Causes for secondary polycythemia

[writerb2]

I am happy to have found this forum and wanted to ask a few questions. My hb and hct have been high- ie 15.7 and 47.7 and the rbc was 5.5. I also have hht- a different blood disorder which is rare but may be cause.. But after a lot of googling it seems that they say kidney cysts can be an underlying cause and I do have 5 of them... and also I have a big fibroid which I also saw mentioned. My hematologist- only 1 meeting so far... did not think that the kidney cysts/fibroid would be the cause but probably the hht or something else.. Does anyone know if kidney cysts/fibroids are a common reason for the numbers being high..

Also he told me to not take iron.. but what about b12.. does b12 create new red blood cells as I read it is excreted as it's water soluble.. my ferritin is low ie 18 and iron is 77 though was 41 in february.. Is low ferritin common or is that something else that may be impacting this.. Thanks for any insights into this.

[Aime]

Hi writerb2, sorry to hear you are having problems. The best website to get trustworthy information is MPN Voice as like this forum, it is monitored.

I have Polycythaemia too so do understand what you are going through. I’m sorry I’m not a medic so can’t answer those questions but if you are worried about things, which you obviously are, write down all your questions before an appointment so you get all the answers you need which will in turn make you feel better. If it is a while before you can get an appointment, phone and ask for an earlier one, as anxiety does not help PV.

You would have to ask your haem about taking B 12 as no one else can tell you because although we all have an MPN on this forum, we are individuals with different medical issues, tablets, etc.

Keep in touch, you will always get support here. Kindest regards Aime xx😺😺

[Wyebird]

Hi writer b2

I can’t comment on your bloods only mine as I have Calr ET. I’m often anaemic. I had my b12 and ferritin measured. All were within healthy range. My haemo says I don’t need iron I have the ingredients but can’t produce Hb

So now I take b12 and chai seeds( high in iron) in the hope I’m at the top of the healthy range thus producing more Hb. I’ve recently read that vitamin C when taken with protein helps the body absorb iron. I now drink fruit juice with my meals.

You must consult with your haemo what supplements you want to take. You could over dose.

Good luck

[Jaygeee]

Hello, I know you posted 2 years ago but I was wondering if you every received any clarity on if your fibroid or kidney cysts were causing your Polycythemia? Did you take the B12 was it a problem? I have the exact same story as you. Thanks

[Hidden in reply to Jaygeee]

Hi Jaygee,

I hope my story helps, while you’re waiting for Writerb2’s reply. I have 2 fibroids, 1 large one removed around 1/02/20 and was put on birth control since 1/02/20. On 6/11/20 I stopped the birth control due to a facial rash (onset 4/15/20) that I thought was caused by the birth control. I went to the doctor around July for the rash, and my blood counts were high with hemoglobin=16, RBC=5.79, hematocrit=50.3%. I was sent to the hematologist, and during this time, I finally had my first mense. After 10 days when blood was drawn from the hematologist, all results came back normal, JAK2 negative, however, my EPO was high. Ive had history of anemia due to heavy menses from the fibroid.

[Pumpkinmunchkin in reply to Jaygeee]

Curious if any additional info here. Have a giant fibroid as well. My platelets started to increase when the fibroid developed. The more it grows the more my platelets increase. Not sure if connection here.