Newly diagnosed and slightly disappointed

[DianneGibb98]

Hi all, sorry this is a long post, and as the title says, I'm a 52 year old newly diagnosed diabetic and now after seeing the consultant at the local hospital im slightly disappointed with how it went.
I was first diagnosed as probably Type 2 in April, with HBA1c of 109 (12.1%) and blood sugars of 21 but no ketones. For some and in my opinion a good reason they did an Anti GAD blood test which surprisingly came back positive at 2000, and a c peptide. Both confirmed Type 1.
So my nurse referred me to the Diabetic consultant in the main hospital, and while waiting I was put on Metformin because I had managed to get in the 4 weeks waiting for my gad results I had got my hba1c down to 78. So they didn't think I sulin was needed?? I managed in the 8 weeks of waiting for the consultant to lose 1.5 stone in weight but only by cutting carbs out completely really (haven't seen a dietitian yet (just now been referred!) any time I eat any carbs my sugars go up massively, I have a finger monitor. I have managed to get my sugars down to 7 to 9 daily although my early morning fasting number is consistently at 8.8mmol for the past two weeks.
So when I saw my consultant last Thursday, she was happy with how things were? She gave me a ketone monitor and said if my bloods went to 14 to do a ketone test and get in contact with them. She thought it might be LADA but then also said I may just be type 2 and I quote "unlucky in having positive antigads and if we were to test everyone they would find people not diabetic with positive antigads" But then in the next breath said my pancreas may stop working and she couldn't say when but once that happens I would be put on insulin. So she said to carry on and she would see me again in 6 months....unless things changed? She gave me the number for my DSN and sent me away.
Sorry for the rant post but I kind of feel a bit pushed aside cause I've been doing ok...maybe cause I'm also hangry! Im barely eating normally which I understand I have to change from what I was doing but it really is a case of a sliver of carb and I'm at 15 mmol and over. So I have literally cut 99% which isn't sustainable really.
Thanks for reading! ❤️

 

[Lucyr]

Sounds like you’re making things harder than they need to be. Eat normally, see what your bgs do, and go back to start insulin if they’re high.

By eating 1% of what you used to, you’ve confused things by getting your a1c down in an unsustainable way. The a1c is supposed to tell them what happens on a sustainable treatment method which could be diet insulin etc. It’s not an exam that you stop eating 99% of what you were, get it down, then find you can’t continue at that level.

 

[DianneGibb98]

Thanks, that's what husband said, just go back to eating a normal albeit healthier as I admit it wasn't healthy before, diet. Even a spoon of brown rice would be nice!

 

[rebrascora]

Yes, unfortunately you are not doing yourself any favours by going low carb but then many nurses and consultants have no idea both of the power of low carb but also the willpower of some people to cut carbs to the bone to try to manage their diabetes.

Your experience very much ties in with mine in that I was able to bring my levels down into range by stripping carbs right back nearly to nothing apart from those from a few berries and leafy green veg and a bit of dairy and as you say it isn't sustainable for most people. However I was started on insulin 6 weeks after diagnosis because my HbA1c had increased slightly after 6 weeks instead of decreased even though my BG had come down.... probably because of the very sudden onset of mine. Thankfully my nurse and consultant were more switched on than yours seems to be and I was started on insulin there and then but didn't get Type 1 testing done for another 2 months, when GAD was found to be high and C-pep was borderline low which the consultant was happy to diagnose Type 1 from. I was encouraged to eat normally once I was started on insulin.... I had been keeping a food diary, so my DN at the GP surgery knew I had stripped my carbs right back..... but I had found that there had been so many other health benefits for me in going low carb that after a short period of wavering between normal and low carb about 70-90g a day, I stuck with the latter but continued to use my insulin and adjusted it for what I needed.

I think if your consultant is not really understanding your situation then you need to let things go badly wrong in order to get the treatment you need.... That said I would time it so that you are not potentially needing emergency A&E on a weekend and when your DSN may not be available.

 

[Wendal]

Morning and sorry for all of your disappointment and fully understand until you get a more complete diagnosis it is hard to move on.
Suggest you do as Lucy says and eat normally or the way you want to ear moving forward and measure your BG based on that diet.
What is clear is that if you are Type 1 which you strongly indicate then you will need insulin but it may be that your ultra low carb diet has “ masked” the need of your Beta cells to produce normal insulin levels hence your BG levels have been “ managed”.
BW for the future but if you have been confirmed as Type 1 I would push to be put on insulin ASAP.

 

[Ieva DUK]

Hi there, and thank you so much for sharing all of this - it’s definitely not a rant. You’re navigating a lot right now, and it makes complete sense that you’d be feeling a bit frustrated, confused, and even dismissed after your appointment. A new diagnosis at any age is a lot, but when it’s still unclear which type of diabetes you're dealing with, and you’re left to manage most of it on your own, it’s even more overwhelming.
Firstly, well done for everything you’ve done so far - you’ve clearly been really proactive in trying to manage your blood sugars, making lifestyle changes, and pushing for the right tests. That’s not a small thing, especially while trying to figure out what’s actually going on with your body.
It’s understandable that you’d feel a bit 'pushed aside' when the consultant seems to be giving mixed messages - saying you might be LADA (which could make sense with your GAD result), but then also possibly type 2 'with antibodies,' and then not offering much follow-up beyond 'call if things get worse.' That kind of ambiguity would make anyone feel uneasy, especially when your carb sensitivity is so stark.
And you're absolutely right - just as others have noted, cutting out nearly all carbs just to keep your numbers down isn't a long-term solution, and you shouldn’t be left to do that alone without support. Hopefully your dietitian appointment comes through soon, because it really could help to speak with someone about safe ways to reintroduce carbs and support your body nutritionally - especially if insulin may be on the horizon.
If it is LADA, it can be really tricky to manage in this in-between stage - not quite needing full insulin support yet, but also not responding to typical type 2 approaches. Keep listening to your body and don’t hesitate to reach out to your DSN if things shift - whether that’s higher fasting numbers, more carb sensitivity, or just uncertainty.
You're not alone in this, and you’ve every right to ask questions and advocate for more clarity around your care plan. Keep pushing when things don’t feel quite right - because it sounds like your instincts are spot on. Your chosen path needs to be something that's sustainable and doesn't feel like a 'punishment' - there's nothing worse than beginning to see food as a threat instead of something that nourishes you.
And if it helps to talk things out or just vent again, we’re here.

 

[DianneGibb98]

Oh my goodness everyone, Thank you. Your words have been so lovely and understanding. In the little time since posting I feel more "at home and comfortable" with my condition and so much happier in where i should be going to improve my quality of life as that's how it should be.
I do have to say my local hospital who took the antibody tests have been excellent but maybe because my parents both worked there as a paramedic and nurse!
Apart from my father who had diabetes due to having pancreatic cancer, we have no history of diabetes in the family. A lot of autoimmune issues in the family but not diabetes.

Thank you all again for your kindness

 

[rebrascora]

Oh and I should apologise for my lack of manners..... I should have started off my post with ....

Welcome to the forum but sorry you need to be here. Hope you find the goldmine of knowledge, support and practical experience here as massively helpful as I have since diagnosis 6.5 years ago.

This period of uncertainty is really frustrating and then once you start on insulin it will be a very steep learning curve but better to be starting it sooner than later, so don't be frightened of eating some carbs and letting your levels rise but keep a close eye on your BG and ketone levels and get help ideally before it becomes an emergency.

Let us know how you get on and don't be frightened to ask any questions you have, no matter how basic or obvious you think they might be. Most of us started this journey knowing nothing or even having misconceived ideas, so it really helps to be able to come here and ask whatever comes to mind or you are not sure about.

 

[Lucyr]

Thanks, that's what husband said, just go back to eating a normal albeit healthier as I admit it wasn't healthy before, diet. Even a spoon of brown rice would be nice!

You said you have a DSN number? Try a couple days of normal eating and give them a call to show the bgs and have a follow up discussion about the plan

 

[DaveB]

Hi. You need to ask for a C-Peptide test or have one done privately. It's that that will define any need for insulin and not antibody tests

 

[Inka]

So my nurse referred me to the Diabetic consultant in the main hospital, and while waiting I was put on Metformin because I had managed to get in the 4 weeks waiting for my gad results I had got my hba1c down to 78. So they didn't think I sulin was needed?? I managed in the 8 weeks of waiting for the consultant to lose 1.5 stone in weight but only by cutting carbs out completely really (haven't seen a dietitian yet (just now been referred!) any time I eat any carbs my sugars go up massively….Im barely eating normally which I understand I have to change from what I was doing but it really is a case of a sliver of carb and I'm at 15 mmol and over. So I have literally cut 99% which isn't sustainable really.

No, that doesn’t sound sustainable at all @DianneGibb98 ! You poor thing! No wonder you’re hangry! It sounds like you’ve made a common error that people with late-onset Type 1 do - drastically changing your diet, which gives a false sense of improvement to the medics. All it does is prolong the agony, basically. If you can’t eat a sliver of carbs without your blood sugar shooting high, then it sounds like you need insulin. Just eat a normal diet, test lots - and then phone your team with the results.

 

[DianneGibb98]

Hi. You need to ask for a C-Peptide test or have one done privately. It's that that will define any need for insulin and not antibody tests

Hi Dave, thanks, my local hospital did do a c peptide test which came back low.

 

[SWAN2019]

Hi Dave, thanks, my local hospital did do a c peptide test which came back low.

What was the figure if you say it was low? I had one done by the hospital, not sure on which set of bloods they took but no one checked what I had eaten before. As I also cannot eat gluten, choices in A&E or anywhere in the hospital restaurants/cafe's were pretty limited for someone just diagnosed as diabetic so mine could actually not have been a very accurate result.

 

[Leadinglights]

What was the figure if you say it was low? I had one done by the hospital, not sure on which set of bloods they took but no one checked what I had eaten before. As I also cannot eat gluten, choices in A&E or anywhere in the hospital restaurants/cafe's were pretty limited for someone just diagnosed as diabetic so mine could actually not have been a very accurate result.

I think there are different ranges depending on whether the test is done 'stimulated' i.e. eating carbs or 'non stimulated' i.e. fasting. People would normally be told what to do before the test.

 

[SWAN2019]

Hi all, sorry this is a long post, and as the title says, I'm a 52 year old newly diagnosed diabetic and now after seeing the consultant at the local hospital im slightly disappointed with how it went.
I was first diagnosed as probably Type 2 in April, with HBA1c of 109 (12.1%) and blood sugars of 21 but no ketones. For some and in my opinion a good reason they did an Anti GAD blood test which surprisingly came back positive at 2000, and a c peptide. Both confirmed Type 1.
So my nurse referred me to the Diabetic consultant in the main hospital, and while waiting I was put on Metformin because I had managed to get in the 4 weeks waiting for my gad results I had got my hba1c down to 78. So they didn't think I sulin was needed?? I managed in the 8 weeks of waiting for the consultant to lose 1.5 stone in weight but only by cutting carbs out completely really (haven't seen a dietitian yet (just now been referred!) any time I eat any carbs my sugars go up massively, I have a finger monitor. I have managed to get my sugars down to 7 to 9 daily although my early morning fasting number is consistently at 8.8mmol for the past two weeks.
So when I saw my consultant last Thursday, she was happy with how things were? She gave me a ketone monitor and said if my bloods went to 14 to do a ketone test and get in contact with them. She thought it might be LADA but then also said I may just be type 2 and I quote "unlucky in having positive antigads and if we were to test everyone they would find people not diabetic with positive antigads" But then in the next breath said my pancreas may stop working and she couldn't say when but once that happens I would be put on insulin. So she said to carry on and she would see me again in 6 months....unless things changed? She gave me the number for my DSN and sent me away.
Sorry for the rant post but I kind of feel a bit pushed aside cause I've been doing ok...maybe cause I'm also hangry! Im barely eating normally which I understand I have to change from what I was doing but it really is a case of a sliver of carb and I'm at 15 mmol and over. So I have literally cut 99% which isn't sustainable really.
Thanks for reading! ❤️

Your experience seems very similar to my diagnosis just before I was 53 on 3rd November 2023. My fasting blood sugar was 14 when I went to A&E, the night before after my meal it was 30. My symptoms had come on fairly quickly and I had already lost quite a few kg in just a few weeks before diagnosis. I was put on Metformin and also given Gliclazide for a couple weeks. That only got taken for a week as I had a really bad hypo an hour before I was due my first DN appointment so she took me straight off that.

Although I didn't have huge amounts of sugary foods or drink that was all cut out straight away. With not a lot of support on diet from my DN, just giving me the Freshwell App, I too cut carbs down very low, which as you say is not sustainable long term without making you feel very miserable, and the weight started to fall off even more, but far too quickly that I was starting to look anorexic. I also found I was waking in the night feeling sick and hungry. Mentioned this to the DN who said she didn't think it was anything to do with the diabetes. Eventually I paid for a Libre 2 so I could see what was going on in the night and it was that my sugar levels were going too low, even though I was now only on Metformin by then. I also discovered with this which carbs rose my sugar levels, porridge is a big no no as is a gluten free version of Weetabix. The nutty/protein bars which my DN told me not to eat had very little impact on my blood glucose levels so I added them back into my diet. It has certainly thrown up some interesting data to help manage my diet and make it a bit more interesting, although it can still be a struggle.

I had my first annual review on the 6th February 2024. Was told that they couldn't do the HbA1c as it wasn't 3 months since I had my last one! They were insisting that my blood tests were done on the the 8th November and at the surgery and would believe me that they were done at the hospital on the 3rd November. If my appointment had been 2 days later they would have done them! Said they would not be done at the next annual review, which would have been 15 months without a test since diagnosis. After a doctors appointment I managed to get them done in the April and my level had dropped to 37. Like someone has said on this thread, by cutting carbs too low we probably aren't really giving the best picture of how well the medication is working for us.

At long last I have managed to get referred for a group diabetes education course so hopefully can get some of my questions answered.

 

[SWAN2019]

I think there are different ranges depending on whether the test is done 'stimulated' i.e. eating carbs or 'non stimulated' i.e. fasting. People would normally be told what to do before the test.

Mine was done in A&E when I took myself there when I found out just how high my blood glucose was. I didn't even know it was being done and no one asked what I had eaten to know how to interpret if there are different ranges. Looking it up there are different levles. If you take into account I ate then my levels were low for a non fasting test but no one took that into consideration

 

[Lucyr]

Mine was done in A&E when I took myself there when I found out just how high my blood glucose was. I didn't even know it was being done and no one asked what I had eaten to know how to interpret if there are different ranges. Looking it up there are different levles. If you take into account I ate then my levels were low for a non fasting test but no one took that into consideration

They don’t have to ask what you ate when they can just look at your blood sugars. If your blood sugar was high at the time then it was stimulated. If bg was normal then non stimulated.

 

[DianneGibb98]

What was the figure if you say it was low? I had one done by the hospital, not sure on which set of bloods they took but no one checked what I had eaten before. As I also cannot eat gluten, choices in A&E or anywhere in the hospital restaurants/cafe's were pretty limited for someone just diagnosed as diabetic so mine could actually not have been a very accurate result.

Sorry I have just got to responding now!
You know the nurse at the hospital who took the test didn't actually say the number but just said they were low so confirmed T1D and was referring me to a consultant. It wasn't a fasting test though, although I hadn't eaten since 7am and my appointment was at 1pm, (I was at work in surgery all morning) I suppose it could have been classed as fasting?

 

[everydayupsanddowns]

How are you doing with your menu now @DianneGibb98 ?

Are you eating a more flexible and sustainable diet now? Have you restarted insulin?

 

[DianneGibb98]

I'm not hangry anymore! But unfortunately the weight has decided to plateau as I have started eating more carbs but being very good with portion size etc, sugars are rising and I did have a 14 mmol and ketone of 1.0 last week but that lasted just a couple of hours and I was back to 0.6 ketone and 9 mmol sugars. I am walking more too.
I've never been on insulin, I have been told to wait till my sugars are at a constant over 10-11 mmol for a few days then contact them again and they will decide what I will need to be on.
I have a diatetic appointment at the end of this month which will help.
It would be so much easier if I was a straight type 1 and not a LADA 1.5!!