hi, this is my second time writing on here, just last week i have been diagnosed with E.T, so i have been feeling ill for a long time, and thought it was the menopause, i just kept going working etc, but now i know what is wrong i am feeling a bit scared in case i push myself (which i always do) into having a stroke or something, all i have been told to do for now is take an aspirin a day, and it's really early days, but is this going to take away the symptoms? i have, dizziness, fatigue, headache, palpitations and terrible ringing in my ears, just feeling a horrible feeling most of the time and i am just wondering how you are supposed to continue working feeling like this, before i had the hope it would go away soon (i have been like this probably near enough two years!) but kept thinking once i get by the worst of the menopause i will feel back to normal, now i am wondering how i can continue if this is how i am going to be, will taking an aspirin a day reduce these symptoms? i am so tired all the time all i can think of is being in my bed!
just been diagnosed E>T: hi, this is my second... - MPN Voice
just been diagnosed E>T
hello doglover49, I am sorry that you are experiencing these symptoms, which are associated with ET, many people do experience them in varying degrees of severity, and they can be very debilitating and distressing. I would advise that you discuss these symptoms with your haematologist or the specialist nurse, and perhaps discuss whether or not they feel medication may help. A lot of people do take medication, like Hydroxycarbamide, to help with the symptoms, so it is worth asking.
We have some information on our website, under the ways to feel better section, which might also help you
mpnvoice.org.uk/living-with...
With regards to working, many people do continue to work, but if you are struggling to cope at work at the moment, it might help for you to talk to your employer and explain that you are experiencing these symptoms and that you may need to take time during the day to have a break.
best wishes, Maz
thank you, i am back to see haematologist in august, i just felt a bit frustrated today as i just had a bad day, i think i need to give things a bit more time and cut down on my work, thankyou it's just all a bit new to me and now having this in my mind i am worrying if i push myself too much
So sorry to hear that you’re feeling so frustrated. It is completely understandable. As I think I mentioned to you before, I’m post Et Mf, having been diagnosed with Et in 2008 at age 52, and Mf in 2019. I’d been suffering from terrible headaches for months prior to my diagnosis of ET, and low energy and fatigue for years, which I put down to fibromyalgia and the nature of my job as a special needs teacher. I quit teaching in 2003 and started selling insurance, where I could make my own hours. Anyway, fast forward to 2008, my hematologist put me on hydroxy, and within months my headaches went away. My point of this long story, is you may have to make adjustments in your lifestyle. I’ve experienced all your symptoms on and off over the years, but I’ve tried to live as normal a life as possible. This year I started taking more supplements, like omega-3, vitamin D, and methyl folate, and they seem to be helping with my energy. I’m also in physical therapy for my herniated disc, and my strength and balance issues have improved tremendously. I wish you the best.
Cindy
thank you, i am just finding things a bit difficult at the moment, i am self employed a dog groomer and have probably been working too much the last wee while, but i am trying to cut my work down, it's the tiredness more than anything just now, you are right i need to adjust things in my life to make this better, it's not going to be easy, i have so many faithful clients of which i am grateful but i am going to have to let some of them down, i think i was feeling once i got a diagnosis and some kind of treatment i would be okay, and just a bit wondering if a small aspirin a day is going to make any difference, sorry just had a bad day today!! thankyou for your reply i just want to keep trying to be normal too but at the moment i am finding it difficult
You certainly don't have to apologize. We are all going through similar issues. My adult children keep telling me to retire, but like you, I've build up quite a base of clients (human) , lol, who depend on me for help. The fatigue can be debilitating and its hard to be strong all the time and put on a brave face. Sometimes, I feel fine in the morning but an hour later, can't even hold my head up and I have to lie down. This is a wonderful site and if you need to vent, this is the perfect venue. Sending virtual hugs your way.
I don't have the answers regarding the baby aspirin. You might want to get a second opinion from an mpn specialist.
Feel better.
thankyou, that's exactly it, you start off not too bad but then it just comes over you, i am also getting very shaky and dizzy quite a few times during the day which is not very good while trying to groom a dog! putting on the brave face is getting harder, i think once i got the diagnosis i expected a magic pill, if only!!
I was diagnosed with ET in 2017 and was suffering all the symptoms you mentioned. Although I was put on hydroxycarbamide the fatigue wouldn't go away. My GP found that I had a vitamin D deficiency and put me on a high dose programme for 6 weeks. The results were amazing - it was as if someone had flicked a switch and suddenly I had energy again. We often assume that ET is the cause of many of our problems and just accept it, but it's worth keeping an open mind and looking at all options.
I hope you find the solution that works for you
John
thank you. i was told last week as well they discovered i needed the vitamin d tablets as well so have also started them, maybe i am just not giving things enough time, i just want to be able to work etc without feeling terrible, it is the lack of energy getting me down just now
That's good that you have confirmed vitamin D deficiency. Depending on how deficient you are (mine was down to about 27% and should be 70%+) it might be worth asking your GP if an intensive course would be suitable. Over the counter tablets are usually 250 iu or 1000 iu strength. The course I was prescribed was 2 x 20,000 iu doses per week for 6 weeks and I now take 1000iu daily increasing to 2000 in winter.Good luck, but remember that what works for me may not work the same for you
John
Hiya. I am post ET MF and I recognise the points you make about fatigue. I have a very dull on job, which I have managed to maintain well but I did need and xonrinue to need to keep watching my schedule, working out what fatigues me. Maybe keep en eye on your diary for a couple of weeks ans make a note of when you feel the fatigue. What works for me is to avoid any really tricky meetings at 4pm when my mental shutters come down, I can work but can't process enough to talk coherently , or at least I find that extra strain really knocks me out. That and I try to create some thinking space in a day seems to keep me on track with a little but of daily exercise like a walk.. good luck
Much of what you are reporting is quite common with MPNs. The secondary constitutional symptoms are often more troublesome than the primary risks of thrombosis and hemorrhage. This has a lot to do with the other aspects of what deregulation of the JAK-STAT pathway does in our bodies, including causing the overproduction of inflammatory cytokines. Aspirin can help reduce the risk of thrombosis and decrease microvascular symptoms. The low dose is not enough to provide much in the way of anti-inflammatory benefit however.
The good news is that there things you can do to improve your quality of life by reducing the symptoms your are experiencing. As Mazcd suggests, there are medications that can help reduce symptoms. It is often the case that we begin treatment with these agents to reduce symptoms rather than reducing the risks of thrombosis/hemorrhage. Here are a couple of refences on this topic.
mpnjournal.org/how-i-treat-...
legeforeningen.no/contentas...
There are some excellent presentations on this Website.
mpninfo.org/conferences/202...
It is important to review all of your treatment options: Aspirin-only, hydroxycarbamide/hydroxyurea, PEGylated Interferon are the first-line treatments. There are other second-line options like ruxolitinib and anagrelide as well. Each one of these options has its own risk/benefit profile. We each respond differently to each option. The best thing to do is to consult with a MPN Specialist rather than a regular hematologist. this is the best way to receive optimal care. Here is a list mpnforum.com/list-hem./ .
There are also commentary health interventions that some of us benefit from. Diet, nutrition and general health are more important for people with MPNs. There are also complementary health interventions that some of us have had success with. It is best to review these options with a knowledgeable provider like a Functional or Integrative Medicine provider. Some of these interventions can be very helpful.
Hope that helps.
thank you, i will have a look later on when i finish work
I do get your frustration and feeling low with all the physical symptoms you’re having. I too thought some of my symptoms were down to the menopause, as suggested by my gp too.Like others on here, I was found to be very low in vitamin D. Was prescribed a very high dose for 3 months to ‘restock’ my body, and have since been taking a supplement to make sure it doesn’t go low again. People with MPNs can also be low in other vitamins and minerals. Maybe ask your gp for a full check, or check your records if you have had one recently. Vitamin D affects mood and energy, and taking a supplement could help you maybe? I definitely feel better since my ‘restock’!
Though some people find Hydroxy helps relieve some of our symptoms, it doesn’t for everyone. It’s hard to live with fatigue, and the other symptoms you’re having. It’s worth seeing your gp too, as well as raising it with your haematologist, about anything or any referrals that could be made to help with them.
Virtual hugs to you x
thankyou, i have been told to get vit D as well, i am assuming they would know if i needed anything else, it's horrible just feeling so tired probably the menopause is happening as well, you just want to feel 'normal' again!!
I've just put my first 'hrt' patch on a couple of days ago....gp says won't be able to really ell if it helps unless try it - because I suffer sleep deprivation due to night sweats, which I think are worse due to the added menopause heat episodes. Might help my low mood and fatigue too, am trying because anything that helps is welcome right now! 
You can be quite low on some vitamins/minerals and they might not tell you, if you are still in the average range. You can look at any blood tests your gp does if you have online access to your records, but discuss any supplements you are thinking of taking with haematology/gp. x
I see you have some great advice from others about ET. I too was diagnosed around menopause time and I had gone to gp with very similar symptoms. Thankfully my gp also tested vitamin D, B12 and folate. My B12 was in range but near the bottom. Vit d also below range. I hope your vit levels have also been tested, if not get them done.
B12 has been a real game changer for me and all the symptoms I had, ( fatigue, daily headaches, so dizzy I couldn’t drive some days, thought I’d have to give up work etc) , all these symptoms went , some with days the rest by the end of one month.
Might be good to exclude these, just to be sure.
the GP phoned me and said i had to get vitamin D, do you think they would have told me if i needed the other ones as well? thanks
Possibly not, for several reasons.
1) they may not have tested the other vitamins.
2) they might have, but have decided because they are in range they are not important.
3) they might be out of range, but they have still have decided they are not important. (I know plenty of people where this has been the case and it was only when they got copies of their results they could see there was a problem)
I always recommend people get full copies of all their lab results. You can then see yourself if things are going up/down/same etc over time.
It is your legal right to have these, so don't take no for an answer.
Nobody cares about your health as much as you do. You have to be proactive and do some research yourself.
If you haven't been tested for B12 and folate I would suggest you ask your GP to do this, along with thyroid tests, ferritin and iron. You can also do these tests privately too if you prefer.
Sadly, due to lack of training of all doctors, very few know the importance of vitamins, especially B12. Symptoms from B12 deficiency can precede haematological signs by months/years, so if you are waiting for your blood levels to fall below the range, you could be suffering unnecessarily. NB: With neurological symptoms resulting from lack of B12, there is a window of opportunity in which to treat, otherwise the symptoms can become permanent.
Did your GP call you only after you asked about the results?
If they only called after you made a query, you have to wonder why they didn't contact you sooner, if your vit D was low enough to need supplementation.
I now rate all doctors on their knowledge of vitamins now 😉. They mostly get an 'F ' from me.
thanks, yes i now feel there is not much trust in GP's. i will look into what you are saying, they did call me last week about the vitamin D, but i have not even seen a GP throughout this, it was a nurse who got the blood tests done, of course no one can hardly see a doctor cause of covid nowadays
Hi doglover49 I hope you have a better day today. I’m on aspirin & suffer from fatigue & lightheadedness. My haematologist suggested I try online yoga or Pilates to help with the fatigue so I’m giving that a go, so you could ask your haematologist about that xx
thanks, i will see how it goes, i was hoping for a miracle pill! but if things don't improve i will look into those
You will get lots of help and advice on here. Like you I thought most of my symptoms were menopause. I take hydroxcycarbamide and clopidogrel and a year on fell pretty much the same.
Getting the right treatment is vital and I hoping my haemo will switch me to interferon which would have been my choice but for covid closing the clinic's down.
I do get encouragement from reading people's posts and advice offered by others, it's nice to hear from other in the same situation.
I hope you start to feel better soon, the group is always here.
thankyou, i can't believe all that time i was thinking it had been menopause it has been this, i even used to get visual migraines quite a lot, i could not even see for about 20 mins, the GP sent me to the optician!! they told me if you can still see the colours when you close your eyes it isn't your eyesight!! but again i thought it was menopause, it all started with palpitations, and i was sent to get a heart monitor home for 3 days, it's been going on for around 2 year as well, sorry to hear you still feel the same, that's what am worried about these feelings being here to stay and just having to continue feeling like this
Feeling for you I can remember feeling like this only a few months ago but the people on here are fab and any time your worried there is always someone to help! Best wishes!!!
thankyou, definately, i am so glad to have found this forum
Hi. Very similar to you. 57 years old and feeling terrible for 2 years plus. As ET is rare I think it is one of the last things looked for. I started with Hydroxy in February on low dose. Just had it increased as platelets not dropping and symptoms still horrible. The advice I would give is to keep informing the medics what is happening for you. My GP has ordered extra different blood tests to check for other possible issues as haematologist is quite dismissive. Gentle exercise as and when you can. Good luck
thanks, i have not to see the haematologist again until august, i have not even spoken to a GP through this, it was a nurse who ended up sending me for blood tests, it just seems like i will need to just get on with it til August
Oh I do sympathise with you, and can relate to how you are feeling. I have had ET for over 20 years, over the years I have learnt to cope through reducing my work hours. I tend to have more energy in the morning and consequently plan any activity or jobs at this time.I found putting a brave face and trying to soldier on through the fatigue left me feeling really poorly. I do hope you manage to make adjustments, sending you my best wishes, take care
thankyou, although i have been feeling all this for a long time, knowing now i have this is taking a bit of getting used to
You will get your head round it once over the shock of it all and not just a shock for you but family members and friends too, my better days I forget I even have it obviously the days I suffer I don’t but we learn to make the most of those good days!
My way of coping is not to think too far ahead. Just do today, and give yourself a pat on the back for achieving and getting through the day, take care.
think you are right, it feels quite daunting thinking about the days ahead when you are so tired, i will need to try your way of thinking!!
I also thought what I was experiencing was attributed to perimenopause. The only symptom I had before my ET diagnosis was fatigue, which was resolved by Vit D supplementation. Since my diagnosis, I’ve started feeling body aches, tingling sensations, and sleep disturbances. I’m almost officially in menopause, so it’s hard to distinguish whether some of these newer symptoms are from ET or menopause, since their onsets occurred around the same time.
My OB/GYN said the sleep disturbances can be part of menopause but not tingling sensations and body aches. My hematologist says the tingling is likely from ET, partly due to my rising platelets, which were previously managed by having monthly periods. Sometimes I think ET exacerbates the menopause process but when I hear stories from friends with similar symptoms (who do not have an MPN), I wonder what my menopause symptoms would be like without ET.
I am on 81mg aspirin daily and do not think it decreases any of my symptoms. Vit D helps with my fatigue and curcumin helps with my body aches after my runs/working out. Acupuncture seems to be keeping my tingling sensations to a minimum. I haven’t figured out my sleep disturbances yet.
Hope you can slowly find ways to manage your symptoms and help your body feel better.
as if menopause isn't bad enough eh!! am thinking i have both, but most of the things i have had are from the E.T now when i look back, as bobthecob says i think the best way of dealing with everything is a day at a time, thinking ahead is quite daunting just now, am the same with the sleep too and of course not getting a good sleep everything feels worse!!
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