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Should I push for a LADA diagnosis?

Pinkerbell

Well-Known Member
Messages
56
Location
Cambridge
Type of diabetes
Type 1
Treatment type
Insulin
I was diagnosed with "likely type 1" April 2013, I am 39, with a bmi of around 20 It was my GAD auto antibodies, which my consultant described as "massively high" which led to the conclusion of likely type 1, Since then, having done my research online, I am confused as to why I haven't officially been diagnosed with LADA, as that seems to perfectly describe what is happening to me, I even have a history of autoimmune thyroid disease! I have never seen the same consultant twice and one of them did say in passing "Oh, you have 1.5!" but wouldn't elaborate. Everyone else seems to go out of their way to avoid using terms other than type 1 or 2. Does anyone know why this might be? And is there any benefit to pushing for a LADA or 1.5 diagnosis?
 
The treatment won't change whether you wish to be described as T1, LADA or T1.5. They are very much interchangeable terms. I would guess I am probably officially LADA as I was not diagnosed until I was mid 40's but my records show as T1. Doesn't bother me really. You were fortunate to at least of had the GAD test, many doc's won't do them as too expensive.
 
It's not the treatment that concerns me so much as attitudes and support. I do feel well pretty well looked after by the specialist teams at my local hospital and GP surgery, with the exception of the nutritionist who told me she couldn't give me any advice until I was on insulin. My main gripe is with some non specialist health professionals, who look at me incredulously when I state that I am type one, but not yet on insulin. I've been told it's 'impossible' and am occasionally made to feel as if I'm stupid, lying or both! I think it's possible that if more diagnoses were made, it might raise awareness of this condition. The possibility that I might one day encounter a health professional with that attitude whilst not in fit state to explain my condition is a bit scary.
 
Hi pinkerbell
My interpretation of being LADA is when you are diagnosed as a T1 but are still producing some insulin. Are you on on Insulin?

You could ask for a C-peptide test which is a marker of the amount of insulin produced. I asked my consultant about this, he said there was no point, the GAD test showed I am T1, the fact that i do not yet need to inject insulin means I am producing some insulin and that means I am LADA. The consultant told me to stop taking any medication as they could excelarate my need to go on insulin.

Diagnosed T2 in sept 2013, BS levels 20+. BMI 22, age 58. Went on low carb diet. Requested a GAD test in November, came back very high 2,000+, doc said I would be T1 soon, but presently LADA, and managing to keep 99% of my BS readings one hour after meals under 7.8 without insulin or any medication.

Ian



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The best help and support is here on this forum. Sadly much better than the NHS who's policy is to recommend a balanced meal with around 1/3 carbs. Fortunately my specialist nurse and dr are turning a blind eye to my LcHf diet which is the only reason my pancreas still has some beta cells left. My consultant said.... Whatever you are doing carry on with it because it is working.... Enough said, I guess even he can not break NHS guidelines. Somebody should take the NHS to court..... There is plenty of evidence against their policy.


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I wouldn't have thought attitude and support would be any different if you are called T1 or LADA. If a certain doc doesn't understand why you are not on insulin yet, surely that's their problem, not yours.
 
HI Ian, I was reading your thread on lchf diet with interest! I'm not on insulin yet and they do give me regular cpeptide tests which I'm told are still within an acceptable range, although I don't know the figures. I think they have to do them as I am relying on a drug called repaglinide which forces your body to produce more insulin. I'm a little concerned about forcing my poor beleaguered pancreas to do anything! but metformin didn't agree with me: for some reason, I kept feeling faint and getting readings as low as 1.8 several times a day. This stopped as soon as I came off it and now it never goes any lower than 3.5. Reading through a few threads here, I'm amazed at the variation in care and procedure. I regularly am getting readings in the high teens for several hours after a meal and it is almost always above 10 in the morning and yet they still don't want to start with insulin because my ac1 is acceptable at 6.5% I'm considering the lchf diet, however I have some concerns, firstly my appetite, which is nonexistent during the day due to nausea. My weight, bmi 20 and probably falling and my cholesterol, which I was recently told was a bit high at 6.5. I recently had a fasting test to determine the levels of HDL vs LDL, but don't yet have those figures back. I'm not sure how the lchf diet might impact on my particular circumstances.
 
mo1905 said:
I wouldn't have thought attitude and support would be any different if you are called T1 or LADA. If a certain doc doesn't understand why you are not on insulin yet, surely that's their problem, not yours.
Click to expand...

They might at least have to look it up before dismissing it as a possibility, but I agree, it would take a lot more diagnoses than just mine to change awareness, but if nobody pushes, how can that happen? I'm worried that someone might not consider that I may need insulin in a life threatening emergency because they have never heard of the possibility of someone needing it for the first time in their late 30s
 
Exactly the reason why being labelled T1 is probably better. Ask any member of the public what LADA or T1.5 diabetes is and you will get a very blank stare. Even some doctors have never heard of these terms. I understand your frustration regarding correct diagnosis but to be brutally honest, who is interested in raising awareness for LADA's or T1.5's ? I am in a very similar situation as yourself and all I care about is my treatment really. I'm not suggesting you're wrong in wanting a 100% diagnosis, that's your right and it should happen. All I'm saying is, what good would it do once you know ?
 

Being labelled t1 is certainly better than being termed as t2 with regards to treatment, but at the moment I have absolutely no access to advice from a nutritionist simply because LADA or t1-insulin is not acknowledged. She can provide advice for t1s on insulin and t2s who are not but I have to wait until I fit into one pigeonhole or another before I can get any professional dietary support. I am noticing, however, from reading threads on here, that procedure varies hugely depending on where you live and who you are seen by, so it could well be that a lot of people don't have this problem, and many might be a hell of a lot worse off than me. Regardless of what they call it, it would be nice to see some pooling and collation of information so that guidelines could be set in place, rather than the 'suck it and see' approach. My problem is not so much with what they choose to call it, or even whether I get I full diagnosis, it's just that at the moment, I feel like I fall into a bit grey area which causes my quality of care to fall below that of a t1 on insulin or a t2 living in this area. Hope that makes sense
 
I sort of understand what you say but i can't see how dietary advice would differ between T1, LADA or T1.5. Lowering intake of carbs helps, whatever type you are. This will, or should be, the same advice for any form of diabetes. The only difference is if you go onto insulin, you may need to carb count. I sense your frustration but I honestly can't see how you would be better off being labelled LADA. What do you think would change ? I'm not trying to be funny or anything, just curious
 

I don't think it would change anything for me as an individual in the least! Rather, I am curious as to why it doesn't appear to be diagnosed in the UK (as far as I know) but I do think that if everybody who had it was diagnosed, then that might change things.... If as many people have it as some reports suggest, then it's possible that GPs would get to hear of it and if they've heard of it, they might be more willing to send people for expensive tests that might help them access the care they really need. My own frustration with regard to the nutritionist was that the service was withdrawn from me solely because I don't fit into a category yet. Lowering my carb intake any further without proper advice scares me a bit as I am steadily losing weight as it is and I don't know how to stop it.
 
I guess we sort of agree to disagree. I totally understand that you want a definitive diagnosis but treatment and dietary advice won't change. As for GP's hearing of it, again, it won't change things. Many doctors now refer to patients as "insulin dependant" or "non insulin dependant" diabetics. I think the reason why it's not universally acknowledged in the UK is that it doesn't really matter. As an example, if you broke your arm, there are at least 6 different types of breaks, would it help that you knew which one it was or would you just be happy to get put in plaster ? OK, random example but there you go. I only give my opinion and I'm not saying you're wrong. Each to their own
 
My weight was steadily dropping from pre diagnosis util 6 months after, I initially found that LcHf diet easily controlled my BS levels (averaging under 5 before breakfast) but still loosing weight. I decided to eat lots of meat, almonds, cheese, double cream, mayonnaise aubergines, anything with high calories but low carb. I have since put on a stone in weight, but my pre breakfast readings have gone up to around 6. I also find eating more early and lunch, and less in the evening helps, as does walking, or even just standing, worst thing for pre breakfast BS levels (for me) is sitting down watching tv after a large evening meal, even if I have low carbed.

Have you been following the southportGp thread on low carb diet in general practise. All 19 T2 patients after 12 months lowered their cholesterol and BS levels.

It seems that even specialist diabetic consultants do not know what advise to give us. My consultant said some time back that whatever I do I will end up on insulin, and until then there is really no point seeing him again until I need insulin.... And no point in wasting NHS funds on any further tests as the inevitable will not change. But when you troll through these forums there is clearly a lot you can do. I started off low carbing slowly, but the more I low carbed the more I got my BS levels under control.

Like me, you will be on insulin soon, but I am sure it will be later if you low carb, you will also start to understand carbs in food, which must help when going on insulin.

Just remembered, my consultant also said to me, there are only two types of diabetes, T1 & T2, LADA is just a form of T1.







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I'm not in the UK, I was diagnosed as T1 from the start. The the consultant suggested that it would better be called 1.5 or LADA but the official diagnosis is T1. . I'd probably had the condition for about three years before and had 'self managed' so no drugs just a low GI diet. I started using insulin at diagnosis ,from what I read this is normal in France and some other countries. it was easy to stop the highs however very difficult to stop lows. I'm not unhappy that I started insulin then, it enabled me to have low HbA1cs and that is important. Nine years later it's actually quite a bit easier, I've got used to micromanaging but I don't have so many hypos to cope with.
I think that if I were in the UK, I would prefer a T1 diagnosis simply because courses like DAFNE, access to insulin pumps and even short term use of continuous monitoring don't seem to be available to T2s on insulin (wrong but that's the case)
I do know of one lady who was diagnosed for T2 for several years, was certain she had LADA/T1 and after being re- diagnosed was able to get a pump.
 
This is an area where the NHS is most clueless; they just don't understand that there is a spectrum of states between being born a T1 and having decreasing insulin production due to a slow decline in pancreatic function. If you have a positive GAD then you are a LADA and should be started on insulin as and when tablets are no longer working assuming you are having a low-carb diet to help slow the onset. Your nutritionist doesn't appear to be very clued-up as dietary advice is similar for T1, LADA and T2 i.e. keep the carbs down. What your diagnosis actually is ins't vital but what is important is to go on to insulin when needed. I'm still labelled as a T2 as my GP guessed that by default. I had my own GAD and c-peptide tests done privately and have a negative GAD but very low insulin. I've never been overweight in my life so was never insulin resistant. I went onto insulin a year too late as my GP treated me as a T2 until my HBa1C shot up.
 
I read somewhere that there is a possibility that 10% of all T2 are In fact LADA, this would mean that there are more LADA than T1.

My understanding of a LADA diagnosis is a positive GAD test, which you have had, and the ability to produce your own insulin, which you are. You 'must' therefore be LADA. Somebody please correct me if my conclusion is wrong.

I would question your dr what effect the medication you are taking has. My consultant advised me to stop taking all medication, because he felt that they would likely make the pancreas beta cells die off more quickly.... The medication will act Like squeezing a sponge he said, once squeezed there will be nothing left. But it seems now one really knows.

You will probably find Dr Bernstein's Diabetes Solution a good read. An amazing man.


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Thank you everybody for your input, it's been really interesting. I'm not going to push for a LADA diagnosis at the moment as firstly, I don't think I'll get one in any case! and secondly, as mo1905 pointed out, it won't make any difference to my treatment. My consultants and DSN aren't daft, they know what's going on and they're keeping a really close eye on things.

@Ian DP - I did question my medication on my last visit, however they deem it necessary to keep my BG down in the evenings and are not yet comfortable starting me on insulin because of my daytime fasting levels. Not sure how I feel about it, I think I've been mostly burying my head in the sand for the past 12 months and now I need to face up to it and educate myself. Do you know if the lchf diet might have a negative impact on my Cholesterol? I found out yesterday they want to start me on statins

Interestingly, I have read that a Swansea hospital is trialing LADA diagnoses to try and establish whether it does make a difference to outcomes . it was only a short reference in an online article, so can't be sure of authenticity.

Typing on Android touch keyboard makes posting on forums a bit of a nightmare, it seems to take forever! May have to resurrect laptop :/
 
Pinkerbell said:
. Do you know if the lchf diet might have a negative impact on my Cholesterol? :/
Click to expand...

I am no expert, but from what I have been reading a LcHf diet will often reduce cholesterol levels (they did in all 19 patients of the SouthportGp study) and a fatty liver (cholestrial) can often be caused by high carbs.

LcHf is working for me. Great old fashioned style non processed food, When out and lunching / dining I always ask for my chips to be replaced with veg or salad. Never a problem even in 'computerised' menu selection in pubs etc. pubs are great for LcHf meals, cafés not so good... In general.



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Hi, that's also my understanding. Re your earlier point about mis-diagnosed T2s, yes, around 15% -20% of T2s are not overweight and don't fit the normal insulin resistant T2 pattern. It's reasonable to assume a good proportion of these are LADAs as I am
 
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