Sarah Howard
Sarah Howard has worked in the diabetes research field ever since she was diagnosed with T1D while in college in May 2013. Since then, she has worked for various diabetes organizations, focusing on research, advocacy, and community-building efforts for people with T1D and their loved ones. Sarah is currently the Senior Marketing Manager at T1D Exchange.
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Have you ever used any therapies in addition to insulin delivered under the skin? For example, inhalable insulin, type 2 diabetes drugs, etc. Tell us about your experience in the comments! Cancel reply
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Afrezza inhalable insulin is a must-try, ask your endocrinologist about it. The company that makes it is MannKind. It’s a huge game-changer to help me decrease my high blood sugars quicker than injectable insulin.
I used Jardiance for about 9 months. Saw no improvement to A1C or weight loss so discontinued use.
Trulicity
I used Victoza as part of a study for a few months and my A1C & TIR improved, because I had no appetite. It’s easy to stay in control when you skip lunch! I lost weight, but suffered from nausea and lethargy. If this was available for T1 patients I don’t think I would use it again.
When I was diagnosed in 1968, they did not initially start me on insulin. Instead they put me on a series of type two diabetes drugs for the first year during the honeymoon period. That did not go so well and I began insulin therapy a year later. I assume they do not use that approach anymore.
I was initially put on Metformin because I had been misdiagnosed as T2. When I was correctly diagnosed with LADA, I started insulin.
For the bulk of my 59+ yrs. w/T1 I have been on a lower carbohydrate diet which has optimized my post meal blood sugar levels. 5 years ago I started using Afrezza. It has safely allowed me to enjoy more carbohydrates and actually has improved my HbA1c by .5 and I am working less now and enjoying better diabetes blood sugar balance remaining in the normal blood sugar range 92%-97% of the time.
SGLT2 for improved balance of my blood sugars and heart protection.
I could say the identical words of Mary Dexter. I was 49 years of age and misdiagnosed with type 2 diabetes by a GP and put on metformin to no avail. An endocrinologist said “You don’t look like a type 2 diabetic” and I have been on insulin ever since. Metforman made me feel sick and I couldn’t eat anything; sugars going high. I have LADA too.
My endo said if she was a betting woman, she would bet I was not Type 2. Tests proved her right.
I’m currently on metformin and GLP 1 for insulin resistance. Initially, I lost 50 pounds and decreased insulin by 1/2.
I was in an inhaled insulin trial for a year. Once I got past The first couple of weeks of it making me cough, it was okay, pretty accurate. I actually prefer MDI, I don’t like the inhaler feeling. I said then it is probably really good for people who would avoid better control by being resistant to injections.
Have taken metformin for a long time. Sugars would skyrocket during the night (100+ points) so my endo thought that metformin would take care of it. Thankfully, it has worked well.
I take Afrezza inhaled insulin. I’ve been using it with Tresiba and the Dexcom since September 2019. Love the combo! My last A1C was 5.6 with 90% time in range (65-160).
When I was on MDI and struggling with Dawn Phenomenon my endo put me on Metformin. Getting a pump was the real fix for DP (higher basal rate starting in the wee hours) but I’ve stayed on it since it helps with some insulin resistance I have (like a lot of T1s). More recently I’ve been taking Jardiance, which has had a huge effect in attenuating my high and low excursions.
I’m in the group I presume called LADA although I never heard the term from any of my primaries or Endos. I was 5’6’ and 110 lbs when diagnosed and put on glucophage I believe back in 2000. It did nothing. I told my primary (no Endo at the time) that it wasn’t working and I needed an Endo because I felt I needed insulin. He told me he could prescribe it. I said I wanted a specialist (why would I want him when he misdiagnosed me and I had to diagnose myself?). Once I got on insulin with an Endo and an educator, I put on weight again. They all suspected I was anorexic. It was a rough couple of years. Now, I am much better and much healthier. I prefer insulin to taking pills. I am grateful to have it.
Same story for me. You can’t control glucose levels with food and metformin, unless you starve yourself to death. In the four months I waited for an endo appointment, I went down to 96 lbs. Also at 5’6″.
I briefly used SGLT2 inhibitor. It lowered my blood sugars, but I began to suffer UTIs and odd tingling sensations in my legs. The inhibitor is supposed to be specific for only 1 transporter, but the manufacturer’s data shows it has greater activity against the one, but it is not specific.
Type 1…47 years….used Jardiance for a couple of years back. Worked great then started spilling ketones… endo took me off immediately.
I used oral rezolin. Now withdrawn. I worked like a charm for me. But you know that silly gastro cancer in 10% of the users was a tough outcome
I was on Victoza for about 3-4 yrs. My end switched to Trulicity about 3 yrs. ago. Been on it since.
T1 x 21 years. Metforman did nothing for weight nor A1C. On Victoza for 3 years while working for Novo Nordisk until it put me in the hospital with acute pancreatitis. I say stick to the insulin.
I take metformin. In addition my therapy includes daily exercise- walking, biking, resistance training, and I do most yard work and upkeep on my home and for a few other people.
I used Symlin for a few years. The nausea was annoying. I stopped when insurance refused to cover it. Now I use insulin in a pump, Jardiance, metformin, and Acarbose.
One doctor put me on Metformin. It didn’t help lower my insulin needs enough to warrant another medication on board. Also, when I first met this doctor she said I looked more like a T2 because of my weight and I think she was trying to put me on type 2 meds because she thought I was lying about my T1 diagnosis. SMH.
Yes, for many years I had to “prove” I was Type I to each new doctor. Always the same result after labs. Don’t produce insulin.
Some years ago I saw a new endo who then sent me to talk to the NP because she felt a pump would be good for me. The NP took one look at me (overweight) and said “Who told you that you were Type 1?”. She ran antibody and c-peptide tests which showed I was most definitely Type 1.
I was overweight at diagnosis, age 19, and the endo in the hospital kept telling me over and over how it wasn’t my fault and that nothing but insulin would work for me.
I have been using the inhalable Afrezza for the past four years. I have had my best glucose control since switching and would not go back to injectable insulin. Within the first three months of switching, my A1C went from 7.9 to 6.4. I have never been above 6.9 in the past four years.
Yes, I used symlin for about 5 years and liked it. It took a while to figure out the exact amount and time I need to add insulin (1 1/2 hours later I need the rest of the required insulin). I only stopped to go on the Tandem CIQ which need to make a algorithm for me in normal cases.
Tried Metformin for a couple of years but it didn’t seem to be doing anything except giving me stomach upset. Got some samples of Afrezza from my end and I loved it but my insurance won’t cover it and it’s too cost prohibitive for me to pay out of pocket.
Mary Coleman, contact the company, MANNKIND, they can help with coverage.
I use Victoza for insulin resistance. It works for me.
As a 10 year old, two years after dx , my MD had me stop insulin and try an oral drug still under development. He had previously been involved in that research. After less than two weeks, I was very ill and went back to insulin injections. The drug never made it to market.
Inhaled insulin, Tresiba, and Dexcom was the game changer Combo for me. Never thought a fixed dose insulin would allow the control I’ve experienced. Tightest control I’ve ever had. W/ the least amount of time spend managing my T1D. my best, most consistent A1c results in last 3yrs (5.7-6.3) and less glucose variability (100-160)
Because I was 45 at time of diagnosis, I was thought to be Type II. So I took oral meds for a little while until they didn’t work. C-reactive protein showed that I produce no insulin, and I went on insulin therapy.
I was diagnosed type 2 to begin with because I was an adult. I was given glucaphage. It did nothing thing for me. I was on that for quite a while and my bs was always high. I weighed between 115-119 down from 135. They put me on insulin eventually but it was probably 6-9 months before they did. Once on insulin I was able to get my bg into a good range.
T1D, currently on pump and use inhaled Afrezza for mealtime. But afrezza onset/fall off is so quick also usually have to give small bolus when sugars start to rise after Afrezza did it’s part. Very happy with how fast it starts to work.
I have T1D for almost 60 years. My endo put me on Symlin 10 years ago to help with satiety and weight gain from stress eating. It worked for satiety to control stress eating and lower BGs, but it involved way too much math as I was frequently having to adjust insulin delivery from a Medtronic pump and was having frequent episodes of hypoglycemia.
Switched to a small daily dose of Victoza about 4 years ago and it has worked like a charm for me ever since. My endo had me start on a very low dose (0.2 mg) with slow titration up as tolerated to avoid any unpleasant side effects. It took me almost a full year to reach 0.6 mg (which is the manufacturer’s recommended starting dose) and I stayed there for quite a awhile. I have been on 0.8 mg for the past 18 months. My experience with it feels like something in my gut hormones that was offline is plugged back in and working again.
I was 30yrs old and was diagnosed as type 2 after my yearly check up showing elevated BG. Some unremembered medication I took for 3 months did nothing.
I had to convince my GP that I understood the necessity of taking medications and was not missing any before being brought to the hospital for two days and started with insulin.
I was originally misdiagnosed as Ty2D because I was 36. I kept getting sicker and my blood sugar did not come down. Saw an Endocrinologist who did tests and said I was t1d and did not make any insulin.
I’ve been using Afrezza for a little over 6 months. Like it for the “let’s eat now” moments and for bringing down a high. I also use MDI, as the smallest Afrezza = 2 – 2.5 regular insulin units….so not good for those “little” corrections we occasionally need to make.
Don’t know of this counts. I was originally diagnosed TYPE 2 (was the perfect TYPE 2: ate and drank everything, workaholic) and was long was I lost weight if was fine (lost 105lbs over 2 1/2 years) than the went haywire.
My did refused to consider insulin after 3 years for alone, counts m medical risks for TYPE 2 “out of control,” and although the bloodwork said I had the antibodies placed me in the trials “just to see.” NPH with initially STARLIX, the GLUCOPHAGE (have brand for metformin), finally told to gain weight than in shots.
They admitted meds did nothing.
1956 dx T1. In early 2000s was additionally dx with T2. Was prescribed T2 oral med which helped stabilized bg. Med was withdrawn from market. Dr. did not prescribe a diff oral med.
I tried inhalable insulin and while I loved how quickly it worked, even the lowest dose could knock me down to a low. My correction ratio for insulin is 1 to 100 so I think that has something to do with it.
In response to my blood sugars, my Dr suggested I try Victoria. I began to have diarrhea after the first dose. I stopped the Victoria within a few days, but the diarrhea continued for 6 months.
I use Afreeza. It spoils me because of it’s amazing fast action and short duration. I hope I never have to do without it.
I was in a test program using Inhalable Insulin. Persons with Insulin pumps were asked by our Endo. to participate because we were good at keeping data. The test was a bust, although we kept our pumps’ on for Basel insulin, the inhaled insulin didn’t not control our Glucose levels, because the inhaled insulin dosages were limited. We all had lung test before and after. I did have some shortness of breath after, but it passed.
Inhalable insulin and I did not get along as it was not effective and hard to take. Tried a T2 drug and it block my intestines up. Ugh
After relocating to Florida from the northeast due to retirement and not being able to find an endocrinologist nearby, I had my Primary Care Doctor handle my Type 1 diabetes. (I was dx’d Type 1 in 1976 while in my late 20’s and relocated in 2005.) As my prior good control slipped and my A1c edged into the 7’s, my PCP first prescribed Avandia in addition to the Lantus and Humalog I was taking. That caused severe hypoglycemic episodes. I stopped taking Avandia on my own after several weeks. When the then instructed me to increase my Lantus dose AND not take my Humalog unless my BG was 250 mg/dl or greater before meals, I was increasingly doubtful of his approach. While on vacation in Idaho in 2010, I had a bad hypo requiring my husband to administer glucagon when he was unable to wake me in the morning. Although the glucagon helped, he drove me to the local ER where they admitted me after fearing I’d had a stroke.
The many tests showed no stroke and “just” a severe hypoglycemic reaction. When we returned home after cutting our vacation short and this PCP advised me to continue doing what he’d advised, I knew I needed to change doctors. He was treating me as a Type 2 and had no idea how to treat a Type 1 nor that he should be referring me to someone who did. I self-referred to an endocrinologist who was 75 minutes away. The endo immediately reduced my daily Lantus dose by 25% and re-educated me about carb to insulin ratios. He ordered the first C-peptide test I’d ever had and the results clearly showed that I no longer produced any insulin. Rather than insulin resistance which is what the PCP had determined was the problem, I learned that I had a high insulin sensitivity factor at 1:120. Within 6 months, under his care, I transitioned from MDI to an insulin pump and have been able to maintain my A1c in the mid to low 6’s for the past 10 years. Had I stayed with that PCP, I doubt I would be alive today. I continue to learn as much as I can about my diabetes and how it affects me. Knowledge is power and we must be our own advocates.