Honeymoon period experiences

[Amy2993]

Hello,

was wondering what other people’s honeymoons with type 1 were like?

I was diagnosed 3 months ago after going in DKA and significant weight loss. I have firmly believed ever since that I am Not diabetic (despite what my DN tell me haha)

After gradually reducing my insulin after hypos, I haven’t used any insulin for 3 weeks and my levels remain good. My HBA1C came back today as 33, which my DN says is low, but okay if I’m not having hypos. She did say it was odd for someone in DKA to not need any insulin in their honeymoon and so has done an antibody test which will take 3 weeks for the results.

Was anybody elses honeymoon period like this? Or has anyone been misdiagnosed type 1?

if I was type 2 would my levels still be stable without any medication, can type 2s have a form of honeymoon?

sorry for all the questions

 

[Justphil]

Hello,

was wondering what other people’s honeymoons with type 1 were like?

I was diagnosed 3 months ago after going in DKA and significant weight loss. I have firmly believed ever since that I am Not diabetic (despite what my DN tell me haha)

After gradually reducing my insulin after hypos, I haven’t used any insulin for 3 weeks and my levels remain good. My HBA1C came back today as 33, which my DN says is low, but okay if I’m not having hypos. She did say it was odd for someone in DKA to not need any insulin in their honeymoon and so has done an antibody test which will take 3 weeks for the results.

Was anybody elses honeymoon period like this? Or has anyone been misdiagnosed type 1?

if I was type 2 would my levels still be stable without any medication, can type 2s have a form of honeymoon?

sorry for all the questions

I got diagnosed type 1 at the end of July. Like you i went into hospital with DKA. Although looking back i had symptoms since the start of February. I think it started with Corona Virus. The doctors in the hospital told me that even though there was no lockdown or media around it many of their doctors also got coronavirus in Feb.
I was ill in bed with what felt like a jellyfish on my lungs that i couldn’t cough up. None of my family have type one and its usually genetic. Or doctors believe can be triggered by a virus. There is also more people being diagnosed with type 1 since the pandemic.

To add, i read online that the coronavirus may have caused a new type of diabetes. However nothing is confirmed. It would explain both our strange circumstances.

I have not received my blood test results either yet (2 months later) so i could still turn out to be type 2. (The doctor said he is 80% sure i am type 1 though)

 

[Amy2993]

Thank you for replying! I have heard a lot about coronavirus and diabetes. However I began losing weight around a 9months before my diagnosis otherwise I would have definitely thought the 2 were linked.

My DN keeps telling me she’s sure I’m
Type 1 and people don’t get misdiagnosed with it. However she’s now ordered an antibody test which makes me think she is questioning it?

Are you currently experiencing any type of honeymoon phase?

I got the libre which has helped massively to monitor my BG levels. I love it! Hope alls well

 

[Rhys.]

Hello Amy,

Hope you are well. I am also in a honeymoon phase. I have been off insulin for over 5 weeks now and It's been awesome! From April 20th to Late July, I was injecting and then started noticing mini changes, in which I started turning my doses down. By early August, I was off everything completely.

I do find it a little bit frustrating though, because I will finger prick ( temporarily come off the libre ) and see a 4.3 mmo/L and naturally, I would panic a little and go for a drink. But I will just wait 10 mins and see it working towards 4.7 mmo/L and then usually finishes at 5.2 mmo/L another 10 minutes later, it's so strange after all the extensive training I've learned about diabetes, to see myself performing normal.

Plus side, we need to enjoy this while it lasts. Mine could finish tomorrow, or next week, I will never know. I just completely pigged out last week, enjoying pizzas, normal pepsi and meals, 2 months ago, I was very cautious of. Weird.

The surge in Type 1's this year, is very strange I must admit. I am still in denial tbh, but requesting another antibody test tomorrow to see if there is any change. The threshold for IA-2 is 7.5, mine was only 28, but GAD around 260 and the threshold was 50 I believe.

All the best

 

[jamesfitz]

To those going through the honeymoon phase for me its critical to get on insulin straight away even if its just fast actingn insulin to cover meals.

when you eat a meal check your levels 1 hour after eating and see what they are like

its vital to preserve as many beta cells as possible so levels should be kept below 7.8 where possible

For those that adapt insulin quickly long term control should be easier

 

[Amy2993]

To those going through the honeymoon phase for me its critical to get on insulin straight away even if its just fast actingn insulin to cover meals.

when you eat a meal check your levels 1 hour after eating and see what they are like

its vital to preserve as many beta cells as possible so levels should be kept below 7.8 where possible

For those that adapt insulin quickly long term control should be easier

My levels are always between 4-7.5. Once a week I’d say I go to 8/9 but come down within 15 minutes. Do you think I should take insulin for this? I worry it would lead to more hypos and eating to cover my insulin. And to be honest it’s nice not worrying about being over a certain level for bedtime or driving or hypos.

I have read taking insulin increases chances of honeymoon lasting longer as it give your pancreas a break, but I also read having too much insulin on board would also end the honeymoon faster. Such a difficult choice.

 

[MattH892]

Hey @Amy2993 ,

It comes down to the problem that everyone reacts differently to every aspect of diabetes.. ultimately as long as you’re using common sense you’ll know what works best for you.

If you’re lefts are consistent between 4 and 7, I wouldn’t be taken insulin either as this would certainly put me in a hypo, however for you, it may not. It really is trial and error. My honeymoon period ended after 6 months, then the trail and error start all over again. So if what you’re currently doing is working for you, stick with it until there’s a need to change it

Hope that helps!

 

[iblamedan]

@Amy2993
We were prob diagnosed a similar time! I was in DKA and spent a week in hospital. When I left I was on around 40units of insulin a day (9 novorapid for a piece of toast in the morning!). But like you I was slowly reducing it as kept hypo-ing. For the last 3 weeks i've been on only 1 unit of lantus a day! Which has been great, although a couple of spikes to 15mol its gone down within a couple of hours.

I've defo kept thinking (hoping?) I'm not diabetic and have been reading loads about honey moon - if you google "Type 1 Remission phase" (thats the medical term) you can see some of the studies with it and from the ones i've ready so far; the more serious DKA you were in the more likely to need less insulin during honeymoon, it also says males have a longer and better honeymoon, and >25y on diagnosis tends to have a longer honeymoon on average but the variance in all of their figures were massive so although average you could sit on either side of the bell curve. My DSN actually has one client on year 4 of honeymoon, although said they're on a small long acting dose now!

All documents other than one suggest there is no honeymoon in type 2, while type 2 rarely go into DKA they have whats called Hyperosmolar Hyperglycemic Nonketotic Syndrome (HHNS) so if in DKA it also adds to being Type 1. At the min, you don't have any clinical symptoms of type 1 which is great, i'm taking advantage of it!

 

[TypeZero.]

Thank you for replying! I have heard a lot about coronavirus and diabetes. However I began losing weight around a 9months before my diagnosis otherwise I would have definitely thought the 2 were linked.

My DN keeps telling me she’s sure I’m
Type 1 and people don’t get misdiagnosed with it. However she’s now ordered an antibody test which makes me think she is questioning it?

Are you currently experiencing any type of honeymoon phase?

I got the libre which has helped massively to monitor my BG levels. I love it! Hope alls well

Hi,

I thought I was the only one!!! I hear people losing weight and then being hospitalised in two weeks but my one took months and months from about June/July 2019 to April 2020 (about 10 months!!!)

Although for my honeymoon I haven’t experienced any decreased need for insulin, I’ve been using the same amount for the last 5-6 months

 

[Pam R]

I have been in the “honeymoon” phase for 32 months to date! I was 74 when I was diagnosed! I take a split Lantus dose of 4 and 4 units and can maintain my glucose levels between 5 and 10. My recent HBA1c was 48. I eat a low carb diet and try to walk every day. Long may this continue!

 

[Rose22]

I think my honeymoon phase is starting to end after 6 months on insulin. And after about 4 years of trying to keep it in normal levels.

 

[ert]

I desperately wanted not to be type 1 when I was diagnosed. I felt if I could stay off insulin for as long as possible, I had a chance to provide my Specialist was wrong. I managed two years, but even starvation and over-exercise in the end, had no effect. In the end I accepted insulin.

 

[Amy2993]

The consultant today has told me he is very confident I was misdiagnosed with type 1. He couldn’t say what caused the DKA, but he was almost certain I was not diabetic. I understand it’s very very rare and usually people are but people should know it does happen! Thank you all on here for all your help throughout xxx

 

[eshobabu]

Hello,

was wondering what other people’s honeymoons with type 1 were like?

I was diagnosed 3 months ago after going in DKA and significant weight loss. I have firmly believed ever since that I am Not diabetic (despite what my DN tell me haha)

After gradually reducing my insulin after hypos, I haven’t used any insulin for 3 weeks and my levels remain good. My HBA1C came back today as 33, which my DN says is low, but okay if I’m not having hypos. She did say it was odd for someone in DKA to not need any insulin in their honeymoon and so has done an antibody test which will take 3 weeks for the results.

Was anybody elses honeymoon period like this? Or has anyone been misdiagnosed type 1?

if I was type 2 would my levels still be stable without any medication, can type 2s have a form of honeymoon?

sorry for all the questions

I am very surprised how they diagnosed you with Type 1 without an antibody test? I dont know if that is standard in the UK, but here in the US they send out antibody tests rightaway before diagnosing a T1 vs T2. My daugther was diagnosed september after they found IA-2A antibodies and slightly elevated GADA. She was IAA negative.

 

[becca59]

I am very surprised how they diagnosed you with Type 1 without an antibody test? I dont know if that is standard in the UK, but here in the US they send out antibody tests rightaway before diagnosing a T1 vs T2. My daugther was diagnosed september after they found IA-2A antibodies and slightly elevated GADA. She was IAA negative.

The guidelines here advise against it particularly if there are various pointers like extreme weight loss, high levels. It should only be used if there is some doubt.