New type 1 on honeymoon!

[TheArchitect]

I’m new to the forum but was diagnosed type 1 just before Easter weekend, so I’m a couple of months in and ‘honeymooning’ so thought I’d say hello!
I was started off on a 12 unit dose of Lantus once a day, and have reduced down to 7 units as my pancreas is having another try. I’m interested to hear what experiences others have had with the ‘honeymoon’. I’m told it could last days or months. Will I simply find one day my levels shoot up and that’s it, good bye honeymoon, or is it sometimes a more gradual thing?
My HbA1C at diagnosis was 139, had my first consultant check up today (since diagnosis) and my HbA1C is now 55 which is a relief.
Got to say how great all the Consultants, DSNs and Dietitian have been. Could not have been more supportive.

 

[Ljc]

@TheArchitect welcome to the forum. It is good to hear that your team is very supportive.
Sorry I can’t help re the honeymoon period as I have T2 but from what I have read on here just like most things to do with Diabetes, it’s very individual.
Feel free to ask any questions you have about diabetes , we’ll do our best to help.

 

[Northerner]

I’m new to the forum but was diagnosed type 1 just before Easter weekend, so I’m a couple of months in and ‘honeymooning’ so thought I’d say hello!
I was started off on a 12 unit dose of Lantus once a day, and have reduced down to 7 units as my pancreas is having another try. I’m interested to hear what experiences others have had with the ‘honeymoon’. I’m told it could last days or months. Will I simply find one day my levels shoot up and that’s it, good bye honeymoon, or is it sometimes a more gradual thing?
My HbA1C at diagnosis was 139, had my first consultant check up today (since diagnosis) and my HbA1C is now 55 which is a relief.
Got to say how great all the Consultants, DSNs and Dietitian have been. Could not have been more supportive.

Hi TheArchitect, welcome to the forum 🙂 Unfortunately the honeymoon period can be very unpredictable, both in duration and effect. For some it may last a few weeks, for others as long as a couple of years 😱 Many people are actually pleased when things settle down so that insulin requirements become more predictable and stable. It's likely that the honeymoon ending will be gradual rather than sudden. The component you will probably need to pay closest attention to is the lantus/basal insulin, as unless this is set correctly it will be very difficult to determine mealtime doses.

My own experiences are not really representative - I went from 20 units of lantus and 45 units of novorapid a day to zero lantus and around 20 units of novorapid a day, over a period of 4 years! 😱 It's more likely you will settle on low-ish doses of both your insulins.

It sounds like your team are very much on the ball though, so take your guidance from them 🙂

 

[Spireite72]

Welcome to the forum @TheArchitect

 

[New-journey]

Welcome to the forum and brilliant you have such a supportive team and you are doing so well.
I saw a new consultant who thought I was still in honeymoon period after two and half years as my insulin needs were at the low end. Who knows!
Well done for getting your HbA1c so much lower.

 

[Jessica Brown]

Hi and welcome - I'm a newbie too! I'm 24 and was diagnosed with T1 around 2 months ago, and I'm still in the honeymoon phase (I ordered a pizza the other day and got away with it!). Currently on 8 units of Levemir twice daily 12hrs apart and no short-acting insulin at all, but in some ways I'm looking forward to starting that as I have to be very careful about what I eat/drink at the moment.

My levels are pretty unpredictable, but fairly stable (nothing above 8.5 or below 3.9 mmol/L yet), so not knowing what will happen with food is quite frustrating as is not knowing when this honeymoon period will end. Keeping testing in the meantime, and looking ahead to my next nurse appointment (the hospital team and my friends and family have been incredibly supportive)!

Good luck 🙂

 

[AnnS]

Not heard about honeymoon period. Diagnosed early april. Now on Nov rapid and levemir. Finding it difficult to get doses right. Nurse has told me to calculate .75 insulin to 10g carbs for novorapid.As I am retired have time to log food and calculate. It is a headache. Had a few lows recently as start doing things and forget. Any advice welcome. Have weekly calls from nurse who logs my sugars. Have been seen by dietician and podiatrist. Have appt. at eye clinic. Not seen by consultant yet. Appt. in 2 weeks time.

 

[TheArchitect]

Thank you for the ‘welcomes’ everyone. It is good to hear other people’s experiences, however similar or not. It all helps to build a better picture of what is going on and what may be to come.

 

[TheArchitect]

Hi and welcome - I'm a newbie too! I'm 24 and was diagnosed with T1 around 2 months ago, and I'm still in the honeymoon phase (I ordered a pizza the other day and got away with it!). Currently on 8 units of Levemir twice daily 12hrs apart and no short-acting insulin at all, but in some ways I'm looking forward to starting that as I have to be very careful about what I eat/drink at the moment.

My levels are pretty unpredictable, but fairly stable (nothing above 8.5 or below 3.9 mmol/L yet), so not knowing what will happen with food is quite frustrating as is not knowing when this honeymoon period will end. Keeping testing in the meantime, and looking ahead to my next nurse appointment (the hospital team and my friends and family have been incredibly supportive)!

Good luck 🙂

Hi Jessica, I homed in on your post as I totally relate to all that you have said. I’m being very conscious of what I’m eating (and logging it using the Carbs & Cals app), but the other evening I demolished a bag of Minstrels (the smaller of the sharing size bags!) and was back down at 6.5 when I tested before bed a couple of hours later. My readings are generally in the same range you are achieving, apart from I had a 3.2 a few weeks ago which led to my Lantus dosage being reduced. At 3.2 I got the serious shakes, so have been very mindful of not going that low again.

Certainly know what you mean about frustration of being in a bit of no-man’s land with the honeymoon, but I think I’ve passed that stage and intend to embrace the benefits of not having to accurately carb count at the moment, despite being careful with food.

Glad to hear you are also getting good support from the hospital team, it has made me feel much more comfortable and confident with what is going on!

 

[trophywench]

Hi Ann! You MUST retrain yourself to make eating whatever you have jabbed for, as an absolute priority and blooming well stick to it. It is - after all - a matter of life and imminent death!

Yes - I am being serious.

 

[Jessica Brown]

Hi Jessica, I homed in on your post as I totally relate to all that you have said. I’m being very conscious of what I’m eating (and logging it using the Carbs & Cals app), but the other evening I demolished a bag of Minstrels (the smaller of the sharing size bags!) and was back down at 6.5 when I tested before bed a couple of hours later. My readings are generally in the same range you are achieving, apart from I had a 3.2 a few weeks ago which led to my Lantus dosage being reduced. At 3.2 I got the serious shakes, so have been very mindful of not going that low again.

Certainly know what you mean about frustration of being in a bit of no-man’s land with the honeymoon, but I think I’ve passed that stage and intend to embrace the benefits of not having to accurately carb count at the moment, despite being careful with food.

Glad to hear you are also getting good support from the hospital team, it has made me feel much more comfortable and confident with what is going on!

At my "hypo" of 3.9, I was very shaky as well and had to get my partner to open a mixer-size can of Coke for me! Half an hour later though I was fine, so I think that treatment is absolutely perfect - I also carry jelly babies (for medicinal purposes of course) for when I don't want the additional caffeine.

When I ordered that pizza a couple of weeks ago I was really worried so I called up the nurse to talk me through a short-acting dose, but all she said was "just enjoy it!", and I really did 🙂 I think at this stage it's important just to enjoy the food you eat, and like you say, not worry about carb counting until you absolutely have to. I'm also still enjoying a few drinks - vital for getting through my PhD! Coming to terms with the diagnosis is tricky enough as it is without having to completely restrict your diet!

 

[Chloe Andrews]

I’m new to the forum but was diagnosed type 1 just before Easter weekend, so I’m a couple of months in and ‘honeymooning’ so thought I’d say hello!
I was started off on a 12 unit dose of Lantus once a day, and have reduced down to 7 units as my pancreas is having another try. I’m interested to hear what experiences others have had with the ‘honeymoon’. I’m told it could last days or months. Will I simply find one day my levels shoot up and that’s it, good bye honeymoon, or is it sometimes a more gradual thing?
My HbA1C at diagnosis was 139, had my first consultant check up today (since diagnosis) and my HbA1C is now 55 which is a relief.
Got to say how great all the Consultants, DSNs and Dietitian have been. Could not have been more supportive.

Hiya! honeymoon periods can vary dependent on the person, I never even had one!

 

[Jessica Brown]

Hiya! honeymoon periods can vary dependent on the person, I never even had one!

I also think it depends on how early they catch you! I guess if you're showing more symptoms that would mean your condition is more advanced and more drastic action needs to be taken right away. The only reason I had my diagnosis is because I was originally having problems with my singing, and thought I might as well have a blood test and general check up at the GP at the same time because I was exhausted all the time - I thought I was anaemic or needed to change my lifestyle a bit (I'm a PhD student and I spend quite a bit of time in the pub 😉), and I hadn't even lost any weight and wasn't really thirsty all the time. That's why it was such a shock!

I'm pretty lucky that they've caught me early though - I can come to terms with my diagnosis without being completely chucked in at the deep end with multiple injections per day (I'm only on 2 right now), and I can arm myself with information gradually so I'll be better equipped when the mealtime insulin does start.

 

[Grannylorraine]

Welcome

 

[TheArchitect]

I also think it depends on how early they catch you! I guess if you're showing more symptoms that would mean your condition is more advanced and more drastic action needs to be taken right away. The only reason I had my diagnosis is because I was originally having problems with my singing, and thought I might as well have a blood test and general check up at the GP at the same time because I was exhausted all the time - I thought I was anaemic or needed to change my lifestyle a bit (I'm a PhD student and I spend quite a bit of time in the pub 😉), and I hadn't even lost any weight and wasn't really thirsty all the time. That's why it was such a shock!

I'm pretty lucky that they've caught me early though - I can come to terms with my diagnosis without being completely chucked in at the deep end with multiple injections per day (I'm only on 2 right now), and I can arm myself with information gradually so I'll be better equipped when the mealtime insulin does start.

It’s sounds like you were lucky to get your diagnosis before more side effects kicked in. I lost quite a bit of weight and was soooo thirsty. I was drinking on average 8 pints of water on an evening and still going to bed feeling thirsty! It was the tiredness that got me, I’ve never been one to fall asleep on the sofa but found myself nodding off if I sat down on a Sunday afternoon.

I’ve just reduced my single daily injection of lantus down to 6 units, and potentially going to reduce again as my pancreas seems to have jumped back into life. Every time I reduce my dosage it is compensating and making it hard to stay away from hypos without extra snacking. I’ve been told if I get down to 4 units they might take me off insulin until I start needing it again. All very unnerving as I don’t really know what to think! Suppose we have no choice but to ride the roller coaster and deal with each twist and turn as it arrives!

 

[Northerner]

It’s sounds like you were lucky to get your diagnosis before more side effects kicked in. I lost quite a bit of weight and was soooo thirsty. I was drinking on average 8 pints of water on an evening and still going to bed feeling thirsty! It was the tiredness that got me, I’ve never been one to fall asleep on the sofa but found myself nodding off if I sat down on a Sunday afternoon.

I’ve just reduced my single daily injection of lantus down to 6 units, and potentially going to reduce again as my pancreas seems to have jumped back into life. Every time I reduce my dosage it is compensating and making it hard to stay away from hypos without extra snacking. I’ve been told if I get down to 4 units they might take me off insulin until I start needing it again. All very unnerving as I don’t really know what to think! Suppose we have no choice but to ride the roller coaster and deal with each twist and turn as it arrives!

Hope things settle for you soon 🙂

 

[Bloden]

Hi TheArchitect and welcome.🙂 Glad to hear your medical team are excellent.😛

 

[SB2015]

Welcome to all of you newbie honeymooners.
I have no idea who thought that is a good name for this period in T1!

Whilst your pancreas still has some beta cells they sometimes decide to play when they have had a bit of a rest before they finally (which for Northerner has been years) give up. During this time there are times when it is unpredictable as they give you no warning about when they are coming out to play. Have weaver things will settle and as you learn more it becomes easier to manage.

One resource that I found a very clear reference book is the book Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas - considered to be the 'bible' for children and young people on insulin regimes. Don't be misled by the title - this book is relevant to people of all ages! I was 53 when diagnosed and still find it useful 10 years on.

Your Diabetes team will help you to adjust your insulin, both bolus (for foods) and basal (for background glucose made by your liver) , it becomes easier and more flexible. This enables you to eat whatever you want (although we still need a healthy diet) when you want and give appropriate insulin to match it. The ratios each of us need will be different and as some of you have found your team will start you off and then you gradually change it.

Keep in touch and let us know how you get on.

 

[HOBIE]

Welcome to the forum 🙂

 

[HOBIE]

It’s sounds like you were lucky to get your diagnosis before more side effects kicked in. I lost quite a bit of weight and was soooo thirsty. I was drinking on average 8 pints of water on an evening and still going to bed feeling thirsty! It was the tiredness that got me, I’ve never been one to fall asleep on the sofa but found myself nodding off if I sat down on a Sunday afternoon.

I’ve just reduced my single daily injection of lantus down to 6 units, and potentially going to reduce again as my pancreas seems to have jumped back into life. Every time I reduce my dosage it is compensating and making it hard to stay away from hypos without extra snacking. I’ve been told if I get down to 4 units they might take me off insulin until I start needing it again. All very unnerving as I don’t really know what to think! Suppose we have no choice but to ride the roller coaster and deal with each twist and turn as it arrives!

Take it easy !