Typing and "testing"

[Kerri5981]

Below is the original post I put up.
All I wanted to know was how did other people succeed in getting their type confirmed?
I'm sorry if I didn't use "Twitter" rules but sometimes things need explaining a little bit- I didn't realise that my whole life story was a requirement of asking a question.
This is making me remember why I stopped using this site unfortunately




I am now approaching my 3rd anniversary and am still struggling; with my health practitioners and my type and just coping in general.
I am still not allowed to have my Type confirmed via the NHS as "it's too expensive" which costs £36 (or so I have been told) even after offering to pay for it.
I am only able to find one private clinic anywhere remotely near me (still 2.5 hrs drive each way!) and it is going to cost me £205 approx.
On this point, I would like to know how did other people find out their Type when diagnosed?
And how do you maintain regular treatment arrangements with their specialists?
I have actually gained weight since my diagnosis as well and despite reducing my carbs I cannot shift a single pound
My depression is not helped by any of the above and it's causing other health issues to appear, i.e. blood pressure and liver disease, as well as absolutely no sex drive.
I have nobody in my family to turn to and there is no support in the area I live in, it feels like as long as we don't bother the doc's they don't bother with us.

 

[HSSS]

@Kerri5981

Could you clarify your diagnosis please. Your avatar states you are an HCP yet you talk about your diabetes. Which type? What treatment. This information is necessary to get any valid responses to your circumstances. Perhaps update your profile to save the confusion repeating (via a browser it doesn’t work in the app).

Also do you test yourself? If so what sort of numbers do you get? What sort of diet do you eat?

 

[JoKalsbeek]

Hey Kerri,

Type 2 here. Hope you don't mind if I ask a few questions? You're coming up on your 3rd anniversary, so I'd like to know what your treatment's been so far. Are you on medication, and if so, which, and are you on insulin? Do you test regularly (Before a meal and 2 hours after first bite), and what numbers do you see then? What's your latest HbA1c?And what do your usual meals look like in a day? You said you cut back on carbs, but I'd like to know exactly how far you cut back, and if there's any tweaking to be done.

I know some people have to wait a long time for say, a LADA diagnosis for instance, but if it was T1 I think you probably would've known by now, as I do believe any honeymoon period'd be over. (@helensaramay , am I right or am I waaaay off here?). And to answer your question, my type was assumed to be T2, then I responded badly to the metformin and due to that, plus my age, they thought maybe I was a T1 or 1.5, so that's when testing was done (C-peptide and GAD), which confirmed T2. If the metformin debacle hadn't happened, I never would've been tested, it'd just have been an educated guess based on my being overweight and my gran having had T2. I saw a specialist a few times but she referred me back to my GP, which I was happy about because we get along really well. (I should be seeing the diabetes nurse, but I have anxiety issues with people, and my doc suggested that I could just stick with her instead, which more than worked for me.) So I just make an appointment when I feel like I should, and that can be 3 months or 6 months, or, well, once a year even, as my numbers are pretty good, but I prefer to check stuff more often because of co-morbidities. So I make the appointments myself. I have to drop by the surgery every 10 weeks anyway for a shot, so that's also when I pop up to the desk and ask the assistant for the tests to go with the diabetic review. (I don't know whether that'd work in the UK though, I'm in the Netherlands).

Most of us never had a C-peptide and GAD test done because of cost-cutting, but if there's any clear indication, like not being able to get your numbers down no matter what you do, you should be able to request them. But anyway, if you can answer the questions, that'd be fab, and we can go from there. There's a load of people here who are really good at interpreting stuff, so that'd be a great start.

By the way, your avatar is a bit confusing, as it says (I think) that you're a healthcare professional, rather than a type unknown. might want to change that.

Hang in there!
Jo

 

[Juicyj]

Hi @Kerri5981 I agree with @HSSS Your profile status is set up as a Health Care Practitioner which is misleading, can you please change your setting and advise what your current management looks like and if you're taking insulin or medication ?

 

[Deleted Account]

Thanks for the tag @JoKalsbeek
Like you, I was not tested for type of diabetes. It may seem very ad hoc but it was (correctly) decided I was type 1 because my symptoms came on quickly and I was told I was "too thin to be type 2" .

As for honeymoon period, I don't want to derail this thread talking about honeymoon in detail so I will try to keep it short.
As an autoimmune disease, type 1 is caused by the body deciding the insulin producing cells are bad and kills them off over time.
The honeymoon period is the time when a person with type 1 still has some of these cells and is still producing some insulin.
The length of this period varies per person. Typically, children diagnosed with type 1 will loses these cells quickly whereas an adult will take longer ... which is one of the reasons adults are sometime misdiagnosed with type 2.
For example, I needed to inject insulin from the first day of my diagnosis but my dose gradually rose over about 5 years as more and more of the insulin producing cells were killed off. So, some say my honeymoon period lasted 5 years.
However, if I had not been injecting insulin from the first year, I would not be around for the end of the honeymoon period.

I think it would be unusual for someone to have type 1 diabetes but not needing to inject any insulin for 3 years.
There are some very rare cases when this has happened but ... it is very rare.

(Sorry, a short explanation was a bit longer than I intended.)

 

[Kerri5981]

@Kerri5981

Could you clarify your diagnosis please. Your avatar states you are an HCP yet you talk about your diabetes. Which type? What treatment. This information is necessary to get any valid responses to your circumstances. Perhaps update your profile to save the confusion repeating (via a browser it doesn’t work in the app).

Also do you test yourself? If so what sort of numbers do you get? What sort of diet do you eat?

Officially I am diabetic but have no Type. That is one of my biggest bug bears! My avatar was made back in the first few days of diagnosis and have no idea what any of it means!

I was pretty clear what my issue is-

1. I am nearly 3 years in after diagnosis
2. I started on Humulin-3 and Metformin the day after diagnosis
3. I changed to Levemir(long-lasting) and Novorapid about six months later
4. My doses have gradually increased over the first two years
5. I still can't get a Type test
6. I can't get regular health care
7. I am now developing extra health issues related to my diabetes
8. I am trying to reduce my carbs as it makes for better sugar control
9. I have no physical or medical or emotional support

Does this help?

 

[Kerri5981]

Hey Kerri,

Type 2 here. Hope you don't mind if I ask a few questions? You're coming up on your 3rd anniversary, so I'd like to know what your treatment's been so far. Are you on medication, and if so, which, and are you on insulin? Do you test regularly (Before a meal and 2 hours after first bite), and what numbers do you see then? What's your latest HbA1c?And what do your usual meals look like in a day? You said you cut back on carbs, but I'd like to know exactly how far you cut back, and if there's any tweaking to be done.

I know some people have to wait a long time for say, a LADA diagnosis for instance, but if it was T1 I think you probably would've known by now, as I do believe any honeymoon period'd be over. (@helensaramay , am I right or am I waaaay off here?). And to answer your question, my type was assumed to be T2, then I responded badly to the metformin and due to that, plus my age, they thought maybe I was a T1 or 1.5, so that's when testing was done (C-peptide and GAD), which confirmed T2. If the metformin debacle hadn't happened, I never would've been tested, it'd just have been an educated guess based on my being overweight and my gran having had T2. I saw a specialist a few times but she referred me back to my GP, which I was happy about because we get along really well. (I should be seeing the diabetes nurse, but I have anxiety issues with people, and my doc suggested that I could just stick with her instead, which more than worked for me.) So I just make an appointment when I feel like I should, and that can be 3 months or 6 months, or, well, once a year even, as my numbers are pretty good, but I prefer to check stuff more often because of co-morbidities. So I make the appointments myself. I have to drop by the surgery every 10 weeks anyway for a shot, so that's also when I pop up to the desk and ask the assistant for the tests to go with the diabetic review. (I don't know whether that'd work in the UK though, I'm in the Netherlands).

Most of us never had a C-peptide and GAD test done because of cost-cutting, but if there's any clear indication, like not being able to get your numbers down no matter what you do, you should be able to request them. But anyway, if you can answer the questions, that'd be fab, and we can go from there. There's a load of people here who are really good at interpreting stuff, so that'd be a great start.

By the way, your avatar is a bit confusing, as it says (I think) that you're a healthcare professional, rather than a type unknown. might want to change that.

Hang in there!
Jo

Firstly- what is a "honeymoon period"?
I am a fully insulin dependent using Novorapid and Levemir pens I keep fairly strict numbers but I do slip up sometimes.
I started on Humulin-3 with Metformin but had to stop the Metformin pretty quickly because of stomach issues and me and my nurse talked with a doctor who agreed to change me over to the new method as I was regularly getting hypo's and hyper's.
I think my numbers are just below 70 they started at 150+ when I was diagnosed.
I don't get told my test results for some reason and my appointments are a nightmare to get and keep regular.
I used to be religious at testing but my depression affects a lot of things and giving a sh*t is high on that list, unfortunately.
I test enough to know that while I avoid enough white carbs I am pretty controlled but the eventual hyper/hypo is going to happen because of my relationship with food( I have a history of eating disorders).
The UK has some very strict rules unfortunately.
Thanks for the tip on my avatar- I had no idea what anything meant as it was in my first week of diagnosis and no one told me how to set it up!!

 

[Kerri5981]

Hi @Kerri5981 I agree with @HSSS Your profile status is set up as a Health Care Practitioner which is misleading, can you please change your setting and advise what your current management looks like and if you're taking insulin or medication ?

Well maybe you could help me find out what my type was instead of just being rude

 

[Kerri5981]

Thanks for the tag @JoKalsbeek
Like you, I was not tested for type of diabetes. It may seem very ad hoc but it was (correctly) decided I was type 1 because my symptoms came on quickly and I was told I was "too thin to be type 2" .

As for honeymoon period, I don't want to derail this thread talking about honeymoon in detail so I will try to keep it short.
As an autoimmune disease, type 1 is caused by the body deciding the insulin producing cells are bad and kills them off over time.
The honeymoon period is the time when a person with type 1 still has some of these cells and is still producing some insulin.
The length of this period varies per person. Typically, children diagnosed with type 1 will loses these cells quickly whereas an adult will take longer ... which is one of the reasons adults are sometime misdiagnosed with type 2.
For example, I needed to inject insulin from the first day of my diagnosis but my dose gradually rose over about 5 years as more and more of the insulin producing cells were killed off. So, some say my honeymoon period lasted 5 years.
However, if I had not been injecting insulin from the first year, I would not be around for the end of the honeymoon period.

I think it would be unusual for someone to have type 1 diabetes but not needing to inject any insulin for 3 years.
There are some very rare cases when this has happened but ... it is very rare.

(Sorry, a short explanation was a bit longer than I intended.)

I have been on insulin since the day after I got diagnosed!
I have had to change the types of insulin a few months later and my Levemir (long-lasting) has gradually increased since using it over 2 years ago.

 

[Juicyj]

Well maybe you could help me find out what my type was instead of just being rude

Sorry if you think my response was rude, but it certainly wasn't meant that way, I am just trying to find out more from you and to advise that your current status will need updating unless you are of course a HCP.

As I can see you've now told us your on insulin, how are your blood glucose levels on a daily basis and how often are you checking ?

We can't diagnose you here, but we can help support you in finding out more information which can help with your depression and control.

 

[Kerri5981]

Sorry if you think my response was rude, but it certainly wasn't meant that way, I am just trying to find out more from you and to advise that your current status will need updating unless you are of course a HCP.

As I can see you've now told us your on insulin, how are your blood glucose levels on a daily basis and how often are you checking ?

We can't diagnose you here, but we can help support you in finding out more information which can help with your depression and control.

I don't want a diagnosis!
I want help in getting help!!!!!!!!!
It shouldn't make any difference what my numbers are to the basic question which was HOW DID OTHER PEOPLE GET THEIR TYPE AT DIAGNOSIS?????

 

[LooperCat]

I wasn’t tested for any type either - they just told me it was T1 as it came on so quickly (in my case following a bout of gastric flu) - I wasn’t in DKA or anything, just went to the doctor for a sick note and mentioned I’d been very thirsty so he did a urine dip test, declared it to be golden syrup and shipped me off to hospital where I was out on insulin. I was 23 and not especially thin.

 

[Kerri5981]

I wasn’t tested for any type either - they just told me it was T1 as it came on so quickly (in my case following a bout of gastric flu) - I wasn’t in DKA or anything, just went to the doctor for a sick note and mentioned I’d been very thirsty so he did a urine dip test, declared it to be golden syrup and shipped me off to hospital where I was out on insulin. I was 23 and not especially thin.

I had had some symptoms for about 3 years and didn't know that others actually WERE symptoms!
I was only diagnosed because a surgical nurse smelt "pear drops" just before walking me into the theatre!
At the time I had a BMI of 24 and was always ragingly thirsty with repetitive thrush and 44 years old.
Fingerprick test came up with 24, then 18 then 28 after I was told and so it all began........

 

[Juicyj]

I became very poorly after a week skiing, first day back went straight to the docs I was told to go straight to hospital, symptoms included weight loss, excessive thirst/peeing/dry hands, dry mouth, thrush, vision was poor, extremely tired and no energy. At the hospital I went straight onto insulin and was asked to stay but left within a couple of hours, was completely overwhelmed and had a young child to take care of.

 

[Kerri5981]

I became very poorly after a week skiing, first day back went straight to the docs I was told to go straight to hospital, symptoms included weight loss, excessive thirst/peeing/dry hands, dry mouth, thrush, vision was poor, extremely tired and no energy. At the hospital I went straight onto insulin and was asked to stay but left within a couple of hours, was completely overwhelmed and had a young child to take care of.

I had 3 kids at home and was waiting for spinal surgery that I should have had 2 years previously according to my surgeon!
The next day was spent waiting all day at the hospital for the diabetic team to confirm and show me how to test/inject.

 

[Rachox]

Hi @Kerri5981 , sounds like you have had a particularly frustrating few years and we are sorry we can’t help you pin down what type of diabetes you have. Can I suggest that you follow a complaints procedure with the NHS, as you seem unhappy with the care you are getting from your healthcare team. Here’s a link with info. about how to go about it:
https://www.nhs.uk/using-the-nhs/about-the-nhs/how-to-complain-to-the-nhs/

 

[Kerri5981]

Hi @Kerri5981 , sounds like you have had a particularly frustrating few years and we are sorry we can’t help you pin down what type of diabetes you have. Can I suggest that you follow a complaints procedure with the NHS, as you seem unhappy with the care you are getting from your healthcare team. Here’s a link with info. about how to go about it:
https://www.nhs.uk/using-the-nhs/about-the-nhs/how-to-complain-to-the-nhs/

thank you

 

[Antje77]

On this point, I would like to know how did other people find out their Type when diagnosed?

I'm not completely sure as to what type I am. I've had some testing (C-pept. and anti-GAD) and they were inconclusive. My internist and I chose to not do further testing and go with the assumption I'm T1. Before I had those tests, I had been treated like a T1 for almost 2 years, just like you, so nothing really changed.

And how do you maintain regular treatment arrangements with their specialists?

I see both my internist and my DN once a year, as I requested.

I have actually gained weight since my diagnosis as well and despite reducing my carbs I cannot shift a single pound

Losing weight on insulin apparently is very hard. I eat a lot less than before, and healthier choices too, but have gained a couple of kilo's since starting insulin. Looks pretty stable now, and although not happy about my bmi of 36 or so, I prefer healthy blood sugars over healthy weight.

My doses have gradually increased over the first two years

Mine too.

struggling; with my health practitioners

Can you ask to be seen by an endo? I'm not sure what the problem with your HCP's is and why you can't see someone else.

Hope things'll get better for you in the near future!

 

[JoKalsbeek]

Firstly- what is a "honeymoon period"?
I am a fully insulin dependent using Novorapid and Levemir pens I keep fairly strict numbers but I do slip up sometimes.
I started on Humulin-3 with Metformin but had to stop the Metformin pretty quickly because of stomach issues and me and my nurse talked with a doctor who agreed to change me over to the new method as I was regularly getting hypo's and hyper's.
I think my numbers are just below 70 they started at 150+ when I was diagnosed.
I don't get told my test results for some reason and my appointments are a nightmare to get and keep regular.
I used to be religious at testing but my depression affects a lot of things and giving a sh*t is high on that list, unfortunately.
I test enough to know that while I avoid enough white carbs I am pretty controlled but the eventual hyper/hypo is going to happen because of my relationship with food( I have a history of eating disorders).
The UK has some very strict rules unfortunately.
Thanks for the tip on my avatar- I had no idea what anything meant as it was in my first week of diagnosis and no one told me how to set it up!!

Helen already explained the honeymoon period, and better than I possibly could, so I'll leave that at that. But from the sound of it you're being treated with insulin as if you are a T1. Far as I know that means you should have a diabetic team and regular tests and check ups. If you're not getting those, I do believe it is time to, as Rachox suggested, file a complaint, and get a second opinion elsewhere. While a T2 diagnosis gets a lot of stuff taken care of, the care for a confirmed T1 is of, in my opinion, more vital importance, because things can go awry very fast. And while for a T1 white and brown carbs matter (splitting doses for instance due to lower GI and such), for a T2 a carb is a carb, white or brown doesn't matter, they're "equally evil". Just thought I'd mention it.

 

[Daibell]

Hi. My GP guessed (wrongly) that I was T2. I've never had any NHS type tests as my later diabetes GP refused to accept I was late onset T1 and initially refused me insulin when it was obvious I needed it. I had my own GAD and c-peptide tests done privately. The GAD was negative but my c-peptide showed low'ish insulin. My stupid GP a year later said I needed to move over to insulin and was surprised when I readily accepted it! I've been going thru the honeymoon period now for 10 years but it's coming to an end as my insulin needs have stopped increasing. I'm still listed as T2 but getting good management by the surgery nurse and I can't face arguing with the stupid GP again. BTW I had a high white cell count and dull abdominal pain at diagnosis which faded so I'm guessing a virus as the T1 cause. Your surgery MUST offer you at least an annual diabetes review and MUST let you have at least your Medical Summary results. They can refuse you access to your full medical data if they think you can't cope with it. They MUST offer you at least basic online access. If the surgery doesn't do any of this then complain to the Practice Manager and then the local CCG.