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Confused - Help?

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Ghopper02

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Relationship to Diabetes
Type 1
Hi

I am 30 years old and was diagnosed with Type 1 diabetes in April this year. My initial sugar readings were 26 and 24, after been taken on by the diabetic clinic i was put on Levemir as my long acting which i have 8 units of every morning and 3 units of novo rapid with my meals. Everything has been fine for the last few months but over the last week i have started dieting and training for a 10k run by running 5k every day.

I am struggling to keep my sugars up over the last two days, although not really low i have felt very shaky and weak, so much so (and please dont shout at me for this if its completely wrong) that i havent had any insulin today at all, no levemir or novo rapid. My day has been like so

9am - crunchy nut cornflakes (reading 6mmol)
11am - 5k run (reading 8mmol)
1pm - Ham sandwich and bag of crisps/chocolate bar (reading 5mmol)
6pm - weightwatchers cottage pie and 2 bags of steam veg plus chocolate biscuits (felt low) (reading 8mmol)
8pm - glucose tablets (reading 8mmol)

11pm (NOW) - checked my reading again and i'm 7.5

I know these readings aren't perfect but i dont know why i'm not sky high with out any insulin at all today.

Any help will be VERY GREATLY received as i cant fathom this out!

thanks

Richard
 
Excersise is good for you but i think you need some proper tests done ! Who diaagnosed you ? Good luck with find more info & keep a diary of what is going on. 🙂
 
Manchester Diabetic Clinic diagnosed me, i was sky high and had all the symptoms, thirst, toilet, tiredness, dramatic weight loss etc and readings were high unless i had insulin but now low.
 
It sounds to me as if you might be honeymooning - or you might have been misdiagnosed! Honeymoon for a type 1 is when the body still produces some insulin - in fits and starts, making blood sugars unpredictable.

Levermir lingers even after you haven't taken it so your levels today probably won't continue - can't you talk to your diabetes team for advice? Some of those numbers are remarkable but some of them are a bit high and I'm worried that if you don't take at least a little Levermir you could end up making yourself very ill - I'm hoping Northerner is reading this as he had a similar experience I think and could share what happened to him.

It sounds as if you're having phantom hypos as well - these happen when your body has got used to high blood sugars so it gives you hypo symptoms when you're not actually low. I believe the advice is generally not to treat these as otherwise your body will take longer to adjust to normal levels.
 
Hi Richard, welcome to the forum 🙂 It's not particularly unusual for people to find that they need less insulin as they begin to make changes to their diet and lifestyle, and you started on quite low doses anyway. Many people experience a 'honeymoon' period where their pancreas still produces insulin, and this can improve after a few months of treatment - a similar thing happened to me, but not with such drastic effects that I could reduce my insulin to zero, however I did reduce it significantly.

Who is treating you for your diabetes? You really need to speak to your Diabetes Specialist Nurse (DSN), consultant or GP to discuss what is happening. I have been diagnosed 4 years, but in April I was able to stop my long-acting insulin completely (lantus) and my short-acting has also reduced further (to give you an idea, I was on 20 units lantus and 45-50 units novorapid at diagnosis, now I am on around 15 units novorapid only).

You will be feeling low when your levels are still above hypo levels because your brain is getting used to the 'new you' you will gradually reduce the levels at which you start to feel these symptoms if you can keep good control.

I would also highly recommend getting a copy of Type 1 Diabetes in Children, Adolescents and Young People by Ragnar Hanas - it will help to answer many of your questions about Type 1 diabetes and provides a useful reference to browse and be prepared for things. You're more than free to ask us any questions too, of course! 🙂
 
I posted on this a couple of days ago. Like you diagnosed in May, had a month of drinking a lot, going to the toilet a lot and lost a lot of weight. My BS was 14-16 when diagnosis and had keytones present. Was told they thought I was type one and confirmed that my peptide test showed a reduced insulin production. In addition, they said ther was no presence of antibodies which suggested it was not my immune system attacking my cells. Was on 8 units of levimir and 4 units of Novo Radpid with meals. About a month ago I started to reduce the novo rapid with meals as I was getting hypos. In addition, I forgot to take my insulin with me when we went out for a pizza one day and I noticed that by BS did not rise too high after eating a big pizza even when not taking the novorapid. Decided to stop taking novorpaid and the BS seemed to continue to hold.

I have been gradually reducing the levemir over the last 6 weeks until i stop altogether 10 days ago. BS stayed in range. I went for a peptide test last week and they told me its now working in normal ranges.

Spoke to them yesterday and to be honest they are not sure what is the diagnosis. They have said it could be a very strong honeymoon period but its not common to see somone come of insulin all together. They they spoke about me being type 2 but I don't fit into the classic type 2 risk factors and then they spoke about a certain type of type 2 that mimics type one but its more common to find it in people of Afro-caribbean decent.

So basically I break every conventional risk factor and they are not even 50% what the diagnosis is. I guess what I have learnt is that type 1 and type 2 is extreamly difficult to define.

They have asked me to continue to monitor and go back in 2 months.

Like you I have increase exercise a little, but nothing drastic. I have also cut out the sugars in the diet, but I ate fairly well before so therehas not been too many changes in the diet. I take a regular supplement of garlic, codliver oil, ginseng (american and Asian) and as an Acupuncturist I treat myself regularly.

I guess I just need to monitor carefully, but its interesting this is happening to others.
 
Wow, that's really interesting Andrew! I've never had the C-peptide or antibody tests because my consultants say they can't justify the costs. Sounds like we might be in similar categories, although I'm not sure if I could ditch the insulin totally. Interesting also that you were able to stop the novorapid before needing to stop the levemir - I had to stop the lantus because I was waking too low for comfort.
 
Wow, surprised they have not checked the c-peptide and antibodies. Thought that was part of the standard diagnosis. Might be worth asking again since you have had a change in output.

Personally I think this is a very strong honeymoon because if its was type 2, I don't think I would have had a reduced c-peptide count in the first place.

Only time will tell.
 
andrew1974 said:
Wow, surprised they have not checked the c-peptide and antibodies. Thought that was part of the standard diagnosis. Might be worth asking again since you have had a change in output.

Personally I think this is a very strong honeymoon because if its was type 2, I don't think I would have had a reduced c-peptide count in the first place.

Only time will tell.
Click to expand...

I've always though Type 2 was indicated primarily by insulin resistance, and if the pancreas was still producing then it would be producing a lot more than the normal 20 units a day that a non-diabetic person produces, at least in the early stages after diagnosis. So I would agree that your pancreas appears to have recovered a lot of function, perhaps due to the changes you have made and because it's had a bit of a 'rest and recovery' period after being supported by the injected insulin 🙂
 
andrew1974 said:
Wow, surprised they have not checked the c-peptide and antibodies. Thought that was part of the standard diagnosis. Might be worth asking again since you have had a change in output.

Personally I think this is a very strong honeymoon because if its was type 2, I don't think I would have had a reduced c-peptide count in the first place.

Only time will tell.
Click to expand...
It's not standard practice to do CPeptide and GAD65. I had to kick up a real fuss to get CPeptide done 8 years after diagnosis.

I understand that what can happen with T2s is that sometimes they have had diabetes for years before diagnosis without symptoms. Then the pancreas gets worn out with producing lots of insulin and the numbers climb, the symptoms become pronounced etc. Then a spell on insulin will give the pancreas a rest and it starts working again. In the USA it's common to put T2s with high numbers on insulin for a period to start with in order to rest the pancreas.

This may not be the case for you of course. I guess you have to wait and see.
 
Have still had no insulin today and have done no exercise apart from tidying the house.

had a bowl of shredded wheat this morning and sugars went up to 13 but now back down to 6.

Am very confused and my diabetes centre is shut, tried the hotline but they couldn't give me any advice.

Might be a long weekend ahead.
 
Ghopper02 said:
Have still had no insulin today and have done no exercise apart from tidying the house.

had a bowl of shredded wheat this morning and sugars went up to 13 but now back down to 6.

Am very confused and my diabetes centre is shut, tried the hotline but they couldn't give me any advice.

Might be a long weekend ahead.
Click to expand...

I'd suggest trying to keep your carbs to a minimum over the weekend so your meals have less impact on your levels. Sounds like you might need very small amounts of novorapid at certain times of day if you eat carbs, especially in the mornings - certainly the case with me. Just keep a regular eye on your levels and keep a record of what you are eating - this will give the diabetes team something to work with when you (finally!) get to speak to someone. Let us know if you have any further concerns over the weekend, there's always someone around to share experiences with 🙂
 
for anyone following, just been for a curry, chicken madras, chips and naan and 5 large bottles of cobra 1 1/2 hours later 6.9mmol without any insulin today. this i vey confusing now!
 
Alcohol often works to lower BG. It keeps the liver busy so it can't release glucose.
 
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