Sarah Howard
Sarah Howard (nee Tackett) has dedicated her career to supporting the T1D community 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 Manager of Marketing at T1D Exchange.
Sarah and her husband live in NYC with their cat Gracie. In her spare time, she enjoys doing comedy, taking dance classes, visiting art museums, and exploring different neighborhoods in NYC.
Before my diagnosis was “changed” to TYPE 1 I was initially on GLUCOPHAGE (brand name for the now generic METFORMIN) for 6 months, just before firing the doc on a variety of meds (status was one of them). However l did quiz my last doc about metformin again because my need for insulin varied so much thinking it may help. He wasn’t for that, the pump’s ability to vary doses seemed to fix that.
I use an insulin pump. an SLGT-2. Acarbose, and Metformin. After 60 years with T1D I developed significant insulin resistance. The T2 drugs let me cut my daily dose by 30-50%. (That helped with weight gain).
In 1956 I had been using Regular U40 beef/pork insulin for a year when my physician substituted an oral T2 medication that he had worked on as a researcher. He had me stop the injections and start the oral medication while I was attending a summer camp for kids with diabetes. It didn’t lower my blood sugar. Within three days I was so ill I had to leave camp ad was taken to the hospital to recover.
Thanks for inviting us to share our experiences! I selected NO, but I have diligently explored complementary approaches including various diets (for example, Mediterranean, plant-based, and paleo); movement and mindfulness (nature, yoga, pilates, somatic movement, gratitude, body scan meditation); and creative expression (writing, art).
I tried something to pacify a friend, and it did nothing. Many people don’t understand that not all diabetics have the same type etc etc.
I tried Afrezza (inhaled insulin) for a bit. It is great for certain situations like highs and for higher carb meals when you need really fast acting insulin as it does work fast. I had too many lows on it and it is hard to dose precisely. I would love to have it on hand for those situations above, but it is expensive and insurance does not cover.
I said yes but it was only briefly. When I first went to the doctor thinking I had diabetes possibly due to symptoms, the doctor agreed but wanted me to get a Glucose test and then see an Endocrinologist. She put me on Glucophage to hold me over. I didn’t do much for me as my sugars were close to 800
I currently take Metformin with my insulin pump. It helps my body absorb the insulin better so I don’t have to take as much.
I once took part in a research study where I had to take a Type 2 medication via insulin pen for about 16 weeks. I don’t remember what it was called.
After diagnosis, even though my sugars were about 100 at bedtime, they would run really high overnight, between 200 to 250 when I woke up. Endo eventually had me start taking metformin after dinner. Have been taking 4 x 500 pills for many years and that fixed the problem.
I used Victoza and Jardiance for some research studies in the past. They were somewhat beneficial for me but with side effects. I didn’t see the research results but since neither drug has become a T1D standard I don’t think they were overly positive.
Because I was finally diagnosed with LADA, a GP here in town tried glucophage with did nothing for me either. LADA is definitely type 1, insulin dependent diabetes and it was endocrinology Drs and NP who have treated me with insulin for the past 23 years. I couldn’t eat without the coverage of insulin, but am still on MDI 4 times a day or more if corrections are needed.
PS. Happy Birthday to the discovery of Insulin 100 years ago. Before then, type 1s withered away without HOPE.
I have tried Symlin which had no effect on A1C nor weight. I was on Victoza off label for a couple years which also had negligible A1C effect and maybe 4 lb weight loss max at the beginning. That therapy was associated with terrible monthly vomiting and diarrhea and even led to a hospitalization for acute pancreatitis. So was it worth it? NO! GLP-1s are great molecules in type 2’s, but type 1 buyer use caution. Perhaps a once-weekly compound (Trulicity or Ozempic) would agree more for AEs, but if they don’t, then the off-time is longer which is their risk.
I took Symlin along with the insulin and pump from 2011-2014. I only stopped when I changed to the Tandem pump with Basal IQ and the CIQ and it needed to set up algorithms. The symlin kept me from going low after meals from too much insulin since I only took about half needed dose. Then in 1 1/2 hours I took the rest. It cut my appetite which I liked although I was never overweight.
Maybe 20 years ago, after I’d been on my first pump for a few years, I was having a difficult time with control so my doctor thought I’d appreciate a break so I tried the inhalable insulin back then (don’t recall what it was) and I HATED it. It did nothing for my control and I was too used to being able to tweek by making tiny changes to basal or bolus, so I ended my pump”vacation”.
Added Metformin back when I was on MDI to help with DP (Dawn Phenomenon). Didn’t really get that beast under control until pumping, but it helped. More recently my endo started me on Jardiance, which has been amazing in terms of dropping my daily insulin requirement and above all for flattening out my peaks and valleys. Off-label for T1, but definitely worth investigating.
I am now 58 years down the road as a T1D insulin user. About 25 years ago my I was experiencing struggles with high BG readings that did not respond well to extra insulin. My doctor suggested adding Metformin to my insulin usage in hopes that it would smooth out the spikes in my BG readings. I tried it for several months without any measurable improvement. The better fix was to tinker with my insulin usage. I was using Lantus once a day plus regular insulin for meal time bolus. Increasing the bolus helped. Later I switched from Regular to Humalog for the Bolus. That was a much better fix.
When diagnosed at 43 they initially assumed type 2 so I spent over a year trying to control my sugar with six different pills, Lantus, and Victoza. I was so tired of trying and rejecting new pills I finally said just do insulin. They discovered that I was LADA and that finally worked
I tried symlin. No effect whatsoever.
I was on Rezulin® (troglitazone) in the 1990’s until enough doctor’s and patient’s didn’t follow the guidelines for use & blood work, causing it to be pulled from the market. It worked wonders for me.
I have been using the inhalable insulin, Afrezza, for almost three years. I have had the best A1C readings ever since I switched. I would not go back to injectable insulin for my bolus insulin. I hope that one day they also make an inhalable version of basal insulin.
Because I was an adult at onset they assumed Type 2 and started me on Metformin. That did not help and actually seemed to make things worse, luckily they did more tests to diagnose T1D before I got too bad off. I have a friend/neighbor now who had almost the same thing happen, except it got so far along they had to hospitalize him for almost week.
NO!!! ABSOLUTELY NOT!!! There’s no substitute for insulin! My body works just like any other body with a working pancreas! My insulin has to come from the outside rather than from within. Soon I’ll have a “closed-loop” system with a new pump that “reads” my CGM!!!
I take metformin- not sure if it helps. What I do believe helps is regular/daily exercise and a diet that includes a variety of fruits and vegetables. Just had my morning oatmeal with walnuts, strawberries, blueberries, half a banana, cinnamon, and almond milk. Feeling good.
I had an Endo put me on Metformin because she said I “looked more like a T2” because I’m plus size. I have been diabetic since I was 4 and the metformin didn’t help with my lowering my insulin needs enough to stay on it. I only took it about 6 months.
I was diagnosed as a T2D and used a combination of three oral meds for my diabetes for the first 15 years. They never worked. I averaged BG levels between 250 and 400+ the entire time. It was during a training class with my youngest T1D that his CDE said she felt like I had been misdiagnosed. I was immediately put on insulin and have enjoyed better control ever since. Adding a pump and eventually a CGM has given me A1C results between 5.5 and 6.2. I guess that T1 is not just for the young, but also for the young at heart.
I have had T1D for 59+ years. I am a diabetes educator, diabetes advocate counselor/psychologist. Like many of us, I work hard to maintain my balanced life with diabetes and I am also fortunate as I am in good health. I started using Afrezza, orally inhalable insulin 4+ years ago after a few well respected Endos with T1 told me they were using it very successfully. I then reviewed the science on impact, safety, dosing. Afrezza has made balancing my blood sugars far easier, given more safe spontaneity with food/snackschedule decisions and is safer as I have less high and low blood sugars. I am thrilled to say I am part time consulting for them, beginning last month.
Several years ago, my endo suggested I try Byetta in addition to insulin saying it should help me reduce the amount of insulin I needed. During the six months I tried it my A1c went from ~5 to about ~6.5, my infrequent lows and very infrequent highs became much more common and glucose tabs wouldn’t affect my dropping blood glucose levels for at least 30 minutes (giving me more lows and more serious lows) and the rebound from trying not to pass out from the lows gave me much more frequent highs. Ever since then (more than 10 years ago) I have had many more fluctuations in my blood sugar than I did before.
Yes, I used inhaled insulin. It was terrific. I had the best control ever; however, I can no longer use it because I cannot afford it. It was never covered by my insurance but Mannkind footed the bill. However, they are no longer doing that for me and I’m on a pump. My A1c is worse, my control is worse, I wish I could go back to Afrezza!!!!!
I take Victoria for insulin resistance.
I am going to be tryin Symlin soon to help control my highs when I have too many carbs. Sorry, love my carbs.
I have LADA. When I was first dxd they treated me like type 2 over 25 years ago with Metformin for 6-12 months. It did nothing for me, or at the least, very little. They put me on insulin and have been on it ever since.
I used Afrezza for about t 4 years and loved it. Good control and A1C’s in the mid 6 numbers. It was great for me because I stating having difficulty scar tissue (type 1 for 59 years) and absorption problems of insulin in a pump. Had to stop because of difficulty with medicare paying for it. Now on the pump. So far ok and no problem with absorption. Wish that Afrezza was not so costly!
I was on a variety of Type 2 meds after original diagnosis at age 30. They worked for 2 years and then stopped working entirely. I went on insulin and my doctor ran a c-peptide test to verify a T1 diagnosis. These days I use Afrezza for covering postprandial highs. It’s a fast acting way to get numbers down but the dosing isn’t very precise.
I was diagnosed as a T1 Diabetic in 02/1971. I participated in the NIH trial of Islet Cell Transplantation in Minneapolis, MN. My 1st transplant was in 08/2010, my 2nd was in 01/2011. I was able to be completely insulting free for 6.5 years. This was an absolutely phenomenal experience!
I chose “other” as I was being treated for T2D for a few months until no reduction in BG showed that pills were not working for my real diagnosis of T1D.
I have been on a very small titrated dose of Victoza (started at 0.2 mg now at 0.8 mg) for over three years to help with appetite control and post-meal spikes. It took 2 1/2 years to reach the 0.8mg dose. I was on Symlin for awhile before switching to Victoza, but even small doses of Symlin caused too many unpredictable low BGs and I was always having to cut my insulin doses in 1/2 – and it always felt like I was aiming blindly in the dark. I don’t have that issue with Victoza. I use a Tandem CQI for insulin delivery. Victoza serves as a hormone replacement substitute for amylin (Symlin) the other hormone my body doesn’t make. In my experience it has an added benefit to control stress related urges to overeat and my BMI is in the ideal range for my age and height.
I tried Invokana — off label, because insurance won’t cover it for T1. It was an awesome way to lower insulin doses but I knew I wouldn’t be able to be on it for long.
I’ve been a T1D for 41 years and 5 years ago I tried the Medtronic insulin pump. It was overwhelming for me and after 4 months of using it, I went back to my insulin shots. Great decision!!!!!
Been using Victoza for a few years now. It has helped me lose weight, helped with post meal spikes (although prebolus is still the best way to go), and helped lower total daily insulin amounts.