Early CKD Support
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38 y/o female, GFR 61.. very worried and confused

6 months ago I went to my GP as I was having dizzy spells. Dr said I had vertigo. I increasingly get heart palpitations and some dizzyness when I'm anxious as I suffer with anxiety but this was full blown constant vertigo for 8 days and felt rather unwell. Dr ran some blood tests, thyroid was fine, liver fine but kidney readings were below what he would expect for my age and to return in 6 months for a further blood test. I wasn't too worried as I thought maybe it was a one off due to an infection and will come back in 6 months... I then started to feel much better and the vertigo and nausea disappeared.

About a month ago my anxiety got to stage where I needed help, so.went back to my GP and was prescribed sertraline (SSRI anti depressant) for the first time in my life. The medication does seem to be helping a lkttle, my moods are no longer too low although still get anxious

Two weeks ago I gained access online to my medical records as we can now manage our appointments online. So I had a look at the test results from March... My GFR was 62. So I did some research and realised how close I am to CKD stage 3. Anyway last week has my next blood test a month early as this has scared me...not the news I wanted , my GFR is now 61.

Dr has asked me to take in a urine sample tomorrow

I am just really scared as I it's hihhly unlikely I am diabetic, blood results don't suggest anything else that it could be, my BMI is 24, my blood pressure within heathly range usually at most 120/80..

I am just scared and do not know what is going on .

I.must also add that in April this year I decided to go full vegetarian

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Hi Faithless. Firstly, try not to panic. I know that's difficult- I recently also started on Sertraline for stress and anxiety so i understand how you feel. However, stage 3 is not necessarily a life sentence. Your Dr will most likely be looking for protein in your urine. The best indicators of your kidney health at this stage are urea and creatinine. These show how well the kidneys are filtering toxins from your blood. Being vegetarian does not cause kidney failure, although you'll probably need to adapt your diet slightly if your condition worsens. Depending on the outcome of your next results, it may be possible to keep yourself well with a few diet and lifestyle changes. Ask questions and your dr may be able to tell you the next steps or put your mind at rest . Good luck.

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I just Googled GFR 61 and got conflicting info. One site said over 60 is normal!

The National Kidney Federation range is different though. Why don't you phone their helpline and see if there is anyone you can chat to about this -

0800 169 0936

I realise that it's easier said than done - but please try not to worry. I don't have any real knowledge of kidney disease but our health in general can be badly affected by stress and worry.

Have you got full information on your blood results - any ranges and comment by lab or doctor you could add to your post ?

Have you got full information on your Thyroid test results ?

You could ask your doctor to refer you to the Dietician ?? Find out if you need to add anything to your diet or restrict anything ?

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These were my results in march , just very basic numbers no comments as it's taken from my online records ;

Thyroid - TSH 2.43mIU/L and Free T4 - 15.4 pmol

Sodium - 145mmol

Urea level - 4.9 mmol

Creatinine - 88 umol/L

Bilirubin - 5 umol/L

Alanine aminotransferase - 15 u/l

Calcium - 2.41 mmol

Albumin - 50 g/l

Total protein - 73 g/l

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Hi again

Do you have the normal ranges - usually shown in brackets after the result?

I don't understand Thyroid - tag - could it be TSH? If so then I think 2.43 is OK for someone who doesn't have an Underactive Thyroid.

I think sodium is midway to high in range, but really need to see ranges. They can vary from lab to lab. x

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Soery yes tag is autocorrect , that is TSH - my doctor said that was bang in the middle or normal range ...

I don'thave any further info I will see if they can print it out tomorrow at the doctors - thanks for the advice and heads up that ranges will vary .. I am in UK btw. Thanks XX

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I just Googled sodium and it does seem to be top of the range. But that was back in March?? Do you think you drink enough water. I know I don't always.

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My husband says I should drink more water , I drink 1 litre minimum usually most days and some days more as quite thirsty, but I also drink coffee and until very recently sparkling water but apparently that rots teeth and as they are already sensitive and one filling I gave it up

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We did have a hot summer and at time of first blood tests had been doing lots of vigourous exercise so admittedly should have been drinking a lot more water

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Do you drink a lot of coffee? Would you consider switching to Decaf?

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I usually drink 2-3 cups of regular coffee a day, but some days I will treat myself to coffee from Starbucks or similar, but only once a week. I could cut down to one cup a day in the morning to help wake me up and rest of time could switch to warm water (I used to drink fruit teas or hot water and lemon but again the teeth issue!)

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It's just that caffeine is a diuretic and can contribute towards dehydration. I drink decaf tea and coffee, but have needed proper coffee in the mornings when tired so I try to remember to drink extra water to compensate. Don't you like weak decaf tea? Warm water fine, if you like it!

Do you eat a lot of salt? If so would you be able you cut down a little? Do you know when you will next have U&E blood tests?

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To be honest I have never really tracked my salt intake... All I have ever tracked really is calories in v calories out to maintain or lose weight .. when I do use myfitnesspal it tends to show I'm within the recommended daily limit for sodium but I guess on bad days I probably go way over it and it's not tracked .. I am making wiser choices now since March, trying to cook meals from fresh, fruit for lunch as that's quick. And easy, but still the odd sandwich. No processed meats at all as I'm veggie but instead I do like a bit of cheese or falafal whcih are high in sodium - as I'm becoming .more aware I am cutting down on these things to be fair.

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I don't know when my next bloods will be tsken. I guess it will be at least yearly now, seems to be the norm for stage 2 in UK on the NHS

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Yes, cheese is one-third protein and contains a lot of salt. Smaller portions ?

At least you're going in the right direction. I know I will have to make an effort to drink more water.

You'll have a clearer picture when you get more up to date bloods. If you check your results before you see your GP you can make a list of questions. I usually write a list of symptoms & questions because my mind goes blank when I'm called in!

Well it's past my bedtime (I'm an early riser - very early) so bye for now.

Keep in touch x

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Thanks I will share results from the urine test soon as I get them x

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Hi Mary i had a look at all my blood results on screen at drs and all indicators were well within the normal ranges , my sodium has actually dropped a little to 143 so that might be due to changing to a vegetarian diet and now I'm more aware and will cut back even more on processed foods and salt I hope that continues to improve. They will test for diabetes just to put my mind at ease and rule it out conoletelt, and they will do an ultrasound , but Dr said my GFR is stable and it could be I have always had a lower functioning and it's just a case of healthy lifestyle , no need to drastically change anything , and keep monitoring it. They will do a repeat of the renal blood tests in 3 months time.

I do feel much better now I've seen the GP. Will keep you posted on outcomes of these further tests xx

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Thank you both for replying so quickly I will certainly try not to overthink things until results are back for the urine sample.

I did have full blood count done in March but this time round not so detailed , I'll post the results up later when I get home . Thanks again

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Dear Faithless 1

Anxiety has a way of magnifying itself. It goes round and round in your head. I could think of nothing but my 'facing kidney failure' comment from my GP for years. And then the years of anxiety became more and more years. I looked up everything I could find about CKD obsessively. As the years went by I became less intense about it, until, at 86 years of age, at CKD 3 I realised it was probably not going to happen. I would say to you...Never despair. Hope for the best. Do not be afraid to share your anxiety either, there is lots of love and support out here for you whenever you need it. Hang on in there! xxx

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Thank you.. I am my own worst enemy sometimes! I do tend to catastrophise! Xx

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Perfectly understandable. No problem. x

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Hi there, I just wanted to reassure you a bit. I’m a bit older than you (52) but last year I was diagnosed with CKD level 3 a year ago. I have no known cause, I have a low/average BMI, low blood pressure and non of the normal risks. I was only told last year but when I got access to my online records I discovered that I’ve been hovering around GFR 60 for at least 10 years, so since my late 30s/early 40s and no-one had told me. It’s possible that your doctor will tell you you don’t have CKD as your GFR is still over 60 and a lot of doctors don’t consider that a problem. Whatever your doctor says, I would try and reassure you and say don’t worry! It’s probable that your Kidney function will remain stable or just have mild fluctuations. You can make things better by eating whole natural foods, avoiding processed foods and salt and fizzy drinks. Limit alcohol and reduce dairy. Drink plenty of water, relax and exercise daily.

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Very sensible, Jules, good advice and a reassuring reply.

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Julesboz it's almost as if you were at my drs appointment this morning! Dr is not too concerned at all but due to my age is sending me for an ultrasound to check , but main thing is my GFR appears to be stable, all my other readings are well within normal range, there were no traces oofblood in urine (also being sent off to check for protein), blood pressure today was 120/79 which again is ok but I will try aim for lower with more exercise and better diet. And yes I'm definitely keeping myself more hydrated and avoiding salt and excess alcohol

They have also agreed to run a blood test for diabetes but Dr doesn't think it's likely to be that.

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120/79 blood pressure is perfect , normal. No need for it to be lower.

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61 is not stage 3 CKD, just close to being classified stage 3A. Anything 60 and above is considered normal (although called stage 1 or 2 CKD). Is it a bit low for your age, sure. And your doctor is checking the urine just to see what is happening to make it a bit low. It could be absolutely a dozen things besides kidney failure. Kidney infection, high blood pressure, kidney stone, urinary tract infection, the list is long. And of course Dehydration and Diet. And a urine test will show the likely cause. A change of 1 point of egfr from one blood test to the next is normal. Mine ranges 4 to 5 points up or down each time.

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Hi Faithless,

What the others have said should help you worry less. Just a couple of additional comments:

1. You have control over what happens in the future. Resources that can be helpful:

National education, support and advocacy organizations:

DaVita Kidney Disease and Dialysis Forums is well known for their recipes but they

also have a forum for patients too.

Renal Support Network provides many support and advocacy services including a

phone support line.

AAKP is a comprehensive resource focusing on the quality of life for kidney patients through education, advocacy, patient engagement and the fostering of patient

communities.

National Kidney Foundation provides a portal for patients too.

I am sure there are other organizations nearer to you. The more you know about ckd, the more you can help yourself.

Mathea Ford has written several books, two of which have been helpful to me:

Living with Chronic Kidney Disease--Pre-Dialysis

• Create Your Own Kidney Diet Plan

She provides helpful information that should set your mind at ease.

2. You mention exercise. Exercise is good and necessary, but more exercise is not always better, especially strenuous exercise. This can raise creatinine level and lower GFR.

Good luck, and know that there are many here who have had all the same feeling you have.

lowraind

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Ok well Faithless, First of all RELAX, Really low GFR is when dialysis is considered. You have a long way before that. I have GFR in the high 30s, that is basically Stage 3, I do watch my diet, I lost my kidney to cancer, in 2014. I am 77 and going strong, fought 5 different cancers and I feel great, I am having many Afib episodes as well. You my dear are fine. My friend just went on dialysis and her GFR is 9. Yes, 9 !! You are in great shape enjoy it. I work in my garden, ride a bike and kayak. I am lucky I live on Lake Ontario.

God Bless you, Babe enjoy the work around you. XXOO Buddygramma

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Thanks all for the advice and reassurance.

I wil ensure I keep well hydrated, reduce/monitor my salt, cut down on alcohol to only once in a while/special occasions and more fresh food i am hoping my GFR should continue to remain stable and may even improve a little ... Feeling much more positive now xx

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Hi Faithless1

I am 25 and was diagnosed with CKD stage 4 in 2015 so I was 23.

I am overweight but was active.

My kidney failure isn't down to me being over weight, it is a factor but I'm fact it was down to pre-eclampsia with my 2nd baby.

My GFR dropped right down to 19 in December 2015 I had to have a kidney biopsy.

My GFR at the beginning of 2018 was up to 47 now it is on 30. I am currently in kidney crisis. Have another renal appointment on Friday 21st September.

I hope that yours stays stable and doesn't reduce anymore.

It is and can be scary when you see results and have no clue what they mean. Which is why the NHS website is the best thing to get correct information from. And what steps to follow next.

Hope everything goes well.

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a egfr of over 60 is more than enough to keep a person healthy..good diet..no excess red meat..avoid painkillers..add no salt to food .keep bmi levels for weight..and do a lot of this...😊😊😊😊😊😊😊😊...

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