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Fulminant type 1 diabetes

P

Pjs191184

Member
Has anyone had this diagnosis?

I’m just reading up about it tonight and I think this is me! I feel kinda at peace now knowing that I can go to my team with something that feels like a diagnosis and ask them to confirm that this is what I have!
 
Hi @Pjs191184 So what’s happening? I remember you saying you were being tested for extra antibodies - what was the result of that test? Fulminant diabetes is rare but more common in Asia. I’ve never heard of anyone being diagnosed with it where I am in the U.K. What makes you think you have it rather than classic Type 1?
 
Inka said:
Hi @Pjs191184 So what’s happening? I remember you saying you were being tested for extra antibodies - what was the result of that test? Fulminant diabetes is rare but more common in Asia. I’ve never heard of anyone being diagnosed with it where I am in the U.K. What makes you think you have it rather than classic Type 1?
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I had very rapid onset and complete destruction of my beta cells. My beta cells were like someone who’s been type 1 for years, not a few weeks. It says it’s sometimes triggered post partum, I was diagnosed 5 weeks post partum. My DKA came on within a week, I have no autoimmune changes, and I’ve had extra specialist tests for rarer changes too. No honeymoon period, and I have super high insulin dependency which was almost immediate.

Just seems to fit! I’m going to talk to the team about it when I see them later this year
 
Pjs191184 said:
I had very rapid onset and complete destruction of my beta cells. My beta cells were like someone who’s been type 1 for years, not a few weeks. It says it’s sometimes triggered post partum, I was diagnosed 5 weeks post partum. My DKA came on within a week, I have no autoimmune changes, and I’ve had extra specialist tests for rarer changes too. No honeymoon period, and I have super high insulin dependency which was almost immediate.

Just seems to fit! I’m going to talk to the team about it when I see them later this year
Click to expand...
No type 1 in the family too. I’m not East Asian, but I’m of Indian ethnicity not sure if that has any impact.
 
I would not consider the lack of Type 1 in your family as significant - I was the same in that regard.
The sudden onset seems to fit what I have read about Fulminant diabetes. However, my little reading (I am sure you have done more) did not mention high insulin dependency/insulin resistance.

I know some people find it important to have labels. For me, the importance is getting the right treatment. A label is just an added extra. I don't see the treatment for Filament Type 1 to be any different to "normal" Type 1.
 
Sorry meant high, immediately ie no honeymoon period!

True I feel the same, it’s just hard when every doc is completely baffled and keeps saying how my blood work is so strange and they don’t get what’s happening etc, I had to go for scans to see if I had pancreatic cancer with them trying to solve it what had happened too. For me it would just be nice to not kept being told that I’m a medical mystery and they have never seen what’s happened to me before everytime I see a new doc!
 
Pjs191184 said:
Sorry meant high, immediately ie no honeymoon period!

True I feel the same, it’s just hard when every doc is completely baffled and keeps saying how my blood work is so strange and they don’t get what’s happening etc, I had to go for scans to see if I had pancreatic cancer with them trying to solve it what had happened too. For me it would just be nice to not kept being told that I’m a medical mystery and they have never seen what’s happened to me before everytime I see a new doc!
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For me it was a worry they had missed something else as nothing made sense, and that’s why I kept getting sent for more and more tests. If I can get them to confirm this then maybe that peace of mind is set!
 
Sorry to hear about your rapid launch into the wacky world of T1.

Some people seem to get a honeymoon period that drags on and on for ages, but we have had others who had none to speak of, or it was very short.

But I can completely understand how you’d prefer it if clinicians around you didn’t constantly give the impression that they didn’t know what was going on! Hardly reassuring when you are looking to them for expert guidance.

Which insulins have you been offered? And have you been given a CGM?

Glad your scans for pancreatic cancer came back clear.
 
Pjs191184 said:
I had very rapid onset and complete destruction of my beta cells. My beta cells were like someone who’s been type 1 for years, not a few weeks. It says it’s sometimes triggered post partum, I was diagnosed 5 weeks post partum. My DKA came on within a week, I have no autoimmune changes, and I’ve had extra specialist tests for rarer changes too. No honeymoon period, and I have super high insulin dependency which was almost immediate.

Just seems to fit! I’m going to talk to the team about it when I see them later this year
Click to expand...

So no Type 1 antibodies? When you say your beta cells were like someone who’s been diagnosed for years, do you mean your C Peptide was very low? Did you have any signs at all during your pregnancy (I know 3 women who developed T1 in pregnancy but it was missed)?

What’s “super high insulin dependency”? Not questioning your idea at all, but I like to understand your situation and your thinking 🙂 And did you have abdominal issues prior to diagnosis?
 
Pjs191184 said:
Yeh I finally got a CGM approved after they said, your not a typical type 1 but given you beta cell results we have to treat you as one.

I’m on novorapid and tresiba
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In the UK it’s better to be diagnosed T1 than with a rare type of diabetes. T1 automatically ticks the box for eligibility for a cgm, and in the future will hopefully automatically tick the box for a pump. Rare types of diabetes don’t tick boxes and mean jumping through extra hoops to get stuff like that.
 
And to clarify that a bit more - I’m not a true T1, not sure if I’ll ever know my true type. I accepted the T1 label very willingly when it came after 15/16 years though as it ticks the right NHS box to make things smoother for me.
 
Far as I know, never heard of such a thing as fulminant diabetes. Hence know nob all about it.

Love the way someone's auto-correct calls it filament d. ! :rofl:
 
Pjs191184 said:
For me it was a worry they had missed something else as nothing made sense, and that’s why I kept getting sent for more and more tests. If I can get them to confirm this then maybe that peace of mind is set!
Click to expand...

I totally get why you want an answer and a definite label @Pjs191184 My Type 1 was atypical but it wasn’t until years later that I had additional tests looking for something different (MODY in my case) that I got that information.

Looking back at your older posts to jog my memory, I see the sudden decline you talked about:

Post in thread 'Specialist immunology tests'
http://forum.diabetes.org.uk/boards/threads/specialist-immunology-tests.114764/post-1390312

Your HbA1C might help them find an answer for you. As I understand it, they look at various aspects before settling on the fulminant label. As you’ve had lots of tests done, they might be able to give you an answer just by looking at those and comparing them with the fulminant type aspects.
 
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