Type 1 Lifer being put on Metformin

[alisonhe]

Sorry, just a quick response as I am aware that we are moving off thread topic....

.... I would be very glad to show you my food diary (for a week, fortnight, a month?!) but I really, truly tried - I was so miserable when I started on Insulin and gained 10kg (?!??!!!) I went low carb (i.e. less than 20g) and low calorie at the same time (restricting myself to 1,200 calories) took up resistance training and .... nothing worked. I then took some advice from this forum, changed my proportions so I was eating more fat (nuts, oils, avocado) and less protein, still restricting my carbs (although this meant that my calorie count went up to about 1,500).... nothing. I am still a blob. On the plus side, all those squats and lunges have given me a perkier bottom

Has your thyroid been tested?
I am reading the book sexy hormones by Lorna R. Vanderhaeghe, I wonder if the weight issue could be related to hormones and imbalances? may be worth trying - she talks about diet and lifestyle, and supplements to take to strengthen imbalances. I have never been able to eat much (but would like to) - I am short and stocky, I have always exercised quite a lot (I do Insanity workout 3-4 times a week now plus cycle to work and walk a bit), my thyroid has been borderline low for many years and the doctors always say I will need meds but with reading this book I am going to try a supplement suggested to see if that helps. A low carb diet should decrease your insulin need and losing weight should also help. They say that large doses of insulin causes extra fat to be stored. I recommend this book.

 

[sumolan]

Hi there, it's been a long time since I've visited the forum but i have a question that I'm hoping somebody may be able to help me with.

I've been a Type 1 diabetic for 40 years now (I'm 45) and recently suffered a heart attack (mid March) which required a stent. Ironically I'd already been working with my wonderful DSN for the previous year to lower my high HbA1c, lose weight with an LCHF diet and exercise but unbeknown to me I already had coronary heart disease.

After my heart attack I've been very motivated to bring my levels down and stabilise them (I'm on a pump) and be as healthy as i can. I went to see my consultant on 17th May and although my levels are stabilising, my HbA1c has reduced greatly and I've had no c-peptide tests he has decided that I've developed Type 2 on top of my Type 1 and has prescribed Metformin to be started 3 months on from the heart attack (so mid June). I feel really worried about this as I've never heard of a T1 having to go on this drug and i can find only limited info on it and it seems to be all doom and gloom (people dying of lactic acidosis, horrid side effects, etc). There's plenty of info on T2's on Metformin having to go on insulin but not the other way around and i can't seem to get an appointment to discuss it.

I'm really thinking of not taking it. My May HbA1c was 67 which I've got down from 83 and I'm still working on getting it in range and although I'm around 20lbs overweight it is slowly coming off! I can't understand the need????

Is there anybody out there with a similar experience?

i am type 1 diabetic 40 years the doctors put me on metformin as they said it would help keep my slightly high hba1c under control and it also helps me reduce the amount of background insulin needed.

 

[crushersmum]

My son was put on Metfomin when he was only 16 years old after being diagnosed with Type 1 aged 11. He was seriously underweight at the time ( due to poor control so bad it had stunted his growth) - The doctor at the time said she had been to a recent conference that said Metformin could be used to stabalise the cronically unstable T1s including in children!!! This despite the in pack instructions saying "not for children under 18" .
It made him more ill & he gave up almost instantly, but carried on lying to the hospital saying he was taking it so they kept sending him home with more tablets for the next year...
He finally escaped from the "childrens Death TRAP" that was the local children's diabetes team into the adolescent department and has recovered far more without the metformin.

 

[donnellysdogs]

My son was put on Metfomin when he was only 16 years old after being diagnosed with Type 1 aged 11. He was seriously underweight at the time ( due to poor control so bad it had stunted his growth) - The doctor at the time said she had been to a recent conference that said Metformin could be used to stabalise the cronically unstable T1s including in children!!! This despite the in pack instructions saying "not for children under 18" .
It made him more ill & he gave up almost instantly, but carried on lying to the hospital saying he was taking it so they kept sending him home with more tablets for the next year...
He finally escaped from the "childrens Death TRAP" that was the local children's diabetes team into the adolescent department and has recovered far more without the metformin.

I just can't fathom out why HCP's want to prescribe more and more drugs to a child?

Yep diabetes care is paramount but its so important to look outside the box so to speak..

 

[Ladybirdy75]

Well I'm one week in and............nausea, nausea and more nausea . No appetite whatsoever and having horrible eggy burps. Perhaps i need to go and ask about having the slower release ones? Been having loads of hypos so trying to basal test and adjust my pump settings accordingly. I think, at least now, it will most certainly reduce my daily totals. Will report back in a week

 

[Ladybirdy75]

My son was put on Metfomin when he was only 16 years old after being diagnosed with Type 1 aged 11. He was seriously underweight at the time ( due to poor control so bad it had stunted his growth) - The doctor at the time said she had been to a recent conference that said Metformin could be used to stabalise the cronically unstable T1s including in children!!! This despite the in pack instructions saying "not for children under 18" .
It made him more ill & he gave up almost instantly, but carried on lying to the hospital saying he was taking it so they kept sending him home with more tablets for the next year...
He finally escaped from the "childrens Death TRAP" that was the local children's diabetes team into the adolescent department and has recovered far more without the metformin.

Oh how awful for your lad @crushersmum. I hope he's making good progress now.

As for me and Metformin, the jury's out for now

 

[noblehead]

Well I'm one week in and............nausea, nausea and more nausea

. No appetite whatsoever and having horrible eggy burps. Perhaps i need to go and ask about having the slower release ones? Been having loads of hypos so trying to basal test and adjust my pup settings accordingly. I think, at least now, it will most certainly reduce my daily totals. Will report back in a week

Yes I would otherwise you'll clear every room you walk into

On a positive note at least the drug is lowering your insulin requirements, was your TDD quite high before starting on Met?

 

[Ladybirdy75]

Has your thyroid been tested?
I am reading the book sexy hormones by Lorna R. Vanderhaeghe, I wonder if the weight issue could be related to hormones and imbalances? may be worth trying - she talks about diet and lifestyle, and supplements to take to strengthen imbalances. I have never been able to eat much (but would like to) - I am short and stocky, I have always exercised quite a lot (I do Insanity workout 3-4 times a week now plus cycle to work and walk a bit), my thyroid has been borderline low for many years and the doctors always say I will need meds but with reading this book I am going to try a supplement suggested to see if that helps. A low carb diet should decrease your insulin need and losing weight should also help. They say that large doses of insulin causes extra fat to be stored. I recommend this book.

Funnily enough yes and it has and it came back "sub-clinical hypothyroidism". This was done in May but my Endo doesn't want to treat me for it yet as I've very recently had a heart attack and he said the drugs for the thyroid problem wouldn't be suitable just yet. I'm having another blood test on 13/8/15 so we'll see what happens then.

Sexy hormones...... Could do with lots of those lol. Sounds like i should maybe invest in that book too. Keep us updated on how you're getting on using their recommendations. Following my heart attack I've been working on my cv fitness every single day (having to work within restriction due to coronary heart disease too) and am following a LCHF diet (no animal fats - from fish, nuts, etc). I think one of the reasons for the Metformin was to see if it will help me lose some weight, in 3 months I've lost almost nothing whilst my non diabetic husband and son have lost pounds (again a reason why he tested for thyroid function). However, my body shape is changing.

You do Insanity 3-4 times a week . Good lord you have my respect there lol. I can't wait to be able to move on to my 30 day shred DVD

I'm also short and stocky

 

[Ladybirdy75]

Yes I would otherwise you'll clear every room you walk into

On a positive note at least the drug is lowering your insulin requirements, was your TDD quite high before starting on Met?

Ha ha ha ha oh that's so true. Well i dint think my TDD's were that high until i read other peoples. On average it's around 36u, basal being 22(a bit top heavy) and bolus around 14 (61/39%). I'm working on evening that out. Will be interesting to see the difference Met will make. So far I've got my HbA1c down to 67 in May from 77 in Feb. Still high i know but it's consistently dropping.

I so need to re-educate myself

 

[Ladybirdy75]

Hi LadyBirdy75

I have just joined the forum!

Just wanted to tell you that I was on Metformin when I was a teenager as well as injections. Due to being overweight my body found it hard to recognise the insulin (bit similar to being type 2). I was on Metformin for a little while but once the weight came off I came off of the Metformin. Hope this is helpful xxxx

Very helpful thanks @Kelgirl . It's good to hear of others experience with Met.

 

[sammybabe]

Hi ladybird75 I was diagnosed in 1990 and been on insulin ever since about 10ish years ago I was put on metformin which didn't agree with my tummy I was then put on glucophage SR and been on it ever since. I too had a high HbA1c 5 years ago I did the Bertie course and 4 years ago I got my pump best thing I ever did ! Hope this helped

 

[YorkshireAli]

Hi Ladybirdy - I've been T1 for 20 years now (diagnosed at 36 after my second child) and have struggled with my HbA1C and weight all that time. Last year I changed consultant and my goodness, what a difference! This new man has transformed my life, without exaggeration - he said that as there'd been quite a lot of diabetes in my family (I'm third-generation T1), it was common to have insulin resistance on top of the T1 and suggested that I take Metformin to increase the insulin sensitivity and help with weight control, and also try a low-carb lifestyle. Nothing to lose (except a couple of stone of flab...) I did all of that, and saw results very quickly. HbA1c went from 9.6 to 6.9 in three months, I lost over two stones and had enough energy and motivation to join a gym. Oh, and though my background insulin didn't change, my Humalog (I'm on injections, not a pump) went from 60-70 units a day to under 10.

I was evangelical about it, and then, I don't know, about six weeks ago, the wheels fell off. I stopped keeping a food diary, bread started to creep in (my go-to stress buster) and you can guess the rest. Anyway, yesterday I saw my consultant again for my six-month review - thank goodness - and I've been steered quite positively back to the way. My results weren't quite as bad as I'd feared, but definitely a wake-up call, and for now I've had the Metformin doubled to four a day. I have the slow-release ones, as I'd had awful problems on the other (cheaper) sort - since changing to the slow-release, I've had no trouble at all.

Before I started with this doctor, I'd never realised there were such variations in T1, T2 and stages in between, and I'd never heard of T1s having Metformin. I think it goes to show that one size doesn't fit all when it comes to either diagnosis and medication, and if you have a doctor who's prepared to be a bit more flexible you have a better chance of finding a way to maintain good control. (As long as you don't self-sabotage, like I did, that is!)

 

[Ladybirdy75]

Hi Ladybirdy - I've been T1 for 20 years now (diagnosed at 36 after my second child) and have struggled with my HbA1C and weight all that time. Last year I changed consultant and my goodness, what a difference! This new man has transformed my life, without exaggeration - he said that as there'd been quite a lot of diabetes in my family (I'm third-generation T1), it was common to have insulin resistance on top of the T1 and suggested that I take Metformin to increase the insulin sensitivity and help with weight control, and also try a low-carb lifestyle. Nothing to lose (except a couple of stone of flab...) I did all of that, and saw results very quickly. HbA1c went from 9.6 to 6.9 in three months, I lost over two stones and had enough energy and motivation to join a gym. Oh, and though my background insulin didn't change, my Humalog (I'm on injections, not a pump) went from 60-70 units a day to under 10.

I was evangelical about it, and then, I don't know, about six weeks ago, the wheels fell off. I stopped keeping a food diary, bread started to creep in (my go-to stress buster) and you can guess the rest. Anyway, yesterday I saw my consultant again for my six-month review - thank goodness - and I've been steered quite positively back to the way. My results weren't quite as bad as I'd feared, but definitely a wake-up call, and for now I've had the Metformin doubled to four a day. I have the slow-release ones, as I'd had awful problems on the other (cheaper) sort - since changing to the slow-release, I've had no trouble at all.

Before I started with this doctor, I'd never realised there were such variations in T1, T2 and stages in between, and I'd never heard of T1s having Metformin. I think it goes to show that one size doesn't fit all when it comes to either diagnosis and medication, and if you have a doctor who's prepared to be a bit more flexible you have a better chance of finding a way to maintain good control. (As long as you don't self-sabotage, like I did, that is!)

Thank you @YorkshireAli, that's really good to read and nice to know others experiences in Met. Still making adjustments and the initial queasiness seems to be wearing off, still early days but it's definitely lowering my readings. I really need to basal test .

 

[alisonhe]

Funnily enough yes and it has and it came back "sub-clinical hypothyroidism". This was done in May but my Endo doesn't want to treat me for it yet as I've very recently had a heart attack and he said the drugs for the thyroid problem wouldn't be suitable just yet. I'm having another blood test on 13/8/15 so we'll see what happens then.

Sexy hormones...... Could do with lots of those lol. Sounds like i should maybe invest in that book too. Keep us updated on how you're getting on using their recommendations. Following my heart attack I've been working on my cv fitness every single day (having to work within restriction due to coronary heart disease too) and am following a LCHF diet (no animal fats - from fish, nuts, etc). I think one of the reasons for the Metformin was to see if it will help me lose some weight, in 3 months I've lost almost nothing whilst my non diabetic husband and son have lost pounds (again a reason why he tested for thyroid function). However, my body shape is changing.

You do Insanity 3-4 times a week . Good lord you have my respect there lol. I can't wait to be able to move on to my 30 day shred DVD

I'm also short and stocky

well I have just started taking some supplements recommended in the book - I think my adrenals may be exhausted causing my borderline thyroid but it takes time for the supplements to build up in your body I believe, and I am not due a blood test for awhile so I cant say yet if it is making a difference. I am having peri-menopause symptoms, affecting my sleep which is why I started reading this book initially, I hope it can help. There is lots of advice - I really recommend it x

 

[smc4761]

So glad I found this forum. I visted my diabetic clinic the other day and the new doctor who I saw was very thorough. I have been type 1 since 1981 and taking Humalog 3 times a day as well as Lantus. I have also been taking Metformin for many years. My bloods are typically a little on high side around 8.5. Doctor said I may be developing Type 2 as well and did a blood test for this. he has suggested increasing my Metformin to 2 x 500mg tablets twice a day.

I had never heard of people with type 1 developing Type 2, so this is all new to me. I do need to lose some weight as well as I am about 1.5 stone overweight.

So thanks for posting folks and I look froward to reading more of people experiences

 

[alisonhe]

well I have just started taking some supplements recommended in the book - I think my adrenals may be exhausted causing my borderline thyroid but it takes time for the supplements to build up in your body I believe, and I am not due a blood test for awhile so I cant say yet if it is making a difference. I am having peri-menopause symptoms, affecting my sleep which is why I started reading this book initially, I hope it can help. There is lots of advice - I really recommend it x

Yes - give the book a try, my symptoms seem to be easing, I am sleeping better, I wont know about my thyroid until my next blood test though! Supplementing your hormones could make a huge difference, I also strongly recommend drinking plenty of still (tap) water every day and eating lots of veg - sounds like you are getting exercise so that is great! x

 

[Davyb]

@Ladybirdy75, and others

Read the PIL (Patient Information Leaflet) that comes with your Metformin, and many PILs are also available online, I found at least 3 for Metformin in single google search, the information in them is quite accurate as many Expert G.P.s, Consultants, Pharmacists, and Pharmacology researchers in most countries in Europe have looked at the information in them, They do give the likelyhood of side effects in fairly accurate numbers, 1 in 10 for the common side effects, or 1 in 10,000 for the rare side effects. The common side effects usually only occur when starting on Metformin and getting the dosage right. The rare side effects usually only develop after many years on it.

The role of Metformin is to change much of the glucose held in your liver into a precursor of glucose that cannot pass into most cells in the body, it is scavenged by your kidneys and passes out of you body in the urine stream.

The PIL does say must be taken with or after food, i.e. with a drink of water as you eat or within say 15 minutes.

I have been on Metformin for 18 years, but am T2 and on insulin since May 2014.

Just before I went onto insulin, while waiting for the 3-4 months for the referral to the hospital Diabetes and Endocrinology department, I developed what turned out to be serious constipation for 4 weeks. After a rapid referral to the endoscopy unit , my GP had suspected bowel cancer, a sigmoidoscopy and a colonoscopy, they concluded there was no problem. They and my GP then suspected it was probably increased sensitivity to Metformin and/or an interaction with one of the other 9 tablets i was taking once or more times a day. Changing from 850 mg three times a day to the prolonged release (sometimes called SR) 500 mg two times a day fixed the problem.

I actually ended up with the Diabetes Consultant appointment, at which the decision was made to go onto insulin, i.e. I was passed on to the hospital DSN, and the Sigmoidoscopy on the same day. Diabetes Consultant in the late morning and sigmoidoscopy in the early afternoon. The distance between the 2 units is actually one floor above the other

After 16 months have now returned back to the Level 2 satellite diabetes clinic which is run by the G.P. I see most regularly. The practice has 2 sites, 7 partners and employs other doctors so there are at least 14 G.Ps and usually 2 or more G.P. Registrars and some medical students seeing patients under the appropriate supervision.

Don't be scared about Metformin, it has been out of patent for many years, and is a well known drug to the medical profession. But experience of diabetic patients may be lacking for a few G.P.s who do not deal with many diabetics regularly. Unfortunately many G.P.s develop special interests, so those that have a special interest in diabetes may de-skill some of the other doctors in a practice. 5 or 6 of the G.P.s in the practice I am with, deal with most of the Diabetic patients, I have been a patient with the practice since 1961 (when it was a 2 site, 3 partner practice), except for a 22 year period when I lived and worked in other areas at the other end of the country (i.e. Outer London and Hampshire) and I am just less than 10 years from state pension age.

 

[Ladybirdy75]

Hi guys, I'm sorry i haven't really been around to continue the conversation. Had a holiday then lots of commitments meaning i haven't had a proper chance to sit, read through and digest.

So I'm almost a couple of months into taking Metformin. How is it going........? Meh! I had to be taken off the standard version due to total loss of appetite and severe nausea (and yes, i read the PIL). I started the slow release version about 4 weeks ago and although the nausea is now gone I still have zero appetite. This would be fine if i was a large portion eater or overeater but I'm not (nowhere near) and means i almost never feel like eating. I'm continuing with my very healthy eating, pretty much forcing myself but it would be so nice to actually feel hungry and have an appetite. Worse of all (despite diet and daily 55 min workouts and 30-45 min daily walks and at east 2litres of water a day)...., I've put 6lbs on!!!!!!!!!

My insulin intake has decreased a tiny bit but nothing to sing about but my hypos have changed a lot.......,and not for the better! I'm either say at 2.8mmol with no warning or feeling a hypo emerging at say 7.0mmol. In 40 years of being on insulin i have always had excellent hypo awareness and now i really think Metformin has ******** that up

So in short Metformin has so far:

Robbed me of my appetite and interest in food.

Made me put weight on.

Robbed me of some hypo awareness.

Made negligible difference to my insulin intake.

Not feeling it............ AT ALL! I'm seeing my DSN on Friday and will be discussing it then.

Feeling really fed up if you haven't caught that from my post lol. I'm one of life's glass half full types but this shizzle is bringing me down. I go back to work in a couple of weeks after being off recovering from my heart attack and consequent complications and i was hoping to have this sorted. I work in a busy school nursery which will, on it's own, decrease my insulin

I'm so sorry to moan.

 

[ConradJ]

Hi guys, I'm sorry i haven't really been around to continue the conversation. Had a holiday then lots of commitments meaning i haven't had a proper chance to sit, read through and digest.

So I'm almost a couple of months into taking Metformin. How is it going........? Meh! I had to be taken off the standard version due to total loss of appetite and severe nausea (and yes, i read the PIL). I started the slow release version about 4 weeks ago and although the nausea is now gone I still have zero appetite. This would be fine if i was a large portion eater or overeater but I'm not (nowhere near) and means i almost never feel like eating. I'm continuing with my very healthy eating, pretty much forcing myself but it would be so nice to actually feel hungry and have an appetite. Worse of all (despite diet and daily 55 min workouts and 30-45 min daily walks and at east 2litres of water a day)...., I've put 6lbs on!!!!!!!!!

My insulin intake has decreased a tiny bit but nothing to sing about but my hypos have changed a lot.......,and not for the better! I'm either say at 2.8mmol with no warning or feeling a hypo emerging at say 7.0mmol. In 40 years of being on insulin i have always had excellent hypo awareness and now i really think Metformin has ******** that up

So in short Metformin has so far:

Robbed me of my appetite and interest in food.

Made me put weight on.

Robbed me of some hypo awareness.

Made negligible difference to my insulin intake.

Not feeling it............ AT ALL! I'm seeing my DSN on Friday and will be discussing it then.

Feeling really fed up if you haven't caught that from my post lol. I'm one of life's glass half full types but this shizzle is bringing me down. I go back to work in a couple of weeks after being off recovering from my heart attack and consequent complications and i was hoping to have this sorted. I work in a busy school nursery which will, on it's own, decrease my insulin

I'm so sorry to moan.

Moan away all you need @Ladybirdy75 - it's what we're here for ☺

I am very sorry to hear about your troubles, and hope that you will continue to post irrespective.

I send you a warm hug with very best wishes,
Conrad

 

[Ladybirdy75]

Thank you Conrad was just having one of those days yesterday and feeling sorry for myself. I'm back on it lol, basal tested sat from midnight til mid day yesterday and doing midday to midnight tonight - big chunks i know but i like to get them done . Actually i do think Metformin is having more of an effect on my BG's than i thought as i am having more lows lately. Will keep you posted.