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

Streety

Active Member
Messages
44
Type of diabetes
LADA
For some reason, it really bothered me that I know how I got this way, so I've done my research and pondered my past quite a bit.
I'd always eaten properly and was relatively active and was skinny as a kid so my battle with weight made no sense until diagnosis in my 40's as LADA.

I had a suspected appendicitis when I was 15. The pain was on the wrong side though so I was pumped with antibiotics, felt better the next day and sent home. I think this was the virus that triggered things with my pancreas with pain being caused by an inflammation and the antibiotics made things worse. Then I had terrible stress with my mum being diagnosed with cancer not long after and she died when I was 17.

I started putting weight on about a year later and couldn't shift it until I dropped my calories to 1100 and really hit the gym when I was 21. At this stage I was metabolically resistant and my whenever I went back to normal eating after hard dieting the weight would come back on. All this happened through a horrible marriage and I had my first child. A few years later the second child was probably GD as I was very, very large but thought to be too young to be a candidate for GD. When my bub was 4 months old I had my gall-bladder removed as it was packed with large stones and many small ones.

After getting away from the stress of a horrible marriage I lost weight again but only through very low calories and significant exercise. Weight would rise when I stopped that regime. I had a work health review and was diagnosed pre-diabetic but going through divorce, didn't pay too much attention and was told to watch what I ate. Had my third child a few years later and ended up GD, injecting basal and bolus insulin. A year after having bub, weight began to climb and nothing would shift it and that's when I got an initial T2 diagnosis.

I asked for a referral to an endocrinologist at this point (being in Brisbane, Australia). He's very switched on and did GAD and C-peptide and I was diagnosed as LADA about 8 years ago.

Started on Metformin, I lost weight initially with prescription of Phentermine. Metformin didn't really work longer term and had terrible side effects racing to the loo before I went William Shatner-pants and sulphur burps. So I was moved on to Forziga and Jardiance. Without Metformin, the weight came back on so I was prescribed Vyctoza injections when Phentermine didn't work on it's own.

I developed a reaction to Vyctoza with nausea, vomiting, sulphur burps and constipation. The medication made my throat close rather than make my tummy feel full. Next I tried Byetta which made me intensely nauseous. At some point Gliclazide was added.

For the last 12 months my HBA1C went from ok to climbing as I've tried to lose weight and failed with limiting intake and using phentermine. Just as Covid hit, I began daily Lantus injections. Working at home and staring insulin has made me pile on some more weight so now my specialist has prescribed Ozempic.

So far, it's made my tongue tingle and I'm thirsty. I'm just upping the dose though and today had a decent reading (for me) of 8.9 on waking and hunger and cravings seem to be more manageable. I'm hopeful. My aim is to get the weight down so that insulin dose is lower or possibly even not required. Somac is keeping nausea at bay although now I'm getting joint pain so will have to take something for that....
 
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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! :)
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!
Hi, I have enjoyed reading these experiences this morning - its nice knowing there are others with such similar experiences! I suffered a sudden and shocking bereavement 9 years ago and within a few months I was having weird experiences which I now know were exactly like hypos. At the same time I went to the doctors as I was dying of thirst and up and down all night drinking. I was told i was pre-diabetic and the hypo-like events were put down to hot flushes caused by the menopause as i was about 47yrs at the time. Eventually, after about another 6 years I was told I had type 2 diabetes. I decided to reverse it and did the 500cal for 8 weeks diet. My hb1ac came down from 51 to 40 and I was congratulated by my gp and signed off! Within a few months and despite sticking to a low carb diet my thirst was getting worse etc. I went back and insisted on a blood test and was officially type 2 again! At this point the gp commented that I did not present as a typical type 2 diabetic! So I started on Metformin - did nothing, dose doubled....did nothing on to the glicizide......nothing. Finally did the antibody blood test at the end of feb 2020. I got called in the week lockdown began and given two forms of insulin and a crash course in injecting! The insulin seems to have made me gain weight. It has stabilised after putting on 7kg in around 2 months but that was scary! I hate injecting so try to stick to a low carb diet and only do it once a day! The injection seems to sting immediately after it quite often. I was told I still have some of my own insulin but don't know how they know this. The test that is meant to be less than 5 was more than 3000? I try hard to ignore the diabetes as much as possible and get feel very awkward when I have a hypo in front of others! This has happened a few times as even walking seems to trigger big drops in my sugar. I would love a pump but there is no way I can afford one! Does anyone else think a traumatic event possibly triggered their diabetes?
 

Cal M

Member
Messages
19
Type of diabetes
LADA
Treatment type
Insulin
My story echoes quite a few above. I was diagnosed accidentally with a UTI blood test Nov 2016. I was 12stone and fairly fit so started on Metformin immediately. Started a low carb high fat diet, lost 2stone over the next year but bg still highish, started Gliclazide. Still lchf diet HbA1c climbing. Reached 99mmol and weight dropped below safe BMI so had to demand Gp do something. Started on basal tresiba by diabetes nurse specialist at Gp Jan 2019. Still labelled T2 at GP. HbA1c now55. I am on Tresiba 14 units, 4 x metformin+ 2 x Gliclazide. Hoping I don’t have to start bolus insulin, one injection a day is bad enough and I can’t understand carb counting it must make you obsessed with food labels etc.
Cholesterol was also slightly high I believe from 2years of Lchf diet. Reluctantly started statin at lowest dose. Hoping my next HbA1c will be lower but not that optimistic. Cholesterol was coming down before starting statin but still not ideal so will medicate till it is fully down then consider weaning off.
 

Mustaffa

Member
Messages
11
Diagnosed July 31st, HbA1C 124 and BG was 27, they detected glucose in my urine at my hypertension appt.
Checking back they realised they missed my HbA1C of 78 last February.
I work in the hospital and they immediately sent me around to the diabetes clinic an and told with HbA1C changes like that I was Type 1 and immediately started on long acting Lantau insulin 10 units at night, increasing by 1 unit every three days and check my blood glucose before and after every meal and before and after sleep.

What they forgot to tell me was that I would lose my vision for a couple of weeks. After 2 weeks on insulin my eyesight got progressively worse. I attended Morefields Eye hospital A&E. I was told I had cataracts compounded by osmotic pressure changes in my eyes due to the changes in glucose. I was advised to get a cheap pair of specks with the highest magnification I could stand and that my eyesight would get worse before it got better.
I was off work for two months. I had to get a hand lens with lights and a drop down visor when I was at it’s worst. All back to normal now 14 weeks later.
During this time I invested in an iPhone and got a free Contour Next One blood glucose monitor from their website. You have to persuade you GP to switch to ContourNext test strips.
The contour app is not that good but it does link to the AppleHealth app. I then found the OneDrop app which is great and free, you don’t have to pay the subscription.
The OneDrop app can get the data from the AppleHealth app, you can also enter your Carbs and meds and scan in the barcodes of your food.
The apps have been brilliant, HbA1C at the end of Nov was 37 and my blood glucose is averaging 5.7.
This is just the start of my journey as my islet cells die off and I become more dependent on insulin I can no see the trends on my iPhone. Been on 36 units insulin at night for the last few weeks.

Forgot to mention, diagnosed a month before my 60th birthday, so very late onset.
 
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G0ldengirl68

Well-Known Member
Messages
343
Type of diabetes
Type 2
Treatment type
Diet only
Dislikes
Icy, cold winds where I live, when I want to be outside ;)
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! :)
My heart really went out to you @Diabetic Vegan as I am very frustrated with the lack of competent medical care in my area. I was referred to a specialist and they were 400 miles away. I live on "The Lost Coast" area of California and we are truly at a loss up here, for a lot of things, especially medical and dental.

Anyway, I had a friend on my fitness site where I keep a diary of what I eat etc., and she mentioned that she didn't see me as a typical Type 2 so she wondered if I might have been wrongly diagnosed. Nothing I can do for now except try the Metformin, going on 2 weeks now, and drop some/a lot of carbs, and test with the meter. I pray for the best for both of us, Denise
 

DCop

Newbie
Messages
2
I was initially diagnosed T2 two years ago (Jan 2019). After complaining about excessive weight loss- I went from 10st 6lb to 8st 5lb in five months- I finally got tested and was GAD positive. GP referred me to endo at local hospital who confirmed LADA- my GP hadn’t heard of it and my diabetes nurse was adamant that there were only two types of diabetes. One of my medicines (dapagliflozin) was stopped immediately as they thought it was responsible for the weight loss (although that turns out to be due to hyperthyroidism which my GP also managed to miss).

In honeymoon period and metformin is still working for me, although I suspect I might be on insulin soon as my blood sugars are slowly rising.
 

KK123

Well-Known Member
Messages
3,967
Type of diabetes
Type 1
Treatment type
Insulin
Anyway, I had a friend on my fitness site where I keep a diary of what I eat etc., and she mentioned that she didn't see me as a typical Type 2 so she wondered if I might have been wrongly diagnosed

Hi G0ldengirl, did your friend say why? x
 
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G0ldengirl68

Well-Known Member
Messages
343
Type of diabetes
Type 2
Treatment type
Diet only
Dislikes
Icy, cold winds where I live, when I want to be outside ;)
Hi G0ldengirl, did your friend say why? x
I think so @KK123 , let me look at the post and I'll clip it for you:
LADA.JPG
 

KK123

Well-Known Member
Messages
3,967
Type of diabetes
Type 1
Treatment type
Insulin
I think so @KK123 , let me look at the post and I'll clip it for you: View attachment 47524

Thanks so much for replying. The Professionals do tend to diagnose by appearance and this so called 'lifestyle' concept, but anyone (fat or thin, an exercise freak or a couch potato) could still be just about any type of course. They do like to generalise. Your friend is right in that many people DO get misdiagnosed so although it can be hard persuading GPs for the tests, it is definitely worth thinking about. x
 

G0ldengirl68

Well-Known Member
Messages
343
Type of diabetes
Type 2
Treatment type
Diet only
Dislikes
Icy, cold winds where I live, when I want to be outside ;)
Thanks so much for replying. The Professionals do tend to diagnose by appearance and this so called 'lifestyle' concept, but anyone (fat or thin, an exercise freak or a couch potato) could still be just about any type of course. They do like to generalise. Your friend is right in that many people DO get misdiagnosed so although it can be hard persuading GPs for the tests, it is definitely worth thinking about. x
I agree 100% @KK123 about the appearance and generalising. My grandmother for sure had diabetes but all I ever heard was "sugar diabetes" and I never knew her to test herself, or definitely not injections. She was careful and I remember back then, she had saccharin. I believe mine may have started some time ago, maybe years, but right now, I'm responding well to the dietary changes. I am now trying Extended Release Metformin and seem to feel almost normal this a.m. More will be revealed hey ;)