Unclear diagnosis

[Red_Fox22]

Hi everyone, new poster here following diagnosis in late Jan.


Like most people, the diagnosis has been rather challenging to come to terms with but I seem to present in a somewhat ambiguous way and my medical team are sending out mixed messages which is causing havoc with my mental health.


Brief details. I am 37 year old slim male was diagnosed with diabetes (not clear T1 or T2) back in January. AC1 was 109 and I was displaying signs of ketones in urine.


Dr (who is a specialist) was shocked and wanted to send me to A&E there and then. Eventually we agreed this was not necessary but he suspected I was T1 but would need to do further tests. Dr did as many tests as he felt necessary and finally concluded, contrary to his initial impressions, I am T2.


Should mention my mum and her dad were both T2 albeit developed later in life and both got it under control without meds.


He was worried about my very high AC1 and wanted me to take meds immediately but as my Mum had been quite successful in reducing her BS through diet alone I wanted to have a reasonable bash at this. After one month, the AC1 came down to 92 but he persuaded me that I was still very much in the danger zone and I needed metformin ASAP. So I have been on this for a month or so and its fine apart from increased levels of tiredness.


Went to see a recommended dietician today and she has freaked me out as she is saying I pretty much must be a T1 as I am too thin and my AC1 is so high (even after the 17 point one month drop ). She thinks my meds are wrong and I should see a consultant.


Obviously I will get a second opinion if one is offered but what do people here think?


The initial worry about being a T1 was pretty awful, I (rightly or wrongly) would find a T1 diagnosis so much harder to cope with.


I should stress my Dr is very capable and a specialist and has taken special interest in me due to my unusual circumstances.

 

[Indie1]

Didn't they measure your C-peptide level? Also they should have done test on antibodies, but low C-peptide level alone can say quite definitely that you are T1.

The initial worry about being a T1 was pretty awful, I (rightly or wrongly) would find a T1 diagnosis so much harder to cope with.

I was also worried, but than I released that there is much more research going on for T1 and some are close to be approved [1]. So in this sense "T1" is better

1. http://viacyte.com/products/product-overview-pipeline/

 

[Red_Fox22]

Yes, it was a C peptide test that he did which led him to the "definitive" conclusion.

I am sure it is correct I am just thrown by my dietician who I am sure is well meaning but has given me a huge scare.

 

[Lamont D]

My 'specialist' GP didn't know why a type two on no meds was having hypos! (I'm not diabetic!)

Dieticians have no medical training as such and her diagnosis should be treated with contempt!

Hi everyone, new poster here following diagnosis in late Jan.


Like most people, the diagnosis has been rather challenging to come to terms with but I seem to present in a somewhat ambiguous way and my medical team are sending out mixed messages which is causing havoc with my mental health.


Brief details. I am 37 year old slim male was diagnosed with diabetes (not clear T1 or T2) back in January. AC1 was 109 and I was displaying signs of ketones in urine.


Dr (who is a specialist) was shocked and wanted to send me to A&E there and then. Eventually we agreed this was not necessary but he suspected I was T1 but would need to do further tests. Dr did as many tests as he felt necessary and finally concluded, contrary to his initial impressions, I am T2.


Should mention my mum and her dad were both T2 albeit developed later in life and both got it under control without meds.


He was worried about my very high AC1 and wanted me to take meds immediately but as my Mum had been quite successful in reducing her BS through diet alone I wanted to have a reasonable bash at this. After one month, the AC1 came down to 92 but he persuaded me that I was still very much in the danger zone and I needed metformin ASAP. So I have been on this for a month or so and its fine apart from increased levels of tiredness.


Went to see a recommended dietician today and she has freaked me out as she is saying I pretty much must be a T1 as I am too thin and my AC1 is so high (even after the 17 point one month drop ). She thinks my meds are wrong and I should see a consultant.


Obviously I will get a second opinion if one is offered but what do people here think?


The initial worry about being a T1 was pretty awful, I (rightly or wrongly) would find a T1 diagnosis so much harder to cope with.


I should stress my Dr is very capable and a specialist and has taken special interest in me due to my unusual circumstances.

I would get a second opinion and insist on repeating tests, you can never get enough information about what is happening for diagnosis.

 

[Bluetit1802]

Hi and welcome,

Do you know the actual result of your C-peptide test, and did you also have a GAD test?

Let me tag @Daibell who was initially misdiagnosed at T2, which was later changed to late onset T1 known as LADA.

 

[Red_Fox22]

Thanks.

I kind of thought that having a drop of 17 points in one month is pretty respectable and indicates some insulin function.

Will definitely go for second opinion but feeling this is likely just to confirm that I am t2.

 

[AM1874]

Hi @Red_Fox22 .. and welcome
I hope your diagnosis is clarified and finalised for you soon.
I've tagged @daisy1 and she will be sending you a wealth of valuable information shortly.
You have made a great move coming here .. just ask your questions and you will get the info, advice and support that you need

 

[Richram]

Hi

Can I just ask

1) what is your Dr "specialist" is it a GP?

2) take a dietician with a pinch of salt

3) HbA1C doesn't really differentiate between the two or possibly other type

4) I'd say see a diabetic specialist, which is often delivered in the community no mattter what your diagnosis

5) type 1 tend to become ill quickly if not treated

6) ketones can be caused by lots of things

I often see diagnosis of DKA but know people can have ketones and be acidosis but not be type 1.

Taking meds at first while making your life style changes is also an option as your will reduce your CBG

Being thin is not a reason to not be type 2 unfortunately


I can totally understand how frustrating this is. The system is slow and lots of advice that changes.

HCP very good at confusing things

I'd say your not a true type 1 if your well despite no insulin taken and it's quite a few months later now. Key principles still apply.

Best of luck!!!

 

[azure]

Thanks.

I kind of thought that having a drop of 17 points in one month is pretty respectable and indicates some insulin function.

Will definitely go for second opinion but feeling this is likely just to confirm that I am t2.

What are your daily blood test results like? Ie what numbers are you getting?

I think a GAD test would be sensible if there was any doubt about your diagnosis. Did you lose any weight prior to,diagnosis?

 

[Red_Fox22]

I don't actually test myself- Dr's advice. I think I should start despite what he says.

Yes, a GAD test was mentioned today but I assume my Dr would have considered this if he thought there was any real doubt. I was given a pretty definitive diagnosis so I will not be impressed if there was a further test that could have declared it one way or the other.

 

[Bluetit1802]

I don't actually test myself- Dr's advice. I think I should start despite what he says.

Getting a meter and self testing is essential if you want to get control of this disease. Your doctor was wrong, but this is what they are all advised to say to T2s not on insulin, so not surprising he said it. Please buy a meter and test regularly every day. Testing before meals and again an hour and 2 hours after first bite will show you what that food has done to your levels and will help you find a diet that suits you. If you also keep a food diary including portion sizes and record your levels alongside, you will soon see patterns emerging and be able to reduce the carb content of the meal accordingly.

 

[Daibell]

Yes, it was a C peptide test that he did which led him to the "definitive" conclusion.

I am sure it is correct I am just thrown by my dietician who I am sure is well meaning but has given me a huge scare.

The c-peptide test is fairly conclusive so he did the right test. It is not accurate so it only shows a Yes or No. I had mine done privately and was 1.19 in a range of 1.1 to 4.4 which was conclusive enough for me to say I was in a LADA honeymoon period. I think you should ask the Dr what your reading was and what the range was. Being just inside the 'good' range may just mean you are on the T1 pathway. My insulin needs have increased over 4 years so I suspect a c-peptide test now would show me below the 1.1 bottom limit. Time will tell with you. If the tablets such as Metformin, Gliclazide and/or Sitagliptin together with a low-carb diet don't work then you are T1. Don't worry about going onto insulin; it's a nuisance and not a problem and gives you great flexibility.

 

[Red_Fox22]

Thanks all.

In terms of assessing whether the meds/diet works, what sort of drop should I be expecting per month?

I did a 17 point drop in one month and that was with no meds.

Would a T1 manage that?

 

[catapillar]

low C-peptide level alone can say quite definitely that you are T1

No it doesn't. What a cpeptide test does is show whether or not you are producing insulin. If it show you aren't producing insulin it doesn't tell you why. It's the why you aren't producing insulin that determines what type of diabetes it is. It's easy to assume no/low endogenous insulin production means type 1. But that's a bit over simplistic, it's perfectly possible that a type 2 diabetic can have low/no insulin production.

The only diagnostic test for type of diabetes that can give a definitive answer is a positive GAD test. A positive GAD test is type 1. But a negative GAD test doesn't necessarily mean not type 1, about 25% of type 1 are GAD negative.

 

[Daibell]

No it doesn't. What a cpeptide test does is show whether or not you are producing insulin. If it show you aren't producing insulin it doesn't tell you why. It's the why you aren't producing insulin that determines what type of diabetes it is. It's easy to assume no/low endogenous insulin production means type 1. But that's a bit over simplistic, it's perfectly possible that a type 2 diabetic can have low/no insulin production.

The only diagnostic test for type of diabetes that can give a definitive answer is a positive GAD test. A positive GAD test is type 1. But a negative GAD test doesn't necessarily mean not type 1, about 25% of type 1 are GAD negative.

Hi Catapillar. As you know I don't agree with you on this. It all depends on how you categorise or define T1 versus T2. I prefer the categorisation that relates to how the condition needs to be treated rather than a narrow definition of cause. This latter view is the way Diabetes UK defines things which is why I resigned as you can end up with the wrong treatment as I did; not good. Yes a T2 can have low insulin but my understanding is that occurs largely after a very long period of very high blood sugar? I agree with your comment about GAD. I was GAD negative and I suspect my damage was possibly due to a virus as I had a high white cell count around the time of diagnosis but that's purely a guess.

 

[Pauntiep]

Can you start out as t2 and become t1? A consultant once said that about me as I am now insulin dependent, and apparently my pancreas has stopped producing insulin?

 

[catapillar]

Can you start out as t2 and become t1? A consultant once said that about me as I am now insulin dependent, and apparently my pancreas has stopped producing insulin?

No. You're an insulin dependent type 2 diabetic. Type 2 does not become type 1. They are separate conditions. Type 1 is an autoimmune disease. Type 2 is any diabetes that isn't auoimmune (type 2/1.5/LADA), genetic (MODY) or other defined diabetes (3c/NDM).

 

[azure]

Can you start out as t2 and become t1? A consultant once said that about me as I am now insulin dependent, and apparently my pancreas has stopped producing insulin?

No, you can't. You're still Type 2 but now need insulin.

Type 1 is a separate and different condition. Type 2 can't progress to Type 1.

 

[catapillar]

It all depends on how you categorise or define T1 versus T2. I prefer the categorisation that relates to how the condition needs to be treated rather than a narrow definition of cause.

Different types of diabetes are defined by what causes them, not how they are treated.

Type 1 is an autoimmune disease. MODY is genetic diabetes. Type 3c is diabetes caused by physical damage to the pancreas. NDM is neonatal diabetes. Type 2 is everything else, a ragbag from diet and weight to stress and shift work to hereditary, everything that doesnt fit into the other causes.

Two diabetics might be on entirely different treatment regimes (an insulin pump vs no insulin and low carbing) but still have the same type of diabetes (autoimmune type 1 - but obviously the diet controlled type 1 is rare and must be very early on in the immune system killing off the beta cells).

Just like two diabetics could be on the same treatment (basal/bolus mdi) but have different types of diabetes (type 1 and insulin dependent type 2).

 

[daisy1]

@Red_Fox22

Hello and welcome to the Forum To add to all the information you have already received from members, here is the Basic Information we give to new members and I hope you will find it useful. Ask questions when you need to and someone will be able to help.


BASIC INFORMATION FOR NEWLY DIAGNOSED DIABETICS

Diabetes is the general term to describe people who have blood that is sweeter than normal. A number of different types of diabetes exist.

A diagnosis of diabetes tends to be a big shock for most of us. It’s far from the end of the world though and on this forum you'll find well over 235,000 people who are demonstrating this.

On the forum we have found that with the number of new people being diagnosed with diabetes each day, sometimes the NHS is not being able to give all the advice it would perhaps like to deliver - particularly with regards to people with type 2 diabetes.

The role of carbohydrate

Carbohydrates are a factor in diabetes because they ultimately break down into sugar (glucose) within our blood. We then need enough insulin to either convert the blood sugar into energy for our body, or to store the blood sugar as body fat.

If the amount of carbohydrate we take in is more than our body’s own (or injected) insulin can cope with, then our blood sugar will rise.

The bad news

Research indicates that raised blood sugar levels over a period of years can lead to organ damage, commonly referred to as diabetic complications.

The good news

People on the forum here have shown that there is plenty of opportunity to keep blood sugar levels from going too high. It’s a daily task but it’s within our reach and it’s well worth the effort.

Controlling your carbs

The info below is primarily aimed at people with type 2 diabetes, however, it may also be of benefit for other types of diabetes as well.

There are two approaches to controlling your carbs:

• Reduce your carbohydrate intake
• Choose ‘better’ carbohydrates

Reduce your carbohydrates

A large number of people on this forum have chosen to reduce the amount of carbohydrates they eat as they have found this to be an effective way of improving (lowering) their blood sugar levels.

The carbohydrates which tend to have the most pronounced effect on blood sugar levels tend to be starchy carbohydrates such as rice, pasta, bread, potatoes and similar root vegetables, flour based products (pastry, cakes, biscuits, battered food etc) and certain fruits.

Choosing better carbohydrates

The low glycaemic index diet is often favoured by healthcare professionals but some people with diabetes find that low GI does not help their blood sugar enough and may wish to cut out these foods altogether.

Read more on carbohydrates and diabetes.

Over 145,000 people have taken part in the Low Carb Program - a free 10 week structured education course that is helping people lose weight and reduce medication dependency by explaining the science behind carbs, insulin and GI.

Eating what works for you

Different people respond differently to different types of food. What works for one person may not work so well for another. The best way to see which foods are working for you is to test your blood sugar with a glucose meter.

To be able to see what effect a particular type of food or meal has on your blood sugar is to do a test before the meal and then test after the meal. A test 2 hours after the meal gives a good idea of how your body has reacted to the meal.

The blood sugar ranges recommended by NICE are as follows:

Blood glucose ranges for type 2 diabetes

• Before meals: 4 to 7 mmol/l
• 2 hours after meals: under 8.5 mmol/l

Blood glucose ranges for type 1 diabetes (adults)

• Before meals: 4 to 7 mmol/l
• 2 hours after meals: under 9 mmol/l

Blood glucose ranges for type 1 diabetes (children)

• Before meals: 4 to 8 mmol/l
• 2 hours after meals: under 10 mmol/l

However, those that are able to, may wish to keep blood sugar levels below the NICE after meal targets.

Access to blood glucose test strips

The NICE guidelines suggest that people newly diagnosed with type 2 diabetes should be offered:

• structured education to every person and/or their carer at and around the time of diagnosis, with annual reinforcement and review
• self-monitoring of plasma glucose to a person newly diagnosed with type 2 diabetes only as an integral part of his or her self-management education

Therefore both structured education and self-monitoring of blood glucose should be offered to people with type 2 diabetes. Read more on getting access to blood glucose testing supplies.

You may also be interested to read questions to ask at a diabetic clinic.

Note: This post has been edited from Sue/Ken's post to include up to date information.

Take part in Diabetes.co.uk digital education programs and improve your understanding. They're all free.

• Low Carb Program - it's made front-page news of the New Scientist and The Times. Developed with 20,000 people with type 2 diabetes; 96% of people who take part recommend it... find out why
• Hypo Program - improve your understanding of hypos. There's a version for people with diabetes, parents/guardians of children with type 1, children with type 1 diabetes, teachers and HCPs.