Don't assume every health problem is caused by your MPN. To cut a long story short, at the end of September I had vision issues and and didn't feel with it. Haematologist ordered another blood test at OP appt a and said it was high platelets and increased hydroxy to 1000mg a day. A couple of weeks later I felt worse and rang nurse who also said it was probably high platelets and would arrange for me to go in the next day. However, I was blew-lighted to the same hospital late that night having become more unwell on the way home from shopping! Strangers had called the ambulance and after various scans it turned out to be a slight bleed on the brain and I spent a few days in hospital on the stroke ward! I have been taken off aspirin and statin and BP meds increased. Why isn't BP checked at OP appts? I am house-bound at the moment but manage to potter around indoors with a stick. It has taken me ages to try and write this as I am still not quite with it!
Greetings to you all, V.
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Cindy12
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Very sorry you have had such a hard time getting the right diagnosis and treatment. You are absolutely correct that BP should be checked every time. My hematology appointments every 6 weeks always start with weight, BP and heart rate before I ever meet with doctor. I also see cardio every 6 months because of side effects of taking HU and then anagrelide. Been off of them for over a year and just now getting cardio back to normal. Then there's also every six months with eye doctor because of potential side effect from current treatment of peginterferon. I am grateful for having access to excellent medical services. I hope you will receive appropriate attention to your situation. Have you been in contact with an MPN specialist? They have quite a wide range of medical expertise and a safety net of other specialists when needed to be brought in. Please be safe and keep speaking up for yourself. You are your best advocate.
Sorry to hear about the bleeding event. Glad to hear you are back home and able to potter around. Much better than being in the hospital.
I had something similar happen when my platelets were higher and I was on aspirin. I had a brain tumor (not related to the MPN) that had bled internally. This type of tumor normally does not bleed. My MPN Specialist had warned me I was at risk for a brain bleed due to the aspirin due to age > 60 two weeks before the tumor was found. It is worth noting that if your platelets were very elevated, the that would increase your bleeding risk as well.
FYI - Every doctor I go to and even the dentist check my BP at the start of every appointment. I also have my own sphygmometer and check it myself at home. Given your situation, I would definitely get my own sphygmometer to self-monitor.
Thank you for all your replies. S orry I haven't been able to reply to you all yet but it takes me so long now. Yes, I do have a BP monitor, but wrongly put my symptoms down to blood or hydroxy! In fairness to the haematologists they are deputising for my consultant who left about a year ago to live in Australia! One of them rang me yesterday and is contacting my GP in the hope of arranging a home visit for a blood test.
I also have my own BP machine. If you do get one make sure it is of good quality and the brand recommended by your GP.
Before I do my BP I lie down for 5 minutes then take and record 3 readings each 5 minutes apart. The lowest of each reading dia/sys/pulse is recorded on the chart. Generally there is only a couple of points between highest and lowest readings. If I am concerned I phone the GP surgery for advice. Readings are taken at least twice a day, more often if I am feeling unwell. This gives a far more accurate and consistent reading than when done in hospital when one is rushed and stressed or has white coat syndrome.
hi Cindy. Sorry to hear about your recent mini- stroke . Good that you are now home and hopefully you will make a full recovery. Did you by chance see a physio whilst in hospital and have you been given an outpatient referral? Having the correct exercises can help you with your mobility and improve it where possible. If not your gp should refer you, but may need a nudge from you.
As others have already said , definitely get a BP monitor for home use . Very sensible idea.
Do you live alone? If yes, do you have a family member, a good friend or neighbour who can check on you daily? I have some single friends who daily call each other or send a msg (just incase something happens) to check they are ok.
It was interesting to read the countries of those who replied. Seems if you live anywhere except UK, you are more likely to get the additional tests, like BP. Maybe worth having a discussion with your GP if you can have yours checked regularly by the nurse, at least for a while, say the next 6 mths. Having better regular contact with your gp practice in this way helps if you then have any further odd symptoms .
Good they have taken you off statins, as these seriously impede your bodies ability to repair itself, especially blood vessels .
Hopefully they did a full blood test including vitamin levels . Would be interesting for you to get a copy of this to see if there are areas that you can improve with supplements, with the aim of optimising your general health .
Wishing you all the very best for a speedy and full recovery.
Yes, I did see a physio in hospital and they made sure I could cope at home before being discharged. I have had another visit at home and am waiting for another to come and assess what aids might be helpful. I have also been referred to the Stroke Association. At 91 I thank God that so far I have had a good and happy life in spite of MPN and hydroxy. There is life after diagnosis!
I am so sorry to hear about your health issues and I am glad that you are now home. It must have been so scary. Thank you so much for sharing as I was unaware of Asprin/ high platelet’s ability to cause bleeds on the brain and other complications. I never take my blood pressure and my MPN specialist has never taken it either. I am only in the 700/ 800s with my ET. I just wanted to thank everyone like you who have helped to educate me so much about my condition. It has made it less scary being informed. THANK YOU!
Good luck with your health journey and get better quickly Cindy12!
Your hematologist should monitor you well, as brain bleeding can very well be due to your MPN. There are several mechanisms via which this can happen, and your hematologist should stay on top of the issue and investigate.
High platelets, especially over 1 million, can cause bleeding via acquired von Willebrand syndrome. JAK2 mutation can also increase the risk of acquired von Willebrand.
Aspirin in people older than 60 can also increase the risk of internal bleeding.
Some people with MPNs, especially ET, but also PMF, might be prone to bleeding due to dysfunctional platelets.
High blood pressure is not healthy, but alone it might not be the cause of your bleeding in the brain.
Sorry about what you've gone through. I personally am not impressed with most doctors but have been fortunate to get a couple of excellent doctors. Because of this I take my own blood pressure every day at home. At my age - 77 - it's one of the health indicators I rely on. The other item I added is an Apple watch that gives me an accurate pulse reading during the day, especially when I'm doing something
And I have just been discharged from a couple of nights in hospital where before I was admitted, the doctor in A & E (or wherever it was the ambulance took me) said I had an inflamed, infected gall bladder (I was jaundiced), and that my pottassium levels were sky high, in other words, life threatening. I also had pancreatitis and he said all of this was most likely caused by my blood cancer.
After many hours, I got taken to a ward where, in the morning, I saw a consultant who disagreed that my condition was caused by blood cancer, and then a young doctor who didn't even know his way around the town told me he had looked up MDS and MPN and that he intended to inject me with extra blood thinners while I was an inpatient, my baby aspirin not being sufficient, because of possible blood clotting. My, how they like to meddle when they don't have the expertise of the patient. I refused the hyperdermic, and the nurse in charge seemed to back me up.
Anyway, my diagnosis is cholecystitus, choangitis andpancreatitis. No visible gall stones, normal WCC count. They seem very anxious to remove my gall bladder at some point and my discharge note says that safety netting advice has been given. It wasn't. I was told only that while I was in hospital I should eat and drink whatever I wanted (strange thing to say). I do take on board that I need to drink more fluids, but other than that, no-one ever discussed my lifestyle with me. I haven't done anything to cause this, and I suspect it's transient; I just have to make sure I don't clog up my arteries, I suppose. I don't drink or smoke - just the odd drink at my partner's military dinners, don't eat dead animals, hardly ever any junk food and try to keep away from processed stuff. I have to say though, I was researching air fryers last week before I got the stomach pain and vomiting, and it has made me even more determined to order one. My partner is being discharged tomorrow after a long stay and I think an air fryer would enable me to rustle up quick meals for him without having to cook for myself when I'm not hungry, and then I can take care of myself at high speed later.
My point in writing is just because the first doctor blamed the blood cancer. So it's all down to what people believe at the end of the day and doctors think they are little gods who can tell you anything and you will have to believe them! Scare tactics. I have never had an illness like this before, but I will never assume that I will "just get over it" ever again. Had I left it much longer, I could have died. I thought I had 'flu and that my back pain was the result of that (I have seven compression fractures, so it doesn't take much to bring on a flare). I am grateful for the pain killers they drip-fed into me with the antibiotics and serum, but omg what a wake-up call. A little bit of hyperchondria wouldn't have done me any harm!
Sorry that you too have had a health scare and I hope you are feeling better. I also have gall stones, one is over 13cms and I was referred to the surgeon. I saw him in May and at that time my platelets were stable. He left it to me to decide whether to have surgery or to manage it as I have been by avoiding fatty food. My circumstances have now changed so surgery would be out of the question and I have cancelled my next OP appt. I wouldn't have known I had them but for the scans I had to check my spleen!
Hi Cindy, Thanks. I am feeling much better; I've been falling asleep over my laptop for weeks and just put it down to blood cancer but I've got loads more energy. They gave me antibiotics, just in case I had any infection, and painkillers. I also had more fluids while in hospital. They phoned me today wanting me to go for an MRI scan tomorrow, but my partner had just been discharged from the same hospital and I'm far too overloaded with things I have to do and asked them to make the appointment another day. They think they only have to "fit me in" but they don't factor in an hour's driving for me, a struggle to get from the carpark to the hospital when I am still weak from having been ill!
They didn't find any stones on scans while I was in, and I suspect it was just a bit of sludge blocking the duct or something. This is so new to me that the thought of being asked whether I want surgery or not is just too much. It's not as if there's been any discussion regarding my diet. I have recently been eating things I wouldn't normally, so I think it's just a glitch. I hate that they always assume we drink alcohol and eat loads of fatty and junk food. I just have enough difficulties with my partner being diabetic and I'm vegetarian. In fact, I have to go and prepare the evening meal already! When did they discover your stones?
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