I've had enough

May 23, 2022 9:31 AM

I've been on Metformin for PCOS (presenting with insulin resistance) since I was 16 years old. The notorious GI side effects of Metformin have never gone away. I cannot take this anymore. Don't read inside if gory details of unpleasant GI symptoms gross you out.

I am 37 years old. 21 goddamn years of upset stomach, tummy ache, loose stools, diarrhea, urgent need for a toilet, and embarrassment. It's only sort of helped me lose weight but not nearly enough to write home about. I was on regular Metformin for a long time, switched to ER about 7 years ago hoping it would get rid of the side effects. It did not.

I just can't anymore. When I worked in offices it was humiliating having to run to the toilet every hour. Now that I WFH it's less embarrassing because no one is witnessing it but I just don't want to deal with this anymore. It's uncomfortable and awful and I have reached the end of my rope. I literally have bowel movements 7-8 times a day. If I eat fucking romaine lettuce I can guarantee a day of liquid stool the next day. It's SALAD. I'm trying to keep my carbs low to help with this condition and I can't eat a fucking Caesar salad without sitting on the toilet for hours and hours?!

I have an appointment with a new endocrinologist (I recently moved) in a month. I want to ask the doctor about switching me to another medicine. Yes, the metformin has kept my A1C out of the diabetes danger zone very effectively (a good thing as diabetes runs in my family), but surely in the past two decades there are other meds that have developed that can help curb appetite, help with weight loss, keep me from being diabetic, and allow me to have solid bowel movements less than 7 times a day, right? I cannot live like this anymore. It's noon, since I woke up this morning at 7 I have already had four bowel movements. I just can't take it I can't I can't I can't.

I know YANMD but if anyone out there has taken a different medication than metformin for insulin resistance/PCOS that 1) works and 2) doesn't result in GI hell, I'd love to hear more about it so I can advocate for myself at my appointment. I have seen three endocrinologists since my initial diagnosis (changes all related to moving house) and I feel like the two most recent doctors kept prescribing metformin to me because that was what my first doctor gave me and complacency/it works/low A1C blah blah blah. At least my last endocrinologist tried to help with the GI stuff by putting me on the ER formula BUT IT DIDN'T GODDAMN WORK.

Sorry for shouting I'm quite het up right now. I have endured these side effects for nearly half of my life, I cannot do this anymore I need to lose weight I don't want to get diabetes I don't want to have the runs constantly I want to cry. Please, any advice would be welcome.

posted by nayantara to Health & Fitness (11 answers total)

Best answer: YES! Victoza/Liraglutide. I had the same issues with Metformin, then tried this. It's amazing, frankly. No GI issues to speak of, but effective in reducing A1C and suppressing appetite. Semaglutide is similar but does the same thing, or so I'm told. Only downside is that it's expensive in comparison to Metformin so you may need to fight with your insurer a bit to get it covered.
posted by daikaisho at 9:42 AM on May 23, 2022 [3 favorites]

Best answer: That sounds awful, so sorry. As a fellow Metformin taker for a pretty similar length of years, I remember the early months of going on it and yeah, its gross, I was very happy - as were my family and fellow commuters - when my body adjusted.

So first, definitely tell your doctor you are going to try something else. There are a lot of different pills out there, and it sounds like you've been able to control your A1c... that means another pill will, too.

But word of caution - I'm surprised your GI conditions have lasted years, decades even, and I think you should prepare for them to continue after you change medications. Its possible its something else causing it, b/c Metformin is just (usually) not that invasive. Maybe you should go to the doctor specifically to address the GI distress overall. Obviously not a doctor and I know nothing more than collected anecdotes.
posted by RajahKing at 10:14 AM on May 23, 2022 [4 favorites]

Best answer: The British National Formulary suggests the following for treatment of Type 2 diabetes when metformin is not tolerated:

"If metformin is contra-indicated or not tolerated, initial treatment should be single therapy with:

a sulfonylurea (glibenclamide, gliclazide, glimepiride, glipizide, or tolbutamide) (first choice), or
a dipeptidyl peptidase-4 inhibitor (linagliptin, saxagliptin, sitagliptin, or vildagliptin), or
Pioglitazone."

Those will be the generic rather than brand names. Metformin for PCOS is off-label use here, so I looked up diabetes medication instead. This at least gives you suggestions to explore with your endocrinologist.
posted by plonkee at 10:26 AM on May 23, 2022

If you decide to go off metformin and your primary concern is controlling your A1c and insulin resistance, then that can be (for some people, not all) controlled by diet. The two most recommended paths forward are are either a) heart-healthy low carb, with lots of fiber, no simple carbs, and an emphasis on lean protein or b) whole food plant based (sometimes with no oil) which means nothing that’s not a minimally processed part of a plant. There are plenty of cookbooks out there with not just recipes but advice on implementing these diet changes. Regular exercise also helps with insulin resistance not just through overall metabolic help but because vigorous exercise triggers glucose uptake through a non-insulin-dependent pathway.

This can be very effective; the bad news is it’s a lot of work. The person I know who controls their T2 this way says it’s like a part-time job.
posted by bq at 10:27 AM on May 23, 2022 [1 favorite]

Response by poster: bq I would LOVE to be able to manage this just with diet and in the early days of my diagnosis met with a nutritionist who worked exclusively with diabetic patients to get a bit of an action plan. I generally do sorta low carb/high protein/moderate fat but not to the extent that I can go off of the medication - it's just too difficult for me/my time/my life circumstances to really focus on keeping that much control. Also, I had a roommate who went full keto over a decade ago and I tried to join him (it was low carb!) and it resulted in a near-constant state of hangry and also some disordered eating habits that I still struggle with to this day. (Not roomie's fault and I don't begrudge him - it worked for him!... until he got married and had a baby and didn't have time to manage a somewhat complicated diet and has now given in to Dad Bod).

Bottom line is I'd love to be able to control this without medication but I don't see that happening realistically. Maybe once I lose a chunk of weight I can revisit the issue.
posted by nayantara at 10:48 AM on May 23, 2022 [1 favorite]

I've no direct knowledge or experience with this, but Nadia Pateguana of thefastingmethod.com seems to have had success with what you describe. There was some discussion of metformin, though only tangential to your question, in a recent podcast.

FWIW.
posted by lagomorph at 11:51 AM on May 23, 2022

Best answer: Two new diabetes treatments that have a lot of promise in helping with other conditions (cardiovascular disease, kidney disease, obesity, etc) are GLP1 receptor agonists (liraglutide as mentioned above, but also semaglutide and some other similar meds) and SGLT2 inhibitors.

I don't know if either of those is potentially helpful in your particular situation but the point is that there are in fact a good number of options and there is no reason to put up with bad side effects from one particular medication. Just have the conversation with your doctor(s). It's worth trying a few simple things like XL but if you give them a try and they don't work, then they don't.

FWIW the GI issues are the number one reason people can't tolerate metformin. So you are in good company . . .
posted by flug at 2:02 PM on May 23, 2022

Best answer: I'm on Ozempic which is a liraglutide and it's going great. The only problem I have is constipation so perhaps it would balance you out!
posted by hazyjane at 10:02 PM on May 23, 2022

Another datapoint: I've taken Ozempic (semaglutide) for a little over a year and have had metformin-style digestive events, especially when I'm less conscientious about eating low carb. That said: It's been so great for me in every other respect that I'm willing to put up with it.
posted by gnomeloaf at 2:20 PM on May 24, 2022

Can you adjust downward on the Metformin for a while and see if it helps? I haven't heard a lot of people who have long-lasting digestive effects - and I know a lot of people taking it off-label to help lose weight (including me). It's usually a bad first couple of months and then it goes away nearly 100%. (Not ER in my case) What dose and frequency are you on?
posted by getawaysticks at 7:30 PM on May 29, 2022

Response by poster: I'm on 2000mg 1x a day. Started by taking the full dose in the evening as my doctor directed. Over time she changed it to 1000mg in the morning and 1000mg in the evening. Then 500 mg 4x a day. I always take it with a meal or some sort of food.

It doesn't matter how much I stagger the dose, my stomach just cannot handle this medicine. I gather that when I was first diagnosed 20 years ago it was the only med out there for PCOS/insulin resistance. Things have changed and I'm not willing to live like this anymore.
posted by nayantara at 5:36 AM on May 31, 2022