Change of diagnosis

[Duchess21]

Hi. In the spring of 2019 I was diagnosed with Type 2. As I did not need to lose weight my GP just told me to " eat less sugar" .
I did my own research and cut down on sugar/carbs.
In November 2019 I was blue lighted into hospital with DKA. They told me later that I was lucky to be alive.
In hospital I was immediately put onto lnsulin and on my chart it said Type 1.
When I checked with my GP he said I was probably LADA but he couldn't confirm this as there was no test available.
Needing travel insurance I once again asked my GP for a definitive diagnosis. After humming and aahing she said I was " most likely Type 2 insulin dependent".
I'm thinking of going private to try and get this sorted once and for all.
Has anyone been down this route?

 

[Vmlat]

Can I ask why people were referred for testing to check a change from type 2 to type 1? Was it no improvement to hba1c?

 

[Antje77]

Can I ask why people were referred for testing to check a change from type 2 to type 1? Was it no improvement to hba1c?

I asked for a referral because my quick need for insulin after diagnosis, despite seriously cutting the carbs.
I was already on a typical T1 basal/bolus insulin regime with a healthy hba1c when I was rediagnosed.

 

[Speedbird]

Hi. In the spring of 2019 I was diagnosed with Type 2. As I did not need to lose weight my GP just told me to " eat less sugar" .
I did my own research and cut down on sugar/carbs.
In November 2019 I was blue lighted into hospital with DKA. They told me later that I was lucky to be alive.
In hospital I was immediately put onto lnsulin and on my chart it said Type 1.
When I checked with my GP he said I was probably LADA but he couldn't confirm this as there was no test available.
Needing travel insurance I once again asked my GP for a definitive diagnosis. After humming and aahing she said I was " most likely Type 2 insulin dependent".
I'm thinking of going private to try and get this sorted once and for all.
Has anyone been down this route?

Hi Duchess21. Same as you, I kept losing weight and the meds the doc put me on just didn’t work. I felt awful so I decided to go and see a diabetic consultant privately, had various blood tests and I was diagnosed as LADA. The GP had to acknowledge and now treated as a Type1 on the NHS. Good luck whatever you decide to do.

 

[Valsal]

After nearly 10 years of trying to achieve good blood sugar levels, low carbing and steadily losing weight despite taking increasing amount of medication I was referred to the hospital diabetic team for further tests. It has now been confirmed that my type 2 diagnosis has now been now been altered to type 1. It is obviously slowly evolving and has only now reached initiating insulin stage. I am quite apprehensive but looking forward to stopping all the oral meds. I didn't know whether to post on here or on the lada forum, but she was insistent it was type 1as positive for antibodies. Wondering if anyone else has has similar experience, any tips welcome.

My hubby diagnosed as type 2 but straight onto insulin, Tresiba. Has such problems with high bg levels, plus desperately needs to put weight on.

 

[Valsal]

Hi Duchess21. Same as you, I kept losing weight and the meds the doc put me on just didn’t work. I felt awful so I decided to go and see a diabetic consultant privately, had various blood tests and I was diagnosed as LADA. The GP had to acknowledge and now treated as a Type1 on the NHS. Good luck whatever you decide to do.

Hi. What is LADA. Thanks

 

[Speedbird]

Hi. What is LADA. Thanks

Latent Autoimmune Diabetes in Adults is called LADA for short. It's a different form of diabetes. Treated as Type1

 

[Kaydee59]

After nearly 10 years of trying to achieve good blood sugar levels, low carbing and steadily losing weight despite taking increasing amount of medication I was referred to the hospital diabetic team for further tests. It has now been confirmed that my type 2 diagnosis has now been now been altered to type 1. It is obviously slowly evolving and has only now reached initiating insulin stage. I am quite apprehensive but looking forward to stopping all the oral meds. I didn't know whether to post on here or on the lada forum, but she was insistent it was type 1as positive for antibodies. Wondering if anyone else has has similar experience, any tips welcome.

I was originally diagnosed with Type 2 about 12 years ago. 2 years ago, it was revised to Type3C as I had a neur0 endocrine tumour in my pancreas. It was slow growing and killing of the pancreas so less and less insulin was being produced. My pancreas was removed 2 years ago and I take a long acting insulin at night and short acting with any meals containing carbs. I am still on my met Forman and also take empagliflozin - just saying, you may still need to take oral medication

 

[Antje77]

My hubby diagnosed as type 2 but straight onto insulin, Tresiba. Has such problems with high bg levels, plus desperately needs to put weight on.

Has he been tested for T1? (LADA is T1 too.)
Regardless of his type, it looks like his current treatment isn't doing the job.

 

[Duncan Lord]

After nearly 10 years of trying to achieve good blood sugar levels, low carbing and steadily losing weight despite taking increasing amount of medication I was referred to the hospital diabetic team for further tests. It has now been confirmed that my type 2 diagnosis has now been now been altered to type 1. It is obviously slowly evolving and has only now reached initiating insulin stage. I am quite apprehensive but looking forward to stopping all the oral meds. I didn't know whether to post on here or on the lada forum, but she was insistent it was type 1as positive for antibodies. Wondering if anyone else has has similar experience, any tips welcome.

 

[Duncan Lord]

Change of diagnosis is not something to worry about, in fact it is a good thing as you will be able to treat “The Beast” correctly.

At the age of 64, I crashed my car and found, when the ambulance turned up I had BG of 29.9.
Into hospital and immediately told I was Type 2.
Onto insulin and Metformin.

Once I started with the diabetes centre, and as mother had been Type 1 they did the antibody test. They said I was type 2 but just to make sure.

Once the result came back I was rediagnosed type 1.

Stopped Metformin as that just helps your own insulin to work.

Lots of learning, I needed to re gain my PSV license so I can do my job as a bus and coach driver.

All the complications of Type 1
Short temper
Mood swings
Very itchy feet
Lacks of concentration
Erectile dysfunction

Had these for years but had put them down to everyday life.

I joined all the on line forums and started mastering carb ratio and basal insulin.

Also joined Type 1 movement and Type1 Tom.

Worked on basal rates, even 2 years on my pancreas still producing enough for basal rate unless I’m ill. it just can’t cover food.

I’ve now got my full driving licence back, and life is great.
Look as each day as a new challenge and celebrate every WIN.

Remember, yes we might have Type 1 but we also have a life.
Type 1 lives with us, we don’t live with it.
The Beast is like a dog. True at times it tries to take control but WE CONTROL IT.

Have fun, as Type 1’s the only things we can’t do are the obstacles we put in our way.

 

[Mrs HJG]

Thank you for your reply, I was a bit of an anomaly when first diagnosed type 2, and managed quite well to start with but more and more meds given with lesser and lesser effect. I am pleased to be taken off all of them now and sure I will adjust to taking insulin especially with all the knowledge and experience of this site. P.s. Hope you don't have to wait too long for your change in medication, as I understand it, it is better to start insulin sooner rather than later.

As far as I am concerned the longer without insulin the better

 

[Mrs HJG]

Why do people keep saying that t1d are the only one entitled to Libre or Dexcom??

The NICE guidelines for these devices changed quite a while ago and I would urge everyone considering using one to go back to their consultant or DSN and ask/demand in getting one!!

I am in the process of getting my MP to ask for approval to get Libre 3 added to the NHS list of approved devices as the DSN and consultants have not had any joy!

The Libre 3 is better in a lot of ways: more accurate, shorter startup time than dexcom, lasts longer than dexcom, smaller than libre 2 and dexcom... all of this makes it a no brainer but we still cannot get them on the NHS, apparently due to cost!

I mean these are a couple of pounds dearer, I would pay the difference if we get these!!!!

Where I live GPs cannot prescribe Libre/Dexcom, only consultants can, and you can only come under the remit of a consultant team if you are other than T2; perhaps more complicated T2s on multi-medications and insulin will be referred, but T2s on Metformin and diet/exercise will not.

 

[Deleted member 571965]

Type 2 diabetics should be able take advantage of such goodies as libre or dexcom anyway!

The nice guidelines changed some time ago to included type 2's...

The guidelines are quite particular and do not just involve T2DMs. There are specifics that have to be met.

Saying that - I'm a big believer in people accessing technology and actively strive for T2DMs to get libres etc - not always successful.