51years type 1

[Twini]

Hi everyone
I was promised a medal last year for being a type 1 for 50 years but still not received it n now it’s 51 years …. It may sound daft but I really want it as I feel proud about it . My diabetic nurse is aware but keeps forgetting! So is there another way I can receive it?

 

[Deleted member 527103]

The medal comes from the charity Diabetes UK.
Despite the very similar name, this is not a charity and has nothing to do with the medals.
This link from Diabetes UK provides information about the medals and how to apply.


Ooops. I almost forgot: congratulations on an amazing achievement. It definitely deserves a medal. I hope you get it sorted soon.

 

[Juicyj]

I can't give you a medal in person but happy to give you the 'Winner' cup instead - that's a massive milestone.

How are you getting on with your T1d and what wisdom can you impart to those who struggle or need to hear from someone who has lived with it for so long ?

Thanks

 

[Hopeful34]

You could write to the Consultant at your clinic, or if that doesn't work, ask your gp to provide the necessary details.

 

[himtoo]

excellent news @Twini ..i celebrated my 51 years nearly a month ago and it is a tremendous achievement so well done.
my medal came about as a result of my dietician writingto Diabetes Uk on my behalf.
I would suggest your Consultant if your DSN keeps forgetting ( shame on them )

 

[lovinglife]

You are quite right to want your medal! Great achievement

 

[Roach70]

Hi everyone
I was promised a medal last year for being a type 1 for 50 years but still not received it n now it’s 51 years …. It may sound daft but I really want it as I feel proud about it . My diabetic nurse is aware but keeps forgetting! So is there another way I can receive it?

I haven't received a medal but it made me work out how long I have been a type 1 diabetic. It was April 1971 when I was diagnosed. Usual symptoms - raging thirst, frequent visits to the loo and constant tiredness.
I knew nothing about diabetes but thankfully my mother realised something was not right so called the Doctor. In those days Doctors visited patients who were unable to attend the surgery. I was in my 3rd year at University so was due to take my final exams. After a short period of learning about injections, testing urine etc I went back to Uni and passed my exams. No thought about telling the Uni of my recent diagnosis! In fact, this set the pattern for much of my life. I have always felt ashamed (perhaps that is the wrong word) about telling people about being diabetic. On reflection, I wish I had been more open but deep down i just wanted to be seen as a 'normal' person.
One of the biggest disappointment in my life as a diabetic is having my driving licence revoked by the DVLA earlier this year (retinopathy in both eyes but successful laser treatment has saved all but 'peripheral' vision).
Sorry if I have veered off topic but sometimes it is good to ramble on a bit. Perhaps I will mention to the Diabetic nurse about my '51' years.

 

[ElenaP]

I haven't received a medal but it made me work out how long I have been a type 1 diabetic. It was April 1971 when I was diagnosed. Usual symptoms - raging thirst, frequent visits to the loo and constant tiredness.
I knew nothing about diabetes but thankfully my mother realised something was not right so called the Doctor. In those days Doctors visited patients who were unable to attend the surgery. I was in my 3rd year at University so was due to take my final exams. After a short period of learning about injections, testing urine etc I went back to Uni and passed my exams. No thought about telling the Uni of my recent diagnosis! In fact, this set the pattern for much of my life. I have always felt ashamed (perhaps that is the wrong word) about telling people about being diabetic. On reflection, I wish I had been more open but deep down i just wanted to be seen as a 'normal' person.
One of the biggest disappointment in my life as a diabetic is having my driving licence revoked by the DVLA earlier this year (retinopathy in both eyes but successful laser treatment has saved all but 'peripheral' vision).
Sorry if I have veered off topic but sometimes it is good to ramble on a bit. Perhaps I will mention to the Diabetic nurse about my '51' years.

Congratulations on your number of years.
I am sorry about your eye-problem and having to give up driving.
As for telling people, I find that, when I do tell, I end up wishing I hadn't. There is so much ignorance about type1 that non-diabetics cannot understand why I count carbohydrates, even when I have explained. Only a few days ago, a non-diabetic family member said that I had been brainwashed because I am always talking about healthy eating. So, it will be easier if I just decline food that I'm offered, but do not explain why. Rude as that may sound.

 

[Zinadane]

I haven't received a medal but it made me work out how long I have been a type 1 diabetic. It was April 1971 when I was diagnosed. Usual symptoms - raging thirst, frequent visits to the loo and constant tiredness.
I knew nothing about diabetes but thankfully my mother realised something was not right so called the Doctor. In those days Doctors visited patients who were unable to attend the surgery. I was in my 3rd year at University so was due to take my final exams. After a short period of learning about injections, testing urine etc I went back to Uni and passed my exams. No thought about telling the Uni of my recent diagnosis! In fact, this set the pattern for much of my life. I have always felt ashamed (perhaps that is the wrong word) about telling people about being diabetic. On reflection, I wish I had been more open but deep down i just wanted to be seen as a 'normal' person.
One of the biggest disappointment in my life as a diabetic is having my driving licence revoked by the DVLA earlier this year (retinopathy in both eyes but successful laser treatment has saved all but 'peripheral' vision).
Sorry if I have veered off topic but sometimes it is good to ramble on a bit. Perhaps I will mention to the Diabetic nurse about my '51' years.

Same mindset as you @Roach70.
Live in my own bubble. Battling my own issues. 95% of people are oblivious to my T1d. 50 years of just trying to be a normal person. While in the background that constant battle of high/low, eat/inject, I'm sure one side of my brain has dedicated itself to this role
Not sure I'll be chasing my medal!

 

[Roach70]

Same mindset as you @Roach70.
Live in my own bubble. Battling my own issues. 95% of people are oblivious to my T1d. 50 years of just trying to be a normal person. While in the background that constant battle of high/low, eat/inject, I'm sure one side of my brain has dedicated itself to this role
Not sure I'll be chasing my medal!

Thanks for your response. Glad I am not alone in my feelings. The other downside to the condition is the lack of care which many NHS establishments have towards diabetics. I have moved several times round the UK and you get shuffled around between doctors practices and NHS hospitals, forever having to explain how long you have had the condition, what your blood sugar readings are like etc etc. The same questions keep getting asked! Although I accept I have to take responsibility for not keeping up to date with developments in treatment for diabetes, some of the threads on here contain so much jargon and detail it puts me off looking at the site.
One of my few successes has been the prescribing of a Freestyle Libre monitor which Norfolk Health Authority were relectant to issue to all Type 1s.
I am still unsure what blood sugar levels I should be aiming for and in the back of my mind I always regard the lower the better!

 

[Zinadane]

I think TIR is the more important thing these days. 3.9-10 is the range to be within for plus 70% of the time. Stupidly when younger I used to think that low's would help lower my hba1c.
Cgm is the game changer. First introduced in the USA 1999. Unbelievable that some t1d's in the the UK still don't qualify!

 

[Roach70]

I think TIR is the more important thing these days. 3.9-10 is the range to be within for plus 70% of the time. Stupidly when younger I used to think that low's would help lower my hba1c.
Cgm is the game changer. First introduced in the USA 1999. Unbelievable that some t1d's in the the UK still don't qualify!

Thanks for your comment but unfortunately I am lost when you use 'TIR' and 'Cgm'. I have no idea what they are. It is obviously quicker to type a comment using initials rather than words but I tend to switch off when I don't follow what is being said. I sometimes encounter this when attending diabetic clinic appointments. The use of a FreeStyle Libre monitor ( which I have had for less than a year now) has helped me focus on ranges of blood sugar levels. The last 90 days show 46 per cent 3.9 to 10 and 25 per cent between 10.1 to 13.3. I am guessing this is ok as at my last clinic appointment it was not mentioned.

 

[Deleted member 527103]

Thanks for your comment but unfortunately I am lost when you use 'TIR' and 'Cgm'. I have no idea what they are. It is obviously quicker to type a comment using initials rather than words but I tend to switch off when I don't follow what is being said. I sometimes encounter this when attending diabetic clinic appointments. The use of a FreeStyle Libre monitor ( which I have had for less than a year now) has helped me focus on ranges of blood sugar levels. The last 90 days show 46 per cent 3.9 to 10 and 25 per cent between 10.1 to 13.3. I am guessing this is ok as at my last clinic appointment it was not mentioned.

TIR is Time 8n Range
CGM is Continuous Glucose Monitor. Libre is a CGM
My diabetes team are still interested 8n HBA1C so I don't agree with the comment that TIR is more important. However, I agree TIR is important too.
There was a study using a CGM which showed that complications due to diabetes are reduced if your TIR is above 70% with no more than 5% of the time below 4mmol/l.
This is tighter than your last 90 days so it is probably worth focusing a bit more on your range. If it was me, I would start by avoiding more hypos - you are 46% in range with 25% above range, you are spending 29% of your time hypo which can risk losing your hypo awareness.
It is common to set the lower blood sugar alarm higher than 4mmol/l. This gives you a chance to stave off the hypo before it happens.
There are othee techniques to try such as basal testing - checking your basal 8slow acting insulin you 5aie once 9r twice a day)keeps your blood sugar stable in the absence of food. This allows you to adjust your "foundation" insulin.
Once this is correct, you can check your bolus (the fast acting insulin you have with meals). Your insulin to carb ratio may be wrong or your timing of the pre-bolus (how long before eating do you inject your insulin?).

This probably all sounds like a lot to work out alone. I would recommend talking to your DSN (Diabetes Specialist Nurse) about a DAFNE course. These are held at different times, sometimes with different names 8n different areas of the UK. But they are really valuable courses with others with Type 1, held by a DSN (and, 8n my case a dietician) to train us to carb count, adjust 8nsylin and learn about other things which can affect our blood sugars like exercise, alcohol and illness

 

[mansingh01]

Hi everyone
I was promised a medal last year for being a type 1 for 50 years but still not received it n now it’s 51 years …. It may sound daft but I really want it as I feel proud about it . My diabetic nurse is aware but keeps forgetting! So is there another way I can receive it?

Well done- share some tips on how you managed to keep it under control

 

[Fairygodmother]

In 2019, when I was coming up to 50 years with T1D, the Consultant asked me if I’d like a medal. I said I’d rather be prescribed a hybrid loop and all the trimmings.
He replied that his hands were tied on that, I was clearly managing ok, plus the local CCG was too mean.
Yes, I’m fortunate, I’m still here (coming up to 54 years T1D now, diagnosed aged 20), but after so many years of constant watching I’d dearly love to have the chance to put it all in the hands of a trusty bit of kit.
Anyone know if there are any developments in the implant insulin delivery system?

 

[Roach70]

TIR is Time 8n Range
CGM is Continuous Glucose Monitor. Libre is a CGM
My diabetes team are still interested 8n HBA1C so I don't agree with the comment that TIR is more important. However, I agree TIR is important too.
There was a study using a CGM which showed that complications due to diabetes are reduced if your TIR is above 70% with no more than 5% of the time below 4mmol/l.
This is tighter than your last 90 days so it is probably worth focusing a bit more on your range. If it was me, I would start by avoiding more hypos - you are 46% in range with 25% above range, you are spending 29% of your time hypo which can risk losing your hypo awareness.
It is common to set the lower blood sugar alarm higher than 4mmol/l. This gives you a chance to stave off the hypo before it happens.
There are othee techniques to try such as basal testing - checking your basal 8slow acting insulin you 5aie once 9r twice a day)keeps your blood sugar stable in the absence of food. This allows you to adjust your "foundation" insulin.
Once this is correct, you can check your bolus (the fast acting insulin you have with meals). Your insulin to carb ratio may be wrong or your timing of the pre-bolus (how long before eating do you inject your insulin?).

This probably all sounds like a lot to work out alone. I would recommend talking to your DSN (Diabetes Specialist Nurse) about a DAFNE course. These are held at different times, sometimes with different names 8n different areas of the UK. But they are really valuable courses with others with Type 1, held by a DSN (and, 8n my case a dietician) to train us to carb count, adjust 8nsylin and learn about other things which can affect our blood sugars like exercise, alcohol and illness

Sorry I have not provided you with the full correct data!
Below 3.9 4 per cent
3.9-10.0. 46 per cent
10.1-13.3. 25 per cent
Above 13.3 25 per cent
In the same period my estimated A1C is 8.2 (66 mmol/mol).

 

[himtoo]

Sorry I have not provided you with the full correct data!
Below 3.9 4 per cent
3.9-10.0. 46 per cent
10.1-13.3. 25 per cent
Above 13.3 25 per cent
In the same period my estimated A1C is 8.2 (66 mmol/mol).

the latest NICE guidelines have lowered the threshold for qualification for a pump to 7.0% ..it is worth chasing your team on this point

Project information | Hybrid closed loop systems for managing blood glucose levels in type 1 diabetes | Guidance | NICE

www.nice.org.uk

 

[himtoo]

TIR is Time 8n Range
CGM is Continuous Glucose Monitor. Libre is a CGM
My diabetes team are still interested 8n HBA1C so I don't agree with the comment that TIR is more important. However, I agree TIR is important too.
There was a study using a CGM which showed that complications due to diabetes are reduced if your TIR is above 70% with no more than 5% of the time below 4mmol/l.
This is tighter than your last 90 days so it is probably worth focusing a bit more on your range. If it was me, I would start by avoiding more hypos - you are 46% in range with 25% above range, you are spending 29% of your time hypo which can risk losing your hypo awareness.
It is common to set the lower blood sugar alarm higher than 4mmol/l. This gives you a chance to stave off the hypo before it happens.
There are othee techniques to try such as basal testing - checking your basal 8slow acting insulin you 5aie once 9r twice a day)keeps your blood sugar stable in the absence of food. This allows you to adjust your "foundation" insulin.
Once this is correct, you can check your bolus (the fast acting insulin you have with meals). Your insulin to carb ratio may be wrong or your timing of the pre-bolus (how long before eating do you inject your insulin?).

This probably all sounds like a lot to work out alone. I would recommend talking to your DSN (Diabetes Specialist Nurse) about a DAFNE course. These are held at different times, sometimes with different names 8n different areas of the UK. But they are really valuable courses with others with Type 1, held by a DSN (and, 8n my case a dietician) to train us to carb count, adjust 8nsylin and learn about other things which can affect our blood sugars like exercise, alcohol and illness

i have to disagree with you on what is more important in terms of management of type 1 diabetes.....the HBa1C standard has been around for over 20 years and is a fairly rough monitor of glycaemic control ---- people with lack of management that is barely in control with loads of spiking and dangerous lows might have an a1c similar to a fairly tightly controlled type 1 that does their best with time in range above 90% .... the time in range ( or glucose variability ) will be much lower for this person and look towards better outcomes longer term

 

[becca59]

My consultant always discusses TIR and doesn’t seem bothered with HbA1c. He looks at overall pictures of daily patterns etc. an HbA1c can hide what is really going on.

 

[Zinadane]

TIR is the new stat on the block with the advent of the CGM.
I would think that if you have good TIR then chances are you will have a reasonable hba1c (of course not guaranteed).
It is also possible to have a good hba1c with a bad TIR by having an equal amount of highs and lows.
I think any decent consultant these days should be looking at both sets of figures.
I'm not sure what the latest hba1c guideline is for t1d's?