Endo unsure what type I have and say I’m a complex case!

[melissaginty13]

Hi everyone, I’ve been a diabetic of some sort ( started off as type 2 ) for around 8 or 9 years. This all came about as I had leukaemia as a child and had a bone marrow transplant and chemotherapy and radiotherapy. My diabetes was firstly managed by exercise and medication but did eventually need insulin and this happened a few times where I would be yo-yoing between the two. More recently (last 8 months) I’ve been put on insulin and Ozempic , I lost over 10kg on Ozempic and needed to stop it but was always using insulin along the way as I still needed it . I’ve been very frustrated by my endocrinologist as I feel I should have a proper diagnosis at this stage of almost 10 years later . They did an antibodies test which ruled out t1 and tested to see how much insulin I produce which is around 1089 . They told me I’m more then likely not type 1 and too young to be type 2 (almost 26) I recently wanted a pump to better help manage my diabetes but was told I can’t have one as I’m not a type one which frustrated me a lot more . I would love to know if anyone had or has been in a similar situation to me and what the outcome was , I’m thinking I could be type 1.5 . I would appreciate any feedback thank you ☺️

 

[AndBreathe]

Hi everyone, I’ve been a diabetic of some sort ( started off as type 2 ) for around 8 or 9 years. This all came about as I had leukaemia as a child and had a bone marrow transplant and chemotherapy and radiotherapy. My diabetes was firstly managed by exercise and medication but did eventually need insulin and this happened a few times where I would be yo-yoing between the two. More recently (last 8 months) I’ve been put on insulin and Ozempic , I lost over 10kg on Ozempic and needed to stop it but was always using insulin along the way as I still needed it . I’ve been very frustrated by my endocrinologist as I feel I should have a proper diagnosis at this stage of almost 10 years later . They did an antibodies test which ruled out t1 and tested to see how much insulin I produce which is around 1089 . They told me I’m more then likely not type 1 and too young to be type 2 (almost 26) I recently wanted a pump to better help manage my diabetes but was told I can’t have one as I’m not a type one which frustrated me a lot more . I would love to know if anyone had or has been in a similar situation to me and what the outcome was , I’m thinking I could be type 1.5 . I would appreciate any feedback thank you ☺️

Oh my, Melissa, you've had a lot to contend with in life, but thank goodness for the medics.

One thing I would like to mention is that a lack of antibodies on the diabetes panel doesn't discount T1. It just means there were no antibodies at that time. The presence of antibodies almost certain indicates T1, so although there is no cast iron pointer from your test result, you could still, based purely on that be T1.

When was your insulin test done? Results can vary, depending on whether or not you were fasted, and if not fasted, when and what you had last eaten.

Finally, whilst 26 would be less usual for T2, unfortunately, there are increasing numbers of children (i.e. under 18) being diagnosed as T2 these days.

Did you have a c-peptide test along the way? It is another test that can help clarify the type of diabetes you have.

I'm sure others will comment in time, but I just wanted to let you know your post had been read and digested.

 

[PattiEvans]

I was initially diagnosed as T2 purely due to my age (57 at the time). It was 8 years before I managed to get a referral to an Endocrinologist. He tested CPeptide (which is the test to see how much insulin you produce) and said there would be no point in testing for antibodies as they would have gone by that time. How long after diagnosis did they do your antibody test? I was re-diagnosed T1 on the strength of the CPeptide test and due to the symptoms I had at diagnosis when I was very ill, had lost a lot of weight involuntarily and could barely walk. I have to say that since then my treatment has been like chalk and cheese from when they said I was T2.

It's probably worth asking if you can see a different Endo.

 

[Proud to be erratic]

Sorry to read of your current uncertainty @melissaginty13. I have no background experience and little knowledge with T1 and its diagnosis. But I agree with @Pattidevans that you should consider seeking a 2nd opinion. Your current status as other type is most unreasonable and as you say after 10 years it should be nailed down by now. Hopefully armed with comments from members here you can find the right vocabulary to politely insist on a 2nd opinion OR a formal confirmed diagnosis as T1 to allow you to progress into becoming eligible for a pump.

To leave you "hanging in thin air" when you are so young (relatively) is, in my lay-opinion, fundamentally wrong. Do let us know how you get on and do feel free to ask other questions that might lead to you finding different tricks and tips to help you better manage your D right now. There is a wealth of knowledge here from people who live with and manage their many different shades of D every day of the year.

 

[melissaginty13]

Oh my, Melissa, you've had a lot to contend with in life, but thank goodness for the medics.

One thing I would like to mention is that a lack of antibodies on the diabetes panel doesn't discount T1. It just means there were no antibodies at that time. The presence of antibodies almost certain indicates T1, so although there is no cast iron pointer from your test result, you could still, based purely on that be T1.

When was your insulin test done? Results can vary, depending on whether or not you were fasted, and if not fasted, when and what you had last eaten.

Finally, whilst 26 would be less usual for T2, unfortunately, there are increasing numbers of children (i.e. under 18) being diagnosed as T2 these days.

Did you have a c-peptide test along the way? It is another test that can help clarify the type of diabetes you have.

I'm sure others will comment in time, but I just wanted to let you know your post had been read and digested.

Hi I had the antibodies

I was initially diagnosed as T2 purely due to my age (57 at the time). It was 8 years before I managed to get a referral to an Endocrinologist. He tested CPeptide (which is the test to see how much insulin you produce) and said there would be no point in testing for antibodies as they would have gone by that time. How long after diagnosis did they do your antibody test? I was re-diagnosed T1 on the strength of the CPeptide test and due to the symptoms I had at diagnosis when I was very ill, had lost a lot of weight involuntarily and could barely walk. I have to say that since then my treatment has been like chalk and cheese from when they said I was T2.

It's probably worth asking if you can see a different Endo.

hi Patti thank you for your reply, I had the c peptide testing done and I produce 1089 I think mmol not to sure as I’m in Ireland and I was negative for t1 antibodies. They’ve tested for other rare types like 1.5 lads but no results on these yet . I’ve had my sugars go to about 25 mmol but never have ended up in hospital although I’ve been told I should’ve . At the beginning of my diagnosis in 2015 they took around a year or so to say I probably am t2 as they firstly just thought I had something that elevated my blood sugars whenever I got a cold or virus . She then determined I was to much of a complex case and sent me to my present endo .At this point I may ask my oncologist in a different region and hospital if there’s a different endo I can attend as I’m losing faith . I’m also sorry to hear you’ve been through the mill and hope your doing better ☺️

 

[PattiEvans]

She then determined I was to much of a complex case and sent me to my present endo .At this point I may ask my oncologist in a different region and hospital if there’s a different endo I can attend as I’m losing faith . I’m also sorry to hear you’ve been through the mill and hope your doing better ☺️

That would definitely be a good move. I'm doing fine thank you. I've had a pump now for over 10 years and of course the Libre sensor which makes life so much easier.

 

[melissaginty13]

Sorry to read of your current uncertainty @melissaginty13. I have no background experience and little knowledge with T1 and its diagnosis. But I agree with @Pattidevans that you should consider seeking a 2nd opinion. Your current status as other type is most unreasonable and as you say after 10 years it should be nailed down by now. Hopefully armed with comments from members here you can find the right vocabulary to politely insist on a 2nd opinion OR a formal confirmed diagnosis as T1 to allow you to progress into becoming eligible for a pump.

To leave you "hanging in thin air" when you are so young (relatively) is, in my lay-opinion, fundamentally wrong. Do let us know how you get on and do feel free to ask other questions that might lead to you finding different tricks and tips to help you better manage your D right now. There is a wealth of knowledge here from people who live with and manage their many different shades of D every day of the year.

Yeah I think I will ask for a second opinion if I don’t get any satisfaction after Christmas as it’s going on far to long now and it’s causing my health far to much damage. I will be sure to update this as I find out more because I find it very difficult to find any information for someone in my situation so hopefully if anyone is in my situation or similar will see this in future and get some help by it ☺️

 

[DaveB]

I've been thru a similar route. I'm still listed as T2 but after asking for a C-Peptide at my surgery i was referred to the diabetes team who found a negative GAD and C-peptide just above T1 level. Like you, my endo says I'm a 'unique' case and treats me as T1. I have always been slim and never a real T2. I don't agree that T1 only means beta cell death thru antibodies. There is evidence that viruses can cause the same damage and why not define that cause also as T1. In my case I believe it was virus driven due to a high white cell count in the year before diagnosis. Note that most T1s are late onset and less likely to be antibody driven. I'm afraid the medical profession is stuck in the same mantra and doesn't look at the evidence and join it all up so we are left with the same old T2 or T1 definitions. In practice I am treated as a T1 with insulin, Libre 2 etc so am happy on that front but I am often asked whether I'm T2 or T1 which is the wrong question.

 

[melissaginty13]

I've been thru a similar route. I'm still listed as T2 but after asking for a C-Peptide at my surgery i was referred to the diabetes team who found a negative GAD and C-peptide just above T1 level. Like you, my endo says I'm a 'unique' case and treats me as T1. I have always been slim and never a real T2. I don't agree that T1 only means beta cell death thru antibodies. There is evidence that viruses can cause the same damage and why not define that cause also as T1. In my case I believe it was virus driven due to a high white cell count in the year before diagnosis. Note that most T1s are late onset and less likely to be antibody driven. I'm afraid the medical profession is stuck in the same mantra and doesn't look at the evidence and join it all up so we are left with the same old T2 or T1 definitions. In practice I am treated as a T1 with insulin, Libre 2 etc so am happy on that front but I am often asked whether I'm T2 or T1 which is the wrong question.

Hi thank you a lot for commenting, I feel as though we are very similar, interesting that your white blood cell count is up as mine is also up and they are undergoing further testing for that but aren’t linking it to my diabetes. I am using Dexcom but I really want a pump as I think it would help me best manage my diabetes. I’m so intrigued now that u also said ur white blood cell count was high so im gonna mention it to them . I’m just very frustrated by this point and just want a definitive answer after all this time . I really appreciate u replying it’s made me feel some what better to know there are others in a similar situation to mine and we really need our fellow healthcare professionals to do something about people like us who feel as tho we’re on our own

 

[everydayupsanddowns]

Sorry you have been having such a frustrating time getting a definitive diagnosis @melissaginty13

It does sound like your diabetes has a lot more in common with T1 than anything else, particularly given your young age at diagnosis (though, of course, T1 can come on at any age!)

I was surprised when I was part of the NICE Guideline Development Group for T1 in Adults (2015) as a lay member how tricky it can be to define diabetes type - and that there aren’t really conclusive tests that ‘prove’ things either way. All the available tests just give clues and indications, but there are many chances of false negatives, and really it’s the clinical presentation that provides the clearest indication. But of course you need an experienced clinician to interpret that!

The differences in available options for different types are particularly frustrating for more unusual presentations. The way guidance works is based on clinical evidence for ‘classic’ cases of different types. Evidence for effectiveness of an intervention in T2 would not be reviewed as part of T1 guidance, because it’s the “wrong population”. From a health-economics point of view, the treatments are reviewed on whether or not they are likely to be cost effective for classic cases of the different types.

Which can make having a tick in the right box really important, where everything else about your treatment aligns more to a different type

 

[melissaginty13]

Hi everyone, I’ve been a diabetic of some sort ( started off as type 2 ) for around 8 or 9 years. This all came about as I had leukaemia as a child and had a bone marrow transplant and chemotherapy and radiotherapy. My diabetes was firstly managed by exercise and medication but did eventually need insulin and this happened a few times where I would be yo-yoing between the two. More recently (last 8 months) I’ve been put on insulin and Ozempic , I lost over 10kg on Ozempic and needed to stop it but was always using insulin along the way as I still needed it . I’ve been very frustrated by my endocrinologist as I feel I should have a proper diagnosis at this stage of almost 10 years later . They did an antibodies test which ruled out t1 and tested to see how much insulin I produce which is around 1089 . They told me I’m more then likely not type 1 and too young to be type 2 (almost 26) I recently wanted a pump to better help manage my diabetes but was told I can’t have one as I’m not a type one which frustrated me a lot more . I would love to know if anyone had or has been in a similar situation to me and what the outcome was , I’m thinking I could be type 1.5 . I would appreciate any feedback thank you ☺️

Sorry you have been having such a frustrating time getting a definitive diagnosis @melissaginty13

It does sound like your diabetes has a lot more in common with T1 than anything else, particularly given your young age at diagnosis (though, of course, T1 can come on at any age!)

I was surprised when I was part of the NICE Guideline Development Group for T1 in Adults (2015) as a lay member how tricky it can be to define diabetes type - and that there aren’t really conclusive tests that ‘prove’ things either way. All the available tests just give clues and indications, but there are many chances of false negatives, and really it’s the clinical presentation that provides the clearest indication. But of course you need an experienced clinician to interpret that!

The differences in available options for different types are particularly frustrating for more unusual presentations. The way guidance works is based on clinical evidence for ‘classic’ cases of different types. Evidence for effectiveness of an intervention in T2 would not be reviewed as part of T1 guidance, because it’s the “wrong population”. From a health-economics point of view, the treatments are reviewed on whether or not they are likely to be cost effective for classic cases of the different types.

Which can make having a tick in the right box really important, where everything else about your treatment aligns more to a different type

Hi thank you for commenting ☺️ I agree I have more in common with t1 then t2 but I do have a few things in common with t2 as well which makes me think I could be t1.5 . It’s really frustrating that my clinic won’t give me a pump as they are saying technically I’m not a t1 and when they do testing again , and all the results are back like for eg the antibodies test is already back and it’s negative and the c peptide test is showing evidence that I produce insulin. I was on call to a diabetic nurse the other day and I asked about some of the results as I only had them about 6 weeks ago and that’s when they told me about them , she said it’s really good that I’m producing so much insulin which makes me feel as though they are gonna tell me it’s definitely not t1 . You really have to be an advocate for your own health these days but clinics and doctors can make that difficult by making you feel like your a nuisance to them or that they know more about it then you do about your own body ! While they know more about diabetes they don’t seem to know what type of diabetes I have and that makes me think they aren’t looking at the bigger picture and just looking at those two tests that I mentioned. I’m going to mention it to my oncology team after Christmas and see if they maybe have a different endo in their hospital system because it’s causing me more damage and discomfort being under my current endo . I do think my endo needs to be strong and say that I’m more likely type 1 or t1.5 then t2 but unfortunately I don’t think she will. I was denied a pump because of this and like I said it’s affecting me not just in the long term but also the short term. She’s the main doctor in the clinic but before I see her I see a younger doctor and going off my symptoms many assume I’m t1 . Thank you again for commenting I really love getting everyone’s opinion I appreciate it ☺️

 

[melissaginty13]

UPDATE: got a call from my diabetes nurse on Friday and she said that I don’t have t1 or t2 , in which I asked could I be t1.5 and she said possibly or type 3c or a completely new type of diabetes that I have invented myself now while I find this incredibly annoying and frustrating I can still see the funny side to it as of course I could create a new type ‍♀️ she went on to say it could take years to diagnose me and because I produce insulin they rule out giving me an insulin pump for the time being. I will still seek a second opinion off my other hospital and see what they think . Thanks to everyone for their response and opinions I appreciate it ☺️