Newbie!

[Ellen Palmer]

Hi, I was initially diagnosed early Sept as type 2, HbA1c 133 random bg22. I had weight loss, increased thirst and urination. DN tested my GAD antibodies as I was approaching 60 and slim, unfortunately, they came back high, positive for type 1. I am a slow burner, still on metformin and gliclazide with excellent numbers at the moment, with some hypos,lowest 3.1.
My HbA1c came down to 44 just before Xmas. I have the insulin waiting in the fridge for when numbers increase (very worried and scared over this). This had come as a real blow for my retirement and 60th birthday in November. We cancelled our cruise as nobody could tell me if I would have to start injecting while at sea. And it was all too new at that point for us to go and enjoy our holiday. However, I am slowly coming to terms with the "monkey" I now have on my back. Hoping to get a Libre2 shortly.

 

[Leadinglights]

Welcome to the forum
It is amazing that your HbA1C has come down so much in that short time given your Type 1 diagnosis and you are only taking oral medication and no insulin.
You should be entitled to a Libre so I hope you get that soon, in the meantime you could apply for the free trail form Abbott which would give you 2 weeks of having a sensor to try out, you would need a compatible phone.

 

[Ellen Palmer]

Thank you, I was surprised myself but very happy. I keep thinking it's all some huge mistake, as I had/was going through a lot of stress and bereavement at the time, but with a GAD of over 2000, it's not. I had a CT that was thankfully normal. I have also had coeliac disease for 20 years so what I eat is pretty regulated so I think it's a combo of the tablets and the gluten free diet. 🙂

 

[Inka]

Welcome @Ellen Palmer 🙂 As you might know, coeliac disease and Type 1 are connected as they’re both auto-immune disorders. Personally, I’d be wary of the Gliclazide as it can burn out your remaining beta cells faster. Insulin, however, can help preserve them for longer. Insulin is nothing to be scared of.

Sorry you had to cancel your cruise

 

[Ellen Palmer]

Hi, that's what I keep reading, but I saw the clinical lead in diabetes at the hospital, we asked specifically about being on these meds and he said it wouldn't do any harm. I also asked the DN again yesterday that I had heard they aren't good for type 1, and she said they wouldn't start insulin for me with the good blood sugars I've got at the moment as it would be too much. I could be slow burning for ages. All I can do is follow what the experts tell me.

 

[Inka]

It’s good you asked @Ellen Palmer It’s up to you what meds you take. Type 1 is a condition where we have to advocate for ourselves a lot and be politely pushy.

The internet is full of info about Gliclazide, including from the NHS. I’d do everything I could to preserve my remaining beta cells. Did you have a C Peptide test done?

 

[shiffcam13]

Hi @Ellen Palmer . Sorry to hear of your diagnosis. Your posts resonated as your diabetes journey seems so far to be quite similar to mine. Stress bereavement, similar symptoms, initial results, same age and high GAD. Similar initial meds.
Hoping to reassure you I just want to say when/if the time comes that you start using that insulin in your fridge, while it takes a bit to settle into, it’s nothing to be afraid of and you’ll soon get your head round it.
Hope you get your libre soon as the info generated really helps. There’s a bit to think about when travelling but that too is manageable.
Always loads of advice on here from people with much more knowledge than me. Wishing you well

 

[Ellen Palmer]

It’s good you asked @Ellen Palmer It’s up to you what meds you take. Type 1 is a condition where we have to advocate for ourselves a lot and be politely pushy.

The internet is full of info about Gliclazide, including from the NHS. I’d do everything I could to preserve my remaining beta cells. Did you have a C Peptide test done?

I asked the DN about c-peptide at my first appt, she said they might do that at a later date. As it might be revealed that I have a certain type as I progress, as they are discovering different types these days, not sure what she means as the consultant said it was type1. She also said it might have been triggered by covid as they are seeing more and more patients being diagnosed with type 1 after CoVid.

 

[Ellen Palmer]

Hi @Ellen Palmer . Sorry to hear of your diagnosis. Your posts resonated as your diabetes journey seems so far to be quite similar to mine. Stress bereavement, similar symptoms, initial results, same age and high GAD. Similar initial meds.
Hoping to reassure you I just want to say when/if the time comes that you start using that insulin in your fridge, while it takes a bit to settle into, it’s nothing to be afraid of and you’ll soon get your head round it.
Hope you get your libre soon as the info generated really helps. There’s a bit to think about when travelling but that too is manageable.
Always loads of advice on here from people with much more knowledge than me. Wishing you well

Hi @Ellen Palmer . Sorry to hear of your diagnosis. Your posts resonated as your diabetes journey seems so far to be quite similar to mine. Stress bereavement, similar symptoms, initial results, same age and high GAD. Similar initial meds.
Hoping to reassure you I just want to say when/if the time comes that you start using that insulin in your fridge, while it takes a bit to settle into, it’s nothing to be afraid of and you’ll soon get your head round it.
Hope you get your libre soon as the info generated really helps. There’s a bit to think about when travelling but that too is manageable.
Always loads of advice on here from people with much more knowledge than me. Wishing you well

Hi, that is so reassuring, thank you . I notice you are type 1.5 LADA. I asked the consultant if that was what I had and he said, that would be revealed(very mysterious ). I am glad I decided to join the forum for such helpful and reassuring comments as yours as I've not been great anxiety wise since this diagnosis.

 

[Inka]

A C Peptide test would be useful as it would show how much insulin you’re producing. There’s guidance about treatment related to C Peptide level, which you might be interested to look at, as it puts you in a ‘zone’ and gives a little information about that zone.

To my mind, if you need Gliclazide (ie you’re not making enough of your own insulin) then you need insulin (to replace your lost insulin). I hope that makes sense. In that case, insulin would be the better choice and might help your beta cells.

 

[everydayupsanddowns]

Welcome to the forum @Ellen Palmer

Glad you have found the shared experiences offered by forum members helpful and reassuring.

Gliclazide works by encouraging the beta cells to produce more insulin than they normally would. So in your case this seems to be making up for the beta cells that you have lost from the ongoing autoimmune attack (by pushing the remaining cells to work harder and make up the difference).

What insulin(s) have you been given? I’m not medically qualified, but I would imagine that if you weren’t taking the gliclazide you should be able to use small insulin doses (both background insulin and mealtime insulin) to cover that shortfall without asking your remaining beta cells to work ‘double shifts’. Particularly if you had half unit pens to help with smaller doses.

I have found over the years that some clinics can seem reluctant to change things which are currently working, while others seem to want to make changes for the sake of it. So I suppose it’s up to you as to whether you’d prefer to wait until you have lost more beta cells and the gliclazide is no longer able to make up the difference, or whether you’d prefer to move onto insulin sooner rather than later?

As @Inka says, sometimes we have to be quietly firm and persistent at clinic appointments.

 

[Inka]

And remember that you have insulin waiting in the fridge @Ellen Palmer ! Not that you should ever use it without medical input, but it does put you in a much stronger position during any discussions. If you stopped the Gliclazide and told them you no longer wished to take it and casually mentioned the insulin, I think they’d be very keen to help you explore insulin. With insulin, you could then broaden your diet too, including cakes without sweeteners!

 

[Ellen Palmer]

Hi Inka, at the moment I've only been diagnosed for four months. All I can do is take their advice and guidance. The DN is diligently ringing me every two weeks to monitor my blood sugars and as soon as they rise into double digits they will wean me off the glic and onto the basal insulin first and then the Fiasp bolus insulin. They are happy with my numbers mostly ranging between 4 and 8 during the day, with morning figures of low to middle 5s. I am only on the lowest dose of glic 40mg twice a day. If they decide to start upping that dose as my figures rise (though they had not suggested that), I will certainly question it. Thank you for your experience and advice.

 

[rebrascora]

@Ellen Palmer Have you changed your diet? I have a feeling i read somewhere else that you were very low carb..... apologies if I am wrong and it was someone else. This is not necessary if you are Type 1 or LADA and will likely confuse medical professionals as to your treatment because most HCPs have no idea of how powerful low carb can be and it can even sometimes cause them to question your Type 1 diagnosis,
Of course, if you are happy with eating low carb that is fine, but it is not necessary for Type 1 and can cause confusion with your treatment.

 

[Ellen Palmer]

Hi Barbara, no I haven't changed my diet at all as I am a coeliac, so first and foremost I adhere to that. However, I don't eat a lot (never over eat), I rarely eat out and don't have takeaways or buy ready made gluten free meals. Most of everything I eat is home made including baking. So it may be that what I eat doesn't amount to a lot of carbs, I am carb aware (as per the DN), but I don't do that deliberately it's just what I have done for the last 20 years since I found out I was a coeliac. I have always had a healthy diet and slim which is why after they diagnosed me as type 2 they then checked for type1. x

 

[rebrascora]

Apologies. I must have seen another newbie LADA/Type 1 member post something about eating low carb and got mixed up. It is a bit unusual for a Type 1 not to need insulin straight away although sometimes people start on it and then their remaining Beta cells have a bit of a revival and they can cut the doses right down or even cut them altogether for a few months before needing to increase them again. Diabetes is very individual in how we present and how we respond afterwards.
it is great that you have regular contact with your nurse and insulin in the fridge ready for when you need it

 

[Ellen Palmer]

Hi, they say I am a slow burner so my pancreas is still producing insulin and my blood sugars are in low figures. Today I started at 5.6 first thing, then before lunch 5.5 (I had a snack at 12.45), checked at 4pm it was 5.6 (so had a small home made mince pie with coffee,)checked again 6pm 7.7 I can also get some lows if I am late having meals (3.1 ). The nurse says at these levels insulin would likely take me too low, so it's watch and wait. I have seen others with LADA posting on LADA groups in the same situation as me, some who have been in limbo for a few years. Looking forward to getting my Libre2 on the 19th.
Best wishes x

 

[SB2015]

A belated welcome to the forum from another late starter (53 at diagnosis) with T1.

I am pleased that you are getting Libre as this will help to show you what is happening between your meals. I was very poorly at diagnosis and was put onto insulin straight away, albeit very small doses to start with. Things change over time.

You are at the start of this and will gradually work out what is best for you, and once on insulin can eat as few or as many carbs as you want to, once learning how to match your insulin to what you choose to eat.

Kkep the questions coming. There is a wealth of experience to tap into as you have already seen.

 

[Proud to be erratic]

I asked the DN about c-peptide at my first appt, she said they might do that at a later date. As it might be revealed that I have a certain type as I progress, as they are discovering different types these days, not sure what she means as the consultant said it was type1. She also said it might have been triggered by covid as they are seeing more and more patients being diagnosed with type 1 after CoVid.

Hello @Ellen Palmer,

In his book "Think Like a Pancreas" the author Gary Scheiner quite early on states that Diabetes is Confusing, Complicated and Contradictory. I think you are already getting a hint of that with mildly different comments from your Consultant and the DN! Incidentally we seem to hear quite often on this forum that Covid has triggered a recent above average number of T1 diagnoses.

A small aside I found "Think Like a Pancreas " informative and easy to read. The author is American but throughout the text he used both American and European units.

Hi, that is so reassuring, thank you . I notice you are type 1.5 LADA. I asked the consultant if that was what I had and he said, that would be revealed(very mysterious ).

And hence your observation "very mysterious". (Complicated, or Confusing or Contrary?!) Never mind that you are a "slow burner".

In general, one's diabetic diagnosis attracts a "Type" label, regardless of what the subsequent treatment needs to be. This is pertinent since most T1s routinely are, or quickly become, insulin dependent and in accordance with the NICE Guidance Note (NG17) are specifically referred to a Specialist, usually within a Hospital based Team. This is because insulin dependency and particularly T1s are outside of the normal capability of General Practice. Whereas T2s are routinely treated by GPs and the majority of those are treated with oral meds and relatively few are initially insulin dependent.

One other pretty fundamental aspect of T1 Treatment under NG17 is that T1s become entitled to being provided with Continuous Glucose Monitors (CGM). This is a recent improvement from mid 2022. However T2s who are or become insulin dependent are not routinely entitled to CGM. This is, frankly, not logical nor particularly fair but is in accordance with NICE Guidance. (Confusing or Contrary?)

So it is quite possible your Consultant designated you as T1 aware that made you straightaway eligible for Specialist care along with CGM and by doing that overtaking discussion then about what treatment you might be entitled to. That certainly happened for me. I was discharged from the Surgical Ward after my Whipples Procedure formally designated as T1 and that (in theory) made any Health Care Professionals (HCPs) I encountered aware that I was insulin dependent and entitled to treatment as if T1 - even though I definitely didn't (don't) have the autoimmune condition that brings about a T1 diagnosis. Anyway, the important thing for you is that right now your diagnosis of T1 makes you eligible for the full spectrum of treatment options.

 

[Ellen Palmer]

A belated welcome to the forum from another late starter (53 at diagnosis) with T1.

I am pleased that you are getting Libre as this will help to show you what is happening between your meals. I was very poorly at diagnosis and was put onto insulin straight away, albeit very small doses to start with. Things change over time.

You are at the start of this and will gradually work out what is best for you, and once on insulin can eat as few or as many carbs as you want to, once learning how to match your insulin to what you choose to eat.

Kkep the questions coming. There is a wealth of experience to tap into as you have already seen.

Hi, thank you so much for welcoming me.