hi everyone I’m very new to all of this. Recently discovered high platelets albeit only 465. Have been referred to specialist for testing who has said suspects ET. I have slight itching on arms (intermittent) ringing in ears and also separately have anxiety and high stress. I am 46. Any helpful comments much appreciated.
help!: hi everyone I’m very new to all of this... - MPN Voice
help!
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Carthe
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Hello and welcome to the forum. This is a great place to find support managing a MPN. You are just barely over the 450K limit for a diagnosis of thrombocytosis. it is yet to be determined if this is a primary or secondary condition. Note, that anxiety/stress is a cause of reactive thrombocytosis.
Another thing to know is the while ET is a blood cancer, it is best thought of as a chronic condition. it is cancer with a little "c", not cancer with a big "C". Most people with ET will live a normal life span.
I was diagnosed with ET 30 years ago. It progressed to PV about 9 years ago. I have lived a rich life while managing the MPN and at age 67 continue to do so. I have never had a single incident of thrombosis. I have experienced some of the secondary symptoms we can experience with MPNs. These have all been managed successfully.
If you are diagnosed with ET, please know that this is a condition that can be successfully managed. Treatments have improved greatly and options continue to improve.
Wishing you all the best.
hello and firstly thank you for replying! I’m very grateful (especially on a Sunday!!) I’ve had the highish count since September (doctors misplaced the results, so have just found that bit out) and also a couple of the ‘other’ symptoms - itching, tingling hands and feet and ringing in ears but I put it down to perimenopause!!? It’s only after speaking to the consultant today that he said that’s what he thought it was and suggested the blood tests and put it on the form etc…. (Suspected ET) he said my haemoglobin was a bit raised too at 150. I do suffer with anxiety so asked if stress can caused raised platelets he said not!? Anyway I am so grateful for some positive input. I have already started planning my funeral and with two young children you can imagine it’s not been the best end to the weekend! Xx
That is a really common response when first hearing you may have a MPN. The best thing for planning purposes is to start planning for your grandchildren's birthday parties. Those are really fun! Plan to be there to enjoy them.
amazing answer Hunter!! I second that!! 😁
that a wonderful answer… I would say yes to that too …
I couldn't agree more with Hunter. Plan for your future. Don't be scared of the condition. Good luck with any treatment. Given your age, you may get away with a small aspirin each day.
Indeed Hunter what a brilliant answer that is. Reassuring and cheering on as always.
It is hard to get your head round i know, but truly take on board all Hunter has said because you cannot better that. Sound advice.
it took me years to come to terms. I’d try to fight fatigue then get upset when rendered useless.
I was 60 when I retired.
So here are my tips.
No need to plan your funeral.
Cut down on your work load.
Your family life comes first.
Look at short cuts you can take, ie pretty flower beds- change to lawns.
The best piece of advice I read was if you can be afford it get help around the home wether it be a cleaner/gardener/ironing.
I do know that PIPS (Uk)has been granted to some people but it’s difficult to get.
Please don’t waste your time getting upset for years like I did. I know it’s a huge shock to the system and you are young too.
Contact mpnvoice.org.Uk , they are brilliant. They’ve just set up something for young patients.
Sending reality hugs
Such a great answer! I was so freaked out at first, but I think that was the beginning of the pandemic related and the fact that I felt so sick. Once I got a grip and figured out solutions for most symptoms, things got much better.
If my kid wasn’t going off the rails, I’d probably be quite happy right now. 😭
I’m hoping I have at least another two decades ahead of me. I’m 52.
Your consultant really should have reassured you about this and not let you go home thinking that you needed to plan your funeral. ET, although technically a cancer, is not life shortening as long as it is managed properly. MPNs used to be called blood disorders, which obviously sounds much less scary. So when I was diagnosed in 2001, it never occurred to me to worry about dying from it. MPNs were reclassified as cancer in 2008, which was a good thing because it attracted more research (and enabled us to get free prescriptions), but it does make them sound terrifying. ET really doesn't need to be terrifying.
Hi Carthe,
I’m late 40s, was diagnosed a year or so ago, and can relate ever so much to what you have been going through. I echo Hunter’s replies. As shock moves into understanding and a treatment plan develops, anxiety drops and symptoms with it. I’ve found that taking positive actions within my control have made a big difference and that when I have a concern I can safely air it here.
Have a good day🌞
thank you - I keep seeing about a 20 year max survival and I’m petrified 
Well I’ve had ET for 36 years and I’m still here so I wouldn’t worry too much about a 20 year survival rate x
that’s because those diagnosed are more often over 60 to begin with. There are some here who are well managed and were diagnosed 30+ years ago. There are also exciting new therapies coming up. 🙂
From my records, my MPN started in 2013 when I was 42 . I had no symptoms until spring 2018. I’m a decade in. That actually comforts me.
thanks and do you recall you symptoms / numbers then?
Headaches, itchiness, red face, fatigue. I felt very sick.
Platelets at about 700. Normal hematocrit, but elevated white blood counts. That’s why I was diagnosed with PV and not ET. Now, I’m turning into a classic PV case with rising hematocrit.
I was just as anxious as you. Getting diagnosed in January 2020 was no fun. By March I was stuck home terrified. This place was my lifeline and support. There’s so many wonderful people here who have been where you are and are living full lives.
same here. My symptoms were brain fog, dizziness, tingling legs, tingling, and painful fingers, histamine, intolerance, depression, difficulty sleeping, ocular migraines, headaches, veins, showing in my temples, and popping out on the top of my hand, which I never had before. Redness in my calves, and feet. These would go up and down and I’ve noticed that every blood test I’ve ever had around me June is when my thrombocytes are the lowest usually 2 to 300,000 less than average in The rest of the year. Would love to hear your symptoms.
I was absolutely falling apart. I had terrible headaches. I forgot about the spontaneous bruising as that seems to have resolved. I looked as sick as I felt. It is amazing how much aspirin helped me. I’ve tried a ton of different things and have improved my life and symptoms quite a bit. My current quest is to find a solution to fatigue. I’m going to write about what I’ve done soon.
I didn’t like my hematologist much, but now we get along. She is incredibly supportive of my trying supplements and diets, etc as long as I keep a journal of what I try and symptoms. It has been fun experimenting.
dear Lena, I’m so glad you’re feeling better!. I found a wonderful solution to fatigue and made it a thing of the past. I not only have energy but I’m able to hike two hours in fast tempo up and down hills in the woods of Vienna. two years ago, I was a wreck, dragging myself around.
I take coenzyme Q 10, 100 mg every morning. I prefer the CoQ10 complex from Terranova. I’ve tried a lot of them, but this is absolutely the best and it’s organic.
I also take 500 mg of acetyl l-carnitine before lunch and 500 mg around 3 PM. When I started to fix my fatigue, I was taking 1 g twice a day instead of 500mg. It is possible to take up to 3 g a day but I started with 2 g a day and once I got strong enough and was able to build up some muscle again (took about four months), I reduced down to three capsules of 500 mg and eventually just two capsules a day and that’s enough for me know. When I do power hikes, then I take 1 g before I walk.
the CoQ10 helps the mitochondria in all cells function better and the acetyl l-carnitine helps the cells use our nutrition more efficiently! there is no feeling of any rush or nervousness at all, as with coffee. Once you move or exercise or clean the house, all of a sudden you have more energy. 😃😃😃
It’s worth a try.
Hi, sounds as though you are having a horrible and frightening time. You’re def in the right place here. I was diagnosed at 38, I was terrified and like you I was left hanging with not much info until the tests came back positive. It’s a very scary place to be, especially with young children, mine were 4, 6 & 8. I, like you, started planning my funeral, made a list of each child’s favourite and least favourite foods so my husband would know…asked my husband not to find a new love until kids were older….I was doing all sorts of weird stuff and was excruciatingly stressed and anxious. But, (and this is important), I now know and understand that all the fear was there because I didn’t know what was happening. It was a reaction to the lack of information I had on what was happening to me at the time. Information is key and you will get it, if you don’t feel you’ve got enough ask for more. This is a fantastic forum for immediate support, up to date info and different coping strategies. As Hunter says above MPNs are conditions that we live with and we can live really well and long. I live a very healthy and very full life, I do have some of the side effects that ET brings but I have worked out how to live with them, they are here to stay so have to be acknowledged and catered for. If your tests come back positive for MPN and you need to chat MPNVoice has a very good buddy system, you get paired with someone who is in the same situation as you. If you are in the UK MPNVoice also run several in-person forums around the country yearly, definitely worth going to if you can. Your platelets are not too high, try not to panic. Keep in touch and remember that we are all in this together x
The inhumanity of so many doctors is astounding. I know they are taught to be tough in order to get through their work without getting involved emotionally. I was married for two months in my husband had testicular cancer! I asked the doctor what he sees in the ultrasound, and he called Lee said a tumour. I asked where is the testicle and he said there is no testicle just a tumour. He continue to plan the operation for two days later I was frozen holding my breath and my husband was panting.
when I asked questions, he ignored me completely. Finally, I demanded him to answer my question. I wouldn’t let him continue if he didn’t. He turned to me and threw a bunch of medical jargon at me, and I insisted he explain. My husband was not able to talk!
same thing happened to me with my diagnosis. I’ve written about this before. my teenager was threatening suicide. I spent 1,5 hours wandering around the halls of the hospital, crying myself out, and eventually being able to breathe and put a smile on my face in order to walk through the door of my home. It was many months later that I told my daughter what was going on after I knew what was really going on. 50% of a therapy that’s successful is due to a good doctor-patient relationship!!! 🙂 always look for such doctors and hang onto them!
dear Carthe,
you will be absolutely fine! I went through a few months of terror and alternating depression and apathy. I finally found health unlocked and I found so much unconditional support, help and information! I also have very good natural doctors who help me fix my body in so many ways and I am healthier now at 58 then I was at 40! My illness started about age 45. Just like you. I am on the auto immune Palio diet. I have banned almost every single chemical from my home and off my plate and off my body. I also detox every week through my food and through different supplements I balance out all my vitamins and minerals and enzymes and hormones.
I was diagnosed at 823,000 thrombocytes! Even though my blood was continually being monitored, my university professor Dr. and friend failed to believe that I could have something serious even add 758,000!! She said it was some infection. In the meantime, I had three TIAs and no one believed it. All doctors thought it was from my slipped disc in my neck.
my advice to you is to educate yourself as much as possible, without drowning, in information and to get yourself a healthy lifestyle regarding sleep food exercise. Get away from GMO’s away from pesticides and food additives away from detergents that are not biological organic. Trying to get rid of any amount of inflammation in your body. Make sure your CRP is under 1,0!! Anything above that chronically it’s not healthy! Low-grade inflammation is long time Disease.
I only wash my clothes with with chestnut that I myself pick off the ground hand, oxygen bleach for the whites. My whole family and friends have folloed suit and we are all healthier and more beautiful! I wash everything in my house with vinegar, bicarbonate of soda and a tiny bit of shampoo in my cleaning liquids that I made myself adding tea tree oil to kill, germs and lavender and other essential oils for a fragrance and good feeling
I have even been able to reduce my thyroid medication for Hashimoto by 60% in 4 years by fixing my immune system, and changing to buy identical hormone!
after 5 1/2 years on this road to healing myself, I have reached the point of finally cleaning out the trauma that has been plaguing me all my life, causing me to live under enormous stress and anxiety, my whole life.
a great way to get rid of anxiety is taking Passaflora drops when it’s necessary. For long-term treatment and clearing out the psyche and reprogramming the body to be quieter and healthier in spirit I do tapping, Nick Ortners method. My faith is also very important to me so I pray often and go to Bible study once a week. Knowing who you are and why are you are here is so important for a sound mind and spirit you have to find out for yourself. 🙂 be focused on what is really truly important in life!
I really hope that this will help you and be prepared to start on a journey to a new life. Every challenge is there for a reason! Use it to become a stronger, happier, more content person! This is a fabulous forum, and you will meet some amazing people here! I never cease to be astounded by the love support and readiness to help from our blood Brothers in blood sisters!
Welcome!
Anag
hi I’ve enjoyed reading your post and think about how you’ve achieved 60% reduction in your thyroid medication
That’s amazing!
vitamin D 50-60,000 IUs weekly. An optimal parameter should be 60-80 or even higher if there’s a heavy illness. Selenium (I eat 1-2 Brasilianer nuts daily). Iodine (liquid). One drop smeared on the skin daily. If it disappears in 10-20 minutes there is a definite. If it stays for much longer, the body has enough. 🙂
These three nutrients are soooo important for a good working thyroid.
amazing response thank you Ang. I’m going to digest this and make some changes. What do you recommend re supplements? Garlic? Ginko? Fish oil? I would welcome your thoughts on this.. x x
I chop up 2-3 garlic cloves and throw it onto my veggie stir fry every morning. Parsley to get rid of odor! 😁 I have tons of really good organic olive oil. 3 people in family, we go through one 750ml per week. Because we don’t need eat any greens accept a little rice. We need a source of energy and that is oil and good fats. Since this change, we no longer have cravings for sugar or carbs, and our body uses fats for energy.
We take Norsan salmon oil, which I believe is the safest, freshest source. 1 Tbsp morning one in Eve. If capsules, prick a capsule out of a new package and taste to make sure it not rancid!!! Many capsules contain old, rancid oil and do more harm than good.
one or two excellent magnesium tablets, or capsules a day, coenzyme Q 10, 100 mg, about 1000 mg daily of the best source of vitamin C, zinc, acetyl, l-carnitine for energy,
for most of the time I do not take 100 mg of aspirin. I do 50 mg of aspirin in the morning and 120 mg of Ginkgo at night. I usually know if my blood is too thin by purposely, cutting my gum with floss to see how long it takes for the bleeding to stop. Sometimes I get off the buffered aspirin completely to give my small intestine a break and do 120 mg of ginkgo a.m. and 120 mg of ginkgo p.m. Gingko stays in the body for about 9 to 12 hours. Once I had a horrible nose bleed, which wouldn’t stop for over an hour and ended up in the hospital. It was very easy to just stop the ginkgo.And I was not afraid to go back to sleep at night in case a nose bleed would start again. If I had been on the aspirin, it would take several days to put me in the safe zone again. Others on the forum have written that they bruise all the time and the doctors don’t reduce their aspirin and take. We are also different every single one of us. It all depends on if we’ve had thrombotic events and TIAs.
if we keep a close tab of what is happening to our body and listening for symptoms, then we know what to do, we are empowered and fearless.
vitamin B three niacinamide is also really important and basically a really good B vitamin complex! Please stick to really really good supplements that are natural without any other additives! The bio availability is extremely important. If you buy cheap supplements very often, they get washed out of the body with very little uptake.
😉
Nothing to add to the great advise above from everyone.
Just welcome . It really is such a comfort to have our blood brothers and sisters to turn to . ( love that phrase Anag ) !
No question to small or ‘silly’ too post
Best wishes to you . Hope you find out what’s wrong soon so you can work out a plan ..
Hi, I can really empathise, I was in a similar position 2 years ago. I was 45 when I was diagnosed and my platelets were hovering around 500 so not hugely out of range. Plus a few perimenopause symptoms thrown in for good measure, it was a stressful time. Waiting for the test results was the worst part - when you have some answers you can start to get your head around it and please know that if you are diagnosed with ET, it is a manageable condition with lots of amazing support from forums like this and MPN Voice charity. Wishing you all the best and let us know how you get on, we know exactly how you are feeling xx
Perimenopause plus a MPN plus a kid that’s taking teenage angst to new heights is a cocktail I don’t recommend. My husband told me last night to plan a trip away just for myself. ❤️
thanks Lola what extra symptoms did you have? Where there any other funny blood results or just platelets?
I had occasional migraines with visual disturbances, tingling and numbness in fingers and toes from time to time, also brain fog but am pretty sure that is partly due to perimenopause. All my other blood counts were normal apart from platelets.
I had many visual disturbances in the form of ocular, migraines and flashing lights. They started when my ET started. After doing so much for my body, I haven’t had a single one in three years. Also no headaches or nasal infections or eczema or histamine intolerance, which were plaguing my life for many years. 😁😁
Never assume things are due to menopause. Many of the symptoms overlap. It’s important to stay open to all possibilities in order to make proper choices of treatment.
I am finally starting my bio, identical female hormones: oestrogen and progesterone, tomorrow. I can’t wait for these horrific hot flashes, itchy, sensitive, and painful skin and brain fog to stop!! 🙂
how are you now and what is your medication?
Hi. My experience was also similar. Feeling stressed, tired, tingling and itchy after showers and just assumed it was peri menopausal. Sore legs at night from standing all day, stiff neck and headaches. My first few blood tests showed high platelets only and after a Bone Marrow Biopsy ETwas confirmed. ( 2 days before Christmas, I was crushed with 3 teenagers and a busy business). Weeks later the reds started running and my new MPN specialist said you meet all the PV requirements. ( great PV has less of a life span according to Google 😱). Long story short - I still plan on being here a very long time! I changed from the regular hematologist to an MPN specialist, this made such a huge difference. I also had my daughter diagnosed with ET and that diagnosis sorted out a few issues with her also. We are both Jak2+ which is very common in these circles. She is doing amazing now with only baby aspirin and no more headaches).
I started with baby aspirin and months later phlebotomy’s became my new normal. As I started feeling better and learning more about our new conditions I talked to the Specialist about Pegasys- 1 needle / week, older drug used to treat Hep B years ago but has a marvellous side effect of reducing blood levels in patients. I have been taking this needle faithfully for almost a year now and feel wonderful. (Bloods all normal )Brain fog lifted, started to feel good after each phlebotomy but now the medicine is in control and no more phlebotomy’s. 🥂. I do get a crazy skin crawling under the skin itch from either the disease or the meds sometimes but I manage it). I like to pretend it’s the medicine conquering the Jak2 in me so I have learned to just acknowledge it and adjust my day or night and move on.
Some of my inspirations are watching how others overcame health issues like Dr Terry Wahls ( you tube or podcast her remission of MS with diet and exercise), Dr Joe Dispensza and dealing with our thoughts- ( lots of podcasts and you tube or read his books) and relaxation in the app Insight Timer ( there are many similar types). I will add that if you go to your local library and get a library card you can download the Libby and hoopla app for free and walk and listen to audiobook with some amazing authors. You can read the books and look at all magazines too.
You will find that unless you adjust your thinking to a more positive place you will continue to be controlled by the negative. Accept you have an health issue, get the best help and support jn you journey and change what you can so you and your family thrive 🥰.
I read all the posts and try to respond to people in similar circumstances. I searched many topics on this site. Knowledge is power. It has been amazing. I spoke with many amazing individuals with ET for 30 or more years and decided quickly that this diagnosis was not going to be the end of me. I adjusted my thinking, my health and putting myself and family first. I am healthier, happier and stronger and up for the challenge of living a very very very long and full life. Get your support around you, find some inspiration and take yourself to a more positive future than the one you googled.
I was diagnosed in 2020 and am thriving now. At 54 I feel great ❤️
Best of luck to you. 🍻🍀
you’re just like me! Bravo!! A real go-getter and you’re listening to great doctors who bring empowerment! I’m so glad you’re doing so well on Pegasus. I just started Besremi last October. It slow kicking in, but it’s working and I feel so much stronger than on anagrelide! My heart palpitations, alternating high blood pressure, and fatigue, an hour thing of the past. 😁🙏. Perhaps you can get Besremi as well! It’s only necessary to give yourself a shout every second week and eventually once a month. 🙂
Hello, just wanted to mention it's always worth checking B12 and thyroid levels when you have anxiety symptoms. I have wasted a lot of years while medication could have helped.Welcome to the forum,it is scary when diagnosed but there's lots of good advice here. Ask questions and be confident,my GP thought I was making a fuss wanting to see a haematologist.
Good luck
You are so right! We have to advocate for ourselves and be well prepared for every single doctor’s appointment. Most of us write everything down before we go there so that we don’t forget. Once I change to an MPN specialist, it made a huge difference. Most GPs don’t know anything about our illnesses and the haematologist are a bit better but the specialist are the ones that really bring us further with proper treatment. 👍
Hi & Huge Welcoming Hugs from from us all x
I was diagnosed with ET a few years back.
Am currently on aspirin & interferon. Blood has been fine since I started treatment.
There really is nothing to worry about imo.
Most of my lovely peers here have covered everything.
Be assured, if you need any advice or help we’re all here alongside you👍
I see you have already received a bounty of replies. I am 1 month away from 72 now. Was diagnosed with PMF about 6 years ago. Fortunately for us we were able to obtain a Hematologist with a Specialty in MPNs at the beginning of this medical journey. For us a big part of living with an MPN has been Quality of Life. Treating the symptoms not the disease. We do a weekly blood panel and are able to monitor how our medications are effecting us. Although most recently more studies are being done on treating the disease with a means other than Stem Cell Transplant. I have heart disease as well as an MPN so this and my age may put us out of this realm, but we believe that our medical team will see us thru for a good number of years. I am very fortunate to have the support of a caring partner. She is always present for all Telemed and one on one doctors meetings to record and suggest. Very important.
Hi Carthe,
I just wanted to share my story with you because I can imagine how you feel. I will never forget the feeling when I found out I have ET at the age of 27, right after I had my first baby.
It was scary at first but I can tell you that ever since I found out about it I started living my life and I have never been happier before. I had changed my eating habits. I fell in love with Mediterranean diet which is low inflammatory diet. I started to respect my body and my health. I spent more time outside, trying to stay active. If you can afford try buying organic products, eliminate processed food. Supplemet with magnesium and vitamin b complex. I had very high anxiety before and I strongly believe that stress and anxiety had a huge impact on me getting this condition so early in life. I found a great holistic doctor and he advised me on how to supplement my diet to balance the hormones and neurotransmitters. I stopped getting migraines. I am taking baby aspirin daily. My quality of life has only been improved and big part of it is me being aware of having the condition because now I actually take a better care of my body. Recently I was even approved for life insurance at a fairly good premium rate which actually made me realize that it must not be that bad 
Good luck to you and I am sure once you take a good care of your body you will only notice improvement in your health.
thanks karolina I really appreciate your support. Did you only have raise platelets? Some of my red bloods are raised too / or at least higher than the others and I’m confused as to why the Jean just said et and not Pv too x
Hi Carthe,
At some point I had WBC elevated without any other reason. They do go up and down sometimes and the doctor said this is common with ET. So far RBC are within normal limits. Do they want to do bone marrow biopsy for you? My fist hematologist did not want me to have it as he said I’m stable but when I moved I switched to a different hematologist and he did it to confirm that it was ET.
they haven’t said - I would rather not have one if I’m honest! I seem stable also very slightly about the range so just not sure. Did you bloods not come back to show ET?
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