Newly diagnosed Type1 and SO frustrated

Wallin

Member
Messages
24
Type of diabetes
Type 1
Treatment type
Insulin
Hi
I had my pancreas removed last November, and feel so frustrated by the lack of advice.
I've read three books on T1 diabetes, all of which explain the generalities. I wake up at least three times in the night either worrying that my BS is as high as 18-20 then during the day my BS can be as low as 3.2. I have had support from the diabetic nurse, and doctor, but only in looking at my BS chart, and trying different insulins. I have a fridge full of different pens.
I have continually asked to do the Daphne course so that I can have better understanding, and more control rather than blanket doses. The first diabetic nurse told me there wasn't one available. The second nurse told me that she could teach me everything I need to know, but our ten minute appointment only covers her working out new doses. Similarly my diabetic doctor looks at my uncontrollable BS, and tells me what doses to take. At long last he did say that I would benefit from the Daphne course, but had to be referred by a diabetic clinic within a hospital. My appointment was six weeks away. Once referred to the course, there is an eighteen month waiting list.
I have had unrelated peripheral neuropathy for seventeen years. My mobility is severely restricted, so I am paranoid my high BS readings will exacerbate the PN.
The doctor mentioned correction doses, but when I pressed him further on how to administer them, he told me that I would learn how to do it on the Daphne course.
I just feel as though I'm banging my head on a brick wallMy diabetes HAS taken over my life.
I'm testing ten times a day.
Any advice will be very gratefully received.
 
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himtoo

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4,805
Type of diabetes
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Pump
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why can't everyone get on........
Hi Wallin
welcome to the forum :)
not getting the greatest of help at all are you.

while you are waiting here is an online carb counting course you can look at
http://www.bdec-e-learning.com/
you do need to register though

and you are in the right place here too to ask loads of questions
 
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Daibell

Master
Messages
12,655
Type of diabetes
LADA
Treatment type
Insulin
Hi. Can I assume you are on the Basal/Bolus regime. Carb-counting is essential with this and my DN taught me it in 10 minutes when she started my insulin. It's up to you whether you follow any guidance on this website as most of us are 'amateurs' but most HCPs start the carb-counting ratio at 1 unit of rapid insulin to 10gms of carbs; that's what I was started on and my DN gave me a leaflet showing pictures of 10gms of typical foods. I'm currently on around 1.1 units t0 10gms but it will vary a bit from person to person. I'm slim and only 62Kg. Those with a higher BMI may need a different ratio. I'm assuming your Basal has been balanced? If not recently get the DN to help you with this
 
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Engineer88

Well-Known Member
Messages
2,130
Type of diabetes
Type 1
Treatment type
Pump
Also try and get a grip on how many carbs you are eating per meal and add it to you bg records. there are apps to help with this such as Mysugr. this can indicate if you need to increase or decrease your insulin per meal/snack.
 

Wallin

Member
Messages
24
Type of diabetes
Type 1
Treatment type
Insulin
Thanks for the advice. It makes sense to me, but my doctor has told me to take 4 units of Apidra with every meal, and 5 units of Tresiba (bolus) at 10.00pm
I have kept records of BS, meals, carbs, and dosage from day 1.
 

tim2000s

Expert
Retired Moderator
Messages
8,934
Type of diabetes
Type 1
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Other
I guess if you have had your pancreas removed you also have to be extra careful managing the lower end of the spectrum as you don't have the safety net provided by alpha cells in the form of glucagon, which causes the liver to create glucose. On the plus side, this also means that you are unlikely to suffer dawn phenomenon in any noticeable way...
 
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Wallin

Member
Messages
24
Type of diabetes
Type 1
Treatment type
Insulin
Hi thanks for taking time to reply.
Nobody mentioned glucagon.
I was very primed in how major the surgery was. I was told that the whole pancreas was being removed along with the rest of the Whipple operation, but nobody gave me any idea how difficult the diabetes was going to be.
 

Engineer88

Well-Known Member
Messages
2,130
Type of diabetes
Type 1
Treatment type
Pump
Hi thanks for taking time to reply.
Nobody mentioned glucagon.
I was very primed in how major the surgery was. I was told that the whole pancreas was being removed along with the rest of the Whipple operation, but nobody gave me any idea how difficult the diabetes was going to be.

I assume it wasnt really a choice though, no matter how hard the diabetes is (nobody wants diabetes!). If you want to share readings and such we can do our best to help.
 

Natalie1974

Well-Known Member
Messages
871
Type of diabetes
Type 1
Treatment type
Insulin
Sorry to hear you're having a bad time...sounds like a bit of a nightmare.

It can all be quite terrifying at first but I promise you it will get easier...

The course recommended above..BDEC is really useful and a great starting point...but please take your diabetic nurse up on her offer...it really is quite simple and the majority of diabetic nurses are extremely good at explaining the in's and outs of carb counting...even within a 10 minute slot...once you've got it figured out...you'll be able to calculate your own doses based on insulin:carb ratio. Usually diabetic nurses are quite accessible and will often call you back to discuss any concerns you have...also you may be able to call the clinic and see if you can bring your appointment forward a little if you're worried

An excellent book is http://www.amazon.co.uk/Carbs-Pocke...qid=1434032197&sr=1-2&keywords=carbs+and+cals which gives pictures of all different kinds of foods/portion sizes and carb values, they also have an ap which is handy if you're out and about, although there is also a pocket size book which will easily slot in a bag or pocket.

As tim2000s said you may be at a slight disadvantage having had your pancreas removed and not having the safety net of glucagon producing alpha cells...for this reason and also due to your Peripheral Neuropathy I wonder if you have a strong case for a CGM - Continuous Glucose monitor, some of which will sound an alarm if your BG goes under or over range. These are usually supplied by the Diabetic clinic but can be quite hard to obtain...but definitely worth an ask under the circumstances.

Diabetes doesn't need to take over your life...sure initially it takes some time to get your head around it but after a while it will slowly all start to slot into place and you will start to take it all in your stride...keep testing as this is the best way to see how things affect you and try to stay positive.

Best wishes
Natalie
 
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Wallin

Member
Messages
24
Type of diabetes
Type 1
Treatment type
Insulin
Sorry to hear you're having a bad time...sounds like a bit of a nightmare.

It can all be quite terrifying at first but I promise you it will get easier...

The course recommended above..BDEC is really useful and a great starting point...but please take your diabetic nurse up on her offer...it really is quite simple and the majority of diabetic nurses are extremely good at explaining the in's and outs of carb counting...even within a 10 minute slot...once you've got it figured out...you'll be able to calculate your own doses based on insulin:carb ratio. Usually diabetic nurses are quite accessible and will often call you back to discuss any concerns you have...also you may be able to call the clinic and see if you can bring your appointment forward a little if you're worried

An excellent book is http://www.amazon.co.uk/Carbs-Pocke...qid=1434032197&sr=1-2&keywords=carbs+and+cals which gives pictures of all different kinds of foods/portion sizes and carb values, they also have an ap which is handy if you're out and about, although there is also a pocket size book which will easily slot in a bag or pocket.

As tim2000s said you may be at a slight disadvantage having had your pancreas removed and not having the safety net of glucagon producing alpha cells...for this reason and also due to your Peripheral Neuropathy I wonder if you have a strong case for a CGM - Continuous Glucose monitor, some of which will sound an alarm if your BG goes under or over range. These are usually supplied by the Diabetic clinic but can be quite hard to obtain...but definitely worth an ask under the circumstances.

Diabetes doesn't need to take over your life...sure initially it takes some time to get your head around it but after a while it will slowly all start to slot into place and you will start to take it all in your stride...keep testing as this is the best way to see how things affect you and try to stay positive.

Best wishes
Natalie
 

Wallin

Member
Messages
24
Type of diabetes
Type 1
Treatment type
Insulin
Thank you For your encouraging advice.
I have Carbs and Cals, and am raring to go. It's my diabetic doctor who is holding me back.
The DN has gone off on leave for six weeks.
On the positive side, I have asked my doctor to refer me to the hospital of my choice, and they have a very large, advanced diabetic clinic. It's just when I can get an appointment.
I have looked into buying a continuous meter myself, but the company I was recommended to have exhausted their stock, and don't know when they will have them again. They will contact me as and when. It's all a waiting game isn't it?
Thanks again for the encouragement.
Sue
 
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