Newly diagnosed

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Swizzells2003

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Type 1
Hi all, I was diagnosed yesterday with what my doctor believes to be type 1 (they aren’t sure as I don’t fit the profile…. Whatever that means!)

I have all my medication and blood finger checker thingy …… it’s just all very overwhelming at the moment. I’m waiting for an appointment with the diabetic nurse

Does anyone have any advice while I’m waiting?
 
DON'T PANIC
There is a lot of advice available here and elsewhere, you are not alone, you are amongst many who have been right there and succeeded.
All will be well.
Welcome to the forum.
Ask any question you feel you need to.
 
Swizzells2003 said:
Hi all, I was diagnosed yesterday with what my doctor believes to be type 1 (they aren’t sure as I don’t fit the profile…. Whatever that means!)

I have all my medication and blood finger checker thingy …… it’s just all very overwhelming at the moment. I’m waiting for an appointment with the diabetic nurse

Does anyone have any advice while I’m waiting?
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Welcome @Swizzells2003 What medication do you have? Have they done blood tests to determine your diabetes type? Type 1 can develop at any age. The oldest person to get it was in their 90s! It tends to come on more slowly in adults. I’m not sure what ‘profile’ your doctor is talking about - Type 1 is an auto-immune condition. The trigger isn’t known yet.

What was your HbA1C at diagnosis?
 
@Inka hello, I was called back to the doctors as my blood sugar was 116 (is that what HbA1C is?) I’m on metformin (starting on 1 a day building up to 4) and Glicladzide twice a day. It’s very daunting ……
 
Yes, 116 will be your HbA1C. That’s high, as I expect you were told, but with the right treatment it will come down, so don’t worry 🙂 Have you been referred to a consultant? Have additional blood tests been done to determine your diabetes type? This is important if there’s any doubt. Type 1 needs insulin, and, indeed, in LADA which is a slower-onset form of Type 1, early introduction of insulin can help preserve the remaining beta cells, whereas Gliclazide will burn them out.
 
Swizzells2003 said:
@Inka hello, I was called back to the doctors as my blood sugar was 116 (is that what HbA1C is?) I’m on metformin (starting on 1 a day building up to 4) and Glicladzide twice a day. It’s very daunting ……
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As @Inka says that's odd if they think you're probably type 1.

Did you get that wrong, and they're assuming you're type 2 but don't fit the usual profile (for that)? (The "usual profile" would include being overweight, so if you're slim and active that would be a bit odd. Certainly not impossible, but it would cause a doctor to think about type 1.)
 
Possibly, I’m only 43 and not overweight. I have an urgent referral in place but not heard anything yet.

The nurse described the Gliclazide as insulin in a tablet….is that not the case?

I’m also panicking as both my mum and grandad passed away from pancreatic cancer - I, stupidly, googled the links between the 2 ‍♀️
 
My DSN explained it as glycaside 'squeezing' as much insulin out of your failing pancrease as it can. I was put on it and metformin whilst they did the tests got t1 (which i passed, haha)
For a t1 glycacide will only be useful for a short time, and may not lower your blood sugar enough, but it can keep you ticking over till they sort you out with insulin injections, which you soon get used to.
It does get easier
 
Swizzells2003 said:
The nurse described the Gliclazide as insulin in a tablet….is that not the case?
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It stimulates the pancreas to produce more insulin. So kind of, I guess. https://www.nhs.uk/medicines/gliclazide/about-gliclazide/

(I should emphasise that I'm in no way medically trained so maybe what you're being prescribed is completely normal even if they think you're likely type 1. It feels like the kind of thing that might well be part of the guideline.)
 
Welcome to the forum from a late starter with T1.
It will be good for you to have a correct diagnosis.
As others have said the treatment is different for T1 from those for T2.

Insulin can only be delivered to us via injection. If T1, Gliclazide will work your remaining beta cells harder and tire then out more quickly. The sooner you have a confirmation of your diagnosis the better.

Keep in touch and let us know how you get on.
 
Swizzells2003 said:
Possibly, I’m only 43 and not overweight. I have an urgent referral in place but not heard anything yet.

The nurse described the Gliclazide as insulin in a tablet….is that not the case?

I’m also panicking as both my mum and grandad passed away from pancreatic cancer - I, stupidly, googled the links between the 2 ‍♀️
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No, insulin only comes in injections (insulin would be destroyed by the stomach before it could do its job if we swallowed it). Gliclazide isn’t a good idea if you’re Type 1 as it will exhaust your remaining beta cells. Metformin is rarely used for Type 1s because it works to reduce insulin resistance. Type 1s aren’t resistant to insulin. The problem is that our immune systems have attacked and killed our beta cells so we can’t produce enough insulin - hence the need to inject it.

Sorry about your mum and grandad xx
 
Bruce Stephens said:
It stimulates the pancreas to produce more insulin. So kind of, I guess. https://www.nhs.uk/medicines/gliclazide/about-gliclazide/

(I should emphasise that I'm in no way medically trained so maybe what you're being prescribed is completely normal even if they think you're likely type 1. It feels like the kind of thing that might well be part of the guideline.)
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I doubt it. IMO, some adults with suspected Type 1 are messed around far too long before they get the correct diagnosis and treatment. The comment about ‘profile’ probably relates to age, which is stupid because loads of people are diagnosed in their 40s, 50s and older.
 
Swizzells2003 said:
Possibly, I’m only 43 and not overweight. I have an urgent referral in place but not heard anything yet.
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Welcome to the forum @Swizzells2003 (if you do end up being T1, your username may come in handy as a hypo treatment from time to time :rofl: )

Like others, I'm a little confused by the metformin and gliclazide if your Dr is pretty sure you are T1. Your elevated HbA1c (if you are T1) might suggest that you have already lost quite a bit of beta cell mass, which means there is less 'oomph' in your pancreas for the gliclazide to work on.

Hope you get that referral through, and you get some clarity over your diagnosis very soon.
 
I was told that my profile matched typical t1... I am of slim build and had sudden on set of t1 with all the classic signs; extreme sudden weight loss, night time urination and lots of it, thirst etc.

The doctors said to me that t1's tend to be slim while t2's is more common to not be slim which makes sense as t2 is more diet related.

If you're offended by this please don't be, I'm just passing on the information I was told
 
UnexpectedDiagnosis said:
I was told that my profile matched typical t1... I am of slim build and had sudden on set of t1 with all the classic signs; extreme sudden weight loss, night time urination and lots of it, thirst etc.

The doctors said to me that t1's tend to be slim while t2's is more common to not be slim which makes sense as t2 is more diet related.

If you're offended by this please don't be, I'm just passing on the information I was told
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T1s can be any weight at diagnosis. Though it is more common for T1s to have lost weight immediately before diagnosis, which may partly explain your doctors confusion.

T2 is a lot more complicated than just "diet related". There are various discussions within the forum (and elsewhere) about whether there are multiple types of T2. There is often a significant genetic element with T2 running in families. My grandad (maternal grandfather) was underweight when diagnosed with T2, and my dad (also diagnosed with T2) has never been overweight - the male line in my family tends to be skinny.
 
42istheanswer said:
My grandad (maternal grandfather) was underweight when diagnosed with T2, and my dad (also diagnosed with T2) has never been overweight - the male line in my family tends to be skinny.
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Do you never wonder if they might have been misdiagnosed Type 1s who were just never tested (GAD and C-pep) because there was no testing in those days? I am sure there are way more adult Type 1s who were/are misdiagnosed and never get it correctly identified and of course, because they then "provide" future generations with a family history of Type 2.... the misdiagnosis can even roll on to following generations. ie. Your Dad was assumed Type 2 because your Grandad was a slim Type 2, when they both might have been slow onset Type 1s, that were just never tested. We know that some LADA can actually manage without insulin for many years, particularly if they make drastic dietary changes. Not saying this is the case in your family, but you can surely see how easily it could happen, especially in an era when Type 1 was largely considered juvenile diabetes. We place so much store on that category of diabetes we are allocated when it is really only the opinion of one person who may or may not have all the info and experience to make that decision, but whatever they decide can follow people around for the rest of their lives and future generations and be quite difficult to correct if it is wrong.
We hear of plenty of people here on the forum battling to get the correct diagnosis over many years and the forum membership is a very small percentage, so I suspect there are very many more out there.
 
rebrascora said:
Do you never wonder if they might have been misdiagnosed Type 1s who were just never tested (GAD and C-pep) because there was no testing in those days? I am sure there are way more adult Type 1s who were/are misdiagnosed and never get it correctly identified and of course, because they then "provide" future generations with a family history of Type 2.... the misdiagnosis can even roll on to following generations. ie. Your Dad was assumed Type 2 because your Grandad was a slim Type 2, when they both might have been slow onset Type 1s, that were just never tested. We know that some LADA can actually manage without insulin for many years, particularly if they make drastic dietary changes. Not saying this is the case in your family, but you can surely see how easily it could happen, especially in an era when Type 1 was largely considered juvenile diabetes. We place so much store on that category of diabetes we are allocated when it is really only the opinion of one person who may or may not have all the info and experience to make that decision, but whatever they decide can follow people around for the rest of their lives and future generations and be quite difficult to correct if it is wrong.
We hear of plenty of people here on the forum battling to get the correct diagnosis over many years and the forum membership is a very small percentage, so I suspect there are very many more out there.
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I think you missed the maternal for grandfather, my dad and my grandad are not related 😉

Tbh I have no idea really for my grandad. My mum has so far not tested as being even pre-diabetic. Grandad was on insulin for I think 6 months after he had a heart attack, as was standard, but then back on type 2 meds. In my opinion he was sleepy a bit often in the afternoons but it's difficult to know if that was BG or related to his myasthenia gravis.

My dad is "diet controlled" except he isn't following what we would consider low carb... HbA1c higher than I would like mine (consistently in 50s) but GP hasn't suggested reducing carbs further from what my dad says, or seemingly tried to persuade him to try medication. (But I know he has refused statins so possible he has also declined a tentative offer of medication but not admitted that to me.) My twin brother (also skinny) was previously pre-diabetic but reversed by going low carb and very low sugar. (The only reason really that I know I wasn't pre-diabetic 3-4 years ish before my diagnosis is because I requested a check due to his having being pre-diabetic)
 
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