Metformin seems to have stopped working

[Justin]

I was told I had type 2 diabetes in sept 2021 and immediately went on to a zero added sugar and then a extreme low carb diet and upped exercise etc . This didn't lower my levels far enough, so four weeks ago I was put on on 1000mg (2x500mg ) of metformin a day . In the second week my BS levels had dropped dropped dramatically to 4-5- 5.8 ( from a 7 day average of 10+) so I was very positive. Now however they have now gone back up dramatically and are a 7 day average of 10.5 !! no diet change in that period and still on a very severe low carb / no added sugar regime with exercise . I continue to drop weight pretty dramatically too. What does all this mean? I had my doubts that I was a conventional type 2 from the start as I really don't present as a typical diet driven type 2 (being very thin and always having exercised .) Any advice greatly appreciated.

 

[Lily123]

Were you losing weight prior to being diagnosed?

 

[Justin]

Just to add that my initial Hb1ac reading at diagnosis was very high at 117. I havent had a follow up blood test yet so cant say if that has lowered since diagnosis

 

[Justin]

Were you losing weight prior to being diagnosed?

yes pretty consistently for the last two years ( no matter how much I ate ) I was checked for cancer and all the MRI/ CT scans and prostate stuff came back negative .

 

[Lily123]

It is a possibility that you could be Type 1 or Type 1.5 and not Type 2. That is a high HbA1C but just to say that the HbA1C doesn’t tell you what Type you are

 

[Justin]

i'm assuming that if the metformin cant keep the BS levels down its an indication that I'm not normal type 2 ? bearing in mind the dramatic diet change and the healthy amount of exercise

 

[Lily123]

Possibly - as your numbers were in a normal range before metformin maybe it doesn’t agree with you?

 

[Justin]

no . my numbers were 7 day average of 10 + before I took metformin. thats why they prescribed it (as three months of extreme diet change had not reduced the BS levels far enough ) . as i said , my BS levels went down dramatically in week 2 of taking metformin, but have now shot back up to the high levels I had before I started taking it .

 

[Lily123]

no . my numbers were 7 day average of 10 + before I took metformin. thats why they prescribed it (as three months of extreme diet change had not reduced the BS levels far enough ) . as i said , my BS levels went down dramatically in week 2 of taking metformin, but have now shot back up to the high levels I had before I started taking it .

Ah, yes sorry misread the numbers bit. Unless you are T1 or T1.5 as that would explain the metformin not working after a few weeks but other than that I have no clue

 

[Leadinglights]

Your story does seem to suggest that you are not Type 2 but Type 1 or 1.5 (LADA) and you should be at the very least having another HbA1C and also the tests to check for Type 1 which would be a C-peptide and GAD antibody tests. Those would normally need to be done at a specialist centre as the samples need special storage for transport and not all labs do those tests. Also the results take a little while to come back and need to be interpreted by a specialist so the sooner you request those the better.
Metformin helps your body to use the insulin it is producing more effectively but of course will not be particularly effective if you are not producing much insulin anyway.

 

[PattiEvans]

Totally agree, it does sound more like you are slow onset T1 - particularly given the history of weight loss. The metformin wouldn’t be a lot of use if your insulin production is declining. The trouble is that a lot of GPs just make the decision on type going by age at diagnosis, assuming that only children and adolescents get Type 1. I fell foul of that myself. Fortunately I eventually got the proper tests which proved I was T1.

Please do get in touch with your doctor and push to have the correct trsts.

 

[andyp64]

Hmmmm - you sound a bit like me.
I've just done the C-peptide test and am awaiting results.
At this moment, I've had to seriously reduce my metformin as it's giving me the runs big-time.
Although my fasting BS is good (between 4 and 5), I'm getting post-meal spikes of 10-13.
Also, I have zero energy.
Seeing my DN nurse on Thursday ---- hope she has some answers as feeling rotten :-(

 

[Justin]

Hmmmm - you sound a bit like me.
I've just done the C-peptide test and am awaiting results.
At this moment, I've had to seriously reduce my metformin as it's giving me the runs big-time.
Although my fasting BS is good (between 4 and 5), I'm getting post-meal spikes of 10-13.
Also, I have zero energy.
Seeing my DN nurse on Thursday ---- hope she has some answers as feeling rotten :-(

I had those side effects for the first week then all was good and no side effects at all . I'm the same with the low energy levels but Ive put that down to losing so much weight ( and I was very thin anyway ) but I guess its all linked ?. Glad you got progress to getting a c-peptide test . My surgery are c**p in all honesty and the DN nurse is even worse !! lol

 

[Justin]

what does confuse me is why i'm having such large BS spikes after eating a zero carb meal ?

 

[Leadinglights]

what does confuse me is why i'm having such large BS spikes after eating a zero carb meal ?

It is very hard to have a zero carb meal, but unless you are having protein and healthy fats then your liver could be releasing glucose just to give you energy just to keep your organs functioning.
What are you having which you say are zero carb meals.?

 

[PattiEvans]

The body will convert both protein and fat into glucose in the absence of carbs.

 

[SB2015]

I was also surprised when I briefly went very low carb, or zero carbs. My Libre was still showing spikes which I had not expected, as the body will use proteins and fat in the absence of carbs. That takes a bit more working out, and I decided to up my carbs again to avoid needing to take account of proteins.

Your levels certainly seem to suggest that you could be slow onset T1. However bad your experience of your GP and DN has been you will need to follow this up. If you get no joy with either doing a GAD antibody test (The pesky things that destroy the beta cells in T1) or a c-peptide test (more expensive so a greater reluctance to use) then ask for a referral to a specialist.

Let us know how you get on.

 

[Justin]

It is very hard to have a zero carb meal, but unless you are having protein and healthy fats then your liver could be releasing glucose just to give you energy just to keep your organs functioning.
What are you having which you say are zero carb meals.? well so low on carbs its effectively zero . a rare fillet steak with green salad and only olive oil dressing with water and with a 30 minute brisk walk afterwards . but even on metformin I still spiked to 13.5 one hour afterwards and was only down to 11.5 two hours after .

 

[Leadinglights]

Did you check what your level was before your meal because the increase may not be as much as you think from the food, it may just be that your before meal level was high.
Also going for a brisk walk could well be the reason your level is high.
If you are going to be trying to get the extra tests for Type 1 it would be worth trying to collect some information of before meal, after meal together with what you have eaten and also see if it makes a difference if you don't have a brisk walk.
Testing 2 hours after your meal is the normal time to test.

 

[Justin]

I was testing at all those times when first diagnosed and for two months afterwards but have now settled on testing before eating and then 2 hours after. As well as waking BS level. Also my meter gives me a 14 day and 7 day average BS level and there is no doubt that my levels have jumped back up dramatically four weeks after starting metformin. It appears to have lost its effectiveness very quickly sadly . This tallies with the idea that I am actually type 1/1.5 and my body is essentially shutting down its insulin production faster than metformin can compensate for . Before the steak and salad meal my level was 9.5 so it went up four points (13.5) and didn't come back down to 9.5 at all that night, but stayed at 10.5 . Again not encouraging. I will push for the relevant tests and try to get confirmation of type as i cant really go on like this !!