Confused whether Type 1 or Type 2

[Lissia]

Hi
i understand this, I was diagnosed as having Diabetes several years ago the GP looked me up and down and decided 'fat person must be type 2'
for considerable amount of time, I was placed on type two medication as that’s what was my diagnosis, the problem was none of the type two medications worked I was on Metformin then moved to saxagliptin then placed on gliclazide but my sugars kept on rising, until one morning when I woke up at 34mmol, I was sent to a diabetes specialist who worked at the local hospital, she was a bit puzzled so she asked for some blood tests to be done and she went through my entire history from my teenage years, she also accessed my last 12 years of blood tests and spent hours comparing them and how they changed, after I caught Covid in 2020 my blood sugars got so high at one point I was at 39 as that was as high as my meter went, in reality she thinks it was much higher, however she contacted me a few hours later and with the recent blood results that it wasn’t type two she decided in fact that that I had LADA diabetes, which would only be able to be controlled using insulin, she changed me to basal and bolus insulin immediately and within three hours there was a considerable difference in blood levels.
She was really pleased with this and I asked a few months later why my records still said type two even at the hospital?, she told me that it’s not easy to change a diagnosis of diabetes type even as a specialist particularly when you are treated by injectable insulin anyway.
I asked her to change it simply because I felt that I was being talked down to in hospital regarding my size as my records said type two when in actual fact they were incorrect and I actually had a subform of type 1.
she said the only reason to change a diagnosis would be to enable a change to the treatment schedule but as I was treated via insulin, I was already on the correct treatment there would be no real medical benefit.
When I was in hospital at Christmas I had to constantly correct the staff over my diagnosis, but actually they were very good, also when they realised that I had my freestyle libre2 plus CGM prescribed for free on the NHS they realised that what I said made sense.
The GP records still say type 2 but somewhere on various different records it says type1….irritating and confusing that’s for sure.
So I think the bottom line is as long as you are aware and you are able to correct people in the medical field for example when you go to hospital and they check your details, I think that’s the most important thing.
As irritating as it is because you know the diagnosis is incorrect you are at least being treated with the correct medication.
there is no doubt in my mind that we are not in the minority of people receiving an incorrect diagnosis and that that is unfortunately largely down to medical ignorance..

 

[Jac miller]

I have the same problem . It is so irritating . I would suggest you get a medic alert bracelet or necklace stating that you are a T1 diabetic.

 

[Daibell]

Your surgery isn't trying hard enough. My surgery uses SystmOnline and staff can add notes onto the system including a new diagnosis of T1. You are obviously T1 with a positive GAD, hospital DKA etc. The NHS doesn't officially recognise LADA/T1.5 - only T1 or T2. That's a problem I also have but with negative GAD and no recorded DKA my surgery won't change my records but at least my diabetes consultant treats me as a 'T1' as I'm essentially LADA. I would write a letter to the Practice Manager asking for your records to have a note added for T1 etc.

 

[Ashintheuk]

When you are given a T2 diagnosis, there is no duty of care to put you onto the gold standard insulin therapy medical devices like pumps and closed loops which those with a T1 diagnosis are able to apply for .... it's penny pinching by NICE. Nothing more or less !

 

[Maples]

Hi everyone and a Happy New Year to you. I have just paid a visit to an emergency Doctor today with an eye infection, (Blepharitis), my own fault but hey. The query I have is when I was first diagnosed with Diabetes I was told it was Type2. Put on Metformin and plodded along. Went back to GP numerous times and was in trouble because my BS was so high. The nurse tested me for Ketones and was shocked it was ++++ on the urinalysis scale. I was sent for a blood test to measure GAD which came back as +2000 and was then diagnosed with Type1. Now the problem I have is that my medical notes have not been changed to this effect, so I am treated as T2. I have asked on numerous occasions for it to be changed and they say that it has been done but the GP I saw today said your notes are saying you are down as T2. Now I have been on a DAPHNE course, which is for T1 only and also had DKA whilst in hospital having a hip replacement. I also inject before meals. How can these two events happen if I'm T2. How do I get my GP to change my notes or should I change to another Practice. Sorry for the long post and hopefully someone here will have an answer. Thank you for reading.

I have exactly the same problem and nothing has changed for 10 ten years. I was told that because I have late onset diabetes (it started when I was 59) so it was noted as type 2 at the start and that’s what it stays at on the records. We’re not true type ones.

 

[Ashintheuk]

I have exactly the same problem and nothing has changed for 10 ten years. I was told that because I have late onset diabetes (it started when I was 59) so it was noted as type 2 at the start and that’s what it stays at on the records. We’re not true type ones.

That would depend on how much insulin you are making of your own. Even full T1's have small amounts of residual insulin production. This is about funding of therapies, not the requirement to keep patients safe.

 

[dib22]

There is a test for this. It assesses how your pancreas is performing and will confirm if type 1 but, if you're like me, you fall into the could be either category.

The importance in UK is nhs doesn't provide things like libre sensor for type 2 diabetics even if they're on insulin which is nonsensical imo. I now have a libre sensor though after my pancreatic function was tested which is a godsend. I had no idea I was having hypos over night and have now adjusted my insulin and food in take to help prevent this.

 

[Chris24Main]

DKA in a T2 is the inablility of the cells in the organs to absorb glucose transported around in the bloodstream because they aren't responding to the insulin also circulating (otherside known as insulin resistance). DKA in a T1 is because the pancreas isn't making any insulin, and so the blood glucose can't again pass into the cells.
When this happens, the cells consume themselves to stay alive, but this comes at a price and that is the production of ketones.
Both my father and sister have gone DKA and needed hospitalisation, both diagnosed and treated as T2. I suspect a combination of poor pancreatic function and some insulin resistance.

Sorry - I need to jump in here, I'm sure this is a genuine belief, but;

Diabetic Ketoacidosis - is the state where your blood has become acidic. The clue is in the name. The problem is the ph level of the blood, and the fact that enzymes cannot function in that level of acidity. That's it, period.

The reason it happens, is that ketone production has become unregulated - and is literally out of control, in the concurrent state of very high blood glucose. Ketones are acidic, so too many (and we're talking massive amounts) will have an effect on the ph of the blood.

The reason that happens is..
in T1 there is no insulin and the body cannot use any of the glucose, so the liver goes into panic production of ketones.
in T2 the insulin resistance (or combination of impaired pancreatic function and IR) is so great that the body cannot use any of the insulin, therefore cannot use any of the glucose, so the liver goes into panic production of ketones.

Regulated production of ketones is perfectly normal, and all animals are doing so almost all the time, babies are born making lots of ketones.

People get this the wrong way round all the time and see ketones as a problem. Ketones are perfectly normal, a source of fuel for every cell in your body, and specifically your brain, where they additionally have positive properties in deeper brain function (involving cleaning out mis-folded proteins).

 

[Ashintheuk]

Sorry - I need to jump in here, I'm sure this is a genuine belief, but;

Diabetic Ketoacidosis - is the state where your blood has become acidic. The clue is in the name. The problem is the ph level of the blood, and the fact that enzymes cannot function in that level of acidity. That's it, period.

The reason it happens, is that ketone production has become unregulated - and is literally out of control, in the concurrent state of very high blood glucose. Ketones are acidic, so too many (and we're talking massive amounts) will have an effect on the ph of the blood.

The reason that happens is..
in T1 there is no insulin and the body cannot use any of the glucose, so the liver goes into panic production of ketones.
in T2 the insulin resistance (or combination of impaired pancreatic function and IR) is so great that the body cannot use any of the insulin, therefore cannot use any of the glucose, so the liver goes into panic production of ketones.

Regulated production of ketones is perfectly normal, and all animals are doing so almost all the time, babies are born making lots of ketones.

People get this the wrong way round all the time and see ketones as a problem. Ketones are perfectly normal, a source of fuel for every cell in your body, and specifically your brain, where they additionally have positive properties in deeper brain function (involving cleaning out mis-folded proteins).

The piece I read gave my explanation that they were produced in the cells. Digging around further, I'm happy to stand corrected !

 

[Chris24Main]

No worries - there is so much confusion surrounding ketones, and most of it is simply that lots of people know about DKA being a problem, and the bit in the word they focus on is the "K" - when that is fine, the problem is the "A".

Biologically speaking, it's better to think of ketone bodies, as a kind of pre-prepared form of cellular fuel. The liver breaks down fatty acid chains into smaller pieces that are now easier for the brain to use. They are actually very good things to have in appropriate amounts.

 

[Tilneyr]

There is a test for this. It assesses how your pancreas is performing and will confirm if type 1 but, if you're like me, you fall into the could be either category.

The importance in UK is nhs doesn't provide things like libre sensor for type 2 diabetics even if they're on insulin which is nonsensical imo. I now have a libre sensor though after my pancreatic function was tested which is a godsend. I had no idea I was having hypos over night and have now adjusted my insulin and food in take to help prevent this.

On the other hand some new "in vogue" medicines are only available and NICE approved for T2.

 

[Colinthejock]

Hi
i understand this, I was diagnosed as having Diabetes several years ago the GP looked me up and down and decided 'fat person must be type 2'
for considerable amount of time, I was placed on type two medication as that’s what was my diagnosis, the problem was none of the type two medications worked I was on Metformin then moved to saxagliptin then placed on gliclazide but my sugars kept on rising, until one morning when I woke up at 34mmol, I was sent to a diabetes specialist who worked at the local hospital, she was a bit puzzled so she asked for some blood tests to be done and she went through my entire history from my teenage years, she also accessed my last 12 years of blood tests and spent hours comparing them and how they changed, after I caught Covid in 2020 my blood sugars got so high at one point I was at 39 as that was as high as my meter went, in reality she thinks it was much higher, however she contacted me a few hours later and with the recent blood results that it wasn’t type two she decided in fact that that I had LADA diabetes, which would only be able to be controlled using insulin, she changed me to basal and bolus insulin immediately and within three hours there was a considerable difference in blood levels.
She was really pleased with this and I asked a few months later why my records still said type two even at the hospital?, she told me that it’s not easy to change a diagnosis of diabetes type even as a specialist particularly when you are treated by injectable insulin anyway.
I asked her to change it simply because I felt that I was being talked down to in hospital regarding my size as my records said type two when in actual fact they were incorrect and I actually had a subform of type 1.
she said the only reason to change a diagnosis would be to enable a change to the treatment schedule but as I was treated via insulin, I was already on the correct treatment there would be no real medical benefit.
When I was in hospital at Christmas I had to constantly correct the staff over my diagnosis, but actually they were very good, also when they realised that I had my freestyle libre2 plus CGM prescribed for free on the NHS they realised that what I said made sense.
The GP records still say type 2 but somewhere on various different records it says type1….irritating and confusing that’s for sure.
So I think the bottom line is as long as you are aware and you are able to correct people in the medical field for example when you go to hospital and they check your details, I think that’s the most important thing.
As irritating as it is because you know the diagnosis is incorrect you are at least being treated with the correct medication.
there is no doubt in my mind that we are not in the minority of people receiving an incorrect diagnosis and that that is unfortunately largely down to medical ignorance..

I was diagnosed with type 2 about 5 years ago. I was originally put on metformin but it clashed with an autoimmune condition I have and was switched to linagliptin. After a couple of months with no change I was prescribed basal insulin on top of the linagliptin. This worked for a while bringing my bg levels back down. My bg meter goes up to 40 but I was off the scale but the basal insulin brought it back into down to between 4&8. Now though without any change in diet or lifestyle it has jumped back up and I've been off the scale again a few times and have been above 20 a lot. I have also lost a considerable amount of weight. I have issues with pains in my feet. My last diabetic eye screening showed minor retinopathy and I have been impotent for a while now. I have been requested to go into my doctor's surgery for an appointment tomorrow as a result of my last blood tests. I think I may have been misdiagnosed but I don't know. I haven't been given much information since diagnosis and I am really concerned and it has left me feeling depressed. I hope I get some sort of answers tomorrow.

 

[Blanchoid]

Hi everyone and a Happy New Year to you. I have just paid a visit to an emergency Doctor today with an eye infection, (Blepharitis), my own fault but hey. The query I have is when I was first diagnosed with Diabetes I was told it was Type2. Put on Metformin and plodded along. Went back to GP numerous times and was in trouble because my BS was so high. The nurse tested me for Ketones and was shocked it was ++++ on the urinalysis scale. I was sent for a blood test to measure GAD which came back as +2000 and was then diagnosed with Type1. Now the problem I have is that my medical notes have not been changed to this effect, so I am treated as T2. I have asked on numerous occasions for it to be changed and they say that it has been done but the GP I saw today said your notes are saying you are down as T2. Now I have been on a DAPHNE course, which is for T1 only and also had DKA whilst in hospital having a hip replacement. I also inject before meals. How can these two events happen if I'm T2. How do I get my GP to change my notes or should I change to another Practice. Sorry for the long post and hopefully someone here will have an answer. Thank you for reading.

When I was first diagnosed they didn't know if I was type 1 or type 2.

When they did the blood test, they didn't test what they needed to, so I had to go back and have another blood test and it took about a month before someone got back to me! My Ketones were also sky high, but I was at the hospital and they gave a couple of vials of Insulin!

And they say the NHS is effective... I can tell you some stories!

I understand it isn't easy to tell from the outset but a blood test should be able to tell you, ESPECIALLY when they test it correctly!!

Maybe they don't want to move you because a Type 1 would be intitled to more things!

In the mean time I think you should look here https://www.england.nhs.uk/contact-us/feedback-and-complaints/complaint/

 

[Antje77]

After a couple of months with no change I was prescribed basal insulin on top of the linagliptin. This worked for a while bringing my bg levels back down. My bg meter goes up to 40 but I was off the scale but the basal insulin brought it back into down to between 4&8. Now though without any change in diet or lifestyle it has jumped back up and I've been off the scale again a few times and have been above 20 a lot.

Are you adjusting your insulin doses based on the amount of carbs you eat and the blood glucose you see? Or are you on fixed doses which clearly don't work at this point?
No matter what type of diabetes you have, if you're on insulin your doses should be adjusted depending on your BG and food.

The unintended weightloss may be a good argument for a referral to an endocrinologist to see if you're a T1 instead of a T2, it's more often seen in T1.
But regardless of your type of diabetes, you need guidance on adjusting your doses.

and I have been impotent for a while now.

With your BG above 20 a lot, this may well be the cause, and it may well improve once you get a better handle on adjusting your insulin and food to stay in a better blood glucose range.