I am new on here after being a type 1 for over 23 years and after doing some research through the links I can now identify myself as a autonomic neuropathist as I suffer with 80 per cent of complaints associated with this. Gastroparesis is the 1that I was researching and discovered 3 other medical complaints that I also suffer from and wondered how many others are affected by these. They are Gastroparesis Irregular heartbeat Gustatory which is sweating during or after eating and Impotence. The other 1 listed is an uncontrolled Bladder. All of these are caused by nerve damage which is my fault for being poorly controlled and beyond repair. Thank you for taking the time by reading this.
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AUTONOMIC NEUROPATHY
- Thread starter brooksy
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Inka
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It would be worth getting a formal diagnosis @brooksy if you haven’t already. There might be some treatments that can help. In the case of gastroparesis, there might also be dietary modifications and you might also be entitled to a pump, if you don’t already have one.
The irregular heartbeat needs looking at as there can be many causes of that.
The irregular heartbeat needs looking at as there can be many causes of that.
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Sorry to hear about your gastroparesis and other ailments @brooksy
One member here @AJLang has been successfully managing gastroparesis for several years with careful choices, dose timings, and an insulin pump - though I know it is very a challenging condition to manage.
There are some meds and dietary approaches that can be tried and which may help, but one of the main options seems to be to try to slow any further progress rather than look for improvements.
I think it would be good to get these extras diagnosed and investigated properly, to see if research suggests any treatments that might help you.
One member here @AJLang has been successfully managing gastroparesis for several years with careful choices, dose timings, and an insulin pump - though I know it is very a challenging condition to manage.
There are some meds and dietary approaches that can be tried and which may help, but one of the main options seems to be to try to slow any further progress rather than look for improvements.
I think it would be good to get these extras diagnosed and investigated properly, to see if research suggests any treatments that might help you.
Hello Inka and I have Been diagnosedwifh Gastroparesis Impotence and currently going through tests for the heart. Gustatory is my only personal diagnosis based on personal experience. I dont have a pump and yes I am entitled to 1 according to NICE and will now start hounding my medical professionals.
Hello and thanks for replying and Gastroparesis needs further research within our health system as after being diagnosed 4 years ago and only have recieved an anti sickness medication which sort of helps out when it flares up.The only extras that need to be confirmed are my heart for which I am currently undergoing tests and Gustatory is self medicated through research that I have conducted. Regarding the insulin pump that is something I need to start actively chasing up and according to NICE it seems that I am entitled to this. It has been a long battle so far and so glad that I have joined DiabetesUK which has provided so much information I also think that the current medical system needs to place flags on personal files which then creates links to other issues.
Garek
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I’ve had a few of the symptoms for years now. For a while I’ve been getting strange (delayed) blood glucose readings, so researched it only to discover gastroparesis and then autonomic neuropathy. Straight away I knew I had DAN, so booked a GP appointment and they said that yeah I’ve got it. Couldn’t believe that non of the other health professionals had figured it out as I’m diagnosed with a lot of the symptoms. I’m 49 and pretty active, but been treated as if I’m type 2 when I’m type 3c. Been asking them to put me on insulin for quite some time, but my DN didn’t want to listen. What’s worrying me is my GP just wants me to try metoclopramide for a while and see if that helps, if not he’ll see about getting me a referral. I’ve told him about issues that are clearly heart related, so surely it should be investigated? Anyway, I hope you’re being looked after and you get some relief from your symptoms.
Proud to be erratic
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@Garek, the question that leaps out at me from your one post - what caused your T3c? From the answer to that there is highly likely to be a route to allow you to challenge your T2 status rather than T3c, with clear emphasis on getting you a referral to a Specialist Hospital based Diabetes Team. Without dogmatically stating your GP is not suitably experienced from general practice to manage a patient with T3c, I will say that (in my non-medical opinion) this is at least very improbable.
After a little over 3 years in this situation I have met far too many Doctors and Consultants who were unaware of T3c and the obvious reality that damage to one's pancreas is neither T1 (autoimmune problem) nor T2 (insulin resistance) - and T3c invariably needs it's own discrete treatment. It is possible to be T3c and not insulin dependent, but unusual. But that still means that someone with T3c will inevitably have co-morbidities, which can well need treatments that can conflict with daily diabetes management. T3c can be more complex than meets first glance by a GP.
Garek
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Hi @Proud to be erratic, thanks for your reply and insights. Basically, around 12 years ago I suffered acute necrotising pancreatitis. 6 months in hospital with a stint in intensive care and major operation later, I left hospital being told my pancreas was partially dead and that I’d likely be diabetic in the future. I’ve been referred already to a hospital diabetes team after being diagnosed with chronic pancreatitis. During the first appointment they said they’d see me every 6 months, but that was about 2 years ago and I’ve not heard from them again. Since then I think my pancreas has given up the ghost, as I’m now completely insulin dependent. (Only recently been allowed to have long and rapid insulin).
I’m so disappointed with both the hospital diabetes team and my GP surgery. I’ve been asking my Diabetes Nurse to put me on insulin for months, but she kept saying “you’ll get fat if you go on insulin “. I’ve asked to be considered for CGM funding to help manage my diabetes, but the answer was always “No, you don’t qualify”. Now I have a Diabetic Autonomic Neuropathy with gastroparesis diagnosis (from the GP only at this point), it's clear why things have been so difficult. I’ve been trying so hard to keep things under control, and I’ve just been made to feel like it’s my fault, and been given very little help. Apologies, rant over.
Proud to be erratic
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Hi again @Garek,
Apologies not needed as far as I'm concerned. One of the virtues of this forum is that rants are fine and if they lead to someone helping someone else - then even better. But the rant helps all of us from time to time.
From what you say it seems to me that you still have 3 routes open to you to get this moving: your GP, again; the hospital D team; and the hospital that did your earlier panc'y surgery. I was floundering and ended up, slightly luckily, back at the HPB Dep't who did my original Whipples and I got the opportunity to tell the Consultant that my D management was poor and I had little faith in what was being offered so far. He offered to refer me to their in-house Diabetes, Endocrinology and Metabolism Dep't - even though I was in a different County. I said yes please and I've been brilliantly supported ever since.
You will have your own feeling for which route might be best.
If your GP .... I think I'd send an email a day or so before my next appointment (not too soon before) politely but clearly pointing out that panc'y damage = T3c and this is not T2 which = insulin resistance. So referral to a Hospital D team is essential, not just "nice to consider". Then you have the written basis for further discussion at rhat appointment.
Or contact the lapsed Hospital team and jog them along. One way of doing that is finding out the name of a Consultant (X), then getting their Secretary's name and email address; then write to that Sec'y, marking your letter for the attention of X. Tell X that you are in trouble, seem trapped in a wrong diagnosis, been waiting for a Consult for y months and now got additional problems, such as neuropathy.
Or track back to wherever you had the panc'y surgery and seek their help.
I suspect Covid and post Covid backlog has become part of your challenge and its now time to jog, cajole or more forcefully push the system to give YOU some attention.
The thing about a dead or near dead panc'y is not just the missing or flawed insulin production, it is the other flawed panc'y functions. Such as little or no glucagon hormone, or somatostatin hormone (balances insulin vs glucagon); plus dubious digestive enzymes production and of course vitamins A, D, E & K. Do you have a copy of your panc'y surgery "surgical report" which should tell you exactly what was altered or removed? That may provide you with some written evidence to give you further leverage.
Good luck @Garek, feel free to pm me or start your own thread which might catch the attention of other forum members in how you might get further help. Or try calling the Diabetes UK helpline (top of this page) and see if they have different ideas on how to get your diagnosis reviewed.
Apologies to @brooksy for this digression from your original post.
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