Not sure whether I'm angry or not!

[Scufflers]

Background - I take anticoagulants due to idiopathic PEs eight years ago. I've always been a broad chested fellow with fluctuating weight (between 14.5st and 19.5st at my heaviest end of last year).

4 years ago I had my well man check and the nurse tested me for diabetes on a finger prick test and said no worries there. Then 24 months ago as part of my routine test apparently they did an HBA1c test (which I was not consulted on nor did I give consent to do) which came back as pre-diabetic. Allegedly they sent me a letter. I did not receive this letter and no one told me about it, despite a couple of anticoagulant appointments since. In October last year I got a bad flu, literally was the same symptoms as Covid, terrible cough fever and fatigue. The doctors put me on Macrolide antibiotics which lasted all the way into the last week in November. In late November they did another HBA1c test (again without consult or consent) and told me early December I was diabetic, with an HBA1c of 58. I was then told about my pre-diabetic result and was annoyed that they had failed to tell me. I requested another test which they did end of December, which came back at 52, and I dutifully went to the Diabetic Nurse appointment mid January, pledged to lose weight and started taking Metformin, 2000mg built up over a month.

Now here's the interesting bit and the bit that is making me confused.

I lost three stone over the following three months, got a blood sugar meter, started eating low carb, running daily (well jogging) and I'm really happy about it, genuinely feel better, fitter, my heart rate has gone from resting rate of 70 to 55-57, I'm better able to run round with my kid etc etc. We all know the benefits of LCHF don't we! However Metformin has played merry hell with my digestion constantly. I lived with it because it was necessary etc etc but frankly its made me worried to pass wind and made me carry moist toilet roll everywhere I go its been that bad. At the end of March I spoke to the diabetic nurse and told her my progress, she said they couldn't do an HBAc test due to Covid which was fine, so we talked about the weight loss and the fasting BG levels and said we would pick it up when we could do a test. In the meantime I continued my Metformin and stomach issues having the prescription repeated every month until this month....
The doctor refused to sign my prescription and told the Pharmacy he didn't know why I needed it. Ok...? I got a telephone call to say that they had done an HBA1c test on 20th February (which was supposed to be an anticoagulant check which they actually failed to test) which had come back at 46. At 46 they don't prescribe Metformin apparently. So I've been struggling with stomach issues for FOUR months when I shouldn't have been. I'm going for an HBA1c test this afternoon and if it comes back lower than 42 I will be livid. From what I can gather, Rivroxaban (my anticoagulant) can affect blood sugar as can the macrolide antibiotic I was on. It's amazing that my HBA1c level fell back so much based upon one month of LCHF when it was so high for the two months prior to that (including Xmas where I was definitely very very high carb). I genuinely believe the diagnosis of Diabetes and the prescription of Metformin was therefore rushed and they did not look at the other factors at work.

But on the other side, it made me change my lifestyle, made me lose weight and get fitter, made me eat better and less, so the diagnosis has definitely helped me in the long run.

Sorry for the long winded rant but I am now feeling very confused about what has happened here. I'm glad the diagnosis happened even if it was wrong, but from the same point of view I'm furious I've struggled on Metformin for at least four months when I didn't need to, maybe I should never have been put on it.

 

[bulkbiker]

It's amazing that my HBA1c level fell back so much based upon one month of LCHF when it was so high for the two months prior to that (including Xmas where I was definitely very very high carb).

Not really many of us have experienced dramatic changes in HbA1c in a relatively short time due to removing carbs.
Your levels weren't all that high to start with so it's not unexpected really.

But on the other side, it made me change my lifestyle, made me lose weight and get fitter, made me eat better and less, so the diagnosis has definitely helped me in the long run.

Yep as many of us have found the diagnosis leads to a far healthier life.

I've struggled on Metformin for at least four months when I didn't need to

That would annoy me too and is why I stopped it after 3 weeks of hell.

 

[Brunneria]

The thing that jumps out at me isn't the details about diagnosis etc, it is the fact that you were left on Metformin, indefinitely, when it was having gut consequences that were affecting your life, all day, every day.

I am a cheerful proponent for the use of medication when appropriate, when helpful, and in the absence of quality-of-life-affecting contraindications. Your situation ticks none of those boxes. I would also hope that diet and lifestyle changes are tried first, if the diagnosis is T2 diabetes.

Healthcare professionals have a whole armoury of different drugs - including a slow release version of Metformin that doesn't cause nearly as much unwanted aggro - that they could have switched you to, and tailored your drug regime to you personally.

How much of that is ignorance, neglect or ignoring your pleas for help, isn't something I can judge.
However, if you are ever told that you need Metformin again, then make sure they give you the slow release version to try, and make sure that if things are not working for you, you hop up and down and make them take you seriously.

 

[Bodewhin]

The good news is that you have improved your health a great deal and also that you are here now. There is a lot of support on this forum for helping deal with daily diabetes life. Please post again if you are having trouble with something and we can try to help. No one should be stuck taking Metformin for months with all those side effects - I understand Covid really messed with the flow of GP offices but still!

Well done you for getting into great shape!

 

[TriciaWs]

My blood sugars dropped from diabetes into normal levels within 2 weeks of going low carb - even my morning rise was gone by the end of week 4 - but I know from a previous prediabetes diagnosis, that I resolved by going low carb for a few weeks, that it could creep back up if I go back to my old eating habits.
Prediabetes, to fine on (temporarily) low carb, then to full t2 diabetes took me a couple of years.
T2, to ok by week 2 of low carb, to full remission took a few months.

 

[JoKalsbeek]

Background - I take anticoagulants due to idiopathic PEs eight years ago. I've always been a broad chested fellow with fluctuating weight (between 14.5st and 19.5st at my heaviest end of last year).

4 years ago I had my well man check and the nurse tested me for diabetes on a finger prick test and said no worries there. Then 24 months ago as part of my routine test apparently they did an HBA1c test (which I was not consulted on nor did I give consent to do) which came back as pre-diabetic. Allegedly they sent me a letter. I did not receive this letter and no one told me about it, despite a couple of anticoagulant appointments since. In October last year I got a bad flu, literally was the same symptoms as Covid, terrible cough fever and fatigue. The doctors put me on Macrolide antibiotics which lasted all the way into the last week in November. In late November they did another HBA1c test (again without consult or consent) and told me early December I was diabetic, with an HBA1c of 58. I was then told about my pre-diabetic result and was annoyed that they had failed to tell me. I requested another test which they did end of December, which came back at 52, and I dutifully went to the Diabetic Nurse appointment mid January, pledged to lose weight and started taking Metformin, 2000mg built up over a month.

Now here's the interesting bit and the bit that is making me confused.

I lost three stone over the following three months, got a blood sugar meter, started eating low carb, running daily (well jogging) and I'm really happy about it, genuinely feel better, fitter, my heart rate has gone from resting rate of 70 to 55-57, I'm better able to run round with my kid etc etc. We all know the benefits of LCHF don't we! However Metformin has played merry hell with my digestion constantly. I lived with it because it was necessary etc etc but frankly its made me worried to pass wind and made me carry moist toilet roll everywhere I go its been that bad. At the end of March I spoke to the diabetic nurse and told her my progress, she said they couldn't do an HBAc test due to Covid which was fine, so we talked about the weight loss and the fasting BG levels and said we would pick it up when we could do a test. In the meantime I continued my Metformin and stomach issues having the prescription repeated every month until this month....
The doctor refused to sign my prescription and told the Pharmacy he didn't know why I needed it. Ok...? I got a telephone call to say that they had done an HBA1c test on 20th February (which was supposed to be an anticoagulant check which they actually failed to test) which had come back at 46. At 46 they don't prescribe Metformin apparently. So I've been struggling with stomach issues for FOUR months when I shouldn't have been. I'm going for an HBA1c test this afternoon and if it comes back lower than 42 I will be livid. From what I can gather, Rivroxaban (my anticoagulant) can affect blood sugar as can the macrolide antibiotic I was on. It's amazing that my HBA1c level fell back so much based upon one month of LCHF when it was so high for the two months prior to that (including Xmas where I was definitely very very high carb). I genuinely believe the diagnosis of Diabetes and the prescription of Metformin was therefore rushed and they did not look at the other factors at work.

But on the other side, it made me change my lifestyle, made me lose weight and get fitter, made me eat better and less, so the diagnosis has definitely helped me in the long run.

Sorry for the long winded rant but I am now feeling very confused about what has happened here. I'm glad the diagnosis happened even if it was wrong, but from the same point of view I'm furious I've struggled on Metformin for at least four months when I didn't need to, maybe I should never have been put on it.

My guess'd be you were thoroughly diabetic, with a HbA1c like that (I'm thinking the other factors can have had a slightly elevating effect, but not that much), and that going LCHF got you in remission. That was all you. The metformin.... Yeah. That should've been stricken off your list when the gastro-intestinal misery lasted for more than 2 weeks. If it doesn't abate by then, it's not going to. They dropped the ball.

I still voted "let it go", simply because a lot goes wrong all of the time and you know what.... You managed perfectly fine on your own. You controlled your blood sugars without all that much help (more like the contrary), and you basically learned not to just take everything at face value: always question everything, and stay in charge of your own health. You certainly did a lot better than the practice did. It's just another case of sh*t happens, (and a lot of it, with metformin!). Those 4 months you'll never get back, true.... But in the meantime you also learned just how much power you have to control your own health without pills and whatnot. Have a little faith in yourself, and go from there.

Hugs,
Jo

 

[KK123]

Hi there, I voted let it go as well. I should think most of us at one time or another has become exasperated with our medical teams and many have suffered greatly because of it. There are circumstances where things cannot be 'let go' of course but as others have said, you are healthier now than you were to begin with and even if you pursued this, what would you achieve at this point other than a lot of stress. I know for a fact that I was diagnose as pre diabetic 3 years before an eventual diagnosis of type 1 and in that 3 years my health must have suffered ending up getting DKA and being rushed into hospital. Yes I was angry that they didn't do certain tests back then as I did not fit the so called 'profile' of a pre diabetic/type 2 in ANY way (albeit I know many people don't). I remember them saying 'well change your lifestyle' even though I was slim/ran most days/ate mainly salads & veg & meat/didn't drink or smoke. etc, etc, they do not listen, they assume. After a few months of anger I let it go and have felt much better since. xx

 

[DCUKMod]

@Scufflers - Your story is a curate's egg really.

Of course, a diagnostic result should have been shared with you, but the reality is pre-diabetes isn't a medical condition, recognised by the World Health Organisation, so on that basis, no huge, compelling reason for your Doc to comment upon that.

Leaving you on Metformin, whilst experiencing debilitating effects is a bit unfortunate, if not a bit unnecessary, but many do find any disturbances settle after a short while. That said, there are plenty of alternatives out there, as well as trying no medication at all.

As far as the consent is concerned, it is likely you will have given oral consent to the person about to take the blood, even if you were unaware which tests were actually going to be done.

In reality (and I'll quite probably sound very harsh here) is that your case is a prime example of when we have to be at the forefront of our own healthcare - including being able to see aspects, if not all of our won medical records.

That allows you to see what tests have been done, and what results you have achieved, in near real-time.

I guess the stark reality is you are likely healthier than you were last year.

An A1c test reflects the averages over the preceding couple of months, so your tablets and antibiotics may or may not have had an impact on your results, but 58 is over the diagnostic threshold. A number of people are diagnosed as a result of taking various medications. My own father had a diagnosis, having been started on hefty doses of teroids, in an effort to take the edge off another, very serious medical condition. In his case the steroids were non-negotiable, so he got on with it.

My advice to you now, would be to apply for access to your medical records. I have access to my full life, full record, soI can go back a long way. Others just have access to their test results and repeat prescriptions data, so it's up to you what you want, plus what your surgery can offer you.

Even my OH who hates visiting doctors has full access, just to ensure his records re maintained accurately.

Sadly, we have to be our own health advocates. relying on someone who has several thousand others to consider doesn't feel good enough to me.

Good luck with it all.

 

[Scufflers]

Thanks to everyone who has commented here, and for their honest views. Two things stand out for me; firstly the suggestion (certainly not harsh in my eyes) from @DCUKMod to get my medical records and keep in better control of what's going on thank you thats noted and I will act upon it, and secondly the point from @KK123 saying they felt better when they just let it go. The poll result also backs that up so I'll not be angry then haha.
The real plus from all this as we have all said is that it caused me to very much change my lifestyle and conquer the issue. After my lunchtime run I felt really really good about basically everything so I'll use that lingering high to chill out!

 

[DCUKMod]

Thanks to everyone who has commented here, and for their honest views. Two things stand out for me; firstly the suggestion (certainly not harsh in my eyes) from @DCUKMod to get my medical records and keep in better control of what's going on thank you thats noted and I will act upon it, and secondly the point from @KK123 saying they felt better when they just let it go. The poll result also backs that up so I'll not be angry then haha.
The real plus from all this as we have all said is that it caused me to very much change my lifestyle and conquer the issue. After my lunchtime run I felt really really good about basically everything so I'll use that lingering high to chill out!

Things happen in life. We can't change history, but we can influence our future. I find it better to look forward than to be tortured or angry about things we can't change.

Good luck with it all, and don't be a stranger.

 

[NicoleC1971]

Background - I take anticoagulants due to idiopathic PEs eight years ago. I've always been a broad chested fellow with fluctuating weight (between 14.5st and 19.5st at my heaviest end of last year).

4 years ago I had my well man check and the nurse tested me for diabetes on a finger prick test and said no worries there. Then 24 months ago as part of my routine test apparently they did an HBA1c test (which I was not consulted on nor did I give consent to do) which came back as pre-diabetic. Allegedly they sent me a letter. I did not receive this letter and no one told me about it, despite a couple of anticoagulant appointments since. In October last year I got a bad flu, literally was the same symptoms as Covid, terrible cough fever and fatigue. The doctors put me on Macrolide antibiotics which lasted all the way into the last week in November. In late November they did another HBA1c test (again without consult or consent) and told me early December I was diabetic, with an HBA1c of 58. I was then told about my pre-diabetic result and was annoyed that they had failed to tell me. I requested another test which they did end of December, which came back at 52, and I dutifully went to the Diabetic Nurse appointment mid January, pledged to lose weight and started taking Metformin, 2000mg built up over a month.

Now here's the interesting bit and the bit that is making me confused.

I lost three stone over the following three months, got a blood sugar meter, started eating low carb, running daily (well jogging) and I'm really happy about it, genuinely feel better, fitter, my heart rate has gone from resting rate of 70 to 55-57, I'm better able to run round with my kid etc etc. We all know the benefits of LCHF don't we! However Metformin has played merry hell with my digestion constantly. I lived with it because it was necessary etc etc but frankly its made me worried to pass wind and made me carry moist toilet roll everywhere I go its been that bad. At the end of March I spoke to the diabetic nurse and told her my progress, she said they couldn't do an HBAc test due to Covid which was fine, so we talked about the weight loss and the fasting BG levels and said we would pick it up when we could do a test. In the meantime I continued my Metformin and stomach issues having the prescription repeated every month until this month....
The doctor refused to sign my prescription and told the Pharmacy he didn't know why I needed it. Ok...? I got a telephone call to say that they had done an HBA1c test on 20th February (which was supposed to be an anticoagulant check which they actually failed to test) which had come back at 46. At 46 they don't prescribe Metformin apparently. So I've been struggling with stomach issues for FOUR months when I shouldn't have been. I'm going for an HBA1c test this afternoon and if it comes back lower than 42 I will be livid. From what I can gather, Rivroxaban (my anticoagulant) can affect blood sugar as can the macrolide antibiotic I was on. It's amazing that my HBA1c level fell back so much based upon one month of LCHF when it was so high for the two months prior to that (including Xmas where I was definitely very very high carb). I genuinely believe the diagnosis of Diabetes and the prescription of Metformin was therefore rushed and they did not look at the other factors at work.

But on the other side, it made me change my lifestyle, made me lose weight and get fitter, made me eat better and less, so the diagnosis has definitely helped me in the long run.

Sorry for the long winded rant but I am now feeling very confused about what has happened here. I'm glad the diagnosis happened even if it was wrong, but from the same point of view I'm furious I've struggled on Metformin for at least four months when I didn't need to, maybe I should never have been put on it.

Glad you have done all the right things to normalise your blood sugars, insulin and probably lots more besides.
What you can take away from this is to question what you are told by a doctor especially when being told to take a medication with debilitating side effects such as those described.
I think in an ideal world there should be a discussion about the cost and benefits (and there are some benefits to metformin) of taking any drug and a full exploration of the alternatives which in the case of type 2 diabetes is diet and exercise. Doctors are used to patients failing to lose weight or exercise whereas what you have tried with lchf seems to work and be sustainable so IMO you should be on a poster.
At least someone spotted the error and deprescribed you.

 

[HSSS]

Can only echo all the above. I too found out about lots of tests should have told me I was heading to diabetes but didn’t get told. I have also been misdiagnosed on several conditions and only correctly diagnosed when I went back repeatedly and asked specifically if I had x y or z. Yes I was mad, and frustrated. But ultimately I have taken control of my health and conditions and ask A LOT more questions now. Any blood test I ask what it’s for and often take a pic of the request form. I get all results in numerical form (not a fine or ok comment). I write lists of questions, I ask about side effects of any medications and how long to wait before stopping or returning if I get them. I ask for reasons why they recommend a course of action over another, how long a treatment should take to work, what to do it it doesn’t, who and when a condition should be followed up by etc etc

But getting mad will only make you feel worse. Learn from the experience and move on.