Stage 3a ckd

[Blackcat122]

Can help anyone help and advise please. I went to my GP beginning of June complaining of feeling exhausted,breathless, itching, muscle cramps and spasms.2 blood tests later I was diagnosed stage 3a ckd, egfr 4,6creatinine 110. I've just had a 2nd consultation today and asked him if any of my symptoms could be put down to ckd but he said not. I'm confused,as when you check online these are text book symptoms for ckd. Any help appreciated as this is all new to me. Thanks

[Genlady06]

Hi. I got diagnosed a few months back. Kidney infection last September caused my ckd3. And yes. All of the symptoms you are experiencing are most likely related to your kidneys. I’ve had all the same issues and I had none of them prior to that infection. My primary dr rocks. My nephrologist not so keen on. It’s a journey. I will say my vitamin D was really low. Since I started on a dose prescribed by the nephrologist some of the symptoms have gotten much better. Just sharing. Hope it helps.

[Blackcat122 in reply to Genlady06]

Thanks it helps a lot to think I'm not imagining it x

[userotc in reply to Genlady06]

Actually it sounds to me that your nephro is switched on if he prescribed vitamin D and symptoms improved - and, believe me, Im not one to praise any medics, including nephros! My mum's nephro is useless, Im afraid.

When her eGFR was 36 some 5y ago (after a nephrectomy), he said that was OK and it wouldn't improve but my dad disagreed with both comments! We therefore had to revert to Do It Yourself treatment including supplementation of vit D - taking her serum levels much higher than they were. Her eGFR improved therein (76 latest).

When we told the nephro, he rubbished a vit D effect. Of course, no-one can be sure how much it helped (particularly as she's done a few other natural things) but dad had done significant research eg kidney.org/news/newsroom/nr.... Maybe the nephro should do more research?

For some reason, he seems to take credit for mum's improvements despite offering nil advice! He now seems unable to advise how to reduce her proteinuria so ...... DIY again.

[seabreezegirl in reply to userotc]

Cut protien in diet ,especially Red meat .

[userotc in reply to seabreezegirl]

Mum's protein is already minimum, a balance with muscle loss. Update: we are currently quite satisfied with her proteinuria level (max 0.44g/24h).

[seabreezegirl in reply to Genlady06]

Go to DeVita website execllent top foods to eat. Read and follow brought my GFR from 55 back to 78 .

[Tolmezzo]

Sorry to be little bid rude but you urgently need another doctor opinion. Possibly a nephrologist. Your situation should not to be underestimated. All the best

[Blackcat122]

Thanks Tolmezzo. I've another blood test next week and another consultation with the GP so I'll take it from there depending on the results

[barbara55109]

Be sure your new Dr. checks for anemia and PTH hormone levels. Anemia is connected to CKD and if you have it tiredness follows. Also if your PTH is out of wack - caused by CKD, then you need a special kind of vitamin D because our bodies don't absorb or process D right due to CKD. (my plain language translation of medical talk) So while, not "caused" by CKD these things are connected. Muscle cramps may be tied to magnesium levels. Itching is tied to phosphorus levels. ALL connected to CKD.

[Blackcat122 in reply to barbara55109]

Thanks Barbara. Vitamin d levels were checked and ok, not anaemic either. Sorry I'm new to all this, but what is PTH?

[barbara55109 in reply to Blackcat122]

Parathyroid hormone (PTH) is a hormone your parathyroid glands release to control calcium levels in your blood. It also controls phosphorus and vitamin D levels. If your body has too much or too little parathyroid hormone, it can cause symptoms related to abnormal blood calcium levels from Cleveland clinic website.

[Flowerandme in reply to barbara55109]

Thankyou so much xx

[medway-lady]

Please don't google symptoms and be guided by your GP. In the UK if needed you'll be referred to a Nephrologist. GFR can vary a bit and all sorts of things can cause fatigue and the symptoms you describe. CKD is called the silent killer because often it's symptomless. I'd just add ask the GP for thyroid blood test and a full blood count but they may have done that anyway. In the UK the Kidney Patients Association is good and at the moment you have no diagnosis like PCKD or cysts or stones so you need to ask the GP for more info but above all do not panic. I think your GP is telling you the truth and you should not panic. The Renal Services in the UK are very good.

[Blackcat122]

Thanks for all your replies. I'll post again after I get my blood test results done this Thursday. Hopefully egfr has risen

[SMcCabe]

I had a very similar situation. My labs all had me at a stage 3a. I’ve had recurring UTI’s for 10+ years, interstitial Cystitis, recent kidney infection as well as a stone that has since passed. I waited months for my appointment with a nephrologist. In the process of waiting for my appointment I noticed I had been having muscle twitches/spasms over my entire body but mainly my limbs. This tends to happen at night or when I finally relax for the day. My muscles throughout my body periodically were becoming very fatigued. The muscle underneath my to tongue was even tired/painful when chewing making it very difficult to eat. I have also had very itchy skin, losing hair and several other things going on that I had attributed to the CKD as well. When I finally had my appointment the nephrologist said that she didn’t think my symptoms were related to the CKD. She also said that UTI’s don’t cause kidney disease (even if I can’t seem to get rid of them. How is that possible? An infection in the bladder, urinary tract and kidneys that has been there 80% of the time for 10-12 years, but not attributable to CKD 3a? She basically discredited any of my worries or concerns and told me to cone back in a year unless I have more problems. She didn’t even recheck my labs. I hope everything works out for you. Just know you are not alone in your journey.

[Blackcat122 in reply to SMcCabe]

Thanks for your reply. I've recently had the results back from my third blood test in 6 weeks, and I'm now classed as stage 3b. Egfr has dropped over 6 weeks from 58 to 40. I've a gp appointment on 19th August so I'm going to ask if I need referral to a specialist. I'm in the UK, and I've been told referral is only when you reach stage 4.

[seabreezegirl in reply to SMcCabe]

Have you tried Magnesium Malate , which is the most absorbable type and alittle milk before bed .

Help with muscles twitching and relax you to sleep .

Yes ofcorse repeated bladder and Kidney infections( and contrast if they ever used that for X Ray or MRI ) makes kidney damage .

I refuse contrast myself .

[drmind]

BTW are you drinking enough water? I start to get cramps when I'm neglecting my water I take. And, as soon as I step that up the water, they disappear. They itchy always starts up when either the phosphorus or magnesium is off.

At one time, I was diagnosed with very high parathyroid levels and the first nephrologist and my GP did nothing. I switched to my current nephrologist and he immediately started treatment with calcitriol and vitamin D and with a few months,the PTH levels fell in the normal range.

Hope some of my experiences help shed some light on some of your experiences. Best always and keep us posted.

[Blackcat122 in reply to drmind]

Thanks drmind. I will try to drink more fluids, water, not wine!!