Apologies for a another question but the more posts I read the more worried I get.
Can I ask if there is/was anyone in a similar situation to me please?
My last 7 platelet counts have averaged 1124 but because am 55, a relatively fit non smoker I am just on ‘watch and wait’ I have experienced bad headaches, dizzy spells and some random bruising which my hem knows about. I have seen a professor and hem at Guys in London and a hem at my local hospital.
Thank you for reading and any replies welcome.
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Mich10
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If the advice came from Prof Harrison at Guy's and the team there, I feel sure you can rely on it. However, how long ago was it that you saw them, and what was their diagnosis? Sallie
Yes I’m in the same boat although watch and wait unless I’m 60years old or my count 1100-1399 goes up to 1500. I’m on aspirin. My mobility is poor and getting worse. Due to pain dizzy etc
I am sorry that you are feeling worried, and I do understand. However, we all MUST be our own very best advocates, in my view...
As I mentioned before, we can all be a tad different from one another while also having very similar MPNs...
I am not a medically trained professional at all, and can therefore only relate via my own experiences w/ high platelets and TIAs.
With ET, it has long been my understanding that managing high platelets is paramount to prevention of thrombotic events...
Hence, if I were you, (and clearly I am not), I would be demanding that my platelets were being better managed given the increased risk you have mentioned in relation to your symptoms of headaches, dizziness and elevated platelets over the 1Million benchmark etc...
Before your next appointment, do try writing out everything that is concerning you, and then be certain to raise all your fears, and apprehensions to your medical team.
Hopefully, they might better respond to your needs...
That said, it is not entirely unusual for some people to be just taking aspirin with their ET. However, and in a more generalised sense, they are usually people on the south-side of 50 yo...
Hang in there Mich, be assertive when discussing all your concerns w/ your medical team, and do keep us all informed as to how things progress...
Everything you say makes sense. I don’t think I’m assertive enough and very much rely on what the professionals tell me but not feeling comfortable about it at the moment.
I agree with Socrates and not just because I am a Greek! : )
Firstly, we do have a scary disease, but the more you know about it and yourself and start managing your doctors and illness (educating yourself and watching your symproms and reactions like a hawk), you will start to feel empowered. You will also gain more self-confidence and control of yourself and your illness. In order to get that far, it is necessary to be well informed and advocate for yourself! If not satisfied with the answers and help you are getting, it may be time to move on to the next hemo until you are taken seriously and until there is trust between you and him/her.
I have had 5 TIAs. My third and biggest was at 52 (my first at 49/50) and it lead to my ET CALR diagnosis. I was suffering with all the normal MPN symptoms for years and many doctor didn't catch it! Dizziness is not something to play with (usually thicker blood-which also caused my "low pressure" glaucoma, due to not enough oxygen getting into my capillaries). That has not increased since my treatment with blood thinners and Anagrelid.
Your platelets are pretty high. I had my 3rd TIA at only 823! Therefore I was put on meds immediately. Others are kept off of meds much longer, as long as there haven't been any adverse events. I wish I didn't have to take the heavy stuff. those who can stay off it longer are lucky. I have to take all kinds of vitamins and supplements to work against the nutrient depletion that Anagrelid is causing in my body. All meds deplete the body of important vitamins, minerals, collagen, CoQ10, enzymes, etc. The more you work against that, the better you feel and the longer you will be well.
Bleeding is also not a safe thing! Regardless of my Anagrelid treatment, I hover around 550-600 +/- 150 and take only 3-4 aspirins a week, but I add 3 x 60mg of pure Ginkgo Biloba daily to keep my blood thin. When I had a severe bleeding episode from the nose 2.5 months ago, I was able to stop the Ginkgo immediately and it was out of the body within 9-12 hours. Aspirin keeps working up to 7 days. I was able to go to sleep without fear. My grandmother died of a nosebleed during the night at 57. I was terrified. Mine started after waking. I felt and all of a sudden, my left nostril was running like a faucet for almost 90 minutes. At the hospital, they couldn't pinpoint where it was coming from. My doctor had insisted on me taking the 50mg of Aspirin daily, on top of the Ginkgo. Also, my usual low blood pressure (105/60) had jumped for unknown reasons to 179/95 that morning. Was tht before or after the bleeding due to panic? Who knows?
My biggest problem is that my thrombos jump between 500 and 650/700. I get tested monthly. If I see easy bruising, I leave out my aspirin/Ginkgo for 1-2 days. If I feel a bit weaker or dizzy, I take an extra 50 mg aspirin or two. I can do this, because I know and listen to my body really well and immediately feel well after med adjustment.
As Socrates said, we are all different and we can not receive the same treatment as one another. I am sure that with closer monitoring or yourself and a trusted doctor, also getting to the doctor more often, will help you feel better and more confident. We can live very well and be happy with our illness, but there must be a good plan in place and good symptom management, with a good, caring hemo. Also, I have a good functional doctor and dietician leading me in diet, supplements and detox. This has made a world of differece.
Wishing you freedom from your symptoms and fears! Hope to have helped! Anag
Being uncomfortable within yourself is a normal and healthy response. Sometimes, we can be overly anxious with our MPNs. However, that is not what you are doing here, in my view... You are responding to your known symptoms, and in that sense, you are trying to listen to what your body is telling you...
Keep listening to yourself, and take the affirmative actions that will help you best resolve your issues...
I believe that you are already on the right track here Mich...
I was in a similar situation to yourself. In 2017 aged 54, a non smoker, non drinker, with platelets at 1250 and having experienced occasional events which caused dizzyness, blurred vision, felt like I would pass out, pins and needles in my mouth, couldn't speak all followed by a large headache. However I was already on aspirin for something else. I was diagnosed with ET and they asked me to stop taking aspirin whilst undergoing tests. The symptoms got worse whilst not taking aspirin. I started back on aspirin and was prescribed Peg Interferon. Since being on Peg my counts are down to steady 160. I think aspirin may help you to get by without starting on more serious meds. However , in my opinion, you need to try not to get overly worried. It sounds like you are in good hands. You need to discuss with your consultant your concerns and ask him to explain what his plan is going forward. Obviously if symptoms get worse give them the heads up. Ultimately you want to be healthy and if that can be done without taking more serious meds then that is preferable. I would say Peg has been a great option for me. So if you need to take something then don't be afraid of Peg.
Many thanks for replying. I am pleased your condition is under control with medication and little side effects. I’m already on 75mg of aspirin and yes you are right-I need to relax and not worry so much!
Hi there Mich. They realised I had ET after a cerebellar stroke. My platelets were sitting at 950 at time of stroke - apparently have been high since 2010. I had headaches (put down to stomach migraines) n zig zags. At the time of the stroke I had projectile vomited at the airport a couple of days before in an unusual way and had 3 episodes of keeling to the side just before . Since then I've had odd dizzy spells - but my platelets are now down at 430. I too am 55 - non smoking vegetarian and hill walked, do yoga n meditation. I'm now on hydroxycarbamide - along with. anti clotting meds. But reading here - others have high platelets and don't have this going on. I think Imust have been like that for years too before it kicked off although I wish they'd picked it all up sooner. I know how worrying it all can be and how helpful this place is. I suppose you just need to keep an eye on your symptoms. Any worsening or unusual for you symptoms - get yourself medical attention. All best and I hope you get sorted xx
You are with the leading team in uk for our condition, they are experts in MPN s , They probably consider you low risk as you are under 60 and maybe no other risk factors. Have you asked them why you are not taking platelet reduction meds ?
Everybody is different with these conditions ,
Why don't you get in touch with your specialist nurse and voice your concerns to them. As you can read some things on the internet which will get you even more worried. Which will do you no good .
Because I am under 60, fit and healthy non smoker I am not considered high risk even though I’ve had some unpleasant symptoms. However I do realise we are all different but find it all a mind field. I trust the opinions of the experts which is why I haven’t really question them but also intrigued by other ET patients journeys.
I am in the US and it seems to me that MPNs are treated differently here. I was 52 when I was diagnosed with ET Jak2 and my hemo immediately prescribed hydroxy and anagrelide. At the time, my only symptoms were bad headaches. Over the years, (I’m 63 now), my worst numbers were around 800,000. He likes my numbers under 450,000 so to me, over 1 million would be in the danger zone. Please let them know how you are feeling. My meds have been adjusted many times over the years due to my symptoms and ongoing bloodwork. Hope you get the answers you need.
Noticed you are also in US, where are you being tested? I live in Florida and also travel to Houston ( MD Anderson). Did your headaches go away once prescribed meds? Did you deal with any visual issues, dizziness??
Small world! I’m in Florida, too. Yes, back then, my headaches went away After I started the medication. My numbers then went down to normal (in the 300,000s) and on my own, I stopped my medication and ended up in the hospital for 3 days with a blood clot in my spleen and platelets at 800,000. They put me on baby aspirin, as well. My numbers were never stable again after that, until recently. I’ve always dealt with dizziness and fatigue And sometimes when I have a change of medication or an increase in medication, my headaches come back. Then my body adjusts and my headaches go away again. I progressed to PV about 3 ago, so I also take Jakafi.
Wow, it is a small world. I’m in Fort Lauderdale area. Haven’t started meds yet, platelets are about 600 now. I take baby aspirin, but headaches and dizziness started about 8 mts ago.
Well, I am not far from you. I am in Hallandale. I can’t believe I found someone so close to me on this site which is mainly in the UK and surrounding areas. Who is your hematologist?
I expect you will be getting a range of answers about your concerns based on the experiences we have each had with our MPNs. With ET, PV or any of the other MPNs each person's symptom profile and risks can vary despite having the "same" diagnosis.
The merging research and understanding about platelet levels indicates that your risk could be for either thrombosis or hemorrhage due to the increased platelet levels. It used to be thought that Acquired von Willebrand Disease only occurred when platelet levels reached the mid 1 millions. Recent research shows that for people with Et and PV, this alteration in platelet function is far more common in the 800Ks than was previously known. I think it is also possible that the process for a coagulation cascade can be altered along a continuum without it meeting criteria to be considered a "disease." You will have to work with your doc to determine what your unique profile is. The starting point is a von Willebrand Panel, which will include a ptt/appt - INR test. (prothrombin times). If there is reason to look further into the possibility of Acquired von Willebrand Disease, then there would be additional testing likely to be needed. I actually had to look up what the more advance panel is as my hematologist did not know. Also had to find a lab to do some of the testing as the hematology office did not know who did all the tests.
While my MPN progressed from ET to PV, I am similar to you in presenting with the easy bruising. When I was on an aspirin regimen, I also bled too much, though not at a dangerous level. When I consulted a true MPN expert who looked at my individual profile - he told me to stop taking aspirin s my risk of bleeding was higher than my risk of clotting. My treatment for PV is phlebotomy 0nly. I turns out that I am also hydroxyurea intolerant. The MPN expert doc approaches treatment on a case-by-case basis looking at the unique symptom presentation of each patient. This is MUCH better than relying on a "standard protocol" to determine your treatment regimen.
FYI - this change in treatment approach may literally have saved my life. The MPN expert doc rather prophetically said "you really do not want to get a brain bleed." Shortly after seeing him, I was diagnosed with a hemorrhagic brain tumor that was surrounded by edema. The good news is the tumor is now gone as of June 17 and I am recovering well. Given everything I know now, I will never take aspirin or hydroxyurea as part of my treatment regimen ever again. While that approach may be right for some, it is wrong for me.
I hope you get more definitive answers to your questions and concerns soon. The good news for all of us MPNers is that there is promising research and emerging treatment strategies that will improve our care. However, I have found that it is necessary to take the time to educate yourself about your MPN and to relentlessly advocate for the care you deserve. All the best to you.
Hi Hunter can you call me at 412-779-4649, I’m 68 retired, a pastor, in great health and was just diagnosed yesterday with ET, number is 576, Doc prescribed Hydrea and baby aspirin, I have easy bruising on my hands when I bump something other than that sometimes light headed no other symptoms.
Enjoyed chatting with you today. I hope the information we discussed is helpful. One of the best things about this forum is the opportunity to both share information and get support from other MPNers.
Here are some links to the things you may find helpful.
List of patient recommended MON expert docs. This is where I found Doctor Spivak at Johns Hopkins. mpnforum.com/list-hem./ . You may find someone closer to you, but the docs at Johns Hopkins are terrific. I would feel comfortable seeing any of the docs at the JH MPN Clinic. It is worth the effort and expense of travelling if you need to. JH is very used to patients travelling to see them and even have a concierge service to help you coordinate all the pieces you need to get in place.
Regarding Qigong (aka Gigong), here are a couple of links to where I have started my practice of this healing form. Be aware the Qigong is a very broad term that includes a wide range of different things. The Six Healing Sounds and the 10 Basic forms are just a starting point (but a very helpful one). There is also a very good book to read - The Root of Chinese Qigong. Find a good local teacher (Sifu) if you really get interested. smile.amazon.com/gp/product...
Regarding the information we discussed re. JAK2, here is an old post I copied.
JAK2 = Janus Kinase 2 gene. The JAK2 gene is comprised of a set of alleles. When some of these alleles become mutated, then you are JAK2+ - typically results in either ET or PV. The percentage of the alleles that are mutated = JAK2 Mutant Allele Burden. Speaking broadly, people with a JAK2 burden less than 50% will have a milder course of the MPN. There are a number of factors why this is so. JAK2 signaling drives hematopoiesis (thrombocytosis, leukocytosis, erythrocytosis). It is also thought to trigger thrombosis. Emerging research is focusing on the role JAK2 signaling plays in increasing the production of inflammatory cytokines. The cytokines appear to be responsible for many of the secondary symptoms we all experience.
There is a lot more out there on these topics. Takes a bit of effort to find the information - but knowledge is power and worth the effort. Hope this helps.
All the best to you as you start down this path. There is a lot to learn, but you have the time to educate yourself and make informed decisions about your own care. It sounds like you have good instincts. Pat attention to them and find a true MPN expert doc to help educate you and guide your care. God Bless you and us all.
If you are under Guy’s you are in good hands. Make sure you tell them about your symptoms and maybe even taking meds. They are extremely supportive and knowledgeable.
I did voice my concerns but she just said it sounded like a migraine but offered no reassurance about whether it was a symptom of ET or not? I really like the medical team there but I will definitely be more assertive when I go back in December and ask more questions.
I believe that you need information to question things.I have cut info from the home page of voice.org
How common is ET?
ET is considered to be a rare disease. The number of people diagnosed each year with ET will be between 1.5 and three cases per 100,000 and it is more common in women than men with two women diagnosed for every man.
Diagnosis
You might have visited your doctor to ask about symptoms, or your doctor may have discovered a high platelet count when you had a routine blood test. Your doctor will run diagnostic tests to determine whether you have ET or some other condition these are likely to be done through a specialist clinic run by a haematologist or blood doctor.
Reasons your platelets may be high
It’s possible for conditions other than ET to cause a high platelet count. Your haematologist will need to rule out any other possible underlying causes before making a diagnosis. Some conditions that increase the platelet count include:
Infection
Inflammatory disorders, for example arthritis
Acute or chronic blood loss
Tissue damage from trauma or surgery
Splenectomy (removal of the spleen) or hyposplenism (when the spleen stops working)
Some other blood conditions can cause a high platelet count
Signs and symptoms
Many people with ET do not feel any symptoms at all. Others may experience symptoms such as:
Heart attack or stroke
Persistent or repeated headaches
Bruising and bleeding, including nosebleeds or heavy periods
Burning pain, redness in hands or feet
Gastrointestinal bleeding or blood in the urine
Bleeding from nose or gums
Dizziness or ringing in ears
Itching or other unusual skin sensations
Leg pains
Coldness or blueness of fingers or toes
Vision disturbances or silent migraines
Diagnostic tests
If your haematologist suspects you have ET, he or she may suggest some of the following tests:
Full blood count (blood test): The full blood count or FBC shows how many cells are circulating in your bloodstream. Your haematologist will check your platelet count in particular. Platelets are the cells that help your blood to clot, and if you have ET, your bone marrow may be producing too many of these cells. A normal platelet count is 150 to 450 –– counts above 450 are considered higher than normal.
JAK2 Calreticulin or MPL mutation test: Your haematologist can test your blood to see if you have a gene change (or mutation) called JAK2 V617F mutation. About 50% of people with ET show this mutation. 25-30% have a change in calreticulin and a small percentage of patients (2-5%) show a change in the MPL protein.
Chest x-ray: You may need a chest x-ray.
Abdominal ultrasound: If you have ET, your spleen may be enlarged. This is because in ET your spleen may begin to produce blood cells, and these collect inside the spleen. Spleen enlargement can be checked by feeling your tummy or by an ultrasound or CT scan. The ultrasound is a painless test.
Bone marrow biopsy (BMB): A bone marrow biopsy is a test of your bone marrow that is done in the hospital. You will not need to stay overnight in the hospital, and you will generally just need local anaesthesia. Your haematologist will give you some medication to prevent pain, and then he or she will extract some bone marrow from your hip bone using a needle. The bone marrow tissue can then be examined in a laboratory so that your haematologist can see how the stem cells in your bone marrow are working, and if there is any fibrosis in your marrow.
Risk levels
If you receive a diagnosis of ET, your haematologist may tell you that you are a low, intermediate or high-risk patient. Risk levels are based on a combination of features including your age and your symptoms especially if you have had a blood clot and perhaps your white cell count. Your haematologist will consider your risk level when making recommendations about your treatment plan.
Treatment
Treatment is a balancing act. Patients and haematologists must work together to judge whether the benefits of treatment outweigh the downsides. The goal of ET treatment is reducing the risk of potential complications while keeping side effects to a minimum.
The first step in any treatment plan is to take good care of yourself. Maintaining a healthy body weight and controlling your blood pressure and cholesterol can go a long way towards protecting your long-term health. It is very important to stop smoking. Your GP or consultant can give you more information on how to best to care for your overall health.
In the early stages of ET you may not have any symptoms and you may be considered low-risk. If this is the case, your haematologist may suggest observation. Observation means that your ET will not be treated with medication (other than possibly low-dose aspirin), but that your medical team will test your blood from time to time for any sign of changes.
ET patients who have intermediate to high-risk have an increased risk of clotting (thrombotic) or bleeding (haemorrhagic) events, so the first goal of treatment is to reduce the likelihood of these events. Haematologists can use a number of different drugs to treat ET. The following treatments are the commonly used to treat ET, read more about them in our Treatment section.
Medications to reduce your risk of clotting
Aspirin
Warfarin
Therapies to reduce your platelet count
Hydroxycarbamide
Interferon alpha
Anagrelide
Busulphan, melphalan or phosphorous
Plateletpheresis (removal of platelets)
JAK inhibitors
These are agents currently under intense investigation in this field. Ruxolitinib or Jakavi® was the first to be investigated and much research continue
Mich I know this looks daunting read and hopefully the answer you seek is in it.
Hi again, Is the professor at Guys Dr. Claire Harrison? If not, why don’t you see if you can get an appointment with her? She’s one of the top experts in the world. Then you’ll be able to feel confident that the advice is the best. I’m from the U.S. and not familiar with UK medical practice. But in the US you can go to a top place & be assigned to someone for an MPN who isn’t as knowledgeable as the top experts in MPNs who are also at the same hospital. That’s what happened to me. I went to a top place in the US and was assigned to someone who didn’t specialize in MPNS so I requested to be transferred to a specialist. I had to explain why I wanted to switch &both docs had to agree. But I’m glad I switched. The reality is that unless you can be confident that your doc is extremely good with MPNs, it can be very hard for some of us not to be worrying. If you can’t be seen by Dr Claire Harrison, perhaps you can get your doctor to consult with her. That’s done in the US. I’m sorry you’re worried but I would probably be too. The fact that what you’re experiencing may be “common” with ET doesn’t mean it should exist when ET is well controlled. Please keep us posted. Katie
I’m in Sarasota, Florida for 6 months (winter) and Wisconsin the other 6. I used to go to MDAnderson but once Dr Verstovsek found out I also see Dr Komrojki at Moffitt he said there was no need to make the long trip to see him. These doctors work on many research studies together & Dr V has great respect for Dr Komrojki. I think he’s fabulous. I’m also very stable though. Are you stable now? And where do you live? Katie
I’m in Fort Lauderdale area. I see Dr V, and (Dr Fu at clev clinic hospital locally). Not on meds yet, platelets hovering around 600, but currently struggling with dizziness, and fatigue at times.
Hi. Sounds like you have a great medical team. Could your symptoms be related to the high heat & humidity? And have you contacted your GP? It’s easy to think are symptoms are related to our mpn but it’s important to check with your doctor to see if it’s something else. Let us know how things turn out. Katie
Please don’t apologise for asking questions. Most of us are in the same boat and we all need a bit of support sometimes.
I have not Met Prof. Harrison at Guys, but I hear she is one of the leaders in the field of MPNs.
May I suggest that you write down all your fears in a list, and then write a letter including them. You could start by saying that you are really worried and you need some support please. If you are not seeing Prof. Harrison, you could still address the letter to her and ask her what she would suggest. I have seen her speak amongst the experts on the numerous videos that I have watched on MPNs. I feel sure that she would answer your questions for you.
I am 72 and have ET Jak2 +. I have had two minor strokes and am considered high risk.
My meds are hydroxycarbamide, baby aspirin, lisinopril,
Simvastatin and omerprazole.
I still find I am walking sideways on occasions and get very light headed. My feet and hands tingle and the sweats and itching at night keep me awake. The headaches can be severe, but I do find that if I drink two and a half litres of water a day, they are almost non existent. About once a month I have a vomiting session and I am not sure, but I think it is the build up of the cocktail of drugs.
I am not a medical professional but I am with the other people on hear and think that with your high platelets, you are within your rights to ask for some additional explanations and advice.
I hope someone can put you mind at rest and your symptoms ease really soon.
Your platelets seem quite high to me but everyone is different and your consultant should know limits and what is best for you.
I have had ET for 19 years, diagnosed at 49 by a random blood test for cholesterol with no symptoms. Was on Anegrelide for a couple of years on a trial but the advice was to then switch to Hydroxy Urea, now called Hydroxy Carbamide. My platelets have been between 430 and 560 for most of that time and I have always resisted increasing my dose, 2 caps one day 3 the next, which is high enough already. They like me to be under 450 but different centres have different guidelines
I have virtually no symptoms other than tiredness but it does not stop me from doing anything really.
I keep myself pretty fit (used to run a fair bit now gym, golf, gardening etc.) and I think this helps.
Hope this helps you and any other newly diagnosed ET ers
Australia. Was watch and wait for 10 year. Which i was happy with. Don't like meds. Just lifestyle changes.
But then i got lazy with my nutrition and exercise and started getting cramps in spleen, greater fatigue etc. So agreen to go on Hydroxy. No issues so far.
I am now 66, but was diagnosed with ET in my mid forties after suffering several episodes of vision loss migraines. Platelets were 1200 as far as I remember. I have been on interferon alpha ever since, some 20 years now. Platelets are around 160 and have been for many years. Only had about 3 vision loss migraines in the last 20 years since the platelets have been controlled. Regards. Tim
Hi I’m 49 and take 3 hydrox tablets a day. Just because my platelet numbers reached 1.7 million . diagnosed with PV 6 years ago . I live in the US(NJ).
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Advice please, for travel insurance with ET.
ET and Pernitious Anaemia help please
ET
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