Well that was a surprise
Posted , 6 users are following.
Just thought I would let you know this as it changes everything I ever thought, got my blood test back from last week and my bloods have considerably dropped, I've not had this in two years! My heamoglobin has dropped from 174-152 my heamocrit had dropped from 0.53-146, these levels are really good!! I can't believe it! I am actually over the moon, however my question is can this happen as I'm hoping they stay like this and not rise again, with poly can it fluctuate? My heamotologist said he would give me a red cell mass test to see if my red blood is normal for me, but clearly the higher levels are not okay for otherwise my blood would of stayed the same??? Not dropped, can any one make light of this is it something that happens, because I'm thinking of not having the red cell mass test and asking to just be monitored every three months? Do u think that's wise? The dizziness is still there a bit though! This is so strange. Has this happened to anyone else? I've not anything to change things, my weight is the same etc....
0 likes, 28 replies
kevin81762 julia15874
Posted
Hey Julia.... Glad to hear your levels have dropped... Curious, what time of the day did you get your blood drawn? I've experienced the same thing, but in my case, my levels normailized in like 3 days and were even better two weeks later, which made absolutely no sense to me. So I did a little digging and discovered that most people have a high Hb and Hct in the morning, and that throughout the day, your levels will drop. Most of my previous blood work was being done in the morning, so, after getting some high results (back on Sept 5th in the morning and at the hospital) I decided to wait until mid afternoon when my Dr Internist sent me again 3 days later... Wha la... Normal....! And well within the normal range, like back to where I have always been... Went again 2 weeks later, mid afternoon again, and wha la... all normal... I emailed a specialist who works a lot with PV and MPN's, and he said, the first thing any hematologist will do, is determine if the counts are a relative level, that is, is the plasma volume high because of dehydration or simply because they're high in the morning... So, in my case, yes, it has happened to me as well... Last year, same thing, i had blood work done in Jan, my Hb was 17.6, so just slightly over, waited 3 months, repeated blood work, and my Hb was 17.4. Nevertheless, I am still worried because of the itching, which I still have, and as far as I can tell, its my only symptom, if I have one...
julia15874 kevin81762
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kevin81762 julia15874
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Ugh.... Sorry to hear that Julia... Did you ever confirm your EPO level, as your hematologist you had said, had told you two different numbers? I'd confirm that... I know its hard, but try not to worry Julia, its probably nothing. So frustrating!
julia15874 kevin81762
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No I didn't get to know, I forgot about that but tell everyone it was 8 because when he told me the first time he had rang me specially wth the results about the epo, the second time he didn't so presume he didn't have the correct paper work with him and last time he phoned he told me that all my tests were normal so I know he was meaning epo and JAK exon 12, so presume when he said 3 he had got it wrong, which is the best way round for me, When I see him again I'll ask him about it though. X
Zapamania julia15874
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Hi Julia sorry about your confusion. Question what's an EPO level? We don't use it or call it that in the US. Just wondering Linda
julia15874 Zapamania
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It's the protein called erythropoietin from your kidneys, that tells your bone marrow to produce more red blood cells, in PV it's usually in most cases 3 or below, if you have a high level you usually have secondary reason for your Polycythemia, however I've learned that there's an illness called VHL that's considered primary but it's the protein from your kidneys that at fault it sends a wrong signal to your bone marrow and usually your epo is high with this condition. Apparently there is a lot of reasons and the JAK 2 and JAK exon 12 is just one of them and there's quite a lot more mutations that can do it apparently.
Zapamania julia15874
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Thanks Julia I haven't seen that on my blood tests. But I will look again. Linda
julia15874 Zapamania
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They might not of tested for it if you are JAK + but you could ask them if it's necessary to at your next heamotologist meeting x
Zapamania julia15874
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julia15874 Zapamania
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ellen68007 julia15874
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julia15874 ellen68007
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Hi Ellen, thank you very much. I saw GP, she wanted to ask what I'd done different because polycythemia does not drop that dramatically, she said I should speak to my heamotologist. So I phoned his secretary and filled her in, this evening my heamotologist rang me back so promptly, he too said the same that he is very skeptical that it's dropped like that so dramatically, he thinks it's a false reading he wants me to have a blood test in December then January, I told him I'd not eaten red meat and iron rich food only because i had felt all dithery when I eat rich iron food and he said the same as my GP he needs to check my ferritin levels, thinking heamocromitosis, so I've to have a iron test, ferritin and a full blood count December and the same Jan, if my readings are high for my full blood count I have to go ahead with the red cell mass test, if the irons high he's also going to test me for heamocromitosis, he was actually really helpful and nice tonight. He was saying that he's sure I have polycythemia and the last reading is a result of something I've done that's made the difference but we will decide after the next two full blood counts, he thinks my blood still has a disease is how he called it. He was grateful I rang and he also said dizziness is a symptom of polycythemia and he was only surprised I had that symptom because your levels are usually a higher for u to feel dizzy. So the waiting continues x
ellen68007 julia15874
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Thank you for the reply! I know know that feeling dizzy is a symptom of Polycytemia. I get it from time to time. My Polycytemia was diagnosed as secondary. Now I know it's related to COPD. I had a sleep apnea test that my Hemotologist ordered as this can be a cause. The test revealed very mild. My respirologist was not satisfied with this so had me wear a spirometer on my finger while I slept. That test showed my oxygen levels were very low at night and I stopped breathing 8 times. I am now on a machine to where I have a mask on but just at nighttime. That test came back very mild. (Sleep apnea). Will keep you posted how this goes. Will know if I need this machine December 15th.m