Type 1 or Type 2?

[SussexGeoff]

Hi All,

I've been Type 2 for about a year and a half. Been on Metformin 500mg x 1 (slow release) and Gliclazide 40mg x 3.

They seemed to do nothing and it took a whole year being Hyperglycaemic before nurse decided to start me on Insulin.

She put me on Levemir, starting at 10 units. She said that doesn't mean I'm now Type 1.

A couple of months later, I'm now up to 22 units each morning (+ Metformin and 1 Gliclazide).

Sugars tend to be near target by lunchtime. However, by late afternoon, evening and first thing next morning, my blood sugars are always between 13-17

Does this hint at me being Type 1? Nurse says just increasing the Levemir by 2 units every few days (up to 50 units if needed) until it balances out. She still insists I'm Type 2.

Any advice or similar experiences would be much appreciated!

 

[catinahat]

It's fairly common for them to wrongly jump to a T2 diagnosis.
Unfortunately quite a few of the regular posters were originally misdiagnosis as T2.
T1 & T2 are completely different conditions that share some symptoms , there are tests that can show which flavour of diabetes you have.
if you are unsure about your diagnosis go back and ask to see the results of the tests they used to determine type. If they haven't done anything like a c peptide or antibody tests ask them why not.
If you are T1 your immune system is attacking your insulin producing cells, they can splutter on producing some insulin for a while but you will eventually be dependant on insulin.
T2 usually produce lots of insulin in the early days but their bodies become resistant to it, the pancreas is forced to produce more insulin to deal with the carbs in your diet. More insulin sloshing around can cause even more insulin resistance. So for T2's injecting even more insulin can be counter productive unless their pancreas is so worn out that it is not making enough.

 

[Melgar]

It is a very frustrating place to be in. I totally get it. If you have a firm T2 diagnosis with high insulin secretion, metabolic syndrome, by that we are talking about that cluster of metabolic issues that are grouped together and given the title ‘metabolic syndrome’; insulin resistance and predominantly, but not always, are over weight, and lead a sedentary life style. The sedentary lifestyle could just mean you are stuck sitting at an office desk 8 hours a day and are just too tired to exercise when you get home; are responsive to dietary changes, including weight loss; and /or your D2 medications are successfully treating your high blood sugars, then you know where you are at. You know what needs to be done to keep your blood sugars down. Leading on from that there are supportive communities who all have similar symptoms and challenges and they can relate to what you are going through. It makes a big difference to how you feel about your condition, yourself, how those close to you feel, and the medical professionals you are supporting you to manage your T2 diagnosis.

Life becomes so much more challenging when none of that applies and you have high blood sugars that will not come down no matter what you do, and nobody is listening. You are banging your head against a brick wall. And to those who say it doesn’t matter what type of diagnosis you have, well it definitely does matter. It probably doesn’t matter to them because they are not going through the same frustrating merry-go-round as they have a firm diagnosis whether they are T1,T2 or 3c. Ed sorry for the spelling errors, I will leave them be, but many apologies.


All you can do is demand a c-peptide test to see how much insulin you are actually producing , and get an antibody test. Don’t let them simply do a GAD antibody test because not everyone produces that type of antibody, there are 3 others, ICA, IAA, and IA2/ICA512 antibodies. It is your health and your body not there’s, so demand it. You are in a good position, that sounds rather perverse, but because your blood sugars are high and your meds are not working they will find it difficult to deny you. Don’t let them fob you off, it is not there health that’s at stake it's yours. Demand it. If it turns out you are D2 then at least you know. If you are D1 then you will get the correct meds and the support you need.

 

[SussexGeoff]

Thank you so much both of you. It is really getting me down. So excited when I hit between 5 and 8... Then confused and depressed a few hours later when it's back to 15+

I'll look on the NHS app and my health record to see if I've had that test but I don't think so.

One guy I know questioned why I hadn't been offered an appointment with specialists at the hospital to determine exactly what I'm dealing with.

Is that supposed to be common practice?

I'm still annoyed I was left to suffer with Hyperglycaemia literally 24/7 for over a year (usually running between 18-30 on finger prick tests) Partly my fault for not being more forceful with them.

Such fun!

 

[Melgar]

It's hard and it does not come naturally to be forceful in respect to medical issues. It's bad enough you having to deal with high blood sugars that you cannot stabilize, but then you have to battle to get the proper tests to ascertain what type of diabetes you have. It's so wrong we have to push. You do have expectations that they will due their diligence, but they often don't until your blood sugars become so high they are forced to send you off to a specialist. I am not a medical professional, but I do relate to what you are saying. Push for those tests.

 

[Melgar]

I should also mention that you have found a great site here, with lots of supportive members and lot's of advice as well. Whether you are T2 or T1, there are members here who can help through their own experiences.

 

[SussexGeoff]

I should also mention that you have found a great site here, with lots of supportive members and lot's of advice as well. Whether you are T2 or T1, there are members here who can help through their own experiences.

Exactly why I've come on here in a head banging against the wall kind of despair. Thank you. I'm due for an HbA test on the 22nd, it's at 8.45am so I'll ask, or tell them, I want those tests too.

Which just reminded me. Ever since I was diagnosed, I've not been asked for one fasting blood test so that proves it hasn't been done.

 

[Melgar]

Exactly why I've come on here in a head banging against the wall kind of despair. Thank you. I'm due for an HbA test on the 22nd, it's at 8.45am so I'll ask, or tell them, I want those tests too.

Which just reminded me. Ever since I was diagnosed, I've not been asked for one fasting blood test so that proves it hasn't been done.

They haven't even done the basics! Wow. Just know you are not alone with all this. You have a whole community here.

 

[Lamont D]

Thank you so much both of you. It is really getting me down. So excited when I hit between 5 and 8... Then confused and depressed a few hours later when it's back to 15+

I'll look on the NHS app and my health record to see if I've had that test but I don't think so.

One guy I know questioned why I hadn't been offered an appointment with specialists at the hospital to determine exactly what I'm dealing with.

Is that supposed to be common practice?

I'm still annoyed I was left to suffer with Hyperglycaemia literally 24/7 for over a year (usually running between 18-30 on finger prick tests) Partly my fault for not being more forceful with them.

Such fun!

Get them tests.
If you need to, demand a referral to an endocrinologist.
Sometimes depending on where you are, I know what your username is, but you have the right to see one.
Only an endo can get them tests.

Have you done regular fasting bloods?
Obviously before meds?
Have they told you it is a fasting hba1c test and a full blood panel?

As you can see from the replies there are non here that have had a misdiagnosis or been given the wrong meds, the wrong dietary advice and a total lack of care.

 

[SussexGeoff]

Get them tests.
If you need to, demand a referral to an endocrinologist.
Sometimes depending on where you are, I know what your username is, but you have the right to see one.
Only an endo can get them tests.

Have you done regular fasting bloods?
Obviously before meds?
Have they told you it is a fasting hba1c test and a full blood panel?

As you can see from the replies there are non here that have had a misdiagnosis or been given the wrong meds, the wrong dietary advice and a total lack of care.

It's all been a confusing mess. Never done fasting bloods. Whenever I go for the HbA they always said I didn't need to fast, which I always found a bit strange.

Thanks to guidance, from the likes of yourself and others here, I may finally get sorted and know where I am and what I'm dealing with.

Morning finger prick tests (just after waking) are still always between 13 to 17.

Exertive energy, like working hard in Mums garden for 2hrs, may bring me down to 10.

I'll see what I can find out on Monday.

Thank you

 

[EllieM]

Whenever I go for the HbA they always said I didn't need to fast, which I always found a bit strange.

Hba1cs are determined by the last 3 months' blood sugars, so you don't need to fast for them. As a confirmed T1 (54 years) they don't ask me for fasting blood tests.

I should also point out that levemir doesn't typically last for 24 hours and most T1s who take it have two doses. But they aren't producing any of their own insulin so need both a basal (the levemir or something else) and short acting insulin before meals.

I believe/guess (disclaimer I am not a doctor) your nurse is assuming you are T2 so are still producing insulin (not always the case for very long term T2s) so just need a "top up" from the levemir. And T2s are typically insulin resistant so, if they do need insulin, can end up taking very large amounts.

Without the tests it's impossible to know whether you are T1 or T2 at the present stage, though the relatively rapid progression to insulin is a red flag for needing those tests.

In your position, I'd be pushing for a referral to an endocrinologist so that an accurate diagnosis can be made.

 

[SussexGeoff]

Hba1cs are determined by the last 3 months' blood sugars, so you don't need to fast for them. As a confirmed T1 (54 years) they don't ask me for fasting blood tests.

I should also point out that levemir doesn't typically last for 24 hours and most T1s who take it have two doses. But they aren't producing any of their own insulin so need both a basal (the levemir or something else) and short acting insulin before meals.

I believe/guess (disclaimer I am not a doctor) your nurse is assuming you are T2 so are still producing insulin (not always the case for very long term T2s) so just need a "top up" from the levemir. And T2s are typically insulin resistant so, if they do need insulin, can end up taking very large amounts.

Without the tests it's impossible to know whether you are T1 or T2 at the present stage, though the relatively rapid progression to insulin is a red flag for needing those tests.

In your position, I'd be pushing for a referral to an endocrinologist so that an accurate diagnosis can be made.

Thanks so much Ellie Great and useful information. I'm on the case tomorrow!

Didn't know about the HbA not needing fasting so good to know.

 

[SussexGeoff]

Here's another confusion to the mix... If the Metformin 500mg slow release and Gliclazide have never worked, why am I still being told to stay on them?

Apologies for the (maybe obvious answer) questions but I find it all so hard to understand. I'm sure you've all been there!

Could they be messing up the effect of the insulin?

I've been tempted to stop taking them both many times

 

[Melgar]

No Metformin will unlikely mess up your insulin dosing. Metformin reduces the amount of glucose your liver produces and also reduces the amount of sugars your intestines absorb into your blood stream. They are trying to reduce the amount of insulin you take. You may also have some insulin resistance which basically means your body is not able to utilise the insulin well because your cells are resistant to it. If you have to inject large amounts of insulin then that is an indicator that your sensitivity to insulin is reduced and you need to take more of it to bring your bloodsugars down. So basically they are trying to reduce the amount of insulin you have to inject.
My brother, who has Latent Autoimmune Diabetes in Adults (Type1 Diabetes) or LADA since 2020, injects insulin, but he also takes metformin as well to counter his insulin resistance. In short Metformin helps increase insulin sensitivity.

 

[Lamont D]

Gliczide is a blood glucose drug designed to lower levels.
It is usually used for T2s who have high uncontrollable blood glucose levels.
If the Gliczide doesn't work, it may be necessary to try another meds.
But the underlying question is the cause of it all.
And a specialist can only do that.
Best wishes tomorrow.

 

[Daibell]

Mis-diagnosis is a problem and the definition of T1 is even more of a problem. The assumption that 'T1' (i.e. lack of insulin) is only caused by auto-immunity is wrong as the beta cells can be attacked by viruses and that's not 'auto-immunity'. This confusion causes the Drs/Nurses to place you in the T2 category regardless as T2 is a dumping ground for anything that's not understood. I'm still labelled as T2 but one of my endos agrees it's a mess and treats me as T1 but my last C-peptide test was just above the T1 limit so he was not allowed to define me as T1. The important thing is to have the right insulin regime. Try splitting the Levemir as many of us do as it doesn't last 24 hours. The web shows some very good 3D graphs of dose versus active time. If you aren't on the full Basal/Bolus regime do ask for a Bolus insulin to be added even if you don't need to inject much at present - you may do later. Despite many T1s saying they can eat whatever they want I can't, so be prepared to reduce the carbs if needed. If I have too many carbs my insulin needs sky-rocket and I lose control. Experiment and find out what works for you.

 

[Antje77]

No Metformin will unlikely mess up your insulin dosing.

Depends.
I did an 8 month trial of metformin to see if it would make a difference in my insulin doses (relatively high doses, pretty well controlled diabetes) but I hardly noticed a difference.

A couple of months later, I'm now up to 22 units each morning (+ Metformin and 1 Gliclazide).

Sugars tend to be near target by lunchtime. However, by late afternoon, evening and first thing next morning, my blood sugars are always between 13-17

Like @EllieM said, Levemir typically doesn't last a full 24 hours, so your high morning numbers may well be because it's running out by the time you take your next dose.
On top of that many of us (both T1 and T2) find that morning numbers tend to be on the high side because of the Dawn Phenomenon, our helpful livers dumping extra glucose in our bloodstream to help us get going for the day.

Near target by lunchtime is good, apparently the insulin, medication and morning activity is doing the job.

But you start to rise again in the afternoon.
What is a typical lunch and evening meal for you?
If your current medication is working to keep reasonable blood glucose until after lunch, it may be something you eat?

None of what is happening tells you anything on which type of diabetes you may have, it fits with both types.

I fully agree with the others that things are moving too slow with your diabetes care, you might want to push for a more hands on approach.

Good luck!

 

[SussexGeoff]

Depends.
I did an 8 month trial of metformin to see if it would make a difference in my insulin doses (relatively high doses, pretty well controlled diabetes) but I hardly noticed a difference.

Like @EllieM said, Levemir typically doesn't last a full 24 hours, so your high morning numbers may well be because it's running out by the time you take your next dose.
On top of that many of us (both T1 and T2) find that morning numbers tend to be on the high side because of the Dawn Phenomenon, our helpful livers dumping extra glucose in our bloodstream to help us get going for the day.

Near target by lunchtime is good, apparently the insulin, medication and morning activity is doing the job.

But you start to rise again in the afternoon.
What is a typical lunch and evening meal for you?
If your current medication is working to keep reasonable blood glucose until after lunch, it may be something you eat?

None of what is happening tells you anything on which type of diabetes you may have, it fits with both types.

I fully agree with the others that things are moving too slow with your diabetes care, you might want to push for a more hands on approach.

Good luck!

Thanks Antje. Lunch maybe something simple like brown rice, onions and mushrooms (cooked in just a little bit of butter)

Don't get me started on what to eat I've always been a fussy eater anyway so now it's really difficult. Carbs do my head in, everything has them.

As it gets warmer I'll have a lot more salad based lunches.

Nurse wants my BG levels between 5 & 8 before bed and first thing in the morning. At the moment, that's impossible.

Just before bed now they're 10.4. Lowest I've had for ages but then I've done intense gardening for 7 hours today which isn't sustainable. I'll be wiped out for 3 days now!

Onwards and upwards!

 

[SussexGeoff]

Mis-diagnosis is a problem and the definition of T1 is even more of a problem. The assumption that 'T1' (i.e. lack of insulin) is only caused by auto-immunity is wrong as the beta cells can be attacked by viruses and that's not 'auto-immunity'. This confusion causes the Drs/Nurses to place you in the T2 category regardless as T2 is a dumping ground for anything that's not understood. I'm still labelled as T2 but one of my endos agrees it's a mess and treats me as T1 but my last C-peptide test was just above the T1 limit so he was not allowed to define me as T1. The important thing is to have the right insulin regime. Try splitting the Levemir as many of us do as it doesn't last 24 hours. The web shows some very good 3D graphs of dose versus active time. If you aren't on the full Basal/Bolus regime do ask for a Bolus insulin to be added even if you don't need to inject much at present - you may do later. Despite many T1s saying they can eat whatever they want I can't, so be prepared to reduce the carbs if needed. If I have too many carbs my insulin needs sky-rocket and I lose control. Experiment and find out what works for you.

That's so wrong putting you as a T2 when another test tomorrow might easily say T1.

It's all so complicated but, to even get the c-peptide test would be good.

I did read any type of virus can send BG into a rollercoaster.

So much to learn and work out. As you say, lots of adjusting and tweaking to get there.

 

[SussexGeoff]

Gliczide is a blood glucose drug designed to lower levels.
It is usually used for T2s who have high uncontrollable blood glucose levels.
If the Gliczide doesn't work, it may be necessary to try another meds.
But the underlying question is the cause of it all.
And a specialist can only do that.
Best wishes tomorrow.

Thank you Lamont. Yes, at one time I was on Gliclazide 40mg x 4 a day + the Metformin 500mg (slow release). Did absolutely nothing.