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Busdriver60

Busdriver60

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Relationship to Diabetes
Type 3c
Hello this is Paul
 
Hi, Paul - welcome to the Forum. I see that you're Type 3c. We have a number of Type 3c members and I'm sure they'll be along shortly to welcome you, too.
 
Hello Martin
 
ok that will be good to meet other people with the same condition. I'm still trying to come to terms with it. Its still a big shock for me.
 
Hi and welcome from me too.

Would you like to tell us a bit about how your diabetes diagnosis came about and what medication you have been given to manage it. Type 3c diabetes is caused by damage, disease like pancreatitis or trauma to the pancreas including partial or total surgical removal and the treatment of it varies depending upon how much damage there is, so some people can manage with oral medication at least in the early stages whilst others need insulin straight away. Knowing what has caused your diabetes and what treatment you are on will help other Type 3cs relate to your situation and give appropriate advice. It would also help to know if you have been prescribed Creon or other enzyme supplement to help you digest food?
 
Hello Paul @Busdriver60, there are a number of different ways people arrive at a T3c diagnosis; for most of us its a big shock, unexpected etc. Just sometimes someone might have had pancreatic surgery a while ago (or in that region, which affected their pancreas) and might have been forewarned that T3c was highly likely in years to come. If you would like to tell us a little more about what brought you here today, we can better share our experiences.

Meanwhile a few useful things you might not already know:

T3c is a very rare form of diabetes. Roughly 90% of diabetes diagnoses are for T2s; almost 10% are for T1s; the rest (including T3cs) are less than 1%. So we are very special!​
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T2s broadly have a high degree of insulin resistance, unable to make full use of the insulin they do produce so while they make their own insulin they end up with elevated BG and need help (a mix of diet control, exercise and even extra injected insulin) to keep them selves in a medically safe state.​
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T1s have an autoimmune condition that destroys their insulin making capability. So they need injected insulin to stay alive, if not immediately always eventually and they live knowing that without their insulin their life expectancy is very short!​
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All the other types have elevated BG, because their insulin production is impaired for a range of other reasons. We T3cs experience damage to our pancreas which is an identifiable reason for our diabetes. My "damage" came from a total pancreatectomy, removing every last bit to give me respite from my Pancreatic Cancer (PC). Others get physical pancreatic damage, eg from an accident. Many get pancreatic damage from another illness; such as pancreatitis, or steroid treatments that have chemically damaged their panc'y and some even from sustained excessive alcohol. So within our tiny T3c community there are various causes and that means we need a variety of different ways for managing our D. I take Multiple Daily Injections (MDI) and in some ways I am as if T1 - but I'm not T1.​
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The cause of your diabetes leads to a diagnosis; not the type of treatment. I don't have the autoimmune condition so I can't be diagnosed T1. I also don't have abnormally high insulin resistance (so can't be diagnosed T2). My treatment is MDI. Some T3cs are treated with only oral medications and may, or may not, end up needing insulin. Most T2s use diet restraints, exercise and sometimes oral meds; some T2s also need injected insulin as well. It can be confusing - the diagnosis label doesn't tell the full story.​
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You could reasonably say the diagnosis label tells very little: we each have a mix of letters and nos, except Gestational Diabetes - which is invariably temporary.​
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Because T3cs are rare, many Health Care Professionals (HCPs) have a very poor understanding of what T3c is, never mind how tricky it's treatment can sometimes be. We have to be ready to work through things, despite an HCP getting some aspects wrong!​
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Enough from me for now. We look forward to hearing more from you when you are ready. There is a wealth of experience, knowledge and willingness to share what we know from people on this Forum. There is also a load of rubbish, nonsense and misleading stuff available from the internet; including information from overseas sites. It helps at this stage to stay on UK websites, because overseas knowledge might well be perfectly correct but if its not part of what the NHS accepts, treats and generally supports there is at this stage little point in getting distracted by it.​
 
Hello Barbara
Yes, and thank you for your lovely welcome about 3 weeks ago, I asked to attend a health checkup at my GP surgery, as turned 60 years old last month.
I had a routine blood test and had it sent off to the lab. When the results came back a week later, it was discovered, my blood sugar levels were very high. So, my GP phoned me urgently to ask to attend the surgery asap. He was very concerned I had diabetes, so he sent me to hospital for more blood tests, where it was confirmed, I indeed had the condition. Luckily, type 1 was ruled out, but the doctors and nurses were trying to find if it whether its type 2 or 3c.
Although, its not yet confirmed, they are about 75% sure, that it is type 3c. I Should know in about 2 months, as my condition is being investigated. Last year, I had to be treated for pancreatitis. Part of my pancreas had been damaged and a stent had to fitted. As part of my recovery I was put on creon for life. So now, I understand my pancreas can no longer insulin which is has led to my diabetes. Even when I learned I had the condition, I was extremely upset and shocked.
I am still trying to come to terms with it. I had to resign from driving job (coach driving) and surrender my PCV licence.
I'm not sure, when or if I will return to work, as I don't the like idea of pricking my finger every 2 hours before I drive.
I think I will have a complete change of job, when I feel ready.
Thats my story so far........
 
Martin, sorry I was meant to thank you for welcoming me into group.
 
Hello again Paul, seen your reply. How are you doing right now? Are you temporarily using carbohydrate control to help your body cope at present? Plenty of help and advice on that if needed from many forum members, using slightly different techniques. Exercise and activity is also a great help, along with weight control should you need that. Has anyone explained anything about carb counting? This will be fundamental for you no matter what your final diagnosis becomes.

[Incidentally, my non-medical opinion is that T3c is inevitable and with that diagnosis other, better, treatment options and medical support will become available to you].
 
Not sure, but I would like to know more about carb counting.
Every Tuesday and Wednesday evening, I go to my karate club, so keep very active, while practicing at home. I am a yellow and going for my green belt grading next month.
 
Really sorry to hear that your diagnosis has impacted your job situation. Finger pricking is in itself no big deal for most of us who are insulin dependent but I understand the whole situation is tough to get your head around at first as there is so much to learn and generally you would need to gather 3 months of testing data before reapplying for your PCV licence, but to be honest you probably need that 3 months to get the hang of the basics.

It is great to hear that they have given good consideration to what type of diabetes you have. Sadly many of us mature adults who developed diabetes later in life are just assumed to be Type 2 and it can take months or years to get a correct diagnosis. A number of people come to this forum with what are obvious misdiagnoses to the more experienced members here, but have great difficulty getting their health care professionals to reconsider their case. It can make a big difference to their support and treatment and the technology they have access to, in getting the correct diagnosis, so it is a breath of fresh air to hear that your case has genuinely been considered.

Which insulins have they started you on and how are you managing with the Creon?
Do you have a Libre or other CGM to monitor your levels and do you understand the limitations of CGM and when to double check with finger pricks? We have t thread about the limitations of Libre and other CGM here....
forum.diabetes.org.uk

CGM limitations and precautions

Moderator Note: This helpful reply was copied from another thread as it details some of the commonly experienced limitations of continuous glucose sensors. My blood sugar has been in perfect range for days now, but although I haven't changed anything, I'm starting to get very short periods of...
forum.diabetes.org.uk forum.diabetes.org.uk

If you have any questions or queries about anything no matter how basic or you don't understand anything, please feel free to ask.
 
Things are still new to me and still learning what things are what, if you know what I mean ha ha! :rofl:
yes certainly I will ask away about anything I'm not sure about.
 
One thing I will have to get used to, are Needles! I've had a needle phobia all my life and a very bad experience when I was 6 years old. My skin was so tough, the injection wouldn't go through the skin and when it did it really hurt!
 
Stretching or pinching the skin helps the needle to glide through more easily. I find that using my finger and thumb of one hand pressed onto the site and pushed apart makes the skin more taut and the needle then slips through more easily. If you are slim then it can help to pinch the flesh that you are injecting into but that also makes the skin taut and allows the needle to go through more easily. We have a few members who have had to overcome needle phobia. I think @Inka may be one of them.
 
Busdriver60 said:
Things are still new to me and still learning what things are what, if you know what I mean ha ha! :rofl:
yes certainly I will ask away about anything I'm not sure about.
Click to expand...
Apologies if my use of the term CGM may have confused you. There is a whole new language to learn with diabetes as well as everything else 🙄 CGM = Constant Glucose Monitor..... the gadget (sensor) which is applied to your body, usually back of your arm and sends information about your glucose levels via bluetooth to a phone app or special reader/receiver. It enables us to monitor our levels every few minutes and provides data right through the night whilst we sleep and has alarms that we can set to detect if our levels are going too low or too high. If you are Type 3c and using insulin then you should qualify for them on prescription. They don't totally rule out finger pricking but they do reduce the number of finger pricks we need to do quite significantly.
 
Busdriver60 said:
One thing I will have to get used to, are Needles! I've had a needle phobia all my life and a very bad experience when I was 6 years old. My skin was so tough, the injection wouldn't go through the skin and when it did it really hurt!
Click to expand...

I have a needle phobia @Busdriver60 It was hard when I was first diagnosed, but I have ways to deal with it now. I still struggle with other people doing injections (eg vaccinations) and having blood taken is a challenge, but with the diabetes I’m in control doing the injection and it’s ok. Also, the needles for insulin are very tiny and very very thin. They’re nothing like the whacking great needles at the GPs. They’re more like the thinnest of hairs. They’re very different from the syringes I used when I was first diagnosed more than 30 years ago, and most of the time they hardly bother me now.

One thing to say - do ask about injection sites. It might be easier for you to start of using a body area you’re happier about using. For me, that’s my thighs.
 
Or what about injecting in your buttocks where you can't actually see the needle going in? Or there are covered needles which shield the needle from your view or the "Tickle Flex" device which supposedly kind of grabs/tickles the skin at the site whilst you inject and again, I don't think you see the needle with that. These might be things to ask your Diabetes Specialist Nurse about if you really struggle to inject.
 
Welcome to the forum @Busdriver60 - sorry you’ve had to resign your job :(

It is possibly to drive commercially with a diagnosis of insuln-dependent diabetes, though you do have to build up quite a stash of BG results over 3 months for review. The rules are much stricter too.

Driving just as an individual is much easier as long as your Dr is happy for you to drive, and you make the ‘preflight checks’ required by the DVLA :D

I’ll tag-in @soupdragon @Wendal @eggyg and @martindt1606 for a few more T3c experiences 🙂
 
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