Confused!

[Naomi641]

Any help reassurance or advice would be much appreciated.

I got referred for further testing in Dec 16 due to having increasing creatinine and low gfr (about 53) I went for an ultrasound which came back normal.

Since then I had another blood test which showed my creatinine levels had decreased and gfr had risen to about 67. Dispute this I have been referred to a nephrologist who I am due to see in June. He has also ordered for me to have a series of blood tests taken 2 weeks prior to the appointment. The blood tests are

Ana, bicarbonate, c3, c4, ck and full blood count (including liver, kidneys)

What can I expect- what may be going on with my body?I get quite worried about the outcome and what it may mean for my future?

Thank you

[Nicolala]

Hi Naomi

Firstly, how are you feeling in yourself? Are you having any symptoms? If not then it's a good sign that whatever is happening has been caught early. Also be reassured by the normal ultrasound. As for the blood tests, I don't know what the 'c' ones are, but a full blood count and u and es ( urea and electrolytes ) will be good indicators if there is a problem.

What will the future hold? Who knows. It may mean medication, a change in diet or nothing. It will probably mean more tests... For now, try not to worry. You are booked to see a nephrologist. He/she will be able to answer some of your questions and decide on the next step. Good luck.

[Naomi641 in reply to Nicolala]

Thanks for replying. I don't feel too bad In myself. I have been dealing with a few symptoms such as increased thirst and a niggling pain in my calf,although I'm unsure if this is related.

I've had numerous full blood tests but nothing has come back apart from the things mentioned above.

Thank you

[bowler]

Hi. Naomi641

Try not to worry too much, as most GPs dont refer to nephrologist until you reach stage 4. [with exceptions ]

I have been at stage 3 for many years, my eGFR hovers around 38/40, and I have never been referred, last month it was 44 then it went down to 38 and last week it was back to 44, so it does fluctuate. I'm sure all will be OK with blood tests.

good luck

[Naomi641 in reply to bowler]

It's interesting to hear that you were not referred until your gfr was a lot lower. I forgot to mention that I'm 27 so I'm guessing my gfr is not too great in relation to my age 😑

Thanks for the reassurance

[bowler]

I feel your Dr. is being cautious at your age, so good for him. I think you will find several people on this site with stage 3 CKD have never been referred to a Nephrologist, and being managed by their GPs with regular blood tests, I have a blood test every 3 months.

[Naomi641 in reply to bowler]

Oh I see- I was not aware of this, I just assumed that you would be under the care of a neph. Thanks.

[LaureenD in reply to bowler]

This is good to hear because I was wondering about that too. I have not been referred to a nephrologist and I do have stage III kidney disease.. I am being managed by the blood test to every three mionths..

[bowler in reply to LaureenD]

One GP said to me "if we referred everyone with stage 3 CKD to the Nephrology clinic they wouldn't be able to cope" I have been well looked after with my regular blood test, I also had an x/ray of my kidneys, which showed i had one kidney smaller than the other with some cysts, and was told "nothing to worry about as lots of people have cysts which don't cause any problems." I also have hypertension, which I take meds for.

[LaureenD in reply to bowler]

You sound just like me. I have one kidney also that is bigger than the other and I have hypertension which I'm having a little problem with right now.. my blood pressure is a little higher than it should be right now and I'm not sure why.

[bowler in reply to LaureenD]

With CKD it's good to have your b/p under control, however mine has been higher than normal recently so my GP has upped my dose of Ramipril. to 7.5mgs from 5mgs. I have been on many b/pressure meds in the past and finally ended up on Ramipril, I see my GP tomorrow to see how I'm getting on with the higher dose, and my B/P is much lower.

I have already seen my eGFR results which is 44 so it's gone up from 38 so that's good.

[SRN1969]

Hi Naomi , it has been found a decline in kidney function can be due to auto immune problems so your ANA titre anti body is being checked before you see the nephrologist. You are very lucky to see a specialist so quickly so don't worry .. you will soon be sorted.

[kithsirid]

pl do not worry

my gfr dropped from 51 to 20 over 4 years , you can live with it , if USscan is ok that means your kidneys seems to be normal, how ever avoid high protein , red meat, high potasium goods, take less salt.

im 72 now my gfr rose to 27 from 20 , this is not fatal , find the real cause of grf drop , are u

hypertensive OR diabetic? go to this link u will get more information " GFR Calculator – Glomerular Filtration Rate- Davita "

Further more u may get many other links about kidney problems.

wish u good health

[Naomi641 in reply to kithsirid]

Thanks I'll take those tips on board. My blood pressure is fine as I've had this checked quite a few times and I've had tests for diabetes too which were negative

Just a mystery?

[Sally10255 in reply to Naomi641]

Are you following the kidney diet? There are foods on there that we probably consider healthy, but not for the kidneys. Ex..nuts, peanut butter, some fruits and vegetables are not good. Also you might read about potassium and phosphorus limits. For example again...bananas are not okay...that bummed me, I like bananas with peanut butter. Potatoes and tomatoes are also not on the diet. Might be helpful to look st the things I mentioned. I have also read that cholesterol medicines that are statins can possibly lower gfr. Great luck

[Naomi641 in reply to Sally10255]

I am not following any specific diet neither have I been told to follow one by my neph. Thank you for the information about this. I am not on any medication. I have another follow up in a months time so I will see what he says.

[Hidden]

Write down any questions you may have FOR the appointment with your nephrologist and get answers.. If your GP has referred you its better to see a specialist sooner rather than later .

Remember the NKF's main site has a lot of information for patients.

kidney.org.uk/help-and-info/

As well as a helpline:

kidney.org.uk/helpline

[Naomi641 in reply to Hidden]

Thanks- I don't have many questions yet as I don't know entirely what I'm facing as of yet.

I am on the waiting list so not much I can do apart from wait until the appointment with the nephrologist

Thanks for the links

[Zazzel]

I'm surprised to hear no one mentioning urine testing. I'd have your doctor do a simple urine test to check for hematuria ( blood in urine - might be microscopic) and protenuria (protein in urine) both of which can be identifiers for IGA nephropathy. I had blood in urine 4 years ago with GFR in the 50's. After doing numerous testing including ultrasounds and seeing a urologist, I was finally sent to a nephrologist. After watching my urine and blood tests for several years, I finally had such a large protein spill that I had to have a kidney biopsy to verify it was IGA N . Since then, my Gfr has bounced around in the 60,s and 70s, up to 81 and now I'm back to 70. I see both a nephrologist and holistic kidney doctor on a regular basis and take a bunch of supplements. So far, so good. The main thing I'm doing differently besides the supplements, is eating a lot healthier. I didn't realize how much protein was in everything and have been overdoing it lately which might be why my GFR dropped so much. We'all see if it makes a difference if I stay within 40 g a day .

[Naomi641 in reply to Zazzel]

That's great news that you have been able to manage your health through diet. I had a urine test at a new patient appointment at my gp surgery, although it was not microscopic nothing showed up

Thanks for the advice

[Zazzel in reply to Naomi641]

That's good news that you don't have blood in your urine. Sounds like you are in good hands if your doctor is keeping up with blood work and your GFR is still good. I'd say, nothing to worry about, but keep a healthy lifestyle and follow your doctor's advice. Best wishes😁

[toeragthecat21]

looks like your in good hands ..im not a specialist but i have had a mkidney transplant so i know a bit to help....NO salt added to food ...do NOT take ibruprofen it damages kidneys lower meat intake...drink only water for fluid intake ...and the most important thing is dont panic stress and blood presure is definately a bad thing for kidneys...hope this helps take care ,,,,chris....toerag the cat21

[Naomi641 in reply to toeragthecat21]

Thanks for the tips I mostly drink water at the moment with the odd tea, herbal tea and squash, and rarely add salt to food.

I will be attending my appointment on my own as my husband is unable to get time off to come with me. Any tips on what to expect ? Or what happened at your appointments?

Thanks

[Zazzel in reply to Naomi641]

My meeting was very basic. My neph just looked over my blood and urine worked, asked about my medical history and explained the different types of kidney diseases to me and told me what she suspected I had. Without doing a biopsy it was only a guess.

Think to your past and try to recall any major illnesses you've had. Kidney disease can be brought on by various causes. Also, do you have lots of allergies or food intolerances? That was the case with me which is what is causing my IGN nephropathy. Or maybe you have another type of autoimmune disease- lupus, rheumatoid arthritis. Maybe it's hereditary or none of the above. These were all things we discussed.

I met with mine for several years every six months until I had the protein spill I mentioned above which led my doctor to do the biopsy,

I think I am watched so closely by my neph because I gave hematuria and protenuria and my GFR bounces around a lot every time I get an infection. If you don't have hematuria or proteinuria, I believe from what others are saying that there is not as much reason to see a specialist. Or maybe it's because I live in the US and we pay every time we see the doctor. Gotta keep the money coming in. Lol.

I do work with an online holistic kidney specialist as well. If you are interested, message me here and I will give you information.

[Naomi641]

Thanks for the reassurance. I attended my appointment today. All my results came back normal after putting my gfr through a conversion as I'm of Afro Caribbean decent, it converted it to 70. No blood or protein in urine sample. I'm going to have to do a 24hour blood pressure test as it was high today ☹️

I think I may have not answered some of the consultants questions correctly though regarding past ailments such as previous episodes of chest pain :/ What do I do?

[dizzydi in reply to Naomi641]

Wonderful news on your eGFR well done. I am also having a 24 hour blood pressure test next week, even though i do my own readings at home they want to monitor closely by me wearing one of their own monitors. I suffer whitecoat/collar anxiety syndrome so I will have to try to forget that I am wearing the monitor.

They inflate to take the measurements every half hour day time and night times every hour.

So are you just waiting for your appointment for the 24 hr blood pressure monitoring?

The best of luck and again well done on your kidney function numbers x

[Naomi641 in reply to dizzydi]

Thanks for the heads up. Yes I'm waiting to be contacted again by a different department to set up the monitoring for me. I don't know how long I'll have to wait.

Thanks I still have a follow up appointment in October so hopefully I'll get the all clear 🤞🏽