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Thyroid awareness: Campaigning to push proper testing and treatment
There needs to be change in a lot of health care, unfortunately we in the US might be going even more backwards as big pharma, insurance, and improper medical training takes control of our health.
But this is about THYROID. So many have had limited tests, improper med treatment, even refusal to test a full thyroid panel which results in miss diagnoses or diagnosis years later (ten years later for me and there are worse cases here). They forget heath care is a service industry, we pay for service, but don't always get what we pay for. We read about this every other post here, its why MH thyroid pages and other thyroid sites exist.
Behind the scenes I know there has been talk about what to do about this. We do have thyroid awareness 'month' (good start), but we need more than that. The books are there, thats a good dent but.........most doctors could care less. What I think: We need a main global or continental group 'voice', patient organization ect to push medical in the right direction.
This is important. So what to about it do starts by seeing to what 'thyroidians' here have to say, everyone.. 'vet' members to newbies.........whatever it is think about it, let the brainstorming begin.........
In addition to the poll, say what you have to say. I will bump this up on occasion, as this effects everyone here.
LM
But this is about THYROID. So many have had limited tests, improper med treatment, even refusal to test a full thyroid panel which results in miss diagnoses or diagnosis years later (ten years later for me and there are worse cases here). They forget heath care is a service industry, we pay for service, but don't always get what we pay for. We read about this every other post here, its why MH thyroid pages and other thyroid sites exist.
Behind the scenes I know there has been talk about what to do about this. We do have thyroid awareness 'month' (good start), but we need more than that. The books are there, thats a good dent but.........most doctors could care less. What I think: We need a main global or continental group 'voice', patient organization ect to push medical in the right direction.
This is important. So what to about it do starts by seeing to what 'thyroidians' here have to say, everyone.. 'vet' members to newbies.........whatever it is think about it, let the brainstorming begin.........
In addition to the poll, say what you have to say. I will bump this up on occasion, as this effects everyone here.
LM
"We have been exploited for years by the drug company/physician relationship. Perhaps we could in some way get in the middle of that relationship and use it to spread the word to physicians. I think we have to target and educate doctors. The drug companies already know how to do this and have a very effective network. Is there room for us in there?"
- Endless possibilities if we had 'people power'. I wonder if this approach has ever been tried. It would be interesting to know if drug company reps even know the inns and outs of lab testing that determine the use of their products.
- Endless possibilities if we had 'people power'. I wonder if this approach has ever been tried. It would be interesting to know if drug company reps even know the inns and outs of lab testing that determine the use of their products.
I don't think it's necessary for the people to lose control of the intended direction. As far as changing testing standards and improving diagnosis is concerned, patients and drug companies interests are the same. I agree that endorsing any one therapy would be counterproductive. However, I think it might be possible to get some help from the drug companies without backing any particular product...increasing the customer base is going to benefit all of them ultimately.
As far as getting the word out to doctors is concerned, drug companies, far and away, have the attention of doctors more than anyone else. They already have their very effective marketing tools in place.
Target, Wal-Mart and their competitors can all support the MS 150 and use it as an opportunity to out-do their competitiors (in community support). Why can't Abbott, King, Forrest, and other thyroid drug manufacturers "cooperatively" help us increase their customer base?
Money is a major issue in getting any patient initiative going. Most of us don't have the resources to do it on our own. Drug company profits make oil company profits look like pocket change. We have been exploited for years by the drug company/physician relationship. Perhaps we could in some way get in the middle of that relationship and use it to spread the word to physicians. I think we have to target and educate doctors. The drug companies already know how to do this and have a very effective network. Is there room for us in there?
As far as getting the word out to doctors is concerned, drug companies, far and away, have the attention of doctors more than anyone else. They already have their very effective marketing tools in place.
Target, Wal-Mart and their competitors can all support the MS 150 and use it as an opportunity to out-do their competitiors (in community support). Why can't Abbott, King, Forrest, and other thyroid drug manufacturers "cooperatively" help us increase their customer base?
Money is a major issue in getting any patient initiative going. Most of us don't have the resources to do it on our own. Drug company profits make oil company profits look like pocket change. We have been exploited for years by the drug company/physician relationship. Perhaps we could in some way get in the middle of that relationship and use it to spread the word to physicians. I think we have to target and educate doctors. The drug companies already know how to do this and have a very effective network. Is there room for us in there?
Good insight, Goolarra. I was surprised at the overall lack of interest in 'national events' in this poll. And the money thing is a big one. Put them both together = National events themselves can be a way of raising money. Think of MS, many know about it from MS events. The biggest bike ride in my state is the MS 150, it generates a lot of money (you pay to do it) and it raises awareness like crazy - all the local media mentions it.
And there is that new national coalition "Coalition for Better Thyroid Care" - what they have in plan is a mystery to most of us.
As you can tell, I've thought about this for a while. The thing with getting pharma involved is 'the people' lose control of the intended direction. Which is proper testing and being open to ALL thyroid meds that are available. Dont need brand 'X' stomping on brand 'Z', that would defeat the purpose. I think health 'related' sponsors are the best approach. Remember, companies sponsor events, not because they care, but for advertisement (money). The sponsors for the very successful MS 150 are not drug companies. Its everyday products you see at Target and local corporations (it looks good for them, community support type of stuff). I worked for a place that was a major supporter - but they made automotive and industrial products of all things.
And there is that new national coalition "Coalition for Better Thyroid Care" - what they have in plan is a mystery to most of us.
As you can tell, I've thought about this for a while. The thing with getting pharma involved is 'the people' lose control of the intended direction. Which is proper testing and being open to ALL thyroid meds that are available. Dont need brand 'X' stomping on brand 'Z', that would defeat the purpose. I think health 'related' sponsors are the best approach. Remember, companies sponsor events, not because they care, but for advertisement (money). The sponsors for the very successful MS 150 are not drug companies. Its everyday products you see at Target and local corporations (it looks good for them, community support type of stuff). I worked for a place that was a major supporter - but they made automotive and industrial products of all things.
You and I have discussed this, but I'm going to bore you for a while just to keep the discussion going.
Perhaps all three options have to be pursued simultaneously.
Media coverage will help get the word out among patients and potential patients. After all, it was Oprah, Dr. Oz and my husband who diagnosed me hypo after multitudinous doctors had neglected to test thyroid hormones. However, I doubt this will have any major effect on doctors and how they test and treat thyroid.
National events would get the word out to patients, and might even have an influence on doctors, especially if the medical community could be involved in some way. However, it takes funding or a lot of expense on patients' part to get a national coalition together for events.
Trainiing "open-minded" doctors? Definitely...it's something we can all do, no matter what else is going on with media and national events. But, I think you're right, LM, med schools is where you have to train them, and I don't know how you go about having an influence there.
What about funding? Would the drug companies play ball with mere mortals (patients) who might widen their customer base by increasing the number of thyroid patients diagnosed and treated? Given that "Synthroid", for example, has almost the same brand recognition enjoyed by Xerox, FedEx, Google, etc, would Abbott Labs be willing to fund a patient coalition that would enlarge their patient base? Would a direct recommendation of their product have to be part of any financial arrangement? I'm not suggesting playing the same game here that doctors have been playing with the drug companies, but there are very practical considerations (money) in getting something like this going.
Perhaps all three options have to be pursued simultaneously.
Media coverage will help get the word out among patients and potential patients. After all, it was Oprah, Dr. Oz and my husband who diagnosed me hypo after multitudinous doctors had neglected to test thyroid hormones. However, I doubt this will have any major effect on doctors and how they test and treat thyroid.
National events would get the word out to patients, and might even have an influence on doctors, especially if the medical community could be involved in some way. However, it takes funding or a lot of expense on patients' part to get a national coalition together for events.
Trainiing "open-minded" doctors? Definitely...it's something we can all do, no matter what else is going on with media and national events. But, I think you're right, LM, med schools is where you have to train them, and I don't know how you go about having an influence there.
What about funding? Would the drug companies play ball with mere mortals (patients) who might widen their customer base by increasing the number of thyroid patients diagnosed and treated? Given that "Synthroid", for example, has almost the same brand recognition enjoyed by Xerox, FedEx, Google, etc, would Abbott Labs be willing to fund a patient coalition that would enlarge their patient base? Would a direct recommendation of their product have to be part of any financial arrangement? I'm not suggesting playing the same game here that doctors have been playing with the drug companies, but there are very practical considerations (money) in getting something like this going.
OK 'thyroidians', lets hear some more on your opinions of thyroid awareness Thursday morning.
I think Media is top on the list. People are express learning and usually turn to a quick thing like that to get their info.
I love that you are on the band wagon trying to get the effort of awareness out there for everyone LM.
You're super and I am so happy to see how strong you've become both with your condition and your efforts to end this for so many too.
Remember an actual Coalition is in place trying to do alot for all of us. Facebook's - Coalition for Better Thyroid Care is active and doing alot.
I participate there too.
I love that you are on the band wagon trying to get the effort of awareness out there for everyone LM.
You're super and I am so happy to see how strong you've become both with your condition and your efforts to end this for so many too.
Remember an actual Coalition is in place trying to do alot for all of us. Facebook's - Coalition for Better Thyroid Care is active and doing alot.
I participate there too.
"I believe that things have to be changed on 2 levels: the first one being what doctors are actually taught in med school in regards to treating thyroid issues; and the second one being that all patients must understand that "the doctor isn't always right"."
- Yes to both. I should have stated what can 'thyroidians' do to help make a change. The #1 issue is Med school training, unfortunately there is limited influence we have on this. So what can we do as patients, some of us can 'train' an open minded doc - let him/her know what works. But we must get the word out to current patients that are not treated correctly, and how do we do that? - Some sort of media always works. At least 50% of people are influenced by what they read or here beyond the internet.
- Yes to both. I should have stated what can 'thyroidians' do to help make a change. The #1 issue is Med school training, unfortunately there is limited influence we have on this. So what can we do as patients, some of us can 'train' an open minded doc - let him/her know what works. But we must get the word out to current patients that are not treated correctly, and how do we do that? - Some sort of media always works. At least 50% of people are influenced by what they read or here beyond the internet.
COMMUNITY LEADER
I voted for "train" an open minded doctor, because the media and we, patients, can say what we want; we can have all the national/international organizations (there are already several) we want, but if the doctors who are treating us, don't listen and believe what we say, we will never get anywhere.
I doubt you are going to find very many doctors who will come take a look at MH thyroid (or most other forums) to see how we feel, and what treatment works best for us, much less take heed.
Doctors are being taught certain things in med school and it seems that most of them are not willing to venture too far afield from that training, except for those who go from one extreme to another.
I think another option on your poll might have been: Change the training doctors get at the med school level to include new research as it becomes available, so they go into their practice, already informed about what will help their patients. As it is, we have the same old professors teaching the same old ideas to the new students who will be our next generation of doctors; therefore, we keep getting the same old level of care.
In view of this, I think it's very important for us, as patients, to try to spot those doctors who might be open minded enough to actually think a patient is intelligent enough to know how they feel, and what makes them feel better or worse.
There are a few doctors who don't mind having a patient who actually knows something; doctors who will read articles brought in by patients; doctors who don't get offended or arrogant when we research our illness and know what we are talking about. There are those doctors who will readily admit that they can still learn things. Those are the ones we need to reach out to.
While I do see an endo who treats my thyroid issues very well, I also have a pcp, with whom I have to argue, nearly every time I see him, because my TSH stays low. I've finally got him to the point where he will test for both FT3 and FT4. When I first began seeing him, he only tested TSH, FT4 and TT4. By sharing lab reports ordered by my endo, I've been able to get my pcp to test both FT3 and FT4. That's one step in the right direction.
I am now in the process of trying to get him to understand that in my (and many other) case, TSH is nothing. He's not totally convinced, but is getting better. Last time I saw him, he commented that my "TSH indicates hyper, but the FT's are okay, so we'll leave the med as is". I was actually looking for an increase; so, the problem now, is that he doesn't know how to use those results to my advantage. His thought process is: if they are in the "normal range", they are fine........... we all know that's not right. I am trying to get him to understand that as my levels rise, I feel better, my symptoms diminish, etc. So far, he's not convinced, and whenever I need an increase in med, I still have to rely on my endo because the pcp can't stop looking at the TSH.
My point, though, is that my pcp HAS listened in regards to the testing, and I hope that over time, I can get him to look at the actual hormone results and understand that the way I feel has a direct relationship to my FT3 and FT4 levels; that simply being in the "normal range" is not good enough.
The process I'm going through with my pcp, is not painless by any means. It's often very frustrating and I have left there almost in tears, more than once, because he wouldn't listen. This should not have to happen to any patient.
I know I'm one of the lucky ones, though, because I have my endo to fall back on. It usually turns out that I see them within a week or so of each other, so whatever my pcp insists on doing (usually decreasing dosage), I can get my endo to undo; or if my pcp refuses to increase my med, I can get my endo to do it.
The thing that I have to wonder about, with my pcp, is -- does he only test FT3 and FT4 for ME because I insist on it, or has he learned to do it for other patients, as well? My fear is that he treats his other thyroid patients with the "business as usual" attitude, and they, then, would remain ill, because they might not have researched like I have, or they might not question their doctor, like I do.
Many patients are of the mindset that "s/he's the doctor, s/he must know what s/he's talking about"......... we all know, that's not a correct way to think.
I believe that things have to be changed on 2 levels: the first one being what doctors are actually taught in med school in regards to treating thyroid issues; and the second one being that all patients must understand that "the doctor isn't always right". They are human and they make mistakes; they tend to get "high on themselves", arrogant and determined that they know best. I've had doctors ridicule me for letting them know about research I've done; many doctors think there is too much medical information available on the internet, and will not even listen to a patient who has gathered information via the web.
These are the things that need to change.
I doubt you are going to find very many doctors who will come take a look at MH thyroid (or most other forums) to see how we feel, and what treatment works best for us, much less take heed.
Doctors are being taught certain things in med school and it seems that most of them are not willing to venture too far afield from that training, except for those who go from one extreme to another.
I think another option on your poll might have been: Change the training doctors get at the med school level to include new research as it becomes available, so they go into their practice, already informed about what will help their patients. As it is, we have the same old professors teaching the same old ideas to the new students who will be our next generation of doctors; therefore, we keep getting the same old level of care.
In view of this, I think it's very important for us, as patients, to try to spot those doctors who might be open minded enough to actually think a patient is intelligent enough to know how they feel, and what makes them feel better or worse.
There are a few doctors who don't mind having a patient who actually knows something; doctors who will read articles brought in by patients; doctors who don't get offended or arrogant when we research our illness and know what we are talking about. There are those doctors who will readily admit that they can still learn things. Those are the ones we need to reach out to.
While I do see an endo who treats my thyroid issues very well, I also have a pcp, with whom I have to argue, nearly every time I see him, because my TSH stays low. I've finally got him to the point where he will test for both FT3 and FT4. When I first began seeing him, he only tested TSH, FT4 and TT4. By sharing lab reports ordered by my endo, I've been able to get my pcp to test both FT3 and FT4. That's one step in the right direction.
I am now in the process of trying to get him to understand that in my (and many other) case, TSH is nothing. He's not totally convinced, but is getting better. Last time I saw him, he commented that my "TSH indicates hyper, but the FT's are okay, so we'll leave the med as is". I was actually looking for an increase; so, the problem now, is that he doesn't know how to use those results to my advantage. His thought process is: if they are in the "normal range", they are fine........... we all know that's not right. I am trying to get him to understand that as my levels rise, I feel better, my symptoms diminish, etc. So far, he's not convinced, and whenever I need an increase in med, I still have to rely on my endo because the pcp can't stop looking at the TSH.
My point, though, is that my pcp HAS listened in regards to the testing, and I hope that over time, I can get him to look at the actual hormone results and understand that the way I feel has a direct relationship to my FT3 and FT4 levels; that simply being in the "normal range" is not good enough.
The process I'm going through with my pcp, is not painless by any means. It's often very frustrating and I have left there almost in tears, more than once, because he wouldn't listen. This should not have to happen to any patient.
I know I'm one of the lucky ones, though, because I have my endo to fall back on. It usually turns out that I see them within a week or so of each other, so whatever my pcp insists on doing (usually decreasing dosage), I can get my endo to undo; or if my pcp refuses to increase my med, I can get my endo to do it.
The thing that I have to wonder about, with my pcp, is -- does he only test FT3 and FT4 for ME because I insist on it, or has he learned to do it for other patients, as well? My fear is that he treats his other thyroid patients with the "business as usual" attitude, and they, then, would remain ill, because they might not have researched like I have, or they might not question their doctor, like I do.
Many patients are of the mindset that "s/he's the doctor, s/he must know what s/he's talking about"......... we all know, that's not a correct way to think.
I believe that things have to be changed on 2 levels: the first one being what doctors are actually taught in med school in regards to treating thyroid issues; and the second one being that all patients must understand that "the doctor isn't always right". They are human and they make mistakes; they tend to get "high on themselves", arrogant and determined that they know best. I've had doctors ridicule me for letting them know about research I've done; many doctors think there is too much medical information available on the internet, and will not even listen to a patient who has gathered information via the web.
These are the things that need to change.
Here in Oz. We have far to much emphasis on Breast, Prostate, Bowel cancers. Diabetes is heavily pushed as well as heart disease. But Thyroid issues??? Pffft! So I don't think it is just a US based problem but probably world wide!
Speaking of faces alfonsia, I bought a t-shirt which states, "I am the face of Thyroid Disease" already getting asked what the heck does that mean? Then the education begins!
I am thinking of writing a small article for the local newspaper. Perhaps some of you could do that too, for your own local paper. It doesn't have to be a rant, just an education of sorts.
Let's get this out there and HELP people become aware!
Speaking of faces alfonsia, I bought a t-shirt which states, "I am the face of Thyroid Disease" already getting asked what the heck does that mean? Then the education begins!
I am thinking of writing a small article for the local newspaper. Perhaps some of you could do that too, for your own local paper. It doesn't have to be a rant, just an education of sorts.
Let's get this out there and HELP people become aware!
I think more media would be more effective.
I do not think I am able to "train" any doctor, I think the open minded still know way better than me. I would say "suggest" to an open minded doctor? That is what I have been doing.
I get informed myself, and then "suggest". Not of course through the media (TV mostly), because the media does not have much to say about the right diagnosis and treatment of thyroid disease. What I have heard it is the usual, classic, old, point of view.
Web sites are good. Media-Internet should work. People spend a lot of time on the Web, which you can surf even from your mobile. What about a Mary Shomon interview on Internet on a health channel? Or a panel discussion that we can watch on Internet?
Maybe that is already out...I would like to SEE advocates, doctors, closed minded physicians, pharmaceuticals and patients discussing thyroid disease ALL the time.
I would like to see all the resources (Websites, books, interviews and this forum) listed in some place, so we patients and others can learn more.
It took me a long time to get to this point because I was not aware of the resources and information available...if people knew...
We need faces. There are books, forums, websites, without faces...
I do not think I am able to "train" any doctor, I think the open minded still know way better than me. I would say "suggest" to an open minded doctor? That is what I have been doing.
I get informed myself, and then "suggest". Not of course through the media (TV mostly), because the media does not have much to say about the right diagnosis and treatment of thyroid disease. What I have heard it is the usual, classic, old, point of view.
Web sites are good. Media-Internet should work. People spend a lot of time on the Web, which you can surf even from your mobile. What about a Mary Shomon interview on Internet on a health channel? Or a panel discussion that we can watch on Internet?
Maybe that is already out...I would like to SEE advocates, doctors, closed minded physicians, pharmaceuticals and patients discussing thyroid disease ALL the time.
I would like to see all the resources (Websites, books, interviews and this forum) listed in some place, so we patients and others can learn more.
It took me a long time to get to this point because I was not aware of the resources and information available...if people knew...
We need faces. There are books, forums, websites, without faces...
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