Am I Wasting My Time?

Status
Not open for further replies.
Duane Charles

Duane Charles

Well-Known Member
Relationship to Diabetes
Type 2
Pronouns
He/Him
I have just come out of an appointment with a DN, whom I’ve never seen before.
  • They’ve upped my Metformin to 4 a day.
  • I’ve to start vitamin D (been low for 2 years).
  • Thyroid is fine as is vitamin B12.
  • Refused C-Peptide (as not relevant at the moment).
  • Refused CT Scan (pancreas might not be visible).
  • Retinopathy Scan wasn’t copied to the surgery, only the hospital.
  • One of the meds I was given has a contra for causing pancreatitis, can’t say I was impressed by hearing that.
  • Next HBA1C on Jan 19
  • Lost 4Kg (how careless)
Feel like I want to bang my head against a wall and stuff my face full of carbs and sugar!!!
 
Can totally understand your frustration and unfortunately many people are in a similar situation and have (or had) to keep chipping away at the system. Take the medication manage their diet as well as they can and raise the issues again at the next appointment. I think @eggyg had to battle for about 8 years to have her diagnosis changed to Type 3c and get the treatment and support she needed. Things are improving but it takes time for knowledge and old approaches to be changed and at this time of year going into the holiday period when the NHS is struggling, they would be very unlikely to make any "rash" decisions about alternative treatment in case anything went wrong when there is minimal cover. So for instance, they would not want to start you on insulin now as we have so many days over the next couple of weeks when there would be no support.
Ideally you want the C-pep test authorized by a specialist. I am sure that you are currently producing a low to moderate amount of insulin and a GP or nurse would likely view this as evidence that you don't need insulin and that you are Type 2. A consultant with more experience would look at that result along with your history and quite possibly be happy to say you are Type 3c. The GP or nurse simply don't have the knowledge to make that call and unfortunately you are in no mans land with your diabetes because it isn't so bad that it waves red flags that say something is very seriously wrong, but it isn't great either which makes it look a lot like Type 2. It isn't so much that there is a definitive test that will give you a diagnosis but how your circumstances are interpreted, but someone who understands them.
I think your best course of action may be to push for a referral to the diabetes consultant at your next appointment rather than pushing for the tests themselves and in the meantime, do the best you can to follow their guidance as much as possible.
 
Hi Duane,
Sorry about your experience today but as Barbara said it can take time and then everything changes.
I am lucky in that my GP did not argue with my suggestion of being 3c and in fairness given my history it was fairly obvious.
The way medical professionals make decisions is by a series of diagnostic confirmation/ exclusion steps in an algorithmic sequence so the starting point is crucial in terms of deciding on the nature of your condition.
I was put on insulin straight away given my hba1c score but I could be treated with Metaformin but am managing fine on the insulin.
Really hope you make some progress and never be afraid to challenge the health professionals but helps if you understand the full nature of your condition and why you think you may be misdiagnosed.
 
rebrascora said:
Can totally understand your frustration and unfortunately many people are in a similar situation and have (or had) to keep chipping away at the system. Take the medication manage their diet as well as they can and raise the issues again at the next appointment. I think @eggyg had to battle for about 8 years to have her diagnosis changed to Type 3c and get the treatment and support she needed. Things are improving but it takes time for knowledge and old approaches to be changed and at this time of year going into the holiday period when the NHS is struggling, they would be very unlikely to make any "rash" decisions about alternative treatment in case anything went wrong when there is minimal cover. So for instance, they would not want to start you on insulin now as we have so many days over the next couple of weeks when there would be no support.
Ideally you want the C-pep test authorized by a specialist. I am sure that you are currently producing a low to moderate amount of insulin and a GP or nurse would likely view this as evidence that you don't need insulin and that you are Type 2. A consultant with more experience would look at that result along with your history and quite possibly be happy to say you are Type 3c. The GP or nurse simply don't have the knowledge to make that call and unfortunately you are in no mans land with your diabetes because it isn't so bad that it waves red flags that say something is very seriously wrong, but it isn't great either which makes it look a lot like Type 2. It isn't so much that there is a definitive test that will give you a diagnosis but how your circumstances are interpreted, but someone who understands them.
I think your best course of action may be to push for a referral to the diabetes consultant at your next appointment rather than pushing for the tests themselves and in the meantime, do the best you can to follow their guidance as much as possible.
Click to expand...
Thank you @rebrascora for that reassurance, it’s only a few weeks until the next appointment. I think the DN was surprised that I had so many readings (2 sets a day). They even suggested only doing them in the morning. I’ll continue the readings from tomorrow morning and see where we go. They did mention carbs rather than sugar. At one point I did say that I feel like I should just give up and carry on as I did before they told me about D.
 
Wendal said:
Hi Duane,
Sorry about your experience today but as Barbara said it can take time and then everything changes.
I am lucky in that my GP did not argue with my suggestion of being 3c and in fairness given my history it was fairly obvious.
The way medical professionals make decisions is by a series of diagnostic confirmation/ exclusion steps in an algorithmic sequence so the starting point is crucial in terms of deciding on the nature of your condition.
I was put on insulin straight away given my hba1c score but I could be treated with Metaformin but am managing fine on the insulin.
Really hope you make some progress and never be afraid to challenge the health professionals but helps if you understand the full nature of your condition and why you think you may be misdiagnosed.
Click to expand...
They did mention insulin but that might have been to placate me and maybe even put me off as the DVLA also got mentioned in the conversation.
 
Yes, you have to inform DVLA when you start on insulin long term, and you go onto a 3 year medical licence, and you have to follow the DVLA guidance around testing and driving, to keep yourself and others safe, but there are many people here on insulin who manage to drive perfectly well within those guidelines. Yes, it is another hoop to jump through, but it just becomes another automatic routine, like putting your seat belt on, except that you need to give it a bit of thought about an hour before you are going to drive, just in case your levels are dropping low during that period. There are far more challenging issues with insulin than the driving restrictions.
 
I think I’d be lost not being able to drive, but that’s a long way off.

The other thing that was mentioned was my kidney function was dropping, not alarmingly. My blood pressure was steady as a rock at 120/80
 
Duane62 said:
I think I’d be lost not being able to drive, but that’s a long way off.
Click to expand...
Just as well you don't need to worry about it then 😉 even if you do need to start insulin! I too would be lost without being able to drive, especially as I live rurally. That is a big motivating factor for me in looking after my diabetes well and not just DVLA restrictions, but to keep my eyes healthy and the feeling in my feet good, as these things also impact the ability to drive. Managing my diabetes well is important to reduce the risk of damage to blood vessels and nerves in my eyes and feet and yes, kidneys too. Those are the things I consider when I am struggling a bit with my diet. Diabetes is not easy whatever type you have. You have to weigh up the important things and find a way that works for you. Knowing all the options and consequences are an important part of making that decision, but I really don't think that nurses should "threaten" people with insulin or suggest that they won't be able to drive if they use it.
 
rebrascora said:
I really don't think that nurses should "threaten" people with insulin or suggest that they won't be able to drive if they use it
Click to expand...
I don’t believe it was made as a threat, more of a “if you are put on insulin, you’ll need to inform the DVLA etc.
 
Duane62 said:
I don’t believe it was made as a threat, more of a “if you are put on insulin, you’ll need to inform the DVLA etc.
Click to expand...
Yes, I appreciate that in this case it wasn't a threat (maybe more of a discouragement) but it is certainly used as threat to some people by medical professionals. Insulin should not be taken without thought to all it entails and it certainly should not be considered an easy fix for anyone's diabetes, but when you need it, you need it, so the question at the moment is "Do you need it yet?" or will the increased Metformin and whatever other medication you have along with diet and some exercise, if you can manage to motivate yourself, work for you for now. Maybe we have stirred you up with talk of Type 3c when at the moment it doesn't make any difference. If you don't yet need insulin, then you manage with Type 2 medication which is what the nurse has prescribed and lifestyle changes, until your levels get to a point that insulin is necessary.
 
The DN saId ideally 7 prior to FOTF and then no higher than 11. My daily average for the past few weeks that I’d taken readings was 11.5 I showed them the readings taken and I think it threw them slightly.
 

Attachments

  • IMG_3785.jpeg
    IMG_3785.jpeg
    30.9 KB · Views: 3
Hi Duane,
I imagine everyone is initially concerned about the impact of diabetes in their wider life such as driving and I was the same as you and simply informed the DVLA as that was required.
They were so matter of fact and simply put me on the 3 year licence programme.
I was not comfortable driving for first 2 weeks after diagnosis due to being worried about going too low etc.
However, and due in large part by other’s experiences on here I gained confidence and now 4 months later I have just forgotten about it and happy to drive a 1000 miles a week which I regularly do now.
So it is all about just getting a better perspective on managing your condition and you will find that it really does not stop you from living a very normal life, yes with some adjustments especially at first but makes for a much happier life for yourself and those around you.
ATB
 
Status
Not open for further replies.
Back
Top