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Advice welcome.

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Llx3

New Member
Hi,
I just wanted some advice from others...
I was diagnosed with young onset type 2 diabetes at the age of 17-18.
It runs in my family, so I was always trying to avoid it.
For a good couple of years, I wasn't on any medication for it or being seen my any specialist for it. Years later at around 24, I finally insisted on being referred and I was due to my levels still not being controlled without medication. I'm still being seen at the same hospital now, however during the time my Hb levels have gone from good to bad to better and now I'm not sure. I don't seem to tolerate a lot of the tablets and as of now I'm trying to tolerate sitagliptin. If I don't I've been told that insulin would be my other option, which I'm not keen on. The last time I was seen at the hospital was in December and all my appointment keep being changed to telephone appointments due to covid. When I spoke to my Dr last he was suppose to book me in for April to be seen in person and Im suppose to have a blood test, however my appointment letter came and my appointment is in June and its a telephone. I haven't had the best of service from my doctor and its becoming an issue but I feel guilty for complaining with everything going on. I just feel like it's been a let down and unless I push I don't get much care. I keep getting told I'm young and everything and I feel like the stigma towards type 2 diabetes is still so strong. I just feel like if I was a lot more healthy and skinny this wouldn't be a issue and I'd be taken more seriously.
Sorry for going on, just wanted some advice on what I can do.
 
Welcome @Llx3 🙂 What was your most recent HbA1C? You say diabetes runs in your family - has MODY (genetic diabetes) been ruled out?
 
Inka said:
Welcome @Llx3 🙂 What was your most recent HbA1C? You say diabetes runs in your family - has MODY (genetic diabetes) been ruled out?
Click to expand...
Hi,
It was 64 this was last year October.
I honestly couldn't tell you. This is the first time I've heard of MODY.
 
Llx3 said:
Hi,
It was 64 this was last year October.
I honestly couldn't tell you. This is the first time I've heard of MODY.
Click to expand...

Here is some info about MODY:

https://www.diabetes.org.uk/diabetes-the-basics/other-types-of-diabetes/mody

It’s one of the rarer types of diabetes but it does run in families because it’s linked to genes. As you say, 17/18 is young to be diagnosed with Type 2.

I’m Type 1 but hopefully some Type 2s will be along later or over the next few days to comment. What I can comment on though is insulin. If that’s what looks like it will work for you, don’t be scared of it. It’s actually a great tool that can help control blood sugar. You didn’t mention what you eat or whether you’re trying to lose weight, but insulin would give you more flexibility in what you ate.
 
Inka said:
Here is some info about MODY:

https://www.diabetes.org.uk/diabetes-the-basics/other-types-of-diabetes/mody

It’s one of the rarer types of diabetes but it does run in families because it’s linked to genes. As you say, 17/18 is young to be diagnosed with Type 2.

I’m Type 1 but hopefully some Type 2s will be along later or over the next few days to comment. What I can comment on though is insulin. If that’s what looks like it will work for you, don’t be scared of it. It’s actually a great tool that can help control blood sugar. You didn’t mention what you eat or whether you’re trying to lose weight, but insulin would give you more flexibility in what you ate.
Click to expand...
Thank you for the information.
It's scary because I have such a hard time with tablets that I can't imagine what insulin would be like.
To be honest my diet is honestly poor. I don't eat much at all but surprisingly it doesn't show.
I've been trying to loose weight for a long time but it's been a struggle and it's caused other issues as well.
 
Hi Llx3, welcome to the forum.

It's tricky getting seen at the moment as we all know so I wouldn't take the current rearrangements personally. Is there something in particular that you wanted from a face to face appointment?

Aside from doing your bloods, it's perfectly possible to manage things remotely for the time being. It might be worth writing down your concerns around managing your diabetes and bringing up with them the next time you have your appointment.

Most doctors are still issuing blood tests at dedicated centers so hopefully they can arrange that for you so you have a better picture of what's going on.

It sounds frustrating to be intolerant of the medication they've given. Sitagliptin is known to have side effects so I hope things settle down for you soon.

Have you been able to make lifestyle/dietary changes? Just wondering if you had been given advice on testing your blood glucose levels daily and what's best to eat as this can have a huge impact on managing things and feeling a bit more in control.
 
Cherrelle DUK said:
Hi Llx3, welcome to the forum.

It's tricky getting seen at the moment as we all know so I wouldn't take the current rearrangements personally. Is there something in particular that you wanted from a face to face appointment?

Aside from doing your bloods, it's perfectly possible to manage things remotely for the time being. It might be worth writing down your concerns around managing your diabetes and bringing up with them the next time you have your appointment.

Most doctors are still issuing blood tests at dedicated centers so hopefully they can arrange that for you so you have a better picture of what's going on.

It sounds frustrating to be intolerant of the medication they've given. Sitagliptin is known to have side effects so I hope things settle down for you soon.

Have you been able to make lifestyle/dietary changes? Just wondering if you had been given advice on testing your blood glucose levels daily and what's best to eat as this can have a huge impact on managing things and feeling a bit more in control.
Click to expand...
Hi,
I have to have a blood test done a week before my appointment but that was suppose to be in April, now its been changed to June.
It's hard expressing your concerns over the phone, especially when theirs so many.
Thank you, I hope they do too.

It's very weird, I've been told before that I should be checking my blood glucose levels and I would usually be asked for a record, when speaking to the nurse or if I'm having issues.
However my Dr has told me not to be checking them at all. Which is annoying because how would I know whats going on.
I still do if I feel funny but still.
 
@Llx3 I’d check your blood sugar. Knowledge is power. Diabetes is something that we ourselves have to take control of, and become our own experts.
 
I do wish that GPs would be more honest when telling people not to test. It's about the cost of the test strips and nothing else. Apparently, there is some research which states that some people become anxious if their tests are bad, but I have a feeling that this was just some BS research with little standing in reality. It most certainly was not true for me and a lot of people on this forum!

Having said that, whilst testing is important to help control diabetes, it is also crucial to understand how best to use it. Don't just test and not follow up with diet/exercise changes when the testing indicates that is what is needed. Mind you, I also understand that making fundamental changes to what one eats and exercising regularly is something which is not that easy. I managed to make the changes once ten years ago but then slid back somewhat so that I'm having to repeat the process again. I think I'm quite lucky though because I do seem to be able to shift the weight when I really put some effort in (I think that I have a good set of mitochondria .... well that's my theory!).

Sorry that you're having such a rough time communicating with your surgery. Keep at it though. Don't think for one second that it is something wrong with you! You have every right to keep pressing them if things aren't improving for you.
 
@Andy HB I completely agree about the usefulness of testing and the probable issue of cost, but I do think ‘anxiety’ is an issue too. You can see it here sometimes. It’s easy for people to get fixated on something or worry about figures that don’t need to be worried about.
 
Inka said:
@Andy HB I completely agree about the usefulness of testing and the probable issue of cost, but I do think ‘anxiety’ is an issue too. You can see it here sometimes. It’s easy for people to get fixated on something or worry about figures that don’t need to be worried about.
Click to expand...
I accept that anxiety can become an issue for for some. Especially if they are not educated properly on how to test and what to do if the results are not good. I am, perhaps, a little blinkered on this aspect because I have been lucky enough to see improvements pretty quickly when I put my mind to it. I realise that this isn't necessarily the case for everyone.

I was also given very good advice by the DSN when initially diagnosed along with a blood glucose monitor. That was key in getting me sorted out and I am keen that everyone should have that opportunity and support as well. 🙂
 
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