I've been to the hospital today, my platelets were up a bit from 375 to 465. Haem just said they would keep an eye on it, I'm still a bit anaemic too. But don't go back til Feb next year.
I mentioned the pain under the ribs, and that the scan showed the spleen was a normal size but she just said if spleen was ok that was all they were interested in.
So back to the GP again with that mystery pain. It comes and goes, I'd love to know what's causing it Sometimes when I lay awake in the night I get quite worried about what it might be. But I have no other symptoms. It feels like I have 2 lots of gall stones - a set at each side!! I do like to be different.
I had blood taken at the hospital for the GP as well, as the phlebotomist at the doctors finds it impossible to get blood from me (I do like to see the colour of their money first). Last time she tried she ended up catching a nerve and I had a "dead" arm for the rest of the day, and I also had bruised and swollen arms and hands, and still she didn't manage to get any blood from me! The results will be the same as for the haem but I will still have to see the GP, maybe the new locum will have a magic answer for the under rib pain!
On the plus side there was a second hand book sale in the foyer and I got several paperbacks for 50 p each!
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I had a similar pain about a year after having gall stones removed and was tested for pancreatic cancer. After scan the surgeon said that there is a tube which takes the bile across the body into the intestine and sometimes you can have small stones in this as well. I had gravel in this and there was really nothing they could do, but don't worry, nothing nasty. This was years ago now and nothing more has happened so I don't worry about it. The ultrasounds I have had since for spleen size would have shown if there was anything lurking.
Yes. Mine were over 1m when I started on HU, but they have been around 350-380 for a while now, the haem didn't know why they had jumped to 465, and I'm a bit anaemic, however I don't go back until February so they can't be that concerned. Range is up to 450 for women, so I'm only slightly over at the moment. Hopefully they will go down again.
Hi There I'm curious to know how old you are? and no medicine other then aspirin that is fantastic! There is a lot of talk among the experts about watch and wait now but platelets at 375 that is normal?. Do you have ET or any of the other MPN's? How high were they and what did you do other then aspirin to get them back to normal?. Would be curious to know. Thanks
Hi mickey! am not near pension age but near end of 50tees ! After 6yrs ET went into post ET/MF !am on watch and wait dependent on Transfusion and Asprin only ! Transfusion 12month maybe one or two but now 3month apart gets breathless but able when at my best playing golf when I can !loving lift so much more to do !get fatigue working ! My own business !! Wow best wishes to you
platelets can jump around a lot mine can vary by 100 between tests and 200 is known, also 465 is quite low, most top haems wont suggest treating platelets under 1m unless causing symptoms
Thank you for replying. I've been on HU for over 2 years as mine went over 1m, they've been pretty steady around 380 for a while, although they did drop to 250 at the beginning of the year. I've also been anaemic on and off all year without any particular reason, not been ill. I'll have to wait and see what the next results bring.
Do you drink a lot of caffeine free liquids starting the day before your labs? It helps plump up your veins so it's easier for good work. Good luck. Katie
Apparently in the US higher platelet levels are considered acceptable. Obviously it depends on many factors but my specialist doesn't want me under 450 and says up in the 500's is ok. And he interacts with Dr Verstovsek at MD Anderson who's considered among the top docs in U.S. Strange isn't it? Katie
Hi Katie, my local say 550 is good, the MPN expert I saw said under 1500 mil not to worry. However he took everything else into account, other bloods past HX etc. I love Dr V he always says quality of life is more important when they manage a patient. I am also over 60, took HU with not much success. Is it true that being dehydrated before your blood work can raise some counts? I have heard that. Thanks Mickey
Hi. When I see Dr V I'm going to ask so I find out directly what he recommends for me. I'm relying on my local doc's statement of his recollection of their conversation. This winter I saw another great doc while in Florida, Dr Rami Komroji, who said my platelets should be below 450.
I'm a bit confused. I thought 465 was normal for platelets? When mine were 800, my GP didn't even bother to inform me. Are there different ways of reading the numbers? Pain under the ribs does sound like the gall bladder to me, (I used to be a nurse). It may not be stones, but you may have an inflamed gall bladder.
When I went to have my spleen scanned, I discovered I had gall stones! Didn't have a bloomin' clue!
Anyway, go back to your GP if you are concerned. It is absolutely your right to demand answers
I already know I've got gall stones because of a previous scan, the pain I don't know about is on the other side. My platelets were over 1000 before I went on HU, but have gone up to 465, which is just above normal, hopefully they will have dropped again next time I go. I see my GP on 23rd.
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Myelophibrosis and Ruxo
platelets increasing ?
MF, gastric varices, low platelets etc etc, anyone else with simlar set of problems?
Had bmb today 
