For 18 years, I have tried to change the mindset that Type 1 diabetes is a childhood disease, and to get people with adult-onset Type 1 diabetes correctly diagnosed and treated. I have tried to get diabetes organizations interested, I have tried to get doctors interested, to absolutely no avail. Every year, thousands of people with adult-onset Type 1 diabetes are misdiagnosed as having Type 2 diabetes, an altogether different disease, strictly because of age not etiology (disease process). Those who are misdiagnosed can experience rapid onset of complications and even death. But is anyone in the medical community interested? Absolutely not. I have had doctors and people in leadership roles in major diabetes organizations dismiss me, put me down, attack me personally, and tell me I am wrong; I have never had one single doctor or person in a diabetes organization say, “You have a point. It really would be so much better if people were immediately diagnosed correctly and treated correctly for the disease they have.”
I don’t know of any disease that has such a high rate of misdiagnosis. And no one but patients care. Can you tell I am completely fed up and frustrated?!
Is this among endocrinologists, or just among GPs and more general doctors? In my experience, non-endocrinologists usually have very little idea of what they are talking about with regards to diabetes, either way.
It can be exhausting to advocate for years and see no results. I have been there, done that in regards to accessibility for people with visual impairments.
Have you thought about trying to take another approach to advocacy? Instead of simply "awareness" of something, are there one or two "things" that doctors could do to hep the situation? Maybe you have tried this already. I often feel like maybe people actually are interested in what I'm advocating for but are either not sure what to do about it, or face obstacles (time, money, etc.) that prevent them from taking any action, and I wonder if there's something I could do to help change that, and therefore indirectly change whatever I'm interested in.
For example, what about developing a network of doctors who are known for accurately diagnosing adult-onset Type 1, so patients could ask for referrals. And maybe developing a fund of some sort to help out financially if patients needed it. (I don't know much about how the U.S. system works, but I know money is always an issue.)
I, personally, have seen you post to this site so many times steering people toward an accurate diagnosis ... I think that alone shows you have had some impact!
I agree this is a huge problem, although I sort of also feel that it may be bound up with the very conservative approach to T2 in general "well, try 500 mg of Met for 6 months and, if that doesn't work, we'll try 1000 mg for 6 months..." that leaves patients with like a year of passive treatment and, in many cases, very little feedback from the doc *nor* learning a useful approach to managing BG.
In terms of $$$ diabetes is a HUGE drain on the public health system and I think that revamping the approach to T2 and dx and target issues in general would be useful superstructural means of approaching T2 and LADA, etc. that would lead to very significant improvements in health care at a low cost.
I totally understand your frustration, Melitta, but I want to echo Jen's point that you have helped so many people on here advocate for themselves and get their correct Type 1 diagnosis and those people in turn (one would hope) become teachers to others, asking, for example whether a newly diagnosed "type 2" who doesn't fit the profile has checked into the possibility that they are in fact type 1. I also think the doctors that receive requests for clarification from their patients that they then follow to their natural conclusion are (again, one would hope), accumulating data to inform a paradigm shift in diagnostic procedures.
Having said all that, and with all respect for all the hard work you do on this topic I'm wondering if part of your feeling burned out is because you are banging your head on a solid brick wall. In my experience a large number of doctors are very resistant - not at all open to receiving what they perceive as "medical information from non-medical personnel, including their own patients. One experience I had was when I ran a program for senior women alcoholics. Many of these women were given generous prescriptions for pain kills, benzos, etc, which they were abusing along with their alcohol. The doctors prescribed generously because of the stereotype of the "sweet little old lady" who couldn't possibly be an alcoholic and a prescription drug addict. But when I, in my position as Program Director shared my expertise about addiction with the doctors, telling them their patients openly admitted to abusing the meds, the doctors would not hear it. Because, though I was a professional, I wasn't their kind of professional. That's just one example I've experienced.
I know doctors are the ones who do the actual diagnosis but there are other medical professionals such as cde's, NP's, PA's and RN's who might be more receptive and who also have the ear of the MD's. What about getting a speaking engagement at for example a CDE convention? Perhaps DHF can use their connections to assist you in doing this?
I was diagnosed as a "juvenile diabetic" a LONG time ago. It was just a given--anyone with what is now understood as T1 was labeled that way. The ADA and other charities (JDRF, for pete's sake) still refer to it as juvenile...
Honestly, I find it demeaning that in 2013, with all the new research, understanding of the disease, new advancements, that I am still referred to as a juvenile diabetic.
This is a sore spot for me. I am not a juvenile diabetic at 61--I AM A TYPE 1 DIABETIC!!
OR even better, a Person With T1 Diabetes....PWT1D?
As others have said, you have accomplished much with your advocacy for this issue here. I'm sure you are not aware of all the people that your written words have touched.
Large issues don't often move when advocates for change start to push. Yet, given enough time and effort, some things do change and sometimes very rapidly. It's as if the issue doesn't budge until it hits a tipping point. Your efforts are important and if you choose to continue, the larger policy changes will eventually yield.
I think it would be great to have more PWD, like you, actually take to a podium at one of the many professional meetings all our diabetes practitioners attend. We are not merely subjects of medical inquiry and research, we are living, breathing human beings with a brain and a cogent perspective. Medicine is not praticed in a vacuum!
I think that it would be useful to have some sort of association of PWD, group the groups together as it were. There are a lot of us and we all enjoy kibbitzing with each other but we are very fragmented. A united front would be useful. We should establish standards, our own and varied according to experience, personality and the support level of the patient as unsupported patients may have challenges running into the suggestion "well, just test more..." that some of us (*cough cough*) toss around. I think there's a few simple things we could argue:
1) testing should be a civil right 2) goals should not be the same for everyone but should be aimed for success, rather than meeting goals. Insurance companies' role in determining goals should be limited to supporting PWD to achieve our goals (see #1...by "testing" I would include A1Cs, doctor visits, CDE contacts, etc...)
3) Diabetes' related expenses should be tax deductable. The main reasons the cost of supporting us is so high are the total lack of focus of the medical community and lack of goals coupled with the "leashes" that insurers, led by government led insurance like Medcare and Medicaid, whose policies clearly lack any scientific foundation whatsoever, These need to be abolished as, as noted in point one, they violate our civil rights. Given that, at least to me, Blue Cross sends me a yearly letter stating "you need four strips/day" to remind me of Medicare's position, I am certain that there's collusion among the enemies. I suspect that a class-action lawsuit would be the best way to investigate it. I suspect the case would be enormous and that the members of the class would stand to recoup very little $$ out of it but these people don't listen to reason. They depend on us being fragmented and isolated. Together everyone achieves more. Strips.
Melitta, I know you've reached many people just on this website alone, but your efforts quite possibly could have somehow also delineated to my own Internal Medicine doctor who correctly diagnosed me as a 37 year old T1 just under a year ago.
Right away when I called her and told her I'd randomly checked my own sugar and saw a reading of 386, she had me come in for another full round of fasting bloodwork. (I had just done that with her 4 months prior and everything was perfect-even my blood sugar). Since she had my prior results, then so quickly my numbers changed, she told me she was almost certain I was a Type 1 diabetic, but she would order the more definitive antibody and c-peptide tests. She did that, and it confirmed her initial inkling of a correct Type 1 diagnosis, and she simultaneously referred me to an Endo. She is almost 40, so fairly young for a doctor, but my point is perhaps that you ARE getting the word out--particularly to the younger generation of doctors that aren't set in their ways and perhaps you ARE getting the word out to those that train them in medical school, because she didn't miss a beat in my diagnostic process. Then I came onto this site and saw that it doesn't always happen like that for everyone, so I was thankful. Don't underestimate the size of the task you're taking on...it takes time to change an entire medical community, but you are making it happen little by little as quickly as humanly possible. My doctor's accurate diagnosis is just one example and I'm sure there are others.
Melitta , I am looking for the right answer and am at a loss .I plan to contact some people ( Canadian ) after the Christmas Season ...as you well know , I am one of those misdiagnosed in 1983 ( age 42 plus ) ...and my GP listened when I asked to put me on insulin about 6 weeks later .
Melitta, at the risk of appearing flippant, you most certainly got through to me -- indeed, you have spoken for me and every other LADA on this board. For that, we are most grateful.
As a scientist, you appreciate hard facts and statistics -- but numbers are just figures that don't tell the full story. What do you think of launching an effort to get those of us willing to write and share our stories? I should think a sizable volume of personal submissions stands a chance of making an impression. We can start by pleading your case to endos who are themselves T1s. (Makes me crazy that the majority of endos have never personally experienced diabetes -- how the h*ll can they know what we deal with?)
And yes, the usage of "we" means I will help you in this effort however I can. We'll call it Team Melitta!
Hi Zoe: As usual, you are spot on, and I also so appreciate your kind and thoughtful words. I actually some time ago gave up on doctors and diabetes organizations, since I was tired of being disparaged and personally attacked. But I recently applied for funding for "patient-center research" and was turned down. No surprise. The "patient-centered research" is just the U.S. medical community in disguise, and why should they be interested in correct diagnosis and treatment? The medical-powers-that-be do not care one iota--only patients care. Grassroots it is.
You do a great job here and don't give up! There are a lot of us and we will make our voice heard one way or another. I for one still cannot believe all the mistakes that happened with my t1d diagnosis and how ignorant some of these medical professionals are, I guess it shouldn't surprise me though from past experiences non d. However I still just think wtf is wrong with these people??? I don't understand the response to you trying to change it either. It's just pure stupidity. I think speaking at as many D events as you can and the video are great ideas.
I know the misdiagnosis problem all too well, I was misdiagnosed on paper as a type 2 even though everyone but the internal medicine doctor I got after diagnosis was veeeeeery unsure of it but unable to really do as much about it. ER doctor suspected 1 or LADA at diagnosis but could not do the testing to figure it out (though my endo did nothing they couldn't do?) , CDE and Dietitian both were very confused by my original doctor's apathy to the issue and basically hinted to me that I needed an endocrinologist asap, my insurance no longer covered that team so I had to move on anyway .I feel like my instincts were pushing me not to settle with the type 2 diagnosis as it didn't seem right (I was 22, I've never been overweight, always have had a pretty decent diet, try to walk or do some sort of activity every day, have healthy cholesterol and for the most part blood pressure (sometimes a little off but not dangerously I don't think, and I have only one pre-diabetic and one diabetic otherwise (type unknown, but adult type 1 suspected) in my entire family history) . My endocrinologist didn't do even all that much testing on me to figure it out that I'm actually a type 1 (part of it might of been the fact he was diagnosed with type 1 at the same age as me and knew how it was, his daughter had a similar experience to mine as well), but I'm pretty confident in my type 1 diagnosis. The biggest thing being Metformin didn't do a single thing for my sugar in the 2.5 months I took it, but insulin helped immediately and has continued to keep me at healthy numbers. I went from a 7.2% to a 6% on my a1c when switching from metformin to insulin . I do feel glad that I got into an endocrinologist and got it sorted out before it could of been too late as I was getting worse and worse until I got on insulin.
I wish there was a bigger push for proper typing of adults with diabetes, I'm not honestly sure what I could do other than just tell my story a lot.
This stuff is ever changing. The trouble is that doctors are not alwYs making the rules often times it is corporate decisions deciding this stuff
My doctor just told me that he wants to change my diagnosis…
I was diagnosed at 21 type 1 obvious fast onset. I still had clock sacklike virus in my system.
Now my doctor tells me that my diagnosis should be LADA because I was over 18.
I asked him to please not do that because I know that a change like at could effect my insurance benefits. Like if insulin pumps are avail to both. Or numbers of test strips.
It seems like those things are almost decided randomly.
Truth is that LADA and type 1 should be treated the same way. But I don’t trust that.
The truth is that many doctors don’t think it out and just go by age and weight etc.
I was very thin at diagnosis… But I bet if I was fat, I would have had a t2 diagnosis back then.
Timothy, is your doctor an endo? I think that is totally crazy that he would want to change your diagnosis from type 1 after this amount of time. Lada is not an official diagnosis as far as I'm aware and it is treated the same way as type 1 also as far as I know unless you're misdiagnosed as type 2. Things like this is why I want there to be very clear understanding that type 1 is type 1 and we need insulin to stay alive. Have you asked him why he wants to do this? I would find another doctor, don't let his insanity affect your health.
That sounds like BS to change your type when there is no age limit for type 1. I'd switch if my doctor did that 180 on me out of nowhere with no evidence to it really other than my age. Also I wasn't overweight or even close when I got a type 2 diagnosis. I would have to gain at least 20-25 lbs to be overweight at all. IDK if crappy internal medicine doctor thought I was gonna gain all that out of no where or what when I struggle to gain like a little bit of weight back to fit my clothes again from before my type 2 misdiagnosis, even with insulin which apparently makes people gain weight? I haven't gained any at all. I feel like I have to summon a super power out of nowhere to gain a pound easily .
I've seen this too and several times I've realised that the person I'm talking to has been misdiagnosed. I always send them back to their GP [ I'm in Britain with NHS cover] One thing which helps in the safety of these patients is the rapid escalation to insulin therapy in ALL cases of diabetes, which the British system is encouraging.
I'm also campaigning very actively to get information to T2s about the effects of diet.
It's very relevant in T1 also. My T1 husband has improved his control and aall his side effects since I persuaded him to reduce his carbs AND his insulin rather than follow the current medical manta of "take a bit more insulin"
Hana
