How can I get my cardiologist to take me seriously and to do more?
September 10, 2023 6:19 AM Subscribe
I do not trust my cardiologist to do more than the bare minimum to treat my symptoms or to investigate possible damage. I'm not OK with this. Help me find the right words to push for this to happen. I’m currently suffering from air hunger, palpitations, tachycardia and chest pain as side effects of persistent hypophosphatemia following iron infusion (HPP). My serum phosphate levels are stable but the endocrinologist managing the HPP has explained (in more biochemical detail than I can relay here) that what’s happening at a serum level isn’t necessarily what’s happening at a cellular level in this condition which would explain why, despite ‘normal’ levels, I’m still experiencing debilitating cardiac symptoms. I'm increasingly concerned about damage to my heart, but don't have a lot of faith in my cardiologist to do much about this.
Note: I know you Metafilter is not my doctor and I’m not asking for medical advice per se, more for communication advice and suggestions about what to ask form. Yes, I would like a different cardiologist but that's a 12 week wait and I have an appointment with the current one tomorrow.
The actual HPP itself is being managed capably by an endocrinologist, but the catch is the only real treatment seems to be phosphate, calcitriol to help absorb the phosphate, and time. It has been four months since the iron infusion. This could go on for up to 18 months. It is, at any rate, persistent, and so are the symptoms. While my body is sorting out its phosphate levels, the cardiac symptoms are REALLY concerning me. Not only because they are debilitating in and of themselves, but because I’m worried that the duration of serious disruption to my electrolytes is on some level actually causing damage to my heart. This is a thing with HPP, although whether it’s happening to me or not, I don’t know.
The cardiologist has done an ECG, an ultrasound and I’ve worn a Holter monitor for a few days. I’m assuming none of these found anything significant because I haven’t been contacted about the results. I have a review tomorrow afternoon.
I do not trust the cardiologist to do more than say everything is fine and send me on my way. A couple of years ago, I saw her for (relatively minor compared to the HPP) palpitations and tachycardia. Had an ECG, wore a Holter monitor, had an ultrasound, and was told everything was fine, that I had sinus tachycardia and skipped beats, and to go away and do more exercise. Despite the fact that I was already doing 6+ hours of vigorous exercise weekly. It turned out that what I had was estrogen deficiency. But I had to suffer through nearly two years of palpitations before other severe symptoms of menopause put me on MHT and lo, my palpitations disappeared completely after two days – TWO DAYS – of Estrogel, never to return. (Til the HPP drama now.) It seems there are estrogen receptors on the sinoatrial node. And when estrogen levels drop, palpitations can ensue and are in fact one of the most common symptoms of menopause. I am livid that no investigation or suggestion, other than exercise, was made. I was 100 per cent of an age when this should have been blindingly obvious question to ask, particularly as the condition is so common. Hence my concern that there could be further investigations or treatments available or possible that won’t be suggested.
Mefites, what are the words I can use tomorrow at this appointment to make sure she takes this seriously and that I’m not shoved out the door with ‘everything is fine byeeee’ again. Because everything is NOT FINE. If you can think of actual further investigations I might specifically ask for, please do suggest these – I have no idea.
Despite my frustration, I want to keep my tone polite and collaborative, not because this particular doctor deserves it, but because in my experience it’s more effective. I literally have no idea what to ask for though. And I'm exhausted and sick which isn't helping me be my most articulate self!
Note: I know you Metafilter is not my doctor and I’m not asking for medical advice per se, more for communication advice and suggestions about what to ask form. Yes, I would like a different cardiologist but that's a 12 week wait and I have an appointment with the current one tomorrow.
The actual HPP itself is being managed capably by an endocrinologist, but the catch is the only real treatment seems to be phosphate, calcitriol to help absorb the phosphate, and time. It has been four months since the iron infusion. This could go on for up to 18 months. It is, at any rate, persistent, and so are the symptoms. While my body is sorting out its phosphate levels, the cardiac symptoms are REALLY concerning me. Not only because they are debilitating in and of themselves, but because I’m worried that the duration of serious disruption to my electrolytes is on some level actually causing damage to my heart. This is a thing with HPP, although whether it’s happening to me or not, I don’t know.
The cardiologist has done an ECG, an ultrasound and I’ve worn a Holter monitor for a few days. I’m assuming none of these found anything significant because I haven’t been contacted about the results. I have a review tomorrow afternoon.
I do not trust the cardiologist to do more than say everything is fine and send me on my way. A couple of years ago, I saw her for (relatively minor compared to the HPP) palpitations and tachycardia. Had an ECG, wore a Holter monitor, had an ultrasound, and was told everything was fine, that I had sinus tachycardia and skipped beats, and to go away and do more exercise. Despite the fact that I was already doing 6+ hours of vigorous exercise weekly. It turned out that what I had was estrogen deficiency. But I had to suffer through nearly two years of palpitations before other severe symptoms of menopause put me on MHT and lo, my palpitations disappeared completely after two days – TWO DAYS – of Estrogel, never to return. (Til the HPP drama now.) It seems there are estrogen receptors on the sinoatrial node. And when estrogen levels drop, palpitations can ensue and are in fact one of the most common symptoms of menopause. I am livid that no investigation or suggestion, other than exercise, was made. I was 100 per cent of an age when this should have been blindingly obvious question to ask, particularly as the condition is so common. Hence my concern that there could be further investigations or treatments available or possible that won’t be suggested.
Mefites, what are the words I can use tomorrow at this appointment to make sure she takes this seriously and that I’m not shoved out the door with ‘everything is fine byeeee’ again. Because everything is NOT FINE. If you can think of actual further investigations I might specifically ask for, please do suggest these – I have no idea.
Despite my frustration, I want to keep my tone polite and collaborative, not because this particular doctor deserves it, but because in my experience it’s more effective. I literally have no idea what to ask for though. And I'm exhausted and sick which isn't helping me be my most articulate self!
I agree with cotton dress sock above. In the case you mentioned, from a lay perspective based on my own experience with heart issues, the cardiologist’s scope was to determine if your symptoms were a heart issue. They weren’t exactly so it was on your PCP to keep referring/investigating. I know it’s super annoying.
Similarly, if this investigation doesn’t show anything definitely keep pursuing it with your endocrinologist. In the meantime though questions and phrases for your cardio would be:
- “this is impacting my quality of life a lot” - this is kind of the “please pay attention to the person before you” phrase in a specialist’s day.
- I’d ask about your concern like “I’m concerned about the long term impact as well as the debilitation I’m having and my endocrinologist said…”
- you could ask if you should get/the cardiologist should review your blood tests
Ultimately though, here’s what I (again, not a doctor) see in your post. You’re angry at the cardiologist but both issues should be managed by other doctors. Maybe the long term answer is another endocrinologist opinion, or a medication review.
I know it’s frustrating; both my MIL and I have been caught between specialists. My understanding from my cardiologist, who has now kicked my care back to my PCP, is that once a condition that he would want to manage is ruled out (or in my case once post-Covid inflammation went down things resolved), the best person to manage it is the person managing the OG issue. Same with my MIL’s kidney specialist/cardiologist duo looking at blood pressure meds - the medication management went back to the nephrologist.
posted by warriorqueen at 9:29 AM on September 10, 2023 [4 favorites]
Similarly, if this investigation doesn’t show anything definitely keep pursuing it with your endocrinologist. In the meantime though questions and phrases for your cardio would be:
- “this is impacting my quality of life a lot” - this is kind of the “please pay attention to the person before you” phrase in a specialist’s day.
- I’d ask about your concern like “I’m concerned about the long term impact as well as the debilitation I’m having and my endocrinologist said…”
- you could ask if you should get/the cardiologist should review your blood tests
Ultimately though, here’s what I (again, not a doctor) see in your post. You’re angry at the cardiologist but both issues should be managed by other doctors. Maybe the long term answer is another endocrinologist opinion, or a medication review.
I know it’s frustrating; both my MIL and I have been caught between specialists. My understanding from my cardiologist, who has now kicked my care back to my PCP, is that once a condition that he would want to manage is ruled out (or in my case once post-Covid inflammation went down things resolved), the best person to manage it is the person managing the OG issue. Same with my MIL’s kidney specialist/cardiologist duo looking at blood pressure meds - the medication management went back to the nephrologist.
posted by warriorqueen at 9:29 AM on September 10, 2023 [4 favorites]
It looks to me like you’re in Australia, and I don’t know rules around patient information there. In the United States, records from these tests belong to you and must be disclosed to you when you ask. If your country has similar regulations, perhaps you could get a copy of your records to take to your endo, whom it sounds like you trust. (I don’t know if an endo would have fluency with Holter monitor readouts but it seems worth a try.)
I think you will be most successful if you have specific things you are asking for and can gauge success by whether you get them. You could try stating your feelings plainly, e.g. if you’re worried about a heart attack, say so: “I’ve heard that heart attacks are often missed in women because they present differently, and I’m worried about that happening here.” Or, if it’s limiting your life significantly, you could get specific about how: “The chest pain is making it difficult to sleep / work / go on walks.” I like warriorqueen’s words about quality of life. You may also get some mileage by asking questions: “What is your best guess about what’s going on? What else could it be? What tests would we do if we wanted to tell those two things apart? Assuming it is benign now, what signs or symptoms should I watch for that would let me know I should come back to see you again?”
If there are nonverbals happening that feel dismissive and disrespectful, I feel you for sure, but I’m not sure that that’s the kind of problem that’s responsive to direct intervention, alas.
posted by eirias at 9:39 AM on September 10, 2023 [3 favorites]
I think you will be most successful if you have specific things you are asking for and can gauge success by whether you get them. You could try stating your feelings plainly, e.g. if you’re worried about a heart attack, say so: “I’ve heard that heart attacks are often missed in women because they present differently, and I’m worried about that happening here.” Or, if it’s limiting your life significantly, you could get specific about how: “The chest pain is making it difficult to sleep / work / go on walks.” I like warriorqueen’s words about quality of life. You may also get some mileage by asking questions: “What is your best guess about what’s going on? What else could it be? What tests would we do if we wanted to tell those two things apart? Assuming it is benign now, what signs or symptoms should I watch for that would let me know I should come back to see you again?”
If there are nonverbals happening that feel dismissive and disrespectful, I feel you for sure, but I’m not sure that that’s the kind of problem that’s responsive to direct intervention, alas.
posted by eirias at 9:39 AM on September 10, 2023 [3 favorites]
It’s not clear what you want this cardiologist to do. It sounds like you’re looking for a similar “one weird trick” to what happened with estrogen replacement to fix what is currently wrong, but that may not exist.
One approach would be to say, “My endo is managing this condition by doing xyz. Is there anything you would recommend in addition to that or for symptom control?” If you’re already receiving the appropriate curative treatment, seeking some symptom control for cardiac symptoms would be appropriate for a cardiologist.
posted by jeoc at 10:35 AM on September 10, 2023 [4 favorites]
One approach would be to say, “My endo is managing this condition by doing xyz. Is there anything you would recommend in addition to that or for symptom control?” If you’re already receiving the appropriate curative treatment, seeking some symptom control for cardiac symptoms would be appropriate for a cardiologist.
posted by jeoc at 10:35 AM on September 10, 2023 [4 favorites]
I think you'll have the best luck with
a) scaling back what you want from this experience (this is the cardiologist, they have a narrow purview, you may have to bring this back to your PCP),
b) trying to avoid coming in to this with your own analysis of what is happening physiologically - which they are likely to respond negatively to,
c) as you say above: being polite but firm while asking a number of open-ended questions and making open-ended statements such as:
1) I am still feeling [name the symptoms] with [frequency] and [severity]. The worst is [worst symptom] which I'm having with [frequency]. Can you help me understand what could be causing these symptoms from a cardiac point of view? [And, after unsatisfying answer..] What else might trigger this symptom?
2) What do you suggest we try to reduce these symptoms?
3) What would be the next thing to try if that suggestion doesn't work?
3) Are there other tests or studies we haven't done yet that might help us understand this better?
4) Are there other specialists you think might be helpful for this?
5) [If doctor seems unconcerned] At what point should I be more concerned about this symptom/go to the ER?
Bring a notebook and pen, maybe a friend if you're comfortable, and don't let the doctor rush you out the door. If they do rush you, let them know "I have 3 more questions about this. Would it be better for me to email you or set up a follow up where we can continue the conversation?"
I suggest avoiding making specific conjectures about physiology. For example, avoid the statement, "I'm concerned the duration of serious disruption to my electrolytes is on some level actually causing damage to my heart." While your concern makes sense intuitively, from what you've shared here, your lab tests do not provide evidence the cardiologist is likely to find compelling, and also they may just dismiss you for defensiveness reasons. But here's another way to think about it: This person is not there to give you something. They are a consultant who has a narrow but powerful set of experiences and information to share. How can you get the most out of what they know instead of trying to get them to do something that they are not going to do?
posted by latkes at 10:39 AM on September 10, 2023 [11 favorites]
a) scaling back what you want from this experience (this is the cardiologist, they have a narrow purview, you may have to bring this back to your PCP),
b) trying to avoid coming in to this with your own analysis of what is happening physiologically - which they are likely to respond negatively to,
c) as you say above: being polite but firm while asking a number of open-ended questions and making open-ended statements such as:
1) I am still feeling [name the symptoms] with [frequency] and [severity]. The worst is [worst symptom] which I'm having with [frequency]. Can you help me understand what could be causing these symptoms from a cardiac point of view? [And, after unsatisfying answer..] What else might trigger this symptom?
2) What do you suggest we try to reduce these symptoms?
3) What would be the next thing to try if that suggestion doesn't work?
3) Are there other tests or studies we haven't done yet that might help us understand this better?
4) Are there other specialists you think might be helpful for this?
5) [If doctor seems unconcerned] At what point should I be more concerned about this symptom/go to the ER?
Bring a notebook and pen, maybe a friend if you're comfortable, and don't let the doctor rush you out the door. If they do rush you, let them know "I have 3 more questions about this. Would it be better for me to email you or set up a follow up where we can continue the conversation?"
I suggest avoiding making specific conjectures about physiology. For example, avoid the statement, "I'm concerned the duration of serious disruption to my electrolytes is on some level actually causing damage to my heart." While your concern makes sense intuitively, from what you've shared here, your lab tests do not provide evidence the cardiologist is likely to find compelling, and also they may just dismiss you for defensiveness reasons. But here's another way to think about it: This person is not there to give you something. They are a consultant who has a narrow but powerful set of experiences and information to share. How can you get the most out of what they know instead of trying to get them to do something that they are not going to do?
posted by latkes at 10:39 AM on September 10, 2023 [11 favorites]
Best answer: It turned out that what I had was estrogen deficiency. But I had to suffer through nearly two years of palpitations before other severe symptoms of menopause put me on MHT and lo, my palpitations disappeared completely after two days – TWO DAYS – of Estrogel, never to return. (Til the HPP drama now.)
I think you can bring this up with the doctor in a polite and collaborative way. Like other people suggested, specialists tend to be focused on their own knowledge base, so it can let you bring up the concern without pointing fingers and say you had normal cardiology test results before, and it turned out the underlying cause was something completely different that resolved quickly once that was addressed. So if the tests run now are normal, does she have a recommendation for your next steps? Does she think you should have more tests done with her or should you go see a specific kind of specialist? Back to the endocrinologist?
To be clear, I have no idea if that is an unusual symptom/resolution (maybe she should have referred you, maybe that's something PCPs do), but by explicitly giving her an out about the earlier issue and asking for her guidance, you're ideally not putting the doctor on the defensive and appealing to her expertise. As you point out, they may or may not deserve to have their ego massaged, but it can get you better results.
I think you can be explicit about your concerns about permanent damage, but you want to approach as trying to better understand what is going on with your body. It can be helpful to say you don't know if you're worries are especially likely, but since you had the prior experience of missing* something that seems easy you want to make sure you don't repeat the experience. Since these are new symptoms, if there is the potential for damage would it be too early to see evidence of it? Should you be monitored regularly? What kinda of changes in symptoms are red flags vs normal variation?
There probably aren't black and white answers to a lot of questions, but ideally there are some general guidelines that will be helpful or reassuring.
If you aren't already planning to ( as suggested before), bring a notebook and write everything down. It may also be good to write down all of your concerns and symptoms and any specific questions you think of prior to the appointment.
I'll also note that I've been at some doctors where they default to giving you results at your visit if you have one scheduled, unless it's something urgent (like go to the ER). Ideally if that's the case here and a change from their previous SOP, they'd tell you, but sometimes those updates get forgotten. Still, best to go prepared.
* just want to be clear I don't think you, OP, dropped the ball. Ideally one of your physicians would have helped guide you through a more thorough evaluation before. The phrasing here is meant to not put the doctor on the defensive.
posted by ghost phoneme at 12:22 PM on September 10, 2023 [3 favorites]
I think you can bring this up with the doctor in a polite and collaborative way. Like other people suggested, specialists tend to be focused on their own knowledge base, so it can let you bring up the concern without pointing fingers and say you had normal cardiology test results before, and it turned out the underlying cause was something completely different that resolved quickly once that was addressed. So if the tests run now are normal, does she have a recommendation for your next steps? Does she think you should have more tests done with her or should you go see a specific kind of specialist? Back to the endocrinologist?
To be clear, I have no idea if that is an unusual symptom/resolution (maybe she should have referred you, maybe that's something PCPs do), but by explicitly giving her an out about the earlier issue and asking for her guidance, you're ideally not putting the doctor on the defensive and appealing to her expertise. As you point out, they may or may not deserve to have their ego massaged, but it can get you better results.
I think you can be explicit about your concerns about permanent damage, but you want to approach as trying to better understand what is going on with your body. It can be helpful to say you don't know if you're worries are especially likely, but since you had the prior experience of missing* something that seems easy you want to make sure you don't repeat the experience. Since these are new symptoms, if there is the potential for damage would it be too early to see evidence of it? Should you be monitored regularly? What kinda of changes in symptoms are red flags vs normal variation?
There probably aren't black and white answers to a lot of questions, but ideally there are some general guidelines that will be helpful or reassuring.
If you aren't already planning to ( as suggested before), bring a notebook and write everything down. It may also be good to write down all of your concerns and symptoms and any specific questions you think of prior to the appointment.
I'll also note that I've been at some doctors where they default to giving you results at your visit if you have one scheduled, unless it's something urgent (like go to the ER). Ideally if that's the case here and a change from their previous SOP, they'd tell you, but sometimes those updates get forgotten. Still, best to go prepared.
* just want to be clear I don't think you, OP, dropped the ball. Ideally one of your physicians would have helped guide you through a more thorough evaluation before. The phrasing here is meant to not put the doctor on the defensive.
posted by ghost phoneme at 12:22 PM on September 10, 2023 [3 favorites]
it can let you bring up the concern without pointing fingers and say you had normal cardiology test results before, and it turned out the underlying cause was something completely different that resolved quickly once that was addressed. So if the tests run now are normal, does she have a recommendation for your next steps? Does she think you should have more tests done with her or should you go see a specific kind of specialist? Back to the endocrinologist?
This is the way.
posted by praemunire at 12:58 PM on September 10, 2023 [1 favorite]
This is the way.
posted by praemunire at 12:58 PM on September 10, 2023 [1 favorite]
> .. air hunger, palpitations, tachycardia and chest pain...
Obtain a fingertip pulse oximeter to see if you can correlate the feeling of air hunger with a reduced SpO2 level, like below 95%.
If you cannot correlate low SpO2 with your feelings of air hunger, you might consider a self-diagnosis of those symptoms as a panic attack, perhaps associated with your feelings that unaddressed cardiac damage is not being properly diagnosed and addressed.
I am not suggesting that your symptoms are not actual, not serious, not debilitating, or not terrifying. From my reading and at this distance, that cluster of symptoms you described seems better described as a panic attack than as hypophosphatemia.
There are some other coincidences that lead me to suggest this as a possibility, from two cardiac-related incidents in my partner's medical history and my own experience with chest pain.
posted by the Real Dan at 1:00 PM on September 10, 2023 [3 favorites]
Obtain a fingertip pulse oximeter to see if you can correlate the feeling of air hunger with a reduced SpO2 level, like below 95%.
If you cannot correlate low SpO2 with your feelings of air hunger, you might consider a self-diagnosis of those symptoms as a panic attack, perhaps associated with your feelings that unaddressed cardiac damage is not being properly diagnosed and addressed.
I am not suggesting that your symptoms are not actual, not serious, not debilitating, or not terrifying. From my reading and at this distance, that cluster of symptoms you described seems better described as a panic attack than as hypophosphatemia.
There are some other coincidences that lead me to suggest this as a possibility, from two cardiac-related incidents in my partner's medical history and my own experience with chest pain.
posted by the Real Dan at 1:00 PM on September 10, 2023 [3 favorites]
Response by poster: Thanks everyone. It's a real between specialists nightmare: problem caused by haematology (infusion), condition managed by endocrinology / nephrology (phosphate dumping), symptoms are cardiac - and need cardiac management. The endocrinologist has no more tricks in the toolbox, the cardiologist needs to investigate and manage the symptoms and then correspond with the endo about it.
Suggestions about panic attacks and characterisation of damage to my heart as 'conjecture' are beyond unhelpful. Air hunger is a documented symptom of HPP - muscles need phosphate to contract. Including your diaphragm and heart. Damage to physiology in persistent HPP is not wild guesswork, it's a documented research finding. Sadly I think I am at the 'bring my husband to the appointment' and 'drop my masters degree into convo' phase of getting it taken seriously.
posted by t0astie at 4:46 PM on September 10, 2023
Suggestions about panic attacks and characterisation of damage to my heart as 'conjecture' are beyond unhelpful. Air hunger is a documented symptom of HPP - muscles need phosphate to contract. Including your diaphragm and heart. Damage to physiology in persistent HPP is not wild guesswork, it's a documented research finding. Sadly I think I am at the 'bring my husband to the appointment' and 'drop my masters degree into convo' phase of getting it taken seriously.
posted by t0astie at 4:46 PM on September 10, 2023
Best answer: There are two issues. I have nothing to offer regarding your physicians providing the right answers for you, but I do have a suggestion I haven't seen above (though it's akin to Rock 'em Sock 'em's second point) for making it more likely your case will be given due serious consideration.
On top of the other good advice you've received, I encourage you to bring a male-presenting person with you, and if possible, have them wear a suit or at least "grownup" clothes. Explain they will be taking notes for you so that you can focus on the conversation. Say little about who this person is beyond, if you like, their name. Let the doctor wonder whether it's a relative, a lawyer, or what.
Physicians pay more attention when there's someone observing them. Male physicians take more care when a male-presenting person is observing them. They are also likely to be more attentive to your concerns if that male-presenting person is someone they take seriously, and for good or ill, a suit or grownup attire will convey that. Yes, it's icky from a gender perspective and from a class perspective, but I'm willing to recommend suffering ickiness to prevent suffering illness.
posted by The Wrong Kind of Cheese at 5:35 PM on September 10, 2023 [3 favorites]
On top of the other good advice you've received, I encourage you to bring a male-presenting person with you, and if possible, have them wear a suit or at least "grownup" clothes. Explain they will be taking notes for you so that you can focus on the conversation. Say little about who this person is beyond, if you like, their name. Let the doctor wonder whether it's a relative, a lawyer, or what.
Physicians pay more attention when there's someone observing them. Male physicians take more care when a male-presenting person is observing them. They are also likely to be more attentive to your concerns if that male-presenting person is someone they take seriously, and for good or ill, a suit or grownup attire will convey that. Yes, it's icky from a gender perspective and from a class perspective, but I'm willing to recommend suffering ickiness to prevent suffering illness.
posted by The Wrong Kind of Cheese at 5:35 PM on September 10, 2023 [3 favorites]
Suggestions about panic attacks and characterisation of damage to my heart as 'conjecture' are beyond unhelpful. Air hunger is a documented symptom of HPP - muscles need phosphate to contract. Including your diaphragm and heart. Damage to physiology in persistent HPP is not wild guesswork, it's a documented research finding.
I'm a pulmonologist (not your pulmonologist, etc) and one of the largest parts of my practice is providing a second opinion for patients with symptoms that they THOUGHT were cardiac—symptoms like shortness of breath, air hunger, chest pain—but who have had completely negative cardiac evaluations and then land in my office.
We as humans are actually not very good at telling which organ a bodily sensation is coming from, be it heart, lungs, esophagus, brain, muscle, bone, blood, etc (all of which can give rise to what you've described). I have diagnosed many surprising pulmonary problems in these patients as well as referred many of them to specialists they never thought would be appropriate to manage their condition. Although cardiac dysfunction may be a potential side effect of a condition you have, it does not mean that the sensations you are having are cardiac in nature, or that if they are cardiac in nature that they are related to your known problem (many patients have more than one problem!).
I encourage you to be open to receiving the assessment of your cardiologist, even if it is one that does not implicate the diagnosis you already have, or one that concludes you do not have cardiac dysfunction. If your cardiac evaluation is negative, for the symptoms you've described, a referral to a pulmonologist may be appropriate (particularly for the example you just provided of diaphragmatic weakness, which is never managed by cardiology, but by pulmonologists and/or neurologists).
posted by telegraph at 7:16 PM on September 10, 2023 [16 favorites]
I'm a pulmonologist (not your pulmonologist, etc) and one of the largest parts of my practice is providing a second opinion for patients with symptoms that they THOUGHT were cardiac—symptoms like shortness of breath, air hunger, chest pain—but who have had completely negative cardiac evaluations and then land in my office.
We as humans are actually not very good at telling which organ a bodily sensation is coming from, be it heart, lungs, esophagus, brain, muscle, bone, blood, etc (all of which can give rise to what you've described). I have diagnosed many surprising pulmonary problems in these patients as well as referred many of them to specialists they never thought would be appropriate to manage their condition. Although cardiac dysfunction may be a potential side effect of a condition you have, it does not mean that the sensations you are having are cardiac in nature, or that if they are cardiac in nature that they are related to your known problem (many patients have more than one problem!).
I encourage you to be open to receiving the assessment of your cardiologist, even if it is one that does not implicate the diagnosis you already have, or one that concludes you do not have cardiac dysfunction. If your cardiac evaluation is negative, for the symptoms you've described, a referral to a pulmonologist may be appropriate (particularly for the example you just provided of diaphragmatic weakness, which is never managed by cardiology, but by pulmonologists and/or neurologists).
posted by telegraph at 7:16 PM on September 10, 2023 [16 favorites]
symptoms are cardiac - and need cardiac management. The endocrinologist has no more tricks in the toolbox, the cardiologist needs to investigate and manage the symptoms and then correspond with the endo about it.
I think this is where you are mistaken. What you have described is a very thorough workup of your heart. If it is normal, it is reasonable for your cardiologist to conclude that your symptoms are not in fact cardiac in nature.
posted by i_am_a_fiesta at 7:21 PM on September 10, 2023 [1 favorite]
I think this is where you are mistaken. What you have described is a very thorough workup of your heart. If it is normal, it is reasonable for your cardiologist to conclude that your symptoms are not in fact cardiac in nature.
posted by i_am_a_fiesta at 7:21 PM on September 10, 2023 [1 favorite]
characterisation of damage to my heart as 'conjecture' are beyond unhelpful.
I'm sorry that my statement was unhelpful. I would like to clarify that I was stating that your cardiologist is unlikely to evaluate the evidence the way you are evaluating the evidence. That could be for valid reasons based on their medical knowledge, or for fucked up reasons such as because they are a sexist jerk. So FWIW my intent was not to evaluate your perspective or knowledge, but to suggest a strategic direction based on the likely reception.
posted by latkes at 7:45 PM on September 10, 2023 [1 favorite]
I'm sorry that my statement was unhelpful. I would like to clarify that I was stating that your cardiologist is unlikely to evaluate the evidence the way you are evaluating the evidence. That could be for valid reasons based on their medical knowledge, or for fucked up reasons such as because they are a sexist jerk. So FWIW my intent was not to evaluate your perspective or knowledge, but to suggest a strategic direction based on the likely reception.
posted by latkes at 7:45 PM on September 10, 2023 [1 favorite]
Best answer: I once brought a peer-reviewed journal article to say "can we try this thing here in this paragraph I highlighted?" and they said "hmmm..." and went back to confer with a colleague and found out that one person in the office did have that skill and tried it. I don't think I would've gotten that far if I just described it as something I'd read about. We also discussed something from another paragraph in the article. So if you have found something that seems on-point in your reading, it might help to bring it.
Also, I found that medical office to be a helpful place to begin with -- rather than just being at a regular doctor's office, it was outpatient care at a teaching hospital, so I was being treated by interns or residents who had an attending physician on standby. The interns / residents were all about the latest research and seemed positive about the act of listening and explaining things to me -- it felt a little bit less like everything was well-worn habit to them. And then after the intern / resident met with me, they would leave and come back with the attending and we'd go through the whole thing again, so there was a lot of chance for dialogue. I got to ask my questions to two people.
Good luck; I'm sorry you're in this situation and hope you feel better soon.
posted by slidell at 2:08 AM on September 11, 2023
Also, I found that medical office to be a helpful place to begin with -- rather than just being at a regular doctor's office, it was outpatient care at a teaching hospital, so I was being treated by interns or residents who had an attending physician on standby. The interns / residents were all about the latest research and seemed positive about the act of listening and explaining things to me -- it felt a little bit less like everything was well-worn habit to them. And then after the intern / resident met with me, they would leave and come back with the attending and we'd go through the whole thing again, so there was a lot of chance for dialogue. I got to ask my questions to two people.
Good luck; I'm sorry you're in this situation and hope you feel better soon.
posted by slidell at 2:08 AM on September 11, 2023
Response by poster: Thanks everyone who provided actual answers to my question and suggestions for how to get the cardiologist to take me seriously and progress further investigations into potential damage to my heart, and management of my symptoms. I did take my husband with me, we both dressed in our nicest corporate wear, and rehearsed my husband saying 'I'm VERY worried about her.' (He is, as it happens, very worried.)
We'll never know whether the cardiologist would have taken my symptoms as seriously without this play acting, but this was the first of five appointments where I haven't been hustled out the door in five minutes flat. She agreed that yes, HPP does lead to endothelial damage and cardiomyopathy amongst other ongoing cardiac problems and that these are real possibilities and that I am right to be worried. She also agreed that serum phosphate levels can be misleading in HPP and may not be a reflection of how phosphate is metabolised - and that remaining highly symptomatic with, yes, cardiac symptoms, despite medication is of grave concern.
I was sent to hospital immediately to check I don't have a pulmonary embolism and may be admitted as an inpatient for further tests and monitoring tomorrow. She is also going to refer me to a general physician with an interest in endocrinology who may be able to offer additional insight, and she'll base symptom management on the outcomes of tests over the next few days.
This is exactly the outcome I hoped for, thanks MeFites. (Well... tbh, the outcome I really hope for is getting over the HPP, but I'll take this for now!)
posted by t0astie at 4:44 AM on September 11, 2023 [18 favorites]
We'll never know whether the cardiologist would have taken my symptoms as seriously without this play acting, but this was the first of five appointments where I haven't been hustled out the door in five minutes flat. She agreed that yes, HPP does lead to endothelial damage and cardiomyopathy amongst other ongoing cardiac problems and that these are real possibilities and that I am right to be worried. She also agreed that serum phosphate levels can be misleading in HPP and may not be a reflection of how phosphate is metabolised - and that remaining highly symptomatic with, yes, cardiac symptoms, despite medication is of grave concern.
I was sent to hospital immediately to check I don't have a pulmonary embolism and may be admitted as an inpatient for further tests and monitoring tomorrow. She is also going to refer me to a general physician with an interest in endocrinology who may be able to offer additional insight, and she'll base symptom management on the outcomes of tests over the next few days.
This is exactly the outcome I hoped for, thanks MeFites. (Well... tbh, the outcome I really hope for is getting over the HPP, but I'll take this for now!)
posted by t0astie at 4:44 AM on September 11, 2023 [18 favorites]
Best answer: Wow, nice job. Sorry you had to go through that to get them to focus on your situation, but I'm glad to hear it got you some traction. Fingers crossed that the tests help you figure out a path toward getting over it.
posted by slidell at 5:23 PM on September 16, 2023 [1 favorite]
posted by slidell at 5:23 PM on September 16, 2023 [1 favorite]
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I have had this level of frustration with doctors many times, what you’re experiencing is scary and I feel you.
She’s not going to be interested in your views, but may be in the endo’s. So I would say “the endocrinologist treating me suggested that phosphate may be contributing to my symptoms - what is your perspective on that?” Doctors are allergic to being told anything especially by patients, but they may consider ideas from other HCP (though sometimes not that either). (And of course asking for her opinion is going to be better received than telling her off.)
Best of luck.
posted by cotton dress sock at 8:49 AM on September 10, 2023 [4 favorites]