How to get accurate information and ways to get answers from docs?

Posted by stuckonu @stuckonu, Dec 29, 2019

Do doctors or specialist ever comment in/on connect?

If not I’m curious about getting specific/accurate information about a blood test and results that vary what seems like a significant amount in one month period of time.

I discovered here about Hyperparathyroidism which I had never heard of until someone here suggested that I read the article here on Mayo.

That said, it is almost a joke trying to get tested and to get straight answers about the condition as well as the tests. If I could record all that has occurred since I read the article and tried to be tested.

If nothing else I read in the article here that some or all of the blood work should be done fasting. None of my tests have been done fasting and the push back that I get just mentioning it is crazy. I thought that perhaps the reason why my blood work is all over the place is because each time it’s been taken has been late in the day. None of the doctors were interested in previous tests. The tests have been done 3 time in one month. PTH is always high but that test alone had one doc call it moderate and another calling it significant.
One doc said we want to know why it’s high, the endocrinologist did an ultrasound and reported to me that where there once was two nodules no there appears to be more but that an ultrasound can not determine if any of them are the gland or just benign masses. That said the hormone is high.
Even my Vit D has varied a lot in one month; going down while taking 50,000 a week.
Lastly no one who is listed including Mayo will talk over the phone unless I’m referred.
Does anyone know definitively if the test needs to be done fasting and is it possible to have radical swings in the chemistry they are looking at to determine a plan going forward.

@stuckonu I don't believe there are any medical doctors who answer questions on here. One of the sites I have used in the past is https://labtestsonline.org/
If you look there, you might find answers to your questions. Do you know ahead of time when your tests might be pulled, so you can fast if needed? I have found that a dr might say fasting is not needed. And I usually will ask the phlebotomist if fasting is required for a particular test, or not.
Ginger

REPLY
@gingerw

@stuckonu I don't believe there are any medical doctors who answer questions on here. One of the sites I have used in the past is https://labtestsonline.org/
If you look there, you might find answers to your questions. Do you know ahead of time when your tests might be pulled, so you can fast if needed? I have found that a dr might say fasting is not needed. And I usually will ask the phlebotomist if fasting is required for a particular test, or not.
Ginger

Jump to this post

TY Ginger for answering, I’ve really been struggling with anger directed at the doctors to the point of saying exactly what’s on my mind which they are not used to nor thrilled about to hear. Maybe this ironically shows that they are like most people who do not like feedback that is critical in someway about things that they do. ( I’m writing a performance art piece with this perception/opinion as the subject )
As far as your question goes the answer is probably not for a couple of reasons. 1 most of my appointments are often late so fasting til 2 pm for instance takes more will power than I can muster especially since many days I’m running on 1 hour of sleep per night. < on one hour sleep and I have boundless energy until I hit the wall and then I immediately look for a place to crash; not good when driving >
I do not know if this is part of the parathyroid hormone number ( high in all three blood tests over a one month period of time ) because none of the doctors know for sure and although they don’t say :” I don’t know the answer to that question ) it’s one of those “ streetwise “ things that suggests that he’s just covering his butt so he doesn’t wind up with egg on his face. { not sure if anyone picked up on the mixed metaphors which suggests that their butt and face are one and the same thing] ( sorry if that offends anyone ) maybe you can guess what I say to their face ( butt ). They see you but don’t admit that they don’t know anything about what you’re going through. ( someone here must have recognized in these epic posts that maybe it was Hyperparathyroidism I haven’t figured out who exactly that was but I would like to talk with someone who knows for sure. Calls to Mayo and specially the Endocrinology dept to ask about the fasting before the blood test results in the same response : “ we do not discuss medical questions and get a referral to be seen by us” this is why I asked if any doctors or medical specialists participate here. I will check out the link you gave to me in your reply.
Something I noticed over the last year or so which is about the time that based on what I read in the Mayo publication that this hyperparathyroid thing started effecting major changes in my daily life; I noticed one doctor who was seeing me on a follow up reaching for the door handle after reading what the nurse wrote on the notes he read before coming in the room. I told the nurse that the pain level for the reason I was seeing this “ specialist “ for a strange pain I was getting in my hip was ZERO I thought about lying figuring that the truth might suggest that his RX for two drugs ( Meloxican and Percocet ) did the trick so I was fixed. He was not thrilled that I had more questions and literally had his hand on the door the whole time he was in the room with me. Since then I actually found out that many doctors are given a specific period of time for their appointment. In the case of the ENT doctor his appointments are 10 or 20 minutes. Do you think the patients are informed that they have 10 minutes and the doctor will “ wrap up “ as quickly as possible. Turned out that the same day I saw doctor “ hand on the door nob “ the pain returned as an 8. His office stated that I needed to start over because my case was closed so they would not write anymore scripts. Health care has become a racket. How can anyone involved in this profession defend their methods, rules, and practices?
I’m sorry that I go on like this in my stream of consciousness style of writing but that’s my style of ART that I do. I think I mentioned somewhere that ART IS my avocation and was fortunate enough to be in places that appreciated the avant-garde so I “made a living “ That said I’m aware that most HB’s consider my writing and other ART projects like a run~on~sentence. All is good however knowing that everyone likes what they like so that’s that so to speak. For those here who respond I want to thank you for foraging through my dumpster. < VBG >

REPLY

I find your insight refreshing as I have the same attitude toward doctors. It is the main problem of the U.S. healthcare system. I have referred to doctors as the 15 minute wonders. They give you 15 minutes and leave you wondering why the hell you went to see them. The reality is you could probably find out more about your medical problems by going to the internet. At the very least, you are going to spend more than 15 minutes on yourself. I have my own experiences dealing with a lot of doctors over the last 34 years. Educated dumb asses. I saw at least 20 doctors and nearly died from a pain medication that I was prescribed for nerve damage that was caused by a surgeon, before I decided to look into this problem myself. It took me 30 minutes to find an answer. It was that pain killer I was reacting to. I am not a doctor but it seems neither were these people I was seeing for medical help. It seems too many people rely on this healthcare system and to me it is just too broken.

Liked by stuckonu

REPLY
@stuckonu

TY Ginger for answering, I’ve really been struggling with anger directed at the doctors to the point of saying exactly what’s on my mind which they are not used to nor thrilled about to hear. Maybe this ironically shows that they are like most people who do not like feedback that is critical in someway about things that they do. ( I’m writing a performance art piece with this perception/opinion as the subject )
As far as your question goes the answer is probably not for a couple of reasons. 1 most of my appointments are often late so fasting til 2 pm for instance takes more will power than I can muster especially since many days I’m running on 1 hour of sleep per night. < on one hour sleep and I have boundless energy until I hit the wall and then I immediately look for a place to crash; not good when driving >
I do not know if this is part of the parathyroid hormone number ( high in all three blood tests over a one month period of time ) because none of the doctors know for sure and although they don’t say :” I don’t know the answer to that question ) it’s one of those “ streetwise “ things that suggests that he’s just covering his butt so he doesn’t wind up with egg on his face. { not sure if anyone picked up on the mixed metaphors which suggests that their butt and face are one and the same thing] ( sorry if that offends anyone ) maybe you can guess what I say to their face ( butt ). They see you but don’t admit that they don’t know anything about what you’re going through. ( someone here must have recognized in these epic posts that maybe it was Hyperparathyroidism I haven’t figured out who exactly that was but I would like to talk with someone who knows for sure. Calls to Mayo and specially the Endocrinology dept to ask about the fasting before the blood test results in the same response : “ we do not discuss medical questions and get a referral to be seen by us” this is why I asked if any doctors or medical specialists participate here. I will check out the link you gave to me in your reply.
Something I noticed over the last year or so which is about the time that based on what I read in the Mayo publication that this hyperparathyroid thing started effecting major changes in my daily life; I noticed one doctor who was seeing me on a follow up reaching for the door handle after reading what the nurse wrote on the notes he read before coming in the room. I told the nurse that the pain level for the reason I was seeing this “ specialist “ for a strange pain I was getting in my hip was ZERO I thought about lying figuring that the truth might suggest that his RX for two drugs ( Meloxican and Percocet ) did the trick so I was fixed. He was not thrilled that I had more questions and literally had his hand on the door the whole time he was in the room with me. Since then I actually found out that many doctors are given a specific period of time for their appointment. In the case of the ENT doctor his appointments are 10 or 20 minutes. Do you think the patients are informed that they have 10 minutes and the doctor will “ wrap up “ as quickly as possible. Turned out that the same day I saw doctor “ hand on the door nob “ the pain returned as an 8. His office stated that I needed to start over because my case was closed so they would not write anymore scripts. Health care has become a racket. How can anyone involved in this profession defend their methods, rules, and practices?
I’m sorry that I go on like this in my stream of consciousness style of writing but that’s my style of ART that I do. I think I mentioned somewhere that ART IS my avocation and was fortunate enough to be in places that appreciated the avant-garde so I “made a living “ That said I’m aware that most HB’s consider my writing and other ART projects like a run~on~sentence. All is good however knowing that everyone likes what they like so that’s that so to speak. For those here who respond I want to thank you for foraging through my dumpster. < VBG >

Jump to this post

@stuckonu I had a very good nephrologist leave a group practice because he was allotted only 15 minutes per patient, including data input. His thought [and I agreed] was that was not enough time. He was educated in a way that left no room for hurry-up-and-get to-the-next one. There are practices these days who use a scribe to do computer entry alongside the dr, enabling the dr to do their job. My current kidney dr uses an in-person scribe, while my cancer dr uses a voice activated software that records everything, then it is transcribed. Regardless, I use the internet to assist me in getting information, as needed. I don't expect my team to have all the answers, as my case is different than the next person, and I am the only one who has gone through my exact situation.
Ginger

REPLY
@stuckonu

TY Ginger for answering, I’ve really been struggling with anger directed at the doctors to the point of saying exactly what’s on my mind which they are not used to nor thrilled about to hear. Maybe this ironically shows that they are like most people who do not like feedback that is critical in someway about things that they do. ( I’m writing a performance art piece with this perception/opinion as the subject )
As far as your question goes the answer is probably not for a couple of reasons. 1 most of my appointments are often late so fasting til 2 pm for instance takes more will power than I can muster especially since many days I’m running on 1 hour of sleep per night. < on one hour sleep and I have boundless energy until I hit the wall and then I immediately look for a place to crash; not good when driving >
I do not know if this is part of the parathyroid hormone number ( high in all three blood tests over a one month period of time ) because none of the doctors know for sure and although they don’t say :” I don’t know the answer to that question ) it’s one of those “ streetwise “ things that suggests that he’s just covering his butt so he doesn’t wind up with egg on his face. { not sure if anyone picked up on the mixed metaphors which suggests that their butt and face are one and the same thing] ( sorry if that offends anyone ) maybe you can guess what I say to their face ( butt ). They see you but don’t admit that they don’t know anything about what you’re going through. ( someone here must have recognized in these epic posts that maybe it was Hyperparathyroidism I haven’t figured out who exactly that was but I would like to talk with someone who knows for sure. Calls to Mayo and specially the Endocrinology dept to ask about the fasting before the blood test results in the same response : “ we do not discuss medical questions and get a referral to be seen by us” this is why I asked if any doctors or medical specialists participate here. I will check out the link you gave to me in your reply.
Something I noticed over the last year or so which is about the time that based on what I read in the Mayo publication that this hyperparathyroid thing started effecting major changes in my daily life; I noticed one doctor who was seeing me on a follow up reaching for the door handle after reading what the nurse wrote on the notes he read before coming in the room. I told the nurse that the pain level for the reason I was seeing this “ specialist “ for a strange pain I was getting in my hip was ZERO I thought about lying figuring that the truth might suggest that his RX for two drugs ( Meloxican and Percocet ) did the trick so I was fixed. He was not thrilled that I had more questions and literally had his hand on the door the whole time he was in the room with me. Since then I actually found out that many doctors are given a specific period of time for their appointment. In the case of the ENT doctor his appointments are 10 or 20 minutes. Do you think the patients are informed that they have 10 minutes and the doctor will “ wrap up “ as quickly as possible. Turned out that the same day I saw doctor “ hand on the door nob “ the pain returned as an 8. His office stated that I needed to start over because my case was closed so they would not write anymore scripts. Health care has become a racket. How can anyone involved in this profession defend their methods, rules, and practices?
I’m sorry that I go on like this in my stream of consciousness style of writing but that’s my style of ART that I do. I think I mentioned somewhere that ART IS my avocation and was fortunate enough to be in places that appreciated the avant-garde so I “made a living “ That said I’m aware that most HB’s consider my writing and other ART projects like a run~on~sentence. All is good however knowing that everyone likes what they like so that’s that so to speak. For those here who respond I want to thank you for foraging through my dumpster. < VBG >

Jump to this post

@stuckonu @goldleaf @gingerw You are getting to my biggest peeve about our healthcare system these days. Doctors no longer have private practices, they are hospital employees and have to abide by the hospital's requirements, making office visits very impersonal often, and then, if you get sick enough to be hospitalized, they are hands-off. When you would most want to have your own doctor there, the doctor with whom you have hopefully developed a rapport, you are treated by a bunch of strangers – hospitalists. I really hate the current system. So far, I have not had many doctors really rush through appointments as much as you are indicating, but there have been times when I would have liked a tad more time.
@goldleaf your experience is very unfortunate but I think most doctors are pretty intelligent. Granted, they sometimes do not diagnose as well as we would like which is why I now favor going to a major medical center. I find them to be much better about that. One doctor whom I recently saw for the first time about my osteoporosis has been extremely responsive to messages on the portal. She has been helpful and informative. My husband feels female doctors are better with the details. He may be right.
JK

REPLY
@goldleaf

I find your insight refreshing as I have the same attitude toward doctors. It is the main problem of the U.S. healthcare system. I have referred to doctors as the 15 minute wonders. They give you 15 minutes and leave you wondering why the hell you went to see them. The reality is you could probably find out more about your medical problems by going to the internet. At the very least, you are going to spend more than 15 minutes on yourself. I have my own experiences dealing with a lot of doctors over the last 34 years. Educated dumb asses. I saw at least 20 doctors and nearly died from a pain medication that I was prescribed for nerve damage that was caused by a surgeon, before I decided to look into this problem myself. It took me 30 minutes to find an answer. It was that pain killer I was reacting to. I am not a doctor but it seems neither were these people I was seeing for medical help. It seems too many people rely on this healthcare system and to me it is just too broken.

Jump to this post

I have a few thoughts but number one is how your words:” I’m not a doctor “ are words that I found myself say a lot of late; so much so that now I’ve added : “ I know I say this a lot: ‘ I’m not a doctor but….’ “ I call that “ Noticing what I notice “
Honestly I love that saying but in the vein of Noticing what you NOTICE “ results in the people I say that to taking offense at it which makes me wonder what they are noticing by hearing me say that to them. And for the record I’ve said those words to several doctors over the last few years and immediately they show an attitude. Why not ask me “ what do you mean by that?” But that opens up space for a dialogue which is not what they want. In fact I also noticed that many doctors now answer questions like politicians do which is to say they don’t answer your question.
Maybe the one exception to this observation is when it comes to delivering bad news which ironically they seem to do easily devoid of any emotion. Just my humble opinion and observation.

REPLY
@gingerw

@stuckonu I had a very good nephrologist leave a group practice because he was allotted only 15 minutes per patient, including data input. His thought [and I agreed] was that was not enough time. He was educated in a way that left no room for hurry-up-and-get to-the-next one. There are practices these days who use a scribe to do computer entry alongside the dr, enabling the dr to do their job. My current kidney dr uses an in-person scribe, while my cancer dr uses a voice activated software that records everything, then it is transcribed. Regardless, I use the internet to assist me in getting information, as needed. I don't expect my team to have all the answers, as my case is different than the next person, and I am the only one who has gone through my exact situation.
Ginger

Jump to this post

Thanks Ginger for sharing your thoughts and experiences.
I often feel that my long posts turn people off here and elsewhere.
Moreover, if one thinks about it isn’t it a little like 10 or 15 minute doctor appointments; like shorthand examinations. Think of your favorite book available in shorthand Gone With The Wind might have a secondary, metaphorical meaning.
I would like to present my theory on the The Rise of Attention Deficit Disorder. It seemed obvious to me that there is a cause and reason for the number of kids that compared to other generations seems to be epidemic.

REPLY
@contentandwell

@stuckonu @goldleaf @gingerw You are getting to my biggest peeve about our healthcare system these days. Doctors no longer have private practices, they are hospital employees and have to abide by the hospital's requirements, making office visits very impersonal often, and then, if you get sick enough to be hospitalized, they are hands-off. When you would most want to have your own doctor there, the doctor with whom you have hopefully developed a rapport, you are treated by a bunch of strangers – hospitalists. I really hate the current system. So far, I have not had many doctors really rush through appointments as much as you are indicating, but there have been times when I would have liked a tad more time.
@goldleaf your experience is very unfortunate but I think most doctors are pretty intelligent. Granted, they sometimes do not diagnose as well as we would like which is why I now favor going to a major medical center. I find them to be much better about that. One doctor whom I recently saw for the first time about my osteoporosis has been extremely responsive to messages on the portal. She has been helpful and informative. My husband feels female doctors are better with the details. He may be right.
JK

Jump to this post

JK, thanks for sharing you own thoughts and experience as well as this observation: “When you would most want to have your own doctor there, the doctor with whom you have hopefully developed a rapport, you are treated by a bunch of strangers – hospitalists “ this is an example of Notice what You Notice “ So if we have an actual book dictionary from some period which might includes all of the last century, and you look up “ hospitalist “ you will not find it in the dictionary. In fact, the spell checker here wants to correct that word and insert hospitality
It’s like “ let’s make up a word that sounds good and important “
It makes sense to me that certain discoveries need to be named but sometimes it seems that there are risks and consequences for naming things. Of course this topic IMHO can be presented as a masters thesis or doctorate dissertation and probably should be to draw attention to language.
I recently said to my therapist that HB’s ( Human Beings ) “ language our realities “. She pulled out a note book that she had tucked between her leg and the arm of the chair and wrote something down. She asked me if I had noticed that she does this a lot. Yes, I had noticed. She explained to me that she only has one other patient who says things that cause her to think. I thought that it was interesting to me that she admits to only two HB’s who say things worthy of writing down. I liked that she shared that with me. More often than not I have people say: “ I have no idea about what you just said “ I do not get upset when I hear that because I’ve heard it most of my life.
I wrote something here awhile ago about get bad grades and lots of red F’s and D’s on papers and report cards until I went to a “ progressive college “ that didn’t grade on spelling, grammar, and other traditional writing conditions. The we’re looking for substance / creativity my self esteem changed as did my grades. In a way I think this relates to medicine in this way: “ if they only listened to what’s being said…”

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@stuckonu

I have a few thoughts but number one is how your words:” I’m not a doctor “ are words that I found myself say a lot of late; so much so that now I’ve added : “ I know I say this a lot: ‘ I’m not a doctor but….’ “ I call that “ Noticing what I notice “
Honestly I love that saying but in the vein of Noticing what you NOTICE “ results in the people I say that to taking offense at it which makes me wonder what they are noticing by hearing me say that to them. And for the record I’ve said those words to several doctors over the last few years and immediately they show an attitude. Why not ask me “ what do you mean by that?” But that opens up space for a dialogue which is not what they want. In fact I also noticed that many doctors now answer questions like politicians do which is to say they don’t answer your question.
Maybe the one exception to this observation is when it comes to delivering bad news which ironically they seem to do easily devoid of any emotion. Just my humble opinion and observation.

Jump to this post

Hi, I use that phrase for a couple of reasons. One of those reasons is I don’t feel comfortable giving medical advice to anyone. How I deal with my medical problems is personal. I have a few incurable ones it seems. I found a very knowledgeable neurologist that told me that it is a good idea to be your own doctor. In his estimation, I have been very accurate in my explanations an diagnosis of those medical problems. I have a couple of other doctors and health professionals who feel the same way. I find that interesting and amusing. About 15 years ago, I found out that I have dyslexia. I was never going to be a doctor. I can read pretty well now, but it took a long time and I still problem areas. Observation and life experiences along with the mentoring of some very knowledgeable people in my life, were my educators. As far as the doctors I have met along the way, well I guess I just hit the mother load of bad ones. I will tell you about a couple of these doctors and how they run their practice. They separate there time when it comes to who pays them more for there services. If you have Medicare or a Medicare Advantage plan, you would be lucky if you ever saw that doctor. All I saw was a helper or a nurse. A really big problem as it turned out as it took a very long time before I found out that one of my medical problems is rare. I found that medical problem on my own since I was never going to get any help.

REPLY

@stuckonu, I modified the title of this discussion to "How to get accurate information and ways to get answers from docs?". This better reflects the discussion that is unfolding. Many of you bring up good points about the ever-shortening length of medical consults, plethora of information online from both authoritative and non-authoritative sources, the shift to electronic transmission of lab results with little explanation about them, developing opportunities to communicate with professionals in new and novel ways online, via patient portals, etc.

This conversation can be very useful as we learn to navigate the new territory and share tips on how to make it work for the patient.

I, for one, love that my PCP uses an electronic patient portal. Communicating online is easy for me. We discuss lab results via secure text/email messages and I am quickly put at ease when there are no concerns or directed to next steps if further testing is required. When I need more context or emotional support to accompany the results, I make an appointment to see her. She is always on time. I think I have the best doc. This scenario is repeated at the hospital where I am followed by gyne-oncology specialist. She's on time, takes time to answer my questions and communication via the patient portal augments the in-person communication. I have an upcoming appointment with another specialist that I believe will not be the same. Right on the appointment information sheet it says to expect delays of 2 to 3 hours. Luckily I was able to schedule my appointment for early morning, so hopefully she won't be too far behind.

I'd be interested in hearing from others how they are adapting and getting good care.

REPLY
@colleenyoung

@stuckonu, I modified the title of this discussion to "How to get accurate information and ways to get answers from docs?". This better reflects the discussion that is unfolding. Many of you bring up good points about the ever-shortening length of medical consults, plethora of information online from both authoritative and non-authoritative sources, the shift to electronic transmission of lab results with little explanation about them, developing opportunities to communicate with professionals in new and novel ways online, via patient portals, etc.

This conversation can be very useful as we learn to navigate the new territory and share tips on how to make it work for the patient.

I, for one, love that my PCP uses an electronic patient portal. Communicating online is easy for me. We discuss lab results via secure text/email messages and I am quickly put at ease when there are no concerns or directed to next steps if further testing is required. When I need more context or emotional support to accompany the results, I make an appointment to see her. She is always on time. I think I have the best doc. This scenario is repeated at the hospital where I am followed by gyne-oncology specialist. She's on time, takes time to answer my questions and communication via the patient portal augments the in-person communication. I have an upcoming appointment with another specialist that I believe will not be the same. Right on the appointment information sheet it says to expect delays of 2 to 3 hours. Luckily I was able to schedule my appointment for early morning, so hopefully she won't be too far behind.

I'd be interested in hearing from others how they are adapting and getting good care.

Jump to this post

@colleenyoung I too like the portals. Using that assures me that the doctor gets exactly what I am saying, not a nurse’s interpretation of what I said on the phone.
My PCP generally seems to schedule me for a long appointment so I almost always have enough time with him. I’m probably his patient with the most problems.
I think before choosing a doctor we need to do as much research as possible and hopefully get input from people who use that doctor. I have also asked other doctors at the same medical center about doctors. Sure, they will never say anything bad about a colleague but you can often discern their real feelings by how they express themselves.
Sometimes I like to schedule at the end of the day or just before their lunch break because then they are not rushing off as much.
JK

REPLY
@colleenyoung

@stuckonu, I modified the title of this discussion to "How to get accurate information and ways to get answers from docs?". This better reflects the discussion that is unfolding. Many of you bring up good points about the ever-shortening length of medical consults, plethora of information online from both authoritative and non-authoritative sources, the shift to electronic transmission of lab results with little explanation about them, developing opportunities to communicate with professionals in new and novel ways online, via patient portals, etc.

This conversation can be very useful as we learn to navigate the new territory and share tips on how to make it work for the patient.

I, for one, love that my PCP uses an electronic patient portal. Communicating online is easy for me. We discuss lab results via secure text/email messages and I am quickly put at ease when there are no concerns or directed to next steps if further testing is required. When I need more context or emotional support to accompany the results, I make an appointment to see her. She is always on time. I think I have the best doc. This scenario is repeated at the hospital where I am followed by gyne-oncology specialist. She's on time, takes time to answer my questions and communication via the patient portal augments the in-person communication. I have an upcoming appointment with another specialist that I believe will not be the same. Right on the appointment information sheet it says to expect delays of 2 to 3 hours. Luckily I was able to schedule my appointment for early morning, so hopefully she won't be too far behind.

I'd be interested in hearing from others how they are adapting and getting good care.

Jump to this post

I'm with you on the use of patient portals with my healthcare, @colleenyoung It used to be 'if you don't hear from us everything is OK'! Now I can look and prepare any questions I might have.

The issue that currently bothers me the most is the move to 20 minute appointments, while doctors feel free to keep patients waiting for hours, as you point out. I have never had a doctor tell me I could spend more time with them since they kept me waiting for a long period of time. Tells me immense amounts about how most doctors value their patients' time. While I was my wife's caregiver and the GP (we both had the same one) knew time and ability to focus were extraordinarily challenging for us, nothing changed! Even if I booked a 20 for my wife and a 20 immediately after for me, the office would not allow me to use all 40 for my wife. Crazy to me! In my wife's condition it took the vast majority of the 20 minutes just to delineate her current status and needs. If it hadn't been for her neuro-oncologist her care would have been subpar for sure.

How did I focus on getting good care? For my wife it was very hard since change was a huge hurdle for her, but the moment she entered home hospice care I began begging the hospice medical director to take on her care, which she ultimately did. For me, two days after my wife passed away I quit that GP and even though I have to travel farther I changed to a doctor who runs his own independent office, which luckily is in my network.

This is a tough issue for many of us!

REPLY
@IndianaScott

I'm with you on the use of patient portals with my healthcare, @colleenyoung It used to be 'if you don't hear from us everything is OK'! Now I can look and prepare any questions I might have.

The issue that currently bothers me the most is the move to 20 minute appointments, while doctors feel free to keep patients waiting for hours, as you point out. I have never had a doctor tell me I could spend more time with them since they kept me waiting for a long period of time. Tells me immense amounts about how most doctors value their patients' time. While I was my wife's caregiver and the GP (we both had the same one) knew time and ability to focus were extraordinarily challenging for us, nothing changed! Even if I booked a 20 for my wife and a 20 immediately after for me, the office would not allow me to use all 40 for my wife. Crazy to me! In my wife's condition it took the vast majority of the 20 minutes just to delineate her current status and needs. If it hadn't been for her neuro-oncologist her care would have been subpar for sure.

How did I focus on getting good care? For my wife it was very hard since change was a huge hurdle for her, but the moment she entered home hospice care I began begging the hospice medical director to take on her care, which she ultimately did. For me, two days after my wife passed away I quit that GP and even though I have to travel farther I changed to a doctor who runs his own independent office, which luckily is in my network.

This is a tough issue for many of us!

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@IndianaScott I never have to wait very long except with an orthopedic doctor I used to use. I never minded with her because I knew if I needed extra time I would have it. It doesn’t sound as if your doctor was like that. I wonder what made that doctor run so late if they were that stingy with their time.
JK

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@stuckonu

Thanks Ginger for sharing your thoughts and experiences.
I often feel that my long posts turn people off here and elsewhere.
Moreover, if one thinks about it isn’t it a little like 10 or 15 minute doctor appointments; like shorthand examinations. Think of your favorite book available in shorthand Gone With The Wind might have a secondary, metaphorical meaning.
I would like to present my theory on the The Rise of Attention Deficit Disorder. It seemed obvious to me that there is a cause and reason for the number of kids that compared to other generations seems to be epidemic.

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@stuckonu I think the rise of ADD is primarily due to it being recognized now. When my son was a toddler he was very active, impulsive, and often inattentive. When I started reading up on this I realized that I had ADHD! When I was a student I was labeled as lazy and as being an “underachiever” because my IQ and other aptitude tests showed intelligence far beyond my performance. I struggled a lot. Large lecture halls in college put me to sleep, literally, so I made sure my son and daughter, who also has ADD went to smaller colleges where classes would be more interactive. I became pretty knowledgeable about both forms of ADD. Neither my son or daughter were medicated. My son’s grades suffered tremendously but he has excelled in life. My daughter’s grades also suffered but not as severely. She is extremely bright and taught herself compensatory methods when studying. She still drifts off, typical of female ADD and that has caused her to lose many things over time.
Both of them are fairly classic.
JK

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@colleenyoung

@stuckonu, I modified the title of this discussion to "How to get accurate information and ways to get answers from docs?". This better reflects the discussion that is unfolding. Many of you bring up good points about the ever-shortening length of medical consults, plethora of information online from both authoritative and non-authoritative sources, the shift to electronic transmission of lab results with little explanation about them, developing opportunities to communicate with professionals in new and novel ways online, via patient portals, etc.

This conversation can be very useful as we learn to navigate the new territory and share tips on how to make it work for the patient.

I, for one, love that my PCP uses an electronic patient portal. Communicating online is easy for me. We discuss lab results via secure text/email messages and I am quickly put at ease when there are no concerns or directed to next steps if further testing is required. When I need more context or emotional support to accompany the results, I make an appointment to see her. She is always on time. I think I have the best doc. This scenario is repeated at the hospital where I am followed by gyne-oncology specialist. She's on time, takes time to answer my questions and communication via the patient portal augments the in-person communication. I have an upcoming appointment with another specialist that I believe will not be the same. Right on the appointment information sheet it says to expect delays of 2 to 3 hours. Luckily I was able to schedule my appointment for early morning, so hopefully she won't be too far behind.

I'd be interested in hearing from others how they are adapting and getting good care.

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I use a patient portal also with one of my doctors. My other two doctors don’t have that. The neurologist I see and has given me my only temporary relief from the surgical site nerve damage I have, let’s me email him. I will explain why for the most part, known of this is any real help for someone with my medical problems. My surgery was to repair a rectal tear. I have a real problem sitting anywhere. The surgery also caused both my feet to have peripheral nerve damage. That showed up as soon as I came home that evening from that surgery. I can’t stand for very long because of the pain. My trips to a doctors office is rare and only when I get my injections for the surgical site. You would think that would be enough to drive anyone up a wall but I had a surprise waiting for me down the road. I was prescribed the Fentynal patch for the excruciating pain I was experiencing. When I finally had a very bad medical problem, a pancreatitis attack, that was caused by the use of that Fentynal, I decided to detox from that. The surprise was that I have Central Sensitization Syndrome. I also found out that I could no longer use any pharmaceutical drugs. Chemical sensitivity. The reality is I talked to a lot of different doctors and I tried to have conversations about all of this. Their dumb comments, their rudeness, their arrogance at me even questioning them was just too much. Yes I know there are some doctors who try to buck this system, but it is called medical suicide. They won’t get any of the perks if they don’t go along with the program. The neurologist I see, does not prescribed any opiates. He turns away any pharmaceutical rep that shows up at his office with this idea because he knows how damaging that crap is. Other doctors go along with it. He doesn’t get a lot of patients because of it. This situation you might find interesting, I did an have experienced it first hand. If I need to go any doctors office for any reason, and since I can’t really stand for very long or sit, know of these place can accommodate me in having a place I can lay down so I can wait for the doctor. I can’t last that long and just have to leave and go home. Weird since they are suppose to do this.

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