How Do They Diagnose What Type Of Diabetes You Have?

[ickihun]

Usually it is just based on profiling.

Anyone who is overweight or obese would be assumed to be Type 2. This is because the pancreas is still able to produce HUGE amount of insulin to maintain the fat storage.

We often read that T2D does not produce sufficient insulin. That is misleading because the more accurate description is that we do not produce sufficient insulin to overcome our carbs intake. In reality we have been producing 2-3 times MORE insulin than those who are not glucose impaired. So lowering our insulin needs should be a top priority.

The difficulty of correct diagnosis then often lies with those in the normal weight range or has sudden weight loss. They have to be tested for the C-peptide levels and GAD antibodies in order to determine if they suffer from an autoimmune condition and have severely impaired insulin production. In this case, insulin therapy is necessary.

I don't produce enough insulin for my weight. So losing weight is a huge help. If you/I can lose on high quantities of insulin units injected. Hence bariatric surgery.
This is where my fat threshold hold the key. I'm going to discover it.

 

[Gina G]

It's quite simple - they guess and I'm not joking based on the my own experience and many posts over the years. I was stick thin when diagnosed with all the symptoms and an HBa1C of around 12% but I'm still listed as T2 15 years later and on insulin now of course as I'm actually T1. My DN refused to accept I could possible be T1. Some GPs/DNs either refer you which is good if T1 is suspected or order GAD and c-peptide tests which is also good. It appears a few T1s are mis-diagnosed and actually T2 but around 15% of T2s are thin and likely to be mis-diagnosed T1s.

This is just what my son is going through now, had a sickly weekend, blood sugar 17 , they diagnosed type 1 back in March, slim age 30 ....gave him insulin 10units at night, after a couple of days he had to come off it as his fasting BS was 2.5 and felt bad through out the day.
He has been insulin free since then (6months) controlled by diet only his readings are absolutely normal
Specialist has said he isn't diabetic while his readings are normal, so just a waiting game now.
Apart from losing 2 stone he seems really well and looks great

 

[n1ck]

For me it was while i was under the knife! I'd gone in for a routine inguinal hernia repair op and they did there usual pre med checks and scratched their chins...then came back with the doctor and did some more blood pricking tests and scratched their chins again...then sat me down before my op to tell me they thought i might have diabetes. I had no symptoms whatsoever and based upon my age and physical health they concluded i was type 1 and within 5 days i was injecting insulin!

 

[Dixon1995]

It's not always clear cut, for me it was because my blood glucose reading was 28.6mmol/L and had the highest ketones in my urine and lost 4.5 stone in weight.

My uncle only had the weight loss and no traceable ketones in urine so diagnosed as a type 2, even though he is type 1 now, 2 weeks after he's type 2 diagnosis. He had blood ketones but was still believed to be type 2, until an endo doctor over ruled it

 

[david1968]

For me it was while i was under the knife! I'd gone in for a routine inguinal hernia repair op and they did there usual pre med checks and scratched their chins...then came back with the doctor and did some more blood pricking tests and scratched their chins again...then sat me down before my op to tell me they thought i might have diabetes. I had no symptoms whatsoever and based upon my age and physical health they concluded i was type 1 and within 5 days i was injecting insulin!

Similar story for me, except that in my case they found out during the op - came round to them asking me if I knew I was diabetic! Diagnosed Type 2 and put straight on insulin - six yeasr on and after a lot of ups and downs I'm now treating it by diet and exercise.

 

[SueJB]

They take a blood sample and dip their finger in it if it tastes really sweet odds on your Type 1 if not so sweet maybe a Type 2

But on a more serious note from what I have seen it is all done of the HbA1c or the classic 50 Shades Of Diabetes that you sometimes see around here.

I think it is sliding scale as the information here suggests https://www.diabetes.co.uk/what-is-hba1c.html

No expert so it is an educated guess

Think quite a few of the consultants do an educated guess too. I prefer your taste test, just as reliable:***:

 

[SueJB]

I find it astonishing that diagnosis is so random.

Someone goes in with a reading of 23 and they are diagnosed as Type 1 despite being an adult. Surely if someone had Type 1 from childhood they would have had symptoms? Why could it not be LADA?

I go in with sugar levels that are so high even the meter said uh oh, and straight away I am diagnosed as a Type 2 despite not even being overweight.

6 years later despite my best efforts, taking the max dose of metformin and gliclizide as well as being a whole stone lighter (I am 8 St) I am now having to take insulin. It just pisses me off how arbitrary this whole diagnosis thing is.

@XxTinkerxx I get the same impression of it being rather arbitrary and there is a lot of generalisations, age, weight etc for diagnosis even before any GAD or c-peptide test. I was diagnosed as T1 before any results came in................... a turn round of 2 days!!
And I always thought LADA was a car, sorry guys, my humour

 

[JohnEGreen]

One of the latest diagnostic tools.

 

[bulkbiker]

One of the latest diagnostic tools.

View attachment 28827

Might be more accurate than some HCP's we have heard of...!

 

[XxTinkerxx]

I am reading this thread back with tears in my eyes. Ever heard the saying "if only I knew then what I know now"?

Last month I spent 5 days in hospital with DKA. Spent 4 hours in A&E with DRs and nurses running around, while they worked out whether to put me in intensive care or the AMU. The DN told me I was "very ill and very close"... close to what I am not sure. But having read the Internet I can only assume coma or death.

The morning after my admission to hospital, the Consultant (an Endocrinologist) told me I was not a Type 2 and that the "care" I had been receiving was inadequate. After a year on Insulatard, I was slowly increasing the dosage to the point where it wasn't even working when i got DKA.

The Metformin and Insulatard was ditched, and I was put on Novorapid and Lantus, which worked straight away.

I have lost count of the number of times I asked the Dr and the DN if there could be the possibility I was something other than Type 2 as nothing was working. I even suggested LADA. They were adamant I was Type 2. Anyway, needless to say I am not impressed with my Surgery and I am still extremely angry.

2 days after I left hospital, I received a call from the Receptionist at the Dr's Surgery regarding my "stay in hospital due to a hypo". I corrected her and said "I think you will find it was a bit more than a Hypo ". She didn't acknowledge it and went on to say that someone would call me from the Diabetic Team regarding my hypo. To say I was incensed is an understatement. Still waiting for that call 6 weeks later.

My care was moved to the Diabetes Clinic of the hospital and sadly things are not really any better.

I am struggling to come to terms with this Type 1 diagnosis as my sugars are like a Yo-yo, so I am clearly doing something wrong. The 1 unit per 10 grams of carb ratio doesn't work for me. It barely makes a difference. I've piled on shed loads of weight and I am pretty much at my wits end right now.

I have had one telephone call with the hospital DN since I was discharged from hospital. I was meant to have one on Monday (9th) no one called. I called them and left a message yesterday. No call. Rang again today and left a message. No call. I will start calling them twice a day everyday as of tomorrow. I am just so fed up.

Sorry this is so long winded and all over the place. I have left out quite a bit as I am conscious this is already a long post.

ETA: I had several blood tests done and they all confirmed I am a Type 1.

 

[ert]

ETA: I had several blood tests done and they all confirmed I am a Type 1.

Sorry, you're having a tough time. You could ask to email a DN nurse. I find that they are more likely to answer. In the meantime, I recommend: https://www.bertieonline.org.uk/
What test results did you get to confirm type 1?

 

[XxTinkerxx]

Sorry, you're having a tough time. You could ask to email a DN nurse. I find that they are more likely to answer. In the meantime, I recommend: https://www.bertieonline.org.uk/
What test results did you get to confirm type 1?

I don't know the exact name but the DN told me she was having my bloods tested for it as she needed the confirmation to send to my GP surgery so they can add the FreeStyle Libre to my repeat prescription.

The call on Monday was to discuss the blood test results.

 

[DCUKMod]

are
The call on Monday was to discuss the blood test results.[/QUOTE]

Oh dear Tinker, you really have had a very rough ride. I'm so pleased the hospital were able to bring you back from that incredibly serious and dangerous place you found yourself in.

I'm not one for making complaints. I'd much rather try to engage a person, or organisation for change, but sometimes a complaint is in order, and I do think that's the case with your surgery.

They may be being "hands off" at the moment as your care has been transferred to the hospital, but the bottom line is they should be able to help you out better than they are. I might also be inclined to challenge why no action was being taken when things were really not going in the right direction, over a considerable period.

In your shoes right now, I would try a two pronged approach. I would be approaching both the Clinic, by whatever means you have, and also engage my GP. If your GP feels they don't have the specialised knowledge you need, then they can access it for you.

GPs have a natty system where they can email into a specialist area for advice for "trickier" stuff. My GP told me about this when we were trying to sort out my thyroid, which just wouldn't "get with the programme".

They email in, and receive a response from that specialist area. The response might be to try x, y or z, to to ask the GP to make a referral (urgent or otherwise), or to order up tests etc.

For me, that hastened (although hastened it was still a long trudge) a workable solution to improve the quality of my life.

Maybe some things to consider?

I really do feel for you. You must be angry, disappointed and frustrated all in one moment. That's hard when all you want is to feel better and be healthier.

 

[Antje77]

What a horrible situation you're in, and I wouldn't wish your Dr's surgery or their receptionist on anyone!

I am struggling to come to terms with this Type 1 diagnosis as my sugars are like a Yo-yo, so I am clearly doing something wrong. The 1 unit per 10 grams of carb ratio doesn't work for me.

It takes time to find the right dose. The 1:10 ratio is only a starting point from where you and your consultant can start to work out your ratio's.
Some people eat 30 grams on a single unit of insulin, others need a unit of insulin for every gram of carbs.
For instance, in the morning I need between 5 to 8 units for a breakfast of around 6 gr carbs, a 1:10 ratio wouldn't even touch it! In the evening, I need way less insulin for more carbs, so this working out the right dose is pretty complicated and takes time.

That said, you do need some guidance starting to work on this, so please keep nagging the hospital, both by phone and e-mail to tell them your insulin isn't doing enough at the moment and you need advice on how to change your dosages.
In the mean time, I agree with @ert , have a look into https://www.bertieonline.org.uk/. I don't have experience with it myself (I'm not in the UK) but from what I've heard it can be very helpful!

 

[XxTinkerxx]

Oh dear Tinker, you really have had a very rough ride. I'm so pleased the hospital were able to bring you back from that incredibly serious and dangerous place you found yourself in.

I'm not one for making complaints. I'd much rather try to engage a person, or organisation for change, but sometimes a complaint is in order, and I do think that's the case with your surgery....snip!!

Thank you for reply. I agree with you that a complaint to the GP is in order, but I don't even know where to start. I am so angry right now, and I know I need to calm down before I put pen to paper as I will end up accusing them of all sorts and saying things I shouldn't. I need to figure out how to approach them, so if anyone wants to help me with that feel free!

I think they are more relieved that the hospital has taken me on for now, as they were never able to help me manage this condition. All they ever said to me was:
· it will get worse
· you will end up on insulin
· take more tablets
· you don't fit the profile
· eat more carbs

When the blood HbA1C results came back (more times than not it was above 90, and a couple of times over 100), their response was "It can't continue, what shall we do?" Which used to tick me off no end. What do you mean "what shall WE do? Isn't that your job to figure this out?" I tried low carb and keto, been self-funding the freestyle libre for almost 2 years now. The only way to keep my bloods in the normal region was to not eat, and I told them this. The DN told me not to eat Egg Mayo as the mayo was high in carbs, but I should have weetabix or porridge for breakfast. *insert several eye rolling emojis here*

I am going to continue to harass the hospital. They said I could have the Freestyle Libre on the NHS, and that still hasn’t appeared on my repeat prescription list. They knew I was using it and they got me to link up to the hospital system, so right now they are getting data that I am paying £96 a month for, for free, meanwhile they do sweet ***** adams to help me. They gave me the link to the online BERTIE course, but I was stuck at the bit where you have to work out your insulin to carbohydrate ratio. After a week I skipped over it and carried on. My background insulin seems to be ok. I have a couple of lows during the night over the course of a week, but they don’t wake me up anymore. That only happens if it goes below 3.

It is a bit of a mindf* as well trying to get my head around what I am being told with regards to eating carbs. After 7 years of doing my best to avoid them, to being told I need to eat some now in order to take this insulin, is freaking me out. I feel like I am going to end up with some sort of eating disorder. Things like bread, potatoes were totally eliminated from my diet and now I am being told I should include carbs and dose accordingly. What the eck does Bolus even mean anyway???? A lot of diet programmes out there seem geared towards T2D

 

[Circuspony]

@XxTinkerxx the trouble with being diagnosed during covid is you really have been left to fend for yourself.

Your bolus dose for meals takes time to get right. It changes throughout the day, dependent on fat content as well as carbs and if you exercise you might have to drop it considerably. You don't HAVE to have carbs but you'll need less insulin if you are low carb.

The best way I found in the early days was to keep a diary and be really quite boring about what I ate. So same breakfast every day. Test before eating, inject what I think is the right amount, test again 2 hours later. If my BG is high then inject 1/2 unit more the following day. Same for lunch and dinner.

It was a couple of weeks before I starting seeing patterns.

I never hugely found the diabetic team that helpful with my dosages - and i still get it really, really wrong sometimes 3 years down the line.

Hang on in there!

 

[DCUKMod]

Thank you for reply. I agree with you that a complaint to the GP is in order, but I don't even know where to start. I am so angry right now, and I know I need to calm down before I put pen to paper as I will end up accusing them of all sorts and saying things I shouldn't. I need to figure out how to approach them, so if anyone wants to help me with that feel free!

I think they are more relieved that the hospital has taken me on for now, as they were never able to help me manage this condition. All they ever said to me was:
· it will get worse
· you will end up on insulin
· take more tablets
· you don't fit the profile
· eat more carbs

When the blood HbA1C results came back (more times than not it was above 90, and a couple of times over 100), their response was "It can't continue, what shall we do?" Which used to tick me off no end. What do you mean "what shall WE do? Isn't that your job to figure this out?" I tried low carb and keto, been self-funding the freestyle libre for almost 2 years now. The only way to keep my bloods in the normal region was to not eat, and I told them this. The DN told me not to eat Egg Mayo as the mayo was high in carbs, but I should have weetabix or porridge for breakfast. *insert several eye rolling emojis here*

I am going to continue to harass the hospital. They said I could have the Freestyle Libre on the NHS, and that still hasn’t appeared on my repeat prescription list. They knew I was using it and they got me to link up to the hospital system, so right now they are getting data that I am paying £96 a month for, for free, meanwhile they do sweet ***** adams to help me. They gave me the link to the online BERTIE course, but I was stuck at the bit where you have to work out your insulin to carbohydrate ratio. After a week I skipped over it and carried on. My background insulin seems to be ok. I have a couple of lows during the night over the course of a week, but they don’t wake me up anymore. That only happens if it goes below 3.

It is a bit of a mindf* as well trying to get my head around what I am being told with regards to eating carbs. After 7 years of doing my best to avoid them, to being told I need to eat some now in order to take this insulin, is freaking me out. I feel like I am going to end up with some sort of eating disorder. Things like bread, potatoes were totally eliminated from my diet and now I am being told I should include carbs and dose accordingly. What the eck does Bolus even mean anyway???? A lot of diet programmes out there seem geared towards T2D

Tinker - Do you have online access to your medical records?

 

[XxTinkerxx]

Tinker - Do you have online access to your medical records?

I have access to "Patient Access" But it gives me no details whatsoever, other than my repeat prescriptions and a list of who has accessed my records.

 

[DCUKMod]

I have access to "Patient Access" But it gives me no details whatsoever, other than my repeat prescriptions and a list of who has accessed my records.

Have you asked for access to your full medical records? Theoretically, you should be able to gain access to it, although it seems not all practises have enabled that yet - despite their contracts requiring them to do so.

To gain access, I had to complete a form, and provide ID (the details of that were on the form), then wait for my User ID and Password.

My suggestion was that would allow you to make a powerful case (for example, despite 3/6/10/however many appointments, during most of which I asked for clarification on the type of diabetes I was living with, the following transpired (describe DKA).

In the meantime, you have plenty of time to make a complaint. In your shoes, my actions would be:

- request access to my full medical records. There are several layers of access they can make available, so make it clear you want your full record, for your lifetime. OK, your complaint only covers a relatively (to your life span) brief period of time. It's amazing how useful and informative our records can be.
- If your practise states they are unable to do that, I would make a subject matter request for my full record, although they could reasonably resist printing out your lifetime record. If they did, I would opt for since a couple of years prior to diagnosis

Only when I had that data would I consider building my complaint. That will also throw a bit more time into the mix, to let your emotions settle a bit.

All of that alongside trying to get my blood sugars into a better place.

Don't be too hard on yourself. You and your body have taken a real beating in recent times, and now you are left trying to work out the jigsaw without any clues.

You've had a hard time. Time to be a little kind to yourself.

 

[XxTinkerxx]

Have you asked for access to your full medical records? Theoretically, you should be able to gain access to it, although it seems not all practises have enabled that yet - despite their contracts requiring them to do so.

To gain access, I had to complete a form, and provide ID (the details of that were on the form), then wait for my User ID and Password.

My suggestion was that would allow you to make a powerful case (for example, despite 3/6/10/however many appointments, during most of which I asked for clarification on the type of diabetes I was living with, the following transpired (describe DKA).

In the meantime, you have plenty of time to make a complaint. In your shoes, my actions would be:

- request access to my full medical records. There are several layers of access they can make available, so make it clear you want your full record, for your lifetime. OK, your complaint only covers a relatively (to your life span) brief period of time. It's amazing how useful and informative our records can be.
- If your practise states they are unable to do that, I would make a subject matter request for my full record, although they could reasonably resist printing out your lifetime record. If they did, I would opt for since a couple of years prior to diagnosis

Only when I had that data would I consider building my complaint. That will also throw a bit more time into the mix, to let your emotions settle a bit.

All of that alongside trying to get my blood sugars into a better place.

Don't be too hard on yourself. You and your body have taken a real beating in recent times, and now you are left trying to work out the jigsaw without any clues.

You've had a hard time. Time to be a little kind to yourself.

Thank you. I really appreciate this.