New T1D Diagnosis, very far from home, with a very rough start

[SallyLinsdell]

Hiii guys,

My name is Sally, 34, originally from the UK however have been living in Bali the last 9 years (which sounds bliss, until you have to deal with Indonesian healthcare)

2 months ago I lost my vision quite dramatically, after recovering from 5 days of dengue fever. I shrugged it off as a lingering side effect of the virus, before I started experience complete depersonalization/derealisation a few days afterwards which was quite scary. Then came the yeast infection, and the incurable thirst. A quick symptom google led me to diabetes, and I went to take a blood glucose test at the nearest health clinic. They sent me straight to the emergency room, I was at 22mmol with a HbA1c of 9.7. They issued me insulin at the hospital, which immediately put me back in my body and helped my vision and I met the 'specialist' the next morning. This 'specialist' without checking any lab results from the day before, or even taking a blood glucose reading from me issued me to start taking 25unit of Lantus without any education, insights or dietary guides and instructed me to go and buy myself a blood glucose monitor and come back in 2 weeks. That night, I took my insulin as instructed and subsequently woke up in a hypo of 2.8. The following weeks I continue this dose naively however as instructed, repeatedly waking up in the 2-3mmol range and even one day nearly falling unconscious at 2mmol after swimming.

At this point I knew someone was wrong. From my own research, I learnt as a T1D still very much in my honeymoon phase, at 57kg, eating LCHF diet, 25 units of Lantus was an incredibly dangerous move. I now don't feel safe nor that I can trust the medical care system here.

Coming back to the UK is a very expensive endeavour, and 24hour flight away so my next best option was to fly to Australia to seek Medicare under the reciprocal health agreement as UK citizen last month. I've since found an incredible Endocrinologist there, and was able to get my official T1D diagnosis and be issued the correct care and returned back to bali with a suitcase full of CGMs, Novorapid, Toujeo and Metformin.

At the moment I am on 1000mg a day of Metformin, and no injected insulin however i'm finding myself regularly falling into hypos (sometimes two times a day). Atm, my diet is usually 15g of carbs (wholegrain bread slice) with my breakfast, a low carb salad lunch and around 20-30g of carbs in the evening (sweet potato, quinoa, wholegrain bread) without any insulin. I walk my dogs around 1 mile every morning, and swim around 1/2mile every other day. I'm correcting hypos with a granola bar (24g carbs, 7g sugar) which usually can bring me back up (however on a few occasions I have also had to gulp some orange juice, and demolish some haribo on top) however I then plummet back down again even lower after. How can I fix this?

The plan is to visit Australia every 3 months to check up until I find a longer term solution (as Allianz and AXA both rejected me for health insurance, and 1 insulin pen is around £25, and CGMs £75 here in Bali). I don't have an immediate medical care team here, and no T1D friends on the island so hoping to connect with the community here for some insights and advice!

Thank you!

 

[Taighnamona]

Hi Sally, I’m T2 on insulin and self fund a CGM and can’t begin to imagine how terrifying all that might have been for you. Sending hugs. I’m sure others will be along shortly to give advice and point to all the resources on this site. Best wishes going forward.

 

[SallyLinsdell]

Hi Sally, I’m T2 on insulin and self fund a CGM and can’t begin to imagine how terrifying all that might have been for you. Sending hugs. I’m sure others will be along shortly to give advice and point to all the resources on this site. Best wishes going forward.

Thank you so much for the hugs! I appreciate the response 🙂 It’s really has been a rollercoaster ride, but it can only go up from here! (fingers crossed)

 

[Lucyr]

I’d suggest reading up about reactive hypoglycaemia and seeing if that fits with fast acting carbs bringing on hypos. I’d question whether you’re really T1 if you don’t need any insulin and have reactive hypoglycaemia though, could be T2 instead, but would have to either have tests or see how it goes over time to determine type.

 

[Saoirse]

Hi. Welcome, and sorry you’ve had quite a rough intro to the diabetic life.

A couple of questions: do you want to eat low carb or are you attempting this as a way of managing diabetes? If the latter, there is no reason a T1 cannot eat a normal amount of carbs, most of us do.

Non diabetics do dip below 4, but as you are not taking insulin, is highly unlikely hypo is being caused by metformin. It may be reactive hypoglycaemia, unless you are compressing you cgm somehow?

Also has your endo ordered c peptide or GAD tests?

 

[SallyLinsdell]

I’d suggest reading up about reactive hypoglycaemia and seeing if that fits with fast acting carbs bringing on hypos. I’d question whether you’re really T1 if you don’t need any insulin and have reactive hypoglycaemia though, could be T2 instead, but would have to either have tests or see how it goes over time to determine type.

Thanks so much for the suggestion, I will! My antiGAD and ZnT8 tests both came back positive when I received my diagnosis.

 

[Proud to be erratic]

Hello @SallyLinsdell,
Welcome to the Forum and huge sympathies with your rocky introduction to the Diabetes malarkey!

You've found the right place here, there is a friendly and reassuring background to how the Forum is moderated and how members help. Masses of lived experience and a strong sense of "ask questions"; no question is stupid.

With time, alongside trial and learning, some of this D management gets easier and you find yourself doing things successfully on autopilot.

Hope it all makes more sense for you quickly.

 

[everydayupsanddowns]

Goodness @SallyLinsdell

What a difficult start you have had, and it sounds like it has been made all the more tricky by your uncertainty over the healthcare you have received.

There are a few unusual aspects to your situation, and the treatment you are receiving. Diabetes can be tricky to diagnose, so it’s not all that unusual to have to play a bit of a waiting game.

Some people are diagnosed with very high glucose levels initially, either because of an illness, injury, or a treatment like steroids. this can mean they need insulin initially, but doesn’t necessarily indicate T1.

Metformin is not commonly prescribed in T1. It increases insulin sensitivity, and supresses glucose output from the liver. You aren’t likely to have insulin resistance from what you’ve said.

The honeymoon phase (where the last beta cells get a bit of a second wind) can be difficult for some people. If your autoimmune attack continues, your own insulin supply will reduce.

Low carb is not necessary in T1, and can make management harder. the insulins you have been prescribed are ‘expecting’ over 130g of carbs per day, and their timing / insulin action is designed around that, rather than converting fats/proteins to glucose.

This free online course, on matching insulin doses to meals, might help fill in some of the blanks for you?
www.bertieonline.org.uk

Hope things get easier for you soon.

 

[SallyLinsdell]

Hi. Welcome, and sorry you’ve had quite a rough intro to the diabetic life.

A couple of questions: do you want to eat low carb or are you attempting this as a way of managing diabetes? If the latter, there is no reason a T1 cannot eat a normal amount of carbs, most of us do.

Non diabetics do dip below 4, but as you are not taking insulin, is highly unlikely hypo is being caused by metformin. It may be reactive hypoglycaemia, unless you are compressing you cgm somehow?

Also has your endo ordered c peptide or GAD tests?

Thank you for your reply!! Yeah, c-peptide came in at the bottom of the range, and GAD and ZnT8 both came back positive.

I started eating low carb mostly to avoid any spikes in the beginning when I waiting for a diagnosis, but have been encouraged by the doctor to introduce more. Finding myself in abit of a mental battle that eating big amounts of carbs equals injecting insulin which equals a crazy hypo after my first month of experiences on 25units Lantus. A mental trauma I know I will need to get over

I will read into reactive hypoglycemia. Thanks again for the suggestion. I have double checked lows with my blood glucose monitor, and while they may be off it’s still generally low so have ruled out compression x

 

[SallyLinsdell]

Goodness @SallyLinsdell

What a difficult start you have had, and it sounds like it has been made all the more tricky by your uncertainty over the healthcare you have received.

There are a few unusual aspects to your situation, and the treatment you are receiving. Diabetes can be tricky to diagnose, so it’s not all that unusual to have to play a bit of a waiting game.

Some people are diagnosed with very high glucose levels initially, either because of an illness, injury, or a treatment like steroids. this can mean they need insulin initially, but doesn’t necessarily indicate T1.

Metformin is not commonly prescribed in T1. It increases insulin sensitivity, and supresses glucose output from the liver. You aren’t likely to have insulin resistance from what you’ve said.

The honeymoon phase (where the last beta cells get a bit of a second wind) can be difficult for some people. If your autoimmune attack continues, your own insulin supply will reduce.

Low carb is not necessary in T1, and can make management harder. the insulins you have been prescribed are ‘expecting’ over 130g of carbs per day, and their timing / insulin action is designed around that, rather than converting fats/proteins to glucose.

This free online course, on matching insulin doses to meals, might help fill in some of the blanks for you?
www.bertieonline.org.uk

Hope things get easier for you soon.

Thank you so much for the response!! Appreciate your insights, I will check out Bertie for sure!

My c-peptide test came in a the very bottom of the range, and GAD and ZnT8 both positive however it does seem like my pancreas is still giving out quite abit of juice!

I’m wondering if the metformin is increasing my insulin sensitivity, and that the reintroduction of carbohydrates (albeit not enough) is causing reactive hypoglycemia and what’s sending my system out of wack. But I’m not sure.

 

[Lucyr]

Yeah, c-peptide came in at the bottom of the range, and GAD and ZnT8 both came back positive.

Have you chosen to stop all insulin or have your medical team advised you to stop it completely? If your cpeptide is at the bottom end of normal then it’s risky not taking any, as whilst you’re producing enough insulin now it could drop from the autoimmune attack.

 

[everydayupsanddowns]

My c-peptide test came in a the very bottom of the range, and GAD and ZnT8 both positive however it does seem like my pancreas is still giving out quite abit of juice!

Was your cPep measured ‘fasting’ or ‘stimulated’?

What’s your understanding of cPeptide and what that shows?

 

[SallyLinsdell]

Have you chosen to stop all insulin or have your medical team advised you to stop it completely? If your cpeptide is at the bottom end of normal then it’s risky not taking any, as whilst you’re producing enough insulin now it could drop from the autoimmune attack.

That’s a really great insight, thank you. The endo in Australia had suggested initially to bolus 2units before a carby meal which I did on two occasions, however I dropped into a hypo after. Maybe my own remaining insulin has kicked in and I’ve almost double dosed myself. I’m not sure.

I can admit and say I have definitely developed abit of a trauma with injecting equaling hypos after my first month on a heavy over dose of insulin…it’s a mental battle I know I need to get over instead of just avoiding big carbs.

 

[Inka]

Thank you so much for the response!! Appreciate your insights, I will check out Bertie for sure!

My c-peptide test came in a the very bottom of the range, and GAD and ZnT8 both positive however it does seem like my pancreas is still giving out quite abit of juice!

I’m wondering if the metformin is increasing my insulin sensitivity, and that the reintroduction of carbohydrates (albeit not enough) is causing reactive hypoglycemia and what’s sending my system out of wack. But I’m not sure.

The 25 units of Lantus sounds mad, but don’t let that put you off correct amounts of the right insulins. The difference will be night and day. It’s very possible you’re in the honeymoon phase and that the Lantus gave your remaining beta cells a rest so that they’re able to produce tiny amounts of insulin.

I’m confused why you’ve been given Metformin. There was a thread on here a while ago where a Type 1 was given that and it caused issues. You don’t have insulin resistance and you’re not Type 2. If it were me, i’d stop that. It’s thought that early introduction of insulin helps preserve the remaining beta cells for longer, so I’d eat normally and take the appropriate insulin. There’s no need for a low carb diet when you’re Type 1, and, in fact, it can actually make control harder.

 

[SallyLinsdell]

Was your cPep measured ‘fasting’ or ‘stimulated’?

What’s your understanding of cPeptide and what that shows?

It was fasting, and the result was 0.4nmol/L

My very basic understanding is that I am still producing a little insulin, and enough to cover small carby meals like eggs on wholegrain toast, or a quinoa salad without dosing (with the anticipation this will one day end)

Anymore insights are greatly appreciated!

 

[Inka]

That’s a really great insight, thank you. The endo in Australia had suggested initially to bolus 2units before a carby meal which I did on two occasions, however I dropped into a hypo after. Maybe my own remaining insulin has kicked in and I’ve almost double dosed myself. I’m not sure.

I can admit and say I have definitely developed abit of a trauma with injecting equaling hypos after my first month on a heavy over dose of insulin…it’s a mental battle I know I need to get over instead of just avoiding big carbs.

That’s understandable but it wasn’t the insulin’s fault. You were prescribed too much. I think you should start on tiny doses to build up your confidence. You’d also benefit from some Type 1 learning when you feel up to it. There’s loads online, and it really helps.

It’s likely the 2 units was too much for your meagre diet. It’s really important to get the ratio of insulin to carbs right. It might be that you only needed 1 unit for that meal, or even half a unit (if you don’t have half unit pens that would be something to pursue). Measuring your carbs is important too, and the bedrock of Type 1.

 

[SallyLinsdell]

The 25 units of Lantus sounds mad, but don’t let that put you off correct amounts of the right insulins. The difference will be night and day. It’s very possible you’re in the honeymoon phase and that the Lantus gave your remaining beta cells a rest so that they’re able to produce tiny amounts of insulin.

I’m confused why you’ve been given Metformin. There was a thread on here a while ago where a Type 1 was given that and it caused issues. You don’t have insulin resistance and you’re not Type 2. If it were me, i’d stop that. It’s thought that early introduction of insulin helps preserve the remaining beta cells for longer, so I’d eat normally and take the appropriate insulin. There’s no need for a low carb diet when you’re Type 1, and, in fact, it can actually make control harder.

Yeah, I think beside the constant hypos, the biggest challenge for me atm is disconnecting the mental association that injecting leads to more deeper hypos after my experiences with Lantus. Appreciate your assurance! I will start the Bertie course and get to grips.

I’ll also have a search for that thread you mention, and start today by at least lowering that metformin dose to 500mg and monitor any improvements.

 

[Inka]

This book is also good and is available as a Kindle book. Ignore the title. It’s useful for anyone with Type 1, including all adults:

Type 1

And also this book below, which is cheaper, but is American so you might have to convert the blood sugar measurements (not sure what they use in Bali). I like the chatty style, and also the title describes perfectly what we need to do:

Think Like A Pancreas

.

 

[SallyLinsdell]

This book is also good and is available as a Kindle book. Ignore the title. It’s useful for anyone with Type 1, including all adults:

Type 1

And also this book below, which is cheaper, but is American so you might have to convert the blood sugar measurements (not sure what they use in Bali). I like the chatty style, and also the title describes perfectly what we need to do:

Think Like A Pancreas

.

Amazing, thank you so much!!

 

[rebrascora]

Hi and welcome from me too.

So sorry to hear you have had such a traumatic time with Dengue fever and then a Type 1 diabetes diagnosis. It must have been scary particularly losing your sight and then that large Lantus dose for someone your size. You are lucky it didn't kill you! How is your sight now? Have you had any retinal screening as that is important when you are diabetic.

Can you just clarify..... Are you taking the Toujeo and if so when and how much?

It may be that those large Lantus doses have taken the strain off your remaining insulin producing beta cells and they are now feeling refreshed and over enthusiastic. I would not put too much store on Libre showing hypos. You say that you double checked them with a finger prick and they were low, but how low? Libre has a tendency to over egg highs and lows, particularly if you are rising or falling fast and for many of us it reads lower than a finger prick at low levels and higher at high levels. You sound like you are pretty fit and a healthy weight so I wonder if your own insulin is bringing you down to normal levels but you are over reacting to seeing your levels dropping which is totally understandable considering the experience you had with that large dose of Lantus and intervening with a hypo treatment that you perhaps don't really need, pushing your levels up and triggering your own insulin to bring you back down again.
I think it is important to mention that a hypo treatment should be 15g of fast acting glucose (not a granola bar) but 4-5 glucose/dextrose tablets or 3 jelly babies (not sure you can get those in Bali) or a small carton of orange juice. If you are using sweets then it needs to be something which doesn't contain fat as that slows the release of glucose and don't use fruit as the fibre slows it down. The protocol is to test with a finger prick if Libre/CGM says you are hypo to confirm, (unless you feel obviously hypo), then treat with your 15g fast acting carbs and wait 15 mins and then check again with a finger prick. Libre will invariably show your levels continuing to drop 15 mins after treatment because of the algorithm it used to convert interstitial fluid glucose to blood glucose, so ignore the Libre at this point and rely on your BG meter. If it shows you above 4 then you can consider having a few slower acting carbs like a digestive biscuit to stabilize things but if you are not on insulin at all then you will not need that. The key thing is not to let Libre panic you into treating a hypo that isn't actually hypo or over treating a genuine hypo as this can trigger the rollercoaster you are seeing in that graph, particularly if you have some endogenous insulin production. I can totally understand you panicking after the experience you have had, but you have to learn to be quite disciplined with treating hypos and be a little sceptical of Libre. For me it usually reads about 1mmol lower than BG so a 3.4 on Libre is usually about 4.4 which is a perfectly normal number for BG if you are not taking insulin but a bit close to the bone if you are on insulin, so if I get a finger prick of 4.4 I might have 1 jelly baby which is 5g carbs which should lift my levels about 1.5mmols. It is generally suggested when you first start on insulin that 10g carbs will raise your levels by about 3mmols and 1 unit of fast acting insulin will drop you by 3mmols. These are just guidelines and there will be variation from one person to another and the more slim and fit you are, usually the more sensitive to insulin you will be.

Anyway, this thread has probably moved on quite a bit whilst I have been typing but hope some of my thoughts are helpful. Personally I too would ditch the Metformin, particularly as you are slim and fit and having these hypos. It has quite a long half life so will take days or even over a week to be fully out of your system.