Morning all
The last few weeks I seem to be constantly tired and struggle to get out of bed in the mornings vs a usually being up and about by 7am.
How do people tell if this is a symptom of ET or something else. Last bloods showed my platelets had increased but only very slightly to 510 so not really to levels that I would expect to see symptoms changing.
Lina
Hi Lina_uk, it's horible when you feel like this. Fatigue is part of ET and actually doesn't have any relation to the blood counts, it doesn't make any difference what level they are, high or low, fatigue can strike. However, if this does continue then it would be wise to speak to your haematologist about it, but if you are not due to see him/her for a while then maybe speak to your GP about it. If you are taking medication then your haematologist may suggest a dose change to see if this helps. But I myself get days when the fatigue hits me and I do struggle, but they are not often, just now and again, thankfullym so I do sympathize with you. Maz
Thanks Mazcd. At the moment I don't take any meds due to my age and only need to get bloods every 6 months to monitor levels. Referral to haemotologist is only needed if platelet counr hits a certain level. Will see if it subsides and if not arrange a follow up with GP
Hi lina, what maz and peter have said are so true,thats why it is important that when you feel like that to pace yourself and rest when it becomes overwhelming. Maybe talk to your cns,if you think that might be better as sometimes we don't always have enough time with our haematologists as we like and i find they have more time to listen and a better understanding of our symptoms. Atb to you,tina🤗
Hi Lina,
Sorry you are having so much trouble with fatigue, it is a most frustrating thing to try to cope with, and not fun at all waking up in the morning feeling exhausted rather than refreshed! I have ET myself, and I do find fatigue one of the most difficult aspects of it, although for me it is impossible to know how much is from the medication I take, and how much is from the disease itself.
With the help of your GP it is worth eliminating other possible causes of fatigue, as it can be caused by so many things. Once the usual "suspects" have been eliminated, then it is possible to be more confident that ET is the cause.
What Maz said about Fatigue being part of ET and not having any relation to blood counts is very helpful and something I will "file away" in my old head, as I sometimes have had to battle with doctors who don't even acknowledge any link to ET and fatigue, and this can be most distressing, especially when one is at "low ebb"!
One of the great benefits of this forum is to realise that you are not alone!
If it is of comfort, I must add that my fatigue tends to go in "seasons", I can be very bad with it for days at a time, then mysteriously be almost free of it. It is always good to keep in mind that it can and will move out of the way again!
Very Kind Thoughts.
Peter
Hi peter, where have you been hiding? Have you been hibernating in those woods that surround you? Maybe mr Smaug as been keeping you busy? Well peter you would love it in dear old blighty at the moment,we are experiencing record breaking temperatures like never before,flowers blooming up all over the place,lambs being born and all manner of insects we don't normally see at this time of the year. In fact i had 2 beautiful ladybirds in my kitchen yesterday morning. Alas,it is not forecast to last! Only got it until the end of the week, oh well, we will enjoy it while we can! Hoping this finds you in fine fettle. Atb, tina.🤗
So Lovely to hear from you Tina,
I have been hiding a bit lately, but have just this moment posted something here, so have popped out of the woods again! I do love spring, and (nice as it is here) it would gladden my heart to see Spring in England again. The spring flowers popping up, and the wonderful playfulness of lambs bouncing around on their wobbly legs would be a source of much joy. Your weather and ours here are rather like naughty twins... We are still summer, or something like it, but the Antarctic let out a great breath of cold air the other day, and a few places experienced near freezing night temperatures. I'm hoping for another month or so before frost so I can get pumpkins ripe and potatoes to full size, but it is a bit of a lottery now.
Very Best to you,
Peter xx
And to you peter, i'm rather looking forward to biggles making a reappearance on another epic mission,tally ho, until then peter. Must fly now,got an appointment with Gp,this morning and i've got the old haema wallah tomorrow,you know the one, the one with the white coat and monocle. Keep smiling😀 sending wishes to yourself, laura and those two wonderful cats of yours.tina🤗
Ha, ha! Tally Ho! Those haemowallahs certainly look resplendent with all that starch and spit and polish! Good show! I do hope that the old stick is of genuine help tomorrow and you have a helpful chinwag with the Oracle! I do find the old consult thing a bit stressful sometimes, a pity they don't provide G and T on the National Health! 
I'm sure it would help!
Chocks Away!
Biggles!
Hello Peter,
Your comment on fatigue coming in seasons certainly rang a bell with me. Last autumn / early winter I was regularly being wiped out by fatigue. My GP ran a blood test and found a large vitamin D deficiency. A 6 week course of very high dose vitamin D supplements produced a fantastic improvement. The fatigue hasn't completely gone but is massively improved - it's like another lease of life.
It may not work for everyone, but it might be worth getting tested.
Good luck and let us know how you get on
John
Hi John,
Yes, a good idea. I did get tested for vit D deficiency probably about a year or so ago (time flies!), and I was very low indeed. I think the standard treatment here was a week on high dose vit D, then one capsule per month. At the time I asked if I should have a follow up blood test to check that the treatment had been effective, but was told this was not necessary. I have been interested since then seeing the different treatment other forum members get for this, so might see if my current GP is more enthusiastic regarding retesting!
Best wishes,
Peter
Hi Lina. I have ET and also get hit by the random ‘fatigue bombs’. A kind soul here suggested taking chelated magnesium daily as a way of minimising said fatigue bombs. I find that this does work for me, but I still get hit occasionally but I feel it is less frequent.
Cheers
Mark
Hi Lina ,Urg the dreaded fatigue! Maz is correct last year I found my fatigue getting much worse and lasting for longer periods with no discernible difference in my bloods. It is just a part of having an MPN and the only way to deal with it is to be kind to ourselves and rest as much as possible during an episode. Yesterday I had quite a long walk for the first time in ages without feeling too tired although the Bone pain kicked in soon afterwards. I am PV Jak2 negative.
All the best
Garry
Hi Mark,
Interesting about the Magnesium and delighted that it helps you dodge the fatigue bombs! Really good to hear of something that helps.
Best Wishes,
Peter
Hi everyone, I’m on Pegasys for PV (with elevated platelets). After a year on Pegasys my blood counts normalized and I’ve been able to reduce the dosage. Sometimes it’s very difficult to understand why we feel fatigued - is it the disease, the medication or something else? A few months ago when I complained of fatigue to my haematologist (despite normal blood counts and iron - another thing to keep an eye on!- )he checked my B12 levels and found them to be too low. Injections of B12 have made a big difference. Apparently the B12 is used up making all these extra blood cells! Anyway - might be worth checking.
Lots of Good information here. I’m much like Peter. Fatigue can strike out of nowhere, hangs around a few days and then I’m fit as a fiddle. I do find this balanced itself out a bit and I am stronger, since I started taking CoQ10 in September. Keeps my mitochondria (energy packs in every cell of our body) running efficiently. On the lower days, I make sure I take breaks, before I get too tired and then I’m up and going again. If I push through, I crash. Get to know your body really well. Cheers!
I’m tired today never slept well drained but at least went out for a walk in the sunshine
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