Anonymous
09/13/2025 15:04
Subject: Re:Sudden onset water weight gain in 20 y.o.
Anonymous wrote:Anonymous wrote:This is OP. Her albumin is normal (4.5 g/dL), globulin also normal (1.7 g/dL) but a/g ratio is slightly high at 2.6. Doc said that was not abnormal. Total protein 6.2 g/fL and creatinine .51 mg/dL also slightly low but doc said no worries.
Will take all of this to cardiology and see about a hepatology.
Person with autoimmune kidney disease. I have normal globulin and a/g ratio. Normal for latter is 2.5, so 2.6 really doesn't mean anything.
In nephrotic syndrome, which your DD may have, protein in urine occurs before you get low protein in the blood. Given the borderline blood protein, she could be in the early stages, the best time to catch this. She needs the urine test as soon as you can get it. Am among those recommending the ER so she can get into a specialist quickly.
I have no idea why you are thinking of a hepatologist. Perhaps you meant nephrologist? Even with my test results it took me two months to get into one and then only because he was my husband's nephrologist. If the ER had diagnosed me with a kidney problem instead of a heart problem, I would have seen the nephrologist within a week (the time it took for me to get into the cardiologist they did refer me to.)
This is very helpful about the correct types of specialists and time it took to get in to see them. Thank you
Anonymous
09/13/2025 15:03
Subject: Sudden onset water weight gain in 20 y.o.
Does she monitor blood pressure and pulse? Irregular heartbeats?
I don't know what the ER reluctance is. Does she have any discomfort in her chest? Out of breath?
Take her this afternoon before the nighttime rush. She could have a serious cardiac issue that's progressing.
I don't know what the ER reluctance is. Does she have any discomfort in her chest? Out of breath?
Take her this afternoon before the nighttime rush. She could have a serious cardiac issue that's progressing.
Anonymous
09/13/2025 15:01
Subject: Re:Sudden onset water weight gain in 20 y.o.
Anonymous wrote:Anonymous wrote:This is OP. Her albumin is normal (4.5 g/dL), globulin also normal (1.7 g/dL) but a/g ratio is slightly high at 2.6. Doc said that was not abnormal. Total protein 6.2 g/fL and creatinine .51 mg/dL also slightly low but doc said no worries.
Will take all of this to cardiology and see about a hepatology.
The fact that her BW is coming back normal while her symptoms remain so severe is actually a cause for concern, not the other way around. It means something is getting missed. I've seen PCPs do this before, serially chasing diagnoses they are not qualified to chase, and the consequences can be severe. Happened to me, though much less dire situation. I'm not trying to scare you, but my father is a cardiologist and he has seen patients die when a PCP overrode his recommendation to get an immediate cardiac work up in favor of whatever the PCP decided was more urgent or a less aggressive way to approach things.
In a situation like your DD's a full workup is the right thing to do medically, and in the US the fastest way to get this is going to the ER. Waiting months for various specialists can be harmful, and the care still won't be coordinated.
She has had POTS her whole life, and presumably treating with salt pills her whole life. This has never happened before, so the assumption that it is somehow related to something she's been doing her whole life without any obvious difference now is very odd.
Thank you PP. Your insights are very helpful. I should add that DD did have some weight on her in the age 12-13 years. I chalked it up to puberty because I myself got pudgy, then thinned out in high school. I never reverted to weight gain. Reflecting back, she did slim down rather quickly over the course of a year at about age 14, but no one raised it as an issue. She was diagnosed with POTS during that window when she was heavier, followed exercise and POTS management protocols and had been slender and relatively fit for about 6 years. Now she has had this flare and sudden edema.
Anonymous
09/13/2025 14:53
Subject: Re:Sudden onset water weight gain in 20 y.o.
Anonymous wrote:Anonymous wrote:This is OP. Her albumin is normal (4.5 g/dL), globulin also normal (1.7 g/dL) but a/g ratio is slightly high at 2.6. Doc said that was not abnormal. Total protein 6.2 g/fL and creatinine .51 mg/dL also slightly low but doc said no worries.
Will take all of this to cardiology and see about a hepatology.
Person with autoimmune kidney disease. I have normal globulin and a/g ratio. Normal for latter is 2.5, so 2.6 really doesn't mean anything.
In nephrotic syndrome, which your DD may have, protein in urine occurs before you get low protein in the blood. Given the borderline blood protein, she could be in the early stages, the best time to catch this. She needs the urine test as soon as you can get it. Am among those recommending the ER so she can get into a specialist quickly.
I have no idea why you are thinking of a hepatologist. Perhaps you meant nephrologist? Even with my test results it took me two months to get into one and then only because he was my husband's nephrologist. If the ER had diagnosed me with a kidney problem instead of a heart problem, I would have seen the nephrologist within a week (the time it took for me to get into the cardiologist they did refer me to.)
Last urinalysis was done July 2025. A few have been done over the past four years - none have shown protein in urine. These were just basic urinalysis. Not sure if there is something more detailed that should be requested.
Anonymous
09/13/2025 14:52
Subject: Re:Sudden onset water weight gain in 20 y.o.
Anonymous wrote:This is OP. Her albumin is normal (4.5 g/dL), globulin also normal (1.7 g/dL) but a/g ratio is slightly high at 2.6. Doc said that was not abnormal. Total protein 6.2 g/fL and creatinine .51 mg/dL also slightly low but doc said no worries.
Will take all of this to cardiology and see about a hepatology.
The fact that her BW is coming back normal while her symptoms remain so severe is actually a cause for concern, not the other way around. It means something is getting missed. I've seen PCPs do this before, serially chasing diagnoses they are not qualified to chase, and the consequences can be severe. Happened to me, though much less dire situation. I'm not trying to scare you, but my father is a cardiologist and he has seen patients die when a PCP overrode his recommendation to get an immediate cardiac work up in favor of whatever the PCP decided was more urgent or a less aggressive way to approach things.
In a situation like your DD's a full workup is the right thing to do medically, and in the US the fastest way to get this is going to the ER. Waiting months for various specialists can be harmful, and the care still won't be coordinated.
She has had POTS her whole life, and presumably treating with salt pills her whole life. This has never happened before, so the assumption that it is somehow related to something she's been doing her whole life without any obvious difference now is very odd.
Anonymous
09/13/2025 14:48
Subject: Sudden onset water weight gain in 20 y.o.
Anonymous wrote:Anonymous wrote:Anonymous wrote:Anonymous wrote:OP what people are trying to gently tell you and DD is that the incremental approach your doctor is leading you down is not appropriate. This is not POTS related.
DD either has serious kidney disease or a heart issue like congestive heart failure or cardiomyopathy.
Please go to the ER and thus she will get specialists asap. Sibley, VHC. Not some minute clinic.
Agreed. This is actually ER-worthy.
This is OP. I was typing the other post and now seeing this one. Thanks for this input. I have been very concerned about how this is progressing and was surprised her own PCP isn’t actions with more urgency. The new cardiologist can’t see her until October. I agree this is more urgent than that.
Has her pcp seen her in person? Or all ordered online and phone appointments?
In person, as recently again as of this past Wednesday.
Anonymous
09/13/2025 14:47
Subject: Re:Sudden onset water weight gain in 20 y.o.
Anonymous wrote:Anonymous wrote:This is OP. Her albumin is normal (4.5 g/dL), globulin also normal (1.7 g/dL) but a/g ratio is slightly high at 2.6. Doc said that was not abnormal. Total protein 6.2 g/fL and creatinine .51 mg/dL also slightly low but doc said no worries.
Will take all of this to cardiology and see about a hepatology.
make sure they also do urine protein/creatinine ratio--the most sensitive test if one is loosing protein in kidneys-which would cause swelling, happens in autoimmune illness,
eGFR CKD is 136, which shows on the report as normal. Not sure is that’s derivative of the ratio referred to above.
Anonymous
09/13/2025 14:47
Subject: Re:Sudden onset water weight gain in 20 y.o.
Anonymous wrote:This is OP. Her albumin is normal (4.5 g/dL), globulin also normal (1.7 g/dL) but a/g ratio is slightly high at 2.6. Doc said that was not abnormal. Total protein 6.2 g/fL and creatinine .51 mg/dL also slightly low but doc said no worries.
Will take all of this to cardiology and see about a hepatology.
Person with autoimmune kidney disease. I have normal globulin and a/g ratio. Normal for latter is 2.5, so 2.6 really doesn't mean anything.
In nephrotic syndrome, which your DD may have, protein in urine occurs before you get low protein in the blood. Given the borderline blood protein, she could be in the early stages, the best time to catch this. She needs the urine test as soon as you can get it. Am among those recommending the ER so she can get into a specialist quickly.
I have no idea why you are thinking of a hepatologist. Perhaps you meant nephrologist? Even with my test results it took me two months to get into one and then only because he was my husband's nephrologist. If the ER had diagnosed me with a kidney problem instead of a heart problem, I would have seen the nephrologist within a week (the time it took for me to get into the cardiologist they did refer me to.)
Anonymous
09/13/2025 14:41
Subject: Sudden onset water weight gain in 20 y.o.
Anonymous wrote:Anonymous wrote:Anonymous wrote:OP what people are trying to gently tell you and DD is that the incremental approach your doctor is leading you down is not appropriate. This is not POTS related.
DD either has serious kidney disease or a heart issue like congestive heart failure or cardiomyopathy.
Please go to the ER and thus she will get specialists asap. Sibley, VHC. Not some minute clinic.
Agreed. This is actually ER-worthy.
This is OP. I was typing the other post and now seeing this one. Thanks for this input. I have been very concerned about how this is progressing and was surprised her own PCP isn’t actions with more urgency. The new cardiologist can’t see her until October. I agree this is more urgent than that.
Has her pcp seen her in person? Or all ordered online and phone appointments?
Anonymous
09/13/2025 14:31
Subject: Re:Sudden onset water weight gain in 20 y.o.
Anonymous wrote:Anonymous wrote:This is OP. Her albumin is normal (4.5 g/dL), globulin also normal (1.7 g/dL) but a/g ratio is slightly high at 2.6. Doc said that was not abnormal. Total protein 6.2 g/fL and creatinine .51 mg/dL also slightly low but doc said no worries.
Will take all of this to cardiology and see about a hepatology.
make sure they also do urine protein/creatinine ratio--the most sensitive test if one is loosing protein in kidneys-which would cause swelling, happens in autoimmune illness,
Person with autoimmune kidney disease. This is correct.
They usually do not run it unless other tests point to a kidney-related protein problem. High end of normal is 184; mine is 3000.
Anonymous
09/13/2025 14:27
Subject: Sudden onset water weight gain in 20 y.o.
Anonymous wrote:Anonymous wrote:Anonymous wrote:OP what people are trying to gently tell you and DD is that the incremental approach your doctor is leading you down is not appropriate. This is not POTS related.
DD either has serious kidney disease or a heart issue like congestive heart failure or cardiomyopathy.
Please go to the ER and thus she will get specialists asap. Sibley, VHC. Not some minute clinic.
Agreed. This is actually ER-worthy.
This is OP. I was typing the other post and now seeing this one. Thanks for this input. I have been very concerned about how this is progressing and was surprised her own PCP isn’t actions with more urgency. The new cardiologist can’t see her until October. I agree this is more urgent than that.
This is why a lot of patients end up in the ER, actually. Sometimes it's because there's a question as to whether symptoms are life-threatening (this is your daughter's case), and sometimes it's because patients can't get to specialists in a timely manner outside the ER (also, perhaps, your daughter's case).
Best of luck, OP.
Anonymous
09/13/2025 14:21
Subject: Sudden onset water weight gain in 20 y.o.
Anonymous wrote:Anonymous wrote:OP what people are trying to gently tell you and DD is that the incremental approach your doctor is leading you down is not appropriate. This is not POTS related.
DD either has serious kidney disease or a heart issue like congestive heart failure or cardiomyopathy.
Please go to the ER and thus she will get specialists asap. Sibley, VHC. Not some minute clinic.
Agreed. This is actually ER-worthy.
This is OP. I was typing the other post and now seeing this one. Thanks for this input. I have been very concerned about how this is progressing and was surprised her own PCP isn’t actions with more urgency. The new cardiologist can’t see her until October. I agree this is more urgent than that.
Anonymous
09/13/2025 14:20
Subject: Re:Sudden onset water weight gain in 20 y.o.
Anonymous wrote:This is OP. Her albumin is normal (4.5 g/dL), globulin also normal (1.7 g/dL) but a/g ratio is slightly high at 2.6. Doc said that was not abnormal. Total protein 6.2 g/fL and creatinine .51 mg/dL also slightly low but doc said no worries.
Will take all of this to cardiology and see about a hepatology.
make sure they also do urine protein/creatinine ratio--the most sensitive test if one is loosing protein in kidneys-which would cause swelling, happens in autoimmune illness,
Anonymous
09/13/2025 14:18
Subject: Re:Sudden onset water weight gain in 20 y.o.
This is OP. Her albumin is normal (4.5 g/dL), globulin also normal (1.7 g/dL) but a/g ratio is slightly high at 2.6. Doc said that was not abnormal. Total protein 6.2 g/fL and creatinine .51 mg/dL also slightly low but doc said no worries.
Will take all of this to cardiology and see about a hepatology.
Will take all of this to cardiology and see about a hepatology.
Anonymous
09/13/2025 14:12
Subject: Sudden onset water weight gain in 20 y.o.
Anonymous wrote:OP what people are trying to gently tell you and DD is that the incremental approach your doctor is leading you down is not appropriate. This is not POTS related.
DD either has serious kidney disease or a heart issue like congestive heart failure or cardiomyopathy.
Please go to the ER and thus she will get specialists asap. Sibley, VHC. Not some minute clinic.
Agreed. This is actually ER-worthy.