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TINU Syndrone

PostPosted: Thu Oct 20, 2016 12:17 pm
by G1970
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 :(

Re: TINU Syndrone

PostPosted: Thu Oct 20, 2016 3:36 pm
by bigbuzzard
Hi G1970

Welcome along. I've just done a quick google of TINU Syndrome, and found a few medical papers. It looks very rare – as you say! Nobody's ever mentioned it here.

I did find a post on this forum which may be a bit more useful.

It sounds like you should be seeing a good renal consultant who can give you the best advice about how to support your kidney function. Which hospital did you go to. Have you got a renal appointment booked there? They should be able to see you pretty quickly. As for diet, reducing salt and sugar, and generally eating healthily is a good start. There may be other things that are useful too, like reducing certain kinds of protein, but that needs a bit more information and some specialist renal dietary advice – all renal departments have dietitians attached who are usually very easy to see, and can be really helpful.

I just searched Facebook, and found a few mentions of TINU Syndrome here. You may get some advice there.

Good luck. Let us know how you're getting on.

Re: TINU Syndrone

PostPosted: Fri Oct 21, 2016 7:55 am
by G1970
Thanks for your reply and helpful information BB. I was admitted to the Royal in Edinburgh, who after tests and a biopsy, confirmed the diagnosis. I was discharged 2 weeks ago and had a follow up appt with the consultant who decided on the drop to 20mg prednisolone next week.

I didn't think about searching FB for it. I've now made contact with 2 other females from the UK with the syndrome, one of which has just made a chat group

Its good to make contact with others who have it, as personal experiences go further to putting someones mind at rest than google :shock:

Re: TINU Syndrone

PostPosted: Fri Oct 21, 2016 9:34 am
by bigbuzzard
That's great to hear.
Yes other people's experiences are really useful. When I was first diagnosed in 2006 with end stage renal failure, i found the stories on this forum really inspirational, And the advice I got here was as useful if not more so than what I got from the doctors.