desperate for help 5 years in and still have no idea

[CarlG]

Good afternoon I wonder if anyone can help me I’m desperate for help and I can not seem to find any.

I’m was diagnosed as type 1 insulin based over 5 years ago but
In the last year they have found that I’m not type 1 but type 2.
After having a really bad time with doctors and constants NHS and in there words I been treated really badly and I’m like the guy that is lost in the system.
In 5 years I have 7 different constants 18 diabetic nurses one dietitian ( only one visit. )
My eyes only been checked 3 times by the hospital.
My feet only checked once.
I do keep on top by chasing them but getting pushed from pillar to post just makes me think why me.
My mind set changed but for the worse.
I thought if no one cares why should I so started eating the wrong foods like chocolate fatty foods all the stuff I was told not go anywhere near I did.
But
In feb 2017 I changed to become a vegan now I find it even harder and I need help.
I’m on humlin m3 injection twice a day and I have to take forxiga in the morning.

I have spoken to the doctors etc but there not much help really so I was wondering is there groups etc that I can attend as I need support as I’m now starting to get other problems with my legs and hands I get migraines about 2 times a week.
I have tried changing my eating habits but can be incredibly hard when you not been treated well over the years.

My partner is a good help but I understand that she wants to help etc but it should not only be down to her.
I should take my own responsibility for my actions but it’s hard when you fill like your let down but the people that are meant to be there to help you and give advice not tell me you the man that’s lost in the system.

I’m only 40 with a family nearly grown up I should be looking forward to enjoying life not worrying about what happens next.
Any advice etc would be fantastic.

Sorry for going on and on but thorght you be the best to ask.

 

[Flower]

Hello and welcome @CarlG 🙂 Glad you found us.

I'm sorry you've been having such a tough time being pushed from pillar to post.What were the reasons your diagnosis was changed to T2? It seems odd after 5 years of needing insulin and still needing insulin now.

Who is looking after your diabetes management? Are you still under a hospital team or are you under your surgery?

These are the 15 healthcare essentials we are supposed to get https://www.diabetes.org.uk/guide-t...entials/what-are-the-15-healthcare-essentials
Whoever is supposed to be overseeing your care should make sure you have annual retina screening and foot checks along with the option to see a dietitian who can help with your food choices as a vegan.. Also you should be offered the chance to go on a course relevant to the type of diabetes you have. It sounds as if your care has been split up with no one overseeing it and it shouldn't be like that.

I would make an appointment with your gp and say how you feel and that you really need some help to get control and feel better. Ask for regular retina and foot checks and ask what courses are available to you in your area'. Diabetes can be a real challenge and the bit of help and input we get from the healthcare professionals really does need to count as the majority of the time it is down to self management.

The Diabetes UK helpline may be able to advise how you go about getting organised care .https://www.diabetes.org.uk/how_we_help/helpline

I wish you well. It can seem a uphill battle sometimes but it is worth pursuing as you deserve good care and to feel as well as you possibly can. 🙂

 

[Ljc]

Hi Carlg Welcome to the forum. It sure seems as though they have treated you mighty shoddily, imo you need to put in a formal complaint , PALS should be able to help with this and I am sure our diabetes helpline can assist.

The other thing that really concerns me is why after 5 years did they decide you had T2 rather than T1. Did they do additional blood tests or could it be because you had reached 40 which by the way is wrong, a few professionals really do think T1s become T 2 just because of the persons age 😱

Sorry I can’t help with the vegan diet , I’m sure others here may be able to help.

 

[Ljc]

Are you under GP practice or hospital diabetic team for your diabetes care

 

[Hepato-pancreato]

Sorry to say this but it depends where you live. Like the libre being available on nhs. Only certain areas will get it. I’m 5 years in but a pancreatogenic diabetic. Type 3c. Most nhs have never heard of it let alone know the huge difficulty maintaing good bg levels. Being on here the vast differences in opinion is frightening. Like this diagnosed as type 1. Now you are type 2. It depends which consultant you see. Every diabetic is told something different by their diabetes team. A lot of it you have to do yourself.

 

[CarlG]

Hello and welcome @CarlG 🙂 Glad you found us.

I'm sorry you've been having such a tough time being pushed from pillar to post.What were the reasons your diagnosis was changed to T2? It seems odd after 5 years of needing insulin and still needing insulin now.

Who is looking after your diabetes management? Are you still under a hospital team or are you under your surgery?

These are the 15 healthcare essentials we are supposed to get https://www.diabetes.org.uk/guide-t...entials/what-are-the-15-healthcare-essentials
Whoever is supposed to be overseeing your care should make sure you have annual retina screening and foot checks along with the option to see a dietitian who can help with your food choices as a vegan.. Also you should be offered the chance to go on a course relevant to the type of diabetes you have. It sounds as if your care has been split up with no one overseeing it and it shouldn't be like that.

I would make an appointment with your gp and say how you feel and that you really need some help to get control and feel better. Ask for regular retina and foot checks and ask what courses are available to you in your area'. Diabetes can be a real challenge and the bit of help and input we get from the healthcare professionals really does need to count as the majority of the time it is down to self management.

The Diabetes UK helpline may be able to advise how you go about getting organised care .https://www.diabetes.org.uk/how_we_help/helpline

I wish you well. It can seem a uphill battle sometimes but it is worth pursuing as you deserve good care and to feel as well as you possibly can. 🙂

Hello and welcome @CarlG 🙂 Glad you found us.

I'm sorry you've been having such a tough time being pushed from pillar to post.What were the reasons your diagnosis was changed to T2? It seems odd after 5 years of needing insulin and still needing insulin now.

Who is looking after your diabetes management? Are you still under a hospital team or are you under your surgery?

These are the 15 healthcare essentials we are supposed to get https://www.diabetes.org.uk/guide-t...entials/what-are-the-15-healthcare-essentials
Whoever is supposed to be overseeing your care should make sure you have annual retina screening and foot checks along with the option to see a dietitian who can help with your food choices as a vegan.. Also you should be offered the chance to go on a course relevant to the type of diabetes you have. It sounds as if your care has been split up with no one overseeing it and it shouldn't be like that.

I would make an appointment with your gp and say how you feel and that you really need some help to get control and feel better. Ask for regular retina and foot checks and ask what courses are available to you in your area'. Diabetes can be a real challenge and the bit of help and input we get from the healthcare professionals really does need to count as the majority of the time it is down to self management.

The Diabetes UK helpline may be able to advise how you go about getting organised care .https://www.diabetes.org.uk/how_we_help/helpline

I wish you well. It can seem a uphill battle sometimes but it is worth pursuing as you deserve good care and to feel as well as you possibly can. 🙂

Hi guys
Thank you for you advice.

I am under the community/hospital team but at the same time I have to see my GPS nurse a couple times a year.
I have allways been on insulin but when I was told 5 years ago they said I was type 1.
My last but one nurse said she not seen and results from when I was first diagnosed.
When I was sent to the hospital 5 years ago they took one blood test and gave me a drip and I was in for one night the next day I was sent home with needles etc and loads of leaflet.
And
Only that it runs in the family type1 that is and I’m in the right age group for type1.

So she sent me for loads of different blood tests well I had more needles and blood taken than before this was over about 8 months back and forward to the hospital.
She finally had what see needed and said that im type 2.
And that I been taking insulin for no reason as I could of used metafomin to help control my diabetes.
Witch I was taking as well with insulin.
But as I have been taking insulin all this time my
Body has got used to it and I can’t just stop.
She stoped the metafomin witch made me fill 100% better and happier not groggy.
But then I had a new nurse and consoutant and all change again
They wanted to put me back on the metafomin and up my insulin etc
I declined and said they need to read my history.

My blood is at 42 three months ago I’m due my next one this month.