For a Year I have High hematocrit and hgb but I only New since New Year. I've had a mutation test and a ultra Sound back in january wich showed a hematocrit of 56% and hgb of 18. Ultra Sound showed a fatty liver and no enlarged spelen. (Bmi is 34)And the gene test Came back negative so my heamatologist told me to look for a Secondary cause. But then covid happened. So I couldn't get test. At the end of May I went back to to my GP for a Blood test and my hematocrit went down to 51% and hgb to 17.5, WBC of 10.6 platelets are normal. Ferretin is normal. EPO was low normal.
But I started expiriencing abdominal pain and pain in Both of my Shin. But my GP Felt my Shin and Said they are Shin splints because he can feel the lumps. But I red that it might be symptoms of MF so im scared I allready progressed even though I don't have a official diagnose of pv yet. I have a sleep Study next week because of the way my body is build and Sometimes I wake up gasping for Air. Has anyone gone through the same Thing as me or are there hematologist here amd what do you think. Sorry for the Long post but the anxiety and insecurity is killing.
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LorenzoDb
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Hi LorenzoDb, sorry to hear you’re having such an anxious time. Bone pain in general is a symptom of PV which you may or may not have. Go to the mpnvoice website where you will get trustworthy information. Keep posting on the forum and the nice people on it, who understand exactly what you are going through, will support you on your journey.
If you have PV or MF, then there are many people on this forum who are still alive and kicking after many years. Usually, if your condition is monitored and treated as necessary, the expectation is a normal life span.
This is the most anxious time for you with tests and waiting for results but you get a diagnosis and then you will feel more in control of your illness and not the other way round.
You need to get answers to your questions ASAP so you are not so anxious as this will affect your health. Speak to your gp about your anxiety and he may prescribe something to help you cope. I had to back in 2012 and I know, once your system settles to the meds, they make a huge difference to your ability to see things for what they are. Please remember we have all been at the beginning of our diagnosis and totally understand what you are going through.
When you go to medical appointments, try and take someone with you as it is so difficult to take everything in and so easy to misinterpret words and their meanings. Go armed with a list of questions and insist in getting answers. In the meantime, post anytime you want and someone will always be there for you. Eat healthy, drink plenty of water to stay hydrated which is very important with a PV. Try and do something you really enjoy - I like walks in nature or even sitting out watching the birds in my garden. You will find something you like to do which will make you happier and lift your mood.
Aime is absolutely right.I often wake up with breathing difficulties,we have to learn to cope with all these stressful things....something to calm you from an understanding G P will help you cope Very Best Wishes and try not to worry.,only makes us worse.
I’m really sorry to hear of your anxiety. I know how that feels, as I have suffered from anxiety in the past. I would say, stay away from google for now, as you may misinterpret information, and that will only escalate your anxiety. It’s hard to find clarity in an anxious state.
From what I understand, your haematologist appears to be confident that your raised haemoglobin/haematocrit levels are related to a secondary cause. I would be inclined to trust the haematologist opinion, especially as no mutation has been found.
Secondary Polycythemia is not associated with MF. Sleep apnoea can be associated with Secondary Polycythemia. This is why you will be having a sleep study test. I do think you are receiving excellent health care, and hopefully a cause and diagnosis will be found soon.
We’re all here to support you. This is a great forum.
Hi. As the other replies say , try not to worry but persist until you get answers. Make sure you see a haematologist about your blood counts. If it is PV , you may be encouraged to know that my husband was very well for 26 years with PV, needing only regular venesection . His quality of life was not badly affected at all, despite itch which he managed by not staying in the shower too long and not having the water too hot, getting dried & dressed quickly. He progressed to MF after 26 years and has had that for nearly six years .
Your breathing problems at night sound like sleep apnea which is nothing to do with an MPN. If the sleep study shows you have slept apnea, there is a simple and very effective solution - a CPAP (continuous positive air pressure) machine which involves wearing a mask/ nose pillows to keep your airway open during sleep. Once I was diagnosed and used the CPAP machine, my life was transformed! Previously I was constantly fatigued despite seemingly sleeping a lot - with sleep apnea you don’t get the deep beneficial sleep as you wake up constantly due to breathing problems. The machine keeps your airway open and you get beneficial sleep.
Good luck with everything and keep posting , as the kind people on this forum will always be willing to offer support.
welcome- it’s awful being so young and having to go through all this. I think you would Benicia if you shared with your family or friends how you feel.
Yes breathing is a problem for some MPN’s but that for you is now under investigation.
Aime has given a lovely reply and I can’t really add to that. If no secondary infection is found my advise would be to ask to see a haematologist, as there are cases where no mutated gene has been found but diagnosis is an MPN.
In addition keep all your blood test results. Some doctors need persuading to do follow up.
It sounds like the proper assessments are being done. Hopefully you will get answers to your questions soon. If you do need to move on to care from a hematologist, then suggest you seek care from someone who does have expertise on MPNs. Not all hematologists have the needed KSAs. Here is a list mpnforum.com/list-hem./ . From what you have described, you may well be experiencing secondary erythrocytosis.
The anxiety you are feeling is understandable given the situation. It can become a significant problem in its own right if not addressed. I have been there and done that. Suggest you find a way to manage the anxiety more effectively. Something that works for me is the practice of Qigong. The mindfulness that comes from this practice is quite calming and helps in a variety of ways. I hope you find something that works for you.
Thank you all for the replies as you all told all of my anxiety comes from doing Research on Google(bad mistake) I Will propably try not to think much about it until al the other tests are performed. I think Doctors don't seem to be that concerned because there was a Blood test Where my hematocrit was in Normal Range when I didn't sleep all Night because of a Panic Attack. And that was only 3 Days aftery hematpcrit was 56%(no treatment still to this Day and my numbers are High but stable) so they seem confident I have sleep apnea even explaining why my Red Blood cels Rise with sleep apnea.
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