I'm stopping insulin, metformin and glicazide

[Cornflake57]

I have had type 2 since 2006 and been on a high dose of insulin since 2013. My glucose levels have never been within normal range, HbA1c always high, and my lipid profile is horrendous. I have stopped taking my medication. I no longer wish to deal with it anymore. It is a constant battle, primary care don't have the answers, and just prescribe another tablet to deal with the next issue you raise with regards to diabetes. I experienced secondary care for the first time last week, the consultant wasn't interested and I was out of the room in under 10 minutes. No adjustment to medication, no help or advice, no referral, no tests, no follow up. I give up, I don't want to be dealing with a chronic disease and a system that doesn't want to help. I feel there is nowhere to turn to and it is all so hopeless.

 

[Flakie]

I’m so sorry you feel like this. I don’t have any answers for you but I truly feel for you and the despair you obviously feel.
I don’t feel that I have had any support from my medical professionals particularly my DN who tried to frighten me into taking Metformin when I refused to, but luckily for me I have managed to control my diabetes.
I’m sure others will be along very soon with some useful advice and support so I hope things become a bit clearer for you and there’s something in their advice that will help you. Take care.

 

[Martin Canty]

Hi Cornflake, sorry to hear that you are feeling like this...... However, I would counsel you to continue with your meds while you find other ways to deal with Diabetes; a lot of us have had great success with drastically modifying our diet to cut out almost all carbs.

 

[thejolley1]

Hi,

Im only recently diagnosed so cant imagine the pressures of what you've described. But stopping meds cant be the answer.

Getting better help and actually demanding it is the answer. Ive already had some poor experiences with healthcare professionals 6 months in and the reality is they do not live with it so even the most empathetic professional can not know what its like to have diabetes. Thats why i find advice from peers on sites such as this and books to be so much more beneficial. And comforting.

If your current healthcare providers arent helping you, you are well within your right to escalate this and they have to listen. Just just accept neglect from doctors and nurses.

Ive read a lot of stories of people who have come back from some really bad situations. Please dont give in. Life as hard as it seems is still life. Dont let others tread you down, you always have support of people on here who truly do understand the psychological burden diabetes brings.

I hope you can tackle tomorrow with fresh eyes and mind having had a good nights sleep.

 

[Drummer]

Have you been trying to control your blood glucose when advised to eat carbs?
So many people report that they are simply never told that diabetics should avoid eating carbohydrates.
Fortunately I had worked out long ago that Humans were never intended to eat many of the foods the supermarkets sell so when diagnosed I went back to the diet I know I feel well on, and checked that my blood glucose was reducing - no more problems.
I can't promise you the same result - you might need insulin as your pancreas has been worn out trying to cope with the deluge of starch and sugar from the 'healthy' diet we are advised to eat. You have the means to test your own levels, though - so it might be worth looking at eating far fewer carbs to see if you can survive without medication. Many non medicated type twos start their day with bacon and eggs - maybe sausages and mushrooms, possibly a tomato. Maybe if you fortify yourself with a good dose of protein and fat with a few carbs added purely for the flavour you might feel that you can manage tomorrow after all.
Eating low carb seems to reduce the need for medication for many type twos, in fact it can become essential for them to reduce their insulin and other glucose lowering things to prevent hypos.
It is a pity that you do not have help from your HCPs, and I can't help much - I need no medication at all to be in the normal ranges. If you are going to remain unmedicated, then you really do need to stay away from carbs in order to reduce what could be disastrous consequences.

 

[Ralph-YK]

Hello Cornflake. I'm sorry things are so bad for you.
Have you ever been under the hopital/diabetes clinic for your diabetes management?

 

[Grannylorraine]

Hi Cornflake. I am sorry you have had such a bad experience with the medical professionals who should be helping and supporting you. I am worried however that just stopping taking you medication could lead to you becoming seriously ill. Do you have any family support network? Your thread also sounds to me as if you are giving up on life in which case I would urge you to seek out help for that.

Can you ask to see a dietician etc. Sometimes you have to push for these things, rather than them bring offered.

Can you try what @ drummer suggested, for me personally I can't eat that sort of diet as I have restrict my protein and fat due to another health issue, but many diabetics have good results with LCHF diet.

Please check back in so we know you are ok.

 

[Davein]

I have had type 2 since 2006 and been on a high dose of insulin since 2013. My glucose levels have never been within normal range, HbA1c always high, and my lipid profile is horrendous. I have stopped taking my medication. I no longer wish to deal with it anymore. It is a constant battle, primary care don't have the answers, and just prescribe another tablet to deal with the next issue you raise with regards to diabetes. I experienced secondary care for the first time last week, the consultant wasn't interested and I was out of the room in under 10 minutes. No adjustment to medication, no help or advice, no referral, no tests, no follow up. I give up, I don't want to be dealing with a chronic disease and a system that doesn't want to help. I feel there is nowhere to turn to and it is all so hopeless.

I have seen the results of someone leaving treatment of their diabetes too late and I assure you it was not pleasant. With the NHS being in the state it's in we have to take control of our illness more than ever. That means getting the basics such as our diet under control by eating low carb foods and adjusting insulin accordingly.
There are many, many people on here willing to give you advice but it takes an effort by you to explain to us what your insulin regime is and what foods you eat. You have nothing to loose by talking to us and certainly a whole lot more if you give up. This IS the place to turn and it's far from hopeless. Dave

 

[Flower]

Hello @Cornflake57

I'm so sorry you are having such a tough time at present. Please don't give up on your medication, it is doing something even if the results you're getting aren't where you'd like them to be. Diabetes is 99% self management and the little bit of input we do get from health professions- be it the gp surgery or diabetes clinic- really does need to count and help us to keep going in the right direction. I know it's tough but can you ask to see a different gp or nurse at your practice and tell them how you're feeling and that you really need some good practical help to take control. Have you been able to attend an education course where you can speak to others in a similar position?

Diabetes is tough and it doesn't give up on you, it's called a chronic condition for a reason. I don't want you to fall by the wayside as I'm living with the dire consequences of having done so myself. That was one of the reasons I joined this forum. I've learned a lot from my experience and I would hate to see others go the same way for lack of help and support.I didn't ever think I could be in control but by reading what others were doing and trying different methods I managed to turn my control around.

Please speak to someone at your practice and do let us know how you are. It isn't a hopeless situation and we are all right behind you. 🙂

 

[Northerner]

I have had type 2 since 2006 and been on a high dose of insulin since 2013. My glucose levels have never been within normal range, HbA1c always high, and my lipid profile is horrendous. I have stopped taking my medication. I no longer wish to deal with it anymore. It is a constant battle, primary care don't have the answers, and just prescribe another tablet to deal with the next issue you raise with regards to diabetes. I experienced secondary care for the first time last week, the consultant wasn't interested and I was out of the room in under 10 minutes. No adjustment to medication, no help or advice, no referral, no tests, no follow up. I give up, I don't want to be dealing with a chronic disease and a system that doesn't want to help. I feel there is nowhere to turn to and it is all so hopeless.

I'm very sorry to hear about the poor level of care you have received I would recommend contacting the Diabetes UK Helpline service as they may be able to make suggestions about how you can improve your situation - details below:

https://www.diabetes.org.uk/how_we_help/helpline

 

[Drummer]

I hope that you come back onto the forum and read the messages - I checked in your profile - and I see that the suggestion has been made that it is lifestyle which caused your diabetes - that is something which seems to be firmly lodged in the so called minds of some people - like the 'fact' that Dr Atkins died of a heart attack.
It is just ignorance, and we more sensitive souls do take it to heart - but it is something we just have to live with - not die from.
There are many many people who have decided that it is down to their own efforts to take control rather than trying to get help and information from HCPs who just don't know or don't care - and I still remember fondly the way that the diabetes education pair could not explain how I'd become no longer diabetic.
I do feel that if you need insulin you should be taking it - and checking your BG levels too - because that will tell you what you need to know for your own well being.
If you start to run high glucose, high ketones and no insulin, there will come a point where there is no going back. I do urge you not to go there. If you need any information you can get it online - and there are any number of people who have had even less follow up help - I have not seen my doctor since diagnosis, that is how interested he is in making sure I am coping. I could tell him that I am doing very well now - no thanks to him, but no matter.

 

[Davein]

Well @Cornflake57 that's at least nine people on here who want to help you.

 

[Davein]

I hope that you come back onto the forum and read the messages - I checked in your profile - and I see that the suggestion has been made that it is lifestyle which caused your diabetes - that is something which seems to be firmly lodged in the so called minds of some people - like the 'fact' that Dr Atkins died of a heart attack.
It is just ignorance, and we more sensitive souls do take it to heart - but it is something we just have to live with - not die from.
There are many many people who have decided that it is down to their own efforts to take control rather than trying to get help and information from HCPs who just don't know or don't care - and I still remember fondly the way that the diabetes education pair could not explain how I'd become no longer diabetic.
I do feel that if you need insulin you should be taking it - and checking your BG levels too - because that will tell you what you need to know for your own well being.
If you start to run high glucose, high ketones and no insulin, there will come a point where there is no going back. I do urge you not to go there. If you need any information you can get it online - and there are any number of people who have had even less follow up help - I have not seen my doctor since diagnosis, that is how interested he is in making sure I am coping. I could tell him that I am doing very well now - no thanks to him, but no matter.

I looked at the recent posts Cornflake has made. She has stated her father died at 57 with diabetes and also has two brothers with diabetes. No wonder this lady is at her wits end with high BG levels. I too, hope this lady will return soon to the forum.

 

[Grannylorraine]

I looked at the recent posts Cornflake has made. She has stated her father died at 57 with diabetes and also has two brothers with diabetes. No wonder this lady is at her wits end with high BG levels. I too, hope this lady will return soon to the forum.

I really hope she comes back. I am really worried about her. If many family members have diabetes and her father died young due to diabetes she may think that it is inevitable that she will too. Sorry if that seems a bit blunt, what I am trying to say is she may feel there is no hope for her due to what happened with her father.

Please cornflake let us know you are ok.

 

[Davein]

I really hope she comes back. I am really worried about her. If many family members have diabetes and her father died young due to diabetes she may think that it is inevitable that she will too. Sorry if that seems a bit blunt, what I am trying to say is she may feel there is no hope for her due to what happened with her father.

Please cornflake let us know you are ok.

I'm very worried too GL. We can understand to a higher degree than a medic just what this lady is going through so it really hits home when someone is in such despair and feels there is no hope.

 

[Grannylorraine]

I'm very worried too GL. We can understand to a higher degree than a medic just what this lady is going through so it really hits home when someone is in such despair and feels there is no hope.

Totally agree, I am concerned that she may well be depressed as well with everything going on and feeling no one is listening to her or cares about her health. I say that as someone who suffers depression as it clouds judgement and can make you feel isolated even when there are people around you.

 

[Maz2]

I am so sorry to hear about this Cornflake. Please don't stop taking your medication as you will make yourself very ill.

I don't know the answer to your problems but I see someone has mentioned a Dietician who may be able to help you.

I worked with medical professionals for many years before I retired from the NHS (in an admin and clerical capacity) and I know sometimes patients can feel abandoned and dismissed. I don't think anyone means to make anyone feel like that but I think, in the case of diabetes, at the present state of research and knowledge, all they can say is diet and lifestyle and more meds as no-one really knows how to cure it.

I do hope you will stay in touch with people here as many posters are very experienced and have lived with diabetes for a long time. I have had a great deal of help from people here and joining this Forum was the best thing I ever did.

 

[Heath o]

Hi cornflake partly know how you feel I stopped taking my meds for about year and half,just had enough of taking them kept missing appointments etc and started taking them about 2 weeks before decided to go for blood test and my readings shocked me gave me a kick up the but,and have took them ever since,if you stay off em to long the damage might be unrepairable that my view anyway good luck whatever you decide

 

[bamba]

What normal are you striving for. You are an individual, not a number on your meter.

If you want to change the readings the drugs, the insulin, diet and exercise are tools to help you achieve this.

Use everything the fear, the boredom the hate and focus on the enemy ( and that should NOT be yourself).

 

[AndBreathe]

I have had type 2 since 2006 and been on a high dose of insulin since 2013. My glucose levels have never been within normal range, HbA1c always high, and my lipid profile is horrendous. I have stopped taking my medication. I no longer wish to deal with it anymore. It is a constant battle, primary care don't have the answers, and just prescribe another tablet to deal with the next issue you raise with regards to diabetes. I experienced secondary care for the first time last week, the consultant wasn't interested and I was out of the room in under 10 minutes. No adjustment to medication, no help or advice, no referral, no tests, no follow up. I give up, I don't want to be dealing with a chronic disease and a system that doesn't want to help. I feel there is nowhere to turn to and it is all so hopeless.

Oh dear Cornflake, you have arrived at a dark place at the moment. I feel really for you.

Like the others, I would urge you to continue with your meds, because it doesn't seem likely things will improve without it. Unfortunately, blood glucose running riot is likely, quite quickly to have a negative impact on your mood, as well as potential for you feeling physically unwell.

One comment I would make is that I can totally empathise with you on a series of unsatisfactory appointments with specialists in the arrea of the consultation, it unfortunately can happen. I have spent over two years seeking a diagnosis for some very odd, seemingly random symptoms with a varying level of progress. Only now, having seen a number of consultants do I have a potential diagnosis, which will take months prove or otherwise. I feel your pain, albeit my problem isn't diabetes related.

I don't know if you are aware, but under the NHS you have the right to request a second opinion in circumstance circumstances, such as you describe. Following my first referral my GP explained this to me and I accepted that option. The second consultant was much, much more interested that his predecessor's "we'll probably never get to the bottom of this" response, although he didn't reach a diagnosis, but referred me onto a different specialism.

If you felt your appointment was unproductive (and you clearly do), then ask your GP to refer you fr a second opinion. That referral can be to a name doctor. I ended up researching into local bods and being referred to a single person. There was no push back on that.

Please do go back to your GP and explain how you are feeling, but maybe you could have done a bit of digging into local bods with consultants with an interest in T2 diabetes.

I was very fortunate to be friendly with a specialist nurse in the area, so she could help me narrow the field a bit, but maybe asking folks on here if they know someone near you could help you out. Your referral doesn't actually even have to be in your own area, but it could be doubly frustrating to find someone you like, but with whom your ongoing care could be logistically impractical.

Good luck with it all. I wish you well.