Feeling awful

Hi @Maddy7 and welcome to the forum
Yes many people get digestive problems on Metformin (fewer on the extended release version). So there are several people who have come off it and control their Type 2 by lifestyle alone (I never went onto Metformin in the first place).

Your dizziness may well be due to your high Blood Glucose levels. needing to urinate frequently is a classic sympton of high Blood Glucose as the body tries desparately to pee out the damaging glucose .

It appears that you have a Blood Glucose monitor, were you told how to use it properly in order to work out which foods are suitable for you? test before a meal and then 2hrs after first bite aiming to keep the difference to 2.0mmol or below. It seems you aren't meeting that goal, so it is likely that you are eating too many carbs.

You don't mention how you tried to control your Diabetes with 'diet and exercise'. Most people are given very bad advice from their doctor or nurse and encouraged to eat 'healthy whole grains 'brown carbs' and fruit' - which are often anything but healthy for a Type2 Diabetic since they are just as high in sugars as 'white' refined carbs and many sugary soft drinks. All the extra fibre does is make it take a little longer to spike your blood glucose.
Just cut all forms of carbs until you work out which ones you can handle OK - eat more protein and traditional fats (e.g. in eggs, hard cheese, nuts and on meat) to make up the calorie deficit and you will find you get better BG readings and you will probably lose weight as well (at a nice sustainable rate (not too fast just 1lb to 2lbs per week).

Many of us have a Low Carb High(er) traditional Fat 'Way Of Eating'' which has put our BG levels back to normal and our Hba1C numbers back below the diabetic range even without any additional exercise.

I strongly suggest you read this 'Nutritional thingy' by Jo Kalsbeek :
https://josekalsbeek.blogspot.com/2019/11/the-nutritional-thingy.html

Maddy7 said:

Hi just not really sure where else to turn and needing some advice. I had gestational diabetes and then in February I got diagnosed with type two. I got told to diet and exercise which I tried but didn’t seem to help. I am 11 stone 6. I then got put on metformin which made my stomach really bad so came off that and now I am on the prolonged release metformin. I am struggling at the min and I have no energy at all I am feeling really sick and sometimes being sick. Also sometimes feeling dizzy when trying to sleep. I have to go urinate so many time also. My fasting blood sugars have been between 12/13.8 and after I am eating it’s between 15.8/20.8. The docs said they won’t do another blood test till I have been on the medication for three months. Does anyone else experience these symptoms.

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Sorry to hear you are feeling rough and tbh it is not surprising with your blood sugars being3-5 times as high as they should be despite being on metformin. Your progress to high bgs seems rather rapid.
You are peeing a lot because your body is trying to clear out the excess glucose and as a result you could be dehydrated hence dizzy. Feeling nauseous is also a sign; the excess glucose is toxic and your body is trying to get rid of that glucose.
If this were me or a friend I'd be back at the GP and asking them to check that you are NOT type 1 as this is a common misdiagnosis for adults with your history of GD and type 2 is still the most likely diagnosis.
Your GP should look to see if your levels of insulin are normal (c peptide) and possibly to see if you are making antibodies (GaD I think) indicating that your body is working against your insulin producing cells.
Other signs might be weight loss, fruity breath, extreme fatigue.
As you are most likely type 2 it is still definitely worth checking the diet links suggested but do keep checking your sugars to see how they respond to things like eating bread, cereal, pasta, rice or sweet things as that will provide further signs.

Hi, and welcome to the forum,

I agree with what the others said as regards high blood glucose levels being the most likely cause of your symptoms, and the Metformin being the cause of any tummy upsets. I won't repeat what has been said, but would like to say that you cannot rely on Metformin to bring your levels down. It only helps to a limited extent and will not help reduce any post meal spikes. Diet is the key. Perhaps you could tell us what your typical diet is at the moment and we may be able to spot something to help.

I couldn't take the normal Met due to similar problems. The slow release version was better but still i would have problems especially as built the dose up.This has eased but dont be afraid to drop from 4 to 3 or 3 to 2 for awhile if the problems occur.Build up again slowly. It seems many dont have issues with Met but i certainly did and sounds like you also. I'd agree with the others that you need more help from GPs they did say to me when i was in your position if the SR didn't agree with me still a few week down the line they would explore different tablets but it did settle and with that the lethargy and other side effects eased and then the numbers stabilised and started to drop. Hope you find similar.

I too found I felt pretty grim when cutting down a lot on carbs, but it does pass after a few weeks - you just have to bear with it while your body re-adjusts to it. My diabetes was diagnosed due to other investigations into lethargy (iron deficiency mostly) so I already didn't feel well, and it took about three months for me to come around.

I don't eat rice, potaoes, pasta or much bread, but do have two slices of Burgen (it has lower carbs) a day most days and a small amount of cereal in the morning - on this I have an HbA1c of 5.5/37.

So stick with it, it does get better, your diet isn't too bad but I'd leave those potatoes out though!

It's not easy, but it's worth persevering with in the hope it can get your BG under control. I wish you luck, with the liver too. **** disease..... :-(

Maddy7 said:

Hi just not really sure where else to turn and needing some advice. I had gestational diabetes and then in February I got diagnosed with type two. I got told to diet and exercise which I tried but didn’t seem to help. I am 11 stone 6. I then got put on metformin which made my stomach really bad so came off that and now I am on the prolonged release metformin. I am struggling at the min and I have no energy at all I am feeling really sick and sometimes being sick. Also sometimes feeling dizzy when trying to sleep. I have to go urinate so many time also. My fasting blood sugars have been between 12/13.8 and after I am eating it’s between 15.8/20.8. The docs said they won’t do another blood test till I have been on the medication for three months. Does anyone else experience these symptoms.

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Hi

Really sorry to hear you are going through this, I rarely post but you mentioned being sick and feeling sick if I were you I would tell this to the doctor or diabetic nurse at the doctors along with 2-3 days of readings and mention you are eating limited carbs. Nicole already mentioned could it be Type 1 LADA as you don't seem to be responding to the metformin slow release. I agree it's worth checking this. Your blood sugars should be between 5 and 8 most of the day certainly in single figures. The figures you mention are really too high. You need to correct this with the guidance of a diabetic nurse ideally.

IF and this is only IF you have been misdiagnosed high blood sugar and being sick is a sign of ketones which are dangerous for Type 1 diabetics. you need to have the GAD antibody blood test, if you have any GAD antibodies then you have Type 1 LADA diabetes (To answer one of your questions your doctor will not repeat the Hba1c blood test for 3 months, there is no point, you will just get a very similar result and you know you are diabetic you just need to be sure which type, as you are still having trouble) IF you have Type 1 LADA metformin will not work alone, you need insulin. I know this from experience as I was misdiagnosed briefly but became very ill with ketones whilst the confusion was sorted out.

So do definitely tell the doctor you have been sick (it may not be a side effect of metformin) with pretty constant high blood sugar and you are eating limited carbs so they need to investigate why the metformin is not working. Or maybe the dose is incorrect? Maybe worth recording all your food for a couple of days so you can show the doctors how many carbs you are eating.

Also did you know that skipping breakfast may not be the best thing A quote from google: Skipping meals could potentially push your blood glucose higher. When you don't eat for several hours because of sleep or other reasons, your body fuels itself on glucose released from the liver.

This is definitely the case with me if I have my breakfast late my blood sugar just rises the longer I am up and about without eating, have some scrambled eggs or similar early ( carb free breakfast - lots on-line) and see if this improves things for you. We are all different but worth a try.

Anyway please don't struggle on, do call the doctor and ask for some help with this. If my blood sugar goes up to around 12/ 13 I feel dreadful, blurry vision, headache, faint, dizzy, sick, going for a wee all the time, any higher and I am in danger of developing ketones, if this happens I am usually sick. You must be really suffering with such high blood sugar all the time so get it checked out and I hope it is type 2 as you can reverse it however if not this situation is easily corrected with insulin. Don't carry on like this. Let us know how you get on.

Maddy7 said:

Thanks I will try harder to cut out carbs. I also have a b12 deficiency which doesn’t help with the tiredness. Also my liver function is abnormal so I am awaiting a fibrous liver scan.

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One more quick point about your B12 deficiency, do you have pernicious anemia? This is an autoimmune disease, the same as Type 1 LADA diabetes, mention this to the doctor, it would be further justification for you to have the GAD antibody blood test.

I second the others' concern that you might potentially be T1/LADA (LADA is slow onset T1). Your doctor will be assuming you are T2 because of the GD, but your symptoms are concerning and I would urge you to go back to the doctor asap, describe your symptoms and ask for a c-peptide and GAD tests.
https://www.nhs.uk/conditions/diabetic-ketoacidosis/
If you have DKA then you need to go to the hospital, as it is lethal if left untreated and needs insulin.

Good luck.
ps you could try getting some urine testing strips from the chemist and testing for ketones, though lowish levels of ketones are normal if your are in dietary ketosis.

Maddy7 said:

Thanks everyone I will make a docs appointment soon. I am currently self isolating due to being in contact with someone with Covid. And when I was pregnant I ended up really ill with the diabetes and was in hospital a lot on slide and scales think that’s what it’s called lol and my ketones were really high, the diabetes specialist said he thinks I could be type one even before pregnancy that’s why it was so out of control. But the docs said I was pre diabetic then type 2. I haven’t had much guidances from the doctors to be honest

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Hi Maddy

The more you tell us the more I am concerned for you that you may be Type 1 LADA, insist on the GAD antibody blood test asap, can you have a telephone appointment with the doctor to discuss this, they could post you the blood test form and book a blood test for the day your isolation ends? It can be serious if they have got this wrong and the GAD antibody blood test is the only sure way to find out.
In the meantime eat low carb and look at the link Ellie has posted regarding diabetic ketoacidosis. Be aware of the symptoms and call an ambulance if necessary. I collapsed with this and ended up in hospital on a drip for 24hours. Take care. Hope you have a better day today. Do ask further questions if your doctor surgery is not very forthcoming. I found though I really had to do my own research on all of this, this site has a lot of good information.

As some others have said T1 is always possible even though you may have a bit of excess weight. Metformin never has that much effect on blood sugar so the GPs are being a bit optimistic with Metformin but they do rely on it too much. As you have reduced the carbs I would contact the surgery again and tell them your meter readings and that you aren't feeling well; ask for the T1 tests. They could add something like Gliclazide for a while which may well help but they need to ensure your diagnosis is correct.