Struggling

[Chris Hobson]

"Unfortunately many GPs and nurses are under the misapprehension that Type 1 diabetes only exhibits in childhood and so, if you are an adult, they make an assumption that you are Type 2."

I suppose that I was fortunate in one sense in that I came down with a blood infection that landed me in hospital. It was then that I was diagnosed as diabetic at the age of 54. Fortunate in that I was then seen first by specialist doctors who, despite my age, thought that I could be type 1. This meant that I was put on insulin straight away and my recovery was really quite rapid. As I got better I had to keep reducing the doses until I got down to the smallest amount that the insulin pens would deliver and was still having hypos. I'm currently on diet and exercise only but have gone on and off taking linagliptin since coming off the insulin. Insulin does bring its own problems of course but I think that other commenters are correct that it ought to be tried at least.

Edited to add. It turned out that I am type 2 but for quite some time the specialist doctor said that he couldn't be certain. He talked about there being a honeymoon period when the insulin gives your pancreas a bit of a rest and it briefly starts to work again. He said that it would take about eighteen months to be sure. After nine years I think I'm fairly sure now.

 

[Courts]

Well, I am back on-line at the moment if you wish to chat.

Around 7:00, 7:30 (ish), I have to go and greet the new tourist arriving in Edinburgh and offer to give them a guided tour of "Un des plus anciens et vénérable chapeaux d'Édimbourg". I also need to remind those who are leaving that: "They no longer need their Scottish money and I have absolutely no objection to looking after it for them"

However, I will be back on-line around 2:00 (ish), and available for the rest of the day.


Think nothing of it, it's what the forum is for and the members are only too glad to lend a sympathetic ear.


This is definitely the place to start.

At the moment, you are actually in a kind of backwoods section of the forum, I suspect one of the administrators will probably move this thread into Newbies Say Hello Here! where you will get even more people stopping by to say hello and welcome you to the forum. But maybe not, I have no idea of the policy in this regard.

In general, there are a lot of sub forums, and, if you have specific question, then it is probably best to choose the one that is most appropriate. This would usually be the GeneralMessageboard, but choose whatever feels most comfortable to you.

I have added you to the list of people I am following. So, if you start a new thread I will get a notification. If I have nothing useful to contribute, I may not reply or reply only to give moral support. But, rest assured, I am following your progress. (If this is a problem, let me know and I will un-follow you 😉)

Irvine

That was super early to be awake! I am sure they would love to leave the remainder of the Scottish money left

I honestly had no clue which to select but will keep an eye on the newbies section! Honestly it is okay to follow too! My progress will be slow I am sure though so hopefully doesn’t bore you I found out today I have been taking the wrong dose of yaltformin which is always great. Was supposed to be on two twice a day not just two once

 

[Courts]

It was @sean_marsh I believe who was looking to connect with younger type 2s. X

Thank you x

 

[Courts]

"Unfortunately many GPs and nurses are under the misapprehension that Type 1 diabetes only exhibits in childhood and so, if you are an adult, they make an assumption that you are Type 2."

I suppose that I was fortunate in one sense in that I came down with a blood infection that landed me in hospital. It was then that I was diagnosed as diabetic at the age of 54. Fortunate in that I was then seen first by specialist doctors who, despite my age, thought that I could be type 1. This meant that I was put on insulin straight away and my recovery was really quite rapid. As I got better I had to keep reducing the doses until I got down to the smallest amount that the insulin pens would deliver and was still having hypos. I'm currently on diet and exercise only but have gone on and off taking linagliptin since coming off the insulin. Insulin does bring its own problems of course but I think that other commenters are correct that it ought to be tried at least.

Wow that was a late diagnosis to find Type 1 diabetes. But glad they have got you under control with insulin. Honestly I tried insulin and being scared of needles did not help. Some days I could manage it but mostly not. They ran the tests at the hospital but kept saying although I am not the normal for type 2 diabetes the tests were coming back as not type 1. I think they have just put me down to Type 2 now so I daren’t push for further tests.

 

[Leadinglights]

Wow that was a late diagnosis to find Type 1 diabetes. But glad they have got you under control with insulin. Honestly I tried insulin and being scared of needles did not help. Some days I could manage it but mostly not. They ran the tests at the hospital but kept saying although I am not the normal for type 2 diabetes the tests were coming back as not type 1. I think they have just put me down to Type 2 now so I daren’t push for further tests.

There seems to be a lot of diagnoses of Type 1 and age is no indicator, people in their 70 ies are finding they are type 1.
Have you thought of the shielded needles as you don't see the needle and that might make it easier for you to take the insulin which it looks as if you really need to manage your blood glucose levels.

 

[Courts]

There seems to be a lot of diagnoses of Type 1 and age is no indicator, people in their 70 ies are finding they are type 1.
Have you thought of the shielded needles as you don't see the needle and that might make it easier for you to take the insulin which it looks as if you really need to manage your blood glucose levels.

I honestly had no idea it could be found that late on.

And I wasn’t aware they did shielded needles. I asked my diabetes doctor for other ways to help and she just said to speak to my psychiatrist about my needle phobia to ‘get over it’. I would have definitely considered trying the shielded ones. I do need to manage my blood glucose levels and all these oral medications seem to be pointless. Baffles me how type 2 is often considered to be linked to being overweight yet the tablets they give cause weight gain.

 

[IrvineHimself]

That was super early to be awake!

I'm Asperger's and, because of the OCD, I usually have a long term study project on the go. I find I am at my most productive during the un-godly hours.

My progress will be slow I am sure though so hopefully doesn’t bore you I found out today I have been taking the wrong dose of yaltformin which is always great. Was supposed to be on two twice a day not just two once

That's okay, a frequent saying around here is that: Diabetes is a marathon, not a sprint. So just take your time and go at your own pace. Also, I am glad to hear you are getting your medication sorted out. From what I am reading on these boards, getting the medication that is correct for you can often be a bit of a problem.

I would keep at them about the shielded needles that @Leadinglights mentioned. I get the impression that your diabetes is not only of unusual pathology, but not responding to the treatments you have been prescribed. So being able to inject insulin could make a big difference.

I do need to manage my blood glucose levels

Have you been prescribed a blood glucose meter? If not, and you are struggling to manage your BG levels, you should definitely consider getting one. Around here, they are widely recommended.

I had a long discussion with my Doctor about them when she suggested I try a Sulfonylurea instead of Empagliflozin, (I think it was Glimepiride?) I wasn't really that impressed with the idea of the Hypoglycemia associated with Sulfonylureas to begin with and didn't really feel the BG meter was for me either, so I politely declined the offer. But, others do swear by them.

The NICE guidelines for BG meters are a bit restrictive, but many people self-fund. If you do decide to self-fund, ask on these boards about which one to get. It's not just a question of the initial outlay, but also the recurring costs for the testing strips.

I will be on-line off and on throughout the day. As you noted, I do keep unusual hours, so I may not reply immediately But that doesn't mean I am not here for you.
Irvine

 

[everydayupsanddowns]

Welcome to the forum @Courts

Sorry to hear about the uncertainty over your diabetes type, and the ineffectiveness of the meds you have been prescribed.

I really hope you can give insulin another go - and that the shielded needles work out for you. Has your consultant offered any explanation as to why the range of oral meds you have been taking are having so little effect? Were you given the results of the specific tests that were taken to determine your type, and how your results compared to the reference range?

Sometimes diabetes classification can be a tricky business and only really become clear after a while. We have members here like @Pattidevans who was diagnosed later in life as T2, and who had to jump through multiple hoops to get correctly classified years later!

 

[PattiEvans]

Sometimes diabetes classification can be a tricky business and only really become clear after a while. We have members here like @Pattidevans who was diagnosed later in life as T2, and who had to jump through multiple hoops to get correctly classified years later!

That's true @everydayupsanddowns but @Courts has said in a previous post that she has had the GAD and C-Peptide and the results revealed that she is T2.

I am totally baffled by the amount of meds @Courts is taking and them not being effective. I'm wondering what an average day's diet is like?

 

[Elenka_HM]

Hello and welcome to the forum @Courts !
I am your same age and was diagnosed as type 1 a few months ago. It was a shock and some days are harder than others, I'm starting talking therapy to help with some of the feelings it brought/intensified. But I already feel much better and the forum certainly helped me a lot. People are really supportive and I haven't encountered any of the "trolls" that you can unfortunately get in many online spaces.

Regarding needles, I understand your fears. I used to hate the thought or sight of them and didn't enjoy all the images of the vaccination campaign 🙄 I am slowly getting used to the injections. Sure, I had the motivation of, well...not really having a choice. But if you are offered insulin, I suggest you give it another chance. If you are effectively type 2, it can be a temporary measure to bring your levels down. I personally felt much better once I started my treatment and got my BG in a better range. They mentioned shielded needles, I've also seen some little gadgets to hide the needle, may be worth a try if they offer you the insulin.

I hope you find some help and relief around here, as others said, feel free to rant whenever you need to. We all do it sometimes! 🙂

Edit to add: my private messages are open if you want to chat.

 

[everydayupsanddowns]

I am totally baffled by the amount of meds @Courts is taking and them not being effective.

Yes it is unusual isn’t it - hence my pondering about the actual results and references... and whether that might shed any light on what’s going on.

 

[IrvineHimself]

Although c-peptide and glutamate decarboxylase test's are considered a gold standard, I've read in a few places that many things can affect the result. So, on there own, they are not always a guaranteed indicator as to the type pf diabetes.

This is from US NCBI library:

What are the Potential Problems with C-Peptide Measurement?​

The majority of c-peptide is metabolized by the kidneys with 5–10% then excreted unchanged in the urine [1, 5]. This can make c-peptide measurement in individuals with chronic kidney disease inaccurate.
Modern ultrasensitive c-peptide assays are able to detect c-peptide values as low as 0.0015–0.0025 nmol/l [6]. It is also important to be aware that cross-reactivity with proinsulin must be less than 10%, which is generally the case for modern assays [7]. The presence of large numbers of anti-insulin antibodies that bind both proinsulin and c-peptide can give a falsely high c-peptide reading. When considering c-peptide estimation it is important to be aware of which assay your local laboratory uses and in particular which method of collection they routinely process.
It should be noted that c-peptide will be expressed in nanomoles per liter in this article, as opposed to picomoles per milliliter, picomoles per liter, or nanograms per milliliter, which are often quoted in the literature (1 nmol/l = 1 pmol/ml = 1000 pmol/l = 3 ng/ml).

Note: I am only beginning to learn about this so it is quite possible I have completely misinterpreted what I am reading. If so, I appologise in advance for butting in when I should have kept quiet.

 

[EmmaL76]

@IrvineHimself is that saying that if you had say antigad 65 that it may falsely raise c peptide ? I’m am gad positive but normal (not raised ) c peptide, so curious. @Courts i hope your doing ok and managed to connect with people in a similar situation, us oldies can always provide support too though lol xx

 

[IrvineHimself]

@IrvineHimself is that saying that if you had say antigad 65 that it may falsely raise c peptide ? I’m am gad positive but normal (not raised ) c peptide, so curious

As I pointed out, this is a new subject to me. So, it is entirely possible that I am misinterpreting what I am reading. The reason I quoted that particular article was because it is the most reputable source I could find.