right approach for you. It is really important to find a doc who will work to individualize your care so you get the optimal treatment for your unique presentation of an MPN.
All the best
All sounds very familiar. I presented with constant headaches, mainly left sided. Dizziness, altered vision, auras, chronic fatigue for 5 years before diagnosis. Went blind at times, multiple vision.Now diagnosed ET Jak2 mutation from February. You are not going mad. Now get amitriptyline for headaches and on hydroxy and aspirin. Was off work 3-4 months, back on return to work, building up hours and finally starting to feel normal again. It does get better once you're on the meds.
Hello...we have similar feelings and symptoms I feel you ..even today it seems like I am always in a boat and my platelets is about 500plus the last time I had my bone marrow biopsy and waiting for the result. I know that is very hard to deal with I am a teacher and I always distracted with what I feel. Out of balance when walking and seems I am on a boat....hahah..so frustrating but there is nothing I can do. With this kind of disease...I am on hydroxyrea and aspirin now and alao with folic acid.😭
This is how I first presented recurrent severe headaches. Feeling dizzy, lightheaded. Sometimes felt like I had a fish bowl over my head, so sounds were muffled. I often experienced visual disturbances and numbness down side of face going into my scalp. I sometimes had kaleidoscope vision, so saw the same thing six times. I lived and worked undiagnosed for years. At the point of diagnosis my platelets were in the 1590's.Now on 2 Hydroxycarbamide Monday to Thursday and 3 a day for the rest of the week. I had a brain scan for headaches. Neurologist said they were Migraines and recommended Amitriptyline. The scan showed 2 Aneurysms but he said wouldn't cause pain, that's the MPN. I also developed vascular disease in my feet and all my toe nails are black. That's permanent damage due to late diagnosis. I did have a blood test in 2015 and platelets were 749 but G.P forgot to tell me and everytime I attended for headaches, dizziness, they didn't check my notes so diagnosed sinusitis. The headaches are much better but I still have altered sensation in head and pain and constant lower leg and foot/toe pain/numbness. The medication does help with all symptoms but can take a while to feel full benefits.
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