update

[Mostew]

I nearly finished update when I pressed something and it all disappeared..

Before my phone appointment with Guys this morning,I rang GPto check if Alelle burden results were in. As usual great confusion, long story short , it hasn’t been done , despite me double checking and it being confirmed it had a couple of weeks ago and last week…….

The GP can’t do it so I will need to go to London. Next appointment early March.

Platelets down from last appointment (540)despite my not increasing hydroxy ,so

Carry on with 3 one week 4 next. .

So many different opinions on what is ok . Even in same hospital.

I asked if strong smelling urine might be caused by meds. He recommended a glucose HBA1c test. So having that on Friday. He didn’t think Hydroxy was causing odour( it’s not sweet which I gather it would be if diabetes was the cause….

[saltmarsh]

Interesting and, at the same time, a little disappointing. Sorry about the incomplete analysis. My HU dosage has been steadily reduced to 1 four days a week and 2 the other 3 and the numbers continue to slowly improve. Shocking to me considering over a year ago I was trying to take 3/day except my body couldn't deal with that dosage. Occasionally I get a spike in something but my last results from a week ago were all in the acceptable range.

Good luck going forward. Perhaps the odor is coming from something you've been eating like asparagus?

[Mostew in reply to saltmarsh]

Definitely not food . Glad you have worked out more agreeable amount of hydroxicarbamide to take.

3 a day was a lot....

[Joetcalr]

Hi, my urine smells after having my hydroxy capsule, strongest about an hour afterwards. ..

[Mostew in reply to Joetcalr]

Haven't noticed it's just after meds particularly. Good you have tracked reason

[mhos61]

I hear your frustration regarding Allele burden percentage.

Like you, I have ‘shared care’ with Guys.

At my first appointment with Guys, a Jak2 quantitative test was requested by Claire Harrison to be undertaken with my local haemotology department and the results forwarded on to Guys. Well, what a task that was!

I waited in anticipation for my next appointment with Guys (four months later) for the results. I was soooo disappointed to find it had not been done. My local haemotology department had done the Jak2 ‘qualitative’ test!!!! It was already determined at diagnosis that I was Jak2 positive?

I contacted my local haemotology department and had to basically spell out what I needed, quantitative Jak 2 as opposed to qualitative Jak2. After ‘much discussion’ the top and bottom of it is this particular test is not done in the labs where I live, I suspect it’s the same for you. I had to make a special appointment with my local hospital where they took a blood sample which was then forwarded onto Guys labs. So, it can be done without going to London, but it’s such frustratingly hard work from my perspective!

[Mostew in reply to mhos61]

Well done for persisting! I asked my local hospital but they won't do it either . Strange there are so many different 'rules'

You have to have a decent amount of energy to battle on with 'asserting ourselves ' don't you!!! I'm lucky I can

[mhos61]

Yes to asserting ourselves, only way to get things done!

I suspect the labs that do the Jak2 quantitative testing in the UK are probably very limited, hence why the local hospitals are quick to say they don’t do it. I know after running the wrong test, my local team asked their Sheffield lab about the quantitative test, and they don’t do it…!

So simple in the end, I liaised between Guys and my local team, attended a prearranged blood test appointment with my local haemotology CNS who took the blood sample, she then forwarded it onto Guys. Saved me a trip to London. Had the results at my next appointment and delighted that the allele percentage is only 3.69!