Gave up metformin - got my life back

[fbirder]

After 7 months on metformin SR and huge problems with diarrhoea I gave up in October. My HbA1c had dropped from 9.9 to 6.8 over the first three months but, after then, my fasting CBG had changed not one jot. It seemed that it was making no positive difference at all.

The gut problems were so bad that I just couldn't commit to anything in advance. Then three vital things were scheduled for November and December that I really, really couldn't miss. So I decided to stop the tablets. Straight away two things happened - my bowel habits returned to normal and my fasting CBG started to go up. But it dropped back down after a week.

Now, three months later, my HbA1c is down to 6.4 - so I'm off the metformin for the foreseeable future.

I wish I'd never been given it and that we'd tried seeing what weight loss (12 kg lost by calorie counting) and exercise alone could do. That way I wouldn't have had a totally ruined summer.

 

[Prem51]

Hi @fbirder on your first post. i'm sorry to hear you had such a bad time on metafornin. Some people on here find it helps, but it does seem to cause problems for others.
Weight loss and exercise has worked for a lot of us on here, and many of us follow a Low Carbohydrate High Fat (LCHF) approach to eating.
Have a read round the threads to see how it works, and ask any questions you want to. Next summer should be better!

 

[MMcNiel]

- BAD REACTION to METFORMIN

- I have had ME for many years which gives me a chemical sensitivity and was diagnosed with type II diabetes in October 2016

I am on the 500 mg tablets of Metformin, whose active agent is Metformin hydrochloride (hence the chemical sensitivity). I'm aware there is a slow release version but in my case after taking Metformin for four or five days, I suddenly have bad aching around the shoulders downwards in my body and also a severe lethargy.

- I am in my mid-60s and have never smoked and don't drink any alcohol.

- I have also experienced exactly the same bad reaction after 4 or five days to 15 mg tablets of Pioglitazone, whose active agent is Pioglitazone hydrochloride. So far I have not found any helpful advice from the diabetes.org.UK headquarters.

- The only medication which is not producing a bad reaction is 5 mg tablets of linagliptin (which is its active ingredient) marketed under the tradename of Trajenta

-

- I would be very grateful if you or any other members that you know, could give me some helpful feedback and suggestions on how to tackle this

 

[ME_Valentijn]

- I have had ME for many years which gives me a chemical sensitivity and was diagnosed with type II diabetes in October 2016

I am on the 500 mg tablets of Metformin, whose active agent is Metformin hydrochloride (hence the chemical sensitivity). I'm aware there is a slow release version but in my case after taking Metformin for four or five days, I suddenly have bad aching around the shoulders downwards in my body and also a severe lethargy.

I also have ME/CFS, and had intermittent burning on my outer arms at 500mg of Metformin. When my GP upped it to 1000mg, I got constant symptoms of lactic acidosis which got quite a bit worse for several days until I stopped taking it. I also had full-body coldness, aching and burning muscles, muscle twitching, and a horrible headache.

Most symptoms receded about 12 hours after stopping the metformin, but the headache lingered a few more days with the feeling that my brain had been dipped in acid. And my shoulders are still weak and start burning again with very minimal use, 2 weeks after stopping it. The insert for metformin says to stop taking it and call your doctor if getting any of the lactic acidosis symptoms, and I'd take that very seriously. It's not a "push through it" symptom like the GI stuff, but something which can be pretty dangerous.

On a large ME forum, I found about 10 patients who had mentioned taking it, and all but 1 of them had to stop taking it due to those symptoms, and/or making ME symptoms worse.

 

[MMcNiel]

After 7 months on metformin SR and huge problems with diarrhoea I gave up in October. My HbA1c had dropped from 9.9 to 6.8 over the first three months but, after then, my fasting CBG had changed not one jot. It seemed that it was making no positive difference at all.

The gut problems were so bad that I just couldn't commit to anything in advance. Then three vital things were scheduled for November and December that I really, really couldn't miss. So I decided to stop the tablets. Straight away two things happened - my bowel habits returned to normal and my fasting CBG started to go up. But it dropped back down after a week.

Now, three months later, my HbA1c is down to 6.4 - so I'm off the metformin for the foreseeable future.

I wish I'd never been given it and that we'd tried seeing what weight loss (12 kg lost by calorie counting) and exercise alone could do. That way I wouldn't have had a totally ruined summer.

I also have ME/CFS, and had intermittent burning on my outer arms at 500mg of Metformin. When my GP upped it to 1000mg, I got constant symptoms of lactic acidosis which got quite a bit worse for several days until I stopped taking it. I also had full-body coldness, aching and burning muscles, muscle twitching, and a horrible headache.

Most symptoms receded about 12 hours after stopping the metformin, but the headache lingered a few more days with the feeling that my brain had been dipped in acid. And my shoulders are still weak and start burning again with very minimal use, 2 weeks after stopping it. The insert for metformin says to stop taking it and call your doctor if getting any of the lactic acidosis symptoms, and I'd take that very seriously. It's not a "push through it" symptom like the GI stuff, but something which can be pretty dangerous.

On a large ME forum, I found about 10 patients who had mentioned taking it, and all but 1 of them had to stop taking it due to those symptoms, and/or making ME symptoms worse.

 

[MMcNiel]

thank you for your quick response. Apart from losing weight, what other methods or medication would you suggest to stimulate insulin production and lower blood sugar levels?

 

[ME_Valentijn]

thank you for your quick response. Apart from losing weight, what other methods or medication would you suggest to stimulate insulin production and lower blood sugar levels?

When it comes to Diabetes, I'm a newbie too. But I think it really depends upon whether your pancreas is able to produce enough insulin. Since I can't take Metformin, my GP has me up to 120mg of Gliclazide now. Doesn't seem to be doing much yet. If someone can't produce enough insulin even with help from drugs like Gliclazide, that's when insulin injections are usually needed.

Normally people can also exercise more to help use up the excess glucose, but that's probably not an option for you, due to the ME. I've found it moderately helpful to reduce my carbs to around 20-30 per meal. It's gotten me out of the 13+ glucose range down to 7-11. But if I try to cut carbs further, it causes problems (I assume due to ME), and I get very weak and shaky, etc, even though blood glucose isn't getting low.

 

[Madyb]

After 7 months on metformin SR and huge problems with diarrhoea I gave up in October. My HbA1c had dropped from 9.9 to 6.8 over the first three months but, after then, my fasting CBG had changed not one jot. It seemed that it was making no positive difference at all.

The gut problems were so bad that I just couldn't commit to anything in advance. Then three vital things were scheduled for November and December that I really, really couldn't miss. So I decided to stop the tablets. Straight away two things happened - my bowel habits returned to normal and my fasting CBG started to go up. But it dropped back down after a week.

Now, three months later, my HbA1c is down to 6.4 - so I'm off the metformin for the foreseeable future.

I wish I'd never been given it and that we'd tried seeing what weight loss (12 kg lost by calorie counting) and exercise alone could do. That way I wouldn't have had a totally ruined summer.

I have just randomly joined,can I say ,so pleased that someone else has been going through the same sole distroying problems with this drug,I cam off it 8 weeks ago ,and my life has changed,from having diahrrea 3 or more times a day ,to now nothing,I told my gp I was coming off it as a trial, and it worked,I was only taking 1 per day,I'm now on another one and that seems to be ok,fingers crossed....

 

[Madyb]

Hi @fbirder on your first post. i'm sorry to hear you had such a bad time on metafornin. Some people on here find it helps, but it does seem to cause problems for others.
Weight loss and exercise has worked for a lot of us on here, and many of us follow a Low Carbohydrate High Fat (LCHF) approach to eating.
Have a read round the threads to see how it works, and ask any questions you want to. Next summer should be better!

Is that the Atkins diet.

 

[Andydragon]

I have just randomly joined,can I say ,so pleased that someone else has been going through the same sole distroying problems with this drug,I cam off it 8 weeks ago ,and my life has changed,from having diahrrea 3 or more times a day ,to now nothing,I told my gp I was coming off it as a trial, and it worked,I was only taking 1 per day,I'm now on another one and that seems to be ok,fingers crossed....

You replied to a thread that was over 4 years old so probably not likely to get much response, although I realise I have... ahem

glad you found an alternative that works for you. Metformin is good for many people but if it doesn’t work then you should certainly not suffer and find alternatives

 

[Resurgam]

I eat what is basically the Atkins diet - and I had horrible side effects with Metformin and Atorvastatin.

 

[Prem51]

Is that the Atkins diet.

Welcome to the forum @Madyb !
I think the Atkins diet suggests eating more protein (rather than healthy fats) to replace the energy from cutting carbs.

 

[EllieM]

Is that the Atkins diet.

Hi and welcome to the forums. A low carb diet isn't the same as a zero carb or keto diet, it just means that your have less than 100g or 150g per day. (So you count carbs rather than calories). If you get a blood testing meter you can work out what your own body can tolerate in the way of carbs - some people have to go virtually keto ie less than 20g a day, others can manage 150g.

 

[mdmm55]

Dear friend.
I am, Type2 on Metformin (Janument Tablets (B.D) in Canada. Facing digestive problems and severe fatigue and muscle pain.Are these due to full Metofrmin dosage, I am using ??
You wrote that you have stopped using Metform.Then what else tablets are you using now in place of Metformin and how is your experience with this new medicine ???
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After 7 months on metformin SR and huge problems with diarrhoea I gave up in October. My HbA1c had dropped from 9.9 to 6.8 over the first three months but, after then, my fasting CBG had changed not one jot. It seemed that it was making no positive difference at all.

The gut problems were so bad that I just couldn't commit to anything in advance. Then three vital things were scheduled for November and December that I really, really couldn't miss. So I decided to stop the tablets. Straight away two things happened - my bowel habits returned to normal and my fasting CBG started to go up. But it dropped back down after a week.

Now, three months later, my HbA1c is down to 6.4 - so I'm off the metformin for the foreseeable future.

I wish I'd never been given it and that we'd tried seeing what weight loss (12 kg lost by calorie counting) and exercise alone could do. That way I wouldn't have had a totally ruined summer.

 

[Minalo1]

After 7 months on metformin SR and huge problems with diarrhoea I gave up in October. My HbA1c had dropped from 9.9 to 6.8 over the first three months but, after then, my fasting CBG had changed not one jot. It seemed that it was making no positive difference at all.

The gut problems were so bad that I just couldn't commit to anything in advance. Then three vital things were scheduled for November and December that I really, really couldn't miss. So I decided to stop the tablets. Straight away two things happened - my bowel habits returned to normal and my fasting CBG started to go up. But it dropped back down after a week.

Now, three months later, my HbA1c is down to 6.4 - so I'm off the metformin for the foreseeable future.

I wish I'd never been given it and that we'd tried seeing what weight loss (12 kg lost by calorie counting) and exercise alone could do. That way I wouldn't have had a totally ruined summer.

Well done, I have just stopped the metaformin trots, not a medication for me, have been working with Trulicity, hopefully will work currently between averaging 10.5

 

[JoKalsbeek]

Well done, I have just stopped the metaformin trots, not a medication for me, have been working with Trulicity, hopefully will work currently between averaging 10.5

Hi @Minalo1 ,

You're responding to a thread that's a few years old, so you might not get a lot of feedback. A 10.5 average is still pretty high, and metformin wasn't likely to make much of a dent in that anyway. (It makes our liver dump less glucose, and makes us a smidge more insulin sensitive, but it doesn't really do anything about what we ingest.) I'm not familiar with trulicity myself, but I gather it does the same gliclazide does? In any case, if you want to further lower your blood glucose to levels that don't cause complications later on, https://josekalsbeek.blogspot.com/2019/11/the-nutritional-thingy.html might help some. It's basically what i did, when metformin also really, REALLY wasn't the way forward for me either. But do test a lot, if you give it a go, as you might hypo when combining this with Trulicity.

If you have any questions, feel free to start a thread of your own. There's always someone around with answers.
Good luck,
Jo