Can it be difficult to detect diabetes (Type 1.5)?

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Souvenir

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Hi, I'd be really grateful for some advice.

I've got classic diabetic symptoms -- increased thirst, increased hunger, increased urination, slow healing wounds, blurred vision, weight loss/inability to gain weight, etc.

My symptoms started slowly about 4 years ago, and have gotten worse and worse. In the last month or so, they've suddenly become really bad -- I'm hungry if I don't eat and hungry if I do (sometimes even hungrier if I do), I constantly have to pee (my bladder never feels empty), and I'm thirsty all the time.

The peeing at night is so bad, but I've found it's better the less I eat. So it's basically become a choice between eating and sleeping for me, which means I've spent the last 3 days hardly eating anything.

I went to my doctor yesterday, and she checked my blood with a finger prick test, said it was normal, but booked me in for a non-fasting blood test in 8 days. I also had a routine blood test about two weeks ago and it apparently came back normal, although I don't know what they checked for (at that time, the thought of diabetes hadn't crossed my mind, so I didn't discuss anything like that with them).

Except for age (I'm 31), I don't fit the pattern for diabetes type 2 at all, plus I was diagnosed with Fibromyalgia at 21, so I've got autoimmune stuff going on; so if I am diabetic, I think I'm more likely to have LADA/type 1.5 than type 2.

What I would like to know is, if I am diabetic, is it likely that I'd have had a diagnosis by now, or can it be difficult to detect? If I have got LADA/type 1.5 and my body is still producing some insulin, would that make it harder to diagnose?

I've been suffering with these symptoms for the last 4 years, and I just want to find a diagnosis. I'm getting really desperate. Am I barking up the wrong tree with my thoughts about diabetes?

I'd be so grateful for any help or advice anyone could give me. Thank you so much for reading.
 
Hopefully the test your doctor has done will be the HbA1C which is the average blood glucose over the previous 3 months and a level over 47mmmol/mol will give a diabetes diagnosis though it will not tell you if you are Type 2, Type 1 or Type 1.5 other tests would be needed for that those being C-peptide and GAD antibodies. Unfortunately doctors are reluctant to do those and they also take some time to do and get the results.
Certainly the symptoms you describe are consistent with diabetes and more likely Type 1 than Type 2 but could be other things as well so hopefully the tests you have had will be helpful.
Depending on when the finger prick test was done it might not have been particularly useful as it is not the test used for diagnosis of diabetes.
 
Hi @Souvenir An HbA1C blood test will give you an answer. If you’re not sure whether you’ve already had one done, do check.

LADA is just a form of Type 1. I have Type 1 and my symptoms were extreme thirst, peeing literally every 5 minutes, and a sudden weight loss. Your symptoms could be due to a number of things so I’d keep your mind open as to the cause.
 
Leadinglights said:
Hopefully the test your doctor has done will be the HbA1C which is the average blood glucose over the previous 3 months and a level over 47mmmol/mol will give a diabetes diagnosis though it will not tell you if you are Type 2, Type 1 or Type 1.5 other tests would be needed for that those being C-peptide and GAD antibodies. Unfortunately doctors are reluctant to do those and they also take some time to do and get the results.
Certainly the symptoms you describe are consistent with diabetes and more likely Type 1 than Type 2 but could be other things as well so hopefully the tests you have had will be helpful.
Depending on when the finger prick test was done it might not have been particularly useful as it is not the test used for diagnosis of diabetes.
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Thank you very, very much for your very helpful reply.
Inka said:
Hi @Souvenir An HbA1C blood test will give you an answer. If you’re not sure whether you’ve already had one done, do check.

LADA is just a form of Type 1. I have Type 1 and my symptoms were extreme thirst, peeing literally every 5 minutes, and a sudden weight loss. Your symptoms could be due to a number of things so I’d keep your mind open as to the cause.
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Thank you. The doctor was ultra busy when I saw her, so I didn't ask exactly what the routine blood test two weeks ago had covered, but had it been an HbA1C, I think she would have told me; I imagine the one she's booked me in for next week will be HbA1C.
I know LADA is a form of Type 1, but I thought it was more likely to be the LADA form in my case (that is, if I am diabetic) because of the slow onset I've experienced -- can Type 1 also have such a slow onset?
 
Type 1 tends to come on more slowly in adults than in children. The biggest symptom for me was the weight loss, I think. It was fast and shocking.
 
Thank you. I originally put my weight loss down to Fibromyalgia symptoms, but with everything else, I started to think it was maybe diabetes instead.
 
Souvenir said:
Thank you. I originally put my weight loss down to Fibromyalgia symptoms, but with everything else, I started to think it was maybe diabetes instead.
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What I noticed was the speed of the loss, the fact I was eating loads but still losing weight, and the fact I lost weight in unexpected places and it was a very different weight loss than the normal ups and downs of weight. My whole face changed.
 
Inka said:
My whole face changed.
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Same. I've had trouble with my stomach ever since I had Fibromyalgia, and when it all first happened 4 years ago, I'd just had a campylobacter infection so I thought it was because of that. My Mum was like, "I never knew your jaw was so sharp!" :rofl:
I weighed myself on and off, and I think it kind of plateaued out at about 6 and a half stone; but recently, all my clothes have become even looser, so I know I've lost weight in the last few weeks (I don't have a scale at the moment).
 
As others have said, LADA is just a slower onset Type 1. There is no specific time scale that makes you Type 1 or LADA so it is very much open to interpretation but a Type 1 will usually need insulin within a few weeks of diagnosis if they aren't DKA at diagnosis whereas LADA might go several months or years. The testing for Type 1 and LADA is the same but it can be more difficult to interpret the results for LADA, often because the insulin production wanes gradually so until it gets to the critical tipping point where the remaining beta cells are no longer able to cope, it can appear that there is enough insulin production albeit at the lower end of the normal scale. Similarly the antibodies can fade over time so a GAD antibody test might come back quite low. You really need an experienced consultant to authorize these tests and interpret the results alongside clinical factors like your weight and lifestyle and family history and other autoimmune conditions. Most GP's haven't got a clue about the various types of diabetes or the tests involved and some even believe that if you are a mature adult then it must be Type 2 because Type 1 only exhibits in children. And they usually haven't heard of LADA or MODY or Type 3c diabetes.

The first step though is an HbA1c blood test so hopefully that is what has been requested for your appointment in 8 days time. HbA1c is not a fasting test so that ties in and results should come back pretty quickly for that (usually just a few days). C-peptide and GAD take about 6 weeks to come back and really you want those requested by a consultant not your GP. The C-pep test can be urine or blood but the urine test is easier and cheaper to perform but less reliable. The blood test is logistically difficult because the sample has to be frozen within 20mins and sent off to the lab in that state and most GP practices don't have the facilities to do that. Getting an initial diabetes diagnosis from an HbA1c and getting started on some treatment if it indicates diabetes is the first step. If it is diabetes, I would expect your result to be very high with the symptoms you describe, which makes it a little surprising that your finger prick was normal. The body doesn't start removing excess glucose via the kidneys (and trigger that unquenchable thirst and constant weeing) until BG levels are persistently mid teens or above.

It is interesting that you mention having a campylobacter infection before the symptoms developed because Type 1 diabetes is often believed to be triggered by an infection/virus .

Anyway, good luck with your blood test next week and do let us know how you get on. If you start to feel really unwell with abdominal pain or breathing difficulties or your breath starts to smell like pear drops, get yourself to hospital pronto as that is likely DKA (Diabetic KetoAcidosis) which is essentially your blood becoming acidic and toxic due to the high level of glucose and no insulin to deal with it and ketones start to develop. It can lead to coma, organ damage and death in extreme cases although that is extremely rare..... but important not to be complacent and know what to look out for.
 
Yes, type 1.5 LADA can have that slow an onset, for some people it's even slower, so it is definitely possible - if your HbA1c puts you in the diabetic range than I would ask for a GAD antibody test and ideally a C-Peptide test too - though they may not be willing to do the latter unless the antibody one comes back positive. I have never had the C-Peptide one done - my GAD antibody one was so high no-one had any doubts about my having type 1!

I have ME and my type 1 is secondary to that so a similar thing with auto-immune issues (though my type 1 started startlingly fast, out of the blue I lost a stone in weight in a fortnight and was whisked off to hospital with DKA).

Counter-intuitively, drinking plenty of water is likely to help reduce the peeing at night (assuming that you do indeed have diabetes), as it will flush some of the glucose out of your body (you are likely to pee more volume but less frequently). And do try to eat some low-carb things like protein and leafy vegetables, as if you don't eat your body is likely to think you need it to release some of its stored glucose into your bloodstream.

As @rebrascora says, do watch out for DKA. In fact, as you have been losing weight so fast and struggling with consant hunger recently, it would be sensible for you to get a pot of Ketostix from the pharmacy asap to make sure you don't have ketones in your urine - they are quite cheap and easy to use (you just pee on a stick and follow the instructions on the pot) - if you have anything other than trace amounts it's DKA and then you need to get to A&E straight away, don't wait to see the GP or get the HbA1c done, just go to the hospital and tell them you have ketones and think you have type 1 diabetes.
 
rebrascora said:
As others have said, LADA is just a slower onset Type 1. There is no specific time scale that makes you Type 1 or LADA so it is very much open to interpretation but a Type 1 will usually need insulin within a few weeks of diagnosis if they aren't DKA at diagnosis whereas LADA might go several months or years. The testing for Type 1 and LADA is the same but it can be more difficult to interpret the results for LADA, often because the insulin production wanes gradually so until it gets to the critical tipping point where the remaining beta cells are no longer able to cope, it can appear that there is enough insulin production albeit at the lower end of the normal scale. Similarly the antibodies can fade over time so a GAD antibody test might come back quite low. You really need an experienced consultant to authorize these tests and interpret the results alongside clinical factors like your weight and lifestyle and family history and other autoimmune conditions. Most GP's haven't got a clue about the various types of diabetes or the tests involved and some even believe that if you are a mature adult then it must be Type 2 because Type 1 only exhibits in children. And they usually haven't heard of LADA or MODY or Type 3c diabetes.

The first step though is an HbA1c blood test so hopefully that is what has been requested for your appointment in 8 days time. HbA1c is not a fasting test so that ties in and results should come back pretty quickly for that (usually just a few days). C-peptide and GAD take about 6 weeks to come back and really you want those requested by a consultant not your GP. The C-pep test can be urine or blood but the urine test is easier and cheaper to perform but less reliable. The blood test is logistically difficult because the sample has to be frozen within 20mins and sent off to the lab in that state and most GP practices don't have the facilities to do that. Getting an initial diabetes diagnosis from an HbA1c and getting started on some treatment if it indicates diabetes is the first step. If it is diabetes, I would expect your result to be very high with the symptoms you describe, which makes it a little surprising that your finger prick was normal. The body doesn't start removing excess glucose via the kidneys (and trigger that unquenchable thirst and constant weeing) until BG levels are persistently mid teens or above.

It is interesting that you mention having a campylobacter infection before the symptoms developed because Type 1 diabetes is often believed to be triggered by an infection/virus .

Anyway, good luck with your blood test next week and do let us know how you get on. If you start to feel really unwell with abdominal pain or breathing difficulties or your breath starts to smell like pear drops, get yourself to hospital pronto as that is likely DKA (Diabetic KetoAcidosis) which is essentially your blood becoming acidic and toxic due to the high level of glucose and no insulin to deal with it and ketones start to develop. It can lead to coma, organ damage and death in extreme cases although that is extremely rare..... but important not to be complacent and know what to look out for.
Click to expand...
Wow, thank you so much for such an incredibly informative answer.
The finger prick being normal was what caused me doubt, too -- I'd basically fasted (ate 1 mini can of tuna day and nothing else) for 3 days beforehand so that I could sleep without getting up every hour or so, and the difference in needing to wee was immense (I only had to get up once or twice), so I thought maybe that had something to do with it, but I was surprised it could make that much difference that quickly when I'd only been doing it for 3 days.
 
TheClockworkDodo said:
Yes, type 1.5 LADA can have that slow an onset, for some people it's even slower, so it is definitely possible - if your HbA1c puts you in the diabetic range than I would ask for a GAD antibody test and ideally a C-Peptide test too - though they may not be willing to do the latter unless the antibody one comes back positive. I have never had the C-Peptide one done - my GAD antibody one was so high no-one had any doubts about my having type 1!

I have ME and my type 1 is secondary to that so a similar thing with auto-immune issues (though my type 1 started startlingly fast, out of the blue I lost a stone in weight in a fortnight and was whisked off to hospital with DKA).

Counter-intuitively, drinking plenty of water is likely to help reduce the peeing at night (assuming that you do indeed have diabetes), as it will flush some of the glucose out of your body (you are likely to pee more volume but less frequently). And do try to eat some low-carb things like protein and leafy vegetables, as if you don't eat your body is likely to think you need it to release some of its stored glucose into your bloodstream.

As @rebrascora says, do watch out for DKA. In fact, as you have been losing weight so fast and struggling with consant hunger recently, it would be sensible for you to get a pot of Ketostix from the pharmacy asap to make sure you don't have ketones in your urine - they are quite cheap and easy to use (you just pee on a stick and follow the instructions on the pot) - if you have anything other than trace amounts it's DKA and then you need to get to A&E straight away, don't wait to see the GP or get the HbA1c done, just go to the hospital and tell them you have ketones and think you have type 1 diabetes.
Click to expand...
Thank you SO much for telling me about drinking plenty of water -- I've been doing the absolute opposite!!
 
Souvenir said:
Wow, thank you so much for such an incredibly informative answer.
The finger prick being normal was what caused me doubt, too -- I'd basically fasted (ate 1 mini can of tuna day and nothing else) for 3 days beforehand so that I could sleep without getting up every hour or so, and the difference in needing to wee was immense (I only had to get up once or twice), so I thought maybe that had something to do with it, but I was surprised it could make that much difference that quickly when I'd only been doing it for 3 days.
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Ah! It’s never a good idea to fast unless you’re told to. I don’t know whether you have diabetes or not, but in someone with the early stages of Type 1, it’s possible to have a normal test in such circumstances. When Type 1 comes on more slowly, it’s often missed or assumed to be Type 2. I recommend you eat normally because if you don't, you can mask the signs of LADA. I’ve seen it happen a number of times. Delaying the correct diagnosis is obviously unwise, but in the case of LADA, as early introduction of insulin can help preserve the remaining beta cells in the pancreas, then it’s not good.

The HbA1C gives an idea of your blood sugar over the preceding 3 months, so if you’ve been eating a restricted diet for a while, suddenly changing it won’t have very much effect at all on this HbA1C but you could also ask for a blood glucose (they can do the equivalent of a finger-prick on a blood sample from your arm as well as the HbA1C). In addition, if your HbA1C is borderline, they might repeat it in a few weeks. If you change your diet now, then that will mean any second HbA1C is more indicative of the true situation.

I second the advice to buy some Ketostix too.
 
Inka said:
Ah! It’s never a good idea to fast unless you’re told to. I don’t know whether you have diabetes or not, but in someone with the early stages of Type 1, it’s possible to have a normal test in such circumstances. When Type 1 comes on more slowly, it’s often missed or assumed to be Type 2. I recommend you eat normally because if you don't, you can mask the signs of LADA. I’ve seen it happen a number of times. Delaying the correct diagnosis is obviously unwise, but in the case of LADA, as early introduction of insulin can help preserve the remaining beta cells in the pancreas, then it’s not good.

The HbA1C gives an idea of your blood sugar over the preceding 3 months, so if you’ve been eating a restricted diet for a while, suddenly changing it won’t have very much effect at all on this HbA1C but you could also ask for a blood glucose (they can do the equivalent of a finger-prick on a blood sample from your arm as well as the HbA1C). In addition, if your HbA1C is borderline, they might repeat it in a few weeks. If you change your diet now, then that will mean any second HbA1C is more indicative of the true situation.

I second the advice to buy some Ketostix too.
Click to expand...
Yes, I agree, it never is a good idea -- but the peeing at night was so bad I was at my wits end! But yesterday I tried as @TheClockworkDodo suggested and didn't limit my water intake at all, and that helped a lot! Thank you everyone for all the help, I appreciate it so much.
 
Let us know how your results and discussions with your Dr play out @Souvenir

Hope you get some clarity over what,s behind your symptoms - and some much needed reflief - very soon!
 
Yes, you need the results of the Hba1c. My finger prick tests are always normal from around 10:30am up until I eat my evening meal but it was the Hba1c that diagnosed me as diabetic it came back very high. With type 1.5 the onset is much slower and you continue to make insulin. I find drink as much during the day as you can and end the water intake with you evening meal and that should sort the problem during the night. Also, try not to fast as much its not good for your weight loss nor you mental health. Let us know when you get your results.
 
I had the test last Friday and finally got the results this afternoon. Apparently they came back normal, so I've asked for a copy of the results, which should hopefully be available tomorrow.
 
Good news @Souvenir 🙂 Sensible to get the number. I always like my results in the actual figures too.
 
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