Wrongly Diagnosed?

JennieS

Well-Known Member
Messages
49
Type of diabetes
Type 1
Treatment type
Insulin
You can't just sit back on this. You need to go somewhere and get help

It came out of the blue for me too. That doesn't make it less happen. It is what it is and your bs levels are telling you your body is not functioning right. It doesn't matter why. It is what it is and needs to be addressed.

Not to scare you but I was on a drug much like you and as I meantioned it was ineffective. I believe it burnt out the remaining beta cells I did have and straight to insulin I went. Plenty of doctors misdiagnose type 1. I actually won a law suit with them as they left me for almost dead!! Get the tests.

The earliest i can get in to see the diabetic doctor at my GP is on the 21st
 

Jamesuk9

Well-Known Member
Messages
504
Type of diabetes
Prediabetes
Treatment type
Diet only
The earliest i can get in to see the diabetic doctor at my GP is on the 21st

Then you need to take yourself to A&E. A level that high needs addressing urgently. DKA is life threatening.
 
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JennieS

Well-Known Member
Messages
49
Type of diabetes
Type 1
Treatment type
Insulin
I was told I had Type 2 last Oct as a then 32 year old, I am overweight but never considered myself overly unhealthy in terms of fitness, I regularly play tennis went swimming once a week, someone who always walked upstairs rather than taking the lift. my reading at the time was 11.1% fast forward to early feb I went back to hosp they took more tests including GAD this time, my average bloods were now at 6.4% which everyone thought was great, taking 2 metformin 500mg twice a day. However I got a phone call today saying my GAD is high and that I am actually type 1 which has come as a huge shock and given I am still managing my levels on the tablets I am not sure what to think myself.. Perhaps I should get a re-run of the test.

I think i'm gonna have to ring my GP again and see if i can get in asap because i'm feeling worse than i ever have
 

Kristin251

Expert
Messages
5,334
Type of diabetes
LADA
Treatment type
Insulin
Since being diagnosed i have lost 6 stone and my levels are going higher when i was told it should help my levels
Sudden severe weight loss is a huge indicator for type 1/ LADA. I lost 22#s in a very short time. Weighed 94 at DX. Skin and bones. Gross!!
I was told I had Type 2 last Oct as a then 32 year old, I am overweight but never considered myself overly unhealthy in terms of fitness, I regularly play tennis went swimming once a week, someone who always walked upstairs rather than taking the lift. my reading at the time was 11.1% fast forward to early feb I went back to hosp they took more tests including GAD this time, my average bloods were now at 6.4% which everyone thought was great, taking 2 metformin 500mg twice a day. However I got a phone call today saying my GAD is high and that I am actually type 1 which has come as a huge shock and given I am still managing my levels on the tablets I am not sure what to think myself.. Perhaps I should get a re-run of the test.
The GAD determines antibodies and the cpeptide determines your own insulin output. If your cpeptide is normal ( sounds like it's still functioning ) then you can probably get away with a little help from met for awhile. Things may change in time or they may not.
 

Kristin251

Expert
Messages
5,334
Type of diabetes
LADA
Treatment type
Insulin
I think i'm gonna have to ring my GP again and see if i can get in asap because i'm feeling worse than i ever have
Brilliant!! To mention loads of docs are reluctant to do those tests. No clue why but be prepared to stand firm and insist
 
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JennieS

Well-Known Member
Messages
49
Type of diabetes
Type 1
Treatment type
Insulin
Brilliant!! To mention loads of docs are reluctant to do those tests. No clue why but be prepared to stand firm and insist

If not then i will have to wait until the 21st as that is the soonest they can see me
 

azure

Expert
Messages
9,780
Type of diabetes
Type 1
Treatment type
Pump
I was diagnosed at the hospital and i know they're high. I have just done a finger prick before lunch and my levels are 26 at the moment and that's after taking my medication earlier, i'm just getting very annoyed with alm the messing around they are doing with me

Then you need urgent attention and a ketone test. Go to A and E or your doctor and explain that your sugar is very high, that you think you might be Type 1 and that you're feeling rough.
 

Kristin251

Expert
Messages
5,334
Type of diabetes
LADA
Treatment type
Insulin
Then you need urgent attention and a ketone test. Go to A and E or your doctor and explain that your sugar is very high. That you think you might be Type 1 and that you're feeling rough.
Bingo!!!
IMO the 21st is too far away. Trust me, I've been there done that
 

azure

Expert
Messages
9,780
Type of diabetes
Type 1
Treatment type
Pump
If not then i will have to wait until the 21st as that is the soonest they can see me

No, do not wait until then! As a comparison, I have Type 1 and when I was diagnosed after an emergency doctor call out, my blood sugar was 25,

You need to be seen now.
 

azure

Expert
Messages
9,780
Type of diabetes
Type 1
Treatment type
Pump
@cireland GAD (antibodies) mean you're Type 1. If you're an adult, it can come on slowly and some people can even avoid insulin for a while, but they're still Type 1.

Have you seen a consultant? If not, push to see one as Type 1 needs specialist input.
 

JennieS

Well-Known Member
Messages
49
Type of diabetes
Type 1
Treatment type
Insulin
@cireland GAD (antibodies) mean you're Type 1. If you're an adult, it can come on slowly and some people can even avoid insulin for a while, but they're still Type 1.

Have you seen a consultant? If not, push to see one as Type 1 needs specialist input.

No i've never seen a consultant, when i was diagnosed in the hospital, i never saw anyone from the diabetic team as they sent me home at 2am on a Friday night/morning and i only saw the nurse at my GP's on the Monday after i called that morning saying i've been told i need to see the diabetic nurse that day only for the receptionist to have a go at me asking me if i think i am special as you can't get an appointment the same day with the nurse it took me 2 hours for them to agree to see me that day
 

azure

Expert
Messages
9,780
Type of diabetes
Type 1
Treatment type
Pump
@JenLou Forget that for now. If your blood sugar is 26 and your medication isn't helping, you need to see a doctor as soon as you can.
 

JennieS

Well-Known Member
Messages
49
Type of diabetes
Type 1
Treatment type
Insulin
@JenLou Forget that for now. If your blood sugar is 26 and your medication isn't helping, you need to see a doctor as soon as you can.

I'm waiting for my GP to call me back but i'm not hopeful about it happening today
 

Bluetit1802

Legend
Messages
25,216
Type of diabetes
Type 2 (in remission!)
Treatment type
Diet only
I'm waiting for my GP to call me back but i'm not hopeful about it happening today

Then go to A&E or an emergency centre, and if I were you, I would go today. Your health is at stake.
 

cireland

Active Member
Messages
27
Type of diabetes
LADA
Treatment type
Tablets (oral)
@cireland GAD (antibodies) mean you're Type 1. If you're an adult, it can come on slowly and some people can even avoid insulin for a while, but they're still Type 1.

Have you seen a consultant? If not, push to see one as Type 1 needs specialist input.

@azure No they told me on the phone this morning but I am booked in for the 21st so will see them then. I'm hoping that my pills will keep me going for while am just going to do blood test more often between now and the appointment as I was just doing it a couple of times a week, interestingly my blood was 5.0 pre dinner and 6.2 2 hours after so long may it continue! As I just can't fathom having to inject myself and have to work out dosage levels and hypos etc. Need to process it all....
 

azure

Expert
Messages
9,780
Type of diabetes
Type 1
Treatment type
Pump
@azure No they told me on the phone this morning but I am booked in for the 21st so will see them then. I'm hoping that my pills will keep me going for while am just going to do blood test more often between now and the appointment as I was just doing it a couple of times a week, interestingly my blood was 5.0 pre dinner and 6.2 2 hours after so long may it continue! As I just can't fathom having to inject myself and have to work out dosage levels and hypos etc. Need to process it all....

Don't be afraid of insulin @cireland It's not half as scary as people imagine (and that's speaking as someone with a needle phobia). It can also preserve any beta cells for longer.

Lots of testing is a good idea, along with recording what you eat, as that will provide useful information for your appointment.

Do let us know how your appointment goes :) If you're looking for a book about Type 1, Think Like A Pancreas is a fantastic one :)
 
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JennieS

Well-Known Member
Messages
49
Type of diabetes
Type 1
Treatment type
Insulin
Don't be afraid of insulin. It's not half as scary as people imagine (and that's speaking as someone with a needle phobia). It can also preserve any beta cells for longer.

Lots of testing is a good idea, along with recording what you eat, as that will provide useful information for your appointment.

Do let us know how your appointment goes :) If you're looking for a book about Type 1, Think Like A Pancreas is a fantastic one :)

I'll be fine with Insulin as i already have to inject