Remission?

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Sheppeyescapee

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I was diagnosed in 2020 with diabetes after having pancreatitis. Apart from the one result a few months after the admission to hospital with pancreatitis my A1c bloods have all been around 30-35. Latest A1c was 33. Been told by diabetes nurse that my diabetes is likely in remission and I can halve my Metformin with the aim of retesting bloods in 3 months and if all is good to come off them completely then. Since being diagnosed I've dropped 3.5 stones in weight and 6.5 stones in total from my highest.
 
Brilliant news!! Well done 🙂
 
Sheppeyescapee said:
I was diagnosed in 2020 with diabetes after having pancreatitis. Apart from the one result a few months after the admission to hospital with pancreatitis my A1c bloods have all been around 30-35. Latest A1c was 33. Been told by diabetes nurse that my diabetes is likely in remission and I can halve my Metformin with the aim of retesting bloods in 3 months and if all is good to come off them completely then. Since being diagnosed I've dropped 3.5 stones in weight and 6.5 stones in total from my highest.
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Well done. You really have taken this by the horns.
Keep us posted
 
That's an amazing achievement
 
Congratulations on a great result and best of luck maintaining it. I suspect it will be important not to "upset" your pancreas in whatever way you can to decrease the risk of another flare up but I accept that sometimes that is often beyond one's control. (My mother had 3 acute bouts of pancreatitis, so you have my greatest sympathies)

I wonder if technically you should be considered a Type 3c diabetic since your initial diagnosis stemmed from disease/inflammation of the pancreas.
 
Yes, very well done, @Sheppeyescapee.

I make no claim to understand the finer subtleties about "remission" or otherwise.

But I do think @rebrascora has a good point about whether you are T2 or T3c. I have now read back and seen your second posting in your first thread - so the ambiguity is there. If your D should return do make sure your full medical history is considered. Very good luck.
 
I've definitely had a lot going on and it's been difficult unpicking everything. The pancreatitis was triggered by high triglycerides. It's probably the most painful thing I've been through. The lipid clinic picked up Hyperlipoproteinemia(a) as well as high triglycerides. All cholesterol and trigs within the normal range with treatment now. Had a recent stay in hospital due to kidney stones which I'm going in to be treated soon and hopefully find out what's causing those.

I've had gastroparesis since 2014 which flares up but has been worse since the pancreatitis, when I had my gastric emptying test in 2016 we ran out of time and my stomach had only emptied 25% in 4hrs. I dread to think what the emptying time would be now.

From what I gather they either don't know about Type 3c or don't like to diagnose it here. Whenever I tried to bring up the possibility it got ignored or was told it wasn't a thing 🙄
 
Sheppeyescapee said:
From what I gather they either don't know about Type 3c or don't like to diagnose it here. Whenever I tried to bring up the possibility it got ignored or was told it wasn't a thing 🙄
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Unfortunately @eggyg had the same experience. There do seem to be a number of HCPs who haven’t yet come across the term.
 
My perspective is that after my total panc'y I was discharged from Hospital officially diagnosed as T1. It was this forum (thanks @everydayupsanddowns) that drew my attention to the existence of T3c. I'd had major surgery (a Whipple's procedure) and was healing and generally in recovery from that; I was awaiting chemo (which made me particularly poorly); and I was generally struggling with managing my D (on the roller-coaster of endless high/low/highs) with very evident bowel issues, clearly not properly digesting my food (despite my Creon regime) and I had constant urology challenges. All this while Covid lockdown was preventing any face to face dialogue and I didn't know how the medical system worked, let alone how to correctly articulate my different medical problems.

So the existence of T3c, ie something in contrast to T1, made complete sense to me. I didn't have an auto-immune condition; I had no pancreas and none of the other pancreatic functionalities (ie various hormones other than insulin were also missing); and generally I had 5 other ailments as well as my diabetes, all making my daily existence challenging - to say the least. I'd lost my older brother 2 months previously, who was a double amputee of both legs from his own mis-managed T2 and while very grateful to still be alive, there were brief moments when I felt abandoned and mentally challenged.

I have challenged every HCP who has tried to tell me that T3c doesn't exist by asking each one to explain to me in simple terms what type of diabetes can be diagnosed from not being insulin resistant and from not having an autoimmune condition. Some have conceded there and then that T3c is a sensible 3rd type, albeit not frequently encountered; and some have simply said well consider yourself "as if T1". To those latter HCPs I have always reiterated my challenge and rather more strongly (perhaps a bit rudely) asked them to stop and think, to use their very able brains and to accept that if diabetes is diagnosed "according to its cause" how can diabetes from any pancreatic damage (minor or total) be simply categorised as T1 or T2?

Anyway @Sheppeyescapee, I am truly happy for you that you have made such great progress and generally are now doing OK. But I reiterate, from my non-medical status, that if your problems return do try to make any doubting HCP consider your full medical picture and take account of the possibility that your D is connected to your former panc'y damage and that your diagnosis as T2 must be reconsidered including a referral to an appropriate specialist. I wholly agree with you that it is difficult "trying to unpick everything" and I felt it was pretty unreasonable that the onus fell on me to point out that a wholistic view was needed of my various ailments and that I needed help - not platitudes in phone conversations.

I had learnt from before my diagnosis of pancreatic cancer, that GP referrals were done without my ever seeing what was being asked for. After a referral for Urology in c.2015 that proved to be blatantly NOT what my real concern was and putting me with the wrong person at the wrong clinic, I'd asked after to see what had actually been written down - only to be told it could not be printed, because the request was inside the computer generated GP request and no longer accessible. Complete rubbish and worrying that apparently such a referral was no longer on my records. But from that I have always insisted that any referral or report from any HCP has a copy sent to me; ALWAYS. This has meant I can take some ownership and direction for my medical conditions. It doesn't mean I have total control, but at least I have a chance of spotting when a nonsense is about to happen and also see when conversations are erroneously documented (frighteningly frequently). I have found Consultants' secretaries are very helpful and the "dead zone" is in my GP Surgery, starting with Reception saying I don't think we can do that .... (or would I like to write in asking ...). I do not write in, but simply reply saying I'm talking to you now, please note this request and pass that to my GP; seems to work wonders.
 
Sheppeyescapee said:
I've definitely had a lot going on and it's been difficult unpicking everything. The pancreatitis was triggered by high triglycerides. It's probably the most painful thing I've been through. The lipid clinic picked up Hyperlipoproteinemia(a) as well as high triglycerides. All cholesterol and trigs within the normal range with treatment now. Had a recent stay in hospital due to kidney stones which I'm going in to be treated soon and hopefully find out what's causing those.

I've had gastroparesis since 2014 which flares up but has been worse since the pancreatitis, when I had my gastric emptying test in 2016 we ran out of time and my stomach had only emptied 25% in 4hrs. I dread to think what the emptying time would be now.

From what I gather they either don't know about Type 3c or don't like to diagnose it here. Whenever I tried to bring up the possibility it got ignored or was told it wasn't a thing 🙄
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Hi,
Would your gastroparesis prevent you from taking Ibruprofen? I have chronic pancreatitis with T3c and I'm able to to control the pain of an acute attack with 800mg Ibruprofen followed by 400mg every six hours for 48 hours. No other painkiller seems effective and I agree with you about the pain level.
 
First A1c completely off diabetes meds came back 38. However I've felt super rough in those months, repeated urinary infections, kidney stones, chronic fatigue. Had bloods taken for pre-op for surgery im having next week and they came back that I'm anaemic and my white blood cells and monocytes were incredibly low. :(
 
Sheppeyescapee said:
First A1c completely off diabetes meds came back 38. However I've felt super rough in those months, repeated urinary infections, kidney stones, chronic fatigue. Had bloods taken for pre-op for surgery im having next week and they came back that I'm anaemic and my white blood cells and monocytes were incredibly low. :(
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Wow, 38 though. Sorry to hear you have felt super rough. Do you/ the healthcare team think your anaemia, white blood cells and monocytes have anything to do with your HbA1c results?
 
NeoUser said:
Wow, 38 though. Sorry to hear you have felt super rough. Do you/ the healthcare team think your anaemia, white blood cells and monocytes have anything to do with your HbA1c results?
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I have a lot of health issues going on and it's difficult to figure out. I'm not sure what's causing the problems with the anaemia and low white blood cells/monocytes. I passed on the blood test results from the hospital to my GP and my GP barely looked/commented on them other than to say if the surgeon was concerned they would flag it up *shrugs*. I might flag it up again on an e-consult as they really were quite low, I'm currently on the waiting list for the me/CFS service but the wait is 18months long.
 
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