Sudden onset water weight gain in 20 y.o.

[Anonymous]

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]

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

[Anonymous]

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?

[Anonymous]

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]

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

[Anonymous]

I'm the PP with the father who had generalized edema and who was admitted to hospital for an entire week.

At first, they did not want to admit him! My mother spent hours in the ER waiting for a decision on that. They ran all kinds of bloodwork and had to consult a higher-up who decided to admit, probably based on age and known cardiac insufficiency. He had gained 15lbs of water in a few weeks. Once they were able to reduce the edema by a combination of diuretics and high-protein diet for his malnutrition, he was discharged, but the thing is, none of his diagnosis fully explain all his symptoms and abnormal bloodwork. We suspect something systemic, like metastasis, or a serious auto-immune disease.

I'm sorry your daughter was not admitted, OP. At least you tried.

I would be wary of a specialist for girls. That seems like quackery. Whatever she has, it's serious, and needs real specialists.

I would stick with her meds for now, and try to get a second opinion ASAP with a second PCP.

Please also do not discount the help ChatGPT can give you. I inputed my father's labwork and symptoms as accurately as I could, and it suggested many possible avenues to explore that were later confirmed when his doctors ordered various exams to explore those same avenues. I have been very impressed with how good it is. Make use of it!

Please update up when you can. I hope your daughter feels better soon. If her edema gets worse and she has trouble breathing, then that's a lung infiltration and she needs to call 911 immediately.

[Anonymous]

Thanks everyone. I’m not sure where even to begin to address this.

First, DD has been going to the PCP to be treated for the edema. They do the bare minimum labs and prescribed a light, potassium sparing diuretic. Have to tread carefully because she has POTS. They aren’t proactive and don’t even seem that effective. For example, they don’t seem to know how to fill out an employer-required form for work accommodation. She had a follow up with them next Monday to monitor the diuretic.

We got a recommendation for new primary care, which is this full-pay pediatrician who is familiar with treating POTS. Will see how it goes on Wednesday before we commit.

Also scheduled with new POTS specialist cardiologist but earliest she can be seen is third week of October. She’s also on the waitlist for an appointment to open up.

BIL happens to be a geriatric physician. He isn’t alarmed by the edema and thinks is simply due to increased water and salt intake. He supported the idea of a light diuretic. He thinks the other labs seem fine for her age etc. For example low RBC can be explained due to menstruation.

So, the plan so far is to see if new primary care can order/refer for the echo, US and neph and other more detailed labs, and possibly get DD into a good cardiologist sooner.

[Anonymous]

OP again. According to Chat GPT, symptoms point to POTS (already diagnosed), Mast Cell activation syndrome, and Chronic Fatigue Syndrome. The conditions seem quite similar, and not much by way of treatment options. Just managing symptoms.

Hypothyroidism also came up, but DD’s TSH is normal.

Sudden edema by itself could be caused by heart or kidney problems but initial tests all are normal. Understood that we need to dig deeper with new PCP and cardiologist.

[Anonymous]

She is 20 ffs. She doesn't need a pediatrician.

[Anonymous]

OP, it's possible these days to order labs yourself directly through the provider (i.e. Labcorp) or there are online providers like
Function health (for $500 they run tons of labs). You might consider this road just to rule serious things out.

[Anonymous]

Anonymous wrote:OP again. According to Chat GPT, symptoms point to POTS (already diagnosed), Mast Cell activation syndrome, and Chronic Fatigue Syndrome. The conditions seem quite similar, and not much by way of treatment options. Just managing symptoms.

Hypothyroidism also came up, but DD’s TSH is normal.

Sudden edema by itself could be caused by heart or kidney problems but initial tests all are normal. Understood that we need to dig deeper with new PCP and cardiologist.

None of those disorders would cause the sudden edema.

What blood work did they do beyond a complete blood count? For a kidney problem she needs a comprehensive (not basic) metabolic panel and a urine test. These are common, cheap tests, and if they are negative, you are kind of done with ruling out a kidney problem and you can focus on the heart angle.

If the doctors won't order these really basic tests, order them online from Quest or Labcorp and have DD get the blood draw done at their lab.

[Anonymous]

^^meant to say blood draw and urine test...

[Anonymous]

Anonymous wrote:Thanks everyone. I’m not sure where even to begin to address this.

First, DD has been going to the PCP to be treated for the edema. They do the bare minimum labs and prescribed a light, potassium sparing diuretic. Have to tread carefully because she has POTS. They aren’t proactive and don’t even seem that effective. For example, they don’t seem to know how to fill out an employer-required form for work accommodation. She had a follow up with them next Monday to monitor the diuretic.

We got a recommendation for new primary care, which is this full-pay pediatrician who is familiar with treating POTS. Will see how it goes on Wednesday before we commit.

Also scheduled with new POTS specialist cardiologist but earliest she can be seen is third week of October. She’s also on the waitlist for an appointment to open up.

BIL happens to be a geriatric physician. He isn’t alarmed by the edema and thinks is simply due to increased water and salt intake. He supported the idea of a light diuretic. He thinks the other labs seem fine for her age etc. For example low RBC can be explained due to menstruation.

So, the plan so far is to see if new primary care can order/refer for the echo, US and neph and other more detailed labs, and possibly get DD into a good cardiologist sooner.

Has she increased her water and salt intake? It didn't sound like it from your previous posts.

[Anonymous]

I second the idea to pay for testing yourself. I used LabCorp for my daughter because it was easier than getting her in to the doctor quickly and then when she had the appointment, she had test results to share with the doc.

[Anonymous]

That’s a great idea to order tests ourselves. I have been looking tonight for a few more cardiologists we can call to try to get in sooner.

One PP had asked if DD had increased salt and water intake. She is taking a few salt pills per day and adds salt to food. She drinks a lot of water. This helps mitigate POTS symptoms, but undoubtedly is not helping when it comes to water retention.