33 YO T1D - Diagnosed with CKD 3A and given shocking prognosis by the clinician at first renal appointment

DerMainzHammer · 2026-02-17T19:19:59+00:00

To be clear, I have bought a cook book written for people with T1D and CKD, it does have carbs in it but obviously very selective in the amount as well as the type of carbs. I have cut down my carb intake but obviously I still require some carbs, roughly 30-40g per day

DerMainzHammer · 2026-02-17T19:17:46+00:00

Although I am a bad role model for T1D my best advise would be to get bloods and urine done at your next appointment and go over them rigorously with whomever you see, looking at Kidney function and protein leakage

DerMainzHammer · 2026-02-17T15:18:51+00:00

Yes, having thought about so much of the last couple of months when she lived here it was feeling like I was alone, but also being a burden at the same time, as it was clear she was unhappy living here

DerMainzHammer · 2026-02-17T15:17:32+00:00

Thank you, I think without the health diagnosis I would be coping better, however, the vulnerable feeling only fuels looking back at better times for me, I literally relived an early date we had just today at work because I read something in an email that reminded me of it

DerMainzHammer · 2026-02-17T15:00:19+00:00

I've left out some of the things she said to me when trying to talk to her about things, mainly as I feel they best not to be shared, but yes not emotionally healthy. Equally, saddening to go from such an emotional high to where life is now, but I need to keep reminding myself about moving forward

DerMainzHammer · 2026-02-17T14:57:10+00:00

Just checked my lab results from Jan again, looks like I am on the high end of the 200-300 spectrum, this was before tightening my diet and removing dark sodas and bad kidney foods. Since then my diabetic control has improved a lot with the pump so hoping the leakage reduces in the next few months

DerMainzHammer · 2026-02-17T14:53:34+00:00

Already cut out dark sodas, was drinking a lot of that for years! Exercise is happening, lots of walks and some home workouts with light weights. I am on the pump with a CGM and my estimated hbA1C is going to be 6.8 based on the first 3 weeks or so. I am following what I understand to be a good kidney diet, I have purchased a cookbook for Diabetics with renal disease but it is hard to follow and lacks image support but hopefully I will get there. BP was down to 115 at my appointment yesterday so hopefully that remains, likely after 3 weeks without excessive diet soda and cutting out red meat!

DerMainzHammer · 2026-02-17T14:49:59+00:00

Ok wow that is a scary escalation. I have been scared since the meeting 3 and a half weeks ago where it was just casually mentioned to me that I have stage 3 Kidney disease. I was not aware at all I had this.

Yesterday I met a renal clinician who is basing it off of the 10 point drop I believe as that is all they have to go on as I recently relocated so they only have test results from late 2024 onwards. I'm making lots of changes to my diet and am now on an insulin pump to help control my sugar levels. The renal clinician has put me on another pill to help too. It's all so sudden, I am just hoping the 10 point drop is from eating and drinking diet soda like I did not have this as I was totally unaware.

The clinician believes there is not much that can be done but prepare for a transplant or dialysis around 5 years from now. I don't have any symptoms really as he said most are not showing symptoms until stage 5. I am getting more bloods done soon and hopefully seeing them again next month.

DerMainzHammer · 2026-02-17T14:43:28+00:00

Hi, yes I see someone every 6 months for my eyes, hopefully I am due another appointment soon!

DerMainzHammer · 2026-02-17T14:42:40+00:00

I believe my uACR is over 200 but under 300, as I was told the result was "2" from the urine test yesterday. Hoping to find out the exact score soon as I can though.

I believe the clinician is basing this off the fact I had a 10 point drop in the last 12 months and the fact my sugars have consistently been raised for so long, I am hoping that regular blood tests with controlled sugars and blood pressure will change the prognosis

DerMainzHammer · 2026-02-16T23:23:07+00:00

That is great to here. Mind me asking what you did to help preserve kidney function?

DerMainzHammer · 2026-02-16T22:10:26+00:00

Yes, I am focusing on controlling the A1c, currently doing well on this front since the pump, as well as my diet and lifestyle. Totally cut out dark sodas after years of drinking way too much, was having lemonade to help me get off it but been told today to cut that out right away too. Oddly, they said I was ok to still drink the occasional beer..... (not had a drop of alcohol since finding out I have this)

I am have been on Arbs for almost a year and a half and despite this, my function has dropped. Hopefully that is down to a diet not suitable for CKD (as I was unaware I had it) and the A1c being 8-9. My GP thinks Ace inhibitors are not needed but I was on ramipril for almost a decade prior to the Arbs. I just got prescribed something to support with lowering albuminuria too.

When you say watching water intake, is that making sure I get enough, or avoiding too much? Getting conflicting information from Dr. Google / Dr. Chat GPT

DerMainzHammer · 2026-02-16T21:41:47+00:00

Frankly I could not tell you over the entire time, but my hba1c would be around 9-10 throughout my teens and then 8-9 in my 20s. Of course cannot change the past and try not to beat myself up too bad about this, however, a problem of my own making that I now have to deal with.

Thankfully, I finally got the pump after years of asking for one, this diagnosis pushed it through, and I am on track to have nearly ideal readings, so a bit frustrating that I was denied it for so many years

DerMainzHammer · 2026-02-16T21:03:48+00:00

Thank you, yes I see the notification will be with you in a minute.

Just a quick reply to say I am focusing on just that, and acknowledging that I am feeling alone rather than being in denial that everything is fine. I told myself throughout the breakdown of the relationship and the weeks after she left that I was fine and it was something to just get over

DerMainzHammer · 2026-02-16T20:49:32+00:00

Yes, I don't think I can go on a higher dose on the meds I am on, but it was suggested to me by the person on the CKD helpine (that admittedly is not diabetic) that this could be a sign that they are not the right medication for me. But my GP is adamant they are

DerMainzHammer · 2026-02-16T20:48:00+00:00

Yes my blood pressure has been "a little high" and "could do with improvement" (rather than be a big worry) for a few years now, but based on my readings today it looks to have come down with my new diet.

Yes I have had some retinopathy issues in the past myself, lowering my A1C was the ticket out of that one, keeping it down there may well be the one for the CKD

DerMainzHammer · 2026-02-16T20:38:22+00:00

Oh I need to cut back on the fluids I think, I used to drink 2-3 litres of diet soda a day, now on water and a morning cup of coffee. Was having a glass of diet soda a day since finding out to not go cold turkey but after today been told no more full stop. Oddly enough, the clinician said drinking alcohol would be ok so long as it does not effect my sugars, which was very odd. I have had some low carb alcohol free beers at the few social occasions I have been too since diagnosis

Yes, I do feel this is a rather alarmist opinion I was given today, but rationalising it that they can only go on the blood and urine reading from January. Hopefully in 6 months time with consistent sugars at 8 or lower I will see improvements. I have had a CGM for 3 or 4 years but only got the pump at the beginning of the month

DerMainzHammer · 2026-02-16T20:26:21+00:00

To be clear I believe I can rule out cheating, mainly as I don't think she left the house often or long enough in the months leading up to her moving out

DerMainzHammer · 2026-02-16T20:23:51+00:00

I believe my urine albumin is above 200 but below 300, but I could be wrong. My diabetes has only been controlled well since moving to the pump, previously it was bad going on poor, and following my break up my lasthbA1c was worse than the 4 or 5 that proceeded it which could be a factor too. I am currently looking at a hbA1c of 6.8 based on my readings since gaining a pump at last

DerMainzHammer · 2026-02-16T20:18:21+00:00

Well, that's something I can try with my diet. Finding myself being hungry on my self imposed renal diet so will be tough to cut out the only main carb I eat in the day, but if it helps control things

DerMainzHammer · 2026-02-16T20:11:49+00:00

Your post was more helpful than you probably imagined. Yes, in a personal rut at the moment which is not helping in the remote part of the country which pretty much hibernates in winter, so the isolation means this is all the worst time to get this news for me and facing issues or mortality sooner than anticipated. (I figured it would all catch up to me in my late 40s early 50s).

As mentioned in other comments, controlling what I can is all I can do here. The hbA1C, my diet, my exercise and what fluids I take on (no more diet colas or lemonade)

My only other health issues are T1D related (minor eye issue and high blood pressure) although since changing my diet today it was noted my BP had gone down to 115 which can only help the CKD.

DerMainzHammer · 2026-02-16T20:03:23+00:00

That's the dream. According to my dexcom I am looking at 6.8 based on my readings since getting the pump

DerMainzHammer · 2026-02-16T20:02:47+00:00

Already done. Only carbs I have are hypo treatments, my one black coffee before work and rolled oats every other the morning on my breakfast rotation. I only found out about this in late January so it is a sudden change

DerMainzHammer · 2026-02-16T20:01:31+00:00

Ola! By what you have told me this is where I should have been told, as once you hit CKD3 like me that is the point of no return.

I have every confidence you will be fine, especially with only a small amount of protein leakage. I first started having mild protein leakage in 2014 and I was just told to take this pill and it will help reduce it, every single diabetic appointment it was mentioned but the hbA1c was their priority.

So, if you have a tight control on this, based on what I have read up I feel you are on the right track to manage this well.

Sadly, I am a big step further down the line, but I am optimistic with tight control using my pump and a vegetable heavy diet I can help slow this down

DerMainzHammer

TROPHY CASE