I am 48 and was diagnosed with ET about 3 years ago. I just take aspirin, and though my platelets are in the 1100s, they are stable. However, I am just so totally exhausted all the time. I've lost count of the times I've fallen because I literally fall asleep, say, while in a Q. I also get [more] headaches, itchy skin, blurred vision and aching joints - not the good kind 😜
I DO also have severe neurofibromatosis 1 which causes me many issues, but the way I feel lately is different. Could it be the ET? I don't get seen by a haematologist any more, just have yearly platelets check at my GP. Anyone else feel like this, or am I just suffering the effects of a lifetime of poor health? Thank you, my lovely friends
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lynnieb
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You must go back to your GP and get him to refer you back to the specialist. You should have your bloods checked at least every 3 months & with platelets over 1000 you need to be more closely monitored as other things can develop I.e., von willebrand factor and thinning of the blood, which aspirin could need to be withdrawn. Do you bruise easily?
The fact that you fall due to sleepiness may well be caused by something else. Fatigue is an issue but literally falling asleep suddenly does not sound like the "norm". This may be due to your neurofibromatosis, could they be seizures? Your GP needs to do a thorough work up & get you the right treatment.
1,100M is far too high. You possibly require another form of medication to reduce your platelets back closer to normal levels, between 150,000-450,000.
Sounds to me that you are definitely at high risk. I have had two (2) TIAs, (minor brain strokes), and in both cases my platelets were 1M+ at the time of those TIAs...
Please don't risk it and see a specialist VERY soon...
Any time one's platelets are over the 1M marker, they are NOT stable, to the contrary, they are at risk, in my view...
Try asking your GP for a vitamin D test. I'm ET JAK2+ and suffered badly from fatigue. Turns out my vit D was very low and 6wk course of high dose D tablets had an amazing effect. No more fatigue!
My vit D IS very low. I can't be prescribed a higher dose as I already take the maximum. My D level is now lower than it was before I started taking the supplements. I go to see an endocrinologist in April. Good call!!
Good luck with the endocrinologist - hope it works as well for you as it did for me. I think the 'normal' vitamin D supplement dosage is 1000 - 2000 IU per day. I was put on 40,000 IU per week for 7 weeks which had a fantastic effect on my energy levels- now on 1000 IU per day and maintaining a pretty 'normal' lifestyle
Hi Lynnie. Write out all your questions for the next GP visit and make sure you get an answer that you understand. Take a smart buddy with you if you are less than 95% confident. I predict that your GP will either inspire confidence as to their knowledge of your ET and MPNs, or you will get a referral to a consultant who is. Don’t take no for an answer and remember our condition can be controlled, pretty much. Sooo sympathetic about feeling knackered. Take care.
Dave
You really need to be seen by an MPN specialist. A lot of haematologists are not experts never mind GPs!! Do you have one of the genetic mutations?
OK. There are other genetic mutations you should be tested for. An MPN specialist would seem sensible in all your circumstances. Hoping you get some good treatment that solves your symptoms.
Completely agree with other comments. Extreme fatigue is not normal. What you describe are all, potentially, symptoms of ET. It sounds like you need an urgent and thorough check over by an MPN specialist. My platelets were stable at around 1100 for a long time but I was also extremely fatigued. I was also very low on iron. Hope you get some answers.
Symptoms are from high platelets. As others suggest, see specialist. With your symptoms and platelet count, I would think specialist would provide medicine to lower count. Headaches will go away, risks will go down, but aches and pains will probably still exist. I am calr Type 1 ET and take low dose aspirin and hydrea, so just sharing my thoughts from my journey. Best to you.
I also agree with fee. Your platelets count is very high and you need to see a hemotologist as soon as possible and be on regular visits. Aspirin is not enough. Good luck!
I also agree with all of the above. We are sometimes weak, but not what you are describing. Please go to a hemo specialist. Also get a complete check up, complete basic blood work and complete nutrients, hormones, liver, kidney, enzymes, immune globulin. Get allergies and intolerances rested too. You may find that nutrients are off and you will have this test for comparison later on. EEG is also not a bad idea. The enzyme CoQ10 will get you up and going as well. It helps all your cells have more energy; heart, brain, muscles, everything. Good luck!
Hi. I’m so sorry to hear about what you’re experiencing. You do need to see an MPN specialist AND get a very thorough work up by a doctor who has a more general practice experience.
I know some people on here said many of their symptoms got better after getting their platelets down to a reasonable level. For me that’s under 400 but I’m 67 & had multiple blood clots in my lungs. If you’re near London perhaps you could get in to Dr Claire Harrison (sp?) who UK people think is excellent. I’m in the US but have heard of her as a top specialist in MPNS.
Please keep us posted and know that we’re here for you. Katie
Thank you all so much for your advice. I am having my platelets checked tomorrow, and the results are going to be sent to the haematologist I used to see. If they are still 1100+ I will demand a face to face appointment to tell her my concerns.
The NHS is such a mess at the moment, it is hard to get anything done. I will let you all know ☺
Completely emphasize lynnie about the headaches and exhaustion, i am sleeping for a couple of hours then staying up for a while, then returning to sleep again. What is shocking about reading your post,is why are you only seeing your haematologist yearly,especially with your platelets being over the 1000 mark and your other health implications? Did you question why you will only will be seen once a year? Do you have easy acess to a a cns? What part of the country are you living in? You must either see your Gp or contact your cns over this. No one should have to suffer and live with these symptoms you are experiencing. Please let us know how you get on. Sending you an xxl hug.tina.xx🤗
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