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

[Souvenir]

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.

 

[Hertfordshiremum]

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.

Hello

Sorry to hear you have all these symptom, and I know ‘the not knowing’ is very worrying. I would ask for a print out of your recent blood test results and see what they tested. To establish if you are diabetic you need a HbA1c test as part of your blood test. Once you have that and IF it is in the diabetic range then you can test for the type. It may be as you have told the doctor today that they have included this in your blood test in 8 days time. When you email or phone for the last blood test results just ask what is included in the next one. If you are in England they should do this without question. I also have multiple autoimmune diseases, I hope you sort it out.

 

[Lamont D]

And to add to that if your blood glucose and hba1c levels are in non diabetic levels, if there is nothing showing up in the blood panel result. Then ask for a referral to a specialist. There are more endocrine, metabolic disorders than the types of diabetes you have quoted.
I know what you are going through. I was misdiagnosed with T2 for years. I had all the symptoms but my hba1c and fasting levels were normal.
Only a specialist can authorise the tests required for a true diagnosis.

Best wishes

 

[EllisB]

HbA1c is a measure of your average blood glucose over the 12 weeks prior to the sample being taken. That is a better measure than the instantaneous fi ger prick.

If it is below 48 mmol/mol you are highly unlikely to be diabetic.

There is another test, used less often nowadays. It is called a glucose tolerance test. You have blood taken, drink a fixed amount of glucose, sit quietly for 2 hours and a second sample is taken. If that second sample is above 7 mmol/l you are diabetic.

These both identify diabetes, not the type. There are further tests that can identify if your pancreas is producing insulin in sufficient amounts and an sntibody test to detect an autoimmune response. These are usually only done if type 1 is suspected. Initially, they may try medications to get your blood glucose in the normal range.

If your results are 'normal' your doctor will need to consider other causes. That really is outside the experience of most members of this site.

Ideally, they will already be trying to exclude other potential causes of your weight loss.

I hope you get to the bottom of it quickly.

Good luck

Ellis

 

[Souvenir]

Hello

Sorry to hear you have all these symptom, and I know ‘the not knowing’ is very worrying. I would ask for a print out of your recent blood test results and see what they tested. To establish if you are diabetic you need a HbA1c test as part of your blood test. Once you have that and IF it is in the diabetic range then you can test for the type. It may be as you have told the doctor today that they have included this in your blood test in 8 days time. When you email or phone for the last blood test results just ask what is included in the next one. If you are in England they should do this without question. I also have multiple autoimmune diseases, I hope you sort it out.

And to add to that if your blood glucose and hba1c levels are in non diabetic levels, if there is nothing showing up in the blood panel result. Then ask for a referral to a specialist. There are more endocrine, metabolic disorders than the types of diabetes you have quoted.
I know what you are going through. I was misdiagnosed with T2 for years. I had all the symptoms but my hba1c and fasting levels were normal.
Only a specialist can authorise the tests required for a true diagnosis.

Best wishes

Thank you both so much, these are both really helpful responses with some great advice.

 

[Souvenir]

HbA1c is a measure of your average blood glucose over the 12 weeks prior to the sample being taken. That is a better measure than the instantaneous fi ger prick.

If it is below 48 mmol/mol you are highly unlikely to be diabetic.

There is another test, used less often nowadays. It is called a glucose tolerance test. You have blood taken, drink a fixed amount of glucose, sit quietly for 2 hours and a second sample is taken. If that second sample is above 7 mmol/l you are diabetic.

These both identify diabetes, not the type. There are further tests that can identify if your pancreas is producing insulin in sufficient amounts and an sntibody test to detect an autoimmune response. These are usually only done if type 1 is suspected. Initially, they may try medications to get your blood glucose in the normal range.

If your results are 'normal' your doctor will need to consider other causes. That really is outside the experience of most members of this site.

Ideally, they will already be trying to exclude other potential causes of your weight loss.

I hope you get to the bottom of it quickly.

Good luck

Ellis

Thank you very much for the information, it's very helpful to know.

 

[Lamont D]

Hi @Souvenir
A glucose tolerance test is not the diagnostic means of true diagnosis for diabetes. The hba1c test is usually referred to as the benchmark.
An OGTT is used sparingly now, unless something specific is to be tested.
the two hours OGTT is not as conclusive because of the lack of insulin testing, and a c-peptide or GAD is often missing. So it misses the insulin sensitivity and glucose intolerance for other conditions that do not become apparent within the two hours.
An extended OGTT over a few more hours can highlight so much more and discover other issues that do show hormonal imbalance. And added together with other diagnostic tests such as I mentioned before.
It also had the benefit of finger prick tests every 15 or 30 minutes. To record spike and progress of blood glucose levels.

There are a lot more conditions than just diabetes. I know, I have one. And have taken part in trials that necessary extended oral glucose tolerance test was the primary diagnostic tool.
And because my condition is rare, I have had to do the research and the science behind it. And why it happened.
Without my endo, he encouraged my understanding of what was happening and treatment.

Best wishes.

 

[Souvenir]

There are a lot more conditions than just diabetes.

Thank you. Unfortunately, I haven't been able to get any answers from any GPs I've seen, and I've found trying to get a referral to anyone or anything basically impossible. I even went to my doctor once in late 2018 and told her that my combined symptoms were so bad, I was suicidal, and asked if I could at least be referred to a counsellor. When I phoned a few months later to ask where I was in the waiting list, she told me she had no memory of that conversation at all, and still didn't refer me to a counsellor.
I recently changed to a new surgery after moving, but was told that they would have to 'get to know me first' before they could consider any referrals of any kind, even occupational therapy to help with my Fibromyalgia symptoms. I can't afford to go privately, so the hope of being able to see a specialist in anything who might help me to get some answers seems pretty low.

I have so much respect and pride in our health service, but I think the problem is, I've lived in Wales for the last 5 years, and my Mum's cousin (a retired Welsh doctor) said that the health service in Wales was 'past breaking point', and they just really, really, really don't have the resources.

 

[Lamont D]

Wales is far from the worst NHS area
In my area my surgery has no GP's. The contract for the services ends in November.
The new contract is up for grabs
I have a rare condition and I have no idea who I'm being seen by even if I do get an appointment!
They are all locums, who won't know my health history. Probably, as in my experience of locum and GP's in general haven't got a clue about my condition.
Am hoping the dsn stays as she has been doing my annual health checks.
My daughter works on the front line and the hospital is really struggling due to lack of decent infrastructure and the swathing cuts not only in resources but staff and underhand privatisation. Sourcing out.
A system of care that is broken and cannot adapt to better methods within the health system.
My daughter in law has worked in a care home for nearly ten years. It is an absolute disgrace what has happened in the last twelve years to this sector.
And it is intentional political dogma that has wrecked out beloved NHS.

 

[Souvenir]

Wales is far from the worst NHS area
In my area my surgery has no GP's. The contract for the services ends in November.
The new contract is up for grabs
I have a rare condition and I have no idea who I'm being seen by even if I do get an appointment!
They are all locums, who won't know my health history. Probably, as in my experience of locum and GP's in general haven't got a clue about my condition.
Am hoping the dsn stays as she has been doing my annual health checks.
My daughter works on the front line and the hospital is really struggling due to lack of decent infrastructure and the swathing cuts not only in resources but staff and underhand privatisation. Sourcing out.
A system of care that is broken and cannot adapt to better methods within the health system.
My daughter in law has worked in a care home for nearly ten years. It is an absolute disgrace what has happened in the last twelve years to this sector.
And it is intentional political dogma that has wrecked out beloved NHS.

By no means is Wales the worst, but it is certainly a long fall from my previous practice in Yorkshire (which was far from the world's best as it was), and certainly not what I expected from the capital city.
But in the interests of full disclosure, I should mention something I had forgotten: my practice in Cardiff did, actually, once refer me to a gastric specialist -- only he took the opportunity to repeatedly brush his arm along my nipples while he examined my abdomen!

I do hope you can get some help if you do get an appointment -- best of luck.

 

[Lamont D]

By no means is Wales the worst, but it is certainly a long fall from my previous practice in Yorkshire (which was far from the world's best as it was), and certainly not what I expected from the capital city.
But in the interests of full disclosure, I should mention something I had forgotten: my practice in Cardiff did, actually, once refer me to a gastric specialist -- only he took the opportunity to repeatedly brush his arm along my nipples while he examined my abdomen!

I do hope you can get some help if you do get an appointment -- best of luck.

When going through the process from misdiagnosis to referral, to tests and finally diagnosis and up until a month ago, I was treated brilliantly by my surgery and my specialist. Even with the misdiagnosed T2, they obviously didn't have a clue. During the hardest time of my life, my GP was brilliant and got me referred to a neurologist and counselling, numerous hhospital appointments and a stay in hospital over a holiday period.My care was brilliant. And this was through the peak of covid.
there is nothing wrong with the NHS that keeping political ideology out of that would improve it immediately.
Let the people who know about running health service actually run it!

Don't stop fighting for better health. care

 

[Marie 2]

@Souvenir Classic symptoms of type 1/LADA is weight loss. A type 1 lacks insulin or enough insulin to properly metabolize the food you eat. So you will be starving and usually eat more, blood sugars go up but you lose weight because you are peeing out the energy from the food you do eat. If you don't eat, then you might still be making some insulin to keep a finger test in normal ranges. Thirst is your bodies way to try to cope with getting rid of glucose that can't be used. 50% of type 1's get it after the age of 30 and 35% of of type 1's are misdiagnosed as a type 2 at first. LADA and type 1 are the same thing, LADA is just the description added and used when you get type 1 when you are older.

The problem is LADA/Type 1 it is a slow process. You lose the ability to make insulin over time until you stop altogether or hit the point to make enough. Diet and lifestyle works at first because it can take 8 years plus to completely lose the ability to make insulin.

Two tests are critical to know if it's type 1. An antibody test, which a lot of countries just do a GAD test, (but there are others too,) which if positive is a sign you are a type 1. But there are some type 1's that test negative and don't make insulin and they don't know why. Then a C-Peptide test which tests your actual insulin production. If low or low normal it's a sign of being a type 1, as you lack the ability to make insulin or enough insulin. High or high normal is a sign of being a type 2 because you make extra insulin because you are insulin resistant and your body makes more to make up for it.

It's important to know, unfortunately a lot of type 1's find out by going into DKA. DKA is not from high blood sugar, it's from a lack of enough insulin. You want to keep track of the symptoms of DKA and if they fit get immediately to emergency. You get sick pretty fast.

I was misdiagnosed for over 8 years. I was put on insulin after a few years because medications kept making me sick, which is probably what saved me from ever getting critical. But also probably what helped for me to be misdiagnosed for so long. If you weren't eating and you are still making some insulin, your blood test could show up in "normal" ranges. A1c doesn't always go out of "normal" ranges for years, since you still make some insulin that works. My first couple of years my A1c was completely in normal ranges and by the third year it had crept up to only be in the prediabetic range. Nothing the doctors thought was abnormal.

I'm not saying you are a type 1. I have no idea. But it is something you might press your doctor about investigating if it makes sense to you. Also be aware to watch for DKA.

Diabetic Ketoacidosis (DKA) – Warning Signs, Causes & Prevention

Stay informed on warning signs & symptoms of DKA. Discover our range of diabetes products to manage ketones and avoid diabetic coma.

diabetes.org

• C-Peptide
  While most tests check for antibodies, this test measures how much C-peptide is in a person’s blood. Peptide levels typically mirror insulin levels in the body. Low levels of C-peptide and insulin can point to T1D
• Glutamic Acid Decarboxylase Autoantibodies (GADA or Anti-GAD)
  This test looks for antibodies built against a specific enzyme in the insulin-producing pancreatic beta cells.
• Insulin Autoantibodies (IAA)
  This tests looks for the antibodies targeting insulin.
• Insulinoma-Associated-2 Autoantibodies (IA-2A)
  This test looks for antibodies mounted against a specific enzyme in beta cells. Both the IA-2A and GADA tests are common T1D antibody tests.
• Zinc Transporter 8 (ZnT8Ab)
  This test looks at antibodies targeting an enzyme that is specific to beta cells.
• Islet Cell Cytoplasmic Autoantibodies (ICA)
  Islet cells are clusters of cells in the pancreas that produce hormones, including insulin. This test identifies a type of islet cell antibodies present in up to 80 percent of people with T1D.

 

[Souvenir]

Let the people who know about running health service actually run it!

Amen!

@Souvenir Classic symptoms of type 1/LADA is weight loss. A type 1 lacks insulin or enough insulin to properly metabolize the food you eat. So you will be starving and usually eat more, blood sugars go up but you lose weight because you are peeing out the energy from the food you do eat. If you don't eat, then you might still be making some insulin to keep a finger test in normal ranges. Thirst is your bodies way to try to cope with getting rid of glucose that can't be used. 50% of type 1's get it after the age of 30 and 35% of of type 1's are misdiagnosed as a type 2 at first. LADA and type 1 are the same thing, LADA is just the description added and used when you get type 1 when you are older.

The problem is LADA/Type 1 it is a slow process. You lose the ability to make insulin over time until you stop altogether or hit the point to make enough. Diet and lifestyle works at first because it can take 8 years plus to completely lose the ability to make insulin.

Two tests are critical to know if it's type 1. An antibody test, which a lot of countries just do a GAD test, (but there are others too,) which if positive is a sign you are a type 1. But there are some type 1's that test negative and don't make insulin and they don't know why. Then a C-Peptide test which tests your actual insulin production. If low or low normal it's a sign of being a type 1, as you lack the ability to make insulin or enough insulin. High or high normal is asign of being a type 2 because you make extra insulin because you are insulin resistant and your body makes more to make up for it.

It's important to know, unfortunately a lot of type 1's find out by going into DKA. DKA is not from high blood sugar, it's from a lack of enough insulin. You want to keep track of the symptoms of DKA and if they fit get immediately to emergency. You get sick pretty fast.

I was misdiagnosed for over 8 years. I was put on insulin after a few years because medications kept making me sick, which is probably what saved me from ever getting critical. But also probably what helped to be to the misdiagnosed for so long. If you weren't eating and you are still making some insulin,your blood test could show up in "normal" ranges. A1c doesn't always go out of "normal"ranges for years, since you still make some insulin that works.My first couple of yearsmy A1c was completely in normal ranges and by the third year it had crept up to only be in the prediabetic range. Nothing the doctors thought was abnormal.

I'm not saying you are a type 1. I have no idea. But it is something you might press your doctor about investigating if it makes sense to you. Also be aware to watch for DKA.

Diabetic Ketoacidosis (DKA) – Warning Signs, Causes & Prevention

Stay informed on warning signs & symptoms of DKA. Discover our range of diabetes products to manage ketones and avoid diabetic coma.

diabetes.org

• C-Peptide
  While most tests check for antibodies, this test measures how much C-peptide is in a person’s blood. Peptide levels typically mirror insulin levels in the body. Low levels of C-peptide and insulin can point to T1D
• Glutamic Acid Decarboxylase Autoantibodies (GADA or Anti-GAD)
  This test looks for antibodies built against a specific enzyme in the insulin-producing pancreatic beta cells.
• Insulin Autoantibodies (IAA)
  This tests looks for the antibodies targeting insulin.
• Insulinoma-Associated-2 Autoantibodies (IA-2A)
  This test looks for antibodies mounted against a specific enzyme in beta cells. Both the IA-2A and GADA tests are common T1D antibody tests.
• Zinc Transporter 8 (ZnT8Ab)
  This test looks at antibodies targeting an enzyme that is specific to beta cells.
• Islet Cell Cytoplasmic Autoantibodies (ICA)
  Islet cells are clusters of cells in the pancreas that produce hormones, including insulin. This test identifies a type of islet cell antibodies present in up to 80 percent of people with T1D.

Thank you so much for such an incredibly informative, thorough, helpful answer.