Possible LADA or MODY

[SB.25]

Hi all another update as I've been to see the consultant earlier today. If I am honest, it was a very confusing experience. He didn't tell me everything very clearly. But I've been put on new medicine to try for a month (Forxiga) alongside my other ones which now looking at the side effects, I'm not really looking forward to as I've already experienced most of them due to high blood sugar levels!

I'll also be getting tested for MODY, but the consultant said himself that it's unlikely my mum has it as it's clear she has type 1, so how would I have it, as it's passed from parent to child through a gene mutation? Very confusing.

He pretty much said that I either have MODY or type 2, which contradicts everything I've been told, as at least three diabetic nurses have told me they think it's likely I have LADA or MODY, the specialist diabetic nurse made it clear to me that I in no way can be a type 2 due to my age and although I am overweight, it's not to the point of it causing type 2. The consultant even said my sugar levels weren't that bad despite the hba1c being 70, a massive increase from the 47 I had in May.

Anyway I thought I'd update you all as you've all been very helpful with your advice and maybe my current situation could help someone else out!

Hiya, I am also awaiting a formal diagnosis, but will be seeing my consultant on Friday to hopefully get some answers.
My HBa1C was 103 on diagnosis and BMI only 21 - so it would also be very unusual for me to be a type 2.

I completely get how frustrating this whole thing is!

Either way I have been put on insulin so I doubt that they would now take me off of it whatever the diagnosis!

 

[WhiteCat27]

Hiya, I am also awaiting a formal diagnosis, but will be seeing my consultant on Friday to hopefully get some answers.
My HBa1C was 103 on diagnosis and BMI only 21 - so it would also be very unusual for me to be a type 2.

I completely get how frustrating this whole thing is!

Either way I have been put on insulin so I doubt that they would now take me off of it whatever the diagnosis!

Oh dear that doesn't sound good especially with how high that hba1c is! I hope you get answers soon. My consultant was considering putting me on insulin, but considering I am already overweight (which is partially due to other health issues I'm having), I'm guessing he wanted to try something else first especially since this new medicine can help to lose weight.

It really does suck being left in limbo land but at least you're secure with your insulin for the moment!

 

[SB.25]

Oh dear that doesn't sound good especially with how high that hba1c is! I hope you get answers soon. My consultant was considering putting me on insulin, but considering I am already overweight (which is partially due to other health issues I'm having), I'm guessing he wanted to try something else first especially since this new medicine can help to lose weight.

It really does suck being left in limbo land but at least you're secure with your insulin for the moment!

No I was shocked to even find out I was diabetic! As I'm relatively slim and young (26), I didn't expect to get diabetes now. I did suspect I may get it when I am older as my mum has it (she got it at 40 and was not overweight).

Yes I really didn't want to go on the insulin, but I'm glad I did as I actually feel better!

Lets hope we both get some answers to everything soon!

 

[WhiteCat27]

No I was shocked to even find out I was diabetic! As I'm relatively slim and young (26), I didn't expect to get diabetes now. I did suspect I may get it when I am older as my mum has it (she got it at 40 and was not overweight).

Yes I really didn't want to go on the insulin, but I'm glad I did as I actually feel better!

Lets hope we both get some answers to everything soon!

Looks like we're both in very similar situations then! It came as a shock for me too as my mum is a type 1 who got it at 10, but was told in the 80s that her diabetes wasn't genetic, she's now wondering if that was wrong. Even though diabetes is a pain, it's better to get it treated rather than ignoring the issue. Me too and I'm glad to hear you're feeling better!

 

[SB.25]

Looks like we're both in very similar situations then! It came as a shock for me too as my mum is a type 1 who got it at 10, but was told in the 80s that her diabetes wasn't genetic, she's now wondering if that was wrong. Even though diabetes is a pain, it's better to get it treated rather than ignoring the issue. Me too and I'm glad to hear you're feeling better!

So appointment with consultant wasn’t exactly great, but also wasn’t terrible.

Effectively I don’t produce enough of my own insulin - this was confirmed by the c-peptide as it’s low but not as low as a type 1.
The anti bodies were negative - but doesn’t necessarily mean it’s not type 1 as they can’t test for all anti bodies.

The next step is to test for MODY. But within the past 4 years this consultant (who covered Bromley and Croydon) has never put anyone forward for the tests as there hasn’t been a need. He said when he worked at Kings College only a few people there were tested too! He’s finding out what the process is and will leave me the form to go get the bloods taken. Because of my unusual case they also asked if they could use my samples for research and further testing.

If the MODY is negative then I may just be an odd bod who sits in the middle of type 1 and 2.

In the meantime, they have started me on a basal bolus regime to try to get my bloods more in sync without the big highs and lows. He said my nighttime insulin is probably at the maximum I can take in relation to my BMI.

So not really much further forward, but he did say I’ve done nothing to cause all of this and it would have happened if I was even thinner or bigger and my life style didn’t cause this - so that made me feel better.

 

[WhiteCat27]

So appointment with consultant wasn’t exactly great, but also wasn’t terrible.

Effectively I don’t produce enough of my own insulin - this was confirmed by the c-peptide as it’s low but not as low as a type 1.
The anti bodies were negative - but doesn’t necessarily mean it’s not type 1 as they can’t test for all anti bodies.

The next step is to test for MODY. But within the past 4 years this consultant (who covered Bromley and Croydon) has never put anyone forward for the tests as there hasn’t been a need. He said when he worked at Kings College only a few people there were tested too! He’s finding out what the process is and will leave me the form to go get the bloods taken. Because of my unusual case they also asked if they could use my samples for research and further testing.

If the MODY is negative then I may just be an odd bod who sits in the middle of type 1 and 2.

In the meantime, they have started me on a basal bolus regime to try to get my bloods more in sync without the big highs and lows. He said my nighttime insulin is probably at the maximum I can take in relation to my BMI.

So not really much further forward, but he did say I’ve done nothing to cause all of this and it would have happened if I was even thinner or bigger and my life style didn’t cause this - so that made me feel better.

At least your consultant is being considerate and also taking the approiate tests to do for you! I'll also be getting tested for MODY next week, so we'll both probably find out in a few months.

The process for testing for MODY is they send the blood sample to a specialist place in Exeter, where they do dna testing on the sample to see what gene mutation you have. This why it can take a few months, as it can take longer if they have to check through every gene.

I hope it goes well for you though! It really does suck though that we're left so confused currently.

 

[SB.25]

At least your consultant is being considerate and also taking the approiate tests to do for you! I'll also be getting tested for MODY next week, so we'll both probably find out in a few months.

The process for testing for MODY is they send the blood sample to a specialist place in Exeter, where they do dna testing on the sample to see what gene mutation you have. This why it can take a few months, as it can take longer if they have to check through every gene.

I hope it goes well for you though! It really does suck though that we're left so confused currently.

Yes exactly he is trying. I may just never fit into a category lol!

Started my quick acting insulin today so let’s hope I manage to carb count correctly!

Hope you have a nice weekend

 

[WhiteCat27]

Yes exactly he is trying. I may just never fit into a category lol!

Started my quick acting insulin today so let’s hope I manage to carb count correctly!

Hope you have a nice weekend

I hope it goes well for you and you have a nice weekend too!!

 

[WhiteCat27]

Since i saw it mentioned earlier, i managed to dig up my old results from the private GAD and c peptide test. This test was done when I first got diagnosed in September/October 2017 when my hba1c was only 50. The first row is the c peptide test and the second is the GAD test. (The scribbled out part is for another test, I didn't want people to get confused lol!) Thought I'd post it to see if anyone had any thoughts

 

[SB.25]

Since i saw it mentioned earlier, i managed to dig up my old results from the private GAD and c peptide test. This test was done when I first got diagnosed in September/October 2017 when my hba1c was only 50. The first row is the c peptide test and the second is the GAD test. (The scribbled out part is for another test, I didn't want people to get confused lol!) Thought I'd post it to see if anyone had any thoughtsView attachment 31344

Hiya, I’m not sure what my levels were for my GAD but from doing a conversion of my c-peptide I think my level was 1.2 which I was told is low. Is the section on the right hand side of the page the range you should be in?

 

[Antje77]

n the meantime, they have started me on a basal bolus regime to try to get my bloods more in sync without the big highs and lows. He said my nighttime insulin is probably at the maximum I can take in relation to my BMI.

Your signature says you take 14 units of long acting. Which isn't very much. Is that still right? Also, there is no maximum of insulin, really

 

[SB.25]

Your signature says you take 14 units of long acting. Which isn't very much. Is that still right? Also, there is no maximum of insulin, really

Hiya,

It changed as of yesterday, I started on Humalog 10g to 1 unit.

I’ve been told I can’t take any more of the long acting due to my height and weight apparently.

I’ll change my signature later - thanks for the reminder

 

[Antje77]

I’ve been told I can’t take any more of the long acting due to my height and weight apparently.

That's not right. Could you get a second opinion? Have you been told this by an endocrinologist?

 

[WhiteCat27]

Hiya, I’m not sure what my levels were for my GAD but from doing a conversion of my c-peptide I think my level was 1.2 which I was told is low. Is the section on the right hand side of the page the range you should be in?

Oh I should've added that, yes the right side is the normal ranges! I'm just wondering since that was well over a year ago, if the results would've changed if I had it done again. I've seen on the forums that having a normal range can still be T1 or T2 since it's meant to show how much insulin is being produced right?

 

[SB.25]

That's not right. Could you get a second opinion? Have you been told this by an endocrinologist?

The person I spoke to is my consultant (he’s a consultant from Kings College in London) and he basically said that as my FBGs were not really getting any lower despite keep increasing the dose, he didn’t want me to continue upping it. Then he said something about it wouldn’t be sensible to go any higher than 16 due to my BMI?

In any event, I started the quick acting insulin yesterday and my numbers have been MUCH better today.

 

[SB.25]

Oh I should've added that, yes the right side is the normal ranges! I'm just wondering since that was well over a year ago, if the results would've changed if I had it done again. I've seen on the forums that having a normal range can still be T1 or T2 since it's meant to show how much insulin is being produced right?

Hey, yes the consultant said to me that it isn’t a 100% test anyway and it just gives them an indication of how much insulin you produce. I think in my case I’m on the lower end of the scale. I also wonder if my results would be different now to 2 months ago...

 

[WhiteCat27]

Hey, yes the consultant said to me that it isn’t a 100% test anyway and it just gives them an indication of how much insulin you produce. I think in my case I’m on the lower end of the scale. I also wonder if my results would be different now to 2 months ago...

Hmm it is something that should be considered, you definitely seem to be more on the LADA side in terms of your diabetes. I just...have no idea what's going on with mine haha.

 

[SB.25]

Hmm it is something that should be considered, you definitely seem to be more on the LADA side in terms of your diabetes. I just...have no idea what's going on with mine haha.

Oh gosh it’s all such a pain in the backside lol! A clear diagnosis would be great for both of us.

Today I started the quick acting insulin and I’ve been in single figures all day. Woohoo!

 

[WhiteCat27]

Oh gosh it’s all such a pain in the backside lol! A clear diagnosis would be great for both of us.

Today I started the quick acting insulin and I’ve been in single figures all day. Woohoo!

It really is lol and that's great! I hope it stays that way!