Possible secondary polychthaemia
Posted , 6 users are following.
I have gotten a lot out of the posts and have a few questions. The last 7 years my blood work has always had my hemoglobin and hematocrit at the high end- ie around 45 percent and 15ish hemoglobin.. But my iron was generally good ie 55-65.. However in February my iron was 41 and my hematocrit was 48 percent and the hemoglobin was 16. My ferritin was 20...
Of course I am worried it could be kidney, liver or uterine cancer after searching on the net but I did have an mri recently due to having kidney stones and cysts and it seemed to list those organs as normal aside from the multiple benign cysts. It did say trace of pelvic fluid but mentioned a large uterine fibroid..
I see some possible causes of results like mine can be due to fibroids or renal cysts. It did say on MRI some hepatic congestion.. not sure what that is..
Other possible causes- I don't know if I have sleep apnea but I know I snore and I also am a terrible sleeper waking up every few hours for bathroom runs- maybe from the kidneys or not sure...
I'd love any insight- I am going to see a hematologist in a few weeks but in meantime am freaking myself out . Also don't know if this is relevant but I have been taking vitamin k2 which I know is related to clotting and viscosity- can that increase hematocrit and hemoglobin.. I also have hht- osler weber rendu- which doesn't really bother me aside from nose bleeds but it can result in problems due to there being less capillaries in body and the body 'could' form avms in organs- though I don't believe I have that issue..
I do get some heart palpitations and warm in middle of night.. worried it could be cancer so would love any ideas....
0 likes, 9 replies
angela_o..o dee76119
Posted
I think you have been reading too much on the internet and creating a whole heap of worries for yourself, along with their associated maybes and what-ifs.
Nobody here on the forum is medically qualified, so far as I know, so nobody is able to offer you more informed ideas than you have already had.
If I were you, I would stay away from self diagnosis and the internet. It will do you no good to go looking for answers there. Instead, look forward to your forthcoming meeting with a qualified doctor. In the meantime, formulate and write down all the questions that you have so that you are ready when the time comes.
Good luck.
ellen68007 dee76119
Posted
HI Dee! You agree with Angela 100%. Don't allow yourself to become Dr. Google. Soon you will think you have everything going wrong. The best advice will come from your Hemotologist. Even if you find out you have either primary or secondary the blood disorder is treatable. Just relax and wait until you see your Hemotologist. I am speaking from experience and I do have secondary polycythemia. Don't jump to conclusions and take it all one step at a time. Hope this helps.
Ellen
dee76119
Posted
Thank you so much Angela and Ellen. I totally have been reading every 'possible cause' with my untrained mind and making myself crazy. I also seem to notice more symptoms of course after seeing the primary. I know everyone's situation is different and of course my fear is that if it's a serious source of secondary it can be really bad... I really appreciate it. This might be a ridiculous question given what I just wrote but I was reading that having grapefruit can lower hematocrit.. of course that won't get to the source of the problem but since mine is forty eight percent I was thinking about doing that. I am so happy to have found this discussion forum. I have to wait for referral form to see hematologist and that may not be right away so of course I've been trying to 'educate' myself....
harrishill1 dee76119
Posted
Hi dee76119. I think you shd just wait for the Hematologist to diagnose your condition. You are getting ahead of yourself and worrying needlessly. If the Hematologist wants to know if you have Polycythemia Vera, he will look at your blood work combined with symptoms and diagnose you. Then he will test you for the jak2 gene mutation. If you do have the gene mutation, he will tell you you have primary PV. If not then he will determine what could have caused your blood work to go too high. I have primary PV, and was diagnosed ten yrs ago. I take Hydroxyurea, and am still doing ok. I had an enlarged spleen upon diagnosis, and discovered I also have gout. I take Allopurinol for that. PV is manageable, and you can live a normal life. That is if you don't come down with some other illness. So far, I am doing fine. I am a 76 yr- old female. Best wishes,
harrishill
dee76119
Posted
Thank you Harrishill1
That it good you are doing fine and that is very encouraging... I'm sixty.. I have hht too so in reading a group on that there are people who have hematocrit and hemoglobin and low ferritin/iron so that's a whole other complication- hopefully there will be a hematologist familiar with the rare disease too.. I will know more in a few weeks.... thank you for your post.
peter98873 dee76119
Posted
Hello Dee,
The advice you have already received is timely and sensible. Try just to keep things simple and don't look for gremlins under every stone. You will find that symptoms can and do often apply to other illnesses too. With PV it is not best to let your worries run rampant. Let the medical professionals decide your problems and take your thoughts to them also. You will learn more quickly about your illness and be advised of just what you do not need to concern yourself about. Yes, it can be unsettling when you don't have all the answers or knowledge needed but that is what the professionals are for to give you expert opinions and assistance. We all have learned to rely on them. Stay relaxed and let someone else do the fretting. Best wishes.
Peter
dee76119 peter98873
Posted
Hi Peter,
I think I wrote back to this but don't see it. I'll try it again and thanks for your comments. I did get back results that show my Erythropoietin reticulocyte and iron in normal ranges. My iron is now fifty eight and it had been 41..so I will bring that to the hematologist and see what he says. My hematocrit wasn't re-checked and I am curious about that number but am sure he will want a bunch of other tests as well...
Dee
peter98873 dee76119
Posted
Hi Dee,
Thanks for your message. At this early stage of your treatment for PV do not be too concerned with the blood readings you receive unless you have specific reason to question them. You will find that different treatments will affect the readings you receive and these will generally vary anyway. Once your treatment has become established the readings will usually settle into a pattern when perhaps you might keep an eye on them to ensure that nothing is awry. From what you have already mentioned previously I
would feel that your Haematologists are on top of things and will advise you if they have anything that may need an explanation or otherwise that you should know. This is most often the case and indeed it is something I have always expected for myself. The treatments for venesection do not necessarily apply for medication treatments for which different criteria will then ensue. This is all due to the variable nature of Polycythemia and how it affects people differently. Each patient is an individual and requires separate consideration. Over time PV can progress to different stages when the blood readings become more important but even then all can be controlled to keep you comfortable. I am not sure where you reside but if you are in UK with NHS there are some very good booklets which can be obtained from your Haematology clinic which you will find revealing and helpful. Also, consider the offerings of this Patient Forum site where you will find some some very qualified information available dealing with MPN's which is the medical group to which PV belongs. There is also a wealth of extra help from the other patients using this forum. Each will have their own experiences to advise on how to live with PV. The blood readings obtained generally apply in varying importance with the severity of PV from which one is suffering. Take everything easy and if you are troubled at all, then ask a few pertinent questions to any one qualified to help. Best wishes.
Peter.
debbie08388 dee76119
Posted
Dee, You get out there & learn all you can. The only thing the doctors are going to do for you is give you drugs, mostly chemo, and phlebotomies, or venesections. Find a cure, average people have done this for other diseases. I just started taking K2 myself. It is a natural anticoagulant, whereas K1 is a coagulant. K2 has not made my polycythemia worse/higher. Your iron can fluctuate depending on how well you slept, if you ate food cooked in an iron skillet etc. If you had cancer I would think they would have noticed your blood work & mentioned screening. So don't worry about that if they didn't mention it. I keep a journal & write down what I eat, drink, supplements I take etc. & the results of my test. Vitamin c near the time I eat beef will skyrocket my iron levels. Other days I can eat spinach salad & drink coffee & don't need any blood letting. I am not on any prescription meds. Good luck. Let me know if you find out any worthwhile info to help the situation.