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Fed up with diagnosis & excessive meds

S

star22

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6
I was fine, nothing wrong with me, went for a health check 7 years ago. Told I was diabetic by 0.2 over 5.8. Did they say well lets see if we can rectify this with diet and exercise no. They put me on loads of meds and my blood sugar is now at an incredible 25 to 30 sugar level. I have been to clinics, given multiple medications to try including statins which made me every ill. No diabetic nurse, no monitoring. I cry when I think what they have done to my health.

I am seriously thinking of taking this further and making an official complaint, I have never felt so ill, I nearly faint when I go out, my blood sugars are all over the place. Dont take sugar do take sugar. Its made my life miserable.

No one any time has said to me lets try and do this another way, just pills after pills. I am at my wits end so may just come off the meds myself. Take charge of my own health. If you are borderline get second opinion and advice and dont waste your time listening to GPs who are not giving you options.
 
star22 said:
If you are borderline get second opinion and advice and dont waste your time listening to GPs who are not giving you options.
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Unfortunately the standard of treatment by GPs for diabetes is pretty variable, though metformin is a well known and trusted drug that has been around for ages. If you can stomach the gastric effect that some people get, it shouldn't do you any harm.

Although I agree that your GP should have offered you dietary and exercise advice in addition to the metformin, you're clearly not borderline diabetic now. Those levels are dangerous and I'm not surprised that you are feeling ill on them. I'd ring 111 and ask for urgent advice.

If you're in the UK then you should have had monitoring and a diabetic nurse (though their dietary advice is not always the best). So something has gone wrong, and by all means make an official complaint. But get your levels sorted first. Long term levels like that are dangerously high and put you at risk of DKA (diabetic ketoacidosis, leading to hospital ICU if they catch it in time, death if they don't.) If you have a meter (or urine testing strips) that test for ketones, check them now. (If they are high, then you definitely need to ring 111).

Be aware that a lot of slow onset T1s get initially misdiagnosed as T2. If you're one of these then you will get DKA and die without insulin. So if your levels are in the 20s and staying there, ring 111 now and ask for help.

Just dropping medication with blood sugar levels that high is very very dangerous, potentially deadly.

Good luck.

ps Lots of T2s on here come off medication and/or reduce it by reducing the carbs in their diets, so this may well be an option for you. but you've got to deal with those levels now.
 
Hi. I'm sure there is a way forward we can help you with. Let us know the medications you are on, what sort of daily diet you have and whether you have some excess weight. To start with do you know why your were prescribed the statins. If this was not based on any blood test for cholesterol then you may want to tell your GP that you are considering stopping them.
 
Thank you and this is the most informative support i have received since being diagnosed. I will try everything I can to get my health back. I have been offered insulin, but declined.
 
Hi @star22 and welcome

I’m tagging a couple of people that may be able to help, having weaned themselves off, or at least drastically reduced medication @Andydragon @Krystyna23040

You do need to take care not to be too drastic and to monitor as you go, preferably with some medical input (any chance of a change of GP?)
 
I agree with @Goonergal that you definitely need to monitor as you go and also the advice from @EllieM that your high numbers need to be sorted urgently.

I was unusually a skinny T2 wrongly diagnosed initially as T1 with an hba1c of 125 and and running after meal blood sugars of 26+ and was put immediately on insulin.

I came off insulin and run normal blood sugars with a maximum of 20g net carbs a day.

If however you are a misdiagnosed T1 you very urgently need insulin.

It would be very helpful to know what are eating at the moment and how many carbs you have in a day.
 
star22 said:
I have been offered insulin, but declined.
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Be aware that if you are not producing insulin (either because you are a misdiagnosed T1 or because your insulin production has been damaged by long term high blood sugars) then insulin is not optional, you will die without it. As a T1, I am a big insulin fan, I'd have died 50 years ago without it.

If however you are a regular T2 who is just eating too many carbs for their body to cope with, you may well be able to reduce and/or eliminate your meds just by cutting down (drastically) your carbs. But at the moment, with those high levels, it's not possible to tell whether you're over producing or under producing insulin, and diabetic ketoacidosis is not a pleasant way to die.

Please be careful.
 
I absolutely agree with @EllieM that diabetic ketoacidosis is not a pleasant way to die. When I was admitted to hospital the doctors told me that I was only hours away from a fatal coma. Insulin saved my life - so I am so pleased that I sought emergency treatment that day and did not leave it any longer.
 
@star22 that level of significant blood level increase, with drugs doesn’t sound right at all. We cannot diagnose but meds not working unless you are eating incredibly bad foods would make me go to doctor and ask about tests for other forms of diabetes. My nurse at those levels would have me on insulin I suspect, they would have intervened as those levels sustained are very dangerous in my opinion

So, over a decade my levels and number of drugs I had increased. But mostly on drugs they were not huge, so for me it’s possible I reversed so well because of that

At the start of the pandemic my hba1c was 78 and I was on 2000mg metformin, bydureon and daplaflaglozin. I was very small step away from insulin

Covid scared me so I started with upping my exercise, walking and getting an exercise bike. 30 mins minimum a day

I then looked at carb/calorie counting. I know many say don’t count calories on LCHF but I did so anyway. Aiming for <130g a day carbs and I used online calculators to reduce calories to what they say would be 1kg a week. Note this latter step many don’t do on the forums, so carb counting may well be all you need

my weight dropped roughly 1kg a week and I liaised with the doctor for regular (3 monthly) blood tests and I dropped to the 40s (at which point with doctor support) came off the dapa. Then my levels dropped again so with doctor support again came off the bydureon, month or so ago I halved my metformin as my levels were 38 (i.e. non diabetic). I Am currently therefore on 1000mg metformin only

I have blood work up again next week so rather than 3 months if I am still in the non diabetic range will reduce or go off metformin altogether . A supportive doctor has been key though, the results show for themselves and when I say low carb, I don’t get pushback

my aim was to come off drugs in 3 monthly intervals in reverse order of being prescribed them

I test my bloods to see how they were going, I regularly get 4.5 to 5.5 fasting but my hba1c is higher, so I take that as a bit of advice but don’t expect the levels to be on par (I do test occasionally pre and post meals but not that often now)

I have lost 31kg. For me the weight loss seems to have supported my body and I can tolerate higher carbs than some on the forums. But I do spike, so am aware this is a life long change
 
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Can you help us help you by telling us what medications you are currently on and which you have used in the past and what effects they had? Is excess weight an issue? By a lot or a little? What does a typical days food look like? And when in relation to meals are you testing? All these facts will help us make better suggestions that fit you.
 
Hello and welcome,

Unfortunately many here have suffered by not great advice from the medical profession. We can't give you medical advice but can offer suggestions if you give more information.

The first thing we need to know is what medications are you on. That is really important. The next also very important thing is what are your readings. The thing is some people are type 1s diagnosed as type 2s and the difference is important. Type 2s produce insulin and type 1s don't (a bit more implicate than that ) as type 2s you may be able to manage your diet so you don't need medication. As a type 1 you will need insulin as you don't produce your own.

So everyone here is more than willing to help you but the information is important.

The next thing people will need is some information about what you have been eating.

As people have said above diabetic ketoacidosis is serious so we want to help rather than give any suggestions which may harm.

Welcome and a virtual hug from me.
 
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