I agree. Must do better. Trouble is, as you know only too well
@JamietDE6 when someone lies both as T1 and T2 OR neither is clear (hence you describing yourself as other type) - there are numerous contradictions to follow up.
For the short version I can only relay my experience. I recently had a scan that revealed a “patchy” pancreas image. This is yet to be assessed by the endo consultant that I have yet to ever meet, speak or communicate with and they seem reluctant to do so. I am waiting for a response. My GP suspects pancreatitis may have been a factor.
The result of your scan could be interesting to others, as well as yourself, I think. What made your GP suspect pancreatitis could be an issue? Had you had symptoms in the far or recent past?
While both you and
@Jas_99 came to Diabetes in early 2023 and are sharing similar sorts of confusion about type of D, there has been no hint from
@Jas_99 of prior panc'y problems. Her original symptoms as presented in her low 20s did fit a T1 diagnosis before her test results overturned that presentation and her high insulin needs do fit with high insulin resistance.
I am told by others on the forum that it can be related to type 3c such as cysts or other abnormalities.
Yes, that could be appropriate. Currently the Type of Diabetes is attributed from symptoms and thus diagnosis. I am increasingly realising that, for a few people at least, little is black and white in D Type attributions.
The T3 categories essentially emerged from a Symposium in the States (pre Covid) where attendees were recognising that some forms of D were clearly not T1 with autoimmune symptoms, nor T2 with insulin production but excessive insulin resistance. Some people had become diabetic because of other circumstances; not just pancreatitis, but from steroids essential for AN Other ailment, or alcohol damage, or as in my case surgical removal to defeat the cancerous tumour strangling my panc'y; and so on leading to a lengthy list of circumstances where that co-morbidity could even need treatment that sat in contradiction to normal diabetes treatment (eg steroids). T3 types are a very small proportion of the total no of Ds in UK and the T3 attributions are gradually becoming accepted in NHS parlance - but essentially sit as special (or what feels like "odd-ball") cases.
If it were not for the pretty ridiculous idea in UK that only T1s are entitled to CGM, then the Type attribution would be far less important. If all insulin dependent Ds were entitled to be considered for CGM on prescription, then I personally wouldn't care a jot what attribution I was given. As it happens after surgery I was discharged "as T1" which meant I was able to cajole various HCPs to step up and provide the care I needed, including CGM.
My challenge was in finding out how to wade through the treacle or blatant obfuscation of what was available to help me. This forum has been a Godsend for that. After 10 months of fp only I found myself wrestling with my GP who arbitrarily cut my test strips to 4 x daily, ignorant to the consequence that I could no longer properly manage my panc'y-less state nor meet the DVLA driving requirements. Even more extraordinarily my GP was supported in that decision by my Hospital based DSN - who was turning out to be a delightful human being but totally incompetent D Specialist. I was able to transfer to a noticeably more competent Hospital, thankfully.
I don’t know my type as the consultant won’t confirm it. I am currently on Metformin plus low carb but often BG will be out of range so may end up back on insulin.
Having speed-read back into your story since Feb 23 I can see that you have had a confusing and contradictory process of arriving at "other type". I can also be a bit dispassionate and see that while there is another question hanging around (scaan for pancreatitis damage) you will continue to be in limbo to get that definitive diagnosis.
My take home message is it’s up to us to monitor the condition and press for help when needed.
I absolutely agree with your message. We have to take ownership and be our own advocates for help and treatment. But most of the time how to do that is far from clear and (being generous) the overstretched NHS seems intent on keeping that clarity away from patients.
I started off being classed as possible T1 and was on insulin - I got lots of help. Now I am partially responding to T2 treatment it seems you are left to your own devices. Having said that injecting up to 6 times a day is no fun.
I also agree Multiple Daily Injections (MDI) is not much fun. I'm lucky enough to know my panc'y just had to go (loads of cancerous nodes within the tumour) and I'm still alive - thanks to MDI. CGM gives an amazing insight and a great help in reducing the stress of MDI. I know this from my 1st year on MDI without CGM. (How did I survive? A daily roller-coaster of hypo to hyper and back.)
Trying to see this from
@Jas_99's perspective her "other type" does seem to indicate considerable insulin resistance which, to my non-medical view, is a fair bit different to yourself
@JamietDE6. What does seem unusual is for that to be so at age 24. But perhaps this is a consequence of 21st century norms, in comparison to my background born in 1949. We keep hearing about processed foods being questionable - they are hard to avoid today and they are also clearly convenient.
Finding a path forward will be challenging for
@Jas_99. Personally I wouldn't trust the HCPs I originally had to truly help me. I was parked to be treated as an infirm OAP; with 5 or 6 co-morbidities. I had to fight that and make my own way forward - which started with finding out what existed, then how to get it while concurrently informing and co-ordinating those 5 or 6 Consultants.
Sorry, too long again!
