Type 1 or 2 - still not sure/consultant doesn’t believe in LADA

Status
Not open for further replies.
A

adamcymru

New Member
Relationship to Diabetes
Type 1
Pronouns
He/Him
Hi everyone,

Have been reading posts on the forum for a while and have found everyone’s posts, comments and sharing of experiences invaluable - thank you!

Was first diagnosed with Type 2 in 2018 through my GP, managed by the Practice Nurse and started on Merformin and Gliclazide, then Empagliflozin and Ozempic after a couple of years. My HbA1C varied quite a lot, never perfect, but never awful. Tried a fasting diet at the beginning of 2023, kept taking Ozempic but stopped all the other meds and my HbA1C was 51 after 6 months. Started feeling unwell over Christmas 2023 (thirsty, peeing more, woolly headed), did a BM and my level was 25 so went straight back to the GP. A new Practice Nurse started me back on metformin and Gliclazide, repeated my bloods including autoantibody tests as I’d never had them done before. Bought myself a Dexcom sensor to keep track of my BM’s whilst waiting for the results for the next few weeks too which seemed all over the place (usually in the teens but sometimes >23). Had another review last Friday and got told by my nurse the results were back, HbA1C was 98 and the autoantibody test came back as positive so I was likely to be a Type 1. I didn’t have any ketones, so got told to wait for a call on Monday morning from the hospital to be seen by the consultant. Did some reading over the weekend and was expecting to be told on Monday that I had LADA and started on insulin.

Saw the consultant and specialist nurse at the hospital on Monday and left a little confused if I’m honest….

Consultant was great, but explained they didn’t believe in LADA - people were Type 1 as it was autoimmune driven or Type 2, insulin resistance. My GAD autoantibodies were 190, but no other autoantibodies detected. They suggested doing a C-peptide test and then reviewing me again to decide whether to treat me as a Type 1 or a Type 2. I guess I’m confused by the ‘black or white’/type 1 or type 2 view, despite having GAD autoantibodies they still may end up treating me as if I’m type 2 and discharge me back to my GP. They started me on 8iu Lantus daily and 2iu Trurapi before each meal in the meantime. Blood sugars are still spiking into the mid teens following meals, but going to start upping my rapid dose by a unit and see what difference it makes. Have ordered myself another months supply of Dexcom sensors to keep a closer eye on what’s going on too.

I’m guessing I might be left with the ambiguity until the C-peptide test comes back, but don’t know how the result will influence whether I get a type 1 or 2 diagnosis?

Apologies for the long rambling post! Just wondered if anyone else has had a similar experience or any insights to share?
 
Welcome @adamcymru, I'm afraid I can't help in any way about sharing your experience. My arrival into D was abrupt and clear cut (pun intended).

There are others in this Forum who have much more knowledge about this though and I'm sure they'll be along in the morning to offer their thoughts and experience. Meanwhile Welcome again and I'm sure you will get some moral support and observations about your dilemma and current confusion from members here.
 
adamcymru said:
Hi everyone,

Have been reading posts on the forum for a while and have found everyone’s posts, comments and sharing of experiences invaluable - thank you!

Was first diagnosed with Type 2 in 2018 through my GP, managed by the Practice Nurse and started on Merformin and Gliclazide, then Empagliflozin and Ozempic after a couple of years. My HbA1C varied quite a lot, never perfect, but never awful. Tried a fasting diet at the beginning of 2023, kept taking Ozempic but stopped all the other meds and my HbA1C was 51 after 6 months. Started feeling unwell over Christmas 2023 (thirsty, peeing more, woolly headed), did a BM and my level was 25 so went straight back to the GP. A new Practice Nurse started me back on metformin and Gliclazide, repeated my bloods including autoantibody tests as I’d never had them done before. Bought myself a Dexcom sensor to keep track of my BM’s whilst waiting for the results for the next few weeks too which seemed all over the place (usually in the teens but sometimes >23). Had another review last Friday and got told by my nurse the results were back, HbA1C was 98 and the autoantibody test came back as positive so I was likely to be a Type 1. I didn’t have any ketones, so got told to wait for a call on Monday morning from the hospital to be seen by the consultant. Did some reading over the weekend and was expecting to be told on Monday that I had LADA and started on insulin.

Saw the consultant and specialist nurse at the hospital on Monday and left a little confused if I’m honest….

Consultant was great, but explained they didn’t believe in LADA - people were Type 1 as it was autoimmune driven or Type 2, insulin resistance. My GAD autoantibodies were 190, but no other autoantibodies detected. They suggested doing a C-peptide test and then reviewing me again to decide whether to treat me as a Type 1 or a Type 2. I guess I’m confused by the ‘black or white’/type 1 or type 2 view, despite having GAD autoantibodies they still may end up treating me as if I’m type 2 and discharge me back to my GP. They started me on 8iu Lantus daily and 2iu Trurapi before each meal in the meantime. Blood sugars are still spiking into the mid teens following meals, but going to start upping my rapid dose by a unit and see what difference it makes. Have ordered myself another months supply of Dexcom sensors to keep a closer eye on what’s going on too.

I’m guessing I might be left with the ambiguity until the C-peptide test comes back, but don’t know how the result will influence whether I get a type 1 or 2 diagnosis?

Apologies for the long rambling post! Just wondered if anyone else has had a similar experience or any insights to share?
Click to expand...
 
inmy opinion they should be treating you for type 1 diabets and put you on insulin straight away, if your hba1c is 98 that very high and even though you dont have ketones, this can cause you to get them and then go into ketonacidosis which is not a very nice thing to experience, as i have had it loads of times, they are actually putting your life in danger i believe, if your hemogloben is that high means theres not enough insulin working your body and this is putting strain on your kidneys heart and liver......are you suffering symptoms of high bloods, drinking alot scratching crabbit tired, this is what happens cause hospitals dont want to make mistakes and wrongly put you on insulin i cant understand it though if there that high, you should be put on insulin if your ablets are not working, there is no ifs or buts about it you will go on insulin, so get a 2nd opinion, i dont really understand type2 cause i have always been type 1 fpr 43 years now
 
Welcome, @adamcymru . When I was diagnosed, my GP assumed I was Type 2 because of my age. Hospital eventually thought differently, but it did take a while to get a correct diagnosis. My hospital at the time also didn’t like the term LADA on the grounds that you were either autoimmune, and Type 1, or you weren’t, and it was the treatment that was important not the terminology. (LADA is sometimes used for Type 1 in older people where it comes on more slowly, but it’s still basically autoimmune.)
It sounds like they are expecting you to turn out as Type 1, if they’ve started you on a basal bolus insulin regime, but want a fuller picture before giving a definitive diagnosis. There are cases of false positives with the GAD test, and people have been categorised as Type 1 and turned out to be Type 2. I was started on conservative doses of insulin, they don’t like to lower BG too quickly because it can cause temporary eye problems and neuropathy pain if lowered too quickly, and then left to titrate upwards gradually.
It’s frustrating for you now, but I’d have thought that now the NICE guidelines on prescribing CGMs have been relaxed so that anyone on more than one dose of insulin can have one prescribed, your GP should be able to give you a prescription and you shouldn’t have to fund your own.So ask about that before you shell out more money.
 
Hi Adam,
I think Robin’s post is very pertinent.
Drs by their training rely on a diagnostic approach so rule out different causes and then they can suggest a relevant treatment.
Hence they often look at diabetes as an insulin resistance or deficiency issue so simply classify it as Type 2 or Type 1.
They also tend to think Type 1 is from a very young age and Type 2 is a lifestyle much older Type of diagnosis.
Hence your Type 2 initial diagnosis but you imo are more likely Type 1 LADA.
The important reason why you need this clarifying but you may have got there anyway is the different approaches to medication.
So if you have an insulin deficiency that means your beta cells are producing little or no insulin so you need exogenous insulin whereas if you have a resistance issue there are a range of non insulin medications as well as ultimately insulin to try and manage your condition.
So if you find you need insulin to better control your BG then to me that is the best way and in fact only way forward for you.
 
Robin said:
I’d have thought that now the NICE guidelines on prescribing CGMs have been relaxed so that anyone on more than one dose of insulin can have one prescribed, your GP should be able to give you a prescription and you shouldn’t have to fund your own.So ask about that before you shell out more money.
Click to expand...
If you’re down as type 2 on the system your aren’t automatically entitled you have to meet other criteria such as testing 8+ times a day, but if they decide you’re type 1 you’d be automatically eligible. So if asking for libre when the system says type 2 make sure you’ve got your reason ready in case challenged.

I’m also not a straightforward type but as the computer says t2 that’s the rules they go by, even though I have antibodies and low insulin production.
 
I am in a similar position somehwat, positive Gad, low c peptide but classed as a type 2 because I was still producing insulin. That was 2 months ago in december and I was on metformin and glicazide was added but my numbers were staying high. My bgs went out of control 20s and 30s and I ended up in a&e and got started on a basal and bolus insulin regime. My A1C also went up from 7 in December to 9.9 in feb within those two months. Now I have an appointment with the diabetic clinic doctor on monday and they will tell me what they are classing me as now. At this point, I do not care too much because the insulin has been so helpful and it is so rewarding to see my numbers come down. The only thing I would like is a prescription for a glucose monitor because hypos are quite scary and for some reason, my symptoms are not always drastic. I walked to the bus from a meeting the other day and thought to check because I felt hungry and found 2.6. I have had a couple of numbers in the 2s even though I try to count carbs well, in the night especially. I hope that the doctor will be compelled enough to diagnose me a cgm even though my file does not say type 1 right now.
 
Mbabazi said:
classed as a type 2 because I was still producing insulin
Click to expand...
This seems somewhat naive from your doctor. Tests have been done with people diagnosed with Type 1 10+ years ago and they are still producing some, albeit a small amount of, insulin.
It is not a switch that is on or off. More like a tap that is closed off very very slowly. My insulin needs slowly raises for 8 years after my diagnosis. As nothing else changed, it is reasonable to assume this was my honeymoon period where my beta cells were slowly dying off
 
Hi @adamcymru My consultant rarely uses the term LADA either. The important thing is that your blood sugar is controlled, so focus on that first and your type second. My consultant also told me that she looks for two Type 1 antibodies rather than just one for a pretty definite Type 1 diagnosis. Your C Peptide result will help the diagnosis. Occasionally, the type lines are blurry so then the consultant uses their clinical experience to determine your type. They do this by looking at your antibodies, your C Peptide, your weight, your family history, ketones, your symptoms at diagnosis, etc.
 
Hi @adamcymru , its only 18 months since I was diagnosed so it as knowledgeable as some contributors but my Hba1c was in the 90s, no antibodies detected and no cpeptide test done but straight on the a bolus/basal regime as the conclusion was its "obviously"type 1. My symptoms were very similar to yours and have seen a private consultant as I was confused by the whole thing. He believed LADA IS a thing and as previously said in this thread is just type 1 arriving with us more slowly at an older age. Hope you get your diagnosis sorted soon but seems obvious to all us amateurs. When they decide it's type 1 whether labelled as LADA or not you'll get your free libre sensors and push for a carb counting course I was told it was too early at a few months in but I found it incredibly useful even having read everything under the sun Good luck
 
Wonky said:
Hi @adamcymru , its only 18 months since I was diagnosed so it as knowledgeable as some contributors but my Hba1c was in the 90s, no antibodies detected and no cpeptide test done but straight on the a bolus/basal regime as the conclusion was its "obviously"type 1. My symptoms were very similar to yours and have seen a private consultant as I was confused by the whole thing. He believed LADA IS a thing and as previously said in this thread is just type 1 arriving with us more slowly at an older age. Hope you get your diagnosis sorted soon but seems obvious to all us amateurs. When they decide it's type 1 whether labelled as LADA or not you'll get your free libre sensors and push for a carb counting course I was told it was too early at a few months in but I found it incredibly useful even having read everything under the sun Good luck
Click to expand...
Interesting that there is no common agreement on LADA. Curious how they decided it was type one without antibodies and no c peptide test. What did they use to make that conclusion?
 
Mbabazi said:
Interesting that there is no common agreement on LADA. Curious how they decided it was type one without antibodies and no c peptide test. What did they use to make that conclusion?
Click to expand...
I was advised I had no risk factors for type 2 and my bg was 18.8 post fasting, Hba1c 98 and had small amount of ketones ! Asked for a cpeptide test but was told it wouldn't be of value. Every approach from the medical profession seems so different.
 
Mbabazi said:
Interesting that there is no common agreement on LADA. Curious how they decided it was type one without antibodies and no c peptide test. What did they use to make that conclusion?
Click to expand...
I was diagnosed with Type 1 as an adult twenty years ago before these tests were common. I guess, as @Inka said, it was based on family history and general symptoms.
Not that it seemed that scientific at the time when the doctor said, “you’re too slim to have type 2 so it must be Type 1”.
I have never have tests to prove or disprove this but I remain pretty sensitive to insulin so unlikely to have insulin resistance, continue to be slim and active and there is no history of any type of diabetes in my family. (Actually, when I asked my Mum she told me there is a family history of type 1 - a great aunt through marriage which I don’t think counts.) So, I think they got it right.
The term LADA was as common as the c-peptide test at the time and, today, it seems to have a lose definition which I suspect is why some doctors don’t bother with the term, especially as it has little impact on the treatment.
I have also seen it referred to as Type 1.5 but that seems even more ambiguous - some doctors consider it to be Type 1 diagnosed as an adult whereas other consider it to be Tyoe 1 with insulin resistance.
I agree with others - the name is far less relevant than the treatment.
 
This is the thing @helli My consultant says LADA and Type 1.5 are different yet often used interchangeably. I once pressed her on LADA and exactly what it meant and she said it’s not a term she’d ever use except, if pushed, might use it for adults diagnosed over 55. Whereas Type 1.5 is kind of between Type 1 and 2 and has some insulin resistance.
 
Welcome to forum @adamcymru

Hope you get some clarity over your classification soon. I find it bewildering how many Drs seem to want to put someone down as T2, even where there are clear factors in the clinical presentation that indicate T1.

For me the tricky thing is the blurriness of the lines in the lived experience of diabetes vs the sometimes over-precise nature of evidence-based medicine and research (and by extension NICE guidance and health economics) which divides people into boxes based on very ‘classic of the type’ lines. So option ‘x’ might not be deemed appropriate because people are the “wrong type”, even though it would fit the needs of the individual very precisely.
 
Status
Not open for further replies.
Back
Top