Hi folks, possible T3c just saying hello

[Mr Happymoose]

Hi folks, just making my first post and introducing myself.

I have routine blood tests every three months (I've been on methotrexate for the last 12 years or so for a combination of Sarcoidosis and IgG4-related disease) as well as having some extra ones recently for a blood pressure issue. I got the phone call from the diabetic nurse last Tuesday informing me that the results had been passed to her as well and that I was diabetic. From what she was saying, they should have been passed to her over a year ago, but that's going to be another conversation.

I have my first appointment with the nurse next week so I've been doing some research and I'll be pushing for check to be made for type 3c as six years ago I had a chunk of my pancreas removed when I had Whipple surgery for a mis-diagnosed pancreatic cancer (Unfortunately the mis-diagnosis wasn't spotted until after the surgery) so if there's anything I need to know before the appointment, do please let me know.

The nurse freely admitted that she'd never come across a case like mine before and that she needed to get some more advice on my multiple weird and freaky conditions so I'm taking that as a good sign. Past experience means I just don't take that level of honesty for granted any more.

 

[Proud to be erratic]

Hello @Mr Happymoose and welcome to the Forum.

Taking your last point first, the incidence of T3c is tiny, and the definition for that diagnosis is muddled (I'll come back to that) so very few Health Care Professionals (HCPs) are even aware of there being a difference, some in denial about that difference and some just locked into what they know currently unwilling to adapt as medical knowledge progresses.

I had a Whipple in Feb '20 and was discharged from a hospital leading in such procedures with my paperwork declaring me as T1. On balance that helped - no HCP was in doubt that I was insulin dependent; one GP during Covid and involved with vaccinations was surprised when I told her I had no panc'y and asked if I was born like that. But I've robustly pushed all barriers to keep my status as T3c in the forefront of my medical history. I think its important that any HCP recognises that the majority of T3cs have some underlying reason for being diabetic and frequently those medical reasons sit in contradiction of more normal diabetes treatments making managing T3c just that little bit more difficult.

Moving forward, sorry to hear that your partial Whipple turned out to be unneccessary. The survival rate from PC is poor and the diagnostic markers are ambiguous (my PC was only confirmed as PC after the total panc'y from the histology, the symptoms looked like PC to the HPB team); I agreed in advance to a range of surgical options, so they could go "tumour hunting" regardless of whether benign or not.

How much to discuss will depend on what your HbA1c result is. Its possible to be T3c and treatment can be from oral meds, oral + basal insulin, or (as I am) full on Multiple Daily Injections (MDI) with minimal oral meds. And, of course, what symptoms you currently experience. Is your bowel activity reasonably straightforward? Do you need Creon, or an equivalent Pancreatic Enzyme Replacement Therapy (PERT)? Is your BG broadly coping at present, setting aside that you've now drifted into D territory? Presumably you don't have any BG test meter and strips, since until now you didn't know diabetes was in the mix!

Ask for (politely insist) that you are prescribed a test meter, strips and of course a finger pricker. Don't be surprised if your Practice have a policy of not providing this to anyone who is not actually insulin dependent; its partly because NICE Guidance doesn't wholly support this, partly because some T2 patients don't want the extra knowledge and are content to drift along oblivious to what is happening and partly because GPs don't want inquisitive patients asking tricky questions! Given both your pre-existing medical issues and now this Diabetes diagnosis it is essential that you have the means of seeing how your BG is behaving and consequently the ability to manage it. Exercise and activity can have a huge consequence on anyone's BG and with your impaired Pancreatic functions its essential that you can see in advance (within reasonable constraints) what is going on and respond accordingly. Try not to let the Surgery fob you off. Armed with test apparatus there needs to be an organised process of testing and here on the Forum we can offer our knowledge about how, when, etc for you to choose what you want to do.

The other main point from me is to insist you are promptly referred to a Consultant. Either back to the Team who did your Whipples or an experienced Endocrinology Team. Where, will depend in what part of UK you live in. Some regions have centres of D expertise, others less so. How far would you be happy to travel, etc.

I need to pause here, got an appointment. But I'll say a little more later depending on what others have to say. I'm tagging some of the regular T3cs who contribute to the Forum, @Wendal, @soupdragon , @eggyg. They will mostly want to know your present status, ie what is your current HbA1c; if your Surgery won't tell you before you see the Nurse (this still happens) insist and go to that appointment fully informed. If you edited your post title to add "probable T3c" that might catch the attention of others in this select club.

This link from the opening segment of the Forum might help you.

What is type 3c diabetes?

You may have heard of the more common types of diabetes like type 1, type 2 and gestational. But there are actually many other types of diabetes that aren't as well known. Type 3c diabetes develops because of damage to the pancreas, which can happen for a few different reasons. And although...

forum.diabetes.org.uk

 

[Mr Happymoose]

Many thanks for the info @Proud to be erratic.

I've become more and more aware of just how rare 3c is, but given the history and the possibility of other symptoms being masked by the side effects of the whipple, taking methotrexate regularly as well as all the other meds I'm on such as blood pressure, a large dose of creon etc, it's definitely something I'll be (respectfully) pushing hard for.

When I was discharged after the whipple in 2018, I was told I wasn't showing as diabetic, but that I would almost inevitably develop in in future years so in a way, getting this diagnosis has been a bit of a relief if that doesn't sound weird. I'm no longer wondering when that particular crisis will hit. Thankfully it's been caught before developing in to a crisis, but there has been a definite lack of management for the last few years that will also be discussed. The whipple is also another long, sordid story which I probably shouldn't start to go into here, that would definitely bring on a bit of a rant 🙄

My last blood test on the 7th May gave an HbA1c of 76 mmol/mol and at the moment I'm on Creon 25000 taking 4 - 6 for a light meal, 8 - 10 for a normal meal and as required for snacks and that sort of thing. Getting my diet sorted out is going to be a biggy as I can go through long periods of not being able to eat due to either nausea or simply having no appetite and any attempt to force myself to eat causes even more nausea.

When the nurse phoned the other day I did ask about being referred to a hospital clinic and the nurse seemed to think that wasn't entirely necessary. I'm not sure I'm entirely happy with that, but I'll shelve that one for now until I get to see just how competent the nurse is and how willing she is to listen to me. I have other options to get a referral to the hospital if I feel I need it through other consultants I'm under so that's not too much of an issue. If I can stay locally I'd like to as we live out in the sticks a bit and getting to either of our local hospitals is a bit of a pain.

 

[Proud to be erratic]

Briefly, for now:
Because you have a significant recent HBa1C of 76, I would, and bear in mind I'm not medically qualified and the rules of this very gentle Forum discourage us from pressing someone to do something or giving medical advice, I would for now treat myself as T2 and promptly review my carb intake. I support the excellent guidance that @Leadinglights offers T2s: go low carb, which does NOT mean no carb. How low depends on how much you typically eat today; 130 gm daily is a suggested low threshold, but people do go a fair bit lower.

I make this suggestion because highish BG is harmful to you anatomically over time and many of us find we just feel below par when running constantly high. Changing your dietary habits straightaway is a good initial 1st step. Should a decision be made to move you onto full MDI then you ought to be able to cease low carb and pretty well eat what you want, using insulin to offset whatever carb intake you choose. Meanwhile your change now won't alter the current status or influence any treatment decision downstream.

Be aware that abrupt changes are not good either, can affect fine nerve endings amongst other things. Also if your BG has been high for a while your eyes change shape slightly with the changed salinity and restoration of normal BG can bring about blurred vision and/or altered eyesight prescriptions.

So don't panic into dietary changes, just start the process and take the opportunity to become much more carb aware, looking at the nutrition details in small print on the backs of packages, using the Internet to look on your regular supermarket's website for nutrition details or buy a copy of the carbs and cals book (along with a pad of mini post-it notes). Carbs and Cals do have an app; I used it for a year, it's expensive and not very convenient and I don't recommend it. Also you'll need a decent set of digital kitchen scales that are reasonably accurate for small amounts and allow yourself to get into the habit of weighing and measuring. As well as my scales always being on the kitchen work surface I have a small no of "my standard measures" for things I regularly choose to eat and know that my standard teaspoon, desert spoon, table spoon and my standard cup when full and flat yield a reasonably fixed amount of carbs! It's not rocket science, but does make gauging carbs in any one food item a simple and NOT so stressful task.

You will need to carb count (estimate) for evermore as part of managing your D and the simpler you can make this the better (easier) it all becomes. At first it all seems pretty daunting and can be frustrating, but with time your eyes and brain will instinctively tell you what the carb content is of most things you intend to eat. If you are not taking insulin then the carb count helps you make food choices that suit your metabolism. If you are taking insulin the carb count allows you to take the correct dose and then eat at least enough for the insulin taken to prevent you going hypoglycaemic. Going too high is a nuisance but totally resolvable; going too low and hypo can be dangerous, impairs your decision making competence and can lead to unconciousness or worse.

Glad you've got the measure of Creon taking. My needs do vary with what I'm eating and the weather; I know when I've underdosed!

I completely understand your wish to get the measure of your Surgery Nurse; a friend within the Practice Team can only be helpful. Before we moved from Bucks to Berks I had a terrific amount of help from the Practice Nurse; she quickly accepted that I was managing well and I knew what needed changing medically when necessary. It is difficult for the Patient and any HCP, because the reality is that a T3c quite quickly becomes more knowledgeable than almost any HCP.

All for just now.

 

[Mr Happymoose]

Again, thanks for the info @Proud to be erratic. I have started looking at what I'm eating and what probably needs to change but as the nurse didn't seem to be overly concerned, I'm definitely not rushing in to anything until I've seen her. I must admit, I'm a little concerned about the eye sight thing though as I literally bought new specs with a new prescription a couple of months ago and that's another expense I could do without!!

We're used to keeping an eye on packet labels when we're buying food as my other half is gluten intolerant so that sort of thing is mostly second nature these days and as for creon, it's the bane of my life really. Like you, I definitely know if I haven't had enough, but sometimes it just feels like it's never enough. As well as the cardiology investigation going on at the moment because my BP wont come down despite the bucket load of BP meds I'm on (Note to self, check correlation between D and BP) there's also an ongoing gastro investigation to try and work out why I constantly have an upset stomach these days. Given how long the nurse said that the levels have been rising, I do wonder how many of my problems over the last year or two have actually be caused by D.

I think by now, most of the practice staff have accepted that I probably know more about my conditions than they do and as well as that, I have a few consultants from the hospital on speed dial When I was first diagnosed with Sarcoidosis 15 years ago, I quickly learnt that even when talking to a consultant it was crucial that I educated myself in what was occurring and advocating for myself. There's been more than one instance where I've had to put my foot down when I don't believe something is correct so I have no problems with standing up to HCPs and 'gently' persuading them to take a different path if I have to.

 

[everydayupsanddowns]

Welcome to the forum @Mr Happymoose 🙂

I’m sure you’ll have seen this already, but just in case you havent:

What is type 3c diabetes?

You may have heard of the more common types of diabetes like type 1, type 2 and gestational. But there are actually many other types of diabetes that aren't as well known. Type 3c diabetes develops because of the damage to the pancreas, which can happen for a few different reasons. And although...

www.diabetes.org.uk

Hope your nausea begins to settle down soon, that sounds very difficult for you

Let us know how the appointment goes 🙂