Questions for Type 1s taking Metformin

Type 1 and LADA
1

Hello,
I have been type 1 for 23+ years and currently on Animas Ping pump with very good control (6.2 A1C). However, I've had lots of issues with not being able to lose weight and some mild insulin resistance. Doc prescribed me Metformin at my check-up yesterday to see if it will help with the weight issues and some of the highs I've been experiencing (my highs take a really long time to come down). I think the does is 500mg (1 pill) per day, not sure, haven't filled the scrip yet. I plan to do it today and start tomorrow.

Just wondered what others experiences with Metformin and type 1 was. Any help with weight loss? Help with better blood sugars? Any bad side effects? (I know to expect the stomach upset and diarrhea at first). Any advice?

Thanks!
Cristi

2

Hi Tikicristi. I find that if I miss a dose of Metformin, I suffer higher BG than if I've taken it. I do not think you can count on Metformin for any weight loss benefit. I only very occasionally suffer any side effects from the Metformin.

I take something called Victoza. I have found that it not only reduces my appetite but it helps to balance my glucose levels (or so my expert tells me). My weight loss has not been severe, perhaps 7-8 lbs, but that's because I haven't been dedicated to exercise.

Upon diagnosis, I was something like 12.8 for an A1c. I'm currently at 6.0. It's taken time, but I'm feeling quite happy with my progress and am not sure I could have accomplished it without the aid of those two. I'd like to get off of the Victoza simply because it's one injection that I don't need but it will take time - I'm not quite where I need to be with my diet control.

3

You take Victoza? This is not comparable to Metformin. According to my knowledge and the website of the manufacturer this drug is "not for people with type 1 diabetes or people with diabetic ketoacidosis". Please contact your medical team about this.

4

While Victoza has been specifically forced (by the FDA) to make it clear that it is not a treatment for T1, it has been found to benefit insulin dependent diabetics and T1s. But the studies have not been done and provided to the FDA to substantiate the extension to these uses. I've not seen any information on adverse effects on T1s (except you need to adjust your insulin dosing). Doctors such as Bernstein prescribe Victoza (as well as Byetta and Bydureon) to T1s as agents which can smooth out digestion and help with weight loss. It's action in some ways affects the same paths as Smylin. As long as your medical team is fully informed about Victoza, your doctor (in the US) is certainly allowed to prescribe Victoza for off-label use.

5

Victoza for T1s is prescribed “off label.” For those with insulin resistance & a need for weight loss, it can work very well. The potential side effects are a bit worrisome so while it was discussed as an option for my teen daughter, I felt Metformin was a safer choice. We’ve seen a reduction in insulin needs overall, but not any real weight loss…4 or 5 lbs. She’s been on Metformin for just over a year. The first few days she had minor nausea, but changing the timing of the dose helped. We increased the dosage over a 2 month period & each time the nausea came back for 2 or 3 days, then subsided. She takes 500mg 3 times per day. Taking it on a full stomach seems to be the trick for her. If the side effects are too much to handle, you might want to consider the extended release.

6

For the FDA the risks seem to outweigh the benefits and I share their perspective. If this is a well informed decision and all the potential safety issues (cancer, pancreatitis) have been discussed I am fine with it. Although it is really absurd to squeeze out the few remaining beta cells. The hormon GLP-1 is foremost stimulating the insulin secretion. In my thinking this does not help to preserve residual beta cells. Other drugs like Metformin have a much better safety record.

7

Cristi,
That's so ironic...I was just going to post the same questions. I just started Met. yesterday and am also using the animas ping with an a1c of 6.2. I am also type one.

My questions are: when do you notice an effect on your basal rates? how much of a decrease in insulin occurs when adding metformin?

I'm hoping to decrease my tdd, hypos, and loose about 5 pounds. Good luck to you!
Toni

8

That is too funny Toni! Maybe we can help each other!

I have not started it yet, plan to get scrip today, just haven't had time to get by pharmacy.

Even for me, a 4-5 pound weight loss would be awesome because everything I do, diet and exercise, I don't lose anything. I really want to lose 15 pounds (leftover baby weight that never came off) but at this age and this stage, I'd take 5 lbs and be happy!

I have a very good friend whose been on Met for 10 years for polysistic ovarian disease and it has helped her with weight control immensely. I also know 2 other moms from my daughter's school who are type 1.5 (not sure what that means?) that only take Met and no insulin and both swear by it for weight control. My friend with PO says the extended release works better for her as far as no gastro side effects. I may ask for that one when I get the scrip filled.

Toni - let me know your progress as far as insulin adjustments and such and I'll do the same.

Thanks!
Cristi

9

Can't help regarding met & weight loss, as it wasn't an issue for me. But my endo felt that the benefits of metformin outweighed any risks and keeps me sensitive to the insulin which helps in the long run. Side effects have been rare - but I also take iron, so I think the two balance each other out regarding gastric distress...

Just remember that it takes a while for metformin to build up in your system, so you shouldn't expect anything to happen overnight.

10

My daughter was prescribed Metformin for treatment of PCOS. She had severe insulin resistance (TDD up to 120u/day) & gained 45 lbs in 2 yrs, while her endo team blamed her eating (low-moderate carb, low animal fat) & puberty, & the possibility of sneaking food (she wasn't sneaking). We didn't see much change until about 6 weeks after starting the Metformin, which was a few days after reaching her current dose. She now works out 5 days per week, 90 mins/day with a coach. We gave the RD/endo's suggestion of increasing carbs to 180g/day & it only made things worse, both for the PCOS symptoms & her BGs, so we're now back to a more reasonable (50-60g/day) carb intake. With adjustments to timing of the Metformin, we've been able to get her TDD down to 45u/day, & her PCOS symptoms are improving. I'm hoping with the lower TDD, maybe she'll have a better chance at weight loss now.

The only real issue we've had that we can directly attribute to the Metformin is her lows can be very stubborn now, particularly the lows during/following exercise. By monitoring closely (Dexcom) & testing/adjusting basals, we've managed to avoid most lows. Overall, her BGs are much smoother, especially after meals.

11

Regardless if you are type 1 and/or type 2; if your liver leaks excess glucose and fails to properly signal on the insulin, metformin helps cut back the excess glucose release from the liver buffer when it should be fasting.

The science is in and has been proven. Stopping excess glucose release from liver by metformin stops the fat cells and muscle cells getting overloaded with excess glucose shooting up insulin resistance as well as boosting ones weight out of bounds.

Insulin resistance is from overloaded skeletal muscle cells and fat cells all with insulin receptors trying to block any more transfer of glucose as they are full and suffering under excess oxidative stress.

Even on a 1200 calorie diet and 2 miles walking weight shot up till appropriate metformin doses cut hat mess off. Watched on cgms.

12

Thanks for your reply. I am not expecting Met to be a miracle drug as far as weight loss is concerned, I know I still need to put in the exercise work and eat well, which I do but I don't lose weight. I am hoping the Met will help what I am doing to work better and result in some losses, does that make sense?

Since your daughter has been on the Met and been exercising a lot and eating well, has she lost any of the weight? My friend with PCOS lost a bunch after they found the right dosage for her but like your daughter she does work out quite a bit. She also said the Met helps her curb her hunger so she makes better choices.

13

Thanks Jim. That sounds like me. I was down to 1200 calories a day and walking/jogging a lot, even did a month of boot camp and did not even lose 1 pound. Very frustrating. Once you started Met, did you continue with this same exercise/eating plan and finally see some weight loss?

14

All excellent questions!

There are non metformin comments and metformin comments.

a) during the day I could see and watch the CGMS BG level constantly drift upwards after digestion complete. Any dose up to sufficient strength re liver ( 500 mg to 750 mg) usually will cut off excess liver leak.
b) Dawn ffect from 3:00am to 8:30 am - for some a dose of slow insulin may help stop but for me - metformin doses more effective.
c) I found with cgms that at end of digestive cycle when BG is dropping, eating a snack can cause a liver dump.

so:

I do not like the massive doses once a day. For me here is what I do:

10:00pm and 12:00am midnight - one 500 mg dose at each time. That usually

wrestles dawn effect to ground.

One hour before each meal, I take a 500 mg dose of metformin and that stops sneaky liver dumps.

The other item my Doctor had me do was to watch my Blood glucose and not let is go under 100 or less to prevent forcing liver to add glucose when BG goes sub 70. My liver just wants to throw whole liver buffer in these situations instead of just bring glucose up to 100 and not exceed 20% plus.

Like I said - this what I do.

One item I really object to is this idiotic view that the body can take on huge dose of metformin and properly redistribute around the clock. Due to the fact that the liver is responding to up to strength metformin in blood AND NOT residuals; it is more effective to take smaller effective doses spread on clock for max liver benefit.

Others have this view it takes weeks to see metformin work. For me it worked on every dose and observable on cgms. Lag time - 2.5 hours.

The only way to provide proper levels across long time period is to space across clock based on effigy/half-life time. I spent tons of hours looking at this for my doc looking at blood pressure pills and metformin.

Incidently, the timing for metformin is 2.5 hours after ingestion tomax level in blood that liver watches. Then the time the dose lives is 1 to 3 hours and for me 2 hours. Lastly the effect dissapears in 1/2 hour for me.

The effect of the metformin was easily seen on the cgms and confirm the timing and see when the liver clamped back on glucose leakage.

Weight loss started as soon as liver monkey shines arrested. I was on same diet 2 years before and continued afterwords. I dropped to 241 pounds from 330 and the weight loss was slow and continuous.

15

She initially lost 7 lbs. but she gained most of it back when she stopped BC pills. They were making the insulin resistance much worse, so we decided to try just the Metformin, diet & exercise. I asked her at lunch & she said at her weigh in last week, she'd lost 7.5 lbs. That's since January, but half of it has been since the end of May. I'm anxious to see if the lower TDD will help. She definitely has less appetite now, but I'm not sure how much of that is due to her wanting to lose the weight, you know? She's really been putting a lot into her workouts, & she's also walking 2 miles in the evenings with me.

I hope you get good results. I know a few women who lost weight with it, so I know it works well for some.

16

This is interesting Jim. Thank you for sharing.

The gyn that prescribed the Met initially wanted her to take the full dose at bedtime. After reading about the the peak/half life, & with all the stomach issues it caused, we switched to 500mg with each meal.

We don't see much dawn phenomenon, but we did battle the spikes after meals. I was starting to think she had an issue with really slow digestion, because the spikes always started after the bolus wore off. Her endo kept insisting that her basals were off, but basal testing (& her Dexcom) proved otherwise.

I would love to try your way of taking the Met an hour before meals, but the nausea is just too much for her.

1 Like
17

That's great for her, I am glad she seems to be doing better with it! This is all encouraging to me, thank you for sharing.

18

I’m celebrating for sure. :slight_smile: I hope you’ll update as well.

19

TiaE:

Best wishes and good luck and always nothing about this diabetes is easy nor a straight line. I appreciate the nasuea issue problem. The only reason I backed it up was to ensure metformin up to strength as intestines emptying and seemed to block some weird peusdo liver response even when finger tips BG were at 140 to 200. All we could guess is that body has extra sensors in intestines and triggering off over some glucose short fall in the intestines. One could watch on cgms and actually see where liver/brain was attempting to do nasty glucose add for obsure reasons but as long as the sufficient metformin dose up to strength; no extra glucose would come out( a small rise only).

My other read is that if metformin helps - one has a liver issue/leak/excess liver glucose add. Otherwise, if not, then one is back looking at insulin issues - bolus and the basil and having that pack running properly. There is no one right answer except to point out that insulin stops working when the glucose saturation gets too high - max insulin resistance.

There is no insulin versus metformin discussion in my mind and technically these are two different drug/hormones for different needed reasons.

When one sees spikes , my experience has always been that only the liver high volume output/emergency add port has the horsepower and could spike the blood glucose. Intestine digestion et all may raise it too high but always slowly and rising and no sudden spikes. That was my experience watching the cgms.

20

Cristi,

I’ll keep you posted on my met/ insulin journey…balancing exercise should be interesting too. Glad to read your active too. Haven’t had any gastro side effects starting met…btw