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Hi All
- Thread starter Withnail
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Proud to be erratic
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Hello again @Withnail. Like others I'm so pleased for you with this everything clear result.
Solely from curiosity, when you say the results came back on your NHS app, I presume that meant the app had a narrative with a concluding comment declaring everything clear. But what exactly did the narrative include? For example were there associated blood tests, with results? Or was the narrative a lengthy description of precisely what was seen, section by section as the scan progressed? Perhaps the app gave a live digital link to a Consultant's report?
I'm curious, since I've had various CT scans over the last almost 6 yrs, including one earlier this month. I've once been given a link to a video that I could view from a PC by downloading some software; in truth that was as clear as mud to me! The rest have each been discussed with me by different Consultants from different Hospital Department, (usually Surgical, Oncology or Gastroenterology departments) followed by a written report addressed to myself and my GP. None have come from my NHS app and usually my app includes a reference to a document which in turn refers to that report. But that reference is a title (of sorts) that is not digitally active and only (apparently) accessible by my GP or the Hospital. I find this app functionality all pretty unsatisfactory, wasteful really; but that is a digression probably reflecting the post code lottery of how local GP Surgeries document patient information along with the varied levels of patient access within NHS England.
Please excuse my asking all of this, I don't wish to cause any possible alarm, just wish to satisfy my own curiousity about how a CT scan leads to a diagnostic outcome of everything clear. In a way, simply who has looked at what?
I do know that my Pancreatic Cancer (PC) was not revealed by either blood tests or a specific scan. My scan revealed an unknown mass surrounding my pancreas, which along with physical symptoms of jaundice, was interpreted by a Consultant from the Hepato-Pancreato-Biliary (HPB) department as possible PC. They also advised me that blood tests for PC markers were notoriously unreliable, as many false positives as false negatives. But the interpretations by HPB had proved to be sufficiently reliable to justify major intrusive surgery, confirmed by biopsy results (after the surgery!). Of course after my Surgery I was panc'yless and profoundly diabetic, hence my status as T3c.
Your scan obviously didn't reveal an unknown mass! Great relief.
@Proud to be erratic , sorry for the multiple posts im still figuring out the forum, that's how the results appear on my nhs app, I've had no contact with my GP since which I'm taking as a good sign, I've had no blood tests since my ac1, I suppose I'll hear back from the GP soon enough. I'm just presuming I'm clear by looking at the above images, ask whatever questions you like.
@Proud to be erratic you've been very detailed in your responses to me and I was on the move when I answered earlier rushing about. Here's a basic timeliness of the whole thing.
1. I went for a medical for work purposes and the doctor said my urine had high "sugars" wouldn't issue me the pass and advised going to the doctors
2. I contacted my GP who organised a blood test.
3. Visited my GP results were 81, she the said she had a suspicion I had pancreatic cancer because I was jaundiced and "didn't look like a type 2 diabetic because of my weight" and put me on the two week referral for a CT scan (This bit is quite annoying now as it put me and my wife through quite a bit of worry and stress for a couple of weeks)
4. I seen in my Nhs app a doctor from the hospital had said no need he cannot be jaundiced because his liver function is fine on his blood test results. GP reapplied for CT scan anyway
5. Visited a doctor in a hospital, appointment came in the post, who reassured me my chances of cancer were low, and the GPs in general had been flooding the system with newly diagnosed diabetics with normal/lower BMIs. She said after possibility of type 1 or type 2 and she said it would be looked into after the scan
6. Xray on my chest ( no idea why) came in clear.
7. CT scan and the results above as you seen.
It's been quite the faff about, but I can't say nobody's had a look at me
1. I went for a medical for work purposes and the doctor said my urine had high "sugars" wouldn't issue me the pass and advised going to the doctors
2. I contacted my GP who organised a blood test.
3. Visited my GP results were 81, she the said she had a suspicion I had pancreatic cancer because I was jaundiced and "didn't look like a type 2 diabetic because of my weight" and put me on the two week referral for a CT scan (This bit is quite annoying now as it put me and my wife through quite a bit of worry and stress for a couple of weeks)
4. I seen in my Nhs app a doctor from the hospital had said no need he cannot be jaundiced because his liver function is fine on his blood test results. GP reapplied for CT scan anyway
5. Visited a doctor in a hospital, appointment came in the post, who reassured me my chances of cancer were low, and the GPs in general had been flooding the system with newly diagnosed diabetics with normal/lower BMIs. She said after possibility of type 1 or type 2 and she said it would be looked into after the scan
6. Xray on my chest ( no idea why) came in clear.
7. CT scan and the results above as you seen.
It's been quite the faff about, but I can't say nobody's had a look at me
Last edited:
Proud to be erratic
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Thank you, for both the scan details and your fuller explanation, providing context. I understand the stress about the 2 week wait; we waited 6 weeks between first being seen and a preliminary diagnosis. I was heavily jaundiced, very debilitated from a blocked bile duct and the NHS web page answered a question about blocked bile duct with a no nonsense PC diagnosis. No nicety or softening the response, straight in with PC and treatment options.
I've never seen so much detail from any of my CT scans (c. 15 since Dec 2019). I guess that says a fair bit about the lack of consistency in NHS practices. My situation is more complex, in that I used to live in Bucks and was sent to Oxford for my Whipples Procedure, then Oncolgy sponsored by Oxford but done in Bucks and initial Endocrinology from Bucks, but adopted by Oxford once it became clear that Bucks didn't know how to manage my pancy'less T3c. Then Trusts didn't trust, so data sharing digitally was blatantly poor. It seems that despite Integrated Care Systems Trusts still don't know how (or don't want) to share. Now I'm in Berks. A recent Berks Urology Consult from my Berks GP ended up by being referred back to Bucks for review of the prostatectomy that seems to not be behaving properly. Not sure if this should reassure, or worry me! I've digressed.
Even without any feedback from your GP, that report is clear enough: nothing malignant! Well done to your GP for at least registering that your elevated BG was possibly unusual and eliminating one cause. Also this provides one clear answer to that query about what tests are possible to identify T3c.
So now T1 or T2? You've already heard that it would be normal for further blood tests for T1 antibodies and C-peptides. I know very little about these, other than members saying the results tend to take weeks, rather than days, for results from specialised lab testing. Sometimes those results sustain an ambiguous diagnosis, despite the time needed for that result.
The normal routes for T2 would be try and lose weight (not desirable for you), exercise more (not applicable to you) and cut back on carbohydrates (which are the easiest way for our metabolism to create BG). Plus, possibly oral meds. We know that insulin availability within one's BG is the key to allowing the transfer of glucose from one's blood into individual cells and thus organs and muscles. A significant factor with insulin availability is one's own natural insulin resistance; we all have a certain amount of that resistance: usually T2s have this resistance in spades and for those T2s most might naturally make loads of insulin but their metabolism simply can't cope because of high insulin resistance.
The conundrum is by going low (or lowish) carb might give you some respite for now but might also be masking the T1 reality and lead into an assumption that you are T2 and now managing. From your GP's response to date, this seems unlikely; but worth keeping it slightly in mind. Above all do document what changes you have or are making in respect of diet. Whatever you do, in case eventually T2, your lifestyle changes need to be sustainable for possible long term T2. Meanwhile how are you now getting on?
Incidentally a diabetic friendly diet doesn't exist as such. T2 needs different solutions to T1: for T1 (or full insulin dependency) we eat a normal healthy diet and take insulin to mitigate for the carbs being counted. No need to go low carb if T1, unless there are other medical reasons or that is simply what we choose to do.
I've never seen so much detail from any of my CT scans (c. 15 since Dec 2019). I guess that says a fair bit about the lack of consistency in NHS practices. My situation is more complex, in that I used to live in Bucks and was sent to Oxford for my Whipples Procedure, then Oncolgy sponsored by Oxford but done in Bucks and initial Endocrinology from Bucks, but adopted by Oxford once it became clear that Bucks didn't know how to manage my pancy'less T3c. Then Trusts didn't trust, so data sharing digitally was blatantly poor. It seems that despite Integrated Care Systems Trusts still don't know how (or don't want) to share. Now I'm in Berks. A recent Berks Urology Consult from my Berks GP ended up by being referred back to Bucks for review of the prostatectomy that seems to not be behaving properly. Not sure if this should reassure, or worry me! I've digressed.
Even without any feedback from your GP, that report is clear enough: nothing malignant! Well done to your GP for at least registering that your elevated BG was possibly unusual and eliminating one cause. Also this provides one clear answer to that query about what tests are possible to identify T3c.
So now T1 or T2? You've already heard that it would be normal for further blood tests for T1 antibodies and C-peptides. I know very little about these, other than members saying the results tend to take weeks, rather than days, for results from specialised lab testing. Sometimes those results sustain an ambiguous diagnosis, despite the time needed for that result.
There is a potential conundrum about diet. Right now you've previously described some of the classic consequences of periods of high BG. An Hba1c at 81mmol/mol, would leave almost anyone feeling well off par (ie like rubbish). This elevated BG can even lead to changing vision, because of increased salinity within the eye ball and a different shape. Naturally anyone, in the absence of a magical medication, would want to look for an "improved" or different diet as one way of getting to just feel better. Plus putting on weight.
The normal routes for T2 would be try and lose weight (not desirable for you), exercise more (not applicable to you) and cut back on carbohydrates (which are the easiest way for our metabolism to create BG). Plus, possibly oral meds. We know that insulin availability within one's BG is the key to allowing the transfer of glucose from one's blood into individual cells and thus organs and muscles. A significant factor with insulin availability is one's own natural insulin resistance; we all have a certain amount of that resistance: usually T2s have this resistance in spades and for those T2s most might naturally make loads of insulin but their metabolism simply can't cope because of high insulin resistance.
The conundrum is by going low (or lowish) carb might give you some respite for now but might also be masking the T1 reality and lead into an assumption that you are T2 and now managing. From your GP's response to date, this seems unlikely; but worth keeping it slightly in mind. Above all do document what changes you have or are making in respect of diet. Whatever you do, in case eventually T2, your lifestyle changes need to be sustainable for possible long term T2. Meanwhile how are you now getting on?
Incidentally a diabetic friendly diet doesn't exist as such. T2 needs different solutions to T1: for T1 (or full insulin dependency) we eat a normal healthy diet and take insulin to mitigate for the carbs being counted. No need to go low carb if T1, unless there are other medical reasons or that is simply what we choose to do.
trophywench
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So, Roland my lovely, what do you mean about your prostatectomy not behaving ?