Confused
Posted , 2 users are following.
Hello all,
I have been diagnosed with PV, am 38 yo male, and was wondering about my labs being off. My 5-HIAA and Chromogranin A testing has been elevated and are still rising.
No tumors were found but these numbers still increase. I'm thirsty all the time but don't have any bleeding. I was diagnosed with NAFLD, about a decade ago, but my liver lipids have been fine through diet.
Anyone else have PV with these labs and symptoms?
I'm concerned that just because my doctors don't see something, they are discounting them. So while I don't present with liver or kidney disease/tumors, my fears are real.
0 likes, 5 replies
peter98873 aaron45450
Posted
Hi Aaron.
I am sorry but I do not recognise the information you have given as being relevant to Polycythemia. This disease is not specifically related to tumors as it is genetically based with cause being a defective gene generally from birth. I would suspect that the details you have revealed probably refer to something different. The best I can offer is that you should seek further advice from your own doctors concerning the symptoms you have. Polycythemia is normally under the supervision of a Haematologist who would, in my view, know the disease and what tests were needed to support a diagnosis. Maybe someone else on this forum has the answers you require but I just do not recognise the details you provide. I was first diagnosed with PV some twenty years ago which is one of the disorders under the umbrella of Myelo Proliferative Disorders (MPD's). Best of luck.
Peter.
aaron45450 peter98873
Posted
Yes they are unrelated on surface. I may have been vague, Peter. Thank you for the response.
I don't know if I have primary or secondary PV. I was diagnosed by a Hemonc(ologist). He pulled blood to test for JAK2 Gene mutation and EPO levels. He didn't say I have Neoendocrine tumors, nor would I suspect them as causing EPO levels.
I will revise my ask. Does anyone with Secondary PV have it from tumors in liver, kidneys, or lungs? And if so, what were the indications, if any, that we're observed or symptomatic.
peter98873 aaron45450
Posted
Hi Aaron,.
Well, it seems you are on the right track already. I have never come across anyone suffering from PV or PRV that's related to any of those organs mentioned. This disease is, as I have said, cause by a defect in the Jac2 gene at birth. It is caused by the blood marrow producing too many red cells and very often does not manifest itself until many years later. That does not preclude younger people from being diagnosed with the illness, but it is a very rare and serious disorder needing specialist supervision. Once diagnosed it can progress to other MPN disorders but this can be be controlled by medical treatments.
The very nature of PV etc does not suggest any affiliation with other illness relating to cancer except by a progression to perhaps leukaemia which is also blood related. This may be an end product but good preventive treatment can deal with this aspect. There is no reason why anyone could not be affected by a different cancer at the same time but any connection between PV and other cancers has not been proven as far as I know. This is perhaps something to be discussed with your medical advisers. For your information I have in the past undergone severe renal surgery but in no way could it be connected to PV. which is now effectively treated by a number of new medicines available to doctors. These can be expensive. In my opinion I think you will find that specific cancers in other parts of the anatomy will not connect to any MPD illness which relates to the bone marrow. In the past I have been involved in drug trials relating to MPN disorders and I have never come across a relationship with other body cancers. I hope this helps.
Peter.
aaron45450 peter98873
Posted
Peter and all... Wow.... This past Friday I went back to the hemocologist and he reviewed my blood work. No JAK2 mutation. My CBC this day showed high hematocrit but within range hemoglobin. Yay, no PV! My WBC count was a bit high, but he told me he doesn't know why it has been rising for last 6 months and then normalize. He did however test for Chromogranin A levels. These went up from 100 to 1536. He sent me back to my GI. They did CT and I'll get results this Friday. They also want a octreotide scan to pinpoint the Neoendocrine Tumors (NETs) that haven't shown up on MRI and CT in past.
Glad I don't have PV, upset with the misdiagnosis, scared about the NETs.
Looking for luck and prayers.
Thanks,
Aaron
peter98873 aaron45450
Posted
Hello Aaron,
It is certainly good news news in one respect for you inasmuch as PV has been eliminated. I am not too conversant with the other investigations you are undergoing and really hope these prove successful. As I said earlier, PV is a serious and very rare disorder that is also progressive and can at times be quite uncomfortable. As you will now realise it can be effectively treated particularly with some of the new preparations being introduced slowly, but you will be far better off without any PV presence. I wouldn't be too concerned if I were you about what you discern as a mis-diagnosis. Look on it another way Aaron and be pleased that it was suspected and eliminated as a reason for your troubles. That is a big plus for these MPN disorders are as yet incurable and it is only in recent times that the cause of PV was specifically identified as a defective Jak2 gene and thereby subjected to medical investigations. Prior to this very little information was known about the problem. Many symptoms of different diseases can appear similar and a mis-diagnosis initially is nothing unusual in these circumstances. Best of luck for your future health.
Peter.
Peter.