Anyone know anything about kidney stones and PV/ET? I have just had an ultrasound an told I am "peppered" with them!

[jane13]

Haem says "nothing to do with him" but i feel he is economical with the truth when he thinks i don't need to know or am taking up his precious time!

[Mazcd Partner MPNVoice]

Hi Jane13, I've passed this to Prof Harrison and she has advised that you ask for a referral to an urologist for them to advise you on the kidney stones and how to deal with them. Maz.

[jane13 in reply to Mazcd]

Hi Mazcd,

I have been advised by haematology that there is no local lithotripsy available (non- invasive prodecure for breaking up gall stones) and in Wales they don't refer out of area unless issue more serious. I don't want an invasive procedure as I have no symptoms at the moment. Could you ask Prof H what she thinks of this? I can go and see the GP for a urology referral but I know I will have to nag so wondering if it's worth it? Also is there any connection between gall stones and PV eg: lots of blood products to recycle?? Is it particularly important to keep HCT low ( mine around 46 most of the time before I have venesection and then usually 4 week wait for this). Thanks in anticipation to you and Claire. jane

[jane13]

Thanks

[jazzyb]

Hi Jane, I was diagnosed with PV in 2007 & have currently got kidney stones on both kidneys which the hospital are just monitoring for now. I know that I have had & passed them (in agony) in the past. I too wondered if there was a connection with MPD's & kidney stones.

[sammypink]

Hello. I have ET. And they found I has kidney cysts last year.

[cwayman11 in reply to sammypink]

Me too

[LouisePRV Volunteer]

Hi Jane,

I have PV and have a few very small kidney stones - had a scan last year and was told that it's nothing to worry about, and so an appointment with a urologist would be a good idea, if only to put your mind at rest.

It must be something to do with either PV or hydroxicarbamide - I take 10 x 500mg per week.

Might be interesting to enquire at the patients day on November 16th.

Interestingly about a month after I started taking Hydroxicarbamide my thyroid did a flip

( underactive ) and I now take 75mg levothyroxine/ day ( small amount) - I've always wondered if there's a connection there too. Other than those two very slight niggles, I am - touch wood - absolutely fine and I'm sure you will be too.