Dark Underbelly of Metformin - A Saga...

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maryjaneholland

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* Fair Warning * If you are very easily offended and squeamish about descriptions of medication side effects or bodily fluids, it's probably best to skip this post, you have been warned...

Outside of my comfort zone but very tired of saying "I'm fine" through gritted teeth and forced smiles, I have been struggling with side effects of Metformin extended release 2000mg per day (1000mg with breakfast, 1000mg with evening meal) and still relative newbie to the world of Type 2 Diabetes, certain foods and conditions like high levels of stress make the bad side effects worse such as very painful indigestion, uncomfortable bloating, explosive diarrhoea and painful bowel movements, which inevitably have destroyed my social life and robbed me of all my confidence when I go out as our society makes no allowances for accessible public toilets, so I have been forced under duress to request from my supportive GP adult diapers for the "bad days" where I have to go out and the Metformin side effects are very difficult to live with...

I know it's easy to say "well just stop taking Metformin then" but it has helped me to massively lower my blood glucose levels and I have to persevere until I have lost excess weight and maintained all the lifestyle changes required before that's something I can consider, and I am aware that some people have rejected all diabetes meds in favour of low carb diets but I currently cannot commit to any low calorie low sugar, low carb low calorie meal replacement diet due to my current circumstances, and there are no quick fix solutions to weight management - bariatric surgery is not for me, extremely risky and many unpublicised side effects such as keeping food and drink completely separate for the rest of your life and risks of painful infections post-surgery and even being fitted with stoma bag if surgery and treatment does not go to plan, so not exactly as advertised or "luxury Turkish holiday with surgery in five star hotel" blah...

Trying hard to find the humour in an impossible situation we are all taught not to discuss in polite society, so ultimately cancelling all social engagements to spend my free time doing lots of laundry loads and buying lots of detergent and toilet paper in bulk isn't working out, so if the adult no-poop-it-all diapers means reclaiming some control back over my life and wearing more clothing than cheap black sweatpants and black oversized shapeless tops as an exercise in hiding in public, then it's worth it on worst days and I am shamelessly exposing my self here to encourage others again to reframe their suffering, re-examine their pain, refocus their self-perception and reimagine their lives how they want them to be accepting and living with diabetes and all the meds side effects and all the stigma around weight management to be the best version of themselves they can be because life is too short to be controlled by poop!

Drag queens, comedians and performance artistes have made living and name for themselves using toilet humour and poop jokes throughout the ages and here's classic parody from New York Drag Legend "Lady Caca" AKA Sherry Vine, but again considering the subject matter, if you are very easily offended and in work environment and don't understand the power of reclaiming stigma and fighting oppression using humour and comedy, then go watch something else, change the channel, look elsewhere NSFW, because Ghurl, I just sh*t my pants! Thanks Metformin! This is NOT sponsored advertisement!
 
Dr David Unwin's Norwood Surgery treat T2D as a problem to be solved in each case. It's a shame you are not on their register. From what you say a high dose of Metformin cannot be part of your solution.
Links:
- Dr Unwin's very interesting presentation to other GPs The nuts & bolts of drug free T2 diabetes remission
- Norwood Diet Sheet
I hope these will help you find a better way forward.
 
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I totally empathise with your side effects - have been there, done that and got the T-shirt (and a supply of unmentionables). My solution - I asked to change medications - it's not the only one. My Metformin was reduced to just 500gm a day (which I can tolerate) and I was given Linagliptin and Dapagliflozin instead. The terrible side effects wore off and my HbA1c has been steadily dropping.
 
Sorry to hear you’ve been having such a tough time with Metformin @maryjaneholland

Are you already on the slow-release version?

Was there a dose that was more tolerable? Eg 1500mg or 1000mg?

I think @Felinia ’s suggestion is a really good one. Perhaps there might be an additional med that could be paired with a reduced Met dose. Managing diabetes does involve some compromises, but at the end of the day, the side effects you are experiencing must be hugely reducing your quality of life, and that’s an important factor in the balance of choosing any medication.
 
@JITR @Felinia @everydayupsanddowns thanks for all your feedback and kind words, had imagined I would be banned for posting this on forum, but it does seem to be part of steep learning curve as Metformin is the first drug prescribed by GP's to lower blood glucose levels, yet I have been misinformed as GP told me if Metformin didn't work out, I would have to consider using Insulin and no other medications were mentioned or discussed, of course, ugh!

Yes it's the Sukkarto Metformin Extended Release on NHS Prescription (POM) which is slight improvement on the bog-standard (excuse the pun!) Metformin, but has still resulted in me buying 25 Kg sack of sodium bicarbonate, 5 Litre drums of concentrated white vinegar, bulk packs of laundry bleach (hydrogen peroxide mixed with ash) and soda crystals and Ecover laundry detergent for constant laundry loads due to my skin conditions (No I didn't attempt to squeeze crates of lemons for litres of lemon juice as natural cleaning product, phew!) and trying to manage all this on budget due to binning destroyed clothes and feeling like social leper, so ready for few changes as this process is both physically painful and completely unsustainable, obviously saying "No" enough times to friends going out equals social suicide, and being permanently unable to express your self via clothing is pretty depressing as I have some delicate vintage pieces which have been archived as they can't be constantly pummelled by modern washing machines without being ruined and ripped to shreds... Yes that's reference to the gross food poisoning scenes in comedy film "Bridesmaids"...

At one point I got lost in imagining I would reach say 40 on my HbA1C blood test and therefore be in remission and everything else would magically fall into place and I would never need or take diabetes meds again, but the reality is the fluctuations and long-term maintaining weight management and lifestyle changes sustainably without harming your self.

Oh well, in the spirit of Red Nose Day and Comic Relief overcoming pain and rising above tragedy, the saga continues with *squinting* Britney Spears singing "Squeeze & Fart" accompanied by golden toilets, laxatives, douches, enemas, toilet seats, stool softener and decorated by toilet roll from that New York Drag Legend Sherry Vine, who has many talents including singing live about poop, making Youtube videos about toilet humour and performing live at Pride events going on about "golden showers" and she's turned 60 this year and still no shame, well Happy Birthday Lay-dee of the Night!!
 
I stopped taking the Metformin - just one tablet a day of the ordinary type made me totally despondent, but I got a lovely new carpet and upholstery cleaner out of the experience.
I had already removed high carb foods from my menu, but found I needed to do nothing else.
No meal replacement shakes or soups.
No counting calories.
No need to do low calorie anything.
No need for low fat options.
No need to go hungry.
Never a thought of surgery.
Never even thought about weightloss.
Didn't join a gym or schedule exercise.
And 80 days later I was no longer in the HbA1c range for diabetes. 6 months later my HbA1c was just in the normal range.
When the nurse insisted I be weighed, I had lost 90lb, without even trying.
It was so unbelievably easy I can only urge anyone diagnosed type2 to try it as if it works, it is a doddle.
 
OK sounds promising, can you clarify what you mean exactly by high carb foods? Specific percentage? How many grams of carbs per day can you have on your low carb diet? I really struggle with removing all carbs due to my dietary preferences of mostly vegetarian/vegan food where I have already given up worst high sugar processed foods and I can't get to grocery stores every day for freshest perishable foods like fresh fruit, fresh veg, fresh houmous, chilled goods, but it's really great to hear positive diabetes remission weight loss journey and very inspiring to motivate others through difficult period making big adjustments!

I am gradually making positive lifestyle changes and I do appreciate the feedback as I'm consciously choosing to let it all hang out there in public like dirty laundry (pun intended!), but the word "easy" grates slightly to describe weight management as that's the same tone used by NHS staff such as Diabetic Nurses and GP's who are processing patients like herding livestock and obviously what works for one person cannot automatically be directly applied to others with different metabolisms, hormone levels, body weight, BMI with massive variances and medical conditions, as seen in say different body types represented in the comedy film "Bridesmaids" featuring comedy geniuses Kristen Wiig, Maya Rudolph, Melissa McCarthy, Rebel Wilson and Wendi McLendon-Covey I fully relate to where "food poisoning" might as well be replaced with "Metformin" so another big dollop of Comic Relief for Red Nose Day, Splat!!
 
maryjaneholland said:
Specific percentage? How many grams of carbs per day can you have on your low carb diet? I really struggle with removing all carbs due to my dietary preferences of mostly vegetarian/vegan food
Click to expand...

@Drummer is very sensitive to carbs. From other posts, I think her preference is for foods under 10% carbohydrate as a guide. Not everyone on the forum who has success on a lower carb menu has to clamp down quite so hard, but it has been an extremely successful approach for @Drummer who essentially went back to Atkins that had helped in the past, and suited her metabolism way better than standard NHS dietary advice.

Lots of folks on the forum find success anywhere below 130g of carbs per day (which still allows quite a bit of flexibility). Some find 70, 80, or 90g is a better fit for them. It’s all very individual!

Good luck finding a veggie/vegan plan that works for you, and which you can sustain, and (importantly) is practical and affordable. 🙂
 
I assume you were already vegan before your diagnosis so are needing to make some changes that will be lower carb so as to be more suitable for managing blood glucose. I think it can be more tricky as the go to foods that are low carb o course are meat, fish, eggs, cheese but they are off your menu.
I found this link which may have some meals that suit you, https://www.eatingwell.com/gallery/7528012/low-carb-vegan-dinner-plan//. Though there are plenty of others of you search for low carb vegan recipes.
 
@Drummer @everydayupsanddowns thanks for the advice, I should have added that I am waiting to start the NHS remission programme delayed due to various personal problems I am resolving before I can commit to intensive weight loss in April and hoping to learn or re-learn about healthy eating to manage diabetes as it's very small steps of swapping out high carb foods for low carb foods, like no potato crisps but chopping up carrots and peppers and celery into sticks for dipping into cottage cheese or houmous, instead of high calorie mayonnaise-type dips, roast veg instead of potato chips, falafel salad bowl instead of falafel flatbread wrap, and yes making it sustainable, as the dark unhealthy loop of forcing my self to take high dose of Metformin, then doing laundry loads, then binning wrecked clothes, then going to shops and Pharmacists to start same exhausting process all over again has destroyed my quality of life, but I'm not anti-meds or encouraging anyone to refuse Metformin as it's obviously healthier to find right dosage which suits you personally...

I really like the idea of tailoring diabetes healthcare and treatment to my individual needs which are unique to me, like requesting bespoke hand-made outfit made-to-measure for the exact dimensions of your body, so go on then one more fave "poop joke" video clip from politically incorrect comedy film from same filmmaking brothers behind "Scary Movie" franchise, but they really wanted to push all the buttons with "White Chicks" so easy on the cheese bro, damn! 😉
 
@Leadinglights thanks for low carb vegan meal plan link, yes I need to educate my self more and read up on more vegetarian/vegan cookery books with new perspective of looking for lower carb options and just learn from failed attempts at say grocery shopping at budget supermarkets for my new low sugar low carb low calorie healthy vegan diet, which was also an exercise in self-restraint and self-discipline and exercising strong willpower as the entire food store has been designed to push and promote the most unhealthy addictive highly processed junkfoods which most likely are creating the "lifestyle condition" epidemic of diabetes, obesity, heart conditions and diseases reported in the press, but remission is my big goal and I want to prove to my self I can manage my diabetes and attain healthy weight...

I donated the in-date unhealthy (for me) foods from my kitchen to foodbank and had to bin the nearly expired or out-of-date junk foods in my kitchen not accepted anywhere as part of this process of making new decisions about what healthy diet looks like for me, and sure new appliances like new cooker and eventually new kitchen will make this process easier, and favourite dish of mine with many variations has always been Asian-style veg and tofu stir fry with authentic ingredients from cash & carry stores as tofu is not pretending to be "fake meat" - it's traditional protein source in it's own right with long culinary history in many Asian/Far East countries and an infinite variety of recipes too! 🙂
 
maryjaneholland said:
@Leadinglights thanks for low carb vegan meal plan link, yes I need to educate my self more and read up on more vegetarian/vegan cookery books with new perspective of looking for lower carb options and just learn from failed attempts at say grocery shopping at budget supermarkets for my new low sugar low carb low calorie healthy vegan diet, which was also an exercise in self-restraint and self-discipline and exercising strong willpower as the entire food store has been designed to push and promote the most unhealthy addictive highly processed junkfoods which most likely are creating the "lifestyle condition" epidemic of diabetes, obesity, heart conditions and diseases reported in the press, but remission is my big goal and I want to prove to my self I can manage my diabetes and attain healthy weight...

I donated the in-date unhealthy (for me) foods from my kitchen to foodbank and had to bin the nearly expired or out-of-date junk foods in my kitchen not accepted anywhere as part of this process of making new decisions about what healthy diet looks like for me, and sure new appliances like new cooker and eventually new kitchen will make this process easier, and favourite dish of mine with many variations has always been Asian-style veg and tofu stir fry with authentic ingredients from cash & carry stores as tofu is not pretending to be "fake meat" - it's traditional protein source in it's own right with long culinary history in many Asian/Far East countries and an infinite variety of recipes too! 🙂
Click to expand...
Agreed, my daughter is vegetarian and can't bear the 'look alike meat'. Well done to have a clear out, it is a good start.
 
I was going to suggest soups & shakes as a way to get your sugar levels down fast but that's your plan. Meanwhile have you considered plant protein powder? I've found protein is the name of the game to a large extent. Data shows people who focus on protein tend to eat significantly less overall than people who don't.

Did you know scientists have found Metformin works by interacting with your digestive system? You probably don't need to be told that, but you should reduce the dose.
 
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@JITR Thanks for good suggestions, yes I need to rethink amount of protein in my diet as overall for health reasons (risk of heart conditions) I'm trying to reduce dairy products and saturated fats in my diet, so need more plant-based sources of protein and minerals, I remember in the past when my life was simpler and not ruled by complex health issues, I would make healthy smoothies with bananas and almond milk and hemp protein powder and various superfood/supplement ingredients as I was cycling every single day, and there are many vegan wholefood sources of protein such as nuts, seeds, beans, lentils, peas, nut butters, wholegrains (measuring carbs), staples like chickpeas, tahini, tofu, tempeh, edamame, seitan, houmous and falafel...

Metformin working hard on my digestive system seems to weaponise "pro-biotic" yoghurts like Activia, so one more food item with sugars I can no longer have, but have you heard of new bacteria-filled product called Fecalux, it's the sh*t?! :D
 
Faecal implants are being given to people who have had their own gut bacteria wiped out by intense antibiotic treatment for things like sepsis, c. diff etc. Supposed to be very effective at restoring the gut flora.
Just like using maggots for severe wound infection, sounds horrible but can be life saving.

I really do think the side effects some people get means the 'cure' is worse than the disease.

I'm afraid I find if some medication makes me feel worse than before then I don't take it.
 
@maryjaneholland
Will look at Fecalux. Tim Spector may have something about it on Zoe. Leadinglights, thank you.

You might find this article interesting if you haven't seen it:
www.healthline.com

Diabetes Medication Metformin: Why Patients Stop Taking It

Researchers say metformin has the lowest adherence rate of any major diabetes drug. However, patients say there are ways to improve that percentage.
www.healthline.com www.healthline.com
 
everydayupsanddowns said:
@Drummer is very sensitive to carbs. From other posts, I think her preference is for foods under 10% carbohydrate as a guide.
Click to expand...

Slightly foxed by 10% carbohydrate! Am I right in thinking a raw potato would be 17.5% - given USDA says:

Carbohydrate, by difference17.5 g/100g
Water79.2g/100g
 
maryjaneholland said:
OK sounds promising, can you clarify what you mean exactly by high carb foods? Specific percentage? How many grams of carbs per day can you have on your low carb diet? I really struggle with removing all carbs due to my dietary preferences of mostly vegetarian/vegan food where I have already given up worst high sugar processed foods and I can't get to grocery stores every day for freshest perishable foods like fresh fruit, fresh veg, fresh houmous, chilled goods, but it's really great to hear positive diabetes remission weight loss journey and very inspiring to motivate others through difficult period making big adjustments!

I am gradually making positive lifestyle changes and I do appreciate the feedback as I'm consciously choosing to let it all hang out there in public like dirty laundry (pun intended!), but the word "easy" grates slightly to describe weight management as that's the same tone used by NHS staff such as Diabetic Nurses and GP's who are processing patients like herding livestock and obviously what works for one person cannot automatically be directly applied to others with different metabolisms, hormone levels, body weight, BMI with massive variances and medical conditions, as seen in say different body types represented in the comedy film "Bridesmaids" featuring comedy geniuses Kristen Wiig, Maya Rudolph, Melissa McCarthy, Rebel Wilson and Wendi McLendon-Covey I fully relate to where "food poisoning" might as well be replaced with "Metformin" so another big dollop of Comic Relief for Red Nose Day, Splat!!
Click to expand...
Most people find that their reaction to foods varies a little from that of others - I discovered that I can extract more carbs from peas and beans than are listed for them, by using a blood glucose tester.
You really do not need to remove all carbs from your diet - I was left for a decade after a test showing high blood glucose as the clinic got around the problem by stopping doing the test and I was unaware of the 'flag' as I didn't see my test results until after diagnosis, some 15 years after the fact. One reason, I suspect, for my sensitivity to carbs.
If you can replace or reduce the highest carb foods, use swede, cauliflower or other low carb veges instead of potato, parsnip and the like and make your own cake and buns from recipes available on the internet lowcarblondoner has a good selection, though I am not sure if there are vegan ones, but vegetarian options are possible I'm sure.
I struggled under the demands of people who should have known better to follow the high carb low fat low calorie regime they insisted would cause weightloss if only I would follow the instructions - as if I was not in front of them grey faced and fainting from lack of nourishment.
At diagnosis I was huge - I refused to weigh myself or be weighed - so I was puzzled when my clothes began to slide south. I thought that the elastic must have failed. I had actually lost 12 inches off my waist.
I set a limit of 10% carbs on foods I eat every day, I have some dark chocolate, the highest percentage cocoa I can find, which is higher, but I don't eat it every day even though I have bars in the fridge. I have just one square when I think about it.
When I was starting out I set about being below 8mmol/l at the 2 hour mark after meals. Once I was seeing 7's all the time I stuck to those meals, but my levels continued to go down. I think that my metabolism recovered once the burden of too many carbs was lifted. In 80 days I was no longer in the diabetes range for HbA1c and at 6 months just at the top of normal. I felt that I'd lost a couple of decades of aging by then.
I can't help but make light of my reversal as I set out with grim determination to see out the next five years of struggle and hard graft, and found I'd defeated diabetes with the ease of an aikido master.
 
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I have IBS and lactose intolerance, so I understand the toilet problems. I am fine with Metformin SR. I try to stay under 130g carbs per day. It was working for me. I can't understand why your GP is still making you take them. Has he given a reason? It's really not fair on you
 
I have IBD (Crohn’s) so the metformin route was never an option for me. My GP spent a long time looking up the side effects of other appropriate drugs and eventually went for Sitagliptin. I’ve never had a single side effect from it. There are other drugs out there but you need to tell your GP just how bad your side effects are.

On your other point. I’ve reduced my HbA1c to normal levels, lost seven stone and feel fantastic. I’ve not been near a soup, shake or a surgeons knife. No shortcuts here, just a sensible low carb eating plan.
 
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