Starting up with metformin as a T1 - in conjunction with insulin

Type 1 & LADA
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Like many older T1s, I was first diagnosed as a T2, and given metformin. When i was correctly diagnosed, i stopped taking metformin and went on to insulin only, going in a couple of years from pens to a pump. I’ve been on a tandem pump with control-iq about 8 years now. I’m under pretty good control - A1C at 6.6 at last week’s 6 month check-in. I’m fortunate to be treated at the Joslin Clinic in Boston.

Thanks to a recent NYT article which I found referenced here, I’m going back on Metformin. I’ve looked through the archives, and there’s lots of bits about metformin here. Everyone knows a lot about it - it’s been studied for years.

My PA thought it was a good idea. So now I’m taking two big pills (500mg) with breakfast and dinner. Stay tuned - we’ll see what happens…

e

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Considering how Metformin works it seems that it could be a good match for T1DM. It improves insulin sensitivity, slows digestion a bit. The inhibiting of glycogen conversion to glucose might be an issue because many with T1DM have Alpha cell disfunction.

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@bostrav59 Please provide some reports on your findings. I have this same thing on my list of discussion topics for my Endo at appt this week.

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Early days - but I notice a lot more dampening of spikes when on the Metformin (2 x a day - 500 mg a time). I am cautiously optimistic (cautiously is tough to spell - esp w/o any assistance).

A bit of a change in timing of my bowel movements - the PA says that can happen at the start of taking the medication. But no other noticeable side effects. The chart below from the last 24 hours is pretty flat for me - w/ no highs or lows.

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It’s not a problem with the alpha cells, which produce glucagon, it’s a problem with the beta cells, which produce insulin; the beta cells are the primary regulator of the alpha cells so if they are not doing their job the alpha cells don’t get their primary regulation and, in the words, “There is an impaired glucagon response”.

Further impairing alpha cell function by directly reducing glucagon production (rather than expecting our non-existent beta cells to do it) reduces basal requirements. I’ve not seen any clear research as to what this does but that’s pretty much de rigueur for anything labelled “diabetic”.

I have my guesses about what might happen, but they are guesses and therefore total BS. The fact that you reported lowering of spikes in May is interesting (I would expect more spikes with lowered glucagon) so I’m somewhat interested in what has happened since.

My T2 wife is on 500mg/day and so far as I can see it makes no difference whatsoever. I just ordered a Lingo to see if we can detect some change with proper equipment :slight_smile:

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There is a relationship between healthy Alpha and Beta cells. They have receptors for the hormone secreted by the other. This, in my mind, is a good case for a negative feedback loop.

If what I’ve read is correct the Alpha insulin receptors only respond to endocrine produces insulin within the islet.

This means those with T1DM and some like me with dead Beta cells can have fully functional Alpha cells but they don’t lack data.

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That’s approximately what the last paper I read says; it suggests that alpha cell glucagon response is only suppressed by the very high levels of insulin production from beta cells. Since they are in close proximity “very high levels” can correspond to not much at all; think how you respond when your partner is upset.

Fortunately we (T1s) don’t have that problem (or not).

Alpha cells do produce glucagon independently of the beta cells which we don’t have; the beta cells stop the glucgon response. Hence our basal. Nevertheless our whole metabolism is fail safe; when we lose those beta cells there is still a whole lot of us that survives, and we will!

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Quick update - Now that I’m on the metformin, I have to reduce my basal rates. I tend to run lower now. This is what we’d expect, but the response isn’t linear (why should it be?). When I’m exercising, I’ll have to eat a lot more carbs to keep from going low now. And at night, I turn on Tandem’s exercise mode, to reduce the basal. Otherwise I’ll often go low in the middle of the night.

So, as we would expect, it increases my responsiveness to insulin (or you could say it increases insulin’s effectiveness?) but not in a simple or linear way. Much less change in the middle and upper ends of my glucose levels, and much more change on the lower extremes. So if I’m going down (via exercise, for example), now I’ll go down faster and further. But if I’m going up there doesn’t seem to be as much of an impact of the metformin - ie I stay up for about the same amount of time.

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I swear that with diabetes some of us wake up in a new day every day. What worked well one day may or may not work the same the next, Oh, and as one gets older that seems to bring its own iinstabillity.

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Agree! :zany_face:

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Just wanted to give everyone a quick update on this experiment.

I have stopped taking metformin. While it did help me with insulin sensitivity (made me more sensitive) it also caused great constipation.

so right now I am off of metformin and back to dealing with more highs - but no more constipation!

Hope that’s not tmi.

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[no more constipation!
[/quote]
Odd most go the other way

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FWIW that was my reasoning too. The benefits for BG control weren’t sufficient to offset the digestive costs.

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Thanks CarlosLuis - yeah that’s what the internet says. It is a relatively rare side effect … I can only report my own experience. It could also have had something to do with the increased exercise - I was doing about 55 miles a day of cycling and it was hot, so those things could have combined.

I’m wondering if anyone thinks I should give it another go?

“Constipation is possible with metformin treatment. In clinical trials of metformin, constipation was rarely reported.”

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Are you going to be cycling at that level frequently? Are you able to be fully hydrated? I have been on metformin for a few years now and it helped dramatically with insulin resistance. I would hate to lose it. I also work out a ton (checked apple health recently and am at an average of 103 minutes/day for the past year (not extreme cardio, but cardio nonetheless). I do drink consistently and pretty big quantities of water daily. I would lean toward giving it another go, if you feel like your daily conditions could support it. Eric also recommends psycillium capsules if fiber is an issue.

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Thanks Jessica - the hydration is a good question - quite possible that I was not fully hydrated initially … I agree with you about the insulin sensitivity. I might give it another go, maybe at a lower dose (500 mg/ day). See what happens.

e

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Sorry to sort of piggyback here, but a question emerges for me. I am a LADA t1d, but only had a brief 1 year or less honeymoon. So I have been on Metformin for the full five years since my diagnosis. Immediately, within the first year, I was in the emergency room with very low sodium, they said, within a point or two of dying, and I always know what that feeling is, and tried to mediate it myself, the first couple of years with Pedialyte, of all things. I’m sure you know how much that added to the challenge of managing carbs! Anyway, last August I had a major crash and a terrible doctor that did not even try to do anything to help when I went twice without him even offering anything, and when I refuse to come back again after he ran a test from the same day, and probably was stunned by how low my sodium was because I had told him the previous number was supported by a lot of Pedialyte because I thought I would die before I got to my appointment. Anyway, he then prescribed 1 mg of sodium for me to take twice a day, once with supper once with breakfast. So I’ve been taking these 2 mg of sodium for the last year and still have had some bad crashes. They finally did some other bloodwork and found my renin level is also low. And with a positive ANA sent me to a rheumatologist who is sending me back to the endocrinologist to deal with that and low energy beyond what I’ve ever ever experienced, yeah I’m hanging on to doing my exercise because I’ve been exercising the same for 40 years. So while I wait now to get in to nephrology referral about this, I wonder if something with Metformin could be where I’m losing my sodium. I know it sounds like a longshot but it’s taking me all these years to get anyone to listen to me and to try to delve deeper. So I’m sorry this got very long and probably way too detailed, but does anybody have any idea if that could have anything to do with my sodium? And sorry, if it grosses people out, it doesn’t gross me out one bit, but my poops ever since being diagnosed, and at the same time, put on Metformin, Have always been small little poop balls not very hydrated. Lately because of some great articles, I’ve read by Dan Heller, I’ve tried to up my carb intake because they had me on 45 carbs per meal for three meals a day, and as my exercise gets harder and harder, I realize I need my glycogen stores to be filled. I exercise for about a very fast 4.5 mile walk about 3-4 days a week and weight train two days a week. But this last year I’ve had a hard time maintaining the exercise because every walk day my fatigue is so much that I can’t even wash the dishes much less do anything else. So basically, I’m not living a very wonderful life but I love my exercise and I set up my exercise habits in my 20s so that I would live long and prosper. Who knew I would get diagnosed with diabetes in my late 50s. Anyway, I am well hydrated and have always planned for my hydration for the last 40 years as well because I’ve always been interested in exercise physiology. Despite the hydration, that is how my poops have been, and I even asked the nurse practitioner when they were deciding if I had to have a colonoscopy, and I didn’t I got to mail it in, but she had a poster on the wall that looked like my poops and said that is dehydrated. And I said well, I get probably 10 8 ounce glasses of water a day. So when I have changed my carbs and added mashed potatoes or Half a baked potato, or a whole apple with my lunch instead of a half, and lately, even adding oatmeal at breakfast, as I try to raise my carbs in a gentle way, my poop sometimes Is now more hydrated, but I would just call them fluffy large poop balls, rather than small, dehydrated ones. If anyone wants to comment on any of this, I would be grateful. But I’m particularly wondering if Metformin could contribute to any of this, and if it would be worth me stopping for a bit. And regarding the renin level above, that was the first time, I actually got to see a real endocrinologist, and I had to beg and insist on that appointment because of how bad I was feeling and my sodium was very low as well. So I will only be seeing him for the second time at the end of this month to try to get him to deal with the fatigue stuff as well, but I know I’ve got to get this sodium issue solved because it has been with me this whole time. The problem was I thought diabetes was this hard to manage and that if I worked very hard on my diet and exercise and also my A1c that I would be healed. So believe it or not at the end of August, I had a 5.2 A1c. The best I’ve ever had but I’ve been under six for the last four years because I have been diligent on the diet. And then it occurred to me that it’s not diabetes. That’s so hard. It’s being sick and tired from whatever else is going on. I feel like I can do diabetes but I am not living. So anyway, he put me on fludrocortisone At the end of our appointment in August and just half a tablet and said it would be very unlikely for my renin to also be low and I told him I would be the unicorn and I was. I was having a hard enough time with the half a pill because it hypes me up so much that I’m not myself and I’m not really feeling like I’m living I’m just real busy. But when he got the test results, he told me to take the whole pill once a day, which I believe was .1 g, but I can’t remember offhand. Anyway, I have slowly withdrawn and taken myself off of it and actually have thought it’s a better compromise to just be me right now because I don’t do well with some medication‘s. So there’s all that commotion in my health and I haven’t reached out because I usually don’t feel well enough to write. Now I’ve written a book. But this just is something to consider I think because it’s one thing I have not even looked into. If you have any suggestions on anything, I would be appreciative! They’re still working on getting me into nephrology, which I think will be the proper place for the sodium management but somehow it’s been like five weeks and I emailed the doctor about once a week through my chart and they’re still not successful. Alrighty sorry to everybody that this was long and I hope that the people that really resent it just quit reading it and left but if anyone has help, I am grateful! And I’m just grateful that this forum is here.

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@Quadgirl I hope you don’t mind, I broke your post up into sort of paragraphs to make it a bit easier to read.

Metformin can increase sodium excretion, never happened to me, but we are all different.
It normally causes loose stools and gas.

Now what I am wondering about is why as a T1DM you are on a T2DM drug. Are you using insulin as your honeymoon period has ended?

I’m puzzled by your low sodium and low renin as one of the causes of low renin is a high sodium diet. How’s your blood pressure, renin helps control blood pressure, so low renin goes hand in hand with hypertension.

I wish I could be more helpful, Quadgirl.

Here’s your post broken up a bit.

Sorry to sort of piggyback here, but a question emerges for me. I am a LADA t1d, but only had a brief 1 year or less honeymoon. So I have been on Metformin for the full five years since my diagnosis. Immediately, within the first year, I was in the emergency room with very low sodium, they said, within a point or two of dying, and I always know what that feeling is, and tried to mediate it myself, the first couple of years with Pedialyte, of all things.

I’m sure you know how much that added to the challenge of managing carbs! Anyway, last August I had a major crash and a terrible doctor that did not even try to do anything to help when I went twice without him even offering anything, and when I refuse to come back again after he ran a test from the same day, and probably was stunned by how low my sodium was because I had told him the previous number was supported by a lot of Pedialyte because I thought I would die before I got to my appointment.

Anyway, he then prescribed 1 mg of sodium for me to take twice a day, once with supper once with breakfast. So I’ve been taking these 2 mg of sodium for the last year and still have had some bad crashes. They finally did some other bloodwork and found my renin level is also low. And with a positive ANA sent me to a rheumatologist who is sending me back to the endocrinologist to deal with that and low energy beyond what I’ve ever ever experienced, yeah I’m hanging on to doing my exercise because I’ve been exercising the same for 40 years.

So while I wait now to get in to nephrology referral about this, I wonder if something with Metformin could be where I’m losing my sodium. I know it sounds like a longshot but it’s taking me all these years to get anyone to listen to me and to try to delve deeper. So I’m sorry this got very long and probably way too detailed, but does anybody have any idea if that could have anything to do with my sodium?

And sorry, if it grosses people out, it doesn’t gross me out one bit, but my poops ever since being diagnosed, and at the same time, put on Metformin, Have always been small little poop balls not very hydrated.

Lately because of some great articles, I’ve read by Dan Heller, I’ve tried to up my carb intake because they had me on 45 carbs per meal for three meals a day, and as my exercise gets harder and harder, I realize I need my glycogen stores to be filled.

I exercise for about a very fast 4.5 mile walk about 3-4 days a week and weight train two days a week. But this last year I’ve had a hard time maintaining the exercise because every walk day my fatigue is so much that I can’t even wash the dishes much less do anything else. So basically, I’m not living a very wonderful life but I love my exercise and I set up my exercise habits in my 20s so that I would live long and prosper.

Who knew I would get diagnosed with diabetes in my late 50s. Anyway, I am well hydrated and have always planned for my hydration for the last 40 years as well because I’ve always been interested in exercise physiology. Despite the hydration, that is how my poops have been, and I even asked the nurse practitioner when they were deciding if I had to have a colonoscopy, and I didn’t I got to mail it in, but she had a poster on the wall that looked like my poops and said that is dehydrated.

And I said well, I get probably 10 8 ounce glasses of water a day. So when I have changed my carbs and added mashed potatoes or Half a baked potato, or a whole apple with my lunch instead of a half, and lately, even adding oatmeal at breakfast, as I try to raise my carbs in a gentle way, my poop sometimes Is now more hydrated, but I would just call them fluffy large poop balls, rather than small, dehydrated ones.

If anyone wants to comment on any of this, I would be grateful. But I’m particularly wondering if Metformin could contribute to any of this, and if it would be worth me stopping for a bit.

And regarding the renin level above, that was the first time, I actually got to see a real endocrinologist, and I had to beg and insist on that appointment because of how bad I was feeling and my sodium was very low as well. So I will only be seeing him for the second time at the end of this month to try to get him to deal with the fatigue stuff as well, but I know I’ve got to get this sodium issue solved because it has been with me this whole time.

The problem was I thought diabetes was this hard to manage and that if I worked very hard on my diet and exercise and also my A1c that I would be healed. So believe it or not at the end of August, I had a 5.2 A1c. The best I’ve ever had but I’ve been under six for the last four years because I have been diligent on the diet. And then it occurred to me that it’s not diabetes.

That’s so hard. It’s being sick and tired from whatever else is going on. I feel like I can do diabetes but I am not living. So anyway, he put me on fludrocortisone At the end of our appointment in August and just half a tablet and said it would be very unlikely for my renin to also be low and I told him I would be the unicorn and I was. I was having a hard enough time with the half a pill because it hypes me up so much that I’m not myself and I’m not really feeling like I’m living I’m just real busy. But when he got the test results, he told me to take the whole pill once a day, which I believe was .1 g, but I can’t remember offhand. Anyway, I have slowly withdrawn and taken myself off of it and actually have thought it’s a better compromise to just be me right now because I don’t do well with some medication‘s.

So there’s all that commotion in my health and I haven’t reached out because I usually don’t feel well enough to write. Now I’ve written a book. But this just is something to consider I think because it’s one thing I have not even looked into. If you have any suggestions on anything, I would be appreciative!

They’re still working on getting me into nephrology, which I think will be the proper place for the sodium management but somehow it’s been like five weeks and I emailed the doctor about once a week through my chart and they’re still not successful. Alrighty sorry to everybody that this was long and I hope that the people that really resent it just quit reading it and left but if anyone has help, I am grateful! And I’m just grateful that this forum is here.

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Thanks so much for the edit into paragraphs! I so, so appreciate it! And for your questions, I’ve been on Metformin since diagnosis and the tested for GAD antibody and stayed on the drug. One time I didn’t refill the prescription right away and I was well after the honeymoon. So I figured it wouldn’t matter but it sure did make a difference in my blood sugars. So at that point, I just decided to stay on it and only recently thought maybe that’s not a great idea. And my blood pressure tends to be normal or a little bit high. I know nothing about renin, or even how sodium is affected by Metformin, so thanks for that! I really just think that because I do exercise and take care of myself, I present as very healthy, yeah, they don’t know that I don’t have energy to do activities in life. And now, even when I try to back off the sodium to half of a pill, I can’t really do it because it makes me really sick. And as I said, in my mind, I will always remember my second emergency room visit in my whole life, the first being upon diagnosis with my 665 bg. And the second I just thought I was dying and waited through the night until 4 AM to go to the emergency room and they just took me up to an IV and gave me electrolytes and sodium and said that I would need to just use Pedialyte in the future as I felt these episodes come on. I think they totally disregarded that I had diabetes at the time. But I do know what the low sodium feel is for sure. So I very well may just suck it up and deal with my blood sugars and stop metformin to see if I can get relief. I would love to be able to help myself in anyway, because I’m really struggling to have a chance to even see the real endocrinologist, and I truly had to insist, because I think they thought, since my blood sugar is so well-managed I don’t need one. Yeah, I’ve mentioned the low sodium for years and the nurse practitioner just said add salt to your food which I was already doing. Anyway, this will give me more to discuss in my later October 15 minutes with the Endo. And last time they just fit me in on Friday afternoon when they close at noon and this time they’ve got me coming in at 7:30 before they open so I’m not even sure he has taken me as a patient. Anyway, hopefully at the end of just struggling and somebody will help very soon. Thank you again for fixing my run-on life story. I really regretted hitting the button to send it right after I did it knowing that that was sloppy. And thank you so much for taking time to respond. I think talking to real people here who understand the struggles is probably my best bet and can guide me as to what to talk to doctors about. Thanks again!

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You might ask your endo to order tests fo renin and hormone aldosterone. There’s something not right, low sodium and low renin is contrary. I’m not doubting you.

I hope the endo is one who looks at the whole endocrine system and not just diabetes

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