Newly diagnosed

[Deleted member 25429]

I am sorry you are as confused as me they don't make this journey at all easy its bad enough living with it. From my point 10 is high for me I am told between 6 and 8 good for me Lou

I have been talking to my husband all evening about it as he came to the appointment with me . It’s very hard do you go against specialist advice ?x

 

[TheClockworkDodo]

They were at about 24 when I had the dka . But that was 8 weeks ago and I have gradually got them down . If I ate a brown roll now they would spike at about 15/16 I have chosen to eat very low carbs

Would the brown roll spike you even if you injected more insulin with it? For most of us type 1s, the whole point of having insulin is that you can eat what you want (within reason), you don't have to eat ultra low carb, so long as you inject the right amount of insulin, at the right time, for what you eat. If I ate a largish brown roll at lunchtime I'd need a couple of units of insulin for it (twice that if I ate it for breakfast), and then it wouldn't spike me. But if I only had one unit of insulin with it I'd expect a spike, because I wouldn't be matching the insulin to the food.

There are things which would spike me even with insulin though, so it may be bread is a big problem for you - we are all different. I can eat yellow bananas with about 1.5 units of insulin and not spike, but if I ate a brown banana of the same size with the same amount of insulin I'd expect to spike at about 15/16 - they don't seem to agree with me.

 

[Deleted member 25429]

That sounds absolutely bizarre, Denise

Firstly, if she doesn't think you're type 1, she can do tests to find out definitely one way or another, if they haven't been done already. If they have and you've been diagnosed with type 1, then you're type 1 - it's not something that's a matter of opinion! If the tests haven't been done then do ask if they will do them if there's any doubt - the ones you need are a GAD antibody test and a C-Peptide test (they are just blood tests, but the C-Peptide results take a while to come back and they often don't bother to do it when the diagnosis is obvious for other reasons).

Secondly we all need exactly the insulin we need - not needing much has nothing to do with what type you are (and in fact, if you were type 2 on insulin you might well need more insulin than many type 1s). Do you know what your insulin to carb ratio is? Most people assume 1 unit of insulin to 10g carbs, but some of us do need a lot less (and it can vary through the day) - at lunchtime I can need as little as 1 unit of insulin to 28g carbs, which is a very tiny amount indeed. And I'm only using 5 units of basal (the equivalent of Lantus), sometimes I only need 4 units.

The usual guidelines for blood sugar targets (from the diabetes UK site) are:

If you’re an adult with Type 1 diabetes

• when you wake up and before you’ve eaten: 5 to 7mmol/l
• before meals at other times of the day: 4 to 7mmol/l

If you have Type 2 diabetes

• before meals: 4 to 7mmol/l
• two hours after meals: less than 8.5mmol/l

so 6-10 is on the high side of healthy already, the suggestion that you should be higher is really odd. Did you ask her why?

Would the brown roll spike you even if you injected more insulin with it? For most of us type 1s, the whole point of having insulin is that you can eat what you want (within reason), you don't have to eat ultra low carb, so long as you inject the right amount of insulin, at the right time, for what you eat. If I ate a largish brown roll at lunchtime I'd need a couple of units of insulin for it (twice that if I ate it for breakfast), and then it wouldn't spike me. But if I only had one unit of insulin with it I'd expect a spike, because I wouldn't be matching the insulin to the food.

There are things which would spike me even with insulin though, so it may be bread is a big problem for you - we are all different. I can eat yellow bananas with about 1.5 units of insulin and not spike, but if I ate a brown banana of the same size with the same amount of insulin I'd expect to spike at about 15/16 - they don't seem to agree with me.

If I was going to eat a roll I wouldn’t spike now as I know how much insulin I need to stop that happening. I have kept a food diary to help also worked out the carbs . Woken up feeling rotten high sugar levels, think I’m going to ignore her advice and speak to the diabetic nurse tomorrow

 

[SB2015]

Good morning @Denise Winthorpe

As @TheClockworkDodo said, we each need as much insulin as we need, and when I was using pens I ended up getting a half unit pen (children’s and nice colours with stickers!!!) as I needed such tiny amounts of insulin, it was also one of the reasons I switched to a pump where I can make changes if 0.1 units.

I am surprised that your consultant is suggesting that your levels should be higher after 8 weeks, and confused about their change of mind about type. I do know that there is a lot of confusion when showing symptoms as an adult, but the Gad antibody and c-peptide tests can confirm this. If T1 or even LADA there are pesky antibodies destroying your beta cells, and you need to take on the work that they were doing. You need to be giving insulin. I would ask for eh tests if these have not yet been done.

Well done on reducing your carbs to enable you to get your levels back in range. They should offer you an education course on how to adjust your doses to match what you choose to eat, whether that be high or low carb. Later you can then star to look at timing of doses to fine tune your levels.

Good to hear your husband attended the appointment with you. Having someone else there can help to prompt you to ask questions that you may have forgotten to ask, and help clarify things after the appointment.
What reason did they give you for wanting higher levels? They often tell people that it is to avoid hypos. However with the modern equipment we are able to manage things a lot more easily and keep things a lot safer.

That is a bit of a diatribe. I will stop and wait for more news.

 

[SB2015]

Ps The quality of consultants vary. You can ask to see a different one.

 

[Nomad722]

Hi Denise, Sorry to hear it, try not to worry too much, there are a lot of type1's here who will offer much comfort By the way if that's your real name you might need to ask the admin to change it as they consider it 'risky.'

 

[Deleted member 25429]

Hi Denise, Sorry to hear it, try not to worry too much, there are a lot of type1's here who will offer much comfort By the way if that's your real name you might need to ask the admin to change it as they consider it 'risky.'

Thanks I’ve contacted the admin to get it changed .

 

[Deleted member 25429]

Just been to see the diabetic nurse at the hospital, at last got some support . Blood tests have confirmed I have high levels of two of the antibodies . So confirmed type 1. I can now laugh at the surgery nurses comment when she said I was too healthy to be type 1 . This forum is amazing at supporting us newbies . Thank you

 

[TheClockworkDodo]

So glad you've got confirmation of your type 1 diagnosis at last, and also some support from the hospital nurse - hope you managed to get her contact details for future reference! Hospital diabetes nurses are often the most knowledgeable people, I always find them more helpful than consultants.

Your surgery nurse sounds clueless though - "too healthy to be type 1"? We have marathon runners and cyclists and all sorts on here, and there are professional athletes, rugby players, and football players who are type 1!

 

[Deleted member 25429]

Yes thanks I have got the contact details for the nurse . I think the nurse at the surgery and the consultant were making sweeping comments based on my low insulin need ( obviously still in honeymoon period at the moment ) and my HbA1C initial test result . My favourite rugby player is type 1

 

[SB2015]

Yes thanks I have got the contact details for the nurse . I think the nurse at the surgery and the consultant were making sweeping comments based on my low insulin need ( obviously still in honeymoon period at the moment ) and my HbA1C initial test result . My favourite rugby player is type 1

Glad that you now have the correct diagnosis Freddie.

It makes things a lot easier, but as you have found things can be fairly unpredictable at the start, as you go through the Honeymoon Period. You can now start to work on adjusting ratios etc.

If Harry can do it, running around the rugby field, then we can

 

[Nomad722]

Some further information for you Freddie1966, I sometimes feel the same although most likely for different reasons as I am a borderline diabetic. Just walk into a shop if you near one if you feel a bit strange. I don't know if this will help but maybe keeping a little snack with you might help (my mother used to keep a few biscuits and cakes for when she was driving the car if she felt 'funny'). Keep your chin up.🙂

 

[TheClockworkDodo]

Just to point out that biscuits and cakes - though better than nothing - are not really ideal hypo treatments as the fat in them will slow down the action of the carbs. Anyone on insulin should carry really fast-acting carbs, like dextrose tablets, jelly babies, glucose gel, or fruit juice, with them all the time.

Going into a shop might be a good idea if you need help though - I went in the cafe at Dunelm Mill once when I was hypo and asked for help, and they were lovely (I had my own hypo treatment with me, but they supplied a seat and biscuits to stabilise my blood sugar after I'd treated the hypo).

 

[Deleted member 25429]

We have cartons of orange juice strategically placed around the house. We also have them in both cars, in my handbag, and on my desk at work . I also have Melba toasts as they come in a small packet . The one snack I do find that works for me mid morning is a raw carrot . Not very exciting but it does what I need it to do

 

[SB2015]

We have cartons of orange juice strategically placed around the house. We also have them in both cars, in my handbag, and on my desk at work . I also have Melba toasts as they come in a small packet . The one snack I do find that works for me mid morning is a raw carrot . Not very exciting but it does what I need it to do

Nothing wrong with a nice raw carrot. I will happily chomp on one of those.

How are you managing now? Are they helping you to adjust your insulin for different meals?

 

[Deleted member 25429]

Much better since I saw the specialist nurse thanks . Still in the honeymoon period so a little unpredictable over the last two days

 

[TheClockworkDodo]

The changing weather will also have an effect - I can't remember whether anyone has mentioned that already on this thread, sorry - but you may well find you need more/less insulin when it's hotter than when it's colder.

 

[Deleted member 25429]

Thanks for the info . I am feeling better than I have in months . Still struggling to get enough sleep . I don’t know if it’s diabetes related or not x

 

[SB2015]

Thanks for the info . I am feeling better than I have in months . Still struggling to get enough sleep . I don’t know if it’s diabetes related or not x

Good to hear that things are settling for you, and it is only when you have got some insulin going in that you realise just how ill you were before diagnosis. You will gradually get to know what to change and when.

Just keep asking any questions that you have.

 

[Nomad722]

Just to point out that biscuits and cakes - though better than nothing - are not really ideal hypo treatments as the fat in them will slow down the action of the carbs. Anyone on insulin should carry really fast-acting carbs, like dextrose tablets, jelly babies, glucose gel, or fruit juice, with them all the time.

Going into a shop might be a good idea if you need help though - I went in the cafe at Dunelm Mill once when I was hypo and asked for help, and they were lovely (I had my own hypo treatment with me, but they supplied a seat and biscuits to stabilise my blood sugar after I'd treated the hypo).

At the moment I don't really know what hypos are. Mum wasn't on insulin she was at the time a type2 and a former nurse.