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Frustrated

Erin85

Erin85

Well-Known Member
Messages
116
Type of diabetes
Type 1
Treatment type
Insulin
Hello, diagnosed t1 8.5months ago and all in all, coping fine. Last hba1c down to 45 and trying to keep blood sugars tight in preparation for pregnancy (hoping to start trying to conceive early 2016). Had thought that my honeymoon had finished/was coming to an end as my insulin needs had crept up and I had worked out a carb-insulin ratio that worked for all my meals. However, the last few weeks I have been plagued by hypos. I have been down at 1.8 and more recently experiencing 2-3 hypos a day. I know this isn't normal or right, and saw my diabetic nurse yesterday. She has said that I am still honeymooning and to cut back on the insulin for a few days before trying to work out what I need again.

Today I decided to experiment. Last night I took 4units of Lantus rather than my usual 6 (I know this is v low dose) and NO insulin at all today. I had a double bowl of porridge, ran 5k, sandwich and bite of chocolate at lunch and creamy veg/pasta for dinner with milk and small piece of dark chocolate. My bloods today have been great apart from a hypo before dinner?! How is this even possible?! I know that my Lantus could be higher than it needs to be, but how can my pancreas have recovered so much as to need virtually no insulin??

I have been trying so hard to keep healthy and fit, and understand my condition but it is SO frustrating! I feel like the diabetes gods are having a laugh with me! I know there are no answers to this and that I just need to ride the honeymoon out but I'm so tired of trying so hard with no results!!! (Apart from bloody hypos lol) x x
 
It's really good that you have so much insulin production left. It's not unusual that there's not any need for basal insulin during the remission phase, the pancreas can handle that. Since you ran and ate slow carbs it's not concerning at all that you didn't need any insulin. Sounds like you're doing a great job, keep it up!
 
Hi Erin85. I was diagnosed 11 months ago with T1 and put on insulin straight away. 5 weeks ago I stopped the insulin due to unexplained hypos and I'm managing perfectly ok with bg levels in the normal range. Not sure what has happened, but I'm enjoying and making the most of this remission from the dreaded D.

I do low carb in an effort to help preserve my pancreas for as long as possible.
 
Erin85 said:
Hello, diagnosed t1 8.5months ago and all in all, coping fine. Last hba1c down to 45 and trying to keep blood sugars tight in preparation for pregnancy (hoping to start trying to conceive early 2016). Had thought that my honeymoon had finished/was coming to an end as my insulin needs had crept up and I had worked out a carb-insulin ratio that worked for all my meals. However, the last few weeks I have been plagued by hypos. I have been down at 1.8 and more recently experiencing 2-3 hypos a day. I know this isn't normal or right, and saw my diabetic nurse yesterday. She has said that I am still honeymooning and to cut back on the insulin for a few days before trying to work out what I need again.

Today I decided to experiment. Last night I took 4units of Lantus rather than my usual 6 (I know this is v low dose) and NO insulin at all today. I had a double bowl of porridge, ran 5k, sandwich and bite of chocolate at lunch and creamy veg/pasta for dinner with milk and small piece of dark chocolate. My bloods today have been great apart from a hypo before dinner?! How is this even possible?! I know that my Lantus could be higher than it needs to be, but how can my pancreas have recovered so much as to need virtually no insulin??

I have been trying so hard to keep healthy and fit, and understand my condition but it is SO frustrating! I feel like the diabetes gods are having a laugh with me! I know there are no answers to this and that I just need to ride the honeymoon out but I'm so tired of trying so hard with no results!!! (Apart from bloody hypos lol) x x
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your situation sound very similar to mine,i've been off insulin for about 4 weeks now and my morning routine is similar to yours also,with the porridge ;) then 4 mile run,and omelette after.I've been to cinemas and munched a full bag of popcorn then checked sugars and they've been low!!!! enjoy while it last i suppose right. I had a GAD test done and my Diabetic nurse told me that due to the test been negative that would mean I ain t type 1,ok then!!! think she blurted that out a little hastily :)
 
Hello, thanks for replying. I'm quite shocked that I'm not the only one lol!

June_C, are you completely free from insulin? 5 weeks is amazing! You must be enjoying it? I'm enjoying being hypo-free, actually feels like a wee holiday from Diabetes lol. Wiserkurtious, are you the same as June_C, no insulin at all? I am still taking my long-acting insulin as have had no other hypo's since the one before my dinner that I mentioned in my previous post. Saturday was the first time I've been able to exercise since being diagnosed that I've not had to have insulin and/or glucose! Same again today - is a great feeling :) only one out of normal reading, about an hr after my run today, at 10.5 but is now down again to 6.4.

I think I'm going to stop worrying about it, accept it, and enjoy it :)

Thanks again, and all the best x
 
I don t know tbh could be honey period,but ya it is confusing to me and my diabetes team.only time will tell right good luck for the future and remember to enjoy life to its full :) just let diabetes tag along ;)
 
being as active as you are and being in the honeymoon period its no suprise this is happening.......

just keep an eye on things......;)
 
Sorry wiserkurtious, I meant are you not injecting any insulin at all? No short-acting or long-acting?

I'm not as active as I sound lol! I try to run 5k parkrun on a Saturday morning, but aside from that I don't do much anymore. I did get out for a run today, as a mood-enhancer. Although if it prolongs the honeymoon period and means I don't need as much insulin, I guess there are two reasons to get out and get fitter :)

Still testing every mealtime and before bed, and before driving. A bit obsessed with my numbers at the minute, so hopefully I will notice when it starts to creep back up. Thanks x
 
There are two tests that anyone in this situation should ask for. The first is the GAD test. It shows up the antibodies that attack the beta cells. If this comes back negative, then it is unlikely that T1 is occurring, although not impossible.

Secondly, the C-Peptide test. C-Peptide correlates with Insulin production, so getting this done following a negative GAD test would tell you whether you produced more or less insulin than "normal". You'd then have a better basis for a diagnosis of what is going on.
 
active muscles will use the insulin super efficiently and so resistance to the insulin drops way down........

meaning less insulin, this is the goal for everyone I suppose but its hard....lol
 
Aaaah I see novorapidboi26! I used to have to skip my insulin injection with the meal closest to my run/workout and have glucose on top of that, but more recently I've had to introduce insulin as well. Saturday and today I had no insulin or glucose. Felt normal, and it was lovely :)

I didn't know that was the name for the test tim2000s, but when I was admitted to hospital and diagnosed, they tested for antibodies and it came back positive. When I was newly diagnosed, I was convinced that my body was going to perform a miracle and I could be the first person ever whose body had reversed type1. Then I was told that I had the antibodies and accepted I was diabetic lol. Although I don't know what my actual reading was. Do you know what range the readings usually are? Or is it just a positive/negative result?

Thanks for the info guys x
 
Erin85 said:
Hello, thanks for replying. I'm quite shocked that I'm not the only one lol!

June_C, are you completely free from insulin? 5 weeks is amazing! You must be enjoying it? I'm enjoying being hypo-free, actually feels like a wee holiday from Diabetes lol. Wiserkurtious, are you the same as June_C, no insulin at all? I am still taking my long-acting insulin as have had no other hypo's since the one before my dinner that I mentioned in my previous post. Saturday was the first time I've been able to exercise since being diagnosed that I've not had to have insulin and/or glucose! Same again today - is a great feeling :) only one out of normal reading, about an hr after my run today, at 10.5 but is now down again to 6.4.

I think I'm going to stop worrying about it, accept it, and enjoy it :)

Thanks again, and all the best x
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Yes, totally free from insulin :)
 
Erin85 said:
Sorry wiserkurtious, I meant are you not injecting any insulin at all? No short-acting or long-acting?

I'm not as active as I sound lol! I try to run 5k parkrun on a Saturday morning, but aside from that I don't do much anymore. I did get out for a run today, as a mood-enhancer. Although if it prolongs the honeymoon period and means I don't need as much insulin, I guess there are two reasons to get out and get fitter :)

Still testing every mealtime and before bed, and before driving. A bit obsessed with my numbers at the minute, so hopefully I will notice when it starts to creep back up. Thanks x
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Ya been told to come off insulin all together,this was over about a month ago now. think when we get diabetes kinda turns people to been a little more organised with all the blood sugar reading and what not.think there waiting for my pancreas to give in altogether :)
 
tim2000s said:
There are two tests that anyone in this situation should ask for. The first is the GAD test. It shows up the antibodies that attack the beta cells. If this comes back negative, then it is unlikely that T1 is occurring, although not impossible.

Secondly, the C-Peptide test. C-Peptide correlates with Insulin production, so getting this done following a negative GAD test would tell you whether you produced more or less insulin than "normal". You'd then have a better basis for a diagnosis of what is going on.
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ya proabably why the diabetic nurse told me,a little hasty i suspect,that I'm not type 1. I asked about the C-peptide test and she told me they don t normally do this test until after about 5 years of having diabetes?!?!? but ya I'm a little in limbo atm.
 
wiserkurtious said:
ya proabably why the diabetic nurse told me,a little hasty i suspect,that I'm not type 1. I asked about the C-peptide test and she told me they don t normally do this test until after about 5 years of having diabetes?!?!? but ya I'm a little in limbo atm.
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Have they done a GAD test?
 
Erin85 said:
Aaaah I see novorapidboi26! I used to have to skip my insulin injection with the meal closest to my run/workout and have glucose on top of that, but more recently I've had to introduce insulin as well. Saturday and today I had no insulin or glucose. Felt normal, and it was lovely :)

I didn't know that was the name for the test tim2000s, but when I was admitted to hospital and diagnosed, they tested for antibodies and it came back positive. When I was newly diagnosed, I was convinced that my body was going to perform a miracle and I could be the first person ever whose body had reversed type1. Then I was told that I had the antibodies and accepted I was diabetic lol. Although I don't know what my actual reading was. Do you know what range the readings usually are? Or is it just a positive/negative result?

Thanks for the info guys x
Click to expand...
tim2000s said:
Have they done a GAD test?
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ya it come back negative.
 
they was looking for a couple of things they said in the gad results and both come back negative!! I've been left a little in limbo atm she said she was going to speak to the consultant and let me know
 
In your shoes I would push for the c-peptide test. If they don't know whether you are diabetic it would at least rule it out if the results came back normal.
 
tim2000s said:
In your shoes I would push for the c-peptide test. If they don't know whether you are diabetic it would at least rule it out if the results came back normal.
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going to :)
 
Hi there, I'm writing this without having read all the posts so I apologise if I am repeating what someone else has said.

I've been type 1 for 7 years now and still honey mooning. My carb insulin ratio goes from 1 - 1 to 1 - 9 over a few weeks. It's very frustrating and with such a major change in insulin requirements I find that I don't eat much while I'm working out what my body is doing. Hypo after hypo is no fun. That's not to say I deal with it the best way but I just wanted to let you know it's quite normal - as normal as diabetes can be of course - so don't feel you are alone. There's no time for the honey moon period to last. I remember not injecting anything but levimir for 8 months and as quick as my rapid acting insulin requirement stopped it started again. Absolutely crazy. In a way it would be nice to get out the honeymoon period to know where you are but having said that I don't think it works that way anyway.

I hope you figure out the change in requirements and continue to do what you're doing. It's a tough ride this diabetes marlarky but we all do well so don't be hard on yourself.

X
 
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