I’m 39 and diagnosed ET 1 year ago. My platelets are around 1000 and I’m on Baby Aspirin daily. I suffer badly with fatigue and forgetfulness, which I attribute to this condition as that is the reason I went in for a blood test in the first place!
My Haem told me that he was happy with my numbers and would only do something if I hit 1.5. My issue is that I am in the process of a career change and have a tough busy 2 years coming up to qualify in my new field and I can’t be doing with the brain and body fatigue. I asked him to help me reduce my numbers, which was very apparently not on his radar. He has referred me to and MPN specialist who I am seeing tomorrow with the hope of getting proactive with the condition.
It seems to be the norm for anyone under 60 with a less than 1.5m count to just wait and see but this is not working for me and is getting on the way of my quality of life. Brain dead in work, and asleep by 8pm on the sofa. Does anyone else suffer with the fatigue and has anyone else in my bracket successfully convinced their consultant to reduce their numbers?
Thanks
Kerry
Written by
Mackydee123
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Can I suggest you watch the Presentation headed Interferon/Pegasys that I posted yesterday.
If you go the drug route, in view of your age, you are likely to be prescribed Interferon, hopefully Pegasys which is more easily tolerated.
I started Pegasys about 2 months ago and very pleased with reduction in symptoms plus no side effects at 60 mcg per week. Can go to 180 mcg weekly but you might get by with 45mg weekly or fortnightly. Hence side effect risks reduced.
It is a drug that divides opinion and some people suffer awful side effects and long term health issues unknown. However appears increasing likelihood that it MAY slow progression (Ropeg year 2 results impressive) but for a sub set. The Presentation covers this.
Progression should not be a great concern for you since ET and young but this is still a risk factor.
I have PV and I was prescribed Pegasys, through a second opinion (this was 17 months ago). From my symptoms this was the best thing I did. Before going to your appointment. Read the pros and cons of medication. From what you have written sounds like you think it’s time for meds. Symptoms are equally important , as your lab results Are.
Thanks everyone. I had been exercising and it was really helping but now when I get in I’m too tired to do anything 🙄, I have peaks and dips so I imagine in a couple of weeks I’ll be able to get working out a bit again. I just can’t handle the inconsistency some weeks I’m great and others I’m like a zombie! Hopefully a chat with the new Dr will prove fruitful.
Hi Mackydee, sorry you are going through such a "dip". Must add to the pressure of starting a new job. But just to let you know I am under 60 with ET, with similar numbers to begin with, but now at 600 and was started on Hydrea straight away. This treatment has been maintained and has helped so much! Causes a different kind of fatigue with this medication, you sleep and you feel okay.
If a person's life is been affected then the haemotologist in the public hospital that I see is not an MPN specialist, but treats you to reduce the platelets, or red blood cells if someone has PV. So we can have a better quality of life. Yes, walking is great and exercise (I just walk every day no matter what as we have a dog!) but I understand it can be hard to get going.
I wish you all the best at your appointment and hope you get a lift soon!
Hi, I was in a similar situation, diagnosed last year aged 38 with platelet levels around 1300. Because of the symptoms I was having and my levels kept creeping up each week they started me in Hydroxycarbamide. Over the last year my dose has been increased but my levels are now around the 450 mark. Due to a change in diet, lifestyle, exercise and the Hydroxy I feel so much better. Being part of this group makes you feel better too, so much information and positive vibes. Everyone is different and reacts to treatment differently which makes this a very unique path that we all travel down. But eventually you will find what's right for you and what works best. I believe it's a bit of trial and error.
Good luck to you x
Fatigue and forgetfulness were prominent symptoms I had when I visited my GP a couple of years ago. Along with discovering high platelets, around 1300, I also had " low normal" vit B12. I did a lot if research and treated myself with high dose vitB12 , a tablet which dissolves under your tongue. Within days, I felt fantastic, loads of energy and I haven't needed a afternoon nap since then. My frequent headaches are a thing Of the past. Within 2 months, 95% of my symptoms vanished including burning feet. I had been on the verge of giving up work/ driving etc but now have a busy, full and active life thanks to B12. ( interesting website: b12deficiency.info )
I don't take anything for my platelets. I have ET jak2+ve. The haematolgist wanted me to take ascal, like aspirin, but I stopped due to side effects after 6 months. I did my own research on ET and discovered treatment not necessary as I am low risk, and no prior thrombotic events. Aspirin should be used with extreme caution in primary prevention as it can cause gastric complication or intracranial bleed.
I suffered a stroke aT the age of 50. Not ET related. Please take an aspirin equivalent. I take clopidogrel. I was very lucky and was off work for only six months.
Statistics for stroke victims.
1/3rd die
1/3 survive but left with great disabilities.
1/3 survive with little or no disability ( I’m one of the lucky ones?
sorry to hear you had a stroke at a young age. Can't have been easy. Unfortunately, being on aspirin (unnecessarily) increases your risk of having an intracranial bleed which tend to be more catastrophic/disabling or potentially fatal than a stoke due to a clot, as this can be treated with clot busting drugs.
Hi Debra! Thanks for the input! The B12 sounds really interesting! I will look into that. I can manage all the other symptoms it’s just the fatigue is killing me. It embarrassing when I can’t remember names, and even worse when I can’t answer a simple query from my boss in work! 😣
I have ET and cured my fatigue in three days with magnesium, buy some Doctor's Best High Absorption Chelated Magnesium and take four tablets a day, I also use magnesium flakes in the bath and magnesium oil. Do not take Oxide or Citrate they are laxatives.
I’m a farmer and I can tell you will not get the required amount from just food, everybody is low in magnesium, the blood test is a waste of time. After a few days you should get a rush of energy, you need to take magnesium everyday and it can take over two years to build up your reserves.
Hi Peter! Thanks for the info. The only thing I’ve tried so far is magnesium spray for my sore wrists which did work! I think my thyroid was tested about 3 months ago and was deemed ok. I’m with a new consultant today so I might get a full set of bloods done again. I will definitely look into it, I think I have it hard working/studying but I imagine that’s nothing to farming!!
Aspirin should not be automatically prescribed for ET platelets ≥1000 as high platelets are often associated with low Von Willebrand factor and thus a bleeding tendency. Aspirin then is contraindicated. Fortunately, you will now be in good hands with your MPN specialist. Hope you will be started on medication and feel better soon.
He was to be fair, I really liked him and didn’t demand a second opinion or anything but I broached the subject of proactive meds at my last review and he immediately referred me to the specialist, and made me a fall back apt with himself in case I didn’t get relisted on time, which I thought was pretty decent!
Hi mackydee 123, I to was diagnosed wit ET about a year and I am on aspirin and hydroxycarbamide , and just recently I’ve been so forgetful so I was glad to see your post that your having the same problems and i wasn’t loosing my mind , lol
That’s what it feels like! I’ll be half way trough a sentence and completely forget what I’m talking about. Can’t remember names at all! It doesn’t help in work when my boss calls me in and asks about a file and I just stand there staring at her dumbstruck! Lol, thankfully she has seen me on my good days and is pretty cool about the whole thing!! 😨
Oh what a lovely understanding boss you have. I don’t know much about it but when I was teaching we had a teacher suffering from multiple sclerosis. She was entitled to help at work. At the end of a day a lady would help her with paperwork etc. I’m not sure if that’s just the teaching profession or a national grant available maybe it would be worth contacting the department of works and pensions.
So just out from meeting my new Consultant, she is happy that I’m a good candidate and is staring me on Pegasys 45mcg on Friday. She was very lovely, listened to all my complaints lol. She wants to start me low to get my system used to it and then up my dose if required. So here we go, the first steps to dropping my numbers!! 🤞
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