Help! Potential LADA, struggling to get a clear diagnosis…

[consero]

Hello everyone,

I am a recently diagnosed 36 year old male, very slim and no history of diabetes in my family apart from an aunt who is overweight with type 2. I was diagnosed following a urine test carried out to see if I had a bacterial infection. I don’t really have any symptoms, apart from possibly going to the toilet slightly more than often.

My doctor has struggled to diagnose me and has said I could be either Slow Evolving type 1 (LADA) or type 2. At my request, he referred me to the hospital to establish which I was. I saw a Senior Registrar, who met me on behalf of one of the consultants. She said she was confident I was a type 2, even though I cannot really understand her reasoning and this was not properly explained.

Given that I am thin and under 40, I do not meet the usual criteria for type 2. One of the dieticians has suggested that I may be a LADA. I suggested the Senior Registrar that I should have antibody testing, but did not agree to this. She felt she could be confident I am type 2 without it, without giving clear reasoning. She also mentioned the cost of the tests and the fact that they would not give a definite diagnosis. She said antibody testing would only be done where keytones had been observed. Instead, she suggested C-peptide testing, but does not proposed to do this for 6-9 months.

I am frustrated that it is now 3 months since I was diagnosed, but I am no closer to having real certainty whether I am type 2 or LADA. I also don’t understand why c-peptide testing is being delayed. My concern is that the necessary tests aren’t being done, perhaps because the hospital is trying to avoid costs. I am also concerned that a proper diagnosis is important to my treatment and in knowing the risk to family members.

I had thought of writing to the Senior Registrar, but she was very dismissive and unwilling to discuss any concerns when I met her. I also thought of writing to the consultant who she met me on behalf of, but am concerned this could lead to unnecessary upset and resentment from the staff.

I would really welcome any comments or advice from other members, as this is worrying me.

Many thanks

Vincent

 

[Paul1976]

Re: Help! Potential LADA, struggling to get a clear diagnosi

Hi Vincent!

Are you in a position to test your blood glucose at home? if you are,what sort of readings are you getting?

regards

Paul

 

[consero]

Re: Help! Potential LADA, struggling to get a clear diagnosi

Hi Paul

Wow that was a quick reply!

I am testing at home. I'm restricting my carbs heavily to achieve readings of around 5.5 to 6 fasting and around 5.5 to 8.5 after meals. I have some exceptions of up to 11 or 12 where I have eaten the wrong foods, as I am still experimenting.

I may need pills at some point, but am trying diet control first.

Thanks
Vincent

 

[Paul1976]

Re: Help! Potential LADA, struggling to get a clear diagnosi

Hi Vincent.

Well done on those readings! You're doing the right thing with experimenting and testing as you are doing as some of us handle the same type of food VERY differently! :crazy:
Did you have a HbA1c test at the doctors by any chance? I was misdiagnosed as type 2 with a HbA1c of 7.5% on diagnosis and my home testing levels kept on getting higher and higher but the nurse didn't see it as a problem but my GP,after seeing my home meter recordings,admitted he thought things weren't as clear cut as first thought and referred me to the consultant at the hospital and I repeated the hbA1c test prior to my first appointment with him-It had jumped up to 14.1%(Almost doubled in 3 months,despite oral meds and low carbing) which struck alarm bells with the consultant who then DID do the C-pep and Antibody tests which indeed showed I had an Autoimmune type of Diabetes and with my age(I'm 36 now) was classed as type 1.5 Lada.
It took a huge jump in my HbA1c to be taken serious so that's why I'm asking you if you have had a HbA1c test as the results of these seem to be what makes the Doctors look and listen.

Paul

 

[consero]

Re: Help! Potential LADA, struggling to get a clear diagnosi

Paul

I had an A1 C test when I was diagnosed and the reading was 79 mmol. (I don't know how that translates as a percentage). The sheet says that the target is 58 mmol. I have only had that one test so far and the next one is due in something like 2 months. It should be lower as I have been implementing a diabetic diet since my last reading. So this probably means I won't be in a position to show A1C increases for some time to come.

So what I gather from your case is that they will be very reluctant to carry out the necessary tests in my case. This means I could have LADA and not know about it for ages potentially, especially if it is developing slowly still (seems quite possible to me).

It makes me wonder whether I should pay privately for the tests. Perhaps I should explore that?

Thanks
Vincent

 

[Paul1976]

Re: Help! Potential LADA, struggling to get a clear diagnosi

Hi again!

I worked out your A1c level to be 9.3% in old terms which shows an average Blood glucose over 3 months of around 14.1mmol give or take,I don't know the costs involved in having the tests done privately sadly and it's true that Lada does develop slowly but the right treatment can and does make all the difference,my best advice,for what it's worth is..Keep testing and if things seem to be deteriorating despite dietary changes and possible oral meds is to Keep making noise until the docs listen as YOU know your body best and when things are not right.There's quite a few Ladas on here who will hopefully also be along to share their experiences too.

All the best

Paul

 

[consero]

Re: Help! Potential LADA, struggling to get a clear diagnosi

Ok thanks Paul

It's useful to know what my A1C result means. Your feedback is much appreciated and I'll certainly keep testing / pursing this concern...

All the best
Vincent

 

[Daibell]

Re: Help! Potential LADA, struggling to get a clear diagnosi

Hi. Sadly the HCPs are far too receptive to the assumption that if you are not born with T1 then you 'must' be a T2. My GP said effectively that when I challenged my T2 diagnosis. I think you will just need to keep a record of your meter readings over the coming months and if you are LADA there will be a noticeable trend upwards and your HbA1c will follow the same route. Armed with that info you can challenge your diagnosis. Fortunately the treatment regime is roughly the same for T2 or LADA e.g. Metformin which will help a bit, then Gliclazide which may or may not help depending on the state of your pancreas (it can only stimulate cells which still exist) and/or Sitagliptin which helps with spikes. After that it's on to the injectables. With LADA it will probably just happen more quickly. BTW having C-Peptide and GAD done privately will cost about £400 the pair; see Medichecks as one example.

 

[consero]

Re: Help! Potential LADA, struggling to get a clear diagnosi

Diabel

Thanks, that's useful. £400 is quite costly, now I can see why the NHS don't want to pay!

I have read on this website that some consultants treat LADAs with Januvia to slow the degredation of islets. This has only been proven effective in mice at this stage, but it may be an example of how having an early diagnosis may help.

One question I have is whether a LADAs will always have BS readings getting worse at such a noticeable rate. Presumably some LADAs may develop more slowly? If the condition does always progress in such a noticeable way, then as you say I can simply watch my readings and nothing more is needed. But the name 'Slow Evolving' suggests this is not necessarily the case?

Thank you for your help.

VIncent

 

[smidge]

Re: Help! Potential LADA, struggling to get a clear diagnosi

Hi Vincent!

I am LADA, diagnosed 3 years ago at age 42. Well, misdiagnosed 3 years ago as Type 2 actually :roll: Basically, like you I am slim, no family history of diabetes etc etc, but still they wnet down the Type 2 route and refused to listen to anything else until I was very ill. Even then, they refused the tests and I had to fight for over a year to get them - the stupid nurse at my doctor's was really surprised when the GAD came back positive for LADA.

There are a few lesser-known indicators of LADA; firstly, most LADAs do not have the other metabolic conditions that are indicative of Type 2 (high blood pressure and high cholestorol). So, if you are slim, no history of diabetes in the family, white and under 45 (or Asian under 25) and you lack the other metabolic conditions, you are probably LADA. Secondly, LADA in its early stages is characterised by pretty good fasting levels (because your basal insulin is usually still working), but shocking spikes after meals (because the first phase insulin is missing). So, even very small amounts of carb make most of us LADAs spike into double figures. For example, a Rich Tea biscuit will take me from 5 ish to 10ish - and don't even get me started on a slice of toast :lol:

It would be worth you testing the effects of a biscuit or slice of toast and recording the results as evidence. Ultimately, if you are LADA, insulin is inevitable eventually and, in my opinion, the sooner the better as there is growing evidence that it gives your pancreas a break and helps slow-down the progression of LADA. They usually say that LADAs will need insulin within 4 years of diagnosis, but many LADAs on this forum found it progressed much quicker than that. I was on insulin within a year, but my progression has slowed down considerably with the help of the insulin and a low-carb diet (less than 50g carb per day).

What carb intake do you have at the moment? If it is low, LADA responds very well to that, but it masks the symptoms and makes it even harder to convince the reluctant medics! I was threatening to sue before I finally got the test to prove I was not Type 2 and needed insulin. Keep on at them. Write to the consultant and explain how unhappy you are with the lack of a proper diagnosis. Explain that not knowing how fast you will progress and what condition you are dealing with is causing you stress. Explain why you believe you are LADA. The more you know and the more persistent you are, the more likely they are to give you the tests you need. Make a fuss! You have a right to know what your condition is so that you can choose the most appropriate treatment.

Good luck and let us know how you get on.

Smidge

 

[consero]

Re: Help! Potential LADA, struggling to get a clear diagnosi

Thank you so much Smidge

Your post is very insightful and certainly re-enforces my initial feeling that I could well be a LADA and am not being given the necessary tests on cost grounds.

I meet the criteria you are describing. I am very sensitive to carbs and get spikes after meals only. I think I am having about 50g of carb a day, but need to start weighing my food to be sure. My fasting levels are always ok. I seem to be able to get good BS figures by having a very restrictive diet. I am very slim, have no significant history of diabetes in the family (one aunt with type 2 who is older and over weight), white, under 45 and lack the other metabolic conditions.

Did your condition worsen quick quickly in the way others have suggested in responding to my query, such that you could see your BS readings getting worse? If so, I could just monitor my BS levels over a few months to establish whether I am a LADA? I’m just not sure how reliable this is.

I will certainly test with the bread / biscuit. Should I test 2 hours after eating each of them?

Many thanks!

Vincent

 

[Daibell]

Re: Help! Potential LADA, struggling to get a clear diagnosi

Hi Consero. I feel there are many questions yet to be answered with regard to LADA particularly the 'maximum' age it is diagnosed and hence the rate of progression from birth. It is a fact that around 20% of those diagnosed as T2 are not overweight etc and hence don't fit the typical criteria of being overweight and hence insulin resistant etc. For example I still question my diagnosis yet I wasn't labelled as T2 until I was 59. Many would say that no one at that age will be a LADA yet I fit most of the criteria e.g. sudden weight loss below my normal slim level, always excercised at the gym and so on. Tablets have not helped that much and hence I have increasingly reduced my carbs to control my sugars although last week I was up to 15mmol 2 hours after a middling meal. My diabetes GP thinks the tablets have helped a lot and of course says reducing my carbs is a waste of time and unnecessary (the ignorance knows no bounds!). So am I LADA or not? I think I may be yet I am now 67. I will be on insulin within a year or so and labelled as another T2 who has progressed to insulin. I suspect LADA does sometimes progress very slowly and many T2s are in fact LADA and the statistics don't reflect this. My nephew was diagnosed as LADA 2 years ago at 22 years so perhaps it's in my family's genes? One day I may spend the £400 to satisfy my curiosity. Good luck with your fight for tests. At 36 it is very reasonable to demand them.

 

[phoenix]

Re: Help! Potential LADA, struggling to get a clear diagnosi

Many would say that no one at that age will be a LADA

Age isn't relevent. There may actually be more cases of T1 in adults than in children... though lots misdiagnosed.
In one study in Sweden they tested all newly diagnosed for antibodies and C peptide. Those positive for antibodies or with a low C peptide were classified as T1. There were 2 peaks , one in those aged 0-9 and the other in 50-80 year olds.Among adults 6.9% had type 1 and 93.1% type 2.Incidences of type 1 diabetes in both children and adults were very high and as high above age 50 years as in children.

There was a similar Italian study which also showed a high incidence in the early fifties (haven't time to look it up now) .

How long LADA takes to develop from the time that blood tests can show higher than normal blood glucose is something that is presumably variable. Those with higher amounts of antibodies have been shown to become insulin dependent more quickly. Most sources seem to say that it takes from a couple of years to 6 years but could be longer.

Personally I was in my early 50s when I was diagnosed with T1 (high ketones, weight loss etc). I wasn't in the UK and was sent to hospital where they did antibody and c peptide and diagnosed T1.
I am certain it was LADA, I had had what I thought was T2 for 3-4 years before that. Interestingly that started with all the classic symptoms including weight loss but which then abated for a while. During that time I ate a conventionally healthy low GI diet.
Then 3 years down the line, I very quickly lost a lot more weight, and an attempt at exercise resulted in high ketones. I think the transition to insulin dependence actually happened fairly quickly . My HbA1c was 'only' 7% so glucose hadn't been sky high in the previous 3 months yet my fasting glucose was in the mid twenties.

To the OP. A c peptide test if done in the early stages might be show insulin as low normal, not a lot of use! Someone with insulin resistance would possibly be producing high amounts of insulin. Someone who has had T2 for a long time and has lost a lot of beta cell function would have a low c peptide result as would someone who had later LADA/T1 GAD antibodies aren't definitive though they are usually present. There is a possibility of other anti bodies..

 

[smidge]

Re: Help! Potential LADA, struggling to get a clear diagnosi

Hi again Vincent!

My progression was very sudden in the end. I was diagnosed as Type 2 on a random blood test for something else entirely. It came back at 11ish and I was told to have a Glucose Tolerance Test. My fasting BG was high 4s (so non diabetic levels), but the post glucose test was 11.8 so I was diagnosed Type 2. My HbA1c was taken and that was in the 5s. A few months later, I had another fasting test which was in the 4s and an HbA1c at 5.4%. I had insisted on seeing a consultant as I didn't believe the Type 2 diagnosis. The consultant offered to undiagnose me as he did not believe I was diabetic :roll: I was refused a testing kit and told I didn't need to test. I was then sent away to come back a year later. In the meantime I was given traditional advice on healthy eating. After about 9 months, I was feeling lousy, constantly tired and was losing weight without trying. My weight had dropped to less than 6.5 stone. I started feeling thirsty and was getting up twice a night for the loo. Finally, something twigged and I thought maybe this is the diabetes and something has gone wrong. I bought some urine test sticks and was really shocked that they were on the deepest colour and stayed there constantly showing that sugar in my urine was very high. After that, I had 3 months of arguing with doctors and nurses and as I lost more and more weight and got more and more ill. My HbA1c at that point was 11 something, so I had gone from 5.4% to over 11% in the space of 9 months. When i got back to see the consultant, he was shocked at the deterioration and the ketones and started me immediately on insulin. Within 3 months, my HbA1c was back in the 5s. I then tested positive for GAD antibodies and was reclassified as type 1 (LADA).

As soon as I started on insulin, my beta cells seemed to revive and kick out more insulin, so I had to backtrack and reduce doses very quickly. Even now, two years after starting on insulin, I have only just increased the injected basal dose back to where I started with it. I use very small amounts (7 units a day). I do still produce some basal of my own as i could manage without basal for around 3 days before my BG would be on the rise. Some days i think I produce more than others, but it is hard to say. The bolus for my meals is essential though otherwise my spikes are horrendous and my basal isn't strong enough to deal with that.

As for testing with the bread or biscuits, it depends how much insulin you are still producing as to how quickly you will return to normal. In the early stages, I was producing enough insulin to return to normal within about 3 hours hence my good HbA1cs and fasting levels. So I would say test at 1 hour and then again at 2 hours to see the difference (not always, just as a test).

Ask any other questions you want.

Smidge

 

[consero]

Re: Help! Potential LADA, struggling to get a clear diagnosi

Phoenix, Daibell and Smidge

Thank you for answering my question about how fast LADA progresses in the BG readings, it is interesting to hear your experiences and knowledge, given I may face something similar.

I have been drafting a letter to the hospital about the antibody and c peptide testing and it strikes me that the key problem will be that they can't see a reason to get an accurate diagnosis. What it comes down to no doubt, is whether the treatment would be different for T2 or LADA. I think their view is that it isn't, so it doesn't matter which you are. They would just propose diet, then pills, then insulin. But my concern is whether an early start on insulin is better if I'm LADA, thereby preserving remaining beta cells. Or perhaps whether certain pills are better for LADA. I think from what I read that this isn't yet accepted medical opinion, therefore even if I ask the hospital about this they will not oblige. Cost may well be a factor for them not starting insulin early. All a bit frustrating due to the lack of firm medical 'facts'. Any comments really welcomed as I think this is the crux of the matter, both in terms of whether they test me or whether I pay for the tests.

Smidge

I tried the test with a rich tea biscuit and slice of white bread. The results were:

Biscuit: 4.8 before eating and 5.7 one hour afterwards

Bread: 4.1 before and 7.8 afterwards

I did both of the tests when my BG levels were quite low and steady. I only tested one hour afterwards as the details online seem to suggest both foods peak after about 30 to 40 minutes. I suppose this shows that I am a lot less sensitive than you, but it's still quite a change for the white bread. Maybe not enough of a change to convince the hospital I need testing! Basically, I think I'm someone who can currently control things through a restrictive diet, but in my mind that doesn't mean I'm not a LADA.

Do you think there is much of interest in the results?

Thanks
VIncent

 

[phoenix]

Re: Help! Potential LADA, struggling to get a clear diagnosi

I don't know if you've seen the Swansea Uni LADA site.
It has links to recent research.
http://www.locallada.swan.ac.uk/latest.html
The 2011 Cockrane review basically said that definitions of LADA and poor quality research meant that there was little good evidence. What there was suggested that

insulin treatment may be preferable compared to sulphonylurea treatment but there is little evidence regarding other forms of treatment

 

[smidge]

Re: Help! Potential LADA, struggling to get a clear diagnosi

Hi Vincent,

Your reaction to bread and biscuit is certainly better than mine has ever been. As you say, this does not rule out LADA, but it does suggest against it - although you might just be in the very early stages.

I think the issues for me were:

Being able to discuss my condition (not some generic Type 2 but different condition) with a Consultant and participating in making educated and informed decisions about my treatment - I didn't feel I could do this without knowing what my condition was. e.g. I might choose insulin to control an autoimmune form of diabetes as my insulin production was insufficient and, in all likelihood, diminishing. However, I might choose not to use insulin for a metabolic form of the condition (Type 2) where the insulin levels in my blood might already be high and where insulin-resistance might be playing a big part. I felt that if i didn't have the tests I would not be able to participate in an informed way in this decision.

Knowing the prognosis was important to me. I was making life choices e.g. working abroad, changing jobs, investing in pension etc etc and I felt that I needed a prognosis in order to assess whether I was making realistic choices. Without a proper diagnosis you cannot have a proper prognosis. Type 2 might take years to progress - and with good management, might not progress to insulin-dependancy at all. LADA on the other hand can be expected to progress to insulin-dependancy within two to six years. Knowing this can help you choose to avoid job changes into things that are unsuitable for insulin-dependant diabetics, for example.

Psychologically, I wanted to manage my diabetes by diet and exercise for as long as I could. It was absolutely soul-destroying to reduce carbs right down and exercise every day and still not be able to control my BG. Then have nurses and doctors suggesting I wasn't trying hard enough and adding in medication that simply did not work e.g. gliclazide.

Finally, on a practical level, many PCTs deny testing equipment and strips to Type 2s, so you cannot monitor the progression of your condition. Therefore, you have to wait 6 months or a year for a set of blood tests to show whether your BG is too high - and if you have LADA, it can progress a long way in that time. As LADA is very spikey, a fasting blood test would miss this and the HbA1c might not look bad until the condition is very advanced and damage has already been done.

That's why I think it is imporatant to know what you are dealing with and that is the case I would make for getting the tests. I was told the GAD test is about £180 - perhaps you could suggest having the GAD test and only having the c-peptide one if the GAD is inconclusive?

Smidge

 

[consero]

Re: Help! Potential LADA, struggling to get a clear diagnosi

Thank you so much Phoenix and Smidge

This feedback is invaluable to me. I have fed all of these points into my letter to the hospital.

I am so glad I found this website and managed to get your help!

Vincent

 

[consero]

Re: Help! Potential LADA, struggling to get a clear diagnosi

Hi All

Just a quick note to say that I wrote to the hospital and used all of your help to set out why I thought they had to do blood tests to establish if I was a LADA. They agreed to do the tests and these confirmed I was a LADA. So I wish to thank you all very much for your help. My next battle is working out how to preserve my islet cells as best as I can - I have posted a new query on this!

Thank you so much
Vincent

 

[ALS]

Hi,
I, too, have found this discussion very helpful - thank you. I am a 58 year old female recently diagnosed with LADA after an initial diagnosis of Type 2. The Type 2 diagnosis was based entirely on my being somewhat overweight and my age but it just didn't make sense to me so I kept questioning the diagnosis based on a family history of having adult onset Type 1 - I had never heard of LADA and neither had any of my family. Fortunately, my GP agreed to investigate further and requested a raft of blood tests, which were brought to the attention of an astute endocrinologist who requested C-peptide and GAD tests. The results confirmed LADA and the diagnosis was changed to Type 1. My GP put me onto Metformin and Glypizide and I have a very low carb diet. BG levels are currently within the normal range with an occasional hypo (below 4), which is readily addressed. I have been told this is likely to change very quickly and that I will need to go onto insulin immediately when it does. It's only six weeks since diagnosis and I'm still trying to make sense of it all. Thank you for helping me with this process.