Lada

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christine.h

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Relationship to Diabetes
Type 1
Are there any others who have lada after 3 years of professionals not listening i decided to get tested alas i had to pay over 300 pounds told not available on nhs and i was definatly type 2 they were all wrong including one extremly well known one i feel very much alone
 
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Hi Christine, just wanted to say I'm sorry you feel so alone and have had to struggle to get your diagnosis sorted - and what a price too. It's one of the hardest things when the medics don't take what you are saying seriously. I can't help with the Lada issue, but hopefully someone else will be able to later on. Hugs.x
 
That's ok, sometimes it can take a while for anyone to feel able to really offer a helpful answer, I just wanted you to know you aren't alone as we all try to support each other here even if we don't share the exact same experience. x
 
That is god to read that I am 62 and I guess that threw the professionals as well as I was in my late 50's when diagnosed but I did keep saying I felt I was not type two due to how it started but no one seemed to pick it up thank goodness for a letter printed in the magazine when someone else asked to have a test
 
Hi there welcome to the forum christine i think theres at least 4 or 5 other members who are lada so hopefully they will see this and be able to help x
 
Hi Christine,
Iwas diagnosed at 53. I presented with high glucose,ketones and had lost a great deal of weight so I was hospitalised and they tested. My official diagnosis is actually T1. However, I had had symptoms for quite a long time before I was forced to go to the doctors (I stupidly ignored them) so I think that LADA is a better description.
You aren't alone in being initially misdiagnosed , you don't have to be long on forums to realise that. A survey in Australia also found that a third of those who developed T1 as adults were initially diagnosed as type 2.

I have some sympathy with doctors as it isn't always so simple as putting people into 2 boxes, type 1-type2, the labels don't fit everyone, there is a lot of variation. The most important thing is that appropriate treatment is given.(and they haven't really decided what is best for the early stages of LADA) . I think that people who don't fit the normal patterns should at least be followed up with C peptide and antibody testing; though they aren't infallible either. This seems to happen here, but I'm in France, not the UK.
 
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Hi, I'm officially LADA, having first been diagnosed as type 2 in April 2008 by my Dr (because a blood test showed I was just over 7). However in October 2008 I was seen by a consultant for a gall bladder problem and he also did the Diabetes C-peptide and GAD antibodies tests which he says proved to him I was LADA. Now he calls it Latent Auto-immune Diabetes of Adulthood" and says I need to test every morning and if I feel hyper or hypo during the day even though I am still only on medication and can't really do anything about it except be aware of how my BS are acting. My Dr says I can't possibly be what HE calls "Late Onset Type 1" as I'm far too old for this and I'm only to test twice a week (can this be due to the cut backs at all I wonder ?).

They both agree when my BS go up frantically (I'm running in the 7s and low 8s at present) I will progress to insulin. I'm 63, 5ft, 8st 7lbs and otherwise very fit so I can see how the Drs don't recognise me as anything other than odd, as I don't fit the public stereotype of either type and on this Forum we know how wrong these media-arrived-at stereos are don't we ?

I think it is dreadful you had to pay for tests to determine what your diabetes type is but I suppose you now have the satisfaction of knowing, at least. All the very best,
 
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Welcome Christine. As HelenM says, the important thing is getting the right treatment, rather than the right diagnosis. I was also diagnosed with diabetes and put onto insulin, as an adult, but have never been tested for LADA, but I don't really mind, as getting the right insulin regime, monitoring for complications etc is what's important.
 
Hi Christine, I was 52 when diagnosed as Type 2 and had that changed to LADA six months ago. I'm still struggling to get things under any sort of control and have had to fight for strips despite the frequent hypos. I'm currently pill controlled and on a kind of BG roller coaster with my bloods all over the place. It ain't easy and being misdiagnosed didn't help so I know just how you feel.

Misdiagnosis seems a very common occurrence based on a serious and possibly dangerous misconception, folk our age MUST be Type 2, we can't possibly anything else.

Before I had the strips on prescription I had to buy my own. I test at least twice a day now, morning and night, and may test at other times if I feel I may be high or low. When you're on pills there's little you can do to affect things when you're high, but the results are a useful tracking tool to show doctors the trends that aren't apparent if you merely rely on HbA1cs. My roller coaster averages out quite nicely but doesn't show the reality.
 
Does being diagnosed with LADA make a big difference to you treatment?
I'm asking this because what you've described, Alison, sounds a lot like me. I go along to the drop in clinic every so now and then , admitting that i am testing because i feel rough and that my readings are scariliy high (mid teens last time, i hit the big 25 on saturday), and they send me with reassurance to my GP to get an Hba1c done, which they predict will be above 7. It wasn't, it was 6.2 or something. I'm hoping that if i get a higher Hba1c then my GP will up my metformin dose but it never happens.
I've been diagnosed just over 2 years and when i was first diagnosed somebody spotted a ketone and assumed i was type 1. but i responded well to metformin and everybody assumes i'm type 2. I've been wondering for a bit but i doubt my GP will shell out for a blood test.

Rachel
 
Thank you re LADA

Thank you for the replies it is a real help my consultant is great i have to test 4 times a day from now on and in January i will start on insulin i am on insulin and victosa but i am going to meet his nurse to discuss DAFNE on a one to one basis my GAD was 30.5 should less than 1.0
insulin antibodies 9.92 should be less than 0-04
Islet cells were negative
My nurse at the gp practice did not even understand it and i was told by the old consultant sec whom i had to pay is that gps may not have seen it before and do not know how to treat it thank goodness i have been on insulin as well levemir, novarapid and type two meds victosa on onset i had classical type 1 symptoms back in nov 2006 it was 17 the receptionist were so shocked that i was told diet alone by the gp by christmas i was really quite poorly started on metformin but due another condition unable to take tablets the original team i was under one consultant is a leading autority on diebetes and writes lots of books igt has been a long journey and know that i have latent autoimmune disease I already had one autoimmune disease and reading more into this have got another as well as the lada and ben tested for several more. I must admit i feel so ill when my bg is high and when its low get no warning
I am so grateful for all the replies this is a real help to me especially as i live on my own and my family do not really like talking about it
 
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forgot to add

my HB1AC is 8.8. I paid in 2008 to see the consultant in 2008 as HB1AC was 10.10 and gp said it was normal and ok for type 2 i was horrified
 
christine.h said:
my HB1AC is 8.8. I paid in 2008 to see the consultant in 2008 as HB1AC was 10.10 and gp said it was normal and ok for type 2 i was horrified
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That's pretty awful. I was diagnosed in 2008 and mine was 11.8 and considered way too high! If there's anything we can help you, please just let us know. Often people's experiences are a better education than your doctor has ever received. Many of them have never had a Type 1 as a patient, let alone a LADA, so it's not surprising that their knowledge is lacking in this area. But that doesn't mean they can make assumptions based on unsound criteria like age or physical appearance - they should seek additional help from those who have a more specialist knowledge.
 
RachelT said:
Does being diagnosed with LADA make a big difference to you treatment? Rachel
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I can only speak from my own experience but I feel like I'm being monitored more closely being LADA, especially by my Consultant because he was sure I'd be on insulin "by the end of this year" and that was in Oct 2008 so he's interested in how long I can go on with being on metformin and glic.

I'm pretty sure my own surgery would be just as good whatever "Type" I was because I've found they are just one of the good ones.
 
It is a shame the professionals do not listen and act when us patients are telling them thank goodness I am on insulin even a friend of mine who was a nurse said insulin should be the right treatment for me thats after we went on holiday together when diagnosed I had fasted and i was 17% it would have been higher with non fasting that was in 2006 Nov. by Dec it was26 and whilst on holiday where i now live the gp saw me and put me on meds i had lost even more weight had an awful chesty cough and looked really and felt really poorly thank goodness things have improved somewhat even though i still have a way to go need to know how to use novarapid properly had a little bit of help from dietician diabetes nurse who said test before and after a meal then inject after i should have asked how much compared to high reading
 
RachelT said:
Does being diagnosed with LADA make a big difference to you treatment?
I'm asking this because what you've described, Alison, sounds a lot like me. I go along to the drop in clinic every so now and then , admitting that i am testing because i feel rough and that my readings are scariliy high (mid teens last time, i hit the big 25 on saturday), and they send me with reassurance to my GP to get an Hba1c done, which they predict will be above 7. It wasn't, it was 6.2 or something. I'm hoping that if i get a higher Hba1c then my GP will up my metformin dose but it never happens.
I've been diagnosed just over 2 years and when i was first diagnosed somebody spotted a ketone and assumed i was type 1. but i responded well to metformin and everybody assumes i'm type 2. I've been wondering for a bit but i doubt my GP will shell out for a blood test.

Rachel
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As I said elsewhere, I'm beginning to doubt the value of the HbA1c as it only gives an average of your blood sugar levels which doesn't really reflect what's actually happening. Especially with awkward types like me. Perhaps you could ask for GAD and antibody tests to confirm you have the correct diagnosis. If you have the strips, keep a testing log for a while and see what that shows when compared to your HbA results. It was one of the tools I used, along with diet and exercise logs to persuade Dr Idiot to let me have the tests done.

It doesn't change the treatment much in my case, but does mean I'm more closely monitored.
 
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