Interested to know about others' LADA / T1.5 journeys

Messages
19
Type of diabetes
LADA
Treatment type
Insulin
Hi everyone!

I was diagnosed with LADA in November in last year. I know a couple of T2 diabetics and a couple of T1 diabteics (including my dad) but I've never met or had the chance to talk to any fellow LADAs / 1.5s!
I guess I'm just interested to know what everyone's stories are, how and when they were diagnosed etc and what treatment they're on!
I'll start. I was originally misdiagnosed as T2 in April last year. One nurse I saw said I could be this inbetween type (LADA) but that I'd need a test for it and she'll refer me. The referral didn't get accepted and all the doctors kept saying I was T2 and I started on metformin. It was pretty frustrating, I just felt like no one was listening and I had to really fight to see a specialist. Anyway, eventually my sugars kept getting higher and it was obvious the metformin wasn't helping and so I got approved to get the antibodies test and was diagnosed with LADA in November last year. Since then I've been on insulin. I'm only on long acting, I take 12 units of Lantus in the morning. My hba1c was at 45 when I was last tested about a month ago which I'm quite happy with. I don't like injecting but sometimes I really wish I was on short acting too so I could eat without my sugars spiking!
Please share your experiences too! :)
 

Daibell

Master
Messages
12,642
Type of diabetes
LADA
Treatment type
Insulin
Hi. I suspect all our LADA stories will be different as destruction of the beta cells can have different causes and different time-scales. It's not just antibodies, of which GAD is just one, that can cause beta cell death as viruses are also a known cause. I believe I had a virus shortly before my DB appeared as I had a high white cell count and mild abdominal ache with no known cause. My own private GAD at age 50 was negative and my private C-Peptide had a result at the low end of the range. 5 years late (last year) another C-Peptide showed a result just abouve the T1 limit. So, my honeymoon has been around 8 years! I was diagnosed as T2 due to ignorance by both my diabetes GPs. My lovely DN last month agreed to do another NHS C-Peptide and said that knowledge of db types has changed a lot in recent years. I would like to see DUK etc categorise any diabetes that shows low insulin output as T1 and db where the patient is overweight and high C-Peptide as T2. I believe the C-Peptide test is quite low cost so should be given wherever there is any doubt about the diagnosis. BTW I'm still listed as T2 in my records but on Basal/Bolus and always been slim.
 

KK123

Well-Known Member
Messages
3,967
Type of diabetes
Type 1
Treatment type
Insulin
Hi everyone!

I was diagnosed with LADA in November in last year. I know a couple of T2 diabetics and a couple of T1 diabteics (including my dad) but I've never met or had the chance to talk to any fellow LADAs / 1.5s!
I guess I'm just interested to know what everyone's stories are, how and when they were diagnosed etc and what treatment they're on!
I'll start. I was originally misdiagnosed as T2 in April last year. One nurse I saw said I could be this inbetween type (LADA) but that I'd need a test for it and she'll refer me. The referral didn't get accepted and all the doctors kept saying I was T2 and I started on metformin. It was pretty frustrating, I just felt like no one was listening and I had to really fight to see a specialist. Anyway, eventually my sugars kept getting higher and it was obvious the metformin wasn't helping and so I got approved to get the antibodies test and was diagnosed with LADA in November last year. Since then I've been on insulin. I'm only on long acting, I take 12 units of Lantus in the morning. My hba1c was at 45 when I was last tested about a month ago which I'm quite happy with. I don't like injecting but sometimes I really wish I was on short acting too so I could eat without my sugars spiking!
Please share your experiences too! :)

Hi there, LADA is actually type 1 but a slower onset (LADA isn't even recognised by my Consultant although the term is fairly common). I was diagnosed as 'pre diabetic' and then 3 years later ended up in hospital with DKA. They veered between type 2 (purely because of my age in my 50s) and type 1 because of my presentation and not fitting the so called type 2 profile in any other way. I was started straight away on long & short acting insulin whilst they did a C Peptide test and an antibody test. Both confirmed type 1.

I think you should contact your Consultant and request you be given short acting insulin to take for your meals. They are pretty amenable to your needs (as a type 1 anyway), all you need to say is that your levels are rising with meals and you are reluctant to eat normally for you because of this. They may have just started you on Lantus only just to see how you went as you might well be in the honeymoon period, meaning you may still be producing some of your own insulin. What are your levels like?, they will be perfectly happy with the hb1ac of 45 which may be why they have left you on Lantus only BUT that is restricting you for which there is no logical need. Ask for short acting and any adjustments can be made with Lantus at the same time to balance you out. x
 
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JMoli

Well-Known Member
Messages
250
Type of diabetes
LADA
Treatment type
Insulin
Hi there, I’m currently in the honeymoon period too and diagnosed late onset type 1 in February. I didn’t have the tests done but gliclazide wasn’t working for me and I presented more as T1 (very slim, lost weight etc)
Im pretty sure I became diabetic after a virus I had in October 2019- I had months of gastro issues and pain. Urine/bloods confirmed diabetes in January, a huge shock as no family history.
I’m currently taking 3 units a Tresiba basal and on one unit novorapid for 35-40g carbs. I’m still struggling with bolus and foods but now have a dietician to help and a therapist/counsellor to talk over a lot of anxiety issues and to help me cope with the diagnosis.

It sounds like bolus will be good for you, to give you more flexibility?
 
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Messages
19
Type of diabetes
LADA
Treatment type
Insulin
I'm not really sure what the true definition of LADA.
I was diagnosed type 1 as an adult in my 30s.
Thankfully, I was not mis-diagnosed as type 2 but I think that was luck as much as anything else there was no blood test for c-peptide or GAD.
I was feeling run down for about 6 months before I went to the doctor and it took a couple of attempts before they decided to test for diabetes (I was initially told it was a UTI and sent away with antibiotics). After that, I was given insulin and my dose gradually rose over the next 8 years.
Not sure what else to share or whether this is/was LADA and/or type 1. To be honest, the label doesn't both me; feel well is more important to me.
Oh whoa, that's frustrating they just thought it was a UTI! But glad they eventually tested you and you got the right diagnosis!
 
Messages
19
Type of diabetes
LADA
Treatment type
Insulin
Hi. I suspect all our LADA stories will be different as destruction of the beta cells can have different causes and different time-scales. It's not just antibodies, of which GAD is just one, that can cause beta cell death as viruses are also a known cause. I believe I had a virus shortly before my DB appeared as I had a high white cell count and mild abdominal ache with no known cause. My own private GAD at age 50 was negative and my private C-Peptide had a result at the low end of the range. 5 years late (last year) another C-Peptide showed a result just abouve the T1 limit. So, my honeymoon has been around 8 years! I was diagnosed as T2 due to ignorance by both my diabetes GPs. My lovely DN last month agreed to do another NHS C-Peptide and said that knowledge of db types has changed a lot in recent years. I would like to see DUK etc categorise any diabetes that shows low insulin output as T1 and db where the patient is overweight and high C-Peptide as T2. I believe the C-Peptide test is quite low cost so should be given wherever there is any doubt about the diagnosis. BTW I'm still listed as T2 in my records but on Basal/Bolus and always been slim.
Oh that's interesting! Yeah I had an appointment with a specialist diabetes doctor a while ago and he said there's lots of new evidence which shows late onset can be often brought on by a bad virus! I had a really bad virus maybe 5 years before diagnosis so not sure if that could have been it or not, but it's interesting. That's crazy and super frustrating you're still listed as T2 after so long!!And that is a long honeymoon period!
 
Messages
19
Type of diabetes
LADA
Treatment type
Insulin
Hi there, LADA is actually type 1 but a slower onset (LADA isn't even recognised by my Consultant although the term is fairly common). I was diagnosed as 'pre diabetic' and then 3 years later ended up in hospital with DKA. They veered between type 2 (purely because of my age in my 50s) and type 1 because of my presentation and not fitting the so called type 2 profile in any other way. I was started straight away on long & short acting insulin whilst they did a C Peptide test and an antibody test. Both confirmed type 1.

I think you should contact your Consultant and request you be given short acting insulin to take for your meals. They are pretty amenable to your needs (as a type 1 anyway), all you need to say is that your levels are rising with meals and you are reluctant to eat normally for you because of this. They may have just started you on Lantus only just to see how you went as you might well be in the honeymoon period, meaning you may still be producing some of your own insulin. What are your levels like?, they will be perfectly happy with the hb1ac of 45 which may be why they have left you on Lantus only BUT that is restricting you for which there is no logical need. Ask for short acting and any adjustments can be made with Lantus at the same time to balance you out. x
Yeah, when I was diagnosed they said I have LADA which is a form of T1. I was also diagnosed as pre diabetic before T2, but luckily my correct diagnosis didn't take 3 years! Sorry to hear that what caused you to get diagnosed correctly was ending up in hospital with DKA when it sounds like that could've been avoided!
Maybe because mine was caught earlier is why they just started me on long acting. But you're right I might ask about starting on short acting. It's not fun injecting but I don't like not being able to eat things I want and always having to think about it etc. My fasting levels are around mid 5s to 7 usually. I don't often check after meals as I was told I don't need to worry about that too much. But the other day I had a brownie which must've had a heap of sugar in it because a couple hours later my BG was at 19.6 which is the highest it's been since I started Lantus (to be sort of expected I guess, it was a brownie). And then I just felt like I shouldn't eat anything for ages. I think I'll start testing more after meals now and talk to my diabetes nurse. Thanks for the advice!
 
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Messages
19
Type of diabetes
LADA
Treatment type
Insulin
Hi there, I’m currently in the honeymoon period too and diagnosed late onset type 1 in February. I didn’t have the tests done but gliclazide wasn’t working for me and I presented more as T1 (very slim, lost weight etc)
Im pretty sure I became diabetic after a virus I had in October 2019- I had months of gastro issues and pain. Urine/bloods confirmed diabetes in January, a huge shock as no family history.
I’m currently taking 3 units a Tresiba basal and on one unit novorapid for 35-40g carbs. I’m still struggling with bolus and foods but now have a dietician to help and a therapist/counsellor to talk over a lot of anxiety issues and to help me cope with the diagnosis.

It sounds like bolus will be good for you, to give you more flexibility?
Oh yeah that's interesting, I have heard that viruses can have something to do with causing late onset! That's crazy you have no family history but I suppose they don't really know exactly what causes it. That sounds like you're on a pretty low amount of both long and short acting which is good! And awesome you have a dietician to help out with all the carb counting and figuring it out, plus a counsellor! It can be pretty overwhelming right. I have a dietician now too, but have only had one phone appointment with her and it was just to give me a general idea of how carb counting works so I could start now before it becomes a necessity.
yeah I agree I think bolus might be a good idea, I think I'll have a talk to my diabetes nurse about it. Thanks :)
 
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JMoli

Well-Known Member
Messages
250
Type of diabetes
LADA
Treatment type
Insulin
Do you have a half unit pen for bolus? When you are on small doses, this may be very helpful.
I do not think they are available of pre-filled pens but who wants flimsy throw-away pens when there are sturdier re-usable ones that are kinder to the planet, anyway?
If you don't already have the half unit pens, I highly recommend requesting them.

Thanks, yes have a half unit pen now. Just waiting until my normal novorapid runs out then I’ll switch. I like that it has a digital display to tell me when I last injected and how much too.
 
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Swillbos

Active Member
Messages
38
Type of diabetes
LADA
Treatment type
Insulin
Hi,

I posted this when I was first diagnosed as potential LADA last July, a few of us have had rather circuitous LADA journeys:

"Between the ages of 30-50, I was overweight, gradually moving up the ranks to full-blown obesity. When I turned 50 I set myself a goal of losing 4 stone over two years. I never really understood how carbs and calories were different but through trial and error I came up with my own DIY weight loss protocol: lots of walking and c1800 cals a day of which no more than a third from carbs, which I estimated at 150g a day. This worked very well for me and I found I was comfortably losing 2-3 pounds every month. When I was diagnosed with type 2 nine months into my regime, I had already lost 1.5 stone (c.10kg) and a tenth of my body weight. The Dr explained the parameters for diagnosis had recently changed, but that at HbA1c of 49, I was officially diabetic. Must admit my initial reaction was disbelief and extreme annoyance that things had changed, but it did spur me on to carry on with my diet and exercise routines.....now I know a lot more I suspect I had probably been diabetic for some time. Three months later my HbA1c had come down to 46 and I was congratulated on "reversing" my diabetes(!)

I lost three stone in a little over a year, and basked in the praise of the local practice nurse......I kept the weight off for a year, and then stressful work and family illness threw me off course, and weight started creeping back on. Nonetheless it was still an unpleasant shock to me when my GP suggested the time had come to start Metformin. It was then that I found this forum and started reading up, and realised that of course I hadn't reversed anything. I responded very well to Metformin (2 x standard 500mg - never had any problems with digestion after the first week or so) and discovered the joys of intermittent fasting, low carb baking and so much else! Over the course of seven years I have lost over five stone (34kg) and a third of my body weight but very, very slowly.

Things started to unravel a bit last summer and Metformin was increased to 1500mg. Then I had a step change in April, no matter what I tried I suddenly couldn't get my blood glucose lower than 15. Started on full whack Metformin (2000mg slow release) and 2mg Glimepiride, fully expecting great results....absolutely zero response, moved up to 4mg Glimeperide and still no improvement. Started panicking, GP told me to hang on in there and give it a chance, but ended up getting referred to the local hospital service and started insulin ten days ago.

I can't tell you how much better I feel now, I don't think I realised how poorly I was until I started insulin. I had high ketones and probably did very well to avoid DKA. Turns out I am LADA after seven years thinking I was type 2: islet cells positive for antibodies, GAD>2,000, HBA1c of 107......"

I am still on a basal only regime 10-14 units of Humulin split into two doses. Pretty certain I should be on bous and basal regime, but due to confusion in my local hospital service......I'm currently putting my énergies into seeing how well I can manage with diet and exercice plus basal.

Good luck with your continuons journey!
 
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Messages
19
Type of diabetes
LADA
Treatment type
Insulin
Hi,

I posted this when I was first diagnosed as potential LADA last July, a few of us have had rather circuitous LADA journeys:

"Between the ages of 30-50, I was overweight, gradually moving up the ranks to full-blown obesity. When I turned 50 I set myself a goal of losing 4 stone over two years. I never really understood how carbs and calories were different but through trial and error I came up with my own DIY weight loss protocol: lots of walking and c1800 cals a day of which no more than a third from carbs, which I estimated at 150g a day. This worked very well for me and I found I was comfortably losing 2-3 pounds every month. When I was diagnosed with type 2 nine months into my regime, I had already lost 1.5 stone (c.10kg) and a tenth of my body weight. The Dr explained the parameters for diagnosis had recently changed, but that at HbA1c of 49, I was officially diabetic. Must admit my initial reaction was disbelief and extreme annoyance that things had changed, but it did spur me on to carry on with my diet and exercise routines.....now I know a lot more I suspect I had probably been diabetic for some time. Three months later my HbA1c had come down to 46 and I was congratulated on "reversing" my diabetes(!)

I lost three stone in a little over a year, and basked in the praise of the local practice nurse......I kept the weight off for a year, and then stressful work and family illness threw me off course, and weight started creeping back on. Nonetheless it was still an unpleasant shock to me when my GP suggested the time had come to start Metformin. It was then that I found this forum and started reading up, and realised that of course I hadn't reversed anything. I responded very well to Metformin (2 x standard 500mg - never had any problems with digestion after the first week or so) and discovered the joys of intermittent fasting, low carb baking and so much else! Over the course of seven years I have lost over five stone (34kg) and a third of my body weight but very, very slowly.

Things started to unravel a bit last summer and Metformin was increased to 1500mg. Then I had a step change in April, no matter what I tried I suddenly couldn't get my blood glucose lower than 15. Started on full whack Metformin (2000mg slow release) and 2mg Glimepiride, fully expecting great results....absolutely zero response, moved up to 4mg Glimeperide and still no improvement. Started panicking, GP told me to hang on in there and give it a chance, but ended up getting referred to the local hospital service and started insulin ten days ago.

I can't tell you how much better I feel now, I don't think I realised how poorly I was until I started insulin. I had high ketones and probably did very well to avoid DKA. Turns out I am LADA after seven years thinking I was type 2: islet cells positive for antibodies, GAD>2,000, HBA1c of 107......"

I am still on a basal only regime 10-14 units of Humulin split into two doses. Pretty certain I should be on bous and basal regime, but due to confusion in my local hospital service......I'm currently putting my énergies into seeing how well I can manage with diet and exercice plus basal.

Good luck with your continuons journey!
Wow what a journey!! That is so awesome you were able to work super hard and get that weight off, well done! Also good on you for not getting to disheartened with your T2 diagnosis and still continuing your weight loss and exercise regime. I was also pretty shocked with my T2 diagnosis I wasn't expecting it and it's not nice to hear.
That sort of makes sense I suppose, I was told that if I did have LADA (before diagnosis) metformin might work for a while and will eventually stop doing anything, which it did very fast, I don't know if it ever worked for me actually. But crazy they put you on such a high dose before realising you aren't type 2!
Hopefully you can start on bolus insulin soon! I'm also hoping for that.
Good luck with your continuous journey also!
 

JMcB

Well-Known Member
Messages
125
Type of diabetes
LADA
Treatment type
Insulin
Hello! I was diagnosed T2 about 3 years ago and tried to control my BG w the keto diet and exercise. That worked for about a year then my sugars began drifting up. My GP didn’t seem terribly concerned so I went to an endo in March this year and was diagnosed with LADA. Also early DKA. Was immediately put on glargine for basal and Humalog for bolus. Have been able to keep things in check but it’s been quite terrifying at times. Because of Covid I’ve not had any education so I’ve been educating myself quite a bit. Have found low carb keeps me pretty stable and I don’t usually have to bolus. I don’t like to bolus as that sometimes sends me lower than I’m comfortable, although I’ve only had one true hypo event.
 

Shari68

Well-Known Member
Messages
47
I was diagnosed LADA late February this year. I was misdiagnosed t2 in 2013, which came as a shock as I have no family history of diabetes t1 or t2 whatsoever. I wasn't overly overweight, a size 12. At that time my hb1ac was 78. I was put on metformin, and my hb1ac came down a bit to around 55. Over the years I just plodded along, my hb1ac went up and down the 50s, then it started to creep up and up. I was prescribed Dapagliflozin, and was on that along with metformin for another couple of years. Then last year my hb1ac went to 95. I was losing lots of weight, without trying. I often felt ill, nauseous, lethargic and really depressed. For a couple of years I had been asking my gp surgery if I could be type 1 but they kept saying no you're definitely type 2. I was eventually referred to a specialist diabetes clinic where the doctor said that I was LADA. It made me angry with my gp surgery that they didn't listen to me. Anyway I was put on Tresiba for the first week, started off at 8 units, then every couple of days it was increased. A week later I was put on Fiasp. I am now on 24 units of Tresiba and 1 unit per 10g. I also am now on the Freestyle Libre Sensor, which has greatly improved my control. I feel so much better, although since being on insulin my appetite has been enormous! I have put on 3 stone since lockdown!
 
Messages
19
Type of diabetes
LADA
Treatment type
Insulin
Hello! I was diagnosed T2 about 3 years ago and tried to control my BG w the keto diet and exercise. That worked for about a year then my sugars began drifting up. My GP didn’t seem terribly concerned so I went to an endo in March this year and was diagnosed with LADA. Also early DKA. Was immediately put on glargine for basal and Humalog for bolus. Have been able to keep things in check but it’s been quite terrifying at times. Because of Covid I’ve not had any education so I’ve been educating myself quite a bit. Have found low carb keeps me pretty stable and I don’t usually have to bolus. I don’t like to bolus as that sometimes sends me lower than I’m comfortable, although I’ve only had one true hypo event.
Oh whoa 3 years is quite a long time with the wrong diagnosis. Good you made the decision to see an endo so you finally got the correct diagnosis! And yeah that's not great timing with covid, but not much you can do about that I guess, do you feel better now that you're on insulin? That's really good low carb helps and means you don't usually need to bolus! That's the positive of LADA, our bodies are still making some insulin so that does come in handy! haha
 
Messages
19
Type of diabetes
LADA
Treatment type
Insulin
I was diagnosed LADA late February this year. I was misdiagnosed t2 in 2013, which came as a shock as I have no family history of diabetes t1 or t2 whatsoever. I wasn't overly overweight, a size 12. At that time my hb1ac was 78. I was put on metformin, and my hb1ac came down a bit to around 55. Over the years I just plodded along, my hb1ac went up and down the 50s, then it started to creep up and up. I was prescribed Dapagliflozin, and was on that along with metformin for another couple of years. Then last year my hb1ac went to 95. I was losing lots of weight, without trying. I often felt ill, nauseous, lethargic and really depressed. For a couple of years I had been asking my gp surgery if I could be type 1 but they kept saying no you're definitely type 2. I was eventually referred to a specialist diabetes clinic where the doctor said that I was LADA. It made me angry with my gp surgery that they didn't listen to me. Anyway I was put on Tresiba for the first week, started off at 8 units, then every couple of days it was increased. A week later I was put on Fiasp. I am now on 24 units of Tresiba and 1 unit per 10g. I also am now on the Freestyle Libre Sensor, which has greatly improved my control. I feel so much better, although since being on insulin my appetite has been enormous! I have put on 3 stone since lockdown!
Whoa, that's such a long time to be diagnosed as T2 when you're LADA!! That is super frustrating your gp wasn't listening to you, I know how you feel. I remember having multiple arguments but at least mine took less than a year to get diagnosed correctly. And being on all that medication when you didn't need to be! That's awesome you've got your insulin sorted now and your control is pretty good. Haha I haven't noticed myself having a bigger appetite but I have gained a few kgs since I started insulin. And lockdown won't help! lol
 
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JMcB

Well-Known Member
Messages
125
Type of diabetes
LADA
Treatment type
Insulin
Oh whoa 3 years is quite a long time with the wrong diagnosis. Good you made the decision to see an endo so you finally got the correct diagnosis! And yeah that's not great timing with covid, but not much you can do about that I guess, do you feel better now that you're on insulin? That's really good low carb helps and means you don't usually need to bolus! That's the positive of LADA, our bodies are still making some insulin so that does come in handy! haha

In reviewing my medical records today I realized it was April 2018 I was diagnosed T2 so only 2 years. Not as bad as 3! I am feeling better now that I’m on insulin. If I could only get the basal dose right. Was humming along now suddenly need less, so trying to sort that. Makes for some long uncomfortable nights. :-(
 
Messages
19
Type of diabetes
LADA
Treatment type
Insulin
In reviewing my medical records today I realized it was April 2018 I was diagnosed T2 so only 2 years. Not as bad as 3! I am feeling better now that I’m on insulin. If I could only get the basal dose right. Was humming along now suddenly need less, so trying to sort that. Makes for some long uncomfortable nights. :-(
Oh well that's good, but still...any time with the wrong diagnosis isn't ideal. Yeah it's definitely and ongoing learning and correcting process! Good luck!!
 

Rose22

Well-Known Member
Messages
282
Type of diabetes
Type 1
Treatment type
Insulin
Do you have a half unit pen for bolus? When you are on small doses, this may be very helpful.
I do not think they are available of pre-filled pens but who wants flimsy throw-away pens when there are sturdier re-usable ones that are kinder to the planet, anyway?
If you don't already have the half unit pens, I highly recommend requesting them.
Oh I didn’t know you could have 0.5 unit pen...I will ask about this! I don’t need much insulin at the moment, roughly 1:20g but my numbers are higher than I’d like as I found down rather than up for fear of hypos.
 
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Rose22

Well-Known Member
Messages
282
Type of diabetes
Type 1
Treatment type
Insulin
Whoa, that's such a long time to be diagnosed as T2 when you're LADA!! That is super frustrating your gp wasn't listening to you, I know how you feel. I remember having multiple arguments but at least mine took less than a year to get diagnosed correctly. And being on all that medication when you didn't need to be! That's awesome you've got your insulin sorted now and your control is pretty good. Haha I haven't noticed myself having a bigger appetite but I have gained a few kgs since I started insulin. And lockdown won't help! lol
Ah I know the frustration of GP who is adamant “you are type 2” I had gestational twice, but had good levels after so niavely thought that was the end of diabetes for me...was then pre diabetic, really out of the blue, but quickly I couldn’t get my levels done, went low carb etc no real help. GP tried various meds and me feeling awful, a year of that and a hba1c going higher each time. I saw a consultant he put me on another med that makes pancreas squeeze out insulin with food whilst waited for test results, and they showed I had antibodies. I was told late onset type 1. My GP didn’t change my records from type 2, so I had to ask them to! Said there’s two consultant letters on the system saying type 1. I felt relief in a way as I’d never felt I was type 2, it didn’t fit at all. Downside is...multiple daily injections. I was put on insulin in March and I’ve been figuring it out since. Like you...if I eat a cake or a couple of sweets (and it’s not to correct a hypo) I will go up to 18-24. (That’s before insulin and now on it) So insulin does help with meals and trying keep a more steady range. The less carbs eaten the less insulin needed. I’m waiting for a call from a dietician? Apparently they will do it over the phone, helps been pretty slim with Covid?! Not sure if others had the same? I can find it really overwhelming sometimes, when see a new bruise, or trying to guess how active will I be later if I dose this now with this meal? But I try take a deep breathe and tell myself it’s ok.
My diabetes nurse said you will probably gain weight at first on insulin, don’t worry.
 

KK123

Well-Known Member
Messages
3,967
Type of diabetes
Type 1
Treatment type
Insulin
Ah I know the frustration of GP who is adamant “you are type 2” I had gestational twice, but had good levels after so niavely thought that was the end of diabetes for me...was then pre diabetic, really out of the blue, but quickly I couldn’t get my levels done, went low carb etc no real help. GP tried various meds and me feeling awful, a year of that and a hba1c going higher each time. I saw a consultant he put me on another med that makes pancreas squeeze out insulin with food whilst waited for test results, and they showed I had antibodies. I was told late onset type 1. My GP didn’t change my records from type 2, so I had to ask them to! Said there’s two consultant letters on the system saying type 1. I felt relief in a way as I’d never felt I was type 2, it didn’t fit at all. Downside is...multiple daily injections. I was put on insulin in March and I’ve been figuring it out since. Like you...if I eat a cake or a couple of sweets (and it’s not to correct a hypo) I will go up to 18-24. (That’s before insulin and now on it) So insulin does help with meals and trying keep a more steady range. The less carbs eaten the less insulin needed. I’m waiting for a call from a dietician? Apparently they will do it over the phone, helps been pretty slim with Covid?! Not sure if others had the same? I can find it really overwhelming sometimes, when see a new bruise, or trying to guess how active will I be later if I dose this now with this meal? But I try take a deep breathe and tell myself it’s ok.
My diabetes nurse said you will probably gain weight at first on insulin, don’t worry.

Hi Rose, obviously you would need to test, test, test but don't be afraid of the thought of hypo's. I was, at the start to the extent that I didn't even go to work for a month because I thought I would drop to the floor at any moment, I rushed to the shop & back out of fear I would fall into Sainsbury's fridge freezer, etc. I laugh about it now (3 years later). I do go lower than 4 sometimes but usually feel it and correct and even when I don't feel it quickly enough I have noticed that when it drops into the 3s it actually goes up a point on its own, meaning my body is still able to react to a low by releasing glucose. I do not rely on this of course because a low can be dangerous and so I do treat it BUT I no longer let it rule my every move and when I calculate my insulin dose I do it to try and keep my levels within range rather than worry about going too low. You will get to a stage where you are confident in how your body reacts and will probably find your body actually works to an extent in slightly adjusting glucose levels especially if you are in the honeymoon period. My experience is that if I take too much insulin my body still releases glucose to combat it and if I don't take enough I am convinced it uses whatever insulin I still produce to level it up. Others are different but this is just to give you more confidence that the chances are you won't drop to the floor immediately the second you drop into the 3s. Obviously your requirements re insulin and the honeymoon period will change at some point but at the start of my diagnosis, the honeymoon period did help me to regulate my levels and to worry less about hypos whilst managing and gaining an understanding of what was going on. x
 
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