My diabetes diagnosis has changed!

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MarinaDE

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I've been posting in this forum since August. I live in Germany, but was on holiday in the UK when I felt extremely ill and went to a private doctor to be tested. The results came back that afternoon — diabetes. All my blood results were so terrible that I was packed off to an endocrinologist immediately. Just over a decade ago, I'd had my pancreas resected because of cancer, so the provisional diagnosis was Type 3c.

I saw a German endocrinologist last week and he did abdominal imaging to confirm the diagnosis, and was really surprised to see that the surgery had only taken about 10-15% of my pancreas, and the remainder looked healthy. The next thing that happened was a Type 1 antibodies test.

Today it came back positive. I'm Type 1! I was flabbergasted, because I'm 50. They told me at the clinic that they have seen many patients over the age of 50 in the past year diagnosed with Type 1. There's something of a minor epidemic going on, all over the world. My clinic alone has seen 30 (30!!!!) new patients, all of whom are middle aged. The current theory is that Covid has triggered the disease.

Just incredible. But there it is!




Long story
 
Hi Marina,
Glad you managed to get a diagnosis and that only 10-15% of your Pancreas seems damaged so is still functioning but your Beta cells are not producing the insulin so from that point of view Type 1 is not that different from 3c just a different cause.
Have you have avoided the Pancreas Exocrine Insufficiency stuff which can complicate things
 
Interesting @MarinaDE It’s good you’ve got a definite answer. The oldest person diagnosed with Type 1 was in their 90s (way before Covid) and more adults than children are diagnosed with Type 1. There are a number of people here diagnosed at a similar age to you. @rebrascora and @Robin are the first two that spring to mind but there are more.
 
I think what I'm so surprised about is the sheer number of new patients. The clinic nurse said they were surprised, too — I live in a small town, so 30 new diagnoses in one year is an enormous spike.

The BAD thing is that they took me off the tablet/insulin combination the London doctor recommended, and said to use long-acting and bolus insulin, and immediately everything went haywire. I had my first hypo, which was frankly terrifying. Thankfully I had some glucose tablets handy.

I have snuck back on to the tablets and off the bolus insulin and instantly everything settled down, so I will keep using the tablets until they run out.

@Wendal no sign of pancreatic insufficiency yet, which is great. The one big change since I embarked on this fun voyage is that I am not very hungry any more and get full very fast. My weight is dropping off and all my clothes look baggy and sh*t. I don't know if that means anything or if it's temporary.
 
@Inka is right, there are quite a few of us on here, I was diagnosed with Type 1 aged 51, long before Covid had reared it’s head. Another who springs to mind is @SB2015 .
 
I'm not doubting that people get diagnosed when they're older, but am just remarking on an unusual wave that is being reported, both anecdotally in my local area, and also in the literature. It's been known for a long time that viruses can trigger latent autoimmune diseases, and there is a real possibility that Covid is playing that role with Type 1.
 
Glad you’ve got a definitive diagnosis at last! But a bit of a shame that it has involved resetting your meds, which obviously takes some getting used to.

Of course long-term it will be basal:bolus that you will want to be on - as it’s the most flexible system for type 1 management - but I can understand how frustrating it must have been to have everything you were used to and had adjusted to turned upside down!

It is odd that there‘s such a flurry of diagnoses with T1 in later life isn’t it? I don’t know if there is a similar surge in youngsters too?
 
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MarinaDE said:
I think what I'm so surprised about is the sheer number of new patients. The clinic nurse said they were surprised, too — I live in a small town, so 30 new diagnoses in one year is an enormous spike.

The BAD thing is that they took me off the tablet/insulin combination the London doctor recommended, and said to use long-acting and bolus insulin, and immediately everything went haywire. I had my first hypo, which was frankly terrifying. Thankfully I had some glucose tablets handy.

I have snuck back on to the tablets and off the bolus insulin and instantly everything settled down, so I will keep using the tablets until they run out.

@Wendal no sign of pancreatic insufficiency yet, which is great. The one big change since I embarked on this fun voyage is that I am not very hungry any more and get full very fast. My weight is dropping off and all my clothes look baggy and sh*t. I don't know if that means anything or if it's temporary.
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Hi Marina,
Hopefully they will sort out your regime soon.You losing weight,getting full fast,digestive issues can be very indicative of exocrine issues and given your pancreas history it was very suggestive of Type 3c.
I know my CT scan ( not sure if you had a abdominal US) indicated a lot of exocrine cell necrosis but was not given a specific indication of how much of Pancreas was still working as not sure a CT measures that.
 
Hi @MarinaDE
Inhave not read the articles you have given us links to, but I can see why there may be a greater number of diagnoses for T1 in older people. Our T1 usually develops more slowly (maybe our beta cells are made of stronger stuff, or the antibodies are more sluggish - I know that is not scientific at all). The destruction may take a year or so or even longer. We are often diagnosed when we contract an illness, which then requires our bodies to make loads more insulin as our glucose production rises (as it does with anyone). Our remaining beta cells are put under strain and finally give up leading to ketoacidosis. With COVID many more people caught more extreme infections, so put beta cells under strain. This may have accelerated people who were somewhere along the line of developing their T1 and consequently increased the rate of diagnosis. Or people were given more blood tests and the T 1 was picked up earlier. Will this have a subsequent dip in numbers in the next few years. Just an idea.

I am pleased that you now have a correct diagnosis. Certainly moving to a basal/bolus regime will make life more flexible but it takes a bit of getting used to . There is loads of experience on here to tap into so fire away with any questions.
 
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