New LADA diagnosis

[CathyFP]

Hi I was diagnosed with Type 2 two years ago but have recently learned that I have LADA Type 1. All my medication has been stopped (Metformin and Glicazide) and I have been moved onto two types of Insulin Tresiba and Novorapid. I would love to communicate with others who have had a similar experience. I’m only a week into taking Insulin but can already see my glucose levels dropping which is a huge relief. However I have not seen a diabetic nurse and have had to work out how to do injections on my own. I feel very unsupported by my GP practice who struggled to prescribe what I need.

 

[Inka]

Welcome @CathyFP 🙂 There are quite a few here who developed Type 1/LADA later in adulthood. @rebrascora and @Robin are two. It’s not good that you weren’t shown how to do injections. There’s some info and a video here:

Injecting insulin

You can inject insulin using an insulin pen and needle or some people use insulin vials and syringes instead of a pen. Or insulin can be released using a small electronic insulin pump which you attach to your body. If you’re an adult and need to inject insulin – or help a loved one inject...

www.diabetes.org.uk

.

 

[Inka]

There are a couple of books often recommended for Type 1s here:

Think Like a Pancreas’ by Gary Scheiner.

And Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas.

Both are very helpful, as is this forum.

 

[CathyFP]

As my diagnosis has changed from Type 2 to Type 1 how can I change my profile on the learning zone to see appropriate information?

 

[Inka]

As my diagnosis has changed from Type 2 to Type 1 how can I change my profile on the learning zone to see appropriate information?

I’m not sure @CathyFP so I’ll tag @everydayupsanddowns To change your type on your avatar here, click your name at the top right of this page, then click Account Details and scroll down.

 

[everydayupsanddowns]

I’ll check to see how those preferences are set @CathyFP, but my first guess would be that it’s a cookie stored by your browser (oh the irony!).

Your web browser may give you the option to view and delete cookies set by specific subdomains (ie just the learning zone) or for the entire diabetes.org.uk domain (which would mean you’d have to log back-in to the forum).

I’ve updated your forum user account to reflect your LADA diagnosis 🙂

 

[Lucyr]

Hi I was diagnosed with Type 2 two years ago but have recently learned that I have LADA Type 1. All my medication has been stopped (Metformin and Glicazide) and I have been moved onto two types of Insulin Tresiba and Novorapid. I would love to communicate with others who have had a similar experience. I’m only a week into taking Insulin but can already see my glucose levels dropping which is a huge relief. However I have not seen a diabetic nurse and have had to work out how to do injections on my own. I feel very unsupported by my GP practice who struggled to prescribe what I need.

Glad to hear you now have the right diagnosis, but who provided that diagnosis? It’s usually only found by tests done by a specialist diabetes team at the hospital. Did the diabetes team not start you on the insulin rather than expecting your GP to do it?

 

[Tdm]

Yes, i would now expect you to be dealt with by a specialist team, not your gp...though lately they hsve been rather busy.
Do you have a cgm?
I too started on metformin and glycaside, though that was just for a couple of weeks until the tests for type 1 came through...insulin is defjnitly a more powerful tool for blood sugar management

 

[everydayupsanddowns]

I’ve had a quick look at the Learning Zone, and log-in details do seem to be handled by cookies, however deleting those would only log you out of your account.

I’ll ask the Learning Zone team if they have access to update someone’s account to change the diabetes type.

The other option might simply be to delete your account and create a fresh one?

 

[rebrascora]

Hi and welcome from me too.

Yes, I was one of the many here initially thought to be Type 2 but after just 5 weeks of Metformin and Gliclazide and a very low carb diet, my HbA1c went up instead of down and I was started on Insulin and subsequently tested positive for Type 1 a couple of months later. Five years down the line now and it's just my new normal way of life.

Really sorry to read how unsupported you are. A DSN attended my GP surgery and together with the practice nurse in charge of diabetes management, started me on insulin and showed me how to inject. I think the first few weeks, the practice nurse was in regular contact to see how I was getting on and adjust doses until I got an appointment with the consultant. I then had an appointment with the diabetes dietician, who was very anti low carb, so lovely as she was, I didn't find her advice overly helpful and I gradually learned to find my own way with my insulin. I got a place on a DAFNE (Dose Adjustment For Normal Eating) Course 8 months after diagnosis which boosted my confidence quite a bit, particularly in adjusting my basal doses, but by far the mainstay of my knowledge and confidence and support has been this forum and it's wonderful members, so I would encourage you to spend some time here reading and asking questions as it really is a world class resource.

Sadly many of the diabetes clinics are now significantly overwhelmed with an increasing workload and decreasing staff/experience, so appointments take longer to get and you have to keep pushing to get the help you need. I would hope that you have been referred to such a clinic, but it sounds like you may not have had an appointment yet. Some clinics have a helpline where if you ring the hospital switchboard and ask for the diabetes helpline, they will put you through, but it is usually an answering service where you leave your details and someone gets back to you in a few days. It might be worth seeing if your local clinic have such a helpline and contact it to ask for some support, but if you have any particular concerns or questions, members of the forum here will be more than happy to answer them and you will usually get replies within a few hours rather than days with the helpline, not that I am saying this forum can replace the clinics, but there is a huge wealth of practical experience here to tap into, some of which is superior to that offered by the clinic in my humble opinion.

 

[CathyFP]

Glad to hear you now have the right diagnosis, but who provided that diagnosis? It’s usually only found by tests done by a specialist diabetes team at the hospital. Did the diabetes team not start you on the insulin rather than expecting your GP to do it

Glad to hear you now have the right diagnosis, but who provided that diagnosis? It’s usually only found by tests done by a specialist diabetes team at the hospital. Did the diabetes team not start you on the insulin rather than expecting your GP to do it?

 

[CathyFP]

The diagnosis came from a consultant endocrinologist who I was very lucky to be able to see on the health insurance that I get from my work. He did an antibody test that my GP declined to do. She just wanted to give me yet more Metformin. The consultant started me on Insulin and I have now been referred to an NHS diabetes clinic which the Consultant leads. So it’s kind of ‘alls well that ends well’ but only because I was lucky and proactive.

 

[CathyFP]

Hi and welcome from me too.

Yes, I was one of the many here initially thought to be Type 2 but after just 5 weeks of Metformin and Gliclazide and a very low carb diet, my HbA1c went up instead of down and I was started on Insulin and subsequently tested positive for Type 1 a couple of months later. Five years down the line now and it's just my new normal way of life.

Really sorry to read how unsupported you are. A DSN attended my GP surgery and together with the practice nurse in charge of diabetes management, started me on insulin and showed me how to inject. I think the first few weeks, the practice nurse was in regular contact to see how I was getting on and adjust doses until I got an appointment with the consultant. I then had an appointment with the diabetes dietician, who was very anti low carb, so lovely as she was, I didn't find her advice overly helpful and I gradually learned to find my own way with my insulin. I got a place on a DAFNE (Dose Adjustment For Normal Eating) Course 8 months after diagnosis which boosted my confidence quite a bit, particularly in adjusting my basal doses, but by far the mainstay of my knowledge and confidence and support has been this forum and it's wonderful members, so I would encourage you to spend some time here reading and asking questions as it really is a world class resource.

Sadly many of the diabetes clinics are now significantly overwhelmed with an increasing workload and decreasing staff/experience, so appointments take longer to get and you have to keep pushing to get the help you need. I would hope that you have been referred to such a clinic, but it sounds like you may not have had an appointment yet. Some clinics have a helpline where if you ring the hospital switchboard and ask for the diabetes helpline, they will put you through, but it is usually an answering service where you leave your details and someone gets back to you in a few days. It might be worth seeing if your local clinic have such a helpline and contact it to ask for some support, but if you have any particular concerns or questions, members of the forum here will be more than happy to answer them and you will usually get replies within a few hours rather than days with the helpline, not that I am saying this forum can replace the clinics, but there is a huge wealth of practical experience here to tap into, some of which is superior to that offered by the clinic in my humble opinion.

Thanks Barbara for your helpful reply. As it may be several moths before I get a clinic appointment due to ‘capacity issues’ I will investigate DAFNE course and seeing a diabetic dietician.

 

[rebrascora]

You must be so relieved to get a correct diagnosis and treatment. Sadly we get quite a few people joining the forum who have been diagnosed Type 2 but from their circumstances it becomes obvious to the more experienced members of the forum that they may well be a misdiagnosed Type 1/LADA and it can be very difficult for those people to get a re-diagnosis..... I guess no doctor wants to admit they were wrong or that someone has done their own research on the internet and believes they are misdiagnosed..... and you can understand a doctor who has spent many years studying for qualifications, being confronted by a patient who thinks they know better 🙄.... let alone that the patient has been told by keyboard warriors that they are Type 1 and need insulin.... I did that with my GP and it didn't go down well I can tell you.😱 I was however started on insulin the following week, but I believe the decision was made by a consultant at the hospital after my nurse had a case conference with him.
I am so pleased your work health insurance enabled you to achieve that. It is a sad state of affaires with regard to the NHS and rather more common than we would like it to be and we do have other members here have gone private to try to resolve the issue.

 

[Mpo1957]

Hi I was diagnosed with Type 2 two years ago but have recently learned that I have LADA Type 1. All my medication has been stopped (Metformin and Glicazide) and I have been moved onto two types of Insulin Tresiba and Novorapid. I would love to communicate with others who have had a similar experience. I’m only a week into taking Insulin but can already see my glucose levels dropping which is a huge relief. However I have not seen a diabetic nurse and have had to work out how to do injections on my own. I feel very unsupported by my GP practice who struggled to prescribe what I need.

I am diagnosed type two. We are doing testing now. See if I am LADA. I am deathly afraid of going on insulin. I have been following Dr. Jason Fasting and low.Carb. He says that insulin will make us fat. And I just lost 90 pounds. Did you find that you gained weight on insulin?

 

[rebrascora]

I am diagnosed type two. We are doing testing now. See if I am LADA. I am deathly afraid of going on insulin. I have been following Dr. Jason Fasting and low.Carb. He says that insulin will make us fat. And I just lost 90 pounds. Did you find that you gained weight on insulin?

Are you "deathly afraid" of food too?
Insulin only allows you to utilize the glucose from your food, just like it does for people who have a functioning pancreas that produces it's own insulin. It is what you eat that makes you gain weight, so if you eat too much and don't exercise enough then yes you will gain weight but it isn't the insulin which causes the weight gain, it is the food you eat and/or insufficient activity. So if you start putting on too much weight once you start on insuin, then you need to cut back on what you eat and most likely your insulin doses, or exercise more or both.

 

[helli]

I am diagnosed type two. We are doing testing now. See if I am LADA. I am deathly afraid of going on insulin. I have been following Dr. Jason Fasting and low.Carb. He says that insulin will make us fat. And I just lost 90 pounds. Did you find that you gained weight on insulin?

I wish people would stop perpetuating this myth that insulin causes weight gain.
Every body, regardless of whether they have diabetes or not uses insulin and not every body gains weight.
To my understanding, excess insulin, a consequence of insulin resistance, may cause weight gain.
LADA is a variant of Type 1 which is an autoimmune condition, not a metabolic condition.

A common symptom of untreated Type 1 diabetes is weight loss as we do not have the insulin to use the food we eat. Once we start injecting insulin, our body can use that food so it is usual to regain the weight we lost. However, once stability has been met, injecting insulin does NOT cause weight gain.
I have had Type 1 diabetes for 20 years and been injecting insulin for all those years. Unlike many of my non-diabetic friends, I have gained NO weight over that time.

I am passionate about dispelling the myth about weight gain because it is very very dangerous, especially when the most common age of diagnosis is young adult. Just read about diabulimia and you will realise it can be fatal.

 

[everydayupsanddowns]

Hope you get some clarity about your diabetes type soon @Mpohja1457

It’s quite common to be cautious about starting on insulin, but the needles involved are tiny, and I’m another who has been injecting insulin for over 30 years, and haven’t gained any weight because of the insulin.

The only times my weight has gone up have been when I was eating more 🙂

 

[Tdm]

Since i've been on insulin, I've had more problems keeping weight on than putting it on, tbh

 

[CathyFP]

I’ll check to see how those preferences are set @CathyFP, but my first guess would be that it’s a cookie stored by your browser (oh the irony!).

Your web browser may give you the option to view and delete cookies set by specific subdomains (ie just the learning zone) or for the entire diabetes.org.uk domain (which would mean you’d have to log back-in to the forum).

I’ve updated your forum user account to reflect your LADA diagnosis 🙂

Thankyou