type 1 or type 3c

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lindsey50

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Type 1
hi, im new to this forum but have been type 1 insulin dependent diabetic for 8 years. Ive had so many problem's including operations on my wrists and now thumbs due to insulin use. ive had so many hypo events and am insulin sensitive. ive also had severe pancreatitis and have had many ct and mri scans due to pancreatic cysts. i take creon with food and this has increased. this was diagnosed before type 1 diagnoses. i have had a severe hypo episode in march and i really thought i was in serious trouble due to long term anti biotics, 7 weeks course. i immediately stopped and my next available diabetic appointment was june 26th last week. I have never seen this new nurse before and she was one of the best nurses ive ever seen. last visit they said i was insulin sensitive before the hypo event, this visit is im insulin sensitive, but i think you have type 3c diabetes not type 1 !!! Im a bit scared tbh, my gp has never heard of it, which i know is untrue as it was and still is called pancreatogenic diabetes, my nurse said get in touch with gp and that was weds 28th june and he hasnt got back after our initial phone call. im angry and confused and would greatly appreciate any advice please, lindsey x
 
it really does sound like it to me too, i was put straight on insulin by a diabetic nurse without any deeper investigation, i was actually leaving the hospital on an outpatient, stopped and asked how much insulin i took, i was under 6 stone because of the pancreatitis I'm only 5ft 1 and the heaviest ive ever been was 9 stone when pregnant, and i said none, she then injected 5 units there and then, now I'm having so many issues regarding insulin, i don't no where to go from here tbh, my gp hasn't phoned back, thanks again for your opinion i truly appreciate it.
 
Sorry to hear of your struggle but at least you have a diagnosis of 3c which many don't initially they are told they are Type 2 so that should entitle you to be treated as Type 1 with technology available to you and the support of the diabetic clinic rather than the GP.
Once you get a suitable insulin regime and have the means to test your blood glucose levels and adjust your insulin for the carbohydrates you eat things will get better.
Hopefully the other Type 3cs will be along to give you some reassurance and words of wisdom.
 
i haven't got the diagnoses of 3c, and ive been using insulin for 8 years now, they should have started with metiformin not insulin, and its even harder to treat than type 1, i already carb count and weigh my food but its still so unpredictable and lots of lows , i use a libra but there's no staying level for long periods, and now my 24 hour insulin is dropping through the night, ive lowered by half the amount form diagnoses so from 10 units now 5 and still dropping.
 
lindsey50 said:
i haven't got the diagnoses of 3c, and ive been using insulin for 8 years now, they should have started with metiformin not insulin, and its even harder to treat than type 1, i already carb count and weigh my food but its still so unpredictable and lots of lows , i use a libra but there's no staying level for long periods, and now my 24 hour insulin is dropping through the night, ive lowered by half the amount form diagnoses so from 10 units now 5 and still dropping.
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Sorry I'm slightly confused, did your Type 1 diagnosis predate the issues with the pancreatic cysts as if that was a correct diagnosis you would definitely need insulin. It may be you just have not had the correct regime.
Are you now saying you think you should be on metformin rather than insulin.
 
No it was the pancreatic cysts and MRIs and CT scans first, 8 months later a type 1 diagnoses , and im on novorapid and tresiba. it scaring me now with how much my night levels are dropping even though ive reduced over the years from 10 units to 8,7,6, and now 5 units and still dropping.
 
If you’re still going low overnight, reduce the Tresiba more. I wonder if a different basal insulin might suit you better eg a twice daily one. You could then take much less at night and not affect your daytime dose.
 
Thats a brilliant idea Inka, id never thought of that, I'm trying this tonight, id feel safer too tbh, thankyou x
 
Levemir and others are twice daily basal insulins. They last much shorter a time than Tresiba. You could ask to change and give one of them a go. Tresiba can only be used once daily as it’s so long-acting.
 
ill be on the phone first thing tomorrow to my diabetic nurse and see what she suggests but that sounds a much better idea than one injection with more units, thanks again, im on it x
 
Hi and welcome from me too.

It does sound like you are Type 3c but many doctors simply have not heard of the Type 3c category, particularly GPs and 8 years ago even less would have heard of it. In many respects, you have been lucky to be categorized as Type 1 from the start and offered the same treatment as a Type 1 ie MDI insulin whereas many Type 3c diabetics are initially diagnosed as Type 2 and have to battle long and hard to get insulin and the likes of Libre.
If you are Type 3c and clearly underweight and sensitive to insulin then Metformin is unlikely to help you and I am not entirely sure why you are upset about being classified as Type 1 because Type 1 entitles you to the top level of support that you need as a Type 3c, albeit, Type 3c has additional difficulties in some instances.

The important thing is to adjust your insulin doses to whatever your body needs and perhaps look at changing your basal insulin if you are finding it hard to adjust it so that it holds you steady during the day but causes hypos at night. As @Inka mentioned, a different shorter acting basal Like Levemir which can be split into two different doses where the day and night doses can be adjusted separately may be more suitable to your body's needs than Tresiba which provides a very uniform level of cover day and night. Levemir can be adjusted on a day by day basis if necessary if you have had a particularly active day or if as a woman, your hormones cause you to need more at certain times of the month etc. Tresiba would not suit me at all because I need much less insulin at night than during the day and if I have been very active for several days in a row, I need no basal insulin at night. Levemir allows me to adjust it for what my body needs. The profile of Tresiba is such that splitting it would not work because it lasts nearly 40 hours so each dose overlaps the next, whereas Levemir just lasts about 12-18 hours.

Definitely continue to reduce your Tresiba dose until you stop having nocturnal hypos...... assuming they are genuine hypos and not Libre compression lows..... caused by lying on the LIbre sensor. Always important to double check any lows, particularly during the night because Libre will give you an erroneous low reading if you lie on the sensor.
 
Also, if you are just taking small doses, do you have a half unit reusable pen?

Being on such low doses, you would likely benefit from being able to adjust your doses more finely than single units, both for bolus (meal time) insulin and basal, so ask about that too if you don't have half unit pens.
 
For your diabetes a diagnosis of T1 and T3c will have the same requirements, type 3c adds in the need for croon and other considerations which @eggyg @Proud to be erratic and @soupdragon will be experts on.

I would second the advice of switching to Levemir and splitting your dose to a morning and evening injection. There is no point in doing this with Tresiba as it last too long, whereas Levemir lasts a shorter time, so you can separately adjust the day time and night time dose.

A half unit pen is very useful where you are sensitive to insulin. You mention that you are already carb counting. Have you you also made adjustments to your carb to insulin ratios? I find that I needed different ratios at different times of the day. It takes a bit of testing, made a lot easier with the sensors, to find what your body needs.

Our needs also change over time and even with the weather. I know when I started off I thought that these doses and ratios were fixed and I just needed to account for variations in carbs. It is a bit of a juggling act.

One other thought - I struggled to manage night levels until I got a pump where I was then able to adjust my background/basal insulin hour by hour.

Let us know how you get on switching your background insulin.
 
Thanks guys for some really good advice and i didn't know they did half measures because ive thought i need 4.5 at night, 4 isn't enough but 5 is dropping me all day long. The diagnoses and treatment is different for type 3 c and ive had so many issues with this from the beginning, that's why I'm upset, ive had horrible lows lasting over an hour whilst my sons on the phone to the paramedics, not like any lows ive experienced until this year, type 3c is more difficult to manage than type 1 and they would have started me off on metiformin, i didn't get that chance to see and it was known as pancreatogenic diabetes, its name has been updated to type 3c.Diabetic nurse is phoning me back today x
 
I hope you have a good outcome with your call with your diabetic nurse.
It is not clear from what you say if you are also taking a bolus insulin dose with your meals or just basal insulin once a day.
It may be that also needs some adjustment.
 
How do you treat your hypos (Do you know the rule of 15?) and do you check recovery with a finger prick or just go off Libre?

If you are not insulin resistant (and it sounds like you are very much the opposite.... ie you are very insulin sensitive) then Metformin is unlikely to helpful with Type 3c, so I am not sure why you think it would be beneficial. Metformin is a Type 2 medication primarily. It helps to make the cells more receptive to insulin if they are resistant and it inhibits the liver from releasing so much glucose. It has a very minimal impact on BG levels and I would imagine your BG was very high at diagnosis for them to start you on insulin straight away.
 
type 3c diabetes is started with metformin, not insulin to begin with, that is what i am trying to explain. I have not been given that chance, ive had operations on my wrists and am awaiting an operation on my thumb also due to insulin. Ive had severe pancreatitis and take Creon with meals and have done for 8 years, this has doubled in dosage, and like ive also stated the lows are like NO other ive ever had before, my head was NUMB, i don't think checking every 15 minutes would have helped because it was like it for over an hour ,ill upload my libra sensor pic so it shows how long i was low for, blood monitor would not read only saying lo. And yes im diagnosed type 1 so every carb is counted for with insulin, novorapid fast acting.x
 
Ive also phoned DiabetesUK ,they are super and are red flagging me for a call back today ,thanks guys x
 
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