Replies to This Discussion

Permalink Reply by Wiseguy on August 26, 2010 at 4:38pm

The test is a blood test - by your endo. I am not sure a GP can initiate it One test is a GADD antibody blood test. All type 1s are lacking in this antibody - treatment would be different in that tablets would be stopped and venture onto insulin. (no tablets, rather add in rapid insulin for carbs) I will cut and paste a post made by a dr in the LADA section of Tu D and it covers all the tests.

Type 2 is progressive (hence so is treatment diet, exercise, tablets, insulin) so eventually you end up like a type 1 anyway (if you look after yourself -being aware of your levels and doing anything you have to to get them in control - whether that means insulin - so be it!) Many people fear insulin and really living life a long time will you would think would combat that fear, but it doesnt in many) Average length of time on tablets is 10yrs before progressing to insulin.
)You also do get very sick once your pancreas gets to its last 10% of producing beta cells (insulin cells) and type 1 kicks in but your lantus could masking this. I will find the post I was talking about sometime today and post for you. keep your head up.

Permalink Reply by Karen Leigh on August 26, 2010 at 4:58pm

Thank you. I appreciate it. Thing is, I never "progressed". I went straight from non diabetic to full blown - needing insulin from the start as meds alone did not work. I fought it for 2 years, but eventually went onto Lantus as I was so sick of being sick. I still think it hasn't been enough despite some improvement. I don't have control and foods are so restricted that there is nothing left that I like. I can't live on that sort of restriction. Just protein, veg and salads. Dairy, grains, fruits - all make me go too high. I had cereal for breakfast this morning as I was so sick of eggs and baked beans, and of course am paying the price now.

I've been afraid to approach my doctors about this as they haven't been "user friendly" to date. A recent heart attack (my second) has taken priority over the diabetes but I can't help feeling if they would help me get the D under control, my heart will be less threatened.

Permalink Reply by Susi (Ladalife) on August 28, 2010 at 8:22am

Karen, GAD Antibody testing is the usual. You would have a POSITIVE (not lack of) antibodies to be diagnosed with LADA. Not all Type 1s have a positive GAD - other antibodies also come into play with rapid onset Type 1.

I have a history similar to yours. I'm LADA - only found when I was in my 50s - which is well known here in Australia. So fight for the testing or change your docs. The treatment is different and mostly aimed at preserving beta cells, not making your cells work overtime. If you do have LADA, then beta cell preservation is the key for as long as possible (according to a recent study I read).

Have you ever had a c-peptide done?

With insulin, you should be able to eat whatever you want and adjust insulin doses but you're only on a basal dose with Lantus not boluses, which could be the problem. Even if you're a Type 2, you could have beta-cell burnout which means that Diamicron which I think makes you produce more insulin, won't be working. It also won't be working if you have no beta cells left (in LADA). Metformin works to make your fat cells more insulin sensitive, but you have to be producing that insulin in the first place. Your docs should be testing you for all possibilities if the meds aren't working,

Give me an idea of what you term as "high".

Message me if you want to talk about this more privately. I'm happy to help and to suggest things to say to your docs to make them do the testing.

Permalink Reply by Karen Leigh on August 28, 2010 at 2:28pm

Hi Susi,

By 'high', I mean still up around 17 before the evening meal. Morning readings are fine, usually from 4 - 8. Going into the 20's during the day is the "norm", but I do feel terrible when it gets too high. I used to get into the 30 mark, but a better diet has stopped that. While in hospital, they couldn't understand my readings on their diabetes friendly diet, and they kept cutting foods but not replacing them until I was having "meals" like a small piece of chicken and a small floweret of broccoli. I was forever hungry. They withdrew milk from my tea but still gave me cereal and milk for breakfast. Cereal is like poison to my system.

Would love to hear suggestions on how to approach my doctor. The latest is fairly typical of them. You ask about something you've heard and they get defensive/aggressive. I am hoping my new doctor and I will settle into a better relationship. The problem is they are on a time limit, and I have so much ground to cover, but they will only deal with one subject at a session. They are not bad doctors, just too overworked. If you have any suggestion, here, they might help others in my position too.

Thank you.

Permalink Reply by Susi (Ladalife) on August 28, 2010 at 9:07pm

Karen, firstly, yeah your numbers are WAY too high. Being between 4 and 7 before a meal is usually the target and very achievable if you're on the right medication. I freak if I'm 9! Hanging around those numbers you mentioned not only makes you feel like crap, but does so much long-term damage.

I'll apologise here because this is going to be long - but it's the short version!

Here's what I did.

I wanted to go on an insulin pump but wouldn't have been able to afford the pump supplies which are only subsidised in Australia for Type 1s. So I kept insisting that I wanted the testing. My endo told me it was impossible I was Type 1. So be it, but I wasn't about to give up. Despite the fact that he is a wonderful endo, I present a little overweight, so he quite rightly thought - oh, overweight, must be Type 2. This is the profile that is taught and generally accepted. An endo will test if you thin, but will assume something different when you're just that bit overweight.

So, I kept asking for the antibody testing saying that I could not live with myself wanting a pump and not knowing for sure I couldn't get one without the subsidy. So my approach was to ask if Type 1 could be ruled out for sure. I didn't say I suspected I had it. I went the opposite way. Also if you or anyone in your family has any other kind of autoimmune disease (which I have) the argument gets even more persuasive.

I went on private health insurance and waited the year to qualify, and then got my pump, I'm a happy camper. But in the meantime, I was on the right regime. No Type 2 drugs and a proper insulin regime of basals (Levemir) and boluses for meals (Novorapid).

The other way to start is with the people at the hospital - your dietician and your DE. Bring it up with them. Tell them you know someone (me) who was overweight and still tested positive for LADA.

If nothing else, you need to be on whatever medication works to bring your levels down. If the Lantus isn't holding you and the other meds are doing zip, then it's time for a change. The other meds will do zip if you're LADA. If you are overweight, then the Metformin will be helping, but not enough. The Diamicron will be doing nothing much if your c-peptide (the amount of insulin you produce naturally) is falling or zero.

There are 2 tests done - the GAD antibody and the c-peptide. There are also other antibody tests but if you were a straight Type 1, you'd probably have gone into DKA by now because the onset of producing insulin to not producing any is very fast.

One of the reasons you may be going high in the evening is that Lantus doesn't always last all day. Back when I was on injections, I was taking Lantus twice a day and then Levemir twice a day. I think Levemir is only approved for T1s here. Neither held me the full 24 hours. The way I knew is that I started taking Lantus in the morning, so it was the opposite time of the day I went high.

By the way, even with the proper insulin (and an insulin pump) cereal is the deal breaker for me. I can do chocolate better than cereal! LOL Go figure!

I have recently found an Uncle Tobys 'weightwise' oatmeal that I can actually eat. It has 19 grams of Carbs and I can only just manage that for breakfast. I rarely eat it. I tend to do under 100 carb a day, often around 60-80 grams a day, which is way more manageable. One of the problems is that some of the dietitians in Australia are still giving diets that are too high in carbs, when people aren't managing their blood glucose well.

Yes, you're right - time is always the problem. Being 17 before a meal is totally unacceptable, and someone should be paying very close attention to that and changing your medications and diet ASAP. Sounds like you're just another number and who cares because you've got T2 and "you caused it". Wrong, wrong and wrong again! Someone in your medical team should be freaking out at those numbers and doing all they can to find out why.

I struggled with this too - high numbers and following everything they said... for a while. Then I took charge and did my own thing (low-carb) and everything was much better, until my endo insisted I went to only insulin. And then I got the testing I wanted. My endo apologised to me when the results were positive! I'm glad I insisted! I even offered to pay for it myself! That convinced him! (I didn't pay, by the way.)

Learn all you can about diabetes. The two books that are bibles are "Think like a pancreas" for general info, and "Pumping Insulin" if you're on a pump. Your library should have both or should be able to get them, if you don't want to buy them.

I don't know you or your medical history but if you learn, learn, learn, you can use information to your advantage and make persuasive arguments to achieve your goals.

In the meantime, ask if you can reduce your carb intake (I never ask this stuff, I just do it myself) and maybe do some exercise before dinner until your meds can be properly adjusted/changed and you get the meds and testing you want.

Happy to answer more questions if you need.

Permalink Reply by Karen Leigh on August 29, 2010 at 1:40pm

Susi, thank you for taking the time to write this. I have taken notes, and plan to put together a speel for the doctor. I can change doctors until I get one who will listen, and that is the bottom line, getting someone to listen. My DE is not diabetic herself but she doesn't listen, knows it all and my only job is to agree and conform. Dietician from the hospital is not experienced, and doesn't go into a diabetic plan at all. If its not in her book, it doesn't exist.

I have reduced my carb intake myself, as it is the only way I can stop feeling so awful all the time. Fats are out as they make my stomach burn cruelly. I don't eat red meats because my body doesnt' digest them. Result is I'm always hungry. That's another story though. Like you, I can do chocolate better than cereals.

I've been on Lantus twice daily since the doses got so high. The DE feels I can just keep taking more and that 120 units isn't a problem (to her). I'm up to 75 now and wary about going higher. I heard Levemir was better than Lantus but it isn't available to Type 2's. What is your opinion of Levemir vs Lantus

Permalink Reply by Susi (Ladalife) on August 29, 2010 at 2:02pm

Hi Karen,

I much preferred Levemir and I was lucky I got it when I did. My GP just ordered it for me, not knowing that it was only for T2s! Still have the bruises though - more than a year later. Levemir tended to bruise me whereas Lantus didn't.

I'm sorry you're going through this! It should be much easier to get a proper diagnosis and appropriate treatment!

Check out this list to see diabetes health professionals who've been recommended by people with diabetes.

Click on which health professional you want, and which state and you'll see the recommendations. Looks like there's one good endo in Brisbane, at least!

Do you ever get down to Byron Bay? Alternatively, message me and I'll call you if you need to discuss this further. (Don't put your phone number in this public forum!)

Permalink Reply by Karen Leigh on August 29, 2010 at 2:33pm

Oh, I have bruised from the Lantus. I think because the dose is so high, and I have an unsteady hand.

After 3 years, I still have not been referred to an Endo, not even during either of my hospital stays. This will be one of the questions on my list for the new doctor. I really am under the impression that type 2's do not warrant any real help around here.

Not having a car, I don't really get around much at all, let alone out of state. I get help with shopping and such, but have been grounded severely since the last heart attack as I am dependent on public transport. Not that I have the energy to go out much anyway, but I am sure that won't last long. I loved walking and would walk almost every day, but that is not possible at the moment. But I'm getting stronger each week, so all is going well.

Permalink Reply by Susi (Ladalife) on August 29, 2010 at 9:40pm

I seriously don't believe it! Three years and no endo? That's criminal!

I "was" Type 2 for many years before the LADA dx and yes, over the years, it was a bit more slack in terms of endo, but I still got referred pormptly in the beginning. In fact, soon as they suspected when I was 25, I was shipped off to a dietitian and an endo within 2 weeks. He was an absolute darling and spent ages explaining things.

I remember what he kept saying - "You're 25 years old! You shouldn't have this. I don't understand it!" Yes, I was in shock too!

Guess things have changed a lot. And I hate to say it, the older you are, the less they seem to care. Pity.

Oh well, I have a car, but I don't drive as far as Brizzie. Sorry!

Permalink Reply by Karen Leigh on August 30, 2010 at 3:15am

Hey, wouldn't expect you to drive to Briz. But this is what the internet is for.

Yes, I'm in my sixties and must admit the cardiologists have a better attitude (but your only in your 60's). Made an appointment to see my new GP next week. Hope to have a bit of info for her. Have found one interesting page on the web, and will just browse around to see if there is anything better. This is the link to the page. Hope it works.

http://www.diabetestrials.org/LADAarticle.html

Jaw is not painful at all tonight. I expected worse, so this is a pleasant surprise.

Permalink Reply by Susi (Ladalife) on August 30, 2010 at 5:49am

It's a good article, as long as you can identify with it, with your history. Al the best with your new GP. I sure hope you get the testing, but more importantly the treatment you need!

Permalink Reply by Susi (Ladalife) on August 30, 2010 at 8:52am

Karen...
So now I've done a blog post about the issue of LADA testing: LADA Testing Criteria Should Be Broadened. There are some footnotes that may lead to some of that info you are web-searching for.

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