High blood pressure too!
Posted , 6 users are following.
Hi it's me again, im sorry to keep asking all these questions I'm just really impatient to see my specialist, I'm seeing him tomorrow for high blood, today I went to see my nurse at the surgery to have my blood pressure checked, she was really concerned, I'm only 46 and my blood pressure today is 165/88 170/90 and 164/80!!! She said this Is too high. My question can this condition make your blood pressure high? This will explain why I'm feeling dizzy today xx
0 likes, 18 replies
clem19079 julia15874
Posted
Stop with the opologies, your concerned about your welfare. I'm pretty sure your not bothering anyone on this site, we are here to inform and try to give reassurance if we can. Anyway , I have very high blood pressure and am on 4 drugs to control it. I feel my condition contributes to it. Also I am on hydrea, I was advised that this drug might cause me to have arthritis. I have it in my knees and back as well as my neck. I just have to suffer it, I don't want to go back to venesections, it was to stressfull. Being low on iron leaves me lethargic a lot of the time. I also have vertigo that I believe is due to pv. Any questions you have just ask, if someone has the answer they will txt you. Best wishes and take care.
julia15874 clem19079
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Hi I somethings have vertigo too, think it's when the blood pressure is really high, my bloods are all just above what they should be but I'm getting nasty symptoms. I'm dizzy today I know my pressures high as I've a dull foggy head and I feel sick! Seeing the haemotogist today, can't come any sooner! Going feeling awful too so that's good, as u usually improve when your due to see someone. Xx
frances20411 julia15874
Posted
I am not a doctor but have had 2 other cancers (NO chemo but surgery) and I am
a senior and live in America. I will not take hydrea (don't like the side effects)
My blood pressure runs low so I don't see a connection between poly V and
blood pressure. I eat a restricted diet of low iron e.g. no red meats, spinach etc.
I Only take B12.... NO iron supplement. Drink plenty of water and have a phlebotomy from once a week to once a month..that is it. Good luck!! I have
had poly V for 4 yrs. now. I believe each person's physical makeup varies
and I use common sense and prayer....very important.
keith28441 julia15874
Posted
People can have high blood pressure as a direct result of having Polycythaemia although not everyone experiences it. I for example don’t have high blood pressure but that’s not to say I won’t have it at some stage in the future though.
Kind regards
Keith
jessie2150 julia15874
Posted
Hi julia: Hope all went OK with your specialist's appointment today and you got some answers to your questions. Let us know how it went.
best wishes
jessie.
julia15874 jessie2150
Posted
Hi Jessie, thank you for asking, I hope your well? the specialist can't see any other explanation than polycythaemia for the high blood, so Ive had the JAK2 blood test and I'm now waiting, he said about three weeks so waiting xx
jessie2150 julia15874
Posted
julia15874 jessie2150
Posted
Yes that's what he's said, three test tubes were done, it took the phlebotomist ages to draw the blood off me,it ran so slowly, he said my bloods are high and he did mention the treatment of running the bloods off me if its positive and unfortunately with no benefit to anyone but me and tablets, but I've such deep vains and with a simple blood test it's a challenge for the phlebotomist so with that I'm thinking it will be better if the tests would come back negative and I can blame the menopause or high blood pressure or been over weight, otherwise it's going to be rather painful I feel and a bit like a pin cushion. Hopefully I will know pretty soon. xx
Zapamania julia15874
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Hi Julia I see your post is a few months old but I'm new to this site and I'm reading everything. Yea I believe your high bp is related to Pv. I have the same problem. In fact that's how my Pv was found. My bp started skyrocketing as bad as 190/112. I went from dr to dr. Finally a nephrologist that's a dr of kidney disease which is where bp is affected took a complete Cbc and there was the high platelet number. I'm convinced they are connected.
julia15874 Zapamania
Posted
Hi, my blood pressure fluctuates a lot, it was high and my platelets were on the high normal levels, at the moment I'm the other way because my blood pressure is on the low side and I've extremely cold, painful hands and feet and dizziness, I've knocked a lot of protein foods and salty foods out of my diet, im sure that's helped my blood pressure. I'm afraid it's one symptom then another, I'm only diagnosed Polycythemic st the moment I've no diagnosis of primary or secondary so if I'm secondary I won't be as bad as you all with a confirmed PV, my Heamotologist thinks I'm primary but that's only because there's no secondary issue found. I hope you get your blood pressure down the combination of both is not good. Xx
Zapamania julia15874
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Hi Julia my blood pressure is so wacky it's ridiculous. It can be fine for a week and then bam 190/97. I'm on bp meds but I think they have to be re-adjusted. No this is not a good combo. Bp & Pv. What's next? I'm always cold and my hands are very painful in the morning. Possibly arthritis. It's a lot to deal with. Do you have the jak2 mutation? Hope you find your answers too. Linda
julia15874 Zapamania
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No I'm JAK- but waiting for my JAK exon 12 results which should be any time now, I think it will be negitive too because my EPO was normal. It's just my red blood cells heamoglobin which is at 17.4 heamocrit which is at 0.53 and red blood cells which are at 5.66, my Heamotologist was talking about a red cell mass test and BMB next, he was also thinking I'm still primary, however I'm sure it's something secondary now that's coursed it, but no secondary issue has been found as I don't smoke. We will find out I'm sure soon. Although I'm not that happy with my Heamotologist, I first saw him in July, my levels are high, I don't feel good, he told me my symptoms are not Polycythemia and I should see my GP again, he told me my symptoms are my high blood, so I'm looking for another Heamotologist who can help me I think four months is a joke waiting for a diagnosis especially when I know that he could of done more! Xx
julia15874
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Ps...The GP said my high bloods are the reason I'm dizzy, cold, tired and I get headache! It's frustrating. X
Zapamania julia15874
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Hi Julia this disease is so damn rare and frustrating. I didn't get good news today. My platelets are a mil 59 last week they were 795. That's cause I couldn't tolerate 2 Jakafi 10 mg a day. So I started taking 1 a day thinking 1 is better than none. Guess not. So now I'm gonna go on prednisone for a week to get my body to stop aching. The goal is 2 10 mg Jakafi every day. I'm so scared. Why can't my body accept it? You are waiting awfully long. I hope you get your answers soon so you can begin treatment. Wishing you the best. Linda💕
julia15874 Zapamania
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Oh Linda, that's awful, I hope they sort you out very soon, that will probably explain why your blood pressure was up? Have you had any venesections? I'm going to be thinking about you today x
julia15874
Posted
Zapamania julia15874
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Hi Julia I'm in the US. Yea this whole thing is getting pretty scary. I only had one phlebotomy I guess you call them venesections. That was over a year ago. Seems my hematocrit was always in normal range and that's why I didn't need them. My platelets were ok for almost 4 years. In the 700 range and in the last 2 months all hell is breaking out. I really don't know what to do. My bp has always been a problem since I was dx. Thank you for your kindness.
julia15874 Zapamania
Posted