Help! Type 1/Lada or Type 2

[slummymummy]

Hi Guys,
Apologies in advance.....this is long but has been going on nearly 5 years :-(
I need some help......nearly 5 years ago the other half was diagnosed with type 2. Aged 39, bmi of 25, no family history of type 2. We started on low gi and this worked for about 8 months, then needed glucophage. This stopped working and so a higher dose was prescribed. I queried type 1.5 and was fobbed off. Routine bloods rarely offered and increased amounts of glucophage were added and we resorted to low carbing in an effort to control the blood sugars but this has become more and more difficult. Glucophage was swapped to metformin. Each time other half has seen GP, he has prescribed more meds without carrying out blood tests and this is concerning me as they have no baseline or evidence of whether what they are prescribing is actually having any effect; only basing it on other half's home testing. Problem is, GP keeps changing and there is little continuity or consistecy in the care provided. No-one at the practice seems to have much knowledge or understanding of a chronic condition such as this. No-one seems to see or believe that my other half is literally eating no carbs and cannot control the blood sugars despite the fact that he is skin and bone!

Fast forward on to September 2011, finally got to see a 'specialist'. Other half down to bmi of 22 and weighing 66kg. Bloods prior to visit detected significant B12 deficiency which was ignored by specialist. Metformin dose increased to maximum and gliclazide added. (b12 levels below 80 and feeling terrible!!) Blood sugars around 13 regularly. Same specialist seen again in January 2012, no mention of B12 deficiency and wanted to add Januvia without any bloods since September 2011.

Fast forward to Jan 2012, saw a different specialist in a different health authority for B12 deficiency; initially thought that B12 would be down to metformin and discussed stopping metformin and increasing gliclazide and seeing what happened for 6 months!!!! Shock and horror from me! They didn't want to contradict what another health authority said but felt that the wrong treatment was being prescribed and would discuss at a team meeting......Received a phonecall 3 weeks ago from a doctor at the hospital who wanted to test for type 1 (GAD antibodies and Coeliac). Concluded that B12 deficiency not due to metformin, gliclazide titrated to 160mg twice daily and continue metformin. Finally, I felt someone was actually beginning to listen to us.

GAD has come back as 'low positive' with a level of 21(normal range is <5). Phoned hospital today as GAD results received yesterday from GP who dismissed them. Hospital have said this is apparently not totally indicative as type 1 and they just want to continue the same meds of metformin and gliclazide and not look to carry out any further tests at this stage. Should we be asking for C-Peptide? I was under the impression that as antibodies were present, this indicated type 1? I am becoming concerned that this is being allowed to drag on and on with no definitive diagnosis - it almost feels like we have to wait for some sort of crisis to occur before anyone does something!

Also been tested for instrinsic factor antibodies - negative but had positive parietal cell antibodies. Just having course of B12 which we had to literally beg for. Coeliac tests came back as IGA Endomys AB - Negative but IGA 3.07 (range 0.8-3.0) however, due to the low carbing, other half barely eats anything containing gluten as blood sugars would be totally off the scale and as such I understand this may have affected the test results; we have not had the opportunity to discuss this with the specialist as yet. Other half was literally phoned by the hospital and told to go and have the tests.

GP as usual completley unhelpful. Had to ask us when we discussed LADA and GAD what they were when we went to see him - slightly unnerving! So, am I being a totally paranoid partner, or am I right to pursue this and ask for further testing? I have never come across anyone as comitted to this strict diet I have imposed in an effort to try and control the bloods and whilst it worked initially, it no longer does; despite meds being added and increased. I cannot realistically see how it can be type 2.

I would really appreciate your thoughts and help.

Many thanks in advance.

 

[viviennem]

I'm sorry I can't help you much with this, being a bog-standard Type 2, but in my opinion you are quite right to pursue this - I'd be making a lot of noise about it by now!

Does your OH have the regular blood tests, eye tests, nerve tests, cholesterol etc that he's supposed to have? I have them every 3 months, but in any case everyone should have them at least once a year. He is entitled to see those results, so get him to ask for them at the surgery - as far back as you can get them. And don't let them charge!

I'd also buy some Ketostix (from your local pharmacy) and keep an eye on his ketones. It's quite normal for a low carber to show some ketones, as I'm sure you know, but if he shows a lot with high blood sugars - particularly if he's feeling ill -, in your place I'd forget all else and go to A&E. They'll take you seriously.

In your GP's defence - they are, after all, General Practitioners, and can't know everything. But if they know they don't know, they should have referred him to a specialist immediately - the delay IS inexcusable.

Good luck to both of you - keep persevering!

Viv 8)

 

[smidge]

Hi Slummymummy!

I don't have much time to respond fully at the moment, but will try to make time over the weekend. I just wanted to tell you a couple of things quickly:

1. You are almost certainly correct and LADA is frequently misdiagnosed as Type 2.
2. A positive GAD test is conclusive as Type 1. A negative GAD test does not rule out Type 1. The levels of GAD antibodies are not important in diagnosis. Levels just give you the prognosis. Presence of antibodies is the critical thing.
3. A fasting insulin test or a c-peptide test would show how much insulin your partner is producing. Insist on this. You cannot have the fasting insulin test once you start injecting insulin because it cannot differentiate between your own insulin and injected insulin, but either would work for your situation at the moment. An uncontrolled Type 2 not in need of insulin therapy would have high levels of insulin as well as high BGs, LADA will have low levels of insulin with high BGs. (It is different once type 2 has progressed to needing insulin as then not enough insulin is produced). Either way, it will tell you if your partner needs insulin.
4. Make a big fuss. As to sit down with a consultant to discuss your belief that your partner needs insulin.

Good luck
Smidge

 

[Ali H]

I am in the same boat, 2 Gliclazide were doing their job then it all went haywire. Metformin SR added, nothing, Januvia, nothing, I am still sat here eating under 100 carbs a day and getting double figure readings 3 hours after a low carb meal.

Luckily we have Benenden friendly society cover so I am off to see an endocrinologist privately, I just cannot take the feeling of exhaustion, dizziness, headache as well as the horrible spots in places you don't want spots/boil type things etc!

So I would push for a referral and get the proper tests done to finally sort it out. Our GPs are great but just adding a different med for a month and seeing if it works means the whole process is just dragging on and on and on and on. I care for my parents too so I cannot be a zombie indefinitely! I just want to know what is going on and what will bring the levels down.

Best of luck.

Ali

 

[slummymummy]

Hi viviennem,
Many thanks for taking the time to read my vast post and for replying.

He has the annual diabetic retinopathy screening and since September 2011 has been receiving more regular blood tests following his request to be referred to see a specialist as things were not going well with his treatment and the GP Practice. He has been under 'the care' of his GP practice predominantly since Nov 2007 (having been seen twice by a specialist who discharged him in Nov 2007 as his control was so good and his bloods were classed as virtually non-diabetic with low gi).

As he has needed intervention with meds and increased meds, and moving from low gi to low carbing, he has been dealt with by the GP practice and has been 'treated' by a number of different GP's at the practice becuase they have 'moved on' as such, I am concerned that he has slipped by the wayside so to speak. The right hand doesn't seem to know what the left hand is doing and it would appear that they do not understand how to treat a chronic condition such as diabetes as their population is an artificially young population (forces) and as such diabetes is not a condition they regularly have to contend with. I am incredibly concerned with the treatment and lack of routine bloods that he has received; particularly during the last 3.5 years and am sick of us being fobbed off.

When we saw the specialist following his initial diagnosis, she saw no reason for him to need meds for a considerable number of years until he was no longer physically able to exercise to the same extent etc. I knew when 8 months later when he hadn't stopped following low gi and was still exercising in the gym everyday, that this was potentially LADA, but no-one will listen to me.

I know that a GP cannot be expected to be an expert in all fields but trying to even get a referral has been a complete nightmare...we have had requests from the GP 'mysteriously' not arriving with the hospital etc etc and the whole process of contradictory ideas between one Dr and another is not helpful. Now we have this positive antibody test, I just want them to do something with it as the longer this goes on, the more damage is being caused by having uncontrolled blood sugars.

I will take your advice and buy some Ketostix tomorrow.

Many thanks once again for taking the time to read and reply.

Slummymummy

 

[slummymummy]

Hi Smidge,
Many thanks for reading my horrendously long tale of woe and taking the time to reply; it is much appreciated.

Can I double check with you just so that I know I have this right in my head (as these dr's are starting to make me doubt my own knowledge and understanding!!) You will not get a positive GAD antibody test if you do not have type 1 or 1.5?

Whilst a C-Peptide test or fasting insulin test would be useful in ascertaining insulin levels (and believe you me, I will be insisting on this!) - it is not necessary to diagnose type 1/1.5? I was really under the impression that the positive GAD antibody test meant categorically that he was type 1 or 1.5 but the DR we spoke to at the hospital has said otherwise and that other tests would need to be carried out which they aren't intending to do at this stage. He didn't tell my husband what other tests this might include.

Other half is now on maximum metformin and gliclazide 160mg x 2 daily and his bloods are still 11's and 13's 2 hours post prandial with a virtual non carb meal. His next appointment with the specialist isn't until July.....I cannot leave him with blood sugars like this for another 3 months. He eats no potatoes, bread, pasta, rice whatsoever. Literally just meat, dairy and veg.

 

[slummymummy]

Hi Ali,
Sorry to hear you are suffering the same at your end. At least you have private medical insurance as an alternative medium.

Unfortunately, our hands are tied as other half is in the armed forces and has to use the medical services they provide. Hence why we have had lots of changes in DR as the service ones have been posted. The civilian ones tend to be elderly and it would appear they undertand little about the need to keep updated with CPD. Equally frustrating is the fact they are so hesitant to actually refer to a specialist. I could cope with a GP putting his hands up and saying he didn't know what to do and as such make a referral.

The problem is, having now got the referral, the people he has seen can't seem to make their minds up and are contradicting one another on treatment. At the end of January, he saw a registrar locally who was convinced that the B12 deficiency was due to metformin and when my husband came home and told me he wanted him to stop the metformin for 6 months and 'see what happens' as far as the B12 levels were concerned, I could not believe what I was hearing. Despite the fact that my husband told him he was regularly getting blood sugars in the 13-14 range, he wanted him to stop metformin!! This registrar was not even considering testing for any other possiblilities for a B12 deficiency. It was only when I was so disgusted with this latest idea, that I insisted I accompany my husband to see the GP and requested intrinsic factor, parietal cells etc etc that any other tests were done. Then seemingly out of nowhere, six weeks later, we receive a phonecall from the hospital asking for GAD and coeliac to be tested for......and again they don't seem to be wanting to act on the results. I am at a complete loss as to what to do!

I hope you start to see some progress from your end by going privately. This is truly a frustrating condition that is not helped by certain medical professionals!

 

[thetallerpaul]

Slummymummy,

I'm new to all this myself so won't say what to do but I was misdiagnosed as Type 2 and cut my carbs to nothing. Long and short of it was it did me more harm than good. To much info alert so look away now. It gave me starvation ketones and bright yellow fatty bowel movements all of which confused the issue and slowed down my diagnosis. I lost a lot of weight for me (BMI below 20) and was shattered all the time. I would have been better off in the end eating more normally, keeping the rest of my body healthy and allowing the higher BG's to force the issue with the Doctors as I got my fasting levels to 8 or 9 so they could say 'hmm maybe the first reading was because he was ill'. Instead I ended up in A&E.

If I had my time again on that I would eat more, record it all in detail in food diary then I would have been stronger, there would have been less issues on my bloods to confuse the issue and the higher BG's would have forced the Docs off the fence they were sat on.

Hope it all works out and they can get him back to a normal lifestyle soon.

Paul

 

[phoenix]

I was under the impression that as antibodies were present, this indicated type 1? I am becoming concerned that this is being allowed to drag on and on with no definitive diagnosis - it almost feels like we have to wait for some sort of crisis to occur before anyone does something!

GAD antibodies are not necessarily definitive. There are people without diabetes that have them and they are also present as a marker in at least one other condition(stiff person syndrome).
I understand that higher amounts of antibodies are more indicative of an early progression to insulin and hence LADA.(unfortunately try as I can, I haven't found how many these amount to in the units that are used in the UK... research papers use at least 3 different units in research papers and I understand that that there are different methods of analysis and ranges).

In one big study there were 1870 subjects diagnosed with T2, of these 168 had GAD antibodies. After 6 years, over 50% of those with antibodies (90) had needed to be put onto insulin but so did 147 of those without antibodies. The other 87 with antibodies hadn't needed to go onto insulin at this point. We don't know how many of these eventually needed insulin but they were following a progression more typical of T2.

Having said all that, your husband reminds me of those people far more of those that I have read about who eventually end up diagnosed as slow onset T1/LADA rather than T2.

I agree with Pauls suggestion of documenting everything and eating a healthy diet. Test as frequently as you can and make sure that you have some ketone strips. If blood glucose levels reach the high teens/twenties and there are ketones present, then it becomes an emergency.

I totally understand the problems about using service medical centres (been there for many years, until they decided to get rid of dependants to the local GPS, ) One consideration though is that they may be wary of introducing insulin since it might have big implications for his career.
.

 

[Ali H]

Aw Slummymummy it is a very trying time isn't it, I really feel for your husband as my post prandial readings are early teens too despite very small amounts of carbs. I am constantly tired and have various other high sugar related side effects too.

I realise you have to see the Forces GPs, but when you see a Consultant is that also an armed forces one? If not, and the referrals are just to a normal hospital, you are perfectly within your rights to ask your GP for a referral letter to one that practices privately and pay for the consultation, typically £150 - £200. Maybe you would be allowed to do that anyway? I have no knowledge of the Forces system but surely you are entitled to pay for whatever treatment you want elsewhere? At least you could then get the right tests done and find an answer?

Our Benenden cover is not fancy, flash private health insurance. It is a friendly society and mainly funds diagnosis when NHS lists are long or you meet brick walls at your GP's surgery. It is a flat £1.50 per week each! I had my prolapsed disc diagnosed via them after 4 years of being handed different pain meds by GPs, and also my torn knee meniscus which I have just had surgery on.

Jeeeez I hope one way or another you get things sorted for hubby, he can't go on like this that's for sure. PM me if you want any more info on Benenden, or indeed anybody else does. Nothing in it for me but I find them superb in situations like this.

Ali

 

[slummymummy]

Hi Paul,
Many thanks for taking the time to answer. We have gone down the route of the food diary and low GI as opposed to low carbing but to no avail with the GP practice......they simply either do not believe him or do not understand the condition.

Monitoring his condition has been totally unsatisfactory since Nov 2007 9when discharged by the specialist at the hospital) and we have been pretty much left to it ever since; just being fobbed off by the GP with further medication or increased doses without considering that their initial diagnosis may have been incorrect and without taking the necessary bloods to monitor. Following diagnosis, initially bloods were taken every 3 months and then went to annually after about 6 months (even when there were changes to his control and the meds needed) since then bloods monitoring and neuropathy testing etc has not even been offered annually. The only test that has been carried out annually is the retinopathy by the optician.

We have had no choice but to try and deal with this ourselves and I am fully aware that this has not been ideal! They just don't seem particularly bothered that his post prandial bloods are 13 or 14 - what they would be without low carbing is anyones guess and I would be concerned allowing them to reach that critical stage. I am at my witts end to be perfectly honest. Other half does not want me to go with him to the GP as he feels he should be in control of the situation and not need his wife to deal with the situation. I come from an allied healthcare background myself so am more clued up I suppose than most and am prepared to fight our corner to get him the correct treatment. I just get frustrated that they just don't seem to take on board that he is having to restrict his carbs so much; it is almost like we are not believed! His fasting levels are around 11 or 12 - surely that must tell them something????!!!!

 

[slummymummy]

Hi Phoenix,
Thank you for taking the time to read and respond. I have never used the forces med centre as a dependent preferring to use the NHS (as an NHS professional, I have been put off ever using the forces medical services for myself or our children!) Unfortunately, the other half does not appear to have the choice.

I appreciate what you are saying about insulin and the effect this would have on his career......it would most likely be over straight away or he would not be allowed to re-engage; however, I don't think that is a concern of the med centre.....they simply cannot see that he could be anything other than type 2 because of his age. Never mind the fact that there is no family history, he is slim, exercises regularly blah blah blah. They just do not routinely come in to contact with many diabetic patients and as such their clinical knowledge is not the same as a GP with a 'nomal aged population'

He is already downgraded due to the risk of hypos with Glicalizide (which he started in September) To be perfectly honest, although we would be thrown in to financial meltdown if they immediately pensioned him off, I would rather know that he is receiving the correct treatment to minimise the effects of high blood sugars. I think also mentally for him, it would be easier to come to terms with as he has never been able to come to terms with being type 2 as he has always been really active and eaten healthily....at least with type 1/1.5 he would know it was completley beyond his control and not anything he had bought on himself through lifestyle etc. He feels like he is judged as being responsible for his diabetes which is so unfair.

It doesn't seem to matter how much data we collect from monitoring bloods at home, food diaries etc.....the GP's take no notice! He is not restricted on test strips and can basically have as many as he wants - one good point of using the forces med centre! He is not due to go and see the specialist again until July but this appointment was made prior to the GAD test - perhaps they will ask to see him sooner althoughI am not holding my breath as they seemed to dismiss this in the phonecall on Thursday.

 

[slummymummy]

Hi Ali,
Thanks for taking the time to reply again. I have had a look at the health cover but it looks like we would have to wait 6 months before using it for a referral (only had a quick glance and will take a bit longer to look when I have more time) - having said that, they way we are going, 6 months is small fry after nearly 5 years of getting nowhere! You sound like you have gone through the mill somewhat with your health and have got your money's worth.

I have tried persuading OH to go privately to speed the process up for the last goodness knows how many months but he won't do it. I have no clue as to why; I can only assume that we seem to have a little success and he thinks it is finally about to be sorted (only to be sorely disappointed yet again!)

I am fighting a bit of a brick wall as he becomes very defensive when I show my shock and horror at the latest response from the GP etc. He does not routinely let me go with him to see the GP as I do become somewhat 'rotweiler' like and I suppose he feels rather like I am more in control than he is because of my medical background. All in all, its a rather tricky situation because I don't want him to feel like I am taking over and he has little control but equally, I am aware of the shortcomings of his GP practice.

 

[jopar]

slummymummy

As said, GAD testing isn't always indicative of T1,

If your hubby is diagnosed as T1, he will have two choices either Medical Discharge or finish his remaining service, in a non-active service capacity and he won't be able to renew...

If he goes for Medical discharge, this could effect his Forces pension entitlement, his disability will be assessed and scored, to keep full pension entitlements you need to be over 20% disabled, T1 diabetes is classed as being 19.5% disabled! So unless you've already earn't your pension entitlement, you lose it..

My husband was diagnosed as T1 while serving in the RAF...

Another consideration about his control...

If he's on a low carb diet doesn't necessary mean that he will gain good control and use very little medication etc...

Carbs are an easy source of energy to fuel the body, now if you drop the carbs, you have to make your energy levels up with protein and fats... Protein also brakes down into carbs, about 50% of it will end up as carb all be it does it slowly, but if you eat enough you impact on BG's... There's also the possibility that even though he's avoiding the main starchy carbs, he's eating a lot of the allowable carbs and with the combination of a amount of protein he's actually eating a lot more carbs than you think..

It's a common thing I often see with some who follow a low carb diet, by cutting out the main starchy carbs, eating the allowable carbs found in vegetables, salad and fruits... And due to portions sizes end up eating a lot more carbs than they actually think they are!

Fats,

Problem with fats it can create insulin resistant (I need a larger insulin ratio for high fats meals) so this could also be effecting his control and insulin residence..

As to medication..

LC doesn't always mean low medication or that a diabetic will only need metformin, as which type and how much will be a very individual things.. And with T2 diabetes there's a lot of different reasons to why the body isn't controlling the BG effectively, hence why so many different types of drugs to control it..

Sometimes what might look like to be LADA, may actually be T2 where the correct type of drug to counter-react the courses hasn't been found yet... it even can be diet alone or a combination of it all..

 

[slummymummy]

Hi Jopar,
Many thanks for your reply.

My resoning behind thinking he is not type 2 is because things will work for a short period of time and then stop working, he is not atypical of type 2; he is thin, active, no family history etc etc.

We are also fully aware of hidden carbs and portion sizes. He does not really eat fruit; on the odd occasion he does it is only for example half an apple - it is certainly not on a regular basis. The point I am trying to make is that why do things work for a little while and stop working with seemingly no reason? The only thing I can attribute this to is an incorrect diagnosis.

As far as the armed forces go, there is no set way with how they will deal with a serviceman and diabetes whilst in service.....a lot depends on your role and the stability of the condition and whether there are any other associated health conditions to take into consideration.

I appreciate that low carbing doesn't mean no medication and that diabetes may need to be controlled by a combination of diet, exercise and medication - they just all keep stopping working after a period of time. We are fully acceptant that this is a progressive condition and that over time things change.

 

[smidge]

Hi Slummymummy!

Sorry it's taken me a while to get back to you. I see you've had lots of other help. There are just a few points I would make.

LADA, as I'm sure you know, is a slow onset form of Type 1. It is an autoimmune condition. Basically, the GAD antibodies attack the pancreatic beta cells and kill them. Once they are all gone, you cannot produce insulin. In Type 1 this happens very quickly over days or weeks. In LADA it is a slow process and can take several years. Either way, the presence of GAD antibodies indicates an autoimmune condition. As Phoenix says, there are one or two other autoimmune conditions that also have GAD antibodies as markers. However, given that we know your partner is diabetic and has GAD antibodies, there is a very high chance that his GAD antibodies are indicating he is Type 1. Most consultants would take the presence of GAD antibodies to be confirmative of type 1 diabetes. The trouble with the GAD test is that sometimes it finds the antibodies and sometimes it doesn't - if your partner repeated the test, he might get a much higher level next time around - or none at all. That is why the absence of GAD antibodies does not rule out Type 1. The presence of them is usually taken to be a diagnosis.

So, let's assume your partner is Type 1. He is clearly not full Type 1 as he is producing enough insulin to stay alive without injecting (albeit only because he has been sensible and reduced carbs to an absolute minimum). Therefore he is probably LADA. The characteristics of LADA include very high post prandial spikes, but, in the early stages, fairly normal HbA1c and fasting BGs. This is because the basal insulin is pretty much intact at first, but the first phase insulin which is produced in response to the BG starting to rise, is missing. So, over a period of a few hours, the body can return to normal BGs and you will generally see no rise of BGs between meals. This differentiates it from Type 1 where the BG will rise between meals because there is no insulin to prevent it. However, as the condition progresses, the natural insulin production diminishes and the body is less and less able to bring itself back to normal BGs. By eating a very low-carb diet, your partner is controlling the spikes he would otherwise be getting but the diminishing levels of insulin he is able to produce is no longer enough even for this reduced carb intake. This will get worse as the remaining beta cells are destroyed by antibodies or simply burnt out by the constant stress of trying to produce enough insulin. There is no point using drugs such as Metformin because these just make the body more receptive to insulin (less insulin resistant); if you don't have enough insulin in the first place, it doesn't really matter how sensitive you are to it. There is also no point in using drugs like Gliclazide, because they work by stimulating the pancreas to rpoduce more insulin; if your pancreas can't produce more insulin because most of your beta cells have been destroyed, Gliclazide cannot work.

So is your partner simply an uncontrolled Type 2? Well, the risk factor profile for Type 2 is:

Overweight
Over 40 (white European) or over 25 (Afro-Caribbean/Asian)
History of Type 1 in family

Type 2 diabetes is a metabolic condition and usually comes with a couple of other metabolic conditions; high BP and high cholestorol. If your partner does not match the risk profile (above) of Type 2 and does not have associated metabolic conditions, his medical team should suspect Type 1. Together with a positive GAD test, that should be enough for a diagnosis.

The c-peptide test and fasting insulin test would just provide more evidence. It is obvious your partner is producing some insulin, so these tests would just confirm how much. If he has LADA, you would expect low levels of insulin in his blood with high levels of glucose. If it is uncontrolled Type 2, you would expect high levels of insulin with high levels of glucose.

From my personal experience, I was misdiagnosed Type 2 and spent a year controlling LADA on diet and exercise. Even by cutting my carb intake to 10g or less of carb per meal, I was spiking into the mid teens. If i dared to eat something like a small bowl of porridge, my BG went to the mid 20s. My weight plummeted. The first consultant I saw offered to undiagnose me because my HbA1c was in the 5s and my fasting BG was in the 4s. It was only a failed Glucose Tolerance Test that convinced them I really was diabetic - they were still sceptical. I had to threaten to sue my GPs to get another referral to a second specialist. He immediately put me on insulin, and a little later, the GAD test came back positive. He used that to confirm a Type 1 diagnosis and changed me to a bolus/basal insulin regime. I was 42 at the time.

I hope that helps a bit and that you get this sorted out soon.

Smidge

 

[Paul1976]

Thankyou Smidge! My Endo says I'm 99% Type 1 LADA too and I'm just waiting for C-pep and GDA just to confirm.
I was Diagnosed type 2 just on being 35 years old and my HBa1c being only 7.5%(It's now 14.1%) within 12 weeks.
The initial misdiagnosis of type 2 made me very depressed in the long run-I low carbed and took Met and Glic for my condition to just worsen whilst others who had Type 2 diagnosed at the same time as me were reporting levels in the 5's without medication and I just ended up jealous and angry thinking "We have the same T2-I work hard at my diet-They're getting 5's and 6's-why am I getting 20's and 30's??" It consumed me and the depression and jealousy and confusion built up to the point I wanted to lash out at anyone who was doing better than me and believe me,Jealousy is a horrible emotion and to be avoided at all costs and my message to anyone who is diagnosed type 2,has done their best to reduce carbs,BUT is seeing their condition deteriorate consistently,KEEP BANGING ON ABOUT IT at the Doctors,EVEN if it means seeing different Doctors at your practice until someone listens to you!! Misdiagnosis can and DOES happen! Thankyou Smidge for explaining all about Type 1.5 LADA and your experience with it-I empathise with you about those months trying to treat it with diet only!
Paul
(Sorry xyzzy for nicking your signature in my post-It just seemed a good way to describe what I was trying to say in my post-Sure hope it hasn't been copyrighted!!! :lol

 

[slummymummy]

Hi Smidge,
Thanks again for your reply - you're way of thinking is exactly like mine and I am convinced that he is LADA. It was only the specialist that mentioned type 1 but obviously we would have had a major crisis way before now. I suppose they use the term type 1 because most ley people have not heard of LADA - the GP didn't even know what it was when I have asked in the past! I just get so frustrated as I have queried LADA for the last 3.5-4 years and have just been repeatedly fobbed off. Likewise when he have provided food diaries and home monitoring to the GP, he has just been prescribed more meds and bloods have not been taken to monitor the effects or even provide a baseline. I am aware of the problems with metformin and gliclazide for LADA.

So I think we need to push for an earlier appointment than July to see the specialist again and request a c-peptide test. Why is it, that you feel that you are making a fuss about nothing and no-one can seem to see past the type 2 diagnosis?

Other half was 39 at dignosis, he is not overweight (in fact he is positively skinny with a bmi of 22), he does not have high bp (although the gp inisisted he went on Lisonopril as he is diabetic), his cholesterol is excellent, he is white, no family history of type 2 diabetes.

 

[slummymummy]

Hi Paul,
Sounds like you have an endocrinologist who is on to the case fancy swapping?

My husband has had the same problems trying to come to terms with the type 2 diagnosis; especially when he works soooo hard to control his blood sugars. We know other people who are stereotypical of type 2 and when he sees them eating whatever regardless and apparently managing good control, he becomes very frustrated.

At least with a diagnosis of LADA, I think he could get his head around that, because there is nothing that he could have done to prevent it and he wouldn't feel responsible for being unable to control his blood sugars. God, this is hard work!

 

[Sanober]

Hi there

sounds like you're going through hell, and your poor husband must feel so ill all the time with his sugar levels. I can't believe he's suffered 5 years so far.

So far my understanding is as follows:
His BMI was pretty in range but now much lower
Low carbing yet still gets post meal highs of 13+ and fasting 11+
He was fit and now not as physically active (due to the fatigue etc I bet - is he getting muscle cramps at all?)
The pills don't work - Smidge beautfully explained why
The anti-GAD was positive for antibodies (approx 75% of T1 / T1.5 show antibodies the rest can still have a form of T1 even if there are no antibodies)
Cholestrol fine, blood pressure fine
I was similar to all of the above and got diagnosed initially as T2 last year at age 34.
I'm also at lower end of B12 range but taking supplements.

Both Anti-GAD and c-pep need to be done to test for T1 / T1.5. I think for simplicity and let's be honest GPs deal better with simplicity. We'll call it T1 for now.

C-pep will reveal how much insulin he's making. They did a fasting one with me.
Low insulin and high sugars = T1 (because T1 is autoimmune, so the insulin making cells in the Pancreas are attacked by the immune system, so insulin production becomes less)
High insulin and high sugars = T2 (because T2 is fundamentally that the insulin is being resisted i.e not used properly so the body makes more and more to deal with the high sugar levels)

Some people can have both types (but there are many other types out there too...).

Ketostix are a great idea as suggested by Viv. It will be interesting as the medics seem to panic when they you mention Ketones are present.
Also re-inforce the point that husband is starving himself (I did this and it helped me to get an Anti-GAD test done by this point).

I was told T2 for several months. I was physicaly fit and active and became so tired and depressed and couldn't focus on my work.
I had some horrible extra symptoms on top of the normal ones but the doctors went off down the genetic route and did fancy tests (interestingly both my parents are T2 and now I'm the only T1 in my entire vast family - figure that one out!)
I was literally starving myself towards the end as I was low carbing and I was still getting readings in the teens.
They put me on Glic and it didn't work (they wouldn't put me on Metaformin because I was told I was slim).

As this great forum taught me and particulary the "LADA ladies" as I call them - you need the right tests, to get the right diagnosis in order to get the right treatment.

Mericfully it took me a year to get diagnosed and on insulin, although it was a miserable time I must say at least it wasn't 5 years, I don't think I could have coped.

Just one more test, the c-peptide. So frustrating. Good luck.