TINU Syndrone
Posted: Thu Oct 20, 2016 12:17 pm
Hi. I've just joined the forum today as I'm feeling a bit in the dark at the moment.
I've just been diagnosed with TINU (tubulointerstitial nephritis and uveitis). The first I was aware anything was wrong was when I woke with a sore eye at the end of August.
I was given steroid drops to treat the eye, went on holiday to Florida then stopped the drops as advised. Woke the day after we got home with sore eye again. Contacted NHS24, who referred me back to eye clinic. Whilst they were checking eye, they noticed pressure around optic nerve and referred me to Neurology for a scan (and took bloods). When I got to the hospital the following day, they told me the results of the bloods were back and my kidney function has dropped to 50% so they were unable to do the scan without speaking to the renal team, as the dye isn't good for the kidneys.
They stopped the BP tabs and diuretic tabs i was taking and done CT & MRI which were normal. Lumbar puncture was also done and pressure was high. They've decided this is IIH and unconnected to the TINU.
I was then admitted to the renal ward, where my kidney function was now 25%. After controlling my BP and treating a kidney infection, a biopsy was taken. I was discharged just under 2 weeks ago and being treated with 30mg prednisolone steroids.
My reason for joining is to ask if anyone here has experience of this 'syndrome'. It seems to be pretty rare and info online is patchy. I'm also wondering if my kidney function is likely to improve, as so far its only stabilised at 26% (i'm back to see consultant in 3 weeks).
I'm also wondering if theres anything diet wise i can do to help my kidneys improve (I've basically only been told to stop adding salt and avoid sugary stuff as steroids affect the blood sugar).
Sorry for the long rambling post. All the above has happened in a matter of weeks any my head is spinning with it all
I've just been diagnosed with TINU (tubulointerstitial nephritis and uveitis). The first I was aware anything was wrong was when I woke with a sore eye at the end of August.
I was given steroid drops to treat the eye, went on holiday to Florida then stopped the drops as advised. Woke the day after we got home with sore eye again. Contacted NHS24, who referred me back to eye clinic. Whilst they were checking eye, they noticed pressure around optic nerve and referred me to Neurology for a scan (and took bloods). When I got to the hospital the following day, they told me the results of the bloods were back and my kidney function has dropped to 50% so they were unable to do the scan without speaking to the renal team, as the dye isn't good for the kidneys.
They stopped the BP tabs and diuretic tabs i was taking and done CT & MRI which were normal. Lumbar puncture was also done and pressure was high. They've decided this is IIH and unconnected to the TINU.
I was then admitted to the renal ward, where my kidney function was now 25%. After controlling my BP and treating a kidney infection, a biopsy was taken. I was discharged just under 2 weeks ago and being treated with 30mg prednisolone steroids.
My reason for joining is to ask if anyone here has experience of this 'syndrome'. It seems to be pretty rare and info online is patchy. I'm also wondering if my kidney function is likely to improve, as so far its only stabilised at 26% (i'm back to see consultant in 3 weeks).
I'm also wondering if theres anything diet wise i can do to help my kidneys improve (I've basically only been told to stop adding salt and avoid sugary stuff as steroids affect the blood sugar).
Sorry for the long rambling post. All the above has happened in a matter of weeks any my head is spinning with it all