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A little bit unknown

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C

Ceeque

Member
Hi, bit of a short history really - I have one child (no GD) - T1 and T2 on my paternal side although, not my actual dad. I’m 30 and experienced some traumatic life experiences in 2019.

So… here’s a timeline (related to any blood sugar stuff.)


- Jan 23 2022 - began diet
- Diagnosed pre diabetic 8 Feb 2022 HBa1C 46
- loss of 10kg due to diet (I think?!)
- 10 May HBa1C 57
Was due to be rechecked in a fortnight for diabetic diagnosis.
- became unwell on 17th May 2022 had to attend A&E BG was 21.8 mmol.
- diagnosed T2D at a&e and began 10u Lanctus
- referred to rapid access DN at hospital
- DN nurse and doctor state that T2 shouldn’t have been diagnosed in a&e and have tested for antibodies due to my age.
- now on Lanctus 32U and Metformin modified release (.5G x 2 daily) and Novorapid 8U 3 x a day.

Novorapid and increasing lanctus seem to be the only things that have bought my BG levels down more (they’re not fully down but in early teens rather than late teens/twenties) now.

I guess I’m here because I don’t fit into a group yet and I feel pretty isolated because I don’t know where i actually seek advice as the antibodies tests can take a while.

Anyway, has anyone had similar experiences to me? What was the outcome? metformin and lower levels of lanctus didn’t seem to make much of a difference what really did seem to make a difference was the Novorapid.
 
Yes… there are quite a few of us with similar experiences. Me included. Your antibody test should take around 2-4 weeks I think. Mine have always been around the 2 week mark (had them done twice) with any luck they will provide you with some answers. Mine however were inconclusive so I’ve been stuck not knowing what an earth is happening since sept 20’ been told it could take up to 5 years before it becomes apparent. Did you have a blood c peptide done do you know? This will show the amount of insulin you are producing naturally. I’m currently awaiting on some MODY tests they have so far taken 10 weeks, trust me I know how frustrating it is waiting and worrying, but one thing to remember, your not alone, there are tonnes of us here who struggle and need help and advice and there will always be someone to help, even if your just having a moment, trust me I’ve had many and the support can be an incredible comfort xx
 
Hi and welcome.

Sorry you are a bit up in the air with your diagnosis and it does take a bit of time to get these things straightened out when you are not a straightforward emergency admission with Diabetic Ketoacidosis.... but I would rather avoid the DKA admission and wait a few weeks for the tests to come back before my Type was confirmed than be in a coma and in the mean time you are on an appropriate insulin regime, so you just have to be a bit patient. The important thing is that they are doing those tests as many people are just assumed Type 2 and can't get the doctors to do the tests. It can be a frustrating time but you have a lot to get used to with the insulin regime and testing and hopefully learning to carb count, so my advice would be to just focus on getting used to the basics of managing things until your test results come back and fingers crossed they will make things clearer. I say that because just occasionally the tests can be inconclusive or sometimes not interpreted correctly but it sounds like you are with a good diabetes team at the hospital.

I myself was assumed to be Type 2 at diagnosis. Spent 8 weeks whittling my carb intake down to almost nothing whilst taking Metformin and Gliclazide and my HbA1c went up to 116 from 112 in that short space of time so they then started me on insulin, but it took another month to see the consultant and get the tests don and a further 2 months to get the results and be confirmed Type 1, so yes I can relate to your situation of being in limbo, but there is lots to learn in that interim period and from here on in to be honest. We have members who have been Type 1 for over 50 years and still learning!

I hope you find the forum as informative and supportive as I have. It is a goldmine of lived experience, knowledge, practical tips and support. In fact I would say that there is more practical knowledge here and shared best practice than most medical clinicians have, including some DSNs and consultants, so do tap into it and ask any questions that you have.
This forum has taught me to be my own diabetes expert and to be confident in the decisions that I make. It really has made an enormous difference to how I cope with my diabetes. I hope you get the same benefits from it.
 
Hi @Ceeque - yeah the Cpeptide and antibodies tests do take a while but in the meantime I truly think if you assume you are Type 1 to all intents and purposes until you have it confirmed, I really don't think you'll go far wrong. Were we taking bets, my money's on T1 anyway, no reason whatsoever to say T2 - T1 doesn't have an age limit - 7 months or 70 years, both can get it. As many adults are diagnosed per annum as children.

It's Lantus by the way - no C in the middle. Bearing in mind that the body needs insulin every second of every day of our life and that Novorapid once jabbed in only lasts approx 4.5 hours at the outside, how do you think your body is actually managing to stay living for the balance of every 24 hrs - 24 minus 13.5 is about 10.5hrs - I'd think it was actually mostly due to that Lantus, meself! 😉 🙂

I doubt the metformin is helping at all - but as long as it isn't causing any side effects ie 'gastric' problems - it won't be causing any harm, so just belt and braces for the time being till they have the test results.

If it is Type 1 - all your Beta cells don't drop dead instantly - usually they expire gradually and meanwhile those that are still alive continue to assist the person by still producing insulin, but no-one can tell how much or for how long they'll do it, so everyone who needs these tests has to wait and see and keep testing the blood glucose themselves, until they know one way or the other.
 
Thanks all,

diabetes nurse suggested not to cut out all carbs until we know for certain as she said ketosis isn’t so bad for T2 but shouldn’t be for T1 because obviously from Jan until May 17th I was following an extremely low carb almost keto diet - this was the way I managed to lose weight years ago. And something I found really easy to stick to once I got my head round it. But now I’m to follow a balanced diet of three meals a day at least I guess until they tell me which type I am. I have kept carbs at 150g a day spread over 3 meals. Is that okay?

Based on my BGM my HBA1C is 92.2 so even that is a significant rise since 10th May.

My DSN told me to get the free trial of Libre 2 and she linked it to the hospital systems so they can track it too.

She said all my other blood tests came back normal I.e PCOS and thyroid. I have low folic acid and vit D though. So they’re just waiting for the others.

Thanks for making me feel so welcome. It’s a minefield and I’m determined to control it as much as possible.

Xx
 
trophywench said:
Hi @Ceeque - yeah the Cpeptide and antibodies tests do take a while but in the meantime I truly think if you assume you are Type 1 to all intents and purposes until you have it confirmed, I really don't think you'll go far wrong. Were we taking bets, my money's on T1 anyway, no reason whatsoever to say T2 - T1 doesn't have an age limit - 7 months or 70 years, both can get it. As many adults are diagnosed per annum as children.

It's Lantus by the way - no C in the middle. Bearing in mind that the body needs insulin every second of every day of our life and that Novorapid once jabbed in only lasts approx 4.5 hours at the outside, how do you think your body is actually managing to stay living for the balance of every 24 hrs - 24 minus 13.5 is about 10.5hrs - I'd think it was actually mostly due to that Lantus, meself! 😉 🙂

I doubt the metformin is helping at all - but as long as it isn't causing any side effects ie 'gastric' problems - it won't be causing any harm, so just belt and braces for the time being till they have the test results.

If it is Type 1 - all your Beta cells don't drop dead instantly - usually they expire gradually and meanwhile those that are still alive continue to assist the person by still producing insulin, but no-one can tell how much or for how long they'll do it, so everyone who needs these tests has to wait and see and keep testing the blood glucose themselves, until they know one way or the other.
Click to expand...
We can take bets. I’d love to hear what other people think too!
 
Ceeque said:
We can take bets. I’d love to hear what other people think too!
Click to expand...
My guess would be T1. You're fairly young, lost quite a bit of weight, and they've put you on insulin straight away (and you're using a fair bit of insulin, though that's hard to judge since it varies so much between people). It sounds like they think it's pretty likely you'll turn out to be T1.
 
rebrascora said:
Hi and welcome.

Sorry you are a bit up in the air with your diagnosis and it does take a bit of time to get these things straightened out when you are not a straightforward emergency admission with Diabetic Ketoacidosis.... but I would rather avoid the DKA admission and wait a few weeks for the tests to come back before my Type was confirmed than be in a coma and in the mean time you are on an appropriate insulin regime, so you just have to be a bit patient. The important thing is that they are doing those tests as many people are just assumed Type 2 and can't get the doctors to do the tests. It can be a frustrating time but you have a lot to get used to with the insulin regime and testing and hopefully learning to carb count, so my advice would be to just focus on getting used to the basics of managing things until your test results come back and fingers crossed they will make things clearer. I say that because just occasionally the tests can be inconclusive or sometimes not interpreted correctly but it sounds like you are with a good diabetes team at the hospital.

I myself was assumed to be Type 2 at diagnosis. Spent 8 weeks whittling my carb intake down to almost nothing whilst taking Metformin and Gliclazide and my HbA1c went up to 116 from 112 in that short space of time so they then started me on insulin, but it took another month to see the consultant and get the tests don and a further 2 months to get the results and be confirmed Type 1, so yes I can relate to your situation of being in limbo, but there is lots to learn in that interim period and from here on in to be honest. We have members who have been Type 1 for over 50 years and still learning!

I hope you find the forum as informative and supportive as I have. It is a goldmine of lived experience, knowledge, practical tips and support. In fact I would say that there is more practical knowledge here and shared best practice than most medical clinicians have, including some DSNs and consultants, so do tap into it and ask any questions that you have.
This forum has taught me to be my own diabetes expert and to be confident in the decisions that I make. It really has made an enormous difference to how I cope with my diabetes. I hope you get the same benefits from it.
Click to expand...
It was a planned emergency admission they originally said they’d probably put me on some metformin, but then did blood gasses and began the insulin 10U xx
 
Bruce Stephens said:
My guess would be T1. You're fairly young, lost quite a bit of weight, and they've put you on insulin straight away (and you're using a fair bit of insulin, though that's hard to judge since it varies so much between people). It sounds like they think it's pretty likely you'll turn out to be T1.
Click to expand...
Thanks for your opinion, she did say she has a lot of ‘patients presenting as T2 turning out to be T1’ esp since covid. As far as I’m aware I’ve not had covid but I do remember one day in March I woke up feeling pretty floored and the feeling just hasn’t gone away!

They’re now testing for asthma and fibromyalgia as well!

I was pretty okay before this, I don’t drink or smoke so that’s obviously a plus too!
 
I'd confidently put a tenner on Type 1 and I am not a betting person. In fact I would probably even go so far as to challenge the tests/results if they came back and you were diagnosed Type 2 from them.
It is interesting that you were doing a keto diet prior to being diagnosed and I wonder if this actually saved you from a very sudden DKA event by reducing your need for insulin at the point when your production started experiencing problems.

I would be curious to know if you had Covid in that time period as Type 1 is sometimes believed to be triggered by a virus and there is a close link between Covid and diabetes which is why us diabetics were considered a higher risk. There has been a significant increase in diabetes diagnosis since Covid I believe.
I found that my insulin needs increased significantly over the 3 months after the first vaccine and I am convinced the vaccine triggered my immune system to kill off most of my remaining beta cells.

Look forward with fingers crossed to you getting a conclusive result!
 
I see our posts crossed and you don't know if you had Covid or not but may have.
 
rebrascora said:
I see our posts crossed and you don't know if you had Covid or not but may have.
Click to expand...
Yeah it really does make me wonder because me and my partner had woke up feeling all over body aches etc. we tried to get a drive through test, so had to wait for a home test. So as far as definitely diagnosed, nope. But the likelihood? Maybe possible ‍♀️
 
Hi Ceeque, welcome to the forum.

Sorry to hear that you're in limbo at the moment. It does sound like type 1 but hopefully they'll be able to get your tests back to you as soon as possible so you know what the situation is.

Many people on the forum have had to put up with not knowing their type at the beginning so feel free to have a look around at how others' have coped.

You seem to have a good plan in place so I'd keep going with it and operate as a type 1 and make sure that your health care team are following up with getting you a proper diagnosis as sometimes you do have to push a bit.

Feel free to give us a shout with anything you may need.
 
Not convinced here.... but then I did say I would challenge the results if they came back negative. 🙄
Will go have a look at your other thread....
 
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