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.
Related Stories
27 Comments
Experiencing weight fluctuations is a common experience in adulthood. If you're an adult with T1D and you have experienced a weight change (gain or loss of 10lbs/4.5kg and you remained at that new weight for at least 6 months or more as an adult), how did your insulin needs change? Cancel reply
You must be logged in to post a comment.
Just when I thought I had a bone-deep understanding of how the human body works, I gained 10% in weight over the 2 year pandemic without any increase or decrease in insulin. How does this happen? ◟₍⁽⁰꒫⁰⁾₎◞
I don’t gain or lose that much weight but have stayed close to the same weight since I was in my twenties. It seems the older I get, the less insulin I need though after 65 years T1.
My weight has remained stable. When I was first went on insulin, I did rapidly gain weight. I currently weigh about what I weighed at age 20. I do exercise almost every day.
I gained about 30lbs when I brought my A1C down 6 points after a really bad point in my life/diabetes. But my insulin ratio and lantus amount stayed the same.
This should have been a question with multiple answer options because just about all of the above applies to me!
I have not experienced weight gain or loss with T1D, except for a 45-day study using Victoza that caused me to drop 15 lbs. I’m not advocating the use of this T2 drug, though. It was an awful experience. Otherwise, I have maintained a steady, healthy weight through adulthood. I was dx’d at age 5.
I selected “My insulin needs stayed the same after I gained weight”, but that was after my initial diagnosis some 40+ years ago.
Prior to my diagnosis I lost 27 pounds in the space of 4.5 days … that’s according to my doctor’s scales.
Obviously, my doctor suspected that something was wrong so he asked me to provide a urine sample, which was tested with a urinalysis dipstick. It turned bright orange, which indicated that there was a lot of glucose present. (For those not aware, home blood glucose testing … and doctor’s surgeries having access to blood glucose testing facilities … was still several years away.)
He wrote out a letter to my local hospital and asked me to take it there right away. I was kept in hospital for about one week and began insulin injections that same afternoon.
Since that time, there have been minor fluctuations as to my insulin requirements, but once my weight had returned to a somewhat ‘normal’ level I have neither lost, nor gained, much weight.
My insulin needs have basically stayed nearly the same around 30 units a day. With control-IQ my basal varies greatly sometimes. My totals have gone once as high as 38 units. But it’s my weight that drives me crazy! And I’ve shrunk! I’m now 5’1″ and I don’t like the “middle-aged spread” at age 75! I’ve tried to get rid of it,
I recently lost about 15 pounds through dieting. My husband is on the diet, but because I am the cook and grocery getter I have lost as well. It is good that my insulin needs are down ( insulin is a fat hormone) but I attribute that to eating less carbs.
I gained weight in the late 1990’s but I don’t remember how it affected my BS and the insulin dosages. I was diagnosed with insulin resistance (IR) with the weight gain. I have four relatives with T2. I guess I inherited a T2 gene?? I used Metformin and lost all the weight I had gained, but there is still some IR. There are many T11Ds with IR. They are T1 but not also T2. They are T1 with a T2 characteristic.
I cut my insulin by almost a third when I found a hearty breakfast followed by an exercise class, and a balanced dinner, made skipping lunch possible. Sometimes I’ll have a slice of cheese or some nuts, but I’m not usually hungry. Weigh 25 lbs less is better for my metal hips, and after my insulin copay went to over $700 every two months, I had to do something. This has worked for the last three years.
I gained weight during a period of 20 years until I reached around 100 kg/220 lbs. At 2010 I started with low carb, resulting in a 80% decrease of insulin needs. With that I lost about 20 kg/44 lbs in 4 months, and have stayed on that level since then.
Today my weight is highly related to the amount of insulin I need. If I during times is forced to increase the basal insulin (like in times when I’m having a cold or being sick) I have noticed that for each unit increase of insulin, my weight goes up 0.5 kg/ 1.1 lbs. After going back to normal basal dose, the weight follows down.
So I believe that the main contributor to the initial weight lost was the decrease of insulin, after switching to low carb.
T1D since 1981, LCHF since 2010.
I need the option to indicate both weight gain and weight loss. When I gain, insulin resistance goes up and I need more, even when fasting. When I lose, insulin resistance goes down and I need less.
My insulin needs dropped dramatically after the Adventist doctors found and fixed not just a congenital heart defect but also severe calcification of an aortic flap. Their repairs border on the miraculous. I’m using less insulin, able to exercise (gone from not able to walk a city block without collapsing to walking up to 6 miles a day – all the while dialing back the insulin doses.) If you have insulin/diabetic concerns – please consult your entire health care team – not just your endo practice. They may be able to provide directions that directly affect your struggles to fight our disease,
Be well – be better
I have had T1D for ~ 45 years, over the last ten years my weight has dropped about 10kg(22lbs) and my insulin dose has gone from ~ 35 units to 23 units per day. I have always had a terrible appetite and find it difficult to maintain my weight. I try to eat 150 – 200g of carbs/day, A1c ~ 6 for as long as I can remember.
Being LADA and dx’d at 55, I gained 20 lbs. 130 to 150 and have kept that weight on even with daily exercise and strength training. I eat a healthy lower carb. Once my honeymoon was over my insulin needs have been basically the same for 8 years.
You gained weight after adding insulin because while you were undiagnosed your body was burning fat while you were spilling keytones. Like a person would on a keto diet. As soon as you started insulin & got control or sugars your body stopped spilling keytones and this stopped burning that extra fat. So, the extra 20 is actually much healthier with better diabetic control.
I gained approx. 20 lbs. twenty years ago, and my weight has been steady since then. I cannot remember if my insulin needs changed 20 years ago, but despite having a steady weight afterwards, I still have experienced fluctuations in my insulin needs, the most recent being caused by gastroparesis.
Doctor put me on weekly Ozempic to help lower my insulin usage, appetite, and help me lose weight. It’s done the first 2, haven’t noticed any weight loss yet.
Over the last many years, especially from 2013 onwards, I gained a lot of weight. Last year I made some changes. I started IF which means I don’t eat breakfast and no snacking after 8pm (unless I have to treat a low). Just doing that my insulin needs dropped even before I had noticeable weight loss. Part of that was I always ate high carb breakfasts and my I:C ratio for breakfast was always the most aggressive. Just cutting breakfast dropped my insulin use by a lot!
I gained weight because I was eating more than I needed and a lot of it was junk food. More carbs = more insulin = more weight. I don’t do low carb now, eating 124g-150g of carbs daily, TDD through my pump is usually ~25 units. I just track my calories and try not to focus too much on how much is carbs, fat, protein etc.
About ten years after dx with T1D, I lost more than 8% of my weight with no known cause. I have many other conditions and medications.
My need for insulin was reduced and has stayed low even though I have gained some weight back. I am still underweight, which was not the case before.
Having been Type one for 50+ years I have no idea. Yes I’ve gained weight, not untypical over a 50 year span, whether it has affected my insulin needs more than using a pump or having a CGM or better food labeling, who knows.
I have both gained and lost 10 pounds or more as a T1D adult, but the changes have occurred over extended periods of time. As my insulin regimen has also changed over time, due to age(?), activity levels, etc. it is difficult to attribute those changes to weight changes.
My insulin needs decreased, however, the reasons I lost weight were dietary modifications and increased exercise, which has been maintained.
With the exception of weight gain/recovery in the year after my diagnosis and temporary weight gain during my two pregnancies, I have not had weight loss/gains.
My insulin needs decreased when i lost 30 pounds, but I believe that was due to low carb and exercise… after I lost the first 10, needing less insulin (while maintaining a good A1c) helped me lose more weight
Gaining a significant amount of weight went hand in hand with pregnancies for me. My needs went thru the roof because @ 16 years being T1D when first son was on his way, insulin resistance set in + I had to eat 4,000 calories/day for his needs to grow. During pregnancy, I used an insulin pump and took injections due to such high bolus’s. I gained 60 lbs and have been carrying it around for almost 21 years. Loosing the weight has been impossible