Update on kidneys and other stuff

[Leenie0811]

Afternoon everyone,

Sorry this might be a long one!

Following on from my previous post (see link) I’ve had some progress with the doctors - I think? I thought if I ran it past you maybe it would all make a little more sense 🤞🏼

Here’s my previous post - healthunlocked.com/lupusuk/...

So I booked in with my GP and explained all my issues, they did a urine sample on the day (not had any symptoms for about a week) and as suspected everything was okay - no blood in the urine and it wasn’t really that cloudy. I have been referred for a scan on my kidneys though as my GP is concerned about the amount of times it keeps happening.

So I went back to work thinking all was well and then I started to feel really sick and nauseous, it got worse and over the weekend I started with a fever and sweats. I had to call in sick on Monday (last week) and see the doctor Tuesday. Same doctor who was shocked at the change given I was there a week ago absolutely fine, urine revealed inflammation and blood this time and he said with the stomach pains/tenderness its most likely a bleed on the stomach from Gastritis. I’m not allowed to take any naproxen until my course of Lansoprazole is finished which is annoying as my hands/feet keep burning, Ive got another 3 weeks on the meds and they took bloods on Friday to check for anaemia and general bloods.

I think I’ll book a telephone call with my doctor this week to discuss the bloods as I’ve checked my record today and found in the urea and electrolytes section my serum urea level is abnormal and is below the normal range. My doctors notes say normal is between 2.5 - 7.8 and mine is 2.1mmol/L ... does anyone have any idea what this test is or what it checks for?

The nausea has gone away but the fatigue and recovery time is taking a lot longer than I initially expected, its like its had an effect on my joints and stuff too. I cant control my temperature very well and I’m needing cocodamol more than usual to just do simple tasks - I wish it was different and there was a cure! Feeling so low at the moment 😞

If you made it this far - congratulations! Thanks for reading and taking the time out, just hope it all makes sense!

Lots of love

Leenie x

[Hidden]

Hi Leenie, sorry to hear about what you're going through now. I don't really know what to say or what advice to give you but what I will say is stay strong and try look at the positives if there are any. Some of the symptons sound a lot like what I went through the first time i was not well with lupus and the kidneys were involved. I hope this helps and please keep in touch with how you're getting on.

[Leenie0811 in reply to Hidden]

Thank you Kitman1 its so good to have people on here that understand! I feel like my family only partly understand sometimes or get frustrated as the days can vary so much from one to the next. Positive thinking is probably what gets me through the day to be honest - I try and keep a note of things I’m grateful for so I can look back on them when I feel down, it might not be much but its something ☺️

I’m hopeful the routine the rest of this week helps, lots of resting done this last week and so much sleeping but my body must have needed it. Let’s hope when the GP calls they can explain a little more - only got to wait till the end of Feb for the kidney scan too.

[Hidden in reply to Leenie0811]

Rest is definitely a good thing, only you know how your body is coping and how much it can take too. I currently have good days where I want to do things and the other days I find myself sat on the couch not wanting to do anything at all. If you have a consultant I'd go through them as I find my GPs are so out of touch with things like this as they don't specialise in it.

[Jmiller623]

Hi Leenie! A lower than normal urea is nothing to worry about. It signifies your kidneys are working well. Most docs worry when it’s too high which suggests kidney or metabolic problems. Your extended ENA panel in a prior post was negative (this looks for evidence of a slew of autoimmune illnesses) but it looks like your ANA is pretty positive.

Keep a journal of your symptoms and what the fatigue limits in regards to activities. Take pictures of abnormalities (even red or cloudy urine, thermometer with fever temp) and save them. When you go to your next doctors appointment, share the journal and pictures with them. Doctors love hard evidence and it can better help them understand what symptoms effect your life the most.

I’m so sorry you’re not feeling well and are down. It’s no way to live but sounds like you’re on the right track to getting answers. I do hope you find relief soon! Please keep us up to date. ❤️

[Leenie0811 in reply to Jmiller623]

I find that so confusing given all the pain and blood/inflammation in the urine sample over the last year or so 😫

I have an album on my phone when I get physical symptoms as it seems when I have a planned doctor or hospital appointment my body likes to be having a good day! (Sod’s law isn’t it?) if someone looked into my phone they’d see some weird pics!

Thank you so much for the well wishes, its so good to have people on this site to help through the difficult times x

[Jmiller623 in reply to Leenie0811]

This forum is definitely god sent! Certainly made me feel not alone during some of my hardest times.

I used to have blood/white blood cells in my urine in the beginning. It would be cloudy for no reason sometimes. My creatinine starting climbing and has plateaued at 1.3 (normal 0.8-1.2) after steroids. Cultures were always negative. Sometimes I wondered if I was getting kidney stones because I’d get pains in my back so bad. Keep an eye on your creatinine. This is the best measure for how your kidneys are doing.

I feel you on the phone pics. I have a folder named.....don’t look.....for all my unsavory pics. 🤪

I really hope things don’t get any worse for you. Not knowing is sometimes the worse part of this illness.

[KayHimm]

Leenie -

Sounds like you are really struggling. This is a hard time when the doctors are doing work up and you are very symptomatic. What do you mean you « can’t control your temperature? » Are you running fevers? Make sure you document that. Or is it you cannot tolerate heat, cannot regulate temperature? I may be able to help you document that for your doctors.

Good luck with all this.

K