ME and Metformin

AndyPandy

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I recently read some articles online about Metformin having an adverse impact on mitochondria and ATP as well as impacting on the gut. Sorry I don't have the references. Lack of energy, fatigue, muscle weakness and gut issues are major symptoms for me and my ME.

I've also recently read a number of diabetic patient posts on various forums claiming to have suffered muscle fatigue, weakness and gut issues after taking Metformin.

My history is that I am a skinny type 2 diabetic who started taking Metformin in around March of 2011. After starting Metformin I noticed a lack of muscle strength during weight training at the gym and a lack of muscle strength when bushwalking and cycling. Nothing as bad as I am now, but noticeable. I asked my GP at the time whether Metformin might be causing it but she said no.

A few months after this I took statins which had a catastrophic effect on me and I believe contributed significantly to the development of severe ME.

Around this same period of time my diabetes was harder to manage and I was prescribed higher doses of Metformin to control my diabetes.

Fast forward 5 years and I have been able to reduce the dose of Metformin. I am also more active than 5 years ago but still significantly impaired. I can walk a few steps but any further requires a wheelchair.

Today I spoke to the Endocrinologist about the possible link between Metformin and muscle weakness, fatigue and gut problems. She didn't comment on the theory but is happy for me to try stopping Metformin and seeing what happens. Apparently you don't have to titrate down and it lasts 72 hours in the system.

I don't know what the outcome will be but I think it is worth a try. My body really doesn't cope with medications and I am very reactive. Metformin may be more of a problem than I realised.

There is a risk that my blood sugar levels will shoot up. I will have to be super careful with my diet. But if I limit carbs too much and can't make up for it with healthy fats then I will lose weight (which I can't afford to do).

Hopefully it might lead to me being more active and not needing diabetic medication at all. Who knows! If it doesn't go well she suggested trying other forms of diabetic medications.

I am tagging you @alex3619 because I remember you writing that you are on Metformin and declining over time.

I will keep everyone posted on my experiment!

Best wishes Andy
 

alex3619

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My 2002 decline was after a period on Metformin. Its hard to say if it was the cause though. I have been off and on Metformin a few times. I don't know that it helps or hurts, but we just don't have any definitive answers I think. Which means that if you respond badly while on Metformin it might be a good idea to start asking questions and consider options.

I find blood pressure lowering medication to be damaging, but I am stuck on them for now.
 

AndyPandy

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I also asked about getting a script for testing strips after 1 January 2017 but she said because I am a type 2 diabetic I will have to pay for them.

This is a recent federal government "initiative" in Australia designed to save money. Up until recently all diabetics could get testing strips at a subsidised rate. I was paying about $16.00 for a box of 100. Part of the reason why I have good control of my BGLs is through frequent testing. I think the full price for a box will be about $70 - $80 dollars but I might be wrong about that.

Type 1 diabetics will still be able to get testing strips at the subsidised rate. Type 2 diabetics will have to pay the full amount or wait and see what their Hba1c results are every 3 to 6 months (which are just an average and don't show the peaks in BGLs which cause the damage).
 

daisybell

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@AndyPandy my dad is a type 2 diabetic - skinny also. He has had long-standing problems with muscle wasting - pre-diabetes... much worsened by statins, which he stopped taking, and he has now been diagnosed with a specific myositis. I wonder how many people there are with auto-immune issues who are damaged by statins, and then find muscle problems worsened by developing diabetes and taking metformin.....
 

Mary

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@AndyPandy - it's really unfortunate but a large percentage of doctors are ignorant about "side" (actual) effects of drugs and a majority of doctors don't believe patients who report them or discount their experience. Any time I take a drug I look it up myself and don't rely on the doctor or even the pharmacist. I think if doctors really knew what the effects of the drugs they prescribe are, there would be much fewer statins and antidepressants handed out, to name a few.

Yes, Metaformin can cause severe fatigue, muscle weakness and gut problems. This link talks about how it can cause lactic acidosis, one of the symptoms of which is fatigue: http://www.medicinenet.com/metformin-oral/article.htm Interestingly, thiamine has been shown to help reverse lactic acidosis: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3388689/

And even more interestingly, thiamine has been shown to be deficient in diabetics and benfotiamine in particular has been shown to help alleviate or prevent several complications of diabetes. http://www.lifeextension.com/magazi...on-High-Blood-Sugar-With-Benfotiamine/Page-01

So you if you're not taking thiamine already, I'd urge you to look into it.

About 10 years ago my doctor recommended I take Metaformin - my blood sugar was just above the normal range, 105 I think. I read about Metaformin and its side effects and didn't want to take it, so I became very strict about my diet, looked at everything I was eating, and got it back in the normal range without the drug. I'm still strict because though in the normal range, my level is still high-normal 97 or so - all I can figure is it is from lack of exercise, which I can't do because to PEM, but at least I'm keeping it in range.

Good luck!
 

Art Vandelay

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I decided to go off metformin recently. I wasn't a type 2 diabetic but was severely insulin resistant so my previous doctor suggested it many years ago. I'm also quite skinny and have lost weight over the years.

I maintain a low carb diet and have found that my blood glucose levels aren't too different now that I've stopped taking metformin. (sidenote: I found some cheaper options for testing strips on ebay from South Korea and they seemed genuine).

I am due to have a HbA1c test shortly to double check the effects of being metformin-free. I think my cholesterol may have increased as a result of not taking it (but I'm not convinced high cholesterol is as much of a problem as the medical community claims it is).
 
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taniaaust1

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I also asked about getting a script for testing strips after 1 January 2017 but she said because I am a type 2 diabetic I will have to pay for them.

This is a recent federal government "initiative" in Australia designed to save money. Up until recently all diabetics could get testing strips at a subsidised rate. I was paying about $16.00 for a box of 100. Part of the reason why I have good control of my BGLs is through frequent testing. I think the full price for a box will be about $70 - $80 dollars but I might be wrong about that.

Type 1 diabetics will still be able to get testing strips at the subsidised rate. Type 2 diabetics will have to pay the full amount or wait and see what their Hba1c results are every 3 to 6 months (which are just an average and don't show the peaks in BGLs which cause the damage).
good old aussie gov health cut backs :rolleyes: , ts just another form of discrimination here where some will get the drugs they need subsidised while others dont.

Unfortunately Ive been having to pay for my glucose test strips since Ive been having to test at times (past 2-3 years) as our health system didnt cover those who get severe hypoglycemia (mine can fall down to 2.2) and blood sugar swings (in 13 range)

Mine does also swing into the diabetic diagnoses range but cause my inability to get to drs and it only goes into that range with some diet breaches I havent got a diabetic diagnoses. My specialist though told me to get a blood sugar monitor and take mine at times when I think its my sugar causing an issue as it then does help me know what is going on. I was put on a stricter then a normal diabetic diet to keep things in control.

2-3 doctors have spoken about me possibly going onto metformin in the past due to my rising sugar issues (over time Im getting higher and higher swings) and the hyperinsulinemia I have but Im very wary of this drug as it apparently affects mitochrondria and Im 100% sure I already have mito problems. Maybe I will trial metformin some time but I cant see myself doing that unless my sugar gets worst then it is now and even then Im going to still reluctant as Im so doubtful I'll be able to take it without adverse affects.

statins I cant take at all, I lasted something like 24-36hrs on one of them cause it caused me such brain issues that I couldnt even pour myself a hot drink as I kept missing the cup and then had boiling water going everywhere. Messes dramatically with coordination and caused me major brain fog. They too affect mito, so my very high chlosterol is left untreated.

best luck andypandy with your cut out metaformin, I dont think its a good drug for anyone with ME. Have you considered an stricter diet for the diabetes then you are on now... (my specialist had me cut out so many things to try to deal with my issue with diet alone. I had my sugar still raising when I was still thin so I havent noticed my weigh making much difference with a weight gain but certainly the very strict diet is helping me).
 

adelheid55

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My daughter has an Insulin resistance and had to take Metformin. We searched the net about alternatives and found that inositol might be tried without having all the bad side effects. She hasn't been tested since so I don't know whether ist's OK.
And we searched German Websites. But perhaps this will be an altenative for you too.
 

AndyPandy

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Just an update on my situation after giving up Metformin.

So there haven't been any miracles in terms of fatigue, weakness or muscle function. Maybe some slight improvements. However, my gut seems much better without it. Nausea only occasional now instead of very frequent. Bowel movements more solid.

I am doing very well on a very low carb diet. My endocrinologist and dietician were sceptical about it working but I have stuck to it pretty closely. My endocrinologist said people generally can't stick to these diets and the dietician said she'd never had anyone on such a low carb diet. I had some problems with higher BGLs with dental infections, viruses, gluten loading (therefore carb loading) prior to endoscopy but otherwise I am doing well.

I have had to pay for lots of testing strips so I could determine the amounts of carb I can eat, but it has been worth it. Both the endocrinologist and dietician are astonished (and happy) with the results.

If I am not careful I can still hit some nasty highs eg 19.4 after a laksa where I hardly ate any noodles but I think the soup was loaded with sugar. I do best when I combine small amounts of carb with protein.

The low carb is also probably helping with my recent diagnosis of low digestive enzymes - maltase, sucrase and lactase.

At the moment I am pretty inactive. If I become more active I will need to adjust the amount of carbs I am taking in.
 

Valentijn

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I've been injecting Victoza, and it allows me to eat somewhat normally. My fasting is always high, typically at 8-9 (140-165) but consistently staying between 7-10 (125-180) - unless I first eat and test near noon or have an infection. But even eating low-carb didn't help with my fasting values at all.

I asked my ME doctor to have C-peptide tested a few months ago since the Dutch system won't do it, and it was elevated. Which indicates that I'm over-producing insulin, and could indicate insulin resistance or some other problem with cellular uptake. My diet has never been high-carb, as you'd expect with diet-induced insulin resistance. In fact, after onset of both ME and diabetes, different nutritionists thought I should at least double my intake of carbohydrates :jaw-drop: I ignored both of them :D
 

AndyPandy

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Forgot to mention I put on a bit of weight after coming off Metformin. A good thing as I was struggling to keep my weight up while I was on it. I'm still a very healthy weight and feel better for it.
 

Valentijn

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Forgot to mention I put on a bit of weight after coming off Metformin. A good thing as I was struggling to keep my weight up while I was on it. I'm still a very healthy weight and feel better for it.
Yes, I very much suspect that the highly touted weight loss benefits claimed by the manufacturers are entirely due to the extremely common side-effect of diarrhea. Not that doctors seem to care :p
 
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I recently read some articles online about Metformin having an adverse impact on mitochondria and ATP as well as impacting on the gut. Sorry I don't have the references. Lack of energy, fatigue, muscle weakness and gut issues are major symptoms for me and my ME.
est wishes Andy
Hi AndyPandy, Metformin is an interesting drug and how it works to control glucose levels in diabetics is still somewhat unclear. Initially it was thought that metformin was able to reduce blood glucose by inhibiting glucose production in the liver. However, more recently it has been proposed to inhibit energy production (ATP synthesis) in the mitochondria. Oxidative phosphorylation uses oxygen to 'burn' pyruvate, amino acids and/or fatty acids in mitochondria to generate energy in the form of ATP. Significant amounts of energy (ATP) are required to drive normal tissue functions and so any inhibition of oxidative phosphorylation in the mitochondria could impact on energy levels. Metformin has been suggested to inhibit oxidative phosphorylation and so lower ATP levels in cells. Our cells are able to 'sense' the decrease in ATP levels and they respond by increasing scavenging pathways (triggered by the activation of a protein called AMPK) that use alternative fuel sources for energy production.

For most diabetic patients treated with metformin, this is not a problem. In fact, the ability of metformin to inhibit oxidative phosphorylation actually helps in controlling glucose metabolism. However, it is possible that some people may have an underlying problem in how energy is generated by oxidative phosphorylation in their mitochondria. In such cases, a further decrease in mitochondrial energy production by metformin causes a tipping point where there is insufficient energy production which in turn causes muscle weakness and rapid onset of fatigue following exercise. Thus, someone with CFS/ME may actually do very poorly on metformin. But you raise an interesting question...........

QUESTION: how many CFS/ME people here at PR have found that metformin increases, decreases or does not affect their symptoms??

Anyway, as a CFS/ME person with decreased mitochondrial function, you may be particularly sensitive to metformin and so lower doses may be appropriate and sufficient for controlling glucose levels. Perhaps slow-release metformin formulations may help. In some cases, slow-release metoformin has been found to reduce gut side-effects.Chat with your doctor.

More recently, metformin has been suggested to reduce the incidence of some cancers. Long-term use of metformin in diabetics has been shown to decrease the incidence of some cancers up to nearly 40%.

food for thought....

rodger
 

Valentijn

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QUESTION: how many CFS/ME people here at PR have found that metformin increases, decreases or does not affect their symptoms??
I searched for posts mentioning the drug when I started taking it. I found about a dozen people who had taken it, all but one or two of whom had stopped it due to side-effects, primarily making ME symptoms a bit worse. At the time, none had an extreme reaction like I eventually did (lactic acidosis), though since then there's been a new person on the forum who mentioned a similar reaction. One other patient also stopped taking it, but not due to symptoms, and I'm not sure if there's anyone on this forum who has stayed on it.

In my case, it might have been exacerbated by taking another drug which can also interfere with mitochondria. And the metformin itself caused severe diarrhea, and the resulting dehydration may have concentrated lactic acid even further. My blood sugar was very high at diagnosis (I later discovered patients should be sent to the hospital when it's that bad), and I also had moderate-large amounts of ketones in my urine. So I was probably being hit by a mild ketoacidosis as well.

It was pretty much a perfect storm of acidosis from ME, metformin, an antibiotic, elevated ketones, and dehydration. Complicated by an incompetent GP who thinks a new onset of Type 2 Diabetes is never a problem, and that I shouldn't even be testing my blood sugar, never mind urine ketones. And she was working from an official Dutch guide which both minimizes problems in Type 2 (there seems to be an inherent assumption that acute hyperglycemia can't get bad enough to cause problems), and was far too long and complex for a GP to use, so she missed the one bit that mentions sending people to the hospital if blood sugar is too high at diagnosis.
Perhaps slow-release metformin formulations may help.
I doubt it would help with the metformin interfering with mitochondria, especially since my metformin side effects didn't wax and wane depending on when I took it. Ultimately it would still be doing the same amount of damage. And in any event, slow-release is literally not available in the Netherlands. "Cheap" isn't good enough to put a useful drug into the Dutch system, if there's a less useful version which is even cheaper.
 
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I searched for posts mentioning the drug when I started taking it. I found about a dozen people who had taken it, all but one or two of whom had stopped it due to side-effects, primarily making ME symptoms a bit worse. At the time, none had an extreme reaction like I eventually did (lactic acidosis), though since then there's been a new person on the forum who mentioned a similar reaction. One other patient also stopped taking it, but not due to symptoms, and I'm not sure if there's anyone on this forum who has stayed on it..
Thanks Valentijn! Much appreciated!!
 

Mel9

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I am relapsing badly this year and have just discovered this thread. From today I am going to stop taking Metformin (prescribed in January for mild insulin resistance) and see if that helps.
 

brenda

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Hi

I had hoped that the AIP low carb high fat diet would help my diabetes and it did - HBA1c went from 7.1 to 6.2 in a year. I did lost some weight but it had stalled and my thyroid was not happy with low carb. Controlling sugar levels is only half of the story however.

I recently watched the iThrive docuseries and learned that insulin resistance is the problem that needs to be addressed and it is fat not sugar that is the problem, in that fat is being stored in the cells and causes the insulin receptors to fail.

The answer is a plant based whole food vegan diet with no oil (fats from seeds and adocado only) no sugar and no salt and wow you should see the miraculous effects on some who were morbidly obese with diabetic complications, as their weight just melts off, and they get off insulin some within a few months. They can eat fruit again and do not have to watch their diet as before, just get used to this way of eating. They are losing up to 100 lbs in a year.

Kicking the addiction to food does not take long - it took me less that a week to kick a really bad addiction to sugar and I have no cravings now after 10 days.

Already my fasting BG is going down - 6.0 is the lowest I have recorded in over 2 years. The taste buds change quite quickly and I am much happier eating complex carbs that a meat based diet, which incidently makes insulin resistance worse and eventually causes kidney problems. My weight is going even though it was resistant on other diets. No figures - I don't get ont he scales.

There are loads of clinical trials to back this all up.