Immunosuppressant's

[Bellarman]

Hi all, Bellerman here, I'm not long on here, post transplant almost 2years now, I've had persistent problem since the day I could go to the toilet directly after my procedure, I noticed it straight away, but left it 8months before telling any doctors, the being everytime I go for a wee it smells like fish, sorry if this sounds terrible but I quite down about the whole thing, my GP I went to first and I said to my liver consultant about the issue, now according to BNP book the medicine book that doctors check for interactions of different medications says it can cause unusual urine but my consultant has said they've never came across it and neither have the BLT nurses heard it either, so I'm wondering has anybody out there experience it or heard of it, I have asked the Consultant for a referral to an Urologist but sure now we have covid-19 and everything else is getting forgot about, Cheers

[Hidden]

Hello,

I am sorry to hear you have this issue, it must be quite demoralising. Have you considered trying to contact your immunosupressant drug company directly to see if they have heard of this ? Your consultant may not have heard of it before but then other patients may have been too embarressed to mention it.

I do hope you are able to find a solution to the problem very soon.

I assume the urine has been checked for infection.

regards

[Bellarman in reply to Hidden]

Yes and everything is negative, I shall endeavour to do that about the Company, Thanks

[Lam1e]

Hi Bellarman

I’d definitely follow Admin’s advice, but perhaps it is related to something in your diet. Only saying this as years ago I kept noticing an odd smell when I went to the loo! Turned out it was due to eating asparagus (I lived in NZ at the time and it was the season and cheap to buy), just a thought.

I hope everything is ok and you stay well🙏

Lesley

[Bellarman in reply to Lam1e]

Thanks but I know about asparagus, no it's directly related purely to my transplant

[Lam1e in reply to Bellarman]

I was just giving asparagus as an example, perhaps other foods can do the same👍

[Wass71]

Hi, there is a condition which causes a fishy smell on the body (sweat etc), it is caused by an inability to metabolise certain enzymes in some foods. Its called Trimethylaminuria. The way to treat it is to cut out those foods. You could maybe look into that an see if a change to your diet improves the problem. Also, medications have compounds that are not the actual drug but the carrier, different drug manufacturers use different 'carriers', so you could look into that.

Best wishes

XWassX

[Bellarman in reply to Wass71]

I've been told about that because kidney function could also be an issue, thanks