Question about treatments: Hi, I was diagnosed... - MPN Voice

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Question about treatments

doyle1500
doyle1500

Hi, I was diagnosed with Polycythemia . My blood levels are high. Hematocrit at 64 and Hemoglobin at 22. Is it normal for Hematologist not to see me for 4 months and not to have me on meds or treatment plan?

11 Replies
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Hi doyle,

This does not seem right to me at all. I don't want to worry you but I would ask for an urgent referral to another heamatologist. Most people would have a venesection if hematocrit is above .45 and your HB is very high?

I have PV, I am 63 and have been taking Hydroxicarbamide for the last 4 years. My HB is 13 and hematocrit .42. I have a venesection if it goes above .45.

You don't give your age and have you just been diagnosed?

You should get a second opinion urgently.

Very best wishes and let us know how you get on.

Judy

doyle1500
doyle1500 in reply to piggie50

Yes I had all my records transferred to another Hematologist .. Thanks for the support.

doyle1500
doyle1500 in reply to piggie50

I had 500 MLs taken out today, does PV make you feel full after a small portion of a meal?

piggie50
piggie50 in reply to doyle1500

Hi doyle 1500,

It can do if your spleen is enlarged. I have an enlarged spleen but it does not affect my eating. Your consultant can usually feel the size of your spleen, but early in my diagnosis I had an ultrasound which confirmed it.

Lots of other members of the site have the problem with eating and feeling full. I'm sure you will get some other replies.

I'm so glad you've had a venesection.

Best wishes

Judy

I should also add, my hospital appointments are every 12 weeks.

I agree with Judy.

I personally would think 12 week gap is the top end gap between appointments, and then only if your counts are fairly stable.

I second what Judy says about being referred to someone else, if you are stuck go see your GP and see if they can arrange for referral elsewhere.

Good luck, don't take no for an answer.

Paul

My hematocrit was once 62. I was sent immediately for a phlebotomy and because I was off to portugal the next day was given medication to inject before the flight then I was asked to have a blood test in Portugal two weeks later and I scanned it over to my specialist nurse here in UK. I like to be positive all the time but I would agree that 64 is too high. L x

Morning doyle. I agree with everyone else. Not to cause alarm. But you really should have had a venesection. When I was first diagnosed my hematocrit was .57 and I had my first venesection during that appointment. I then had to return to hospital every week for 3 weeks for blood tests and on the 3rd visit needed another venesection. I now attend the hospital every 8 weeks and if my HCT is over .45 I have one.

You really should seek a second opinion as 4 months, with no treatment at all is way too long to wait.

Kari

Hi..you definitely need to go see someone else as soon as possible. Mine was considered high at 54 and had 2 venesections in 48hrs due to travel plans to bring it below 45.

Good luck x

My consultations are about once every 9-10 weeks, and until recently I had been stable for over 10 years. With the blood counts you have you should, I would have thought, be having treatment to reduce them as quckly as possible. Upon initial diagnosis I had an immediate venesection and another a short time later as well as being prescribed hydrea. I would have thought that it would be odd to have been given those results and then been told not to come back again for 4 months without any further treatment in betweeen times.

Hi. I'd concur with what the others have said. As soon as my high haematocrit was noted (mid fifties as I recall) I was sent immediately for a venesection with another one a fortnight later. Appointments then moved to every four weeks and as my haematocrit levels become more stable (below that critical 45 marker) around every six weeks - with instructions to come in or call the specialist nurses if I get symptoms (headaches etc) in between times. I'd be concerned about the lack of intervention and would certainly want to ask questions and seek a second opinion as a matter of urgency. Good luck!

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