Ongoing investigations to find out what type I am [emoji21]

[Melginty13]

Hey everyone I’m 26 from Ireland and have been a diabetic for 10 ish years now. I was first told I was a diabetic as a 15 year old after having a bone marrow transplant it’s thought that because of the treatment during that time damaged my pancreas . I’ve been to different endos as they deemed me a quite difficult case . My first endo wasn’t sure that I was diabetic so sent me to a specialist that actually still don’t know 8 years later which is frustrating I should also mention I have fatty liver and I’m have hyperthyroidism (born without a thyroid) over the last few years my endo has thought I’m a type 2 or so I thought but as they always say it was unlikely because of my young age of 15 . I was put on metformin and it didn’t agree with me so I was put on Diaglic I believe it was called which didn’t really help to which I was put onto insulin for roughly a year . For whatever reason I was then taken off insulin again and put back on tablets to manage my diabetes and told to diet . During lockdown I changed my lifestyle and got my hba1c down to pre diabetic levels. My sugar levels over the course of the next few months went up as I didn’t maintain a healthy lifestyle and was put on insulin again roughly a year ago along with Ozempic .ozempic really helped me and I lost around 10kg so I needed to be taken off it due to extreme weight loss but during this time I was still needing insulin. I’ve been really frustrated the last few months as it’s approaching 10 years and I asked my endo for an insulin pump in which I was told no as they don’t know what type I am . I asked for further tests as I want this put to bed and want a diagnosis finally . I believe they did a c pep test and I produce 1073 (not sure what units ) of insulin and I have been negative for type 1 antibodies. I’ve seen people produce insulin and be negative for antibodies but still be type 1 . I was speaking to my diabetes nurse recently and she says although I’m negative now for type one different antibodie testing becomes available all the time and I’ll always be tested for them so they can’t rule out type one altogether. They also said I may have a type of diabetes that no one even knows about yet and also mentioned type 3 and 3c or 1.5.
Is anyone is a similar situation to me ?
Thank you

 

[EllieM]

Hi @Melginty13 and welcome to the forums.
Unfortunately there are a lot of different measuring units used for cpeptide so I have no idea whether your result is high or low. I agree that given the variety of T1 antibodies possible the lack of them doesn't prove you aren't T1 but it would be a real help to know whether your cpeptide test is low or high, though I hasten to say that we aren't allowed to diagnose, just give our own experiences and helpful links (if we can find them).

And if you thought T1, T2 and T3c weren't confusing enough there is also MODY, a genetic form of diabetes which is usually found in families with many diabetics, has many many different variants, and needs genetic testing to diagnose.

I empathise with your frustration at the lack of a definite diagnosis and wish you luck with your search for an answer.

Once more, welcome.

 

[oldgreymare]

Hey everyone I’m 26 from Ireland and have been a diabetic for 10 ish years now. I was first told I was a diabetic as a 15 year old after having a bone marrow transplant it’s thought that because of the treatment during that time damaged my pancreas . I’ve been to different endos as they deemed me a quite difficult case . My first endo wasn’t sure that I was diabetic so sent me to a specialist that actually still don’t know 8 years later which is frustrating I should also mention I have fatty liver and I’m have hyperthyroidism (born without a thyroid) over the last few years my endo has thought I’m a type 2 or so I thought but as they always say it was unlikely because of my young age of 15 . I was put on metformin and it didn’t agree with me so I was put on Diaglic I believe it was called which didn’t really help to which I was put onto insulin for roughly a year . For whatever reason I was then taken off insulin again and put back on tablets to manage my diabetes and told to diet . During lockdown I changed my lifestyle and got my hba1c down to pre diabetic levels. My sugar levels over the course of the next few months went up as I didn’t maintain a healthy lifestyle and was put on insulin again roughly a year ago along with Ozempic .ozempic really helped me and I lost around 10kg so I needed to be taken off it due to extreme weight loss but during this time I was still needing insulin. I’ve been really frustrated the last few months as it’s approaching 10 years and I asked my endo for an insulin pump in which I was told no as they don’t know what type I am . I asked for further tests as I want this put to bed and want a diagnosis finally . I believe they did a c pep test and I produce 1073 (not sure what units ) of insulin and I have been negative for type 1 antibodies. I’ve seen people produce insulin and be negative for antibodies but still be type 1 . I was speaking to my diabetes nurse recently and she says although I’m negative now for type one different antibodie testing becomes available all the time and I’ll always be tested for them so they can’t rule out type one altogether. They also said I may have a type of diabetes that no one even knows about yet and also mentioned type 3 and 3c or 1.5.
Is anyone is a similar situation to me ?
Thank you

Hi @Meginty13,

How frustrating for you!

Perhaps it is helpful to know that age of onset is increasingly considered a less relevant diagnostic tool to differentiate between Type 1 and Type 2 diabetes. Sadly the incidence of T2 in young children is rising alarmingly, while T1 is no longer called 'juvenile onset' diabetes as this autoimmune condition can manifest at any age.

I think your c-peptide result may be in pmol/L. Was this a fasted blood test? As @EllieM says, we can't offer a diagnosis based on your results, but if it helps, my experience was -

At initial diagnosis (age 52!) my c-peptide was 246 Low (normal ref range 364-1655 pmol/L) and GADAb65 was 76 High (normal ref range 0.0 - 0.8 U/ml) So my first endo concluded that I was a T1 (the autoimmune condition) and I've been on insulin ever since. As I still had a small amount of insulin production, nowadays this could also be considered LADA or T1.5, but my then endo didn't use these terms.

13 years later I was retested (for research, not diagnostic purposes) and my results were c-peptide undetectable (i.e., none) and GADAb65 was 1418 U/ml (!!!). I've never been tested for other antibodies.

It is encouraging that your diabetics team are supportive and are willing to continue testing for you going forward, so hopefully you may get the answers you're looking for in the future.

It is perhaps even more encouraging that you have been able to control your BGs down to pre diabetic levels through lifestyle changes. Is this something you can work on again going forward?

Best of luck!

 

[Lamont D]

Just to let you be aware that there are so many different types within the T2 diagnosis, and many more that are metabolic conditions such as your being born without a thyroid.
I was prediabetic, then misdiagnosed T2, then eventually found to have RH.
Insist on the tests, and find a specialist that has dealt with similar symptoms.
Most GP's dog have the training in these types of conditions.

Keep fighting for a true diagnosis, having been frustrated, as I was, a knowledgeable specialist is important.

Best wishes, let us know how you get on.

 

[Melginty13]

Hi @Melginty13 and welcome to the forums.
Unfortunately there are a lot of different measuring units used for cpeptide so I have no idea whether your result is high or low. I agree that given the variety of T1 antibodies possible the lack of them doesn't prove you aren't T1 but it would be a real help to know whether your cpeptide test is low or high, though I hasten to say that we aren't allowed to diagnose, just give our own experiences and helpful links (if we can find them).

And if you thought T1, T2 and T3c weren't confusing enough there is also MODY, a genetic form of diabetes which is usually found in families with many diabetics, has many many different variants, and needs genetic testing to diagnose.

I empathise with your frustration at the lack of a definite diagnosis and wish you luck with your search for an answer.

Once more, welcome.

Hi Ellie thank you for your reply I think the c peptide test must’ve been pmol/L so they said I produce so much insulin which is why they are concerned as to why it’s not working. They know I’m insulin resistant but they still say it doesn’t match what they’re seeing when I’m producing so much and on insulin also . I’m currently taking 22 units of xultophy and 9 units with corrections for breakfast lunch dinner and snacking but my sugars are still always above 10 and when I eat even after 2 hours they are about 17 . Yeah I knew about all the different types through researching so I can only imagine how difficult it is for endos these days . I don’t have any type 1 diabetes in my family apart from my grandmother who has type 2 . As I’ve had cancer treatment they think my pancreas was damaged from the treatment so that’s why they don’t think I’m type 2 aswell . Thank you for your reply I appreciate it

 

[Melginty13]

Just to let you be aware that there are so many different types within the T2 diagnosis, and many more that are metabolic conditions such as your being born without a thyroid.
I was prediabetic, then misdiagnosed T2, then eventually found to have RH.
Insist on the tests, and find a specialist that has dealt with similar symptoms.
Most GP's dog have the training in these types of conditions.

Keep fighting for a true diagnosis, having been frustrated, as I was, a knowledgeable specialist is important.

Best wishes, let us know how you get on.

Hi Lamont thanks for your reply as I used to have frequent blood tests as a child for my thyroid levels I don’t think diabetes was ever a problem but then again I’m not sure if they would’ve checked for it but having been diagnosed with cancer it became more apparent with having full blood counts done . I’ll defo mention it to my endo thank you for your comment I appreciate it

 

[Melginty13]

Hi @Meginty13,

How frustrating for you!

Perhaps it is helpful to know that age of onset is increasingly considered a less relevant diagnostic tool to differentiate between Type 1 and Type 2 diabetes. Sadly the incidence of T2 in young children is rising alarmingly, while T1 is no longer called 'juvenile onset' diabetes as this autoimmune condition can manifest at any age.

I think your c-peptide result may be in pmol/L. Was this a fasted blood test? As @EllieM says, we can't offer a diagnosis based on your results, but if it helps, my experience was -

At initial diagnosis (age 52!) my c-peptide was 246 Low (normal ref range 364-1655 pmol/L) and GADAb65 was 76 High (normal ref range 0.0 - 0.8 U/ml) So my first endo concluded that I was a T1 (the autoimmune condition) and I've been on insulin ever since. As I still had a small amount of insulin production, nowadays this could also be considered LADA or T1.5, but my then endo didn't use these terms.

13 years later I was retested (for research, not diagnostic purposes) and my results were c-peptide undetectable (i.e., none) and GADAb65 was 1418 U/ml (!!!). I've never been tested for other antibodies.

It is encouraging that your diabetics team are supportive and are willing to continue testing for you going forward, so hopefully you may get the answers you're looking for in the future.

It is perhaps even more encouraging that you have been able to control your BGs down to pre diabetic levels through lifestyle changes. Is this something you can work on again going forward?

Best of luck!

Hi @oldgreymare thank you for your response yeah I knew about it being less relevant with the age nowadays. I think my c pep was pmol/L and was considered high insulin production and along with that I tested negative for any antibodies for type one . I only spoke to a nurse yesterday about it as they were done recently but she initially said that they can rule out type 1 because of the tests and then said they can’t rule out type one because there’s always new antibodie testing becoming available so that confused me and kinda put me back to square one of not knowing what type I am. So they said not type 2 and don’t think your type 1 so they aren’t sure what type I am . It’s more frustrating as I asked for a pump and they said they can’t give me one as they are unsure as to the type I am which I appreciate it takes time but I can’t help but be frustrated by it . I wasn’t told to fast for my tests as it was just something that I requested as that’s the time I asked for the pump so it wouldn’t have been a fasting test . I think it’s going to take a lot more patience with my team and focusing on having a healthy lifestyle. I have a lot of muscle wastage from my type of diabetes so it’s a dream of mine to get that muscle back so that will defo require lifestyle changes