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Samclay

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Good afternoon everyone! My name is Sam.

around 3 months ago I was diagnosed with type 1 after being treated in hospital for DKA! I didn’t know I was diabetic until around 1/2 weeks before going in to hosptial where I started with symptoms of diabetes. when admitted my BG was 29 and ketones 5.8 after 6 days I was discharged and given novamix 30.

for a start I couldn’t get my BG below 15-19
then it started slowly coming down.
I was then put on long lasting levemir to take at night time and Fiasp for with my meals and started carb counting, during the last week my blood sugar has been between 4.8-6 and I started to notice that every time I took insulin it took me low so I was then eating more to bring it back up, so the past 2 days Iv not took any insulin at all and my blood sugar has stayed between 4.8-6.8 without insulin, do you think this is to do with the ‘honeymoon period’? Can you also not be a diabetic even after a diagnosis?


Don’t want any of that to sound stupid!!!
Cheers!
Sam
 
Hi Sam, I think it’s very likely to be the honeymoon period so it might be worth reducing your insulin a little and see if that helps, keep monitoring your bloods though. I'd really recommend you speak first to a DSN or endocrinologist though as I'm just a person on the internet and don’t know your medical background etc etc.
 
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Hi @Samclay and welcome to the forums.

If you were up at 29mmol then I would find it difficult to believe that there's nothing wrong.

It would be a guess but I'd say that the honeymoon period is the most likely explanation although it's unusual not to need any additional insulin at all during this period.

What type of foods are you eating?
 
Hi mate! Yeah I there must be something wrong! And yesterday I had a toastie for dinner, I had a bit of chocolate and a chicken burger for tea, I was eating to see if it would spike up but it wasn’t doing!
I’m going to ring the diabetes team tomorrow as there shut over the weekend that’s why I posted on here just to see what everyone else thought!
 
I did start to reduce my insulin intake and then Friday night I said to my wife I’ll just stop tonight to see what happenes but it’s like it’s normal!
 
Welcome, Sam. I'm sorry you've had a tough time. You need some more blood test results to see how much insulin you're producing - a c-peptide, as well as GAD/IA2 antibody tests to help confirm your diagnosis. I was diagnosed with blood sugars similar to yours and managed to stay off insulin for two years with exercise and a keto diet. They monitored my c-peptide, which was below 0.2 ng/mL which is a type 1 on diagnosis. I deteriorated onto insulin in the end.

https://www.diabetes.co.uk/c-peptide-test.html
 
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Hi, thanks for your briallint reply, I’m glad to hear (glads the wrong word) that it’s not just me! I felt like I’d done something wrong, or if there was something more wrong with me, obviously I do need more tests but when I was In hosptial I had my blood took around 3 times a day every day I was in there for tests so they must have found something to put me on insulin! I’ll contact my DSN tomorrow morning and see what they say. I’m a self employed joiner and work on a price, so I work hard, I rang them Friday and they said do to my work and how cold it is then that’s probably why it’s low, but iv not done anything this weekend and not took insulin and it’s nnot dropped or spiked!
 
Samclay said:
they must have found something to put me on insulin!
Click to expand...

DKA plus your age would get you a pretty immediate T1 diagnosis, and DKA is lethal without insulin. We get occasional folk on here posting that they don't seem to need insulin any more and maybe they are not diabetic but I only remember one ( @Amy2993 ) where the doctor agreed. (But I think they just diagnosed her on the basis of a DKA and didn't do antibody tests). I agree with the others that you are most likely in the honeymoon period, but talking to your team will give you the reassurance you need.

Good luck.
 
Right that’s brilliant! Thanks for your view!
 

Hi,

Welcome to the forum.

My take on it? The hard graft you appear to be back into doing, coupled with the "honeymoon" fits & starts of the pancreas as it does the "dying swan."

I have to admit I need to lower my insulin levels on "school days" with some of the jobs I do..
Things will will get a little easier as you find yer feet. & the "saw dust" settles..
 
Hello Sam,

Story sounds very very familiar buddy.

I think, you are experiencing a more extreme partial remission period right now, but sadly it's only temporary. After a few months of Insulin giving your remaining Beta Cells some rest, they have now started to kick into gear again. This can happen to some of us, which is great news for you if it's true!

I was diagnosed in April 2020 and came off Insulin completely 2nd week of August 2020. I am still off insulin to date which is around 5 months. Mine could finish tomorrow, or next week, or next year, who knows? I know exactly what it feels like, feeling like you need to eat or drink, to avoid Hypo's. I was having a hypo, literally everyday around July / August.

I would definitely consult with your nurse first thing Monday morning. Are you monitoring by finger pricking? Or do you have a libre system in your arm? What is your blood sugars, first thing in the morning at the moment?

Just for some reassurance, please get yourself some " Blood Keytone Test Strips ". These will monitor your Keytones to see if there are any present. If your blood sugars are doing great and you have very low blood keytones, this will act as a much better reassurance for you mate.

Any advice, if I take myself back 5 months, was to take it very easy on the Type 1 Diabetes Cure. Once my honeymoon started, I was trying to force my opinions on professionals and myself, that I am Type 2 or I am a 1 in a million chance of a complete remission. Personally, I would love to wish this for you and anyone who is type 1, but just be realistic and enjoy the next road, with a little less hassle. Mental health, is just as important as Diabetes.

Main thing at the moment, if you are experimenting with your insulin / no insulin ( My doctor even encouraged this, within a sensible moderation ), check your blood keytones my man.

All the best

Rhys
 
Thanks for your reply! So it does sound very familiar to what you have been through too! I’m going to ring them at 9 as soon as they open!

my blood sugar this morning was 6.6 and was 6.1 before I went to bed, what’s your blood sugar like during this phase? It just worried me that something was wrong with me but with you story it was reassured me.

like you say I kept questioning what if I’m not type 1 what if I’m type 2 or if there’s something more sinister wrong with me! But after being in hospital they must have done tests to determine I’m type 1!

thanks for your reply mate
 
Exercise can impact our insulin requirements for 48 hours. So if you were working hard on Friday, this could still impact your insulin needs over the weekend.
And be aware, there are many things that can affect our blood sugars including food and exercise - you may be getting the hang of this diabetes lark so less stressed and needing less insulin.
Sure, it is unlikely to affect your insulin needs so much that you need none, but combined with the honeymoon period, if could be.
For example, a few years ago, 5 years after my diagnosis, I went hiking in the Himalyas. I was walking for about 6 or 7 hours a day with lots of up hill and no work stress. I gradually reduced my basal insulin to stop hypos. After about a week, my basal insulin was reduced to a tenth of usual.
 

Morning mate,

I would guess, that you tested positive for 2 or more antibodies when they took your bloods a few months ago. The most common is Anti-GAD mixed with either IA-2, Zinc and a few more. Mine were GAD and IA2. Recently, I only had GAD antibodies in November, but my IA-2 came back negative on a more recent test I had done, which left me still a bit confused...

I usually wake up between 5 and 6.5 buddy. I do often see spikes to 12 after large meals, but it's down to within range within 2 hours of EVERY meal. Some meals, it won't go above let's say 7, which is normal. My theory of this, is that the Autoimmune attack that I had, has eliminated some BETA cell mass, which is why I spike fairly high. You may be the same or different.

I shouldn't be doing this really, but I've been eating and drinking ( even normal pepsi ) or whatever I wanted now for the past 4 - 5 months. It is putting strain on the last remaining BETA cells that are working, but at the same time, I want to live my life as I did before April last year... This will need to be a decision of yours, whether you want to eat very clean and preserve the honeymoon aslong as possible or eat as you were before and even now, but potentially cut it short.

Just make sure you keep an eye on " Blood Keytones " mate. I know I keep banging on about it, but that's the early concern, once you stop taking insulin.

Let us know your updates buddy.

Rhys
 
Morning mate, it seems as though what had happened to you is also happening to me!

Iv just got off the phone to the DSN and she said that it is more then likely the honey moon period, I think the only reason Iv been worrying is 5 years ago my grandma died of pancreatic cancer, and when you read up online on big old dr google they can be linked! But she’s put my mind at ease as Iv not got a single symptom! Haha!

I won’t lie, I tried to prove a point to my wife this weekend by having chocolate/jelly babies and some koppaberg to see if it spiked or went up and it didn’t!!!

since diagnosis of type 1 I have started eating a lot more cleaner then I use to and started cutting snacks and takeaways out, I’m a serious foodie so it was hard doing so, but if it means I live a healthy lifestyle and stay alive for my baby then it’s fine by me!

also I think I’d rather the honey moon period end and be back on insulin full time as it just feels like now it’s going to jump back in at anytime and mess me up!! I’m getting a libre on Wednesday so the DSN has said from then she will be able to see exactly all my BG readings as you can share all the info some how.
I do regularly check my ketones after suffering DKA in the first place and it’s not something I want to happen again!
The body’s a strange old thing eh?
 
Hi mate! Thanks for the info, this weekend I purposely did nothing so see if it would go back up but it didn’t, but like you said Friday could affect sat/sun, I’ll see what this weekend brings!!

thanks
 

Obviously only your medical team can advise you but it does sound very similar to my honeymoon. I was fortunate in that my Mrs had seen some posters about the signs of diabetes in children, and when drinking back to back pints of water and weeing 5x in the night, she suggested i went to get checked, they picked it high BGs before any major complications.

For me it was an initial diagnosis, straight onto insulin (long acting), and took a couple of weeks before i got a formal antibody test which confirmed the inevitable.

My honeymoon has slowly tapered out rather than dropped off a cliff, and is still going to some degree. Supposedly maintaining good sugars during the honeymoon can help to prologue it, but I'm not sure whether there is much science behind that.

What i would say, and not everyone would agree, is the honeymoon is a bit of a blessing, in that it makes it much easier to control your blood sugars (with your pancreas picking up a lot of the slack), so you can get used to carb counting and doses and general management of the condition, so if nothing else, enjoy your current situation and keep making healthy lifestyle choices.
 
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