Type 3c newbie

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Cornetlady

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Type 3c
Been diagnosed with type 3c after one stool sample test. I have no symptoms to EPI. Been put on insulin but blood sugars are still high. Have lots of pain on right side of stomach. Advised need urgent referral but it’s eight months to see specialist. So have been put on creon as well. I have hot flushes and feel unwell. I have pins and needles in hands and feet that I did not have before starting insulin, struggling with all of this . The insulin is supposed to lower my sugars but nothing working. It’s only been 14 days do I go back to drs or give a bit longer.
 
Cornetlady said:
Been diagnosed with type 3c after one stool sample test. I have no symptoms to EPI. Been put on insulin but blood sugars are still high. Have lots of pain on right side of stomach. Advised need urgent referral but it’s eight months to see specialist. So have been put on creon as well. I have hot flushes and feel unwell. I have pins and needles in hands and feet that I did not have before starting insulin, struggling with all of this . The insulin is supposed to lower my sugars but nothing working. It’s only been 14 days do I go back to drs or give a bit longer.
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I would go back to your doctor.
Other may be able to offer suggestions if you say what your HbA1C is and what insulins you are taking and what your dietary regime is.
The stool sample would likely be to check for EPI deficiency.
Type 3c is usually the diagnosis when there is damage or loss of the pancreas.
Have you had any scans to check for that.
 
Hba1c jumped from 61 to 81 and only just started on back ground insulin. Epi result was extremely low at 76 but no scans or been seen by hospital I was urgently referred but the hospital have 8 month wait list . On low fat low carb diet too.
 
Cornetlady said:
Hba1c jumped from 61 to 81 and only just started on back ground insulin. Epi result was extremely low at 76 but no scans or been seen by hospital I was urgently referred but the hospital have 8 month wait list . On low fat low carb diet too.
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If you can afford it then it might be worth paying for a private consultation with a gastro consultant, the initial consultation is about £200 but they will try to refer you back into the NHS for any tests but that usually happens more quickly.
I know we shouldn't have to do that but sometimes it is worth it for peace of mind.
Be careful with the low carb if taking insulin.
Do they think you have a problem with your pancreas to give you a 3c diagnosis.
 
Sorry to hear about your difficult start with type 3c @Cornetlady

Often people are started on quite conservative doses of insulin to reduce the risk of hypoglycaemia. In an ideal world you'd have follow-up contact with your Dr / nurse to help titrate/adjust the dose(s) and gradually bring your levels back towards a better range.

Have you been checking your own BG levels (you should have been given a meter and strips). What sort of levels are you seeing?

I’ll tag in some of our more experienced T3cs who may be able to offer hints and tips to reassure you

@eggyg @soupdragon @Proud to be erratic @martindt1606 @Wendal
 
Hello @Cornetlady,
Welcome to the forum and really sorry to read about your predicament. I'm slightly at a loss to know how I might move forward if I were in your situation - but on the face of what I can read I would say YES go back to your GP as soon as you can.

Firstly it's just not right to leave you in constant pain. Have any medications been suggested?

Secondly it's also not right for an Urgent referral to be deflected with an 8 month wait. That is a long way from "Urgent" response. Ask your GP if this is remotely correct? I suspect the triage system for evaluating your referral and allocating a priority has failed - human error somewhere in this bit of the process. Has your GP adequately explained the Urgency? My experience is that we "Patients" are excluded from seeing what is being said behind our backs in seeking referrals. It always was this way, historically, but since we have been entitled to see all correspondence about ourselves that right has been quietly ignored when it comes to digital referrals; we just don't get to see or be shown digital referrals. So:

I would first seek an assurance from my GP that the referral was actually suitably explained and the Urgency also explained.​
​
Then, assuming that start point was good, I would check that my GP knows that Urgency is still 8 months? Is there some further effort possible by the GP to get you seen much earlier; options might include a strong appeal by the GP and/or referral to a different Hospital (perhaps in a different Trust). The fairly recent (1 June 2022) creation of much larger regional integrated Care Boards may have created opportunities for a GP to find care at more locations.​
​
[I did a basic Google search under "ICB in Somerset" and that gave a selection of answers providing explanation about what the new ICB for Somerset should be providing and other useful information. I didn't persist in following up answers for you, but for my own regional ICB I can find details about the membership of the Board, including the Chairman and a possible name to ask how a delay of 8 months can be justified against Urgency? Something is wrong somewhere! I still suspect the triage process.]​
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I would also ask my GP about what he/she was expecting the newly prescribed insulin to be doing. I would be seeking a commitment from the Surgery to monitor and advise at least fortnightly on doses until some benefit and stability is apparent. Its just not good enough for a GP to prescribe insulin and provide no further follow-up. But given the T3c diagnosis (who did actually give this T3c diagnosis?) I would expect and prefer that T3c care that includes insulin is provided by a Hospital based team rather than my GP.​
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It would be helpful to know more about what background insulin has been prescribed and whether test strips and a meter have been provided? Once you get back to see your GP do let us know how you get on.
 
Ok everyone ended up in hospital with suspected pancreatitis, got a scan, no gall bladder issues or liver problems and much to the surprise of radiologists no problem visible with the pancreas. So yes I have tester etc. morning levels range from 5.5 to 8.5. 50 units of insulin now. 4 glicazide referral now advises july but no appointment. I also now have swollen feet and legs not had this before. Gp services say that I have to wait to be seen by specialist. So my question is that do I really have type three c.
 
With no damage to the pancreas and an insulin dose that suggests you have insulin resistance, it could be that you’re type 2. You’ll have to wait to see what the specialist says though.
 
Follow up. Spoken to Gp again as now have bowel issues that I didn’t have before. Just told to keep going as I am until seen by specialist, 55 units of back ground insulin and now gaining weight which I had previously lost. Upped the dog walk and now do thirty minutes each night on my exercise bike. I really am like a floundering fish with my Gp practice.
 
I really feel for you @Cornetlady and I'm afraid I'm still at a loss in what to say. I understand your comment about being like a floundering fish with your GP Surgery; I still feel a bit like that with both my formmer Surgery from before we moved and much the same today. I deal with this by firmly taking ownership of each malady and cajoling both the Surgery and the Consultant to help me when its needed. But this isn't easy and for a while was a full time job!

Certainly it may be that you are not definitively T3c. That diagnosis basically hinges around "damage to the pancreas" from whatever circumstance, creating the symptons of your diabetes - ie elevated BG. Who originally told you that you are or could be T3c? Can you get back to them in light of the scan and findings after your very recent hospitalisation and clarify what their considered position or diagnosis is now?

My predicament is that I am totally without a panc'y, I understand how to manage my T3c status using the Multiple Daily Insulin (MDI) process. I don't really understand how you juggle or co-ordinate a substantial basal insulin with oral medications. This needs others to offer their thoughts, methinks!

I can't spot from your responses exactly which background inulin you are on. But to my wholly non-medical opinion an increase to 55 units of basal seems a lot, but I could be very wrong with that view. 55 units suggests there is a presumption that you have considerable natural insulin resistance and thus more akin to T2. I guess only a Diabetes Specialist can clarify this line of reasoning.

Meanwhile bowel issues often arise for people taking the standard Metformin and can become resolved or at least improved by changing to slow release Metformin. Perhaps you should at least clarify to those following all of your predicament exactly what cocktail of oral meds you are on as well as naming the basal. There is a basal test that can be done to determine which part of the day is NOT getting benefit from your basal; but first we need to know what you take.

Sorry this is not overly helpful.
 
Actually in hindsight I should be suggesting that you need to get back to basics and progressively reduce your carb loading for all meals - since your current medication aren't doing their bit, it seems.

Also with 55 daily units of a basal insulin I ought to flag up the risk of unexpectedly going hypo, if one day that insulin really kicks in. Whereabouts in your body are you injecting your doses? Are you being careful about having good injection techniques? I ask as a routine precaution, rather than believing you possibly aren't!
 
Proud to be erratic said:
I really feel for you @Cornetlady and I'm afraid I'm still at a loss in what to say. I understand your comment about being like a floundering fish with your GP Surgery; I still feel a bit like that with both my formmer Surgery from before we moved and much the same today. I deal with this by firmly taking ownership of each malady and cajoling both the Surgery and the Consultant to help me when its needed. But this isn't easy and for a while was a full time job!

Certainly it may be that you are not definitively T3c. That diagnosis basically hinges around "damage to the pancreas" from whatever circumstance, creating the symptons of your diabetes - ie elevated BG. Who originally told you that you are or could be T3c? Can you get back to them in light of the scan and findings after your very recent hospitalisation and clarify what their considered position or diagnosis is now?

My predicament is that I am totally without a panc'y, I understand how to manage my T3c status using the Multiple Daily Insulin (MDI) process. I don't really understand how you juggle or co-ordinate a substantial basal insulin with oral medications. This needs others to offer their thoughts, methinks!

I can't spot from your responses exactly which background inulin you are on. But to my wholly non-medical opinion an increase to 55 units of basal seems a lot, but I could be very wrong with that view. 55 units suggests there is a presumption that you have considerable natural insulin resistance and thus more akin to T2. I guess only a Diabetes Specialist can clarify this line of reasoning.

Meanwhile bowel issues often arise for people taking the standard Metformin and can become resolved or at least improved by changing to slow release Metformin. Perhaps you should at least clarify to those following all of your predicament exactly what cocktail of oral meds you are on as well as naming the basal. There is a basal test that can be done to determine which part of the day is NOT getting benefit from your basal; but first we need to know what you take.

Sorry this is not overly helpful.
Click to expand...
 
Proud to be erratic said:
I really feel for you @Cornetlady and I'm afraid I'm still at a loss in what to say. I understand your comment about being like a floundering fish with your GP Surgery; I still feel a bit like that with both my formmer Surgery from before we moved and much the same today. I deal with this by firmly taking ownership of each malady and cajoling both the Surgery and the Consultant to help me when its needed. But this isn't easy and for a while was a full time job!

Certainly it may be that you are not definitively T3c. That diagnosis basically hinges around "damage to the pancreas" from whatever circumstance, creating the symptons of your diabetes - ie elevated BG. Who originally told you that you are or could be T3c? Can you get back to them in light of the scan and findings after your very recent hospitalisation and clarify what their considered position or diagnosis is now?

My predicament is that I am totally without a panc'y, I understand how to manage my T3c status using the Multiple Daily Insulin (MDI) process. I don't really understand how you juggle or co-ordinate a substantial basal insulin with oral medications. This needs others to offer their thoughts, methinks!

I can't spot from your responses exactly which background inulin you are on. But to my wholly non-medical opinion an increase to 55 units of basal seems a lot, but I could be very wrong with that view. 55 units suggests there is a presumption that you have considerable natural insulin resistance and thus more akin to T2. I guess only a Diabetes Specialist can clarify this line of reasoning.

Meanwhile bowel issues often arise for people taking the standard Metformin and can become resolved or at least improved by changing to slow release Metformin. Perhaps you should at least clarify to those following all of your predicament exactly what cocktail of oral meds you are on as well as naming the basal. There is a basal test that can be done to determine which part of the day is NOT getting benefit from your basal; but first we need to know what you take.

Sorry this is not overly helpful.
Click to expand...
I don’t take metaformin as I can’t tolerate it. I only take glicazide
 
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