I don't think results are satisfactory, but I'm not the doc.

[hazmatrec]

hello! I've been wandering around trying to read up on things here, as I've had a few things going on and then a few blood tests have come back off.

last Tuesday, I had a blood pressure spike that left me immobilized and barely able to breath or speak. by the time I got a cuff on and tested, my bp was 179/113 hr 57. my usual is low, kinda 100/70, I have to squeeze muscles to stand up and other fun things. I phoned 111. and spoke to a medical person within about 45 minutes. at that point my bp was non emergency, 136/93 r70. I decided not to go to a&e,I had no pain from it, and no palpitations. the gp the next day requested bloods (liver, urea and electrolytes, and full blood count). the readings are about as they have been. however, my efr has dropped again, to 62, and my creatinine is holding at 91. the urea report is marked as 'satisfactory. no further action. ' and 'patient informed'. no, my appt is tomorrow for follow up, I snuck an early look, I haven't been informed.

to me, a blood pressure spike, plus six months (four tests) of worsening gfr, and six months of out of range creatinine, warrants at least something besides auto filing. I've got a bunch of autoimmune stuff going on, and if my kidneys are getting battered in the process, I would need to lighten the load where I can.

am I thinking wrongly? I admit, I am no doc. but from what I read here and on kidney assoc pages, this is what might be followed up on. any opinions?

thanks for your help! both any now, but and also what I've been learning by reading.

x cath tyler

[silverfox81]

I would have my doc run urinary Albumin to creatinine Ratio test. It's the gold standard to see if you have any protein leakage. That is a great starting point. Don't ask, demand it.

[silverfox81]

uACR... this is the test you want.

[silverfox81]

Educate yourself by reading up on KDIGO, KDOQI, National kidney foundation websites. Tons of info to self educate yourself from reputable sources. These are the experts that set guidelines for kidney issues.

[userotc]

Sadly its common that GPs dont advise about kidney disease in the early stages as most on here and elsewhere have found. But Id agree with comments that you should get as many relevant blood and urine tests done then re-post on here for advice, if required. Good luck.

[hazmatrec]

thanks for the replies. I'm leaving in about ten minutes. even with not quite enough coffee, cough, I feel ready to start asking questions. x

[hazmatrec]

hi all! well. I'll try and be succinct. I guess. the gp told me that my eGFR has been in the sixties for about three years, and my creatinine has been regularly elevated, except for once, in that time, and they wouldn't be urgently concerned unless there was a sudden change. I mentioned that nothing had been done when the filtration and creatinine both went off at the same time three years ago, but that having a blood pressure spike with bradycardia when I usually have a drop with tachycardia is new and off and combined, added to the collective chaos, might be good to get looked into. she said I would first need to get info from rheumy whether this could be related to their work. specialist nurse says bp is not affected by my biologic. but gp also requested I monitor my bp twice daily at regular times and log it and I have another appointment on Tuesday.

this is the procedure for potential hypertension tho, and that is a thing I do not have. so my next question will be, what information was meant to be gained from that data.

mind, I've written this having been lying down all day because of tiredness and stuff. I just gotta find my energy after actually getting to the doc office on Tuesday. I've written it down politely, in case.

kind regards

cath tyler

[Badger2024 in reply to hazmatrec]

Hi Cath. I totally understand your concern. You are right to keep on top of it. I was diagnosed CKD3 in December last year. I figured it out myself. My GP just said oh yes it’s only mild though. Turns out when I looked back at blood results that I had been stable but in the eGFR 60s for a few years and wasn’t told. Like you my BP is usually on the low side. A few years ago it was sky high at my appointment and I was put on anti hypertensives. Looking back now I see that it was from a medication I took for ADHD. Could there be something you’re taking that could spike your BP? As I didn’t always take this medication the BP medication often made me dizzy so I didn’t always take that!! So all the while the ADHD med, when I did take it, was having an effect on my kidneys that I was never told about. Still feeling annoyed as I would have changed my diet long ago and could have stabilised in the eGFR 60’s. My last was 44. So I don’t take the ADHD med or Bp med now and my BP is usually around 100 or 110 over 60 or 70. Make sure that you drink at least 2 litres of water a day. No more than 3 litres unless you’re exercising a lot which sounds like you aren’t. Don’t add salt and stick to a low sodium diet. Reduce or give up red meat. I so wish that I knew this back in 2019 when I had my BP spike. Ironically when my GP referred me to a nephrologist she said that my CKD was due to being non-compliant with my BP meds! First thing my neph did was take me off them. I had already stopped the ADHD med myself. I only managed to get the GP to refer me as I told her that she couldn’t answer all my questions so I wanted to see a nephrologist rather than get answers from ‘the internet’. She said ok as I was obviously anxious about it. Disgraceful really

You know that something is off. Insist on being referred to a nephrologist.

[hazmatrec]

well. follow up is tomorrow. let's see what the scoop is. latest gfr was 62. I'm just tired.

[hazmatrec]

well, this quarter, we have: gEFR 66, creatinine 86 ref 45-84, I've lost about 3.5kg (ha, no, I haven't increased exercise, and it's winter, give me stodge!), alt is 53 ref <40, and my crp jumped from 3 a quarter ago to 39 then down to 7 three days later, range<5.

"you don't have symptoms of kidney problems". looking at the nhs website, i actually have nine of the twelve listed for ckd that has settled in.

I've finally succeeded in getting a follow up appointment booked for the cauda equina surgery i had in December 2023, so the surgeon can see how things have turned out (props to the trailer mri crew in Newcastle on a Sunday for helping the unbalanced crutch walker with back pain lie right and reasonably comfortably). now it feels like there's no break before I dive into my next campaign. I know I'm just complaining when I'm still breathing and not full on broken, but. I'm tired. and weary. I'm actually falling asleep in conversations these days. and I'm putting all this effort in to getting help when the result is only treading water, not actually feeling functional or well.

speaking of that. strange words are starting to show up, as I think I am dozing.

I'll leave it for now, except for this question: remembering the médicos are human, that we are a team against the poor health, that anger takes more energy i don't have, any ideas on what I might try next?

kind regards

cath tyler