up and down numbers: I just got back from... - Early CKD Support

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up and down numbers

Butchga62 profile image
13 Replies

I just got back from my kidney doctor. My GRF dropped from 43 to 36. He said it was not consistent. I take a low dose of blood pressure meds triamterene 37 broke in half and a small

Dosage of Zoloft. I drink water but not huge amounts of it. He said it could be the heat or a number of things. I got upset since I am diagnosed

Stage 3 kidney disease. He said not to be that it’s not dialysis ready just yet. Creative levels were up.

help. My mind is working overtime.

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Butchga62 profile image
Butchga62
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Gorsemoor profile image
Gorsemoor

Do not panic if your blood pressure is under control the drop is almost certainly temporary.Always be careful what you eat a few days before your blood test avoid red meat and eat plenty of greens.I’m now 77 and when I was 72 I dropped from 31 to 26 and I panicked but eating carefully and keeping my blood pressure under control I am now on 27 the range over the last five years has been 32 to 25 so I’m stable.

Keep meat to minimum eat fish and chicken and avoid to much protein before your tests and I’m sure you’ll live to a good age.

RickHow profile image
RickHow

I was shocked that your doctor said to you something about it is not dialysis ready yet. You are FAR FAR FAR from thinking that way. EVERYONE'S numbers vary from test to test. Certainly no one likes to see their numbers get "worse", but it can be just as likely that at the next test the number gets better. And the result each time is easily affected by your hydration level, the foods you recently ate, the medicines you take, etc. For example I would question my doctor about the bp medication. It CAN and DOES affect kidney function. It also dehydrates. Here is some info:Triamterene is used alone or in combination with other medicines to treat high blood pressure (hypertension). High blood pressure adds to the workload of the heart and arteries. If it continues for a long time, the heart and arteries may not function properly. This can damage the blood vessels of the brain, heart, and kidneys, resulting in a stroke, heart failure, or kidney failure.

Stage 3 is NOT some death sentence. I am 72. i have been stage 3, in the same range of egfr as you mentioned (up, then down, then up, etc., etc.). BUT overall average I am consistently in the same stage.

You mentioned your Creatinine levels are up. Egfr is based upon your Creatinine levels. If your Creatinine is up, then your egfr will drop. My doctors do not even monitor my egfr. They say it is much easier to just monitor my Creatinine levels. I vary test to test from 1.7 to 1.9. I even hit 2.0 one time, then the next test, 3 weeks later was 1.8.

Suggest a different bp medication (there are hundreds to try) and see if there is any change (improvement). Personally I take amlodipine and lisinopril daily for my bp.

kwikc profile image
kwikc

It is very easy to get worked up over this eGFR number which has several different formulas by which it is calculated. As has been said, it is influenced by many variables as well and varies quite a bit normally. Whatever area it is in now, it isn’t ever going to get into the fully normal range of >90. And it will normally decline with age. The type and amount of protein consumed is a big factor also as are medications.A

The BP med you are taking is a potassium sparing diuretic which depleted other minerals, so you should be checking electrolytes from time to time. One of its side effects is kidney stones too.

From what you say, I might be inclined to advise changing nephrogists.

Butchga62 profile image
Butchga62

Hi everybody yes this doctor who is said to be good lacks a certain empathy. He told me not to stress out. It was like taking your car to a garage and fix the problem. Your good for another 10000 miles. As someone who is new to this I am afraid. The blood pressure Med I am on gives me no side effects and I am taking a low dose at that. My blood pressure has been ok. Went I went to see him it was 155/90 and it hadn’t been. I had eaten a pork sandwich and potato chips before I went. (I know bad choice) but for the most part it’s been ok. Of course a low number scares me thinking dyalisis. I am new to this and don’t understand what I need to do. What kind of diet. I am a mess.

purple-1974 profile image
purple-1974 in reply to Butchga62

Hi Butchga62How you are feeling is completely normal, I understand how concerned and worried you are feeling, I’ve had CKD diagnosed since 2008, I was 34 years old, but really I’ve had it all my life, at the time of diagnosis my level of creatinine was 149, which put me into a category of stage 3 CKD. By my consultant I was advised to limit animal protein but not cut it out completely, but eat a healthy balanced diet of fresh fruit and vegetables and whole grains, limit salt and highly processed foods, drink enough water to have clear urine, and exercise moderately three times a week. Over the years I’ve had to tweak my own personal diet, due to my blood work range, as my potassium can sometimes be raised , or my phosphorus levels are low. My baseline levels are quite wide as my consultant is not generally concerned if my creatinine levels are between 149 and 179, What I am trying to explain is that at this moment in time your blood results and blood pressure are only a snap shot, of how you are doing right now. A whole load of things can change your results, at a drop of a hat, hot weather can make you dehydrated (increased creatinine) and increase / decrease your blood pressure, as can eating a high sodium / high protein meal.

RickHow profile image
RickHow in reply to Butchga62

Don't even pay attention that much to the blood pressure reading you get at the doctor. As you wrote, yours was HIGH!. But most people get abnormally high readings at the doctor. I almost always get readings at least 20 points or more, higher at the doctor. It is nervousness, atmosphere, etc. Get (if you don't already have) a home bp monitor. They are not too expensive. My doctor has me take my only blood pressure 3 times a day (I usually do it mid morning, mid afternoon, before bed. It is important to take it about the same time each day.He has me record the results and show it to him when I visit. He likes to see about 5 consecutive days of measurement. This would be your true bp.

You are far too panicked about everything. While bp control if very important for many reasons, not just kidney, it is NOT some magic fix for kidney problems. The higher the blood pressure the more negative effects it will have on your kidney function. So the reason you want your bp under control is to prevent further damage to your kidney. But if you get your bp down to a low number (normal or below) it will NOT necessarily "fix" your kidney. It will just slow the decline. You mentioned a low number scares you into thinking dialysis. I guess you mean a low egfr, not a low blood pressure. Also, even in a totally healthy individual there is a decline in kidney function as we age. This is normal.

This doctor of yours speaking about dialysis when you are at stage 3 I think should not be saying this. Again, I've been stage 3 for 5 years, have just one kidney, egfr has been fairly constant.

BUT you are doing yourself no good with your approach. Eating pork and potato chips is a terrible idea. Just terrible. To much protein, animal fat, salt, You need to change your diet.

Stay away from foods that are high in protein and salt. Doesn't mean you need to stop them totally, but once a week is enough. Avoid sodas. Limit caffeine to 3 cups a day or less. Keep your potassium and phosphorous intake low. All food packages have content labels (how much of this, or that). Try to keep your daily intake for each category to total 100% or less.

If you write down at this moment what you consumed yesterday I bet you would be shocked how much more than the recommended amounts you have consumed. Drink enough water to keep your body hydrated. Just monitor your urine. It should be very light yellow in color, almost like straw. If too clear, colorless you are overly hydrated. If yellow or very yellow you are not hydrated enough. A bit of exercise each day will help. You don't need to life weights. Just go for a nice 30 minute walk at least 5 days of the week.

Personally I would be asking my doctor about a different blood pressure medication to see if changing it has an effect.

Here is information on the drug you are currently taking:

Triamterene: less powerful diuretic usually used in combination with other diuretics to prevent low potassium levels during therapy with other diuretics. A disadvantage is that it may sometimes raise the blood creatinine concentration and give the false appearance of CKD.

Get that? it CAN increase your creatinine and give the FALSE appearance of kidney disease.

In my opinion the best way to find out, is to stop it, use a different medication, and a month or so later see if you have improved.

Butchga62 profile image
Butchga62 in reply to RickHow

Thank y so much! I feel a lot better. What kind of diet should I be on? I’m kind of a creature of habit. I have to follow a plan. I am not to crazy about my doc and thinking of changing. But I want to make sure I am in a good place before thank u for responding…..gail

sam221 profile image
sam221

I would say two things. The first is that fasting on water for several days, consistently could raise your eGFR and most likely lower creatinine levels because your kidneys will not be working. I heard this it makes sense to me. I need to lose weight as well. Secondly, I also saw that sodium bicarbonate has been proven to stop the progressin of CKD (my words) because it slows the decline to normal 1%. This has been proven in tests. They say "slow" progression of decline to normal rate--but I saw if it slows to normal rate it is stopped from the bicarbonate. Side effects are higher blood pressure so be careful. Obviously you should be eating mostly vegetables and fruits. Protein and life expectancy go in opposite directions, not just for CKD either. It is good to limit protein intake, which makes the kidneys work. Also if you have gout issues then lemon water plus sodium bicarbonate should be daily.

RickHow profile image
RickHow in reply to sam221

As with anything found on the internet there are as you say a study that indicates sodium bicarbonate helped slow the progression of kidney disease. it was a study of 134 patients. Of course, as with any study all 134 did NOT show improvement. There are about 4 or 5 "studies" on the use of bicarbonate on people with CKD. Mixed results. HOWEVER it is shown that the use of Sodium Bicarbonate may slow progression but the patients that showed this were those who in addition to having CKD had Metabolic Acidosis ( a lower level of bicarbonate in their system). It seems that those with Metabolic Acidosis AND CKD had a more rapid rate of decline than those with "just" CKD. The introduction of sodium bicarbonate helped the Acidosis and their rate of decline in kidney function slowed to match the "normal" rate of those without Acidosis. So it kind of means they were more rapidly declind dude to Acidosis, the Carbonate helped th Acidosis, and in turn their rate of kidney decline was reduced...but it was above average rate of decline in the first place.The most recent study on this topic was in 2019. Here was its conclusion:

Conclusion: Treatment of metabolic acidosis with sodium bicarbonate may slow the decline rate of kidney function and potentially significantly improve vascular endothelial function in patients with CKD.

See the key information in that statement. It slowed the decline in those with metabolic acidosis and CKD.

nonna70 profile image
nonna70

My nephrologist told me the same thing about EGFR-it goes up and down. As long as it doesn't continue down for several blood checks, it's all right. Many of us are in Stage 3. If you want, learn about dialysis but educate yourself about diet. I follow the recommended renal diet of limited meat (mostly chicken and turkey with fish thrown in) and care for sodium, potassium and phosphorus. Many kidney organizations like NKF, AKF and Davita have diet advice and kidney-friendly recipes. It takes a while to relax but you can do it!

Butchga62 profile image
Butchga62

I have an odd question. Since the blood pressure Med I take triamterene 37.5 and I take half of this. Could cause a false reading of the gre test. Could that mean I actually do not have kidney disease. Before taking blood pressure meds my number was like 53. Just curious. Again I only started taking blood pressure because of a stressful work place. Before I never took anything. Thanks.

RickHow profile image
RickHow in reply to Butchga62

YES that drug can make it appear you have CKD when you don't. The drug can affect the level of Creatinine in the body. Increased Creatinine will result in a lower egfr and therefore might be classified as CKD when it is not. Here is a quote:Triamterene: less powerful diuretic usually used in combination with other diuretics to prevent low potassium levels during therapy with other diuretics. A disadvantage is that it may sometimes raise the blood creatinine concentration and give the false appearance of CKD.!!!!!!!!!!! Exactly what you are talking about.

I recently had a similar experience with a drug called Inlyta. It raised my Creatinine level by 3.1, indicated CKD. I stopped the drug and within a week my Creatinine level returned to my normal. We started the drug again and it raised the level again by over 3.1, indicating I had stage 3 (close to stage 4 kidney disease).

Plus the drug is a diuretic. So you are "flushing" all the water out of your body. This can easily appear as dehydration which also effects if you have CKD or not. Stay hydrated while on this drug.

Blackknight1989 profile image
Blackknight1989

EGFR is a highly imprecise lab value. It can gyrate several numerical values from hour to hour. If you do any research on reputable websites you’ll find the eGFR measurement is often only accurate to with 30% of 80% of the true value. I’m no math wiz but only a 50% approximation of what actual levels truly are. It is a measure of kidney DAMAGE, so it helps you and the doc track whether you are continuing to damage nephrons. Keep a chart of your values and find out your triggers. As long as you feel as normal and doc is okay, no worries. Link:

niddk.nih.gov/health-inform...

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