Newbie, Type1 and very confused...

[Rachette]

Hi, I was recently diagnosed in March this year and spent the last couple of months trying to get my head round all of this?!
I am over 40 and overweight (according to everything I'd every read/ known prior to diagnosis, would be classic type 2, as my father is T2.)
Finally after 12 weeks, my consultant has confirmed I am T1 and will now be life long insulin user.
I can't describe how I felt reading that in black and white when the letter came through.
I really don't understand what all the tests / results and measurements of blood mg, mmol, antibodies that are written all over my diagnosis letter and, although have an appointment with consult in June, I'm finding myself looking up all sorts on the internet trying to work it out.
Could you help me with one thing please, when talking about your HbA1c levels I notice a lot of people give a number, whereas mine is written as a % , what does that mean ?
Thanks for reading.

 

[jay hay-char]

The "number" is a measurement in millimoles per mol, whereas the percentage figure isn't . Percentage has been the conventional measure of HbA1c in the UK but the millimoles per mol measurement is an international standard which is now used in the UK to try and simplify things. More info here, including conversion tables to convert from one to the other.

 

[Rachette]

The "number" is a measurement in millimoles per mol, whereas the percentage figure isn't . Percentage has been the conventional measure of HbA1c in the UK but the millimoles per mol measurement is an international standard which is now used in the UK to try and simplify things. More info here, including conversion tables to convert from one to the other.

Thank you for your reply, so the number at the side of my % number means the same thing then but in mmol ? Or have I got completely the wrong end of the stick? It says 11% 97mmol/mol

 

[Daibell]

Hi. An HBa1C of 11% is equivalent to 97mmol; the latter is the latest units we are all supposed to use now. 97mmol is far too high which is why you are being offered insulin. Be aware that having insulin when overweight is not ideal but unavoidable as you may have some insulin resistance. Getting that weight down should be a high priority to enable the insulin to do it's best. Stick to a low-carb diet and ensure you use the meter to measure blood sugar so the insulin can be adjusted as neceesary.

 

[Rachette]

Thanks Daibell, so will I eventually be able to adjust insulin myself as I feel such an annoyance having to phone the nurse every time I don't feel right ? Is it something that becomes self managed as you get more experienced? I've had my dosage change so much over the last 8 weeks and now they have taken me off metformin all together and I'm on insulin only, but it's not right and my BS are still uncomfortably high. Was so much happier when I was sitting in the 7's. I really don't like 13-16 range at all especially now I know what it feels like to be comfortable.

 

[Claire007]

Hi Rachette, just saying 'hi' really as I'm only 4 weeks into my diagnosis as a type1 myself! God there's a lot to take on isn't there? Are you just on a set dose at the moment? I was initially but only for the first few days, it quickly became apparent I was on too much insulin and I had a crash course on carb counting/correction doses and it's been much better since.

Have you been given any advice at all re carb counting? Have they given you a ratio to work with?

I have to say I'm shocked it's taken 12 weeks to give you a diagnosis, from everything I've read, I'm surprised you weren't extremely poorly by that point but I'm a novice myself.

My Hba1c was 108 on diagnosis and after 3 weeks it was down to 83 which I'm told is excellent but hey, I'd never even heard of it let alone understood it last month.

I wish you well and I'm sure ore experienced folk will be along soon.

 

[Rachette]

Hi Claire007
Way too much to take in I find I'm completely overwhelmed with it all
I think it's the lack of knowledge that is frustrating me most (my knowledge, that is) I like to be in control of situations and will educate myself as much as possible but have found, so far, that when asking questions at my health surgery or diabetic clinic they are so busy that they just don't have the time yo really explain things in lay men's terms , it's almost like skimming the surface. For instance I had no idea just how important carb control was until speaking to a very knowledgable friend about. I'm still struggling with that side of it too. The main concern for me at the moment is this constant nausea and headache. I started on insulin then they added in metformin twice a day, after a few weeks the nausea and cramps were too much so I've been told to stop the metformin and reduce my insulin but now I'm consistently high BS and feel really **** again. It was so good to feel 'normal' on around 5-7 throughout the day that these 13-15+ are awful.
Wow sorry for such a moany post!

 

[jay hay-char]

Thank you for your reply, so the number at the side of my % number means the same thing then but in mmol ? Or have I got completely the wrong end of the stick? It says 11% 97mmol/mol

Yup, that sounds about right.

Don't worry about moaniness and worry - it was bad enough for me when I was diagnosed and I'm only T2 on a low dose of metformin. However scary it seems at the moment, things will improve and you will be able to make more sense of keeping things under control and hence will feel more comfortable. The phrase "it's not a sprint, it's a marathon" is one that you will hear a lot round these parts, but only because it's true . One of the important functions of this forum is that there will always be someone to be there when you're hitting a dark moment, or want some reassurance. We are all on your side.

 

[Rachette]

Yup, that sounds about right.

Don't worry about moaniness and worry - it was bad enough for me when I was diagnosed and I'm only T2 on a low dose of metformin. However scary it seems at the moment, things will improve and you will be able to make more sense of keeping things under control and hence will feel more comfortable. The phrase "it's not a sprint, it's a marathon" is one that you will hear a lot round these parts, but only because it's true . One of the important functions of this forum is that there will always be someone to be there when you're hitting a dark moment, or want some reassurance. We are all on your side.

Thanks jay hay-char, that's really good to know.

 

[Claire007]

I'm sorry your care has been so hit and miss, I have to say mines been great and I've been given lots of appointments to talk through stuff, often lasting 2 hours. The book 'straight to the point' issued by JDRF has been really useful in explaining things in lay men's terms I was given a folder of stuff, and this was included but I think you can request a free copy on line.

I'm on a ratio of 1unit to 10g of carbs at the moment, except for breakfast where it's .5.
I tend to go low rather than high, so I tend to round this figure down or knock a unit off if I'm lowish before eating. I think you'd find things easier if you were given a ratio to work with.

 

[Rachette]

I'm sorry your care has been so hit and miss, I have to say mines been great and I've been given lots of appointments to talk through stuff, often lasting 2 hours. The book 'straight to the point' issued by JDRF has been really useful in explaining things in lay men's terms I was given a folder of stuff, and this was included but I think you can request a free copy on line.

I'm on a ratio of 1unit to 10g of carbs at the moment, except for breakfast where it's .5.
I tend to go low rather than high, so I tend to round this figure down or knock a unit off if I'm lowish before eating. I think you'd find things easier if you were given a ratio to work with.

Thanks for the book recommendation, I'll look into that now.
as for your carb ratios (I know I sound really stupid here) I have no idea what you mean but having read a little on other threads tonight I now realise I need to find out about this asap.

I think this will be key to me loosing the weight I need to.
In the last four weeks I have actually put weight on! It's so bloody frustrating.

My last and 1st appointment with the DSN and clinic dietician this carb ratios wasn't mentioned at all ? I was simply told to reduce portion size, eat little but often and that I didn't need to avoid any food groups just eat less.
All well and good but during my hypos I feel like a woman possessed and could eat my own fingers dipped in sugar!! It's horrendous! Afterwards it feels as though I've ran a marathon

 

[himtoo]

Hi Rachette
welcome to the forum . your diagnosis of 97 is not the worst I have seen -- try not to worry --
we have all been there at the beginning and things will get easier as time goes on.
as it is early days you are really best advised to try and keep to a routine of eating the same things every day ( others may not agree with this ).

I was diagnosed a long time ago ( 43 years) and I ate the same things ( or very very similar) every day for years.

If you can try eating the same portions every day with the same insulin injections you should begin to get some balance and reduced levels -- there is always time for variety in a few months -- most important right now is to get some structure and stability into your routine.

most important of all -- take it 1 day at a time -- it is a very long race this -- not a sprint !!

 

[Rachette]

Hi Rachette
welcome to the forum . your diagnosis of 97 is not the worst I have seen -- try not to worry --
we have all been there at the beginning and things will get easier as time goes on.
as it is early days you are really best advised to try and keep to a routine of eating the same things every day ( others may not agree with this ).

I was diagnosed a long time ago ( 43 years) and I ate the same things ( or very very similar) every day for years.

If you can try eating the same portions every day with the same insulin injections you should begin to get some balance and reduced levels -- there is always time for variety in a few months -- most important right now is to get some structure and stability into your routine.

most important of all -- take it 1 day at a time -- it is a very long race this -- not a sprint !!

Thanks himtoo, that's a good idea, my units of insulin only keep changing because Ive been told to call the nurse if my BS are too high or too low or because of the nausea and cramps.
Each time I call, they adjust either the insulin or metformin, they have now removed the metformin all together.

 

[himtoo]

the main thing to remember in these early days is a balanced meal ( i chose evening as an example ) as follows

chicken breast grilled 150grams ( 0 CHO ) -- bit of garlic and olive oil and flattened prior to grilling
160 grams new potatoes ( 25 CHO ) boiled with 15 grams butter ( 0 CHO )
80 grams steamed broccoli ( 0.9 CHO )
80 grams steamed cauliflower ( 1,8 CHO )
80 grams steamed green beans ( 2.3 CHO )

total CHO ( carbohydrate = 30 )
if they have told you to take 1 unit of fast acting insulin per 10 grams CHO this would mean an injection of 3 units

there are of course other factors that come into play but as a basic starting point this will let you know how you are doing .
i would also recommend getting the gem collins - carbs and cals book as it gives all the nutritional numbers needed ( some will tell you to get it as an APP which you may prefer )

 

[himtoo]

the above is a typical evening meal for me and repeating this for a few days / weeks will certainly give you clues as to how your body reacts to the insulin / carb ratio of 1 unit per 10 CHO ( most likely what your DSN has advised )

calling them after the fact is reactive on their part-- if you stick to a fairly rigid diet and keep testing your blood, patterns will emerge and you will be able to "discuss dosage changes " instead of being told what to do with not much idea of why

 

[Rachette]

the above is a typical evening meal for me and repeating this for a few days / weeks will certainly give you clues as to how your body reacts to the insulin / carb ratio of 1 unit per 10 CHO ( most likely what your DSN has advised )

calling them after the fact is reactive on their part-- if you stick to a fairly rigid diet and keep testing your blood, patterns will emerge and you will be able to "discuss dosage changes " instead of being told what to do with not much idea of why

Great info, thanks.
My DSN hasn't advised insulin units per carb ratio.
I was put straight onto 12 units in the morning and 12 units at night following A&E admission for suspected heart attack (It wasn't) but they did discover I was diabetic during my stay in hospital.
Metformin was added, morning and night about a month later and removed earlier this week.
My insulin units were adjusted too,

 

[himtoo]

can you please advise what insulin you are taking ( may help with further advice )

 

[Rachette]

can you please advise what insulin you are taking ( may help with further advice )

sure its Humulin M3

 

[himtoo]

ok so here is a profile of this insulin
http://www.nhslanarkshire.org.uk/Se... Adjustment for twice daily mixed insulin.pdf

with a mixed insulin it is extremely important to stick to a fairly rigid regime as the insulin contains a fixed amount of short acting and long acting insulin in the 1 dose -- 30% or 3.6 units is fast acting and 70% or 8.4 units is long acting

keeping to regular times and similar meal amounts ( carb value )will really help bring your levels down

 

[Rachette]

ok so here is a profile of this insulin
http://www.nhslanarkshire.org.uk/Services/Diabetes/Documents/Diabetes - Insulin Adjustment for twice daily mixed insulin.pdf

with a mixed insulin it is extremely important to stick to a fairly rigid regime as the insulin contains a fixed amount of short acting and long acting insulin in the 1 dose -- 30% or 3.6 units is fast acting and 70% or 8.4 units is long acting

keeping to regular times and similar meal amounts ( carb value )will really help bring your levels down

Thank you, that makes a lot of sense and shows me why I've suddenly started to wake up with higher BS again when I had previously got them to a stable level.
It's my evening units that have been reduced.
Will definitely start to follow a regular pattern of food and see if that doesn't get this new weight increase down again.
Thank you for your help.