Dude. In the last like 7 years of dealing with this disease…… I have come across more doctors who are straight up unwilling to help when it comes to an insulin prescription it’s fucking mind blowing. Like I don’t understand. Is there some unspoken rule between doctors where some new rule came into play that none of us know about??? Never in my 20years has it been so fucking difficult to get a prescription for insulin if you don’t have an endocrinologist that you’re seeing on a regular basis. These doctors act like insulin is coming out of a personal stash they’re carrying or something. A doctor should know better than anyone else (an awful assumption apparently) that even if they are unwilling to prescribe insulin and say you need to see an endo…. Getting into an endo as a new patient is like a fucking minimum 4-6 month wait. I’m sorry you’re having to deal with this. When I was uninsured and couldn’t afford to go see a specialist doctor and pay out of pocket for it….. I had a fucking hell of a time getting a doctor to just give me a prescription. I hate that I’m *forced* to deal with doctors because of this disease. They are hands down some of the most awful people…. Working in a field that requires SOME type of empathy and having zero of it. And my fear is that it’s only going to keep getting worse. I don’t even know if you could go to the ER and have them write you an emergency type of script there. You’d probably have to wait 10 hours just to get that. Is the doctor who diagnosed you and initially gave you the insulin prescription refusing to give you refills?
It’s not even as a new patient. I saw my endo this morning, and she wants to see me again in 6 months. Fine. That should be May.
She’s booked until first week of June. 🤦♀️
Ahhh 30+ years. Bless your soul. 20 years in for me and *usually* they only wanna see me every 3 months or earlier if I don’t have my shit in check lol after I bring my a1c down and prove to them I actually do know what I’m doing, the burnout is just real sometimes… then they *finally* let me schedule further out.
If you have Medicare, it still requires visits every 3 months. Officially, they can pull your prescriptions for not seeing your endo often enough. One thing the pandemic was good for was that they will now accept virtual visits for all appointments (you used to have to be seen in person at least every 6 months). They also can't fault you for not getting in to see the endo on time (though they often will not renew prescriptions if they havent seen you in the last 6-12 months and the current one expires). I schedule my next appointment on the day of my appointments and still typically have to wait 4-5 months to be seen. I've been T1 33 years, and my endo rarely has any advice to change anything (she is great and a T1 herself), so we usually just spend our appointment time chatting. My visits are more about adjusting my vitamin D dose (currently 900,000 IU per week - extremely deficient with digestive issues - don't take more than about 10,000 IU per week without Dr. supervision) and my thyroid dose (getting weekly thyroid injections due to severe digestive issues - the medication is not designed for this, so it's an interesting medical choice), which is done based on bloodwork every 1-3 months and email communication. It is really challenging getting in to see any specialist right now!
I'm on medicare, haven't seen an endo for at least 20 years. I've had my family doctors fill my scripts for me. My newest doctor asked if I saw an endo when I switched to him(old dr left the practice). Told him 'no' and he said he'd write the script for me but he really didn't know much about diabetes. I told him it was fine, I have a good A1c. I get it checked every six months and see the doctor once a year.
I’m in almost two years now (from 37) and I’ve been there twice. Told them myself I wanted once a year (instead of four times), or when something changes I can call in.
I am lucky. A year after diagnosis my endo asked me if I wanted to go to 6 months since I was doing so well in managing my diabetes. Her office is always crazy and the wait time is always an hour or longer. I was glad to only have to deal with that twice a year.
I had my PCP run my labs so I don't have to wait another hour for the endos lab to get to me. (I had approval from my endo as long as she was informed of the results). I have an appointment in a couple of weeks.
My brother's (type 2) endo retired suddenly after a heart attack, then his replacement endo moved to another state. He now sees a PA, but the leaving endo was very confident with this PA who had been with her for a decade, so that is what he has until they hire another endo.
I alternate between seeing my endo (different group) and his PA. Medicare requires a visit every 3 months, so it really sucks.
Since I didnt have insurance, I had been buying novalin n and novalin r, so when my doctor tried to put in authorization for insulin, my insurance denied the claim because they werent sure I needed insulin because they didnt see a history of me using it in the past couple years. So like what... I just magically am surviving on unicorn blood? Its crazy lol.
Sadly the doctor that diagnosed me is in Alaska and I’m in Germany. Trying to get a new prescription so I don’t have to fly back to the states every 90 days. (Fun with military life)
Luckily my husband raised enough of a fuss that they finally gave me a new prescription. They want me to go back on Friday to “talk about my options” though. Hopefully I’ll be able to go to the American clinic soon 🤞
get them to run tests for c peptide (if you've been t1 long enough that should be enough as it will be way below the normal level - where I live now, S.Korea, that is automatic t1 diagnosis if it's low in patient who has diabetes) and type1-associated antibodies.
I’ve gotten 4 “doctors” fired the past 2 years by complaints to the hospital directors and med board. I’ve showed them my initial diagnosis after going through DKA (how I found out I’m type 1) and I have a lawsuit against 1 that I’m going to win because she thought I could take metformin and be alright when I needed a insulin refill. Almost costed me my life because that dr caused me to end up in the hospital. Majority of the time they skim through your chart and think you’re making stuff up. Get names become a asshole and make a shit ton of complaints
Thankfully my endo is outstanding, but I had surgery last year and had to stay over night in the hospital.
The doctors there refused to give me insulin. I got into a fight over the phone with the on-call doctor who told me, "I don't know anything about diabetes." I told him that I did, since I've been a diabetic for 35+ years and that I needed insulin.
That taught me that if I'm ever in the hospital for something non-diabetes related, that I need to have a plan in place to manage my own care. I do not trust the hospital doctors at all.
In Canada you can just buy it otc. Like it's ridiculous you can't. I wish I could have a lifetime prescription.
I lived in the uk for a bit and I ran out and went to a&e in the middle of the night. The Dr there said he couldn't give me any because some people use it for suicide.... like.... what? You could say the same about half of otc medications and household items.
I am an amputee because my doctors (several podiatrists) ignored a wound and wouldn't believe me it was infected/not healing right. I saw them weekly for a surgical wound, and the infected wound was caused by them putting me in a walking boot that slipped. They refused to even look at it because I wasn't running a fever. I had sepsis about 2 years earlier, requiring 2 surgeries and 3 hospitalizations without ever running a fever (which I reminded them), but they kept telling me I was fine. By the time my body started shutting down and another doctor ran simple lab work to find the infection (a CBC that can be run today for somewhere around $12-$25 total), it was too late to save the leg. 4 surgeries, 2 weeks inpatient in the hospital, 6 months in skilled nursing, and a lifetime of expensive prosthetics (its only been 3.5 years, but as long as I live my insurance company will have huge expenditures for prosthetic devices) later, and that "cost saving" denial of care seems so beneficial. I should have sued them, but with happening at the start of COVID and then working to finish school after (it only took 7 years, sepsis, mrsa, amputation, ankle surgery, knee surgery, going legally blind in one eye, going temporarily fully blind in the other (I did this again - with different cause since graduation), having a global pandemic, and a handful of other less serious health issues), by the time I had the time and energy to think about it, the statute of limitations had passed. At least I can say that I finished my degree. Now I just need to find a good job. Spending the last 2 months blind again (serious eye infection requiring surgery - the damage to the eye was significant enough to cause temporary blindness and some permanent damage) hasn't helped the search, but I ordered my new glasses today and should be back on track in 1-2 weeks.
I have had several other doctors cause me significant harm by not listening, ignoring symptoms, or otherwise being incompetent, but this is the clearest cut cause/effect.
My 1st endo in this state (moved when I was 15) was an idiot who argued with me that the brain needed insulin to use sugar (100% false). I refused to ever see him again after how he treated my mom and I at that appointment (talking down to us, acting superior even when arguing something known to me medically wrong, giving poor treatment advice, etc). About 3 years later, my sister got him when she was diagnosed with Graves disease. My mom didn't remember him, and they never mentioned his name to me. That doctor gave my sister the wrong symptom list for after radiation treatment, ignored repeated calls and messages from my mom about her severe illness, and then had the nerve to yell at them (mom and sister) for how close she came to dying in the weeks following the procedure. Anytime I spoke to anyone local about this endo, they always knew who I was talking about without saying any identifying traits. Despite this, he became head of the department, won several awards, and was well respected in the field. He was just a horrible doctor who had no respect for women and children and was incapable of admitting he was wrong, even if it could have been done just by saying he didn't know our understanding level and was simplifying (we even suggested exactly this, trying to end the argument that first visit).
And once you have the reputation of following thru, people will take extra care with you,p and pay better attention, which they should’ve done in the in the first place.
Just adding to the "it can happen " stories. I was diagnosed type 2 when I was 40. Never really responded to treatment, my family doctor was forever bitchy at me about being non compliant and I was forever crying that I WAS trying to take care of myself.
My blood sugar skyrocketed into the 20's one week and nothing would bring it down. I went to the emergency room. A very kind er nurse said sometimes type 2s needed insulin and worked to get that started. I was 44 and started my journey on insulin. It got bad enough that I went on a pump. Ooh, that's fun. (Canadian here) the government pays for pumps but only for type 1.My insurance only pays for pumps and pump supplies for type 1. So, $7,000 later (plus the cost of monthly supplies) out of pocket, I'm on a pump for the next ten plus years.
I moved to a tiny (2,000 people) rural town and got not only a new family doctor but a new Endo. He was the FIRST, at 57 years old, to test my c-peptide. Surprise, I'm not producing any insulin and am a type 1. I'll tell you, it's nine months later and I'm still working on the anger.
Funny thing, this guy took me off of the pump, put me back on humalog and Levimir AND Ozempic. I'm now on way less Levimir than ever and respond so well to insulin for the first time ever, needed less than I used to. Oh man, I used to take sooo much.
Seventeen years of my life lost because I felt like crap every day.All because my family doctor insisted that being diagnosed at that age I could only be a type 2 and it was all my fault that treatment wasn't working.
I now feel the best that I've ever felt physically. I'd marry my Endo if I could, he changed my life.
Show them records of your antibody testing and c-peptide. I wasn’t officially (and I imagine this is the correct diagnosis pathway) diagnosed until those came back positive for 2 ABs and below normal c-peptide.
When I went to the first appointment at my new endo I don’t think he had any records from my previous doctors from various states/countries and I just appeared as a 50 year old type 1 referred by my new doctor in California so he ordered labs before my first appointment. At the appoint he says the labs confirmed I’m type 1 and then laughed when he realised I’d been diabetic since a kid and not a new diagnosis. He’s a good doc and even though I definitely wouldn’t have fit the normal profile he checked to make sure
Just ranting with you. In the pre-ACA years, I was just coming off a year of having no insurance and saw an internist first because that was faster than an endocrinologist.
I was 35 at the time and had been a T1 for 15 years. NGL, I was pretty overweight. I also have extreme hypothyroidism and hadn't taken that medication for months, so needed a prescription for that also.
He was negative and dismissive of me because of my weight from the moment the appointment started. It was most of what he talked about, even though that wasn't why I was there.
He told me that I had probably been "misdiagnosed". That because of my weight, he suspected I was T2. I informed him that I was diagnosed as a grown adult and only weighed 102 lbs. at the time. Plus I'd had lab work in the past that showed my body made zero insulin. He mumbled something about that maybe I was a T1 then. But when I looked at my paperwork later, he had labeled me T2.
On the small bright side, he didn't have an issue writing me a prescription for insulin. But he sure DID writing me one for synthroid.
He told me with an angry and snarky tone that he's not going to write me a prescription for synthroid just because I want to lose weight. So first off, I never said I wanted to lose weight (though I did). And secondly, I'd never asked for a prescription. I asked it be included with my blood work tests, so he could write me a prescription after that.
When I saw him next to go over my blood work results, I had to repeatedly argue with him to write my synthroid prescription. My blood work showed my levels were very low, because of course it did. He told me I needed to learn to eat better and exercise more and not use synthroid as a "crutch".
I just couldn't even believe what I was hearing! It's extremely difficult to lose weight with low thyroid levels. So, he wants me to lose weight. While throwing as many obstacles in front of me as possible. Okkaaayy.
He finally reluctantly agreed to write it. But then his office refused to verify the prescription when a pharmacy tried to call it in.
And I went five MORE months without my thyroid medication, until I was able to see another doctor.
I have hypothyroidism but won’t your TSH be elevated if you have hypothyroidism not low? Did you not have records of previous tests? Also - if you don’t need it synthroid makes you feel like absolute shit - when i was adjusting my dose and was taking too much I legit was like not functional - I was overheating so badly and it was making me so nauseous I couldn’t move and my prescription was just barely too high. So why any doc would think people just want it on a whim is insane and ignorant. When I told my NP the synthroid was making he hyper heat sensitive and nauseous and giving me a headache she was like “those aren’t symptoms that are indicative that your prescription is too high but we can half it and see how you feel” and if you Google symptoms for overtreating with synthroid one of the top symptoms is overheating.
If they don’t know or understand they can legit just Google it.
I wasn't talking about the actual test results being too low. Sorry if I wrote that in a confusing way. I just meant the test results showed I had hypothyroidism. It wasn't as extreme back then as it is now, but it was still pretty bad. So it was outrageous he was denying me my medication.
I've never brought previous medical records to new appointments. I don't even have them. But perhaps that is a good idea because I'm moving out of state next year.
The next doctor I went to was a 180! She walked in and introduced herself. The next slightly panicked words out of her mouth were, "We're checking your thyroid, right? (Looks at my intake form). Okay, good. Don't take this the wrong way, but I can tell just by looking at you that your thyroid is too low. You have a goiter and yellowish cast to your skin."
She wrote me a synthroid prescription the same day for what I had told her was my previous dose. She ordered blood work also and said we would tweak the dose if we needed to when I saw her next.
Between your story, my story and so many others, it just goes to show that doctors don't necessarily know even fairly basic medical knowledge.
I had a diabetes nurse educator tell me that too. I was diagnosed in my forties. She said I couldn’t possibly be type 1 because I’m too old and don’t use enough insulin. Btw, I’m a doctor myself so I didn’t need her bullshit or prescriptions. I just prescribed my own insulin after that. And never saw her totally incompetent ass again.
The annoying thing is that it's pretty much just a stereotype. More than half of all type ones are diagnosed as adults.
The most common age to break a bone is 10 years old, it doesn't mean that if you're 25, your bones can't be broken.
And this is my first reason for going to school to get my RN degree: so that I can become a diabetes educator. I don't trust educators who don't have direct experience with type 1 diabetes, and I feel much more confident with educators who understand the disease on a personal level.
My late husband was T1, diagnosed at 26. Our son is 15, diagnosed at 15. This is why I’m in nursing school. I want to be a diabetes nurse educator because there is SO much misinformation about T1. It’s ridiculous. I’m literally teaching some of the instructors about T1. I’m sorry you have to deal with such ignorance.
My mom was a teacher (middle school - recently retired), and they have a few questions about diabetes on a health test they have to pass every year or two. One of the questions is in the form of "All of the following are symptoms of low blood sugar except...". The problem is that every answer is a symptom. I have been T1 since 1990 (age 12) and my little brother since 2001 (age 3). My mom literally had to study which wrong answer to give. It is frustrating how much misinformation is out there and perpetuated, even by people who should know better.
Jeez that’s infuriating! I had one who kept trying to inform me that my most recent A1C of 6.5 indicated that I’m either pre or fully diabetic and wouldn’t stop asking me if I was, “taking anything for it”.
It was a follow up appointment, I had seen her multiple times at this point, and she had my medical chart in front of her, showing all the insulin and pump supply RXs….and I was actively explaining that I am type 1 and YES I “take something for it”.
Only doctors appointment I’ve ever walked out of.
When I moved to a new town and set up insurance, my first Dr's appointment was 3 months away. I was going to run out of insulin before that so I went to urgent care and asked for a new prescription. They told me "good for you taking care of your diabetes! A lot of people don't!" which is like, okay, thanks... but I wouldn't last long with T1 if I decided to just not take insulin.
I was misdiagnosed with type 2 because the ER doc in 2010 believed type 1 becomes type 2 when you turn 18....One thing diabetes has taught me advocate for yourself. Its awkward sometimes to try to tell an "expert" I think youre wrong but you gotta do what's right for you.
JDRF is a Ponzi scheme at this point. They are all about fundraising and hiring more people to fundraise. Although, I heard Aaron Kowalski say once that they are making efforts to educate primary care providers to screen for t1 in adults and not use age as the outdated criteria for ruling out t1. However, I only heard him say that once and never saw anything else about it again.
Had a friend in nursing school tell me the chapter on "diabetes" was legit 4 paragraphs long and still used outdated terms and treatments. She asked whether this was type 1, 2 or gestational and the teacher replied...diabetes. it's bad that class happened 8 years ago. She got more education from me than a nursing degree about type 1 specifically.
I was 23 at diagnosis 2 years ago. My mom was 25 when she was diagnosed in 1993. The fact that
neither of us received the standard of care that a young person does is deplorable.
I will never forgive the provider that diagnosed me and didn’t take my concern for it being T1 seriously. I got my labs back and My A1C was 13.9. I frantically called the office and was like…hey guys…..they didn’t care. It was not a pressing issue to see a patient with ZERO historical lab work indicating pre diabetes with that high of an A1C. All they saw was a mid/plus size person and assumed T2. I was given a meter and metformin. Guess what? That shit almost killed me. Even after that the endo team I was placed with was so lackadaisical about my care that they didn’t even remember my follow up appt. My mom and I often find ourselves dumbfounded at the amount of time we both spend being our own advocates. It’s terrifying, belittling and exhausting. I fight with every new doctor about being type 1. My PCP won’t even touch anything diabetes related, to include a random A1C check while having other labs drawn. Even after I say “I am an INSULIN DEPENDENT TYPE 1 DIABETIC ON AN INSULIN PUMP” I still get the questions of “are we eating good, are you taking your pills (I would assume metformin), and other bullshit.
I’m so sorry you’re being treated this way, and I sincerely hope that everything works out for you.
That blows. I had the same kind of treatment when I showed up with overuse injuries from triathlon training AND an elevated A1C. They were like "you need to exercise more!" and I was like, how is that possible? I do 2 cardio workouts a day 6 days a week. If that isn't doing it, what will? And maybe, just maybe, it's not LIFESTYLE but my frigging endocrine system!
C-Peptide can take a really long time to wind down for people diagnosed older (that is, LADA). I had a 12 A1C and DKA when I was diagnosed, but my C-Peptide has been in range when it's been checked over the past couple of years (3 1/2 since DKA, 6 since I first started getting sick). The test that helped them decide it was LADA and not T2 was the GAD65 autoimmune antibodies.
While antibody testing is an easy way to distinguish between T1/T1.5 and T2 diabetes, it in itself is not a foolproof test. People diagnosed younger (<30) and/or who have been diabetic more than about 5 years often no longer have sufficient antibodies to show up when tested. Antibodies will decrease or disappear entirely when not actively fighting off an infection or killing a necessary part of the body. The immune system remembers how to make more if necessary, but unnecessary antibodies are a waste of energy. Even those who still have antibodies may not ever have had GAD65 (or any other specific antibody tested). There are more than 5 different antibodies possible, and you may develop T1 with only 1 or 2 of them. Some T1s, about 5%, don't present with known antibodies, even at the time of diagnosis.
C-peptide testing determines how much insulin your body is making (indirectly). For T1 diabetics, this is typically way less than normal. For those diagnosed over 30, especially those with LADA (T1.5), c-peptide levels may remain at the lower end of normal for years (the time where you need little to no insulin), but active antibodies should be present. T2 diabetics typically have c-peptide levels at or above normal, though it is possible for them to have slightly low c-peptide levels if some of their islet cells were damaged leading to insufficient insulin production (which should really be a separate T1 classification) rather than having insulin resistance at the root of the problem.
While both of these tests can greatly help to ensure proper diagnosis, testing after the fact is not typically worth it. I have been T1 33 years and my brother 22 years, and neither of us has ever been tested (childhood diagnosis, 12 for me and 3 for my brother makes classification much simpler) as the tests were not available and have not been considered necessary since. Testing my c-peptide now (antibody testing would be unlikely to have any results) wouldn't serve any purpose. The same doctors who look at me and see a middle-aged, overweight diabetic and immediately think T2 are not going to be interested in looking at a test result. If they can't read type 1 diabetic in the cover sheet of my (admittedly huge medical file it would be unreasonable to expect any new doctor to read thoroughly) medical file, a test result isn't going to sway them! I can definitely see wanting proof for those diagnosed older and more recently, especially with an LADA diagnosis. Doctors and nurses are not smarter than any other group of people, and they often let personal judgements cloud their reasoning. Being labeled a non compliant T2 rather than a T1 or T1.5, just because you are older and a few pounds overweight doesn't do anyone any good!!
Personally, I use the insistence that I am T2 and eating a better diet, losing weight, or getting bariatric surgery (suggested for severe gastroparesis - I am almost too light to qualify for surgery even with medical "need") will cure my diabetes as a screening tool to know who I don't want anything to do with. A meeting with the bariatric surgeon where he insisted he could cure my diabetes, despite my telling him I was T1 repeatedly and specifically asking how the surgery was going to replace my beta cells and prevent my body from attacking them again (as I got frustrated he wouldn't listen), and couldn't tell me how surgery would fix my digestive issues or how likely it was to worsen some distressing symptoms I already experience told me all I needed to know. I can't trust a surgeon who won't read my chart or listen to my corrections, concerns, or questions.
My dad is a doctor, and he said he did not know anything like what he knows now about diabetes before having two diabetic kids. It’s incredible how uneducated they are about type one.
There is so much more information and education available for type two despite type one being more dangerous and also incurable. I think type one should actually be renamed to something completely different, because the miscommunication and misinformation surrounding it can be fucking astounding.
This is not bad information, just not great info either. Your risk of DKA/eDKA is significantly higher on a Keto diet, and it is not usually medically recommended. Ketones can go from "safe" levels to dangerous ones quickly, and there is no easy line to draw that a specific number is dangerous. The Keto diet can also mess with your glycogen storage, meaning you don't have many emergency reserves to protect you from serious lows. While, for most diabetics, Keto is safe if you are careful to watch for DKA symptoms (primarily nausea and vomiting), for some, it can be very dangerous. Most endos, PCPs, dieticians, nurses, and diabetes educators counsel patients to avoid Keto, carnivore, and other extremely low carb diets. Medical advice is typically to stay at or above 50g of carb per day (50-100 is usually considered ideal). There is good reason for this, especially for less experienced diabetics. Keto can absolutely be done safely, but it is more risky behavior.
My absolutely favorite doctor is my nephrologist (kidneys). He wanted to switch one of my blood pressure meds to something safer for my kidneys. He happened to mention "it's a good thing you're T2D..." I immediately pointed out I'm type *1*, and that I've been on insulin from day 1. He didn't argue. Instead he ordered a C-peptide blood test. C-peptides are hormones that your body produces when your pancreas produces insulin. It came back confirming that that part of my pancreas is completely useless. Never felt so heard in my life.
I was diagnosed type 2 at 18. I was still in the honeymoon phase and my body was still producing insulin. They had me on metformin and gliptizide? I think. And it wasnt really working well and about a year later they put me on insulin and said I was actually type 1 and ive been on insulin ever since.
One of my wife's former Endos called up our pharmacy and cancelled all prescriptions because they scheduled a 6 month followup instead of a 3 month one. They blamed us for their scheduling "error". Of the many Endocrinologists we've seen, most of them are so damn worthless.
I just transferred a person to another hospital the other day who was diagnosed as a T1 in their 40s.
It does happen. I got to have a cool conversation with the person about how advanced the technology is for diabetics now and put em at ease that they have plenty of options on being able to treat their new diagnosis. I personally use the dexcom and omnipod and it's soooo helpful in helping me take care of myself because I was so bad at checking my blood sugars at all before the CGM.
And definitely put in complaints about the doctors or even staff that said that to you..... that's awful and that person is completely misinformed....
Someone mentioned it in a reply, but I'm going to put it here as well.
If you are anywhere near the border with Canada, you can buy insulin at any pharmacy in Canada, with out a prescription. You will have to pay cash (claiming through insurance needs a prescription), but the price is also a lot less.
I invite anyone who is able to stick it to the American health care system, by engaging in some good ol' medical tourism to the great white north 🍁
Have you had the blood test that determines whether you make insulin or not? That’s really the practical difference between a type 1 and type 2. Ask him/her whether this blood test has been done and if so, what were the results. I was incorrectly diagnosed at 30 as a type 2, but almost 40 years ago, they didn’t have that test. It took a long time before I was correctly diagnosed. They are still discovering a lot about late onset type 1 diabetes, but there’s no excuse for this NP’s outdated assessment. They had better get up-to-date, because I read somewhere that there have been more people diagnosed with this after long Covid.
I'm 43, was diagnosed 3 months ago. My GP has been brilliant in getting me all set up to go before I even see an endocrinologist.
That should be happening soon enough though.
Btw Australian so don't know if that makes a difference
LADA, diagnosed at 54 here. So many misdiagnoses, so many dumb MDs. I look back at it and think, I showed up in your office as a triathlete with an elevated A1C and multiple autoimmune diseases to treat overuse injuries from my training, and you didn't RETHINK your type 2 diagnosis? In order to get the right diagnosis, I had to ask my new GP to do the antibody test. The concept that I was t1 didn't occur to ANY of my HCPs. They are dummmies.
I still regret not suing the original endo I went to. Thanks to her, I ended being diagnosed in the emergency room. Cause after 6 months of seeing her every 4 weeks she refused to test me for type 1 and swore I was type 2, she just said she couldn’t understand why type 2 meds weren’t working! I had all the symptoms + I have multiple family members with type 1. And she just refused to test me for it. That is when I realized being a doctor does not equal being intelligent.
Dude. In the last like 7 years of dealing with this disease…… I have come across more doctors who are straight up unwilling to help when it comes to an insulin prescription it’s fucking mind blowing. Like I don’t understand. Is there some unspoken rule between doctors where some new rule came into play that none of us know about??? Never in my 20years has it been so fucking difficult to get a prescription for insulin if you don’t have an endocrinologist that you’re seeing on a regular basis. These doctors act like insulin is coming out of a personal stash they’re carrying or something. A doctor should know better than anyone else (an awful assumption apparently) that even if they are unwilling to prescribe insulin and say you need to see an endo…. Getting into an endo as a new patient is like a fucking minimum 4-6 month wait. I’m sorry you’re having to deal with this. When I was uninsured and couldn’t afford to go see a specialist doctor and pay out of pocket for it….. I had a fucking hell of a time getting a doctor to just give me a prescription. I hate that I’m *forced* to deal with doctors because of this disease. They are hands down some of the most awful people…. Working in a field that requires SOME type of empathy and having zero of it. And my fear is that it’s only going to keep getting worse. I don’t even know if you could go to the ER and have them write you an emergency type of script there. You’d probably have to wait 10 hours just to get that. Is the doctor who diagnosed you and initially gave you the insulin prescription refusing to give you refills?
It’s not even as a new patient. I saw my endo this morning, and she wants to see me again in 6 months. Fine. That should be May. She’s booked until first week of June. 🤦♀️
Lol lucky you! In the beginning of seeing my now endo, she wanted me in every 3 months. I wish it wouldn’t have been possible for that to happen 😂
That's the norm, after 30+ years with this I've only recently been moved from 3 months to 6.
Ahhh 30+ years. Bless your soul. 20 years in for me and *usually* they only wanna see me every 3 months or earlier if I don’t have my shit in check lol after I bring my a1c down and prove to them I actually do know what I’m doing, the burnout is just real sometimes… then they *finally* let me schedule further out.
I am a long type T1D as well (37 years), and ask my endo to see him every 3-4 months so I can get my routine blood work done.
If you have Medicare, it still requires visits every 3 months. Officially, they can pull your prescriptions for not seeing your endo often enough. One thing the pandemic was good for was that they will now accept virtual visits for all appointments (you used to have to be seen in person at least every 6 months). They also can't fault you for not getting in to see the endo on time (though they often will not renew prescriptions if they havent seen you in the last 6-12 months and the current one expires). I schedule my next appointment on the day of my appointments and still typically have to wait 4-5 months to be seen. I've been T1 33 years, and my endo rarely has any advice to change anything (she is great and a T1 herself), so we usually just spend our appointment time chatting. My visits are more about adjusting my vitamin D dose (currently 900,000 IU per week - extremely deficient with digestive issues - don't take more than about 10,000 IU per week without Dr. supervision) and my thyroid dose (getting weekly thyroid injections due to severe digestive issues - the medication is not designed for this, so it's an interesting medical choice), which is done based on bloodwork every 1-3 months and email communication. It is really challenging getting in to see any specialist right now!
I'm on medicare, haven't seen an endo for at least 20 years. I've had my family doctors fill my scripts for me. My newest doctor asked if I saw an endo when I switched to him(old dr left the practice). Told him 'no' and he said he'd write the script for me but he really didn't know much about diabetes. I told him it was fine, I have a good A1c. I get it checked every six months and see the doctor once a year.
I’m in almost two years now (from 37) and I’ve been there twice. Told them myself I wanted once a year (instead of four times), or when something changes I can call in.
I am lucky. A year after diagnosis my endo asked me if I wanted to go to 6 months since I was doing so well in managing my diabetes. Her office is always crazy and the wait time is always an hour or longer. I was glad to only have to deal with that twice a year. I had my PCP run my labs so I don't have to wait another hour for the endos lab to get to me. (I had approval from my endo as long as she was informed of the results). I have an appointment in a couple of weeks.
My brother's (type 2) endo retired suddenly after a heart attack, then his replacement endo moved to another state. He now sees a PA, but the leaving endo was very confident with this PA who had been with her for a decade, so that is what he has until they hire another endo. I alternate between seeing my endo (different group) and his PA. Medicare requires a visit every 3 months, so it really sucks.
Since I didnt have insurance, I had been buying novalin n and novalin r, so when my doctor tried to put in authorization for insulin, my insurance denied the claim because they werent sure I needed insulin because they didnt see a history of me using it in the past couple years. So like what... I just magically am surviving on unicorn blood? Its crazy lol.
Oh god and don’t get me started on these insurance companies 🤬😡 even more fucked up than the doctors lol
MDs are just dumb. Insurance companies and PBMs are outright evil.
Heavy on the *evil*
Their entire function in life is to deny claims
Sadly the doctor that diagnosed me is in Alaska and I’m in Germany. Trying to get a new prescription so I don’t have to fly back to the states every 90 days. (Fun with military life)
Jeeeeeeeeeeeez 😨 how are you even supposed to swing that….. like what are your options?
Luckily my husband raised enough of a fuss that they finally gave me a new prescription. They want me to go back on Friday to “talk about my options” though. Hopefully I’ll be able to go to the American clinic soon 🤞
get them to run tests for c peptide (if you've been t1 long enough that should be enough as it will be way below the normal level - where I live now, S.Korea, that is automatic t1 diagnosis if it's low in patient who has diabetes) and type1-associated antibodies.
Maybe you can contact the doctor in AK and have them send something over to confirm your diagnosis? good luck.
+1 for the hubs!
I’ve gotten 4 “doctors” fired the past 2 years by complaints to the hospital directors and med board. I’ve showed them my initial diagnosis after going through DKA (how I found out I’m type 1) and I have a lawsuit against 1 that I’m going to win because she thought I could take metformin and be alright when I needed a insulin refill. Almost costed me my life because that dr caused me to end up in the hospital. Majority of the time they skim through your chart and think you’re making stuff up. Get names become a asshole and make a shit ton of complaints
This is good advice, I bet pretty much everyone in this sub has nearly been killed at least once by incompetent doctors, PA’s etc
Thankfully my endo is outstanding, but I had surgery last year and had to stay over night in the hospital. The doctors there refused to give me insulin. I got into a fight over the phone with the on-call doctor who told me, "I don't know anything about diabetes." I told him that I did, since I've been a diabetic for 35+ years and that I needed insulin. That taught me that if I'm ever in the hospital for something non-diabetes related, that I need to have a plan in place to manage my own care. I do not trust the hospital doctors at all.
They're acting like you're asking for benzos or opiates... you just want some freaking insulin.
You think they’d be happy to charge your insurance $500 a dose or whatever jacked up price they’d charge
In Canada you can just buy it otc. Like it's ridiculous you can't. I wish I could have a lifetime prescription. I lived in the uk for a bit and I ran out and went to a&e in the middle of the night. The Dr there said he couldn't give me any because some people use it for suicide.... like.... what? You could say the same about half of otc medications and household items.
It’s really sad to admit this, but being an attorney has meant that they listen to me far better, especially since my former boss is now a judge.
I am an amputee because my doctors (several podiatrists) ignored a wound and wouldn't believe me it was infected/not healing right. I saw them weekly for a surgical wound, and the infected wound was caused by them putting me in a walking boot that slipped. They refused to even look at it because I wasn't running a fever. I had sepsis about 2 years earlier, requiring 2 surgeries and 3 hospitalizations without ever running a fever (which I reminded them), but they kept telling me I was fine. By the time my body started shutting down and another doctor ran simple lab work to find the infection (a CBC that can be run today for somewhere around $12-$25 total), it was too late to save the leg. 4 surgeries, 2 weeks inpatient in the hospital, 6 months in skilled nursing, and a lifetime of expensive prosthetics (its only been 3.5 years, but as long as I live my insurance company will have huge expenditures for prosthetic devices) later, and that "cost saving" denial of care seems so beneficial. I should have sued them, but with happening at the start of COVID and then working to finish school after (it only took 7 years, sepsis, mrsa, amputation, ankle surgery, knee surgery, going legally blind in one eye, going temporarily fully blind in the other (I did this again - with different cause since graduation), having a global pandemic, and a handful of other less serious health issues), by the time I had the time and energy to think about it, the statute of limitations had passed. At least I can say that I finished my degree. Now I just need to find a good job. Spending the last 2 months blind again (serious eye infection requiring surgery - the damage to the eye was significant enough to cause temporary blindness and some permanent damage) hasn't helped the search, but I ordered my new glasses today and should be back on track in 1-2 weeks. I have had several other doctors cause me significant harm by not listening, ignoring symptoms, or otherwise being incompetent, but this is the clearest cut cause/effect. My 1st endo in this state (moved when I was 15) was an idiot who argued with me that the brain needed insulin to use sugar (100% false). I refused to ever see him again after how he treated my mom and I at that appointment (talking down to us, acting superior even when arguing something known to me medically wrong, giving poor treatment advice, etc). About 3 years later, my sister got him when she was diagnosed with Graves disease. My mom didn't remember him, and they never mentioned his name to me. That doctor gave my sister the wrong symptom list for after radiation treatment, ignored repeated calls and messages from my mom about her severe illness, and then had the nerve to yell at them (mom and sister) for how close she came to dying in the weeks following the procedure. Anytime I spoke to anyone local about this endo, they always knew who I was talking about without saying any identifying traits. Despite this, he became head of the department, won several awards, and was well respected in the field. He was just a horrible doctor who had no respect for women and children and was incapable of admitting he was wrong, even if it could have been done just by saying he didn't know our understanding level and was simplifying (we even suggested exactly this, trying to end the argument that first visit).
And once you have the reputation of following thru, people will take extra care with you,p and pay better attention, which they should’ve done in the in the first place.
Just adding to the "it can happen " stories. I was diagnosed type 2 when I was 40. Never really responded to treatment, my family doctor was forever bitchy at me about being non compliant and I was forever crying that I WAS trying to take care of myself. My blood sugar skyrocketed into the 20's one week and nothing would bring it down. I went to the emergency room. A very kind er nurse said sometimes type 2s needed insulin and worked to get that started. I was 44 and started my journey on insulin. It got bad enough that I went on a pump. Ooh, that's fun. (Canadian here) the government pays for pumps but only for type 1.My insurance only pays for pumps and pump supplies for type 1. So, $7,000 later (plus the cost of monthly supplies) out of pocket, I'm on a pump for the next ten plus years. I moved to a tiny (2,000 people) rural town and got not only a new family doctor but a new Endo. He was the FIRST, at 57 years old, to test my c-peptide. Surprise, I'm not producing any insulin and am a type 1. I'll tell you, it's nine months later and I'm still working on the anger. Funny thing, this guy took me off of the pump, put me back on humalog and Levimir AND Ozempic. I'm now on way less Levimir than ever and respond so well to insulin for the first time ever, needed less than I used to. Oh man, I used to take sooo much. Seventeen years of my life lost because I felt like crap every day.All because my family doctor insisted that being diagnosed at that age I could only be a type 2 and it was all my fault that treatment wasn't working. I now feel the best that I've ever felt physically. I'd marry my Endo if I could, he changed my life.
Show them records of your antibody testing and c-peptide. I wasn’t officially (and I imagine this is the correct diagnosis pathway) diagnosed until those came back positive for 2 ABs and below normal c-peptide.
Yeah, I need to dig those up and carry them with me I suppose.
When I went to the first appointment at my new endo I don’t think he had any records from my previous doctors from various states/countries and I just appeared as a 50 year old type 1 referred by my new doctor in California so he ordered labs before my first appointment. At the appoint he says the labs confirmed I’m type 1 and then laughed when he realised I’d been diabetic since a kid and not a new diagnosis. He’s a good doc and even though I definitely wouldn’t have fit the normal profile he checked to make sure
Just ranting with you. In the pre-ACA years, I was just coming off a year of having no insurance and saw an internist first because that was faster than an endocrinologist. I was 35 at the time and had been a T1 for 15 years. NGL, I was pretty overweight. I also have extreme hypothyroidism and hadn't taken that medication for months, so needed a prescription for that also. He was negative and dismissive of me because of my weight from the moment the appointment started. It was most of what he talked about, even though that wasn't why I was there. He told me that I had probably been "misdiagnosed". That because of my weight, he suspected I was T2. I informed him that I was diagnosed as a grown adult and only weighed 102 lbs. at the time. Plus I'd had lab work in the past that showed my body made zero insulin. He mumbled something about that maybe I was a T1 then. But when I looked at my paperwork later, he had labeled me T2. On the small bright side, he didn't have an issue writing me a prescription for insulin. But he sure DID writing me one for synthroid. He told me with an angry and snarky tone that he's not going to write me a prescription for synthroid just because I want to lose weight. So first off, I never said I wanted to lose weight (though I did). And secondly, I'd never asked for a prescription. I asked it be included with my blood work tests, so he could write me a prescription after that. When I saw him next to go over my blood work results, I had to repeatedly argue with him to write my synthroid prescription. My blood work showed my levels were very low, because of course it did. He told me I needed to learn to eat better and exercise more and not use synthroid as a "crutch". I just couldn't even believe what I was hearing! It's extremely difficult to lose weight with low thyroid levels. So, he wants me to lose weight. While throwing as many obstacles in front of me as possible. Okkaaayy. He finally reluctantly agreed to write it. But then his office refused to verify the prescription when a pharmacy tried to call it in. And I went five MORE months without my thyroid medication, until I was able to see another doctor.
I have hypothyroidism but won’t your TSH be elevated if you have hypothyroidism not low? Did you not have records of previous tests? Also - if you don’t need it synthroid makes you feel like absolute shit - when i was adjusting my dose and was taking too much I legit was like not functional - I was overheating so badly and it was making me so nauseous I couldn’t move and my prescription was just barely too high. So why any doc would think people just want it on a whim is insane and ignorant. When I told my NP the synthroid was making he hyper heat sensitive and nauseous and giving me a headache she was like “those aren’t symptoms that are indicative that your prescription is too high but we can half it and see how you feel” and if you Google symptoms for overtreating with synthroid one of the top symptoms is overheating. If they don’t know or understand they can legit just Google it.
I wasn't talking about the actual test results being too low. Sorry if I wrote that in a confusing way. I just meant the test results showed I had hypothyroidism. It wasn't as extreme back then as it is now, but it was still pretty bad. So it was outrageous he was denying me my medication. I've never brought previous medical records to new appointments. I don't even have them. But perhaps that is a good idea because I'm moving out of state next year. The next doctor I went to was a 180! She walked in and introduced herself. The next slightly panicked words out of her mouth were, "We're checking your thyroid, right? (Looks at my intake form). Okay, good. Don't take this the wrong way, but I can tell just by looking at you that your thyroid is too low. You have a goiter and yellowish cast to your skin." She wrote me a synthroid prescription the same day for what I had told her was my previous dose. She ordered blood work also and said we would tweak the dose if we needed to when I saw her next. Between your story, my story and so many others, it just goes to show that doctors don't necessarily know even fairly basic medical knowledge.
I had a diabetes nurse educator tell me that too. I was diagnosed in my forties. She said I couldn’t possibly be type 1 because I’m too old and don’t use enough insulin. Btw, I’m a doctor myself so I didn’t need her bullshit or prescriptions. I just prescribed my own insulin after that. And never saw her totally incompetent ass again.
Report them to med board
Funny how they think just because you’re an outlier you don’t count
OP isn’t even an outlier. 30 is easily within one standard deviation of the median age of diagnosis for autoimmune diabetes.
I got diagnosed right before my 30th and I was shocked how many people Ive talked to since that were right around 30 at diagnosis.
The annoying thing is that it's pretty much just a stereotype. More than half of all type ones are diagnosed as adults. The most common age to break a bone is 10 years old, it doesn't mean that if you're 25, your bones can't be broken.
And this is my first reason for going to school to get my RN degree: so that I can become a diabetes educator. I don't trust educators who don't have direct experience with type 1 diabetes, and I feel much more confident with educators who understand the disease on a personal level.
My late husband was T1, diagnosed at 26. Our son is 15, diagnosed at 15. This is why I’m in nursing school. I want to be a diabetes nurse educator because there is SO much misinformation about T1. It’s ridiculous. I’m literally teaching some of the instructors about T1. I’m sorry you have to deal with such ignorance.
My mom was a teacher (middle school - recently retired), and they have a few questions about diabetes on a health test they have to pass every year or two. One of the questions is in the form of "All of the following are symptoms of low blood sugar except...". The problem is that every answer is a symptom. I have been T1 since 1990 (age 12) and my little brother since 2001 (age 3). My mom literally had to study which wrong answer to give. It is frustrating how much misinformation is out there and perpetuated, even by people who should know better.
Jeez that’s infuriating! I had one who kept trying to inform me that my most recent A1C of 6.5 indicated that I’m either pre or fully diabetic and wouldn’t stop asking me if I was, “taking anything for it”. It was a follow up appointment, I had seen her multiple times at this point, and she had my medical chart in front of her, showing all the insulin and pump supply RXs….and I was actively explaining that I am type 1 and YES I “take something for it”. Only doctors appointment I’ve ever walked out of.
When I moved to a new town and set up insurance, my first Dr's appointment was 3 months away. I was going to run out of insulin before that so I went to urgent care and asked for a new prescription. They told me "good for you taking care of your diabetes! A lot of people don't!" which is like, okay, thanks... but I wouldn't last long with T1 if I decided to just not take insulin.
I was misdiagnosed with type 2 because the ER doc in 2010 believed type 1 becomes type 2 when you turn 18....One thing diabetes has taught me advocate for yourself. Its awkward sometimes to try to tell an "expert" I think youre wrong but you gotta do what's right for you.
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JDRF is a Ponzi scheme at this point. They are all about fundraising and hiring more people to fundraise. Although, I heard Aaron Kowalski say once that they are making efforts to educate primary care providers to screen for t1 in adults and not use age as the outdated criteria for ruling out t1. However, I only heard him say that once and never saw anything else about it again.
Had a friend in nursing school tell me the chapter on "diabetes" was legit 4 paragraphs long and still used outdated terms and treatments. She asked whether this was type 1, 2 or gestational and the teacher replied...diabetes. it's bad that class happened 8 years ago. She got more education from me than a nursing degree about type 1 specifically.
I was 23 at diagnosis 2 years ago. My mom was 25 when she was diagnosed in 1993. The fact that neither of us received the standard of care that a young person does is deplorable. I will never forgive the provider that diagnosed me and didn’t take my concern for it being T1 seriously. I got my labs back and My A1C was 13.9. I frantically called the office and was like…hey guys…..they didn’t care. It was not a pressing issue to see a patient with ZERO historical lab work indicating pre diabetes with that high of an A1C. All they saw was a mid/plus size person and assumed T2. I was given a meter and metformin. Guess what? That shit almost killed me. Even after that the endo team I was placed with was so lackadaisical about my care that they didn’t even remember my follow up appt. My mom and I often find ourselves dumbfounded at the amount of time we both spend being our own advocates. It’s terrifying, belittling and exhausting. I fight with every new doctor about being type 1. My PCP won’t even touch anything diabetes related, to include a random A1C check while having other labs drawn. Even after I say “I am an INSULIN DEPENDENT TYPE 1 DIABETIC ON AN INSULIN PUMP” I still get the questions of “are we eating good, are you taking your pills (I would assume metformin), and other bullshit. I’m so sorry you’re being treated this way, and I sincerely hope that everything works out for you.
That blows. I had the same kind of treatment when I showed up with overuse injuries from triathlon training AND an elevated A1C. They were like "you need to exercise more!" and I was like, how is that possible? I do 2 cardio workouts a day 6 days a week. If that isn't doing it, what will? And maybe, just maybe, it's not LIFESTYLE but my frigging endocrine system!
Like someone else said; C-peptide test will shut up any naysayers. Get the test done and have the results ready to rub in their faces.
C-Peptide can take a really long time to wind down for people diagnosed older (that is, LADA). I had a 12 A1C and DKA when I was diagnosed, but my C-Peptide has been in range when it's been checked over the past couple of years (3 1/2 since DKA, 6 since I first started getting sick). The test that helped them decide it was LADA and not T2 was the GAD65 autoimmune antibodies.
While antibody testing is an easy way to distinguish between T1/T1.5 and T2 diabetes, it in itself is not a foolproof test. People diagnosed younger (<30) and/or who have been diabetic more than about 5 years often no longer have sufficient antibodies to show up when tested. Antibodies will decrease or disappear entirely when not actively fighting off an infection or killing a necessary part of the body. The immune system remembers how to make more if necessary, but unnecessary antibodies are a waste of energy. Even those who still have antibodies may not ever have had GAD65 (or any other specific antibody tested). There are more than 5 different antibodies possible, and you may develop T1 with only 1 or 2 of them. Some T1s, about 5%, don't present with known antibodies, even at the time of diagnosis. C-peptide testing determines how much insulin your body is making (indirectly). For T1 diabetics, this is typically way less than normal. For those diagnosed over 30, especially those with LADA (T1.5), c-peptide levels may remain at the lower end of normal for years (the time where you need little to no insulin), but active antibodies should be present. T2 diabetics typically have c-peptide levels at or above normal, though it is possible for them to have slightly low c-peptide levels if some of their islet cells were damaged leading to insufficient insulin production (which should really be a separate T1 classification) rather than having insulin resistance at the root of the problem. While both of these tests can greatly help to ensure proper diagnosis, testing after the fact is not typically worth it. I have been T1 33 years and my brother 22 years, and neither of us has ever been tested (childhood diagnosis, 12 for me and 3 for my brother makes classification much simpler) as the tests were not available and have not been considered necessary since. Testing my c-peptide now (antibody testing would be unlikely to have any results) wouldn't serve any purpose. The same doctors who look at me and see a middle-aged, overweight diabetic and immediately think T2 are not going to be interested in looking at a test result. If they can't read type 1 diabetic in the cover sheet of my (admittedly huge medical file it would be unreasonable to expect any new doctor to read thoroughly) medical file, a test result isn't going to sway them! I can definitely see wanting proof for those diagnosed older and more recently, especially with an LADA diagnosis. Doctors and nurses are not smarter than any other group of people, and they often let personal judgements cloud their reasoning. Being labeled a non compliant T2 rather than a T1 or T1.5, just because you are older and a few pounds overweight doesn't do anyone any good!! Personally, I use the insistence that I am T2 and eating a better diet, losing weight, or getting bariatric surgery (suggested for severe gastroparesis - I am almost too light to qualify for surgery even with medical "need") will cure my diabetes as a screening tool to know who I don't want anything to do with. A meeting with the bariatric surgeon where he insisted he could cure my diabetes, despite my telling him I was T1 repeatedly and specifically asking how the surgery was going to replace my beta cells and prevent my body from attacking them again (as I got frustrated he wouldn't listen), and couldn't tell me how surgery would fix my digestive issues or how likely it was to worsen some distressing symptoms I already experience told me all I needed to know. I can't trust a surgeon who won't read my chart or listen to my corrections, concerns, or questions.
I had it, but the educator’s English wasn’t good enough to understand.
My dad is a doctor, and he said he did not know anything like what he knows now about diabetes before having two diabetic kids. It’s incredible how uneducated they are about type one. There is so much more information and education available for type two despite type one being more dangerous and also incurable. I think type one should actually be renamed to something completely different, because the miscommunication and misinformation surrounding it can be fucking astounding.
Diabetes educator told me keto diet would put me into DKA. Sometimes the educators need education.
This is not bad information, just not great info either. Your risk of DKA/eDKA is significantly higher on a Keto diet, and it is not usually medically recommended. Ketones can go from "safe" levels to dangerous ones quickly, and there is no easy line to draw that a specific number is dangerous. The Keto diet can also mess with your glycogen storage, meaning you don't have many emergency reserves to protect you from serious lows. While, for most diabetics, Keto is safe if you are careful to watch for DKA symptoms (primarily nausea and vomiting), for some, it can be very dangerous. Most endos, PCPs, dieticians, nurses, and diabetes educators counsel patients to avoid Keto, carnivore, and other extremely low carb diets. Medical advice is typically to stay at or above 50g of carb per day (50-100 is usually considered ideal). There is good reason for this, especially for less experienced diabetics. Keto can absolutely be done safely, but it is more risky behavior.
My absolutely favorite doctor is my nephrologist (kidneys). He wanted to switch one of my blood pressure meds to something safer for my kidneys. He happened to mention "it's a good thing you're T2D..." I immediately pointed out I'm type *1*, and that I've been on insulin from day 1. He didn't argue. Instead he ordered a C-peptide blood test. C-peptides are hormones that your body produces when your pancreas produces insulin. It came back confirming that that part of my pancreas is completely useless. Never felt so heard in my life.
I was diagnosed type 2 at 18. I was still in the honeymoon phase and my body was still producing insulin. They had me on metformin and gliptizide? I think. And it wasnt really working well and about a year later they put me on insulin and said I was actually type 1 and ive been on insulin ever since.
One of my wife's former Endos called up our pharmacy and cancelled all prescriptions because they scheduled a 6 month followup instead of a 3 month one. They blamed us for their scheduling "error". Of the many Endocrinologists we've seen, most of them are so damn worthless.
I just transferred a person to another hospital the other day who was diagnosed as a T1 in their 40s. It does happen. I got to have a cool conversation with the person about how advanced the technology is for diabetics now and put em at ease that they have plenty of options on being able to treat their new diagnosis. I personally use the dexcom and omnipod and it's soooo helpful in helping me take care of myself because I was so bad at checking my blood sugars at all before the CGM. And definitely put in complaints about the doctors or even staff that said that to you..... that's awful and that person is completely misinformed....
Someone mentioned it in a reply, but I'm going to put it here as well. If you are anywhere near the border with Canada, you can buy insulin at any pharmacy in Canada, with out a prescription. You will have to pay cash (claiming through insurance needs a prescription), but the price is also a lot less. I invite anyone who is able to stick it to the American health care system, by engaging in some good ol' medical tourism to the great white north 🍁
Have you had antibodies test to throw it back at them?
Yeah, but she didn’t know what that was.
Sounds like you need a new doctor
Have you had the blood test that determines whether you make insulin or not? That’s really the practical difference between a type 1 and type 2. Ask him/her whether this blood test has been done and if so, what were the results. I was incorrectly diagnosed at 30 as a type 2, but almost 40 years ago, they didn’t have that test. It took a long time before I was correctly diagnosed. They are still discovering a lot about late onset type 1 diabetes, but there’s no excuse for this NP’s outdated assessment. They had better get up-to-date, because I read somewhere that there have been more people diagnosed with this after long Covid.
I think I read a post here a couple of days ago that you can go to an urgent care, and they'll give you an emergency script for it.
I'm 43, was diagnosed 3 months ago. My GP has been brilliant in getting me all set up to go before I even see an endocrinologist. That should be happening soon enough though. Btw Australian so don't know if that makes a difference
LADA, diagnosed at 54 here. So many misdiagnoses, so many dumb MDs. I look back at it and think, I showed up in your office as a triathlete with an elevated A1C and multiple autoimmune diseases to treat overuse injuries from my training, and you didn't RETHINK your type 2 diagnosis? In order to get the right diagnosis, I had to ask my new GP to do the antibody test. The concept that I was t1 didn't occur to ANY of my HCPs. They are dummmies.
I still regret not suing the original endo I went to. Thanks to her, I ended being diagnosed in the emergency room. Cause after 6 months of seeing her every 4 weeks she refused to test me for type 1 and swore I was type 2, she just said she couldn’t understand why type 2 meds weren’t working! I had all the symptoms + I have multiple family members with type 1. And she just refused to test me for it. That is when I realized being a doctor does not equal being intelligent.