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T2 to T1
- Thread starter Jensman
- Start date
- Status
Hi everyone and thanks for the add. Hoping to get a bit of advice. I was diagnosed with T2 30 years ago and am now 63. Originally I was diet controlled but had to start metformin to keep things under control. I was on metformin till last year when I was told I could come off it and go back to being diet controlled which was brilliant news. A couple of months ago my hba1c was coming back slightly raised but not enough to be a concern. 2 weeks ago I was asked to do some finger prick testing at home as my hba1c was still increasing. My BSL’s were coming back around 12 to 13 but I also had them coming in low at around 3.9. The diabetic nurse now thinks I’m possibly T1. I have to go for a “special” blood test to test my antibodies and see what’s happening. Anyway the advice I’m asking is how much of a game changer is this if it does come back T1. I don’t drink, don’t smoke and my diet is good. I’m actually quite scared at the moment as there was a lot of “umming “ and “ahhhing” from the diabetes nurse.
Inka
Well-Known Member
- Relationship to Diabetes
- Type 1
That would be a long build up to Type 1 @Jensman unless you were unfortunate enough to get Type 1 on top of Type 2. The tests will hopefully give you an answer.
Type 1 is treated with insulin. It’s an auto-immune condition and quite different to Type 2. So the major change would be insulin. This then would cause a few changes eg you’d have to tell the DVLA, etc. There are lots of Type 1s here so you’d get support and advice here. You might also be referred to a consultant, so would get extra support that way.
Keep a close eye on your blood sugars. The anti-bodies tests take a while to come back so you just need to watch things in the meantime.
Type 1 is treated with insulin. It’s an auto-immune condition and quite different to Type 2. So the major change would be insulin. This then would cause a few changes eg you’d have to tell the DVLA, etc. There are lots of Type 1s here so you’d get support and advice here. You might also be referred to a consultant, so would get extra support that way.
Keep a close eye on your blood sugars. The anti-bodies tests take a while to come back so you just need to watch things in the meantime.
'
Thank you for the info Inka. Possibly big changes ahead. It’s the waiting for results that’s the hard bit. My finger pricks are all over the place
Inka
Well-Known Member
- Relationship to Diabetes
- Type 1
Just take one day at a time and focus on recording your results. If it’s not Type 1, then your home glucose tests will provide useful information anyway.
If they start going really high, contact your GP or nurse rather than wait for the test results.
Spathiphyllum
Well-Known Member
- Relationship to Diabetes
- Type 1
People aren't born with Type 1 diabetes. We become T1D because our immune systems, for unknown reasons, decide to start attacking our beta cells and eventually kill off so many of them that we can no longer produce enough insulin to survive.
At any age, you can suddenly become T1D. And, because the causes of T1 and T2 are totally different-- T1 being caused by autoimmune disease, T2 being caused by genetic susceptibility plus excess visceral fat-- there is no reason why someone couldn't develop T2 and then also T1. Just like there's no reason why someone couldn't develop T2 and then also develop rheumatoid arthritis-- another autoimmune disease, like T1D.
People with poorly controlled T2D may end up needing insulin because their beta cells have been working so hard for so long-- trying to pump out higher and higher levels of insulin to try to overcome their bodies' insulin resistance-- that their beta cells eventually become exhausted. But that doesn't sound like Jensman's case.
With any luck, Jensman will have an answer when the autoantibody tests come back. Maddeningly, these tests are not absolutely conclusive, in that a small proportion of people with T1D test negative for autoantibodies; but, if the result is positive for one or more of the relevant autoantibodies, that's definitive.
Spathiphyllum
Well-Known Member
- Relationship to Diabetes
- Type 1
Dear Jensman-- I'm not going to tell you not to be scared; being told you may have T1D is scary. AND-- not 'but', and-- if you are diagnosed as T1D, it is survivable, and it does get less scary. What I mean is: don't be afraid of being afraid; do reassure yourself that you will be able to cope and things will turn out ok eventually. I hope that makes sense!
And yes, the waiting for the autoantibody test results is hard! But in the meantime, at least you know what you need to do with your diet to try to keep your BG levels from getting too high until/unless you get insulin. In fact, look on the bright side: having had T2, you're way ahead of the game when it comes to the skills you will need if you have developed T1! Wishing you all the best.
Hi. Can you let us know whether you have any excess weight? If so then the T2 diagnosis may still be correct but you have some insulin resistance which a lower-carb diet should help with. If you are slim then being tested for T1 makes sense. Note that T1 can be caused by viruses as well as antibodies so it can be more than an autoimmune condition in adulthood. The GAD test will check for antibodies but a second test, C-Peptide, will check for your actual insulin level. This second test is important if the GAD is negative.
My understanding is that it is still an autoimmune condition even when caused by virus. The insulin producing cells are killed by your body not the virus.
Spathiphyllum
Well-Known Member
- Relationship to Diabetes
- Type 1
That's my understanding too. The idea is that some viruses can sometimes trigger your immune system to start attacking your beta cells (the insulin producing cells), which is what causes the harm, not the virus itself.
On Dave's point regarding C-peptide: this doesn't check your insulin level, it checks how much insulin your own body is producing; it's a by-product of your 'endogenous' insulin production. So, even if you're already injecting insulin, the C-peptide test is still useful: it can tell you whether your own body is still producing any insulin on top of the 'exogenous' insulin you've injected, and if so how much.
C-peptide is really the most important test in practical terms! If the level is below X (600, if I recall correctly), your body is not producing enough insulin and you need to inject; and that can happen whatever your weight is.
What the C-peptide test doesn't tell you is whether, if your body is not producing enough insulin, that's because you've developed T1D or because you're T2 but your beta cells are exhausted.
You could ask, 'Why does it matter?' ... And I'm not sure there's a good answer to that!
Other than-- most of us just want to know. Even if that leads to further questions for which as yet there are no solid answers, like 'Why did my @%!!?£! immune system suddenly decide to attack me??' ...
Thanks for that. I weigh just under 13 stone but my diabetic nurse is happy with that. It goes down in the spring/summer when I am more active. The c-peptide test has been mentioned before. My mam was T1, not sure if that makes any difference.
rebrascora
Well-Known Member
- Relationship to Diabetes
- Type 1
- Pronouns
- She/Her
Really great explanation by @Spathiphyllum at post #10 above.
The only bit that I would like to clarify...
If you are Type 1 and your immune system has killed off your beta cells to the point that you now need insulin (you are Type 1) then you should automatically be offered Freestyle Libre sensors on prescription and perhaps be able to access an insulin pump at some point in the future and have an intensive education course like DAFNE.
If however the beta cells have basically become worn out due to overwork trying to overcome insulin resistance (insulin dependent Type 2) then you would not automatically qualify for Libre although you might manage to make a special case for yourself in certain circumstances but would probably involve jumping through hoops and being told "No" more than once before possibly getting the go ahead and not have access to a pump, education course etc.
These can make a big difference to your diabetes management and should not be the case as it creates a 2 tier system, but it is the current situation..... So that Type 1 label can be an important factor in opening doors for more support.
Anyway, good luck with your GAD antibody test. If they offer a C-peptide test, ask for it to be a blood test as the urine test is less reliable and often requires pre-sample preparation which no one tells you about but can make a big difference to the result. I can't remember if you have to eat within an hour before collecting the sample or something. The blood test is usually done at a hospital because it needs to be frozen within 20 mins of being drawn and then sent off to the lab in that frozen state and most GP practices don't have facilities to do that. To be honest both GAD and C-peptide are best authorized and the results interpreted by an experienced consultant as they are not always as clear cut as you might hope and sometimes need to be looked at in conjunction with clinical presentation.
If you are Type 1 or more accurately LADA (Latent Autoimmune Diabetes in Adults) which is sometimes referred to as Type 1.5, it may be that a Covid infection if you have had Covid in the last 6 months, or possibly the Covid vaccine could have triggered your immune system to kill off some remaining beta cells, causing your system to reach a tipping point where it can no longer manage to balance your BG levels within it's now limited insulin production capability.
As regards starting on insulin, the thought of it is scary, but the reality is much less so. Needles are tiny, modern insulin regimes allow you to eat what and when you like and whilst it is overwhelming at first with so much to think about, much of it soon becomes automatic..... In the same way as learning to drive a car was really complicated at first and you had to think about every single step oif the process, like checking it is out of gear, starting the engine, pressing the clutch and selecting first gear, checking ahead and behind, indicating and pulling out. Once you have been driving a while your body just does all those things subconsciously and all you have to think about is which road you need to take to get to where you want to be.
This forum and it's wonderful members have been a massive support to me in getting me through those early weeks and months when a lot of stuff the nurse said was going in one ear and out the other or didn't make sense, and it filled in a lot of the blanks that I didn't take in or wasn't told by the nurse.... whose time is obviously quite limited. Diabetes and insulin are just part of my everyday life now and I am very confident in adjusting my doses, even if I don't always get the desired outcome from those dose adjustments! 🙄 Diabetes doesn't always play by the rules and in fact it mostly makes the rules and then changes them just when you are getting the hang of it..... the ever moving goal posts! It is perfectly possible to live well with it though and you just have to give it a bit more thought before you do stuff to keep yourself safe.
My advice would be to visit the forum regularly and ask lots of questions even if you may feel like you should know the answer. Don't ever feel awkward about asking again.... and again if necessary... until you understand. Diabetes is very complicated especially when you start on insulin and it can be very individual, so there is an element of using yourself as a guinea pig to see what works and what doesn't for you personally. We are here to support you, particularly if insulin becomes necessary regardless of Type.
The only bit that I would like to clarify...
The reason it matters and it may not be fair to Type 2s is unfortunately the level of support you are given and the technology you can potentially access to help you manage your diabetes.
If you are Type 1 and your immune system has killed off your beta cells to the point that you now need insulin (you are Type 1) then you should automatically be offered Freestyle Libre sensors on prescription and perhaps be able to access an insulin pump at some point in the future and have an intensive education course like DAFNE.
If however the beta cells have basically become worn out due to overwork trying to overcome insulin resistance (insulin dependent Type 2) then you would not automatically qualify for Libre although you might manage to make a special case for yourself in certain circumstances but would probably involve jumping through hoops and being told "No" more than once before possibly getting the go ahead and not have access to a pump, education course etc.
These can make a big difference to your diabetes management and should not be the case as it creates a 2 tier system, but it is the current situation..... So that Type 1 label can be an important factor in opening doors for more support.
This information seems a little odd. If your HbA1c was raised, but not to a level causing concern, it seems odd that they would ask you to monitor your BG levels. Normally, particularly with someone whose diabetes is relatively well controlled, they would only have their HbA1c checked once or maybe twice a year. It would be very unusual for it to be done less that 3 months apart uless you were perhaps suffering significant symptoms which would warrant checking it. Did they put you back on Metformin or some other diabetes medication. Also really unusual that yu would get an occasional low reading if your levels are generally up in the 10-12 range unless you were on insulin or a medicine like Gliclazide. Usually once your beta cells die off or are flagging, they are unable to throw out enough insulin to bring you down low. Once you start injecting insulin, it can ease the strain on them and they sometimes revive a bit, but without insulin it is usually a one way trend to higher and higher levels. Of course, the 3.9 could have been a rogue test strip or some sort of meter error.
Anyway, good luck with your GAD antibody test. If they offer a C-peptide test, ask for it to be a blood test as the urine test is less reliable and often requires pre-sample preparation which no one tells you about but can make a big difference to the result. I can't remember if you have to eat within an hour before collecting the sample or something. The blood test is usually done at a hospital because it needs to be frozen within 20 mins of being drawn and then sent off to the lab in that frozen state and most GP practices don't have facilities to do that. To be honest both GAD and C-peptide are best authorized and the results interpreted by an experienced consultant as they are not always as clear cut as you might hope and sometimes need to be looked at in conjunction with clinical presentation.
If you are Type 1 or more accurately LADA (Latent Autoimmune Diabetes in Adults) which is sometimes referred to as Type 1.5, it may be that a Covid infection if you have had Covid in the last 6 months, or possibly the Covid vaccine could have triggered your immune system to kill off some remaining beta cells, causing your system to reach a tipping point where it can no longer manage to balance your BG levels within it's now limited insulin production capability.
As regards starting on insulin, the thought of it is scary, but the reality is much less so. Needles are tiny, modern insulin regimes allow you to eat what and when you like and whilst it is overwhelming at first with so much to think about, much of it soon becomes automatic..... In the same way as learning to drive a car was really complicated at first and you had to think about every single step oif the process, like checking it is out of gear, starting the engine, pressing the clutch and selecting first gear, checking ahead and behind, indicating and pulling out. Once you have been driving a while your body just does all those things subconsciously and all you have to think about is which road you need to take to get to where you want to be.
This forum and it's wonderful members have been a massive support to me in getting me through those early weeks and months when a lot of stuff the nurse said was going in one ear and out the other or didn't make sense, and it filled in a lot of the blanks that I didn't take in or wasn't told by the nurse.... whose time is obviously quite limited. Diabetes and insulin are just part of my everyday life now and I am very confident in adjusting my doses, even if I don't always get the desired outcome from those dose adjustments! 🙄 Diabetes doesn't always play by the rules and in fact it mostly makes the rules and then changes them just when you are getting the hang of it..... the ever moving goal posts! It is perfectly possible to live well with it though and you just have to give it a bit more thought before you do stuff to keep yourself safe.
My advice would be to visit the forum regularly and ask lots of questions even if you may feel like you should know the answer. Don't ever feel awkward about asking again.... and again if necessary... until you understand. Diabetes is very complicated especially when you start on insulin and it can be very individual, so there is an element of using yourself as a guinea pig to see what works and what doesn't for you personally. We are here to support you, particularly if insulin becomes necessary regardless of Type.
Spathiphyllum
Well-Known Member
- Relationship to Diabetes
- Type 1
I should have clarified, for Jensman: I was only diagnosed with T1D 8 weeks ago, in my 50s-- and have never had T2D-- so it is still all quite scary and difficult for me!
However-- even in just two months, it's got significantly better; and I hope to be like Rebrascora and others on this forum when I grow up. ; )
Regarding sensors: I hadn't realised there was such a difference between the NHS rules for T1Ds and for insulin-dependent T2Ds! That is unfair and irrational. Regarding pumps, though: the official rules, currently, are unreasonable restrictive even for T1Ds. ...
Bottom line, though-- like Rebrascora, I've found this forum massively helpful, so I'll take this opportunity to say heartfelt thanks.
Bruce Stephens
Well-Known Member
- Relationship to Diabetes
- Type 1
Yes. There's some rationale: if someone with T2 is taking just basal insulin a couple of times a day in fixed doses, I think it's reasonable to suggest they might not get much value from continuous monitoring. But some people really are taking insulin very much like people with T1 do and they really should be treated the same (and be able to get pumps on the same basis).
Agreed. I think the NICE guidance for that is a bit old. I don't remember whether it's being updated currently but it could do with an update. I'm hoping we get lucky with the closed loop guidance, though I think it's just as likely that starts off being offered to people who qualify for a pump currently.
rebrascora
Well-Known Member
- Relationship to Diabetes
- Type 1
- Pronouns
- She/Her
Personally I think that there may be less need for pumps for some people now that Libre and other CGM allow us to see what our levels are doing 24/7.
I am not sure I could justify the expense or environmental impact of using a pump and doubt it would significantly improve my Time in Range from what I can achieve now. I am sure I would really struggle if I didn't have Levemir as my basal insulin, because it allows me the flexibility I need. If I was trying to manage my diabetes on a single dose basal particularly a long acting one like Tresiba or Toujeo then a pump would seem like a good option, but the Levemir and Libre together enable me to balance things reasonably well, particularly now that I have the knowledge and experience to adjust the Levemir. I think the DAFNE course was a bit of a turning point with gaining confidence to adjust Levemir and the more I experiment with adjusting it, the more confident I have got since then..... even when I get it wrong 🙄 .... it is all a learning process.
For me at the moment 3.5 years in, I wouldn't want a pump. I think it is also important for people to have a solid working knowledge of managing their diabetes via MDI so that if the pump fails or they need a break from it for some reason, they are competent and confident to go back to MDI without too much anxiety. I think there may be an element of people thinking that pumps are press and go, when in reality they take quite a lot of input and probably more knowledge than MDI. I also think there are some Type 2 diabetics who use large amounts of insulin due to insulin resistance who would perhaps not be suitable for a pump. I believe it is recommended not to inject more than 80 units into the same site.... it may be less than that, personally I prefer not to inject more than 12 units into the same site and I currently split my 20u basal between 2 injections to improve absorption, so I am not sure how a pump would get around large volume insulin injections (obviously bolus injections with a pump since the basal is trickled in) or in fact if there is an upper limit to the amount of insulin it can deliver as an hourly basal rate, so there may be logistical reasons why a pump may not be appropriate for a Type 2 on MDI, but certainly Libre could be equally beneficial to Type 2s on MDI and should be made available to those who want it.
Bruce Stephens
Well-Known Member
- Relationship to Diabetes
- Type 1
If I remember correctly that was also the conclusion of a trial comparing moving MDI to pump and SMBG to CGM: CGM produced most of the benefit in HbA1c reduction.
I'm also OK on Levemir (and Novorapid is working OK for me). I'd mostly like a pump to loop it, because while I can (usually) keep high TIR, it takes rather more effort than I'd like. I'd love a system that would let me (safely) forget about diabetes for a few hours now and again.
WOW!!! Thank you everyone on this site for taking the time to read my post and for all the info. It’s all a bit of a minefield for me at the moment. I’m hoping when I see the diabetic nurse on Tuesday I can get a bit more clarity on what’s happening to me, and use the information you guys have given me to better understand my diabetes whatever the outcome.
AJLang
Well-Known Member
- Relationship to Diabetes
- Type 1
Having a pump does depend on your individual circumstances eg there is absolutely no way that I could bolus for my evening meal in one dose. Say, fo example I eat 50 carbs for dinner it’s one or 0 units at mealtime and the rest spread over six hours. Doesn’t matter how low or high my carbs are Or the balance of carbs/fat/protein. So for some of us on the pump (a lot of us?) we couldn’t manage on MDI without serious problems even with a Libre/CGM.
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