Do you know it is edema and not just weight gain?

Anonymous wrote:

Anonymous wrote:This is OP. Daughter went to the ER yesterday at my urging. Basic labs (including thyroid) and EKG were normal so they wouldn’t pursue or refer for further tests like echo, ultrasound around lungs, nephrology work up etc. They didn’t have an answer or concern about the 20 lb water weight gain, other than they noted edema BLE in her chart. The primary complaint they noted is anxiety. This has been our experience with POTS for the past 8 or so years. No answers and mostly all in the head (except that there is in fact edema and 20 lb of unexplained weight gain in 2 months).

This is infuriating. Did they really say that edema and 20lbs of weight gain is no big deal? Or that they don't have an answer for it. She needs a doctor who takes her seriously, and/or an advocate who refuses to leave until they do a proper work up. Of course she's anxious...she has gained 20lbs of water weight with not explanation!!

Did the basic labs include liver and kidney funciton?

I'm not an MD, so take this with that caveat. But I've spent a lot of time around medical professionals (both parents are MDs), and I'm a scientist who is used to analyzing data. The fact that they are using normal EKG and BW are gates for further investigation sounds insane given that your DD has a visible symptom that is best explained by cardiovascular or kidney issues. AFAIK there is no evidence that this kind of edema can be associated with POTS or the salt pills she is taking, so the POTS seems like it's unrelated.

I'm just looking at the information you are sharing, and it's not logical. I have been in a medical situation like this, where doctors (even fancy specialists) were telling me things that just sounded illogical. I had an eye infection that wasn't responding to anything, and a doctor said, 'Well, we've tried a lot of things so let's just stop all treatment and see if that helps." Luckily a family friend who is an eye doctor was helping me, and he was like that's the opposite of what to do, and he took over my care remotely. To me, just looking at facts, what the ER docs are seeing sounds like the opposite of what to do. There is no rule that says that a normal EKG can't be associate with an abnormal echo. And if there is an indication of potential heart disease (severe edema), then further testing should be warranted.

Anonymous wrote:This is OP. Daughter went to the ER yesterday at my urging. Basic labs (including thyroid) and EKG were normal so they wouldn’t pursue or refer for further tests like echo, ultrasound around lungs, nephrology work up etc. They didn’t have an answer or concern about the 20 lb water weight gain, other than they noted edema BLE in her chart. The primary complaint they noted is anxiety. This has been our experience with POTS for the past 8 or so years. No answers and mostly all in the head (except that there is in fact edema and 20 lb of unexplained weight gain in 2 months).

This is infuriating. Did they really say that edema and 20lbs of weight gain is no big deal? Or that they don't have an answer for it. She needs a doctor who takes her seriously, and/or an advocate who refuses to leave until they do a proper work up. Of course she's anxious...she has gained 20lbs of water weight with not explanation!!

Did the basic labs include liver and kidney funciton?

^^Or bring her back home and go to a good ER here.

Anonymous wrote:

Anonymous wrote:OP, at this point, I'd get in the car (or on the train / plane) and go to DD and go back to ER with daughter. Mine is 19 also has POTS, and if that was the message I received from her, I'd be on the train to NY asap, because they aren't taking her seriously.

Thanks PP. I can see the notes, labs etc in her My Chart. The basic gating tests came back normal, so cannot pass Go via the ER route. I was on the phone with the doctor while she was there and requested these things (echo, US, neph labs). There is no mention of any of this in the treatment notes. They did note that she was tachycardic (pulse 115) when she came in, but it later resolved and seems they chalked that up to anxiety.

She does have an appointment on Wednesday with a doctor who specializes in treating girls up to age 25 for conditions impacting that age group. Not covered by insurance but hoping we can get some answers and more test referrals from this approach.

I loathe that teenage girls are so dismissed by doctors as having a real medical problem that is not gyno related. Everything to them is psychological including the gyno issues. Otherwise young women are in their peak of health and, thus, by definition have no real medical problems.

I was the first PP to say get on plane and go there. I think you should still do this and see this doctor on Wednesday with her.

I am a little wary about a specialist for girls under 25 for conditions impacting them. Edema that could be caused heart, kidney or lung problems are simply not in that bucket in most doctors' minds. I am quite sure that their view of conditions that impact females in that age group are things such as anxiety (you've already see that), other psychological conditions, and gyno problems.

But go with her and assess for yourself. If you are not satisfied, go back to the ER and raise a big fuss.

Anonymous wrote:OP, at this point, I'd get in the car (or on the train / plane) and go to DD and go back to ER with daughter. Mine is 19 also has POTS, and if that was the message I received from her, I'd be on the train to NY asap, because they aren't taking her seriously.

Thanks PP. I can see the notes, labs etc in her My Chart. The basic gating tests came back normal, so cannot pass Go via the ER route. I was on the phone with the doctor while she was there and requested these things (echo, US, neph labs). There is no mention of any of this in the treatment notes. They did note that she was tachycardic (pulse 115) when she came in, but it later resolved and seems they chalked that up to anxiety.

She does have an appointment on Wednesday with a doctor who specializes in treating girls up to age 25 for conditions impacting that age group. Not covered by insurance but hoping we can get some answers and more test referrals from this approach.

OP, at this point, I'd get in the car (or on the train / plane) and go to DD and go back to ER with daughter. Mine is 19 also has POTS, and if that was the message I received from her, I'd be on the train to NY asap, because they aren't taking her seriously.

This is OP. Daughter went to the ER yesterday at my urging. Basic labs (including thyroid) and EKG were normal so they wouldn’t pursue or refer for further tests like echo, ultrasound around lungs, nephrology work up etc. They didn’t have an answer or concern about the 20 lb water weight gain, other than they noted edema BLE in her chart. The primary complaint they noted is anxiety. This has been our experience with POTS for the past 8 or so years. No answers and mostly all in the head (except that there is in fact edema and 20 lb of unexplained weight gain in 2 months).

OP--Any follow up?

If it's a cardiac or kidney issue not POTS only the estra extra salt may not be a good thing.
I hope OP and DD get help.
OP let us know what happens.

Anonymous wrote:

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.

Edema and pudginess are not the same thing. Rapid increase on the scale and swollen ankles suggest edema, not fat/weight gain.

You keep citing tests from July and weeks ago. They are not an accurate picture of what's going on now.

Please get her to the ER.

Anonymous wrote:

Anonymous wrote:20 pounds of water is two gallons her body cannot eliminate and is potentially sloshing around her cardiovascular system and lungs.
Has she even had a recent EKG? The ER will do one in triage.

Two EKGs done in July 2025 were normal. She does have low blood pressure and, if understand correctly, low blood volume due to POTS. Agree with everyone, I’m trying to get her to go in to the urgent clinic associated with the local university hospital ER where she is.

I fully understand where your DD is coming from and what you are navigating yourself. This is scary, and ER's are awful places...especially on weekends. But let me reflect back to you a few things.

Your DD has shared with you all the details of her care and labwork. This suggests that she is concerned and wants help with this situation. You know this is well outside of normal, even though she has a chronic disease. You don't have faith in her PCP, and you are trying to direct her care from far away. You have gotten to the point where you are asking random internet strangers for advice on how to do this.

The situation is very serious, and your DD isn't getting the care she needs. Not to be alarming, but if kidney function is abnormal, it can lead to blood toxins that might even be impacting how your DD thinks. If you can convince her to go to the ER on her own, that would be great. Otherwise you might need to drive/fly out there and take her. I'm pretty sure (having been a stubborn college kid myself), that if you showed up she would not resist going.

Lupus perhaps

Fly to wherever she is and take her to the ER. As PPs have said, this is likely either a reasonably serious heart or kidney issue. In either case, it need intensive immediate medical attention.

This is a case where a parent has to step in, even if they are the total opposite of a helicopter parent.