I understand that scientific studies must be completed so that it can become more than anecdotal evidence. These studies need to be published in reputable academic journals, showing the researchers have followed the proper protocols to get to the conclusion.
But for this latest study, I could have saved everyone a lot of time and money.
This starkly titled study was published on February 3, 2021 in ADA’s Diabetes Care: Risks of Psychiatric Disorders and Suicide Attempts in Children and Adolescents With Type 1 Diabetes: A Population-Based Cohort Study.
A large study in Sweden assessed children diagnosed with T1 diabetes and their healthy siblings over a longitudinal study (and also combined a comparison to the general population). Upshot? Here it is:
Children with type 1 diabetes are at high risk of psychiatric disorders, which seems to be a consequence of the disease rather than due to a common familial etiology. The results support recommendations on comprehensive mental health surveillance in children with type 1 diabetes, especially in recently diagnosed children.
In their research, the investigators found the risk for psychiatric morbidity tripled in the first six months of diagnosis. Even long-term, it was still twice as high for the entire observation period compared to the control subjects. I could have told them that.
For a child, a Type 1 diabetes diagnosis is traumatic. (Yes, it’s traumatic for the whole family. Let’s focus on the kid right now and what she/he thinks.) You go from being fine (or your concept of fine) to being told that you have an incurable disease that you can, at best, manage well enough to avoid major complications. Of course, you’ll have to be diligent, stab yourself with needles and lancets, and despite your best efforts, you may still get complications. You tell me if that would send you to your happy place…
I was diagnosed in 1983. Less than 24 hours after my Type 1 diabetes (it was called juvenile diabetes back then) was confirmed, I was in Joslin Clinic’s inpatient Diabetes Treatment Unit where I spent 11 days being indoctrinated. I was too busy learning about insulin and exchanges and sick day rules to really think about what the long-term impact on my life would be.
When it overwhelmed me, it wasn’t in the first six months. In my experience, my medical team and my family worked hard to prepare me for the long slog ahead to the best of their abilities. I know that I was loved and that I was educated in my disease. It took a year and a half, away from my family for an extended period of time on my own.
After the “novelty” of this diagnosis wore off, my head went to very dark places. I would have gone spelunking because I was a teenage girl, but diabetes gave me exclusive entry to depths that most kids don’t reach. Instead of crying over a crush, I was crying over a shortened life span and all those complications that everyone’s grandmother had. Guilt over blood sugars and A1Cs and feeling judged had me questioning my self-worth. My inability to get my blood glucose levels under control (thank you, puberty) for very long played a part in how I felt day-to-day. How the hell was I going to do this every day for the rest of my life?
We Can’t Do This Alone, But We Are Alone
I’ve never kept my bouts of depression a secret. It is liberating to talk about the things that scare you, as long as you know you feel safe. I have had some incredible medical professionals who have led me out of the dark places. I have some wonderful fellow T1 talkers who shine the light on the strong connection between T1 and depression. We can’t do this alone. It’s exhausting. And terrifying.
You can have the best cheerleaders on your team, but they’re not going to win the game for you. (That’s as close to a sports metaphor as you’ll get on this blog. Go team!)
Parents go through their own private hells when a child is diagnosed and I encourage any family to get counseling to talk through the tough times. (Think about the siblings who can become jealous because the T1 kid gets all the attention. I’m grateful that my brother wasn’t like that - at least that I know about.)
But in the end, it’s us. We are alone. The Type 1 child, no matter how protected, loved, educated, watched over… when we close our eyes at night, we think. And dream. And wonder. Sometimes, we travel to dark places. Some of us don’t want to come back. And that’s when it’s crucial that we have people who help us.
Researchers needed to do the studies to tell the medical community what we’ve been telling them for years. It’s not all in our heads. We are at risk simply because we have diabetes. We need a holistic medical team for every T1 child (and dare I say it, T1 adult): someone to teach us how to use insulin and count carbs and someone to teach us how to live our lives with diabetes in a healthy way - body and mind.
If you (or someone you know with Type 1 diabetes, especially those who are newly diagnosed) need help, please… talk with your medical team about your thoughts. There are options and support groups and professionals… For your children who have been diagnosed, please understand that no matter how much love you show them, they may need outside help that you can’t give. That’s OK. Really, it is.
The last three A1Cs.
My CDE asked a simple question:
“What do we need to do?”
I love that she thinks she can help. That she can do something. But I know better.
I’m a creeper. And I know why I’m creeping up, but I’ve been ignoring it.
I’m ignoring the beeps and buzzes of my Dexcom. John will hear it go off - in the other room, because I can ignore it more effectively if it’s not near me - and he’ll say: “Your diabetes is going off.” I’ll nod, say: “It’s high.” or “It’s low.”
Actually look at it? Well…
Take action on it? Well…
Sometimes it takes someone else to point out that you’re creeping. After I went to my latest appointment, John told me that he’s noticing that I’m not doing anything after I see my blood glucose level on a screen.
“Why? What’s stopping you from doing this when you know it will help you?”
The lows are scaring the hell out of me, because I’m not feeling them until they are so bad that my heart is pounding and I’m in panic mode. The highs are safety. And when they’re too high for too long, my action is to SWAG to bring it down, but never so much that I’ll be at 100. I want to feel safe. And I also know that I don’t have to be as vigilant if I know I’m high . And that’s dangerous.
“What do we need to do?”
It’s what I need to do.
Take action. Take care. Listen to the technology that I do have to help. Do it.
I’m not burned out, but I’m in that headspace where my own diabetes becomes a distant hum of a gnat I can’t swat, so I let it buzz.
My CDE and I upped my basal rate, looking at the graphs that were in front of us, and I’m hoping that the highs will stop being so high - and I’ll work on listening to the Dexcom.
It takes listening to others sometimes to make a change happen. Listening to your medical team, your family and friends, and the DOC. (Because, DOC, knowing that I am not the only one who does this makes me feel not so alone.)
And then doing it.
So, thank you to my CDE and John and the DOC for being the “we”.
I’m done creeping for now.
You are an adult with T1 diabetes living in the United States. You have no health insurance - or worse, health insurance with such a high deductible that everything you need is out of your own pocket. This is today’s reality for so many people.
Want to know how much having diabetes and paying out of pocket will cost? How little you can pay? Read on…
This is the bare minimum standard of care, which means I’m not trying to NOT use test strips or avoid tests or health care visits.
When I say “bare minimum”, it means that there are no insulin pumps, no continuous glucose monitors, no conveniences, no latest on the market medications, and forget the latest insulin analogues. The insulin you’ll be using is the same formulation that I started with in 1983 - Regular and NPH (except you get recombinant DNA and I got a mix of beef and pork).
You should take this as a “If I am to follow what the ADA says I need to do at the very least, this is how much it would cost me for my diabetes.”
This does NOT take into consideration if you have to see additional health care professionals or have additional tests if it’s been determined that you have complications.
I am using the American Diabetes Association’s Standards of Care 2014 as the guiding document.
Most of the items listed can be purchased at Wal-Mart. Why Wal-Mart? Because ReliOn items, sold at Wal-Mart, are the cheapest on the market. I can’t vouch for their accuracy, efficacy, or their overall comfort and convenience. With the exception of the ReliOn glucose tabs that I purchased in an emergency once, I’ve never used these items. But here goes…
The least expensive insulin that you can purchase in the United States is at Wal-Mart. Remember that these particular insulins are not the latest or fastest insulins on the market. You will need to work with your health care professional to create your dosage plan, because if you are switching from different insulins (Humalog, Novalog, or Apridra for fast-acting or Lantus, Levemir for slower-acting/basal insulins) your dosage, timing, and when these drugs peak will be completely different.
The ReliOn brand insulin is manufactured by NovoNordisk, just so you know.
That being said, once your have your dosage, let’s pretend calculate:
If you take a total of 30 units per day (hey, adjust for more or less, this is a hypothetical Type 1 adult weighing 60kg), you will take about 900 units per month. As there are 1,000 units per vial, you’ll need at a minimum 2 vials per month.
- $24.88 ReliOn®/Novolin® Human Insulin N
- $24.88 ReliOn®/Novolin® Human Insulin R
- $24.88 ReliOn®/Novolin® Human Insulin 70/30
Total cost per month: $49.76
Total cost per year: $597.12
- $12.58 ReliOn Insulin Syringes (100 syringes in each box)
If you use the ReliOn insulin, you’ll most likely take two shots per day (minimum, remember?), so that’s 60 syringes per month. You can only buy them a box at a time.
Total cost per month: $12.58
Total cost per year: $100.64 (8 boxes, for 720 syringes each year, hoping that every single one works properly)
Blood Glucose Monitoring
You need 1 meter. Here you go:
- $16.24 - Walmart.com ReliOn Prime Blood Glucose Monitoring System (One time purchase. Don’t lose it, forget it somewhere, or need more than one, right, because that never happens.)
Total cost (let’s just call it per year, OK?): $16.24
Now, this is where it begins to get tricky. You need strips and lancets.
According to the ADA, for Type 1s, self-monitoring of blood glucose (SMBG) is key to diabetes management. They recommend 6 - 8 times per day as a minimum of blood glucose testing. When you read the Standard of Care document, they state:
“…prior to meals and snacks, occasionally postprandially, at bedtime, prior to exercise, when they suspect low blood glucose, after treating low blood glucose until they are normal glycemic, and prior to critical tasks such as driving.”
That is waaayyyy more than 6 times per day, but I’m going with the bare minimum.
So, 6x/day = 180 strips per month. Wal-Mart sells their ReliOn strips in counts of 50, so you’ll need 4 boxes per month.
- $9.00 - Walmart.com ReliOn Blood Glucose Test Strips 50ct
Total cost per month: $36.00
Total cost per year: $432.00
Now, you have to have a lancing device to get that blood.
- $5.84 - Walmart.com ReliOn Lancing Device (with 10 lancets!) Again, here’s hoping you don’t lose it or need more than one per year.)
Total cost per year: $5.84
You are supposed to use a new, sterile lancet for each blood glucose check. (Ahem.) Following the guidelines, it would be 6 new lancets each day for a total of 180 lancets per month. Buy the bigger box and you’ll save a penny per lancet.
- $5.84 - Walmart.com ReliOn 30g Ultra Thin Lancets 210ct ($0.03 each)
- $3.94 Walmart.com ReliOn 33g Ultra Thin Lancets 100ct ($0.04 each)
Total cost per month: $5.84
Total cost per year: $64.24 ( you only have to buy 11 boxes if you buy the larger box each month).
You hope that you’ll never be sick, under stress, or have a blood glucose over 240 mg/dl, because then you could possibly have ketones. But you need to have the ketone strips on hand, just in case. These do expire, so at a minimum, you’ll need one vial of these per year.
- $6.64 - Walmart.com ReliOn Ketone Test Strips, 50 ct
Total Cost per year: $6.64
If you are following the guidelines, you’ll need to use an alcohol swab for every time you use a syringe or a lancet.
- $3.74 ReliOn Alcohol Swabs, 400ct
You’ll use a whopping 2,920 of these each year. Minimum.
Total Cost per year: $29.92
Hypoglycemia? According to Diabetes Care:
Individuals with type 1 diabetes average 43 symptomatic episodes annually; insulin-treated individuals… As for severe hypoglycemic episodes, patients with type 1 diabetes experience up to two episodes annually…The risk increases with a history of hypoglycemia and an increased number of years of insulin treatment.
So, figure on one hypo per week. (You and I both know there are more, but again, we’re bare boning this.)
Hypoglycemia treatment options? Well, you could use glucose tabs or gels; they are the most effective in treating hypoglycemia. Still need something, so you can purchase juice or candy that can treat hypoglycemic reactions for less, but won’t be as effective or as portable or convenient.
- $3.98 50 ct. ReliOn Glucose Tablets (with an average of 4 tablets for each episode, but you may have to buy something on the fly so this cost may be higher)
Total cost per month (average): $3.98
Total cost per year (average): $47.76 (not counting extra items purchased if you don’t care the glucose tabs with you at all times)
Standard of Care states:
Type 1s should have their A1C tested twice per year if you are under 7.0% and quarterly if not meeting goals. The least expensive option is… yes, you guessed it: Wal-Mart.
- $8.98 ReliOn A1c Test - must mail test to lab to get results.
Total Cost per year: $17.96 - $35.92
Influenza vaccine annually (remember, this is Standard of Care recommendations) You can try and get a free one at a health fair or county health department
Total Cost per year: free to $25.00, depending on where you go without insurance.
Now, often you’ll have to see a health care provider to get this test, but there are some places that you can walk in and get this done without insurance or a prescription. I chose Any Lab Test Now for pricing (obviously this can vary around the country).
Fasting lipid panel annually, regardless of history. If you’re on a statin, then more frequently.
Total Cost per year: $49.00 (minimum)
Microalbumin test to measure albumin excretion (levels will determine your kidney function)
Total Cost per year: $49.00 (minimum)
Health Care Visits
Total cost per year for a single non-specialist: $95 to $215 (depending on location, according to this 2014 article)
One visit (minimum) for a dilated comprehensive eye exam. (This cost referenced is for a standard eye exam. It may be more based on dilation.) Remember if the health care provider finds evidence of retinopathy, additional visits, treatment, and tests will be needed.
Total cost per year for an eye exam: $50 to $114 (depending on location, according to this website)
This is the bare minimum cost annually without insurance (or out of pocket if you have horrible insurance options, not counting the amount you are paying for premiums), if you are not eligible to use free services or patient assistance programs.
Remember The Ground Rules
This amount assumes you are not using an insulin pump, a CGM, any brand name products besides ReliOn, the latest analogues or medications, or using any resources that may cost extra. You are essentially using the same technology that I started with over 30 years ago when I became Type 1, except the blood glucose testing is less expensive and results are faster.
That amount assumes that you are eating a healthy diet (oh, wait… it costs more to eat healthy, so factor that in…).
That amount assumes you are without ANY complications from diabetes or have ANY comorbidities.
That amount assumes you do not take a statin or an ACE inhibitor (recommended by ADA for many patients).
That amount assumes you do not take ANY other medications - or gosh, need a Glucagon Low Blood Sugar Emergency Kit.
That amount assumes you do not have periodontal disease, heart disease, depression, hypothyroidism (which is the most common autoimmune disorder associated with T1 - up to 30% of us have it), kidney disease, neuropathy, frozen shoulder or trigger fingers, foot issues…
That amount assumes you will not be admitted to the ER, the hospital, need specialists (nephrologists, podiatrists, orthopedists, ophthalmologists, cardiologists, gastroenterologists) or have to take time off of work due to diabetes.
If you do need assistance, there are resources available for U.S. individuals with diabetes that meet certain criteria.
Are you getting what I’m saying here?
This is not a blueprint for how to manage your diabetes.
This is showing you the cheapest, but often substandard treatments, for diabetes. How many people with diabetes must make decisions that impact our life due to the cost of living with this disease? TOO MANY.
I haven’t even started on the emotional cost. The psychological cost. The cost on families, coworkers, employers, friends…
It’s not how little we can pay…
I’ve figured that out: $1561.36 per year, give or take thousands of dollars.
It’s about how much we can’t afford to lose, which is much, much more.
I asked for your ideas and your input and your help, and you commented. You made a difference.
The less than stellar appointment I had with the surgeon last week over my trigger finger had been roiling around in my brain and I was confused. Was I wrong in wanting to have a conversation? Was I incorrect in thinking that I shouldn’t have to have three fingers done if only one is triggering? Why don’t they sell Halloween Fun Size candy all year? (Wait. You didn’t answer that. I’m still asking.)
I read your comments and I talked with John… both actions got me to make a second opinion appointment, which I had today. The new surgeon was courteous, looked at my chart before speaking, and talked WITH me, not at me.
One finger will get de-triggered next week. One. Not three. One. (His eyebrow went up when I told him that the other surgeon wanted to do three at once and he had a micro expression that screamed out: “The other surgeon must need to make a payment on his Maserati.”)
On my way from the appointment with the new surgeon, I called the other doctor’s office and gave my “No, thanks” to their surgery option.
So, this is a quick thanks to you (and no, thanks) to the first surgeon. This is why I love the diabetes online community. You help others by sharing your experiences and your opinions. (And my finger still hurts, so I can’t type much more.)
Out of all the Schoolhouse Rock videos, this is my favorite. (I’m Just A Bill and Elbow Room are runners up.)
There is something magical about the number three. And that song (and the cover done by Blind Melon, too.)
But today, three is not a magic number. It’s the number of trigger finger releases I am supposed to have in a few weeks.
I say supposed to have, because like any empowered patient, I’m going to to do my research about having three fingers done on one hand when only one is actively triggering (although my pinky and my middle finger - hey!). I’ll ask around, look up information in medical journals and perhaps even get a second opinion by another hand surgeon. Why, you ask?
My Appointment Was Not What I Expected
The appointment itself was interesting, because if I had met the surgeon a few years ago, it would have been a different conversation. Here’s how it went (and my thoughts as it happened).
My appointment was for 12:10pm. Brought into a room by Jason with a M.A. on his name tag.
::What does M.A. stand for in this office? Master of Arts? I don’t think so.::
“So, why are you being seen today?”
::Does ANYONE read the reams of paperwork they make me fill out? Anyone? Bueller?::
I give him the lowdown.
“How do you know that it’s trigger finger?”
::Again, paperwork. Four previous trigger finger release surgeries.::
“You’ll get an x-ray and then the doctor will be in to see you.”
From the time I saw Jason and got two X-rays on my hand, it was another 40 minutes before I saw the doctor. He breezes in with a guy behind him wheeling a cart with a computer on it. His own personal stenographer for electronic health records.
He knows I have trigger finger. There are no questions. I didn’t get an opening statement in.
Because of my friends, Drs. Sean and Tamara Oser, who present an incredible session at Friends for Life, I know this statistic:
In a well-known study of the survey phase, Beckman and Frankel found that physicians prevented patients from completing an opening statement 77% of the time. Those who interrupted their patients did so in a mean time of 18 seconds.
He beat this statistic to death.
“Hi, I’m Dr. X (not his real name, although that would be neat, right?). So, let’s see your hand.”
He examines it. Palpitates the area where it hurts. I wince. He keeps asking me to open and close it, telling me to make a fist.
::I can’t make a fist, dude. My finger won’t do that anymore. If it did, I wouldn’t be here.::
He pokes at it again, while I explain that I’ve had trigger release done before, but not here and not for this finger.
“O.K., so I’m going to give you a cortisone shot.”
::He didn’t even give me options. Ask me if I’ve ever had a cortisone shot in the FOUR other fingers I’ve had trigger finger. Explain that I could choose: physical therapy, cortisone injections, percutaneous release or open surgery release. Four options. I know which one would work for me, for most Type 1 diabetics, but HE DIDN’T GIVE ME OPTIONS.::
“Dr. X, I’m not doing a cortisone shot. It’s been proven and published that it’s not a successful treatment option for individuals like me with Type 1 diabetes. Surgery is almost always done in these cases following a cortisone shot.”
He looks at me, then turns to the steno guy, who is now looking confused.
“I’ve done the research. I am an e-patient.”
He looks at me again. He says:
“I’ve done over 10,000 release surgeries. Most people with diabetes do end up with surgery.”
The steno guy is wide-eyed. Dr. X nods to me, then tells the silent interloper with the computer:
“We’re going to do surgery.”
He turns back to me, starts palpitating my palm again and asks if there is any pain when he presses here or here.
::Yes and yes.::
“You know that you’re already showing signs of triggering in your pinky and it’s only a matter of time before you’ll have to have the pinky and the middle finger done. So, let’s go ahead and do all three while we’re in there doing the ring finger.”
::I am so over this trigger finger thing. Whatever.::
After this brief conversation, he leaves and I schedule surgery, but not before he popped his head in and told me that I would probably want to schedule it at one surgery center over the other he uses, because the anesthesia company he uses does not accept insurance at the one closest to my house.
::In my next life, I’m coming back as an anesthesiologist.::
If this had been a few years ago, I would have blindly accepted the cortisone shot, then floundered for weeks dealing with super high good sugars and staggering amounts of insulin to bring it down, eventually ending up in his office again, this time to schedule surgery.
I have done a lot of research, talked with my friends in the DOC, and had this done four times already, I didn’t go in blind. I just came out angry.
Angry that I wasn’t offered a choice. Angry that I had to state that I was going to have the option he didn’t initially present to me. And then I am angry because I am not even sure I should have three fingers released when I know only one needs to be done right now.
So, for those of you who have had trigger finger release surgery, has anyone had THREE fingers done at once? What would you do?
And maybe the other question I have is this: Is it wrong to expect doctors to have a conversation with you about options, because right now, I’m as confused as the poor steno guy?