I decided that since it became controversial I would keep that conversation private
(IPhone)
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Well, yes, my intent is to prove to the many people who are out there wondering if they should
a) die
or
b) just use the cheap stuff and get on with their life like it’s “not that big of a deal” that they should absolutely do the latter.
Pretty sure he just said exactly the same thing I’ve been saying. Glad his words spoke to you more clearly than mine.
He documented his 30 day challenge on Youtube: https://www.youtube.com/watch?v=5ytDBivBNTA
It’s a little painful to watch. He seems to oscillate between low and high all the time. Yet on the 29th day, he says that you can manage just fine on this insulin without changing your lifestyle- even though earlier in the video he shows that he shot up to 325 after lunch because he can’t handle more than 35 grams of carbs at a time. On day 22, he says that he just hit his highest % of time in range according to the Clarity Report at 55%- I would not call this managing just fine. Also, he used a Dexcom throughout his experiment. By the time most people made it through all their analog insulins, I doubt they’d have any cgm transmitters left.
I wouldn’t really say his words spoke to me. I feel like most his videos show basically what I’d expect to occur on this insulin. I didn’t watch all of them though. He does state his intent in his opening statement (see Day 1): “My hypothesis is that I will be able to maintain good control of my diabetes within a variance of .25 on my overall Hga1c.” However, he makes other statements later that align more with what you’re saying.
Anyway, if your biggest deterrent from making your experiment public is me, then I promise to not comment on the experiment. Based on your stated intentions, I doubt you’ll have the desired impact if you keep your experiment private.
I do think most people would find 4-5 shots of NPH/day to be a new and interesting idea. As @MM2 said, it’d also be really interesting to see someone try to undertake the experiment without using a Dex. I think that was a huge asset in Rob Howe’s experiment.
From my perspective, whether or not using this insulin is a “big deal” really depends on how much you need to change your life to work around the insulin to get to a point where you’re consistently staying in range (at least 70% of the time) without severe highs and lows.
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I will go back and listen to his video again, but my impression was that he used the Dexcom to track what was really going on, but dosed with the blood glucose meter.
I think “just fine” comes back to interpretation. @Sam clarified “just fine” in his context meant “die or survive.” Others interpreted that as “can do just as good.”
The guy who did the video said he could come within a couple 10ths of his starting A1C and was on track to do that at the end of the 30 days. That would fit within @Sam’s definition.
Personally, I would rather rise to 7 than to die.
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I didn’t realize he wasn’t using the alarms. I found that a bit confusing because he never really states that outright (in the few videos I watched). Also, the urgent low alarm always goes off. He does say here that he used 250 test strips though: https://beyondtype1.org/treating-type-1-diabetes-without-insurance-overthecountert1dchallenge/
So I suppose he was attempting to not use the cgm as much as possible probably. He clearly was able to review the report at the end of each day though.
Anyway, I’m not going to argue about it. As I said, I’m happy to not comment if I’m the problem with making this public.
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I don’t think it is you, specifically. I feel this way on many posts, sometimes. But your input and opinions are valued by everyone here.
The demonstration value would be greatly reduced without a cgm. I normally don’t use a cgm unless there is a particular challenge I’m trying to sort out… that said switching to a totally different insulin regimen and trying to document the experience I think the cgm would add value…
I think he proved that, for a reasonably well-controlled PWD, it is possible to live with NPH and Regular, at fairly significant cost to your life. I think none of us expected anything different: we all knew it would take a large toll on your everyday life, your eating habits, your schedules etc.
Imho it is good to know you can survive on it, without too much loss in A1c, but with large losses in time-in-range. We now know (well, we really kinda knew it before) the price to pay in quality of life is big. All of this is good info.
@Sam, I am not sure it is worth your going through this. Rob did it already. This is grueling and painful. It will clearly impact your A1c, and, worse, your time-in-range + SD, which some now consider more important than the A1c for complications. We already know the answer. I would advise passing on the experiment: you’d only duplicate it, at some risk to your health and with large quality-of-life sacrifices.
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I am confident I could do it with minimal quality of life issues or adverse health risks. Only I get to judge my quality of life. I personally think that many of the MOST “modern” regimens many people in the doc are living with look far worse than this
I do still plan to learn to proficiently use R and NPH simply because I’d like to retire soon and live with minimal expenses. That is a higher priority to me than analog insulins and should we go without medical insurance, which we may chose to do, these options would be far more affordable
Also considering just learning to cover basal with R… a shot every 3 hours or so might do it, not sure but it’s worth experimenting with
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Okay, so here’s what’s going on with me: I was diagnosed a little less than a year ago. They thought it was Type 2, but none of the oral medications worked, and my doctor finally seized upon it being LADA after three months of treatment. We moved over to low doses of insulin, and things were mostly okay… difficult and confusing but I could sort of handle it. Then last September, it was discovered that I had a tumor the size of a grapefruit that was rapidly growing and needed to be removed immediately. While I was in surgery, I was given some sort of steroid. I had a Rheumatoid Arthritis flare-up during the week post-surgery, and my rheumatologist prescribed fairly high dose of prednisone for ten days (another steroid). Suddenly, my insulin use had to quadruple to account for the changes my body was experiencing, and that number has continued to stay the same since then. So now I’m on 140 units of NPH twice a day and 24 units of Humalog with each meal.
When I had insurance, they kept refusing to fill the higher doses of insulin, sometimes taking up to a week to get authorization and filling them. Then I’d run out about 31 days later for basal and 26 days for Humalog, and no matter how early I tried to start the process, I was told that the pharmacy couldn’t submit for a refill before 30 days and then it would be another week after that when someone would finally agree to send over the authorizatio from the county insurance for the high amounts of insulin I’m on. I never had the option of “building up a stockpile” and I was only on insurance and receiving insulin therapy for six months, three months of which were on the higher dosages.
In January, I lost my insurance from the county and couldn’t requalify because my only housing option was two streets out of the county limits. Since I am a full-time grad student in a professional program that involves direct work with clients, living in my car again isn’t an option if I’m going to hold things together even marginally well enough to finish the three semesters I have left. My tuition is paid for by scholarships and I don’t qualify for student loans due a long and complicated series of events.
So, I live outside of the county that could help me get insurance to cover the six medical conditions I have. What about employer insurance? Well, I work as a contractor helping adults with intellectual disabilities learn life skills. It’s part time and I’m a contractor, so no help there. With all of my medical issues, I can’t finish this degree and work a full-time job. I don’t even think I can work a full-time job anymore, even if I didn’t have school because my health is shot.
“Why don’t you apply for disability?” – Great question! I have applied and gotten the standard denial. It usually takes about two years or more for the average person on disability to actually be approved. In the meantime, working actually hurts your case. But I can’t survive for two years with no income. I have no family that can help. I have nowhere to live without my part-time job. The best thing possible for my future is to finish this degree, become a licensed counselor, and be able to work in that position – which I will be able to tailor so that my medical needs are accommodated.
“Why don’t you just get on Medicaid??” – My state DIDN’T accept the Medicaid expansion. Without children or being a recipient of Social Security Disabilty Income, I do not qualify, no matter how little money I make. If I were receiving SSDI, I could apply for Medicaid, but the waitlist there is close to 28 months in Texas. So, it would be, on average, two years to qualify for SSDI, and then another two years and four months to get off the waitlist for Medicaid. That doesn’t help me now.
So I’ve run out of insulin. I’ve been off insulin for two weeks, consistently running in the 400s. I feel awful. I’m having constant migraines.
“Why don’t you just go buy insulin from Walmart?” Because three weeks ago. I was informed that the hours for my position at work had somehow gone past what my two client’s Medicaid would pay for until it rolls over at the beginning of April. I would only be paid for the hours Medcaid said my clients had left, which turned out to be three hours for my last paycheck that I received two weeks ago. I have $3.27 in my bank account. No credit cards. No income for at least another month. I have no idea how I will feed myself or have gas to get to and from school. I can’t afford $200 for eight vials of NPH and however much for however many vials I’d need of R.
I’ve been trying since the middle of February to apply for LillyCares, and my doctor’s office still will not give me his stupid license expiration date that the forms require. I’ve been fighting with them over email about whether or not they’re willing to provide that information. Once I send in the application, it’s 2-3 weeks to hear back on denial/approval and then however long it takes my doctor to send them a prescription and for them to ship it to his office.
So, yeah. I feel so lost and alone and terrified. Absolutely terrified. I am just trying not to die. I’m not even 30. I’m also really frustrated-- I’ve seen so many people near the top of this post say things like “Make sure you have a stockpile of insulin for if this happens” or “Make sure you have an emergency fund to cover your insulin.” I’ve had diabetes for less than a year. Suddenly, I don’t have insurance or an income and there was nothing I could have done to change that-- except living on the streets in my car so I could qualify for insurance, at the cost of not being able to continue working my job or finishing this degree. But this is Texas-- no way to even keep insulin at safe temperatures if you are living on the streets in summer.
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@Blue, this is something that must be addressed right away.
I can ship you some NPH right away. I don’t have Humalog, but I could ship you some Novolog cartridges if you have get a pen that could use them—can you get them for free from your doctor?
You cannot live without insulin. This is extremely serious. Even a few days may be too much.
For the medium term, I think you might need to look at NPH+R, because it is so much cheaper than Humalog. But I can’t give you much advice on the daily use of R, we only use it for sickness etc. @elver, you wrote a post a little while ago on R? Do you think you might be able to right a “How to” thread on using NPH+R, when switching from Analogs?
I can also ship you some R if you want. You can PM me and discuss shipping details etc. A
Lillycares: I could call your doctor’s office and discuss directly with them for you if you want me to try. But why don’t you go there in person and ask directly? Also, you MUST go there and tell them you are out of insulin and can’t get more, and ask them if they have free samples, or where you can get free samples. Many endocrinologist clinics have them.
I think you should also go to your school and talk to them in person, right away, about your being out of insulin and can they help you?
@kmichel, do you have any ideas about how @Blue might be able to get out of her insurance problems?
@Blue, PM me right away and I can try to get some insulin to you shipped today.
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@Blue, I am so sorry that you’re having struggles right now. Do you have a Paypal account? If so, we could possibly send donations your way so that you can get the insulin you need NOW. Unfortunately, your case is EXACTLY what many on this forum understand with no uncertainty…losing a job/insurance is fraught with difficulties and, unless you’re semi-wealthy already, even purchasing the minimum necessary items to LIVE are exceptionally difficult.
I hope that you’ve reached out and taken @Michel up on his offer also. No one should die because they cannot afford the medicines that they need and the fact that you are in this predicament speaks volumes about “this great country”. I’m sure there are many of us that have read this post this morning that are livid with our current health system even more than we were before
Do you have family/friends who may assist in your time of need? In a pinch, I think most of us have that one true friend or family member who we can always depend on when we need them (and we’re there for them in the same way as well.)
Please keep us updated and let us know how we can assist. If you have a PayPal account, I’m sure you’ll get at least enough money to purchase some initial insulin that may hold you over until April, when your job will allow you to have access to more money, and afford you more time to find a more permanent solution for your insulin needs.
Also, if it comes down to continuing your degree right now, or living, I would choose life any day. Your school should have no problems with you taking a semester off to deal with your imminent issues. I know you want to finish your degree as soon as possible so that it opens more doors for you, but the most pressing issue right now, is your life.
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Hi @Blue. Unfortunately, and of the options I could give you would still have some small cost to you. $5-10 dollars, anyway.
Ask yourself what you are currently spending money on that you could do without: cell phone, internet, cable TV… Or move in with a friend from the University to save money each month.
I do have suggestions for you, but they will require you to do the legwork.
Did you apply for insurance on the new county you are in?
If you will have no work or income for a month, how about taking some hours elsewhere? Supermarket, McD’s, laundry, etc. At least you will have some money.
Call LillyCares. They are the ones who should be calling your doctor’s office for this info. If they won’t, I would switch to NovoNordisk. They have always been helpful, in my experience. They make an NPH and R insulins too. Or contact Sanofi for your bolus needs.
I wold also consider insulin changes, as I am guessing you are not on the optimal regimine. With the newer insulins, the manufacturers offer more help.
Ask your doctor for samples. If he/she prescribes insulin, they can request and get free samples for you. The doctor should be able to refer you to local programs that can help you get your meds.
If your doctor’s office is not helpful, it is time to get another doctor.
You can go to a community health service for help too. To find local health centers, call 1–888–ASK–HRSA (1–888–275–4772) and ask for a directory, or visit http://findahealthcenter.hrsa.gov
You can also find help for prescriptions. The websites below provide links to programs that can help patients determine if they qualify for the different types of assistance and find free or low-cost health care. People can also search these websites for needed diabetes testing supplies by using keywords such as “glucose test strips” or the names of specific diabetes medications.
The Partnership for Prescription Assistance website at www.PPARx.org lists more than 475 programs that help pay for medications. The drug companies that produce medications provide many of these programs. People can find programs and apply for help by calling 1–888–477–2669.
NeedyMeds is a nonprofit group that helps people find programs that help pay for medications. The NeedyMeds website at www.NeedyMeds.org allows the user to search a list of programs by medication or manufacturer name. Some of the forms to apply are online.
RxAssist has a website at www.rxassist.org that provides information about drug company programs, state programs, discount drug cards, copay help, and more.
Rx Outreach is a nonprofit pharmacy that provides affordable medications to people in need. The Rx Outreach website at www.rxoutreach.org provides information about the medications offered and how to apply.
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@Blue - are you still on steroids for RA? That is a rheumatologists first go to, and it always raises Jack for diabetics.
If yes, ask for a prescription for Orencia instead. It is a biologic, but works well. They have a patient assistance program for “commercially insured” people. Give the pharmacy the discount code from GoodRx.com, which acts as the commercial insurance. The Orencia patient card will pay up to $10,000 pet year, so it should cover you for 3-4 months.
It will help reduce your insulin usage over steroids.
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I am happy to, and. I am also willing to donate Humalog
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@Blue The ADA recommends .3 to 1.0 units per KG (2.2 lbs) when starting on R & NPH. It is also suggested that the insulin TDD be divided in half between the two types of insulin (R & NPH, example below). With all the info below, you should be able to determine a conservative dose to begin with. I personally dose NPH with my am meal and PM meal, and bolused with R at every meal. Be super careful using R for corrections, as it will stack with the existing R and NPH in your system and cause unexpected lows. Generally, less is more with R & NPH. For corrections you have to choose whether to ride out the high, treat with exercise, or make food/carb ratio changes to protect yourself.
Regular or Short-acting insulin usually reaches the bloodstream within 30 minutes after injection, peaks anywhere from 2 to 3 hours after injection, and is effective for approximately 3 to 6 hours. Types: Humulin R, Novolin R (Walmart brand R)
Intermediate-acting insulin generally reaches the bloodstream about 2 to 4 hours after injection, peaks 4 to 12 hours later, and is effective for about 12 to 18 hours. Types: NPH (Humulin N, Novolin N, Walmart brand N)
ADA RECOMMENDATIONS
The ADA recommends the following for DM1 patients:
Multidose injections (3-4 a day) of basal and premeal insulin, or insulin pump therapy
Patients should match premeal insulin to carbohydrate intake, premeal blood glucose levels, and anticipated activity
GENERAL DOSING GUIDELINES
Daily dose of insulin
Insulin dosing in DM1 will vary based on patient’s age, weight, and residual pancreatic insulin activity
DM1 patients will typically require a total daily insulin dose of 0.4 - 1.0 units/kg/day
DM1 patients may experience a “honeymoon phase” after starting insulin where lower doses are effective
Determining doses of basal and premeal insulin
After the total daily dose is determined, insulin is typically administered as follows:
Basal insulin - given as half of the total daily dose
Premeal insulin - half of the total daily dose divided into thirds and given before each meal
NOTE: When first starting therapy, it is recommended that the initial basal dose be reduced by 20 - 30% to prevent low blood sugar (hypoglycemia)
Example:
Patient weighs 80kg (176 lbs)
Total daily dose = 80kg X (0.5 units/kg/d) = 40 units per day
Basal insulin = 1/2 X 40 units = 20 units of basal per day*
Premeal Insulin = 1/2 X 40 units = 20 units ÷ 3 = approximately 7 units before each meal
- If patient is just starting therapy, the initial basal dose should be reduced by 20 - 30%. In our example: 20 units X 0.20 = 4 units, so initial basal dose would be 20 - 4 = 16 units
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I’m willing to donate Humalog as well, though I don’t have as big of a stash as some of the others on here. Send me a PM.
I’m sorry you’re going through this @Blue!! If you haven’t already, I heartily encourage you to take up the offers and advice given so far on this site. You’ve come to the right place 
.
Right now your body is still producing some insulin, so you’re able to survive in the 400s without injecting insulin (though this can have long term effects). However, you may eventually lose the rest of your beta cells at any time, and then having access to insulin right away, all the time, will be immediately life/death critical. It must be the absolute highest priority.
I hope that you don’t need to put school on hold!!! But I’d keep this in mind as you evaluate your options.
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Trying to attack this from another direction.
If you can get insurance if you live in the county, why not find housing within the county? Typically a county is a large housing area. One would hope there would be options?
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Wow, this is a bit overwhelming and a lot of information to take in and reply to. I’ll do my best, though!
I will PM you. Thank you.
It’s not a good reason-- I have a lot of self-esteem issues and really hate bothering anyone. At this point, I had sent messages to my doctor’s office twice, and both times he responded that he would have someone call me. I felt as though bothering him or his office staff in person when he already said he would get to it was possibly crossing a line. I don’t want to be “that patient.” I had sent his office a third message last Thursday, which they responded to Friday evening telling me that they don’t give out that kind of information. It’s confusing to me because the doctor had already told me multiple times that someone would call me and give it to me. By the time the nurse responded Friday and said they couldn’t give it to me, the office was already closed for the day. I am going in later this morning with the paperwork and insisting that even if they won’t give it to me, they can write it on the forms, fax all the forms in to LillyCares along with my other documents, and put the original in my file.
He is a GP, not an endo. Unfortunately, I’ve never had an endo. I ran into a problem about a year ago with my previous insurance dropping a (non-diabetes related) particular brand drug off their coverage options entirely and there was no generic. I asked about free samples then, and I was told his office doesn’t work with any pharmaceutical reps and doesn’t use samples.
Yes. That’s exactly why I shared it here. Normally, I might not have, just kind of assuming that everyone knows how difficult it can be to lose insurance or an income stream. But then I saw that some people just didn’t have much experience of what it’s like to live paycheck to paycheck and suddenly have the floor drop out from underneath you not too long after being diagnosed with a lifelong medical condition that requires expensive treatment.
I do. However, I’m pretty new to this community. You guys don’t know me that well, and I would never want anyone to feel as though they have been taken advantage of. I’d prefer running it by a moderator and showing them whatever proof they would want as to my circumstances and medication needs prior to accepting monetary donations. I would be willing to show donation totals and receipts for purchases. Kindness is something to be valued, and that’s a very kind suggestion. I just don’t want to set a precedent that opens anyone up to being taken advantage of in the future.
My living situation is a little weird; I rent a room from my landlady for what is essentially a token rent of $75. I don’t know her that well; she’s doing it as a favor to our old pastor, who has been my therapist for the past four years. He pushed for this as a way to support my education, and it’s frankly cheaper than any other option I had. I just didn’t realize until after I moved and updated my address with the county insurance that this street is a few blocks out of the county lines. Her rules and boundaries for this arrangement include me being enrolled and having my own transportation.
I don’t pay for internet or any kind of internet-based services (Netflix or whatever the latest streaming app is). I haven’t had cable in years. My phone is already on a friend’s family plan, so it’s $10/mo for me. My other expenses have been car maintenance, gas, food, doctor’s visits, and med copays. That last one adds up when you’re routinely filling 21 medications, even at $5 or $7 each. Gas has been a rather large drain on things because my job is 30 miles away, three days a week, and my education is split between two campuses with one about an hour and a half away from the other. I was making things work out at almost $600/mo.
No, and that was because Williamson County indigent insurance only covers three prescriptions per month. It’s a balance between looking at the very long list of my medications and the program rules for most patient assistance programs. A lot of them require you either have no insurance or have insurance that specifically doesn’t cover the medication you are trying to get help with. There aren’t a lot of things that Wilco specifically won’t cover, and if I apply for it, I will become ineligible for assistance with many of the meds I need. Additionally, it doesn’t count as “commercial insurance” for the purposes of most discount cards because of the way it’s funded.
Why is everything so complicated?
You have no idea how much I wish I had realized a few weeks ago that I needed to get on that ASAP. When I heard my position had run out of hours until April 1st, I spoke with my supervisor about getting additional hours approved for my clients. I was assured it was an easy process for Medicaid to approve it and it would go through with only a week or two of red tape. By their reasoning, I would have been retroactively approved for the hours I’d already worked and we’d have additional hours added to their total for the year to cover March. It turns out it’s not an easy process if they don’t want to approve it and I should have realized how long it might take when I knew it was going through the giant bureaucracy that is Medicaid. At this point, I start work again in 11 days, and get paid for the first pay period on April 25th. I can see the light. It’s just a matter of getting all the way there. I will be looking for additional opportunities to work between now and then.
Oh wow I ramble. Someone please shut me up!
Okay, I’m going to split this into a few posts so that I’m not just posting a huge wall of text.
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No, I’ve been off them for a few months now, but there’s no telling when I’ll get put back on them.
Wait, wait, wait?!?! You can DO THAT? I had no idea GoodRx counted as commercial insurance. Holy wow. I knew this forum had smart cookies lurking around, but that’s something I never would have thought to try.
I haven’t used them in a few months. My insulin requirements going absolutely nuts right after I first took them post-D-diagnosis and then being on and off them again and again has made it super confusing as to what is because of the steroids and what is a result of honeymoon-phase ending.
Ain’t that the truth!
@elver Thank you for the information and kind offer. The information is super-useful, and I’m finally far enough along in getting used to what all this stuff means that I understood most of it
Thank you. I’m trying. Everyone here has been really nice. I was pretty frustrated when I was typing out my situation the other day, and it all just kind of came out. I hope I wasn’t rude. I don’t have any diabetic friends in my life, and I tend to lurk most places I visit online.
Also, I had thought that my BG going crazy a few months ago might have been because steroids + end of honeymoon phase (which nobody at my doctor’s office ever told me was a thing. I found out online.). So if I’m still partially in the honeymoon phase, that means that’ll go away at some point too, right? I’m going to need bigger syringes 
I talked about this above, but it boils down to where I’m at now offers the cheapest possible rent. Even if I moved in with a classmate and split costs, it would still be more expensive than where I’m at now.
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