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Ettenna67

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Hi,
I was diagnosed T2 last year with an HbA1C of 59 but have not been on any medication. Managed to get it down to 37 by low carb eating
I took part in the T1DRA research (my daughter is T1) and my initial results came back positive for GAD and ZnT8 antibodies. I did a confirmation sample and that came back the same indicating that I am actually T1 LADA.
I had no symptoms that I had diabetes at all so the diagnosis of T2 was a shock.
Obviously I will be trying to see my GP next week but the research nurse said that they would send me a letter stating that I am positive for the antibodies - is it worth waiting for this letter?
I am self-funding a Dexcom ONE currently and have noticed that my levels are gradually creeping up (not to dangerous levels) despite eating sensibly.
Any words of wisdom?
 
Welcome @Ettenna67 🙂 How lucky your antibodies were spotted! Type 1 tends to come on more slowly in adults. I wonder why they didn’t test you for Type 1 straightaway as you have a daughter with it. As a Type 1, you’ll have the Dexcom One or Libre funded 🙂

I wouldn’t bother waiting for the letter if your numbers are creeping up. What I would do though, is eat normally before you see the GP and let them see your numbers. Low carb can mask the truth of Type 1 in adults and delay appropriate treatment (early introduction of insulin is thought to preserve the remaining beta cells for longer). There are lots of Type 1s here who were diagnosed as adults, so you’re not alone.
 
Inka said:
Welcome @Ettenna67 🙂 How lucky your antibodies were spotted! Type 1 tends to come on more slowly in adults. I wonder why they didn’t test you for Type 1 straightaway as you have a daughter with it. As a Type 1, you’ll have the Dexcom One or Libre funded 🙂

I wouldn’t bother waiting for the letter if your numbers are creeping up. What I would do though, is eat normally before you see the GP and let them see your numbers. Low carb can mask the truth of Type 1 in adults and delay appropriate treatment (early introduction of insulin is thought to preserve the remaining beta cells for longer). There are lots of Type 1s here who were diagnosed as adults, so you’re not alone.
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They probably just assumed that I’m T2 as I am well over 50 and overweight
 
Ettenna67 said:
They probably just assumed that I’m T2 as I am well over 50 and overweight
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At least you’ve got the correct diagnosis now 🙂 There are a number of people here who were diagnosed Type 1 at a similar age. @rebrascora is the first who springs to mind, and possibly @Robin and @SB2015 amongst others.
 
Welcome to the forum @Ettenna67 from another late starter with T1 (aged 53 at diagnosis)
I am pleased that they have picked up your antibodies before the onset of symptoms. The process of destruction of our beta cells takes a bit of time in those of us that are older, so you may have quite a few beta cells remaining. These can be protected by getting early introduction of an insulin regime, even if you start with tiny doses. Most people are now started on the Basal/bolus regime which I suspect you are already familiar with as your daughter will be on this.

Even though your daughter has had T1 I suspect that she is managing things herself and there is no reason why you shouldn’t be full of questions. Just ask anything that arises, and know nothing is considered silly on here.
 
Hi and welcome from me too.

Yes, I was another late starter at 55yrs old. In my case the onset was actually really quick. I went out for a meal one night and left the pub feeling thirsty.... after I got home the thirst got worse and worse and I spent all night and the next 2 weeks drinking pint after pint of water and consequently weeing for England day and night, until I was forced to contact the docs and get a blood test. Thankfully because I suspected diabetes I cut right back on my sugar intake and drank almost exclusively water and that probably saved me from a DKA, I too was assumed to be Type 2 and started on oral meds and embarked on a progressively lower carb diet until there was nothing else I could strip back but my HbA1c went up instead of down. Thankfully I had a switched on DN who was having case conferences about me with the consultant as she suspected there was a rabbit off with my diagnosis and I was started on insulin and subsequently tested positive for GAD with borderline low C-peptide and Type 1 was confirmed.
Really pleased that your Type 1 was picked up by screening as some members here on the forum endured years of Type 2 treatment before their misdiagnosis was spotted and and corrected and I am sure there are many more Type 1s still wrongly diagnosed as Type 2 because they developed it later in life.

I consider myself very fortunate to have developed it so late in life and my heart goes out to youngsters and particularly teenagers having to cope with it as well as all the angst and pressures of being that age with exams and getting your first job and find your place in the world. etc. My thoughts are that perhaps menopause may be the trigger for some of us getting it so late in life. Interestingly my sister who is 14 months older than me developed a different autoimmune condition around the same time as I got Type 1 and my mother had developed RA (which is autoimmune) around the same age.

Anyway, I am really pleased that you have found the forum as it is a goldmine of knowledge, practical experience (although I imagine you have quite a bit of that already with your daughter) and support. It takes a bit of getting your head around at first but it gradually gets easier as you will no doubt know. Diabetes is surprisingly individual in how it affects each of us, so you may have some surprises in how your body responds, compared to how your daughter's does, particularly if you have a slow onset. Hope you get some good support from your medical professionals and lean on us here on the forum if you need any help, questions answered or just a good moan, because we all get a bit chewed off from time to time and being able to offload to people who totally "get it" can be such a relief! :D
 
Well I spoke with my GP this morning and he told me “it’s a bit outside my knowledge, I’ll pass this on to our diabetes nurse”. He told I need to be kept off insulin as long as possible and that I need to wait for the letter from the research group. Feel a bit let down tbh but I guess there’s not a lot else that he can do as I’m not symptomatic of anything. I’ll just have to wait for the diabetes nurse. On the bright side,I got a sample of the Dexcom One+ from a rep yesterday
 
Ettenna67 said:
On the bright side,I got a sample of the Dexcom One+ from a rep yesterday
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Hello @Etenna67, so far I know of the existence of Dexcom One +, but have not read anything from a real user (rather than a Dexcom marketeer). Would you consider trying this 10 day device and report progress to us on the Forum please?
 
Proud to be erratic said:
Hello @Etenna67, so far I know of the existence of Dexcom One +, but have not read anything from a real user (rather than a Dexcom marketeer). Would you consider trying this 10 day device and report progress to us on the Forum please?
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I certainly will. It looks much more like the Libre2 and is all in one rather than having a separate transmitter. I’ve got another 6 days on my current Dexcom One then will try the new one
 
Ettenna67 said:
Well I spoke with my GP this morning and he told me “it’s a bit outside my knowledge, I’ll pass this on to our diabetes nurse”. He told I need to be kept off insulin as long as possible and that I need to wait for the letter from the research group. Feel a bit let down tbh but I guess there’s not a lot else that he can do as I’m not symptomatic of anything. I’ll just have to wait for the diabetes nurse. On the bright side,I got a sample of the Dexcom One+ from a rep yesterday
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When you get the letter hopefully it will contain advice or at least a contact. Most GP surgery nurses know very little about Type 1/LADA so I wouldn’t be relying on them for any information.
 
Inka said:
When you get the letter hopefully it will contain advice or at least a contact. Most GP surgery nurses know very little about Type 1/LADA so I wouldn’t be relying on them for any information.
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Looks like some GPs as well....
 
Perhaps he has the mindset of thinking insulin is a disaster cos you have to tell DVLA and instantly resign from driving articulated vehicles/the Orient Express/Concorde?
 
trophywench said:
Perhaps he has the mindset of thinking insulin is a disaster cos you have to tell DVLA and instantly resign from driving articulated vehicles/the Orient Express/Concorde?
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He told me that insulin will put weight on (I am already overweight!)
 
Ettenna67 said:
He told me that insulin will put weight on (I am already overweight!)
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That’s a misconception IMO. Everyone on the planet is ‘on insulin’ (including those who are still fortunate enough to be able to make their own) and not all of them gain weight.

Insulin can be involved in conversion/storing of food energy as fat reserves, but only where there is excess energy to store.

There are several members of the forum, including me, who have been taking exogenous insulin for years (more than 30 in my case) with no automatic weight gain. I’m the same weight now that I was in my 20s.

I have gained and lost weight over the years, but that has been down to how much I am eating and how active I am, not the taking of insulin to process the food.

I believe there is also research that suggests earlier onset of insulin can help support the remaining beta cells in LADA, rather than burning out the last few valiantly trying to steady the ship and all working double-shifts because of their reduced number.

In your shoes I’d want to start on insulin, even if only on small doses, and give my remaining beta cells a bit of a breather 🙂
 
IMG_8712.jpeg

Got my results today so at least I’ve got something to prove to the GP/diabetes nurse!
 
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