Unusual diabetes

Nick78

Member
Messages
23
Type of diabetes
LADA
Treatment type
Insulin
Hi has anyone else experienced similar,basically I have been going the doctors on a regular basis since my early teens with the same symptoms bad headaches,always thirsty,always peeing and random weight loss I have had countless blood tests which always came back as they couldn't find anything wrong with me this went on till 2017 when I saw a locum doctor with same symptoms this time though he tested me blood sugars which were 28 and ketones were 5.5 had to go straight hospital where I was diagnosed with LADA diabetes,they are know saying I've got some type of type 2 which I find strange as antibody test said I was type 1 basically I find it strange how over 20 years of having blood tests can fail to pick up diabetes and I have ended up with a degenerative spinal condition and arthritis that according to my GP is down to having unchecked diabetes not happy
 

HSSS

Expert
Messages
7,465
Type of diabetes
Type 2
Treatment type
Diet only
Who is trying to change your antibody positive type 1 diagnosis to type 2? On what basis?

it is shocking it could go undetected for so long. Have you got access to past results? I could see blood glucose levels well above normal for years before I was ever even hba1c tested or investigated and then diagnosed type 2 after yet again going to the drs with unexplained fatigue yet again.
 

Nick78

Member
Messages
23
Type of diabetes
LADA
Treatment type
Insulin
Who is trying to change your antibody positive type 1 diagnosis to type 2? On what basis?

it is shocking it could go undetected for so long. Have you got access to past results? I could see blood glucose levels well above normal for years before I was ever even hba1c tested or investigated and then diagnosed type 2 after yet again going to the drs with unexplained fatigue yet again.
They never tested my blood sugars just sent me for blood tests 2017 when I saw the locum doctor was first time I had sugars tested ,once I was on insulin my headaches etc went away I was under ENT clinic for the headaches put it down to neuralgia I now know its to do with my sugar levels I only get them if my sugars are high,I have questioned the changing of my diagnosis all they keep saying is I am keto prone type 2 or summat,when I was admitted to hospital in 2017 they said I was 100% type 1 due to antibody tests,I have had nothing but problems since I've been diagnosed I went over 18 months initially without any meds my levels were normal but ended up with low hb1 levels due to them telling me to take the lantus at night caused me mental health problems also got autism,they put me on gliclazide since then I need insulin all the time know struggle to keep them where they should be if I ate the same set of meals and took same dose of insulin it would be different every day managed to get libra sensor they weren't going to give me one due to changing my diagnosis to type 2 my graphs are all over the place
 

Nick78

Member
Messages
23
Type of diabetes
LADA
Treatment type
Insulin
Who is trying to change your antibody positive type 1 diagnosis to type 2? On what basis?

it is shocking it could go undetected for so long. Have you got access to past results? I could see blood glucose levels well above normal for years before I was ever even hba1c tested or investigated and then diagnosed type 2 after yet again going to the drs with unexplained fatigue yet again.
I went the GPS around 15 years ago was in a right mess lost 5 stones in 2 weeks was constantly peeing and drinking could hardly stand up I was that weak had a blood test that supposed to test for everything came back couldn't find a thing wrong with me it was like this year in year out till I saw the locum
 
M

Member496333

Guest
Insulin deficient type 1/type 3/LADA etc. and insulin resistant type 2 aren’t mutually exclusive. It’s not unheard of to have both. Commonly referred to as double diabetes.
 

Rokaab

Well-Known Member
Messages
2,159
Type of diabetes
Type 1
Treatment type
Pump
due to changing my diagnosis to type 2 my graphs are all over the place
Who changed it though, your GP or the hospital?
If its your doctor ask to be referred to the hospital - whilst people can be misdiagnosed as Type 1 is its actually quite rare as far I as know, especially since the antibody tests were positive
 

HSSS

Expert
Messages
7,465
Type of diabetes
Type 2
Treatment type
Diet only
You still don’t say who is changing your diagnosis or why. If you don’t know you need to ask and get it explained until it is corrected or you understand it.

Do you still have access to the hospital? Can you phone them directly and ask for an appointment due to the problems you are having. It’s my understanding all type 1 should have this ability in the U.K. ( could be wrong as a type 2) and as far as the hospital are concerned you are type 1 (or if it’s them now saying type 2 they need to explain it to you)

If your surgery first of all failed to test blood sugars for years and if it is now them who are changing your diagnosis (despite the hospital diagnosing it with antibody’s being positive) I’d be asking a lot more questions of my surgery and changing drs/nurse if this is all one person.
 

Nick78

Member
Messages
23
Type of diabetes
LADA
Treatment type
Insulin
You still don’t say who is changing your diagnosis or why. If you don’t know you need to ask and get it explained until it is corrected or you understand it.

Do you still have access to the hospital? Can you phone them directly and ask for an appointment due to the problems you are having. It’s my understanding all type 1 should have this ability in the U.K. ( could be wrong as a type 2) and as far as the hospital are concerned you are type 1 (or if it’s them now saying type 2 they need to explain it to you)

If your surgery first of all failed to test blood sugars for years and if it is now them who are changing your diagnosis (despite the hospital diagnosing it with antibody’s being positive) I’d be asking a lot more questions of my surgery and changing drs/nurse if this is all one person.
Sorry it was hospital that changed it ,when I questioned it I ended up having massive row with the diabetic nurse who told me a week later received a letter stating I was somewhere between one and two ,the endocrinologist who I am under at the hospital said what I had he had only seen twice but in people of African decent which I am not,personally I think they have just put me in a box to suit them as I have had no more tests done so how can they change there diagnosis,what ever I've got has not shown on the many blood tests I've had but I have 100% had this diabetes since at least my early teens I've had shin spots etc since then thought it was just dermatitis Exma,I have had other odd things pop up on my medical records when I had my autism test they fetch everything on you up to look at came up that I had suffered a bleed on the brain I was aware I was in hospital for this had accident at work but I was told I had just suffered a bad concussion and nothing to worry about I haven't been the same since,completely changed my personality and is probably why I got diagnosed with autism,had argument with my parents as they said I was nothing like the way I am know said I was happy and outgoing,I have questioned my GP a number of times but doesn't seem want to discuss it incidentally the chronic headaches I used to suffer from were where I injured my head
 

Nick78

Member
Messages
23
Type of diabetes
LADA
Treatment type
Insulin
Insulin deficient type 1/type 3/LADA etc. and insulin resistant type 2 aren’t mutually exclusive. It’s not unheard of to have both. Commonly referred to as double diabetes.
Sounds about right as most of the time I could control my sugars by diet and exercise but every know and again I'd need insulin before every meal or I'd end up in a mess then it would settle down again been like this year in year out before diagnosis I'd have a few weeks or month where I'd be bad with the symptoms then it would go away and I'd be fine for rest of the year
 

Nick78

Member
Messages
23
Type of diabetes
LADA
Treatment type
Insulin
Who changed it though, your GP or the hospital?
If its your doctor ask to be referred to the hospital - whilst people can be misdiagnosed as Type 1 is its actually quite rare as far I as know, especially since the antibody tests were positive
Hospital changed it
 

Lamont D

Oracle
Messages
15,797
Type of diabetes
Reactive hypoglycemia
Treatment type
I do not have diabetes
Ask your GP to find you a specialist endocrinologist, who has experience with unusual or rare metabolic conditions.
Where they can get the proper tests done!

Stay safe!
 

Nick78

Member
Messages
23
Type of diabetes
LADA
Treatment type
Insulin
Ask your GP to find you a specialist endocrinologist, who has experience with unusual or rare metabolic conditions.
Where they can get the proper tests done!

Stay safe!
The one I've got specialises in diabetes they just don't want to do tests for what ever reason I've had same issue with the chronic pain department they discharged me because none of the meds they were giving me worked, at the time I was buying CBD oil this worked a treat tried to get it on prescription but they refused,was easier to kick me off told me get a tens machine
 

Daibell

Master
Messages
12,642
Type of diabetes
LADA
Treatment type
Insulin
Hi. Obviously it's difficult for us to comment beyond a certain point but it does sound as though you have been badly let down over the years by the GP service and currently by your endo. From what you say you are T1/LADA and need insulin now or shortly. My own diagnosis is formally T2 due to two poor GPs many years ago not listening to me but I am now seeing an endo at the local hospital and he accepts I'm a T1 but the tests don't quite prove it. GAD tests may confirm T1 but a negative GAD doesn't prove you aren't T1. C-Peptide tests are also not very reliable and a urine one may give a different result from a plasma(blood) one. I would ask to be referred to a different endo or if you can afford it go to a private hospital or test lab for GAD and C-Peptide tests. The most important thing is that you are on Basal/Bolus if you need it.
 

HSSS

Expert
Messages
7,465
Type of diabetes
Type 2
Treatment type
Diet only
“Somewhere between type 1 and type 2” is the nurse summarising in her own words. It could mean either LADA/type 1.5 which is basically type 1 but a slow adult onset that can take years but eventually requires insulin. Or it could be some form of MODY (genetic) diabetes or even double diabetes. I’d ask them for the official terminology/diagnosis and a copy of the consultants letter the nurse talked about so you can at least see if that makes more sense once you’ve looked it up.

What tests are they refusing to do now? You’ve had hba1c (which should be at least 6 monthly) and GAD antibody tests. (Once is all it needs there I think).
 

Nick78

Member
Messages
23
Type of diabetes
LADA
Treatment type
Insulin
Hi. Obviously it's difficult for us to comment beyond a certain point but it does sound as though you have been badly let down over the years by the GP service and currently by your endo. From what you say you are T1/LADA and need insulin now or shortly. My own diagnosis is formally T2 due to two poor GPs many years ago not listening to me but I am now seeing an endo at the local hospital and he accepts I'm a T1 but the tests don't quite prove it. GAD tests may confirm T1 but a negative GAD doesn't prove you aren't T1. C-Peptide tests are also not very reliable and a urine one may give a different result from a plasma(blood) one. I would ask to be referred to a different endo or if you can afford it go to a private hospital or test lab for GAD and C-Peptide tests. The most important thing is that you are on Basal/Bolus if you need it.
That's the problem they don't listen its there way or none it doesn't help that every time I go for an appointment its a different DR one of my endocrinologists under studies who all have different opinions I've told them numerous times and my GP that I've had it for years they won't acknowledge it assume you are stupid,I have been on insulin regularly for last 18 month seems to be getting worse or could be due to all the lockdowns and not getting out
 

Nick78

Member
Messages
23
Type of diabetes
LADA
Treatment type
Insulin
“Somewhere between type 1 and type 2” is the nurse summarising in her own words. It could mean either LADA/type 1.5 which is basically type 1 but a slow adult onset that can take years but eventually requires insulin. Or it could be some form of MODY (genetic) diabetes or even double diabetes. I’d ask them for the official terminology/diagnosis and a copy of the consultants letter the nurse talked about so you can at least see if that makes more sense once you’ve looked it up.

What tests are they refusing to do now? You’ve had hba1c (which should be at least 6 monthly) and GAD antibody tests. (Once is all it needs there I think).
I have the letter it was my endocrinologist saying between 1 and 2 ,I have suggested that it's either another type like mody or one linked to autism they just keep saying it's this and take what we tell you which I don't as every time I take the set course of insulin I end up bad,I take it as and when and different amounts depending on my readings this works for me but they won't have it
 

Fenn

Well-Known Member
Messages
1,405
Type of diabetes
Type 1.5
Treatment type
Insulin
Hi, makes little sense to me saying between 1 & 2 as they do not really meet in the middle, I believe I am technically both types but would say I have both T1&T2 not somewhere in the middle. (I’m not at all sure I’m correct)

I do however say I’m somewhere in between but I’m not a professional so can get away with talking nonsense, I would expect better from a specialist, not surprised though, I am losing all faith in doctors lately :(
 
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Nick78

Member
Messages
23
Type of diabetes
LADA
Treatment type
Insulin
Hi, makes little sense to me saying between 1 & 2 as they do not really meet in the middle, I believe I am technically both types but would say I have both T1&T2 not somewhere in the middle. (I’m not at all sure I’m correct)

I do however say I’m somewhere in between but I’m not a professional so can get away with talking nonsense, I would expect better from a specialist, not surprised though, I am losing all faith in doctors lately :(
Same here bud lost faith I had no other tests prior to being diagnosed so how can they claim I am now type 2 that's what bothers me and going 20+ years before getting diagnosed, sadly it's getting more common my partners auntie had advanced bowl cancer she was going the GPs for months kept telling her she had IBS and giving her ant acids incidentally same GP as me,luckily got her in hospital and she ok know
 

Angelofthemarches

Well-Known Member
Messages
848
Type of diabetes
Type 2
Treatment type
Diet only
Dislikes
Horrible shoes
Insulin deficient type 1/type 3/LADA etc. and insulin resistant type 2 aren’t mutually exclusive. It’s not unheard of to have both. Commonly referred to as double diabetes.
The gift that keeps on giving