Does it matter which type your treated for ?

[kimbo]

I was diagnosed as t2 but suspect I could be slow onset t1.The specialist nurse agrees this is possible.She explained the main concern was getting good control of my bg so after 18 months on oral meds I am now on insulin.
Should I be concerned that I do not know which type I am ? where its going ?
Do t2s get given the same insulins, advice on manageing with diet ect as t1s ??

levermir + novorapid + metformin

[JediSkipdogg]

Have you ever had a C-Peptice of GAD Antibody test done? Neither are 100% positive, but they help show which direction you are going in your type.

As for does it matter? Personally, no, just whatever works. I know insurance companies and doctors like to know what type one is. But this day and age, it doesn't matter. There are type 2s on insulin that test as much as a type 1 does. I don't know of any type 1s on oral meds, but there could be one out there. I think it's just up to what gets your numbers in control.

[Cyborg]

If they find out you are type 1 rather than type 2, I suspect they may reduce or eliminate the metformiin. When my endo discovered I was really type 1, he cut mine. I even asked him about it since I figured my insulin resistance didn't just disappear. He said I could go back onto it later after adjusting to MDI, but I never have...

[Funnygrl]

Yes, and no. Treatment doesn't matter a ton as long as control is good. But there are a few exceptions.

If you have type 1 and are treated with oral meds alone, then your honeymoon will likely be shortened as a result of the added stress on beta cells.

If you are type 1 and treated with oral meds, you may have extra side effects from a medication you don't need.

If you are type 2 and not given oral meds with whatever insulin you take, the effect may be added resistance and I read somewhere that it can actually increase your risk of heart disase.

But I think these exceptions apply mostly in clear cut cases. In the grey areas glucose control is what matters most.

[kimbo]

Once I have had more experience with the insulin and have more acceptable/stable hba1c results I am going to come off metformin and see how it goes.The metformin is my concern,they dont test for types in the uk.I cannot see the point of being treat as t2 and taking metformin for years knowing if I were 1.5 I might not need it.

[lilituc]

It matters to the insurance companies here (especially if you want to get a pump), and it might also matter if you need to have emergency treatment. IT matters to some doctors (whether they treat you or ignore your concerns, sadly). Other than that, probably not.

[Mister Q]

Have you ever had a C-Peptice of GAD Antibody test done? Neither are 100% positive, but they help show which direction you are going in your type.


I asked my Doc for a c-peptide when my type was under question, he informed me that they don't do them in the area I live in!!!

[Geoff]

Hi Kimbo, I have been down some of the same road as you. I was diagnosed as type 1, but because of my age at diagnosis’s , 49, I do not fit into the NHS’s nice little box of being a classic type 1. I was put on insulin from day one, and have been able to achieve very good control . I have asked many times my GP, Diabetes specialist, and every one who would listen for a C-Peptide test and have been fobbed off each time that it is not important to have this test?

As goes the type of advice on insulin, most type 2’s in the UK are put on Lantus long acting insulin, usually as a single dose. After a period of several months to a year, they find out that it is not working very well and put you on MDI (Multi Dose injection) Rapid insulin with meals, base insulin Lantus one time per day or as a split dose. This is now the preferred method with all newly diagnosed type 1’s in the UK. The most important thing with this regerman is that you learn to count carbs, and adjust your insulin to suite. Try to get yourself on a DAFNE course (Dose Adjustment for Normal Eating) ask your diabetes specialist about this not your GP, as most have no idea what it is.

[Funnygrl]

I asked my Doc for a c-peptide when my type was under question, he informed me that they don't do them in the area I live in!!!
It's a really common test here. I think I have had a c-peptide at least 5 times. That's absurd.

[Mister Q]

That's absurd.

When you take away the swear words that is the essence of what I said!!

Welcome to the National Health Service lottery, this operates within the UK and is based on your post(zip) code. Where you live can literally be a matter of life or death, hardley a week goes by without some story in the news over a patient taking a Health Authority to court as they are refused treatment others get elsewhere in the country.

OK for me it was no real biggie, but when people are refused life saving treatments then that really is s**t.

[am1977]

Frankly, no, like other people have said... I don't think it matters so much with what your treatment is as long as you can control your disease, ultimately. Almost every type of treatment has it's benefits and drawbacks- it's really a matter of finding the thing that works best for you.


Good luck

[Lex4153]

With me, it did matter. I was misdiagnosed as a T1 and taking insulin with no oral meds for 10 years. This didn't work very well!! Now that I'm correctly diagnosed as a T2, my blood sugars are stable and controllable for the first time on oral meds alone.

Does it matter as long as your blood sugars are good? Not really. But for me it did because I wasn't able to get the right treatment. Hopefully, what happened to me is pretty rare though.

[kimbo]

Geoff,what symptoms did you present to be diagnosed t1? I read your post " the best I have felt in ten years ". Just curious.

Thanks

[Funnygrl]

With me, it did matter. I was misdiagnosed as a T1 and taking insulin with no oral meds for 10 years. This didn't work very well!! Now that I'm correctly diagnosed as a T2, my blood sugars are stable and controllable for the first time on oral meds alone.

Does it matter as long as your blood sugars are good? Not really. But for me it did because I wasn't able to get the right treatment. Hopefully, what happened to me is pretty rare though.
Well, I think what people are saying is it doesn't matter, provided the treatment works. For you, it didn't work.

[Geoff]

Hi Kimbo, I had felt listless for about a year before I was diagnosed, always tired, used to get a lot of colds that lasted for a week or two. Then about six months before I was diagnosed I started to lose a lot of weight, over this time I lost some 15kg. Other symptoms were very dry skin, mostly on The backs of my hands, then I started to urinate a lot, getting up two times in the night, my eyesight started to get bad, and the final thing that made me visit the doctor was I noticed black spots in my urine which turned out to be protein. The rest is history has they say!!

[kimbo]

Geoff,Very similar to me.I am 49 ,went down hill over a couple of years,very tired and weepy,eye sight changed,constant cold sores,often,thirsty,hungry,cramps,fasting bg 16 and to date lost about one quarter of my original weight.
Things are looking up now I have started on insulin.

[Geoff]

Hi Kimbo, good to here that you are moving in the right direction. What insulin are you on? And how many units are you using to bring your bs under control? What is your weight in kg’s, as this will influence how sensitive your body is to the insulin.

I have been able to reduce my units of insulin from a total of 46per/day ( lantus 22/Novarapid 24/day) down to at present (12units lantus/day, Novarapid average of 10units/day) I am at present 79kg.

You will probably find that your weight will increase over the next 5-6months if you are using lantus, as it seams to have an appetite stimulating effect on your body. This happened to me until I was able to reduce the number of units I required by improving my sensitivity mainly by exercise, then my weight started to fall again.

[kimbo]

I weigh 52 kilo,take 6 units novorapid with 1000 mg metformin before breakfast and evening meal and 10 units of levemir before bedtime.The breakfast dose is a little high but stick with it so I can have a good mid morning snack to help me gain weight,if I am going out after breakfast I only take 4 units and I am fine with that.
Just the other day I noticed I have put on about half a kilo ,just hope it keeps going up for a while.

[Geoff]

Hi again Kimbo, That’s an interesting regimen that you are on, am I right in understanding that you are taking 2000mg of metformin per day with you insulin? This sounds an awful lot. Are you still having problems getting your bg into the stable range 4-7mmol/lt? At high rates like this it will be hard for you to try to gain some weight, as metformin is designed to reduce weight gain by decreasing liver glucose production and increasing the way glucose is used around the body. This is why it is the drug of choice for type 2 diabetics who are over weight as it does not promote weight gain.

What is your bg reading first thing in the morning? Do you test your bg every time before you are going to eat and take your novarapid, as you need at least 30grms of carbs for it to work for it’s av 4hr duration.

[sofaraway]

For me it was important that I got the correct diagnosis. i would have probably been diagnosed with type 1, as i was 15 and slim when i presented. having the correct diagnosis meant i was diet controlled for several years, then oral meds for a couple more years, until it had progressed to when i now need insulin.

also I think it's important knowing the chances of passing this onto my children. if i was a type 1 or 2 the chances would be alot less than they are. i'm not sure at the moment how, (if at all) this will affect my decison making when thinking about children, but i think it's good to have the information

[kimbo]

Yes 2000 metformin a day.My wake up bg was 6 when I first started on insilin but the last few days it has been 9-10 ( this was my lowest am bg for a few months before insulin ).I was told to expect bg to go back up once the gliclazide and avandia ? got out of my system.
I am testing before each meal as I have to give my daily bgs to the diabetic nurse then she will advise me if I should change the dosage.I assume this will stop once I have seen the dietician who will teach me how to carb count.
My plan is when I know what I am doing with insulin and carbs and have a more stable bg is to see how my numbers go without the metformin.I will speak to her about the weight loss connection and see if theres an alternative.
You never know,I might finally get somewhere soon. I was diagnosed 19 months ago.

[kimbo]

Hi sofaraway,
How were you correctly diagnosed in the uk ???

I wonder how many of us are not sure what type we are ?

[sofaraway]

becasue my mum (also MODY) had been correctly diagnosed, so it followed that i would get the genetic testing to check what type i was. I was pretty lucky.

at my clinic there is a research doctor, who does genetic clinics, and is looking to identify MODY's in the clinic that have been incorrectly diagnosed.

my dietician did tell me that all the newly diagnosed people that were not completley obviously T1 or T2, have antibody tests now. this is probably just my area though and not a national thing.

[kimbo]

Mody was also suggested to me.The test must be a local thing,I asked about these test and was told they do not do them.

[Geoff]

Hi Kimbo, Your wake up bg (fasting test) is showing 9-10mmol/lt because you need to start fine tune your Levemir dose to bring you down to the 5.5-6.0mmol/lt range. You can safely try this if you feel confident enough to adjust your levemir yourself. By my experience I think you will need to increase your dose from 10units to 13 or 14units. You can safely try 1unit at a time, every three days, and see how much each time it reduces your bg. You will have to do this some time in the future by yourself if you want good control as treating diabetes here in the UK is by self- empowerment through structured training. By reduceing your dose by 1unit at a time there should be very little risk of going hypo!

Here is a link to a very good web site about adjusting Lantus/Levemir your self. Lantus notes (http://medweb.bham.ac.uk/easdec/prevention/lantusnotes.htm)

[kimbo]

Thanks geoff, Its a great link.I will up it 2 units tonight .I dare not do more than that at one time.

[Emm]

Hi Kimbo

Not disagreeing with the idea - just think maybe you should go with ONE unit change at a time? Better safe than sorry and all that :D No one knows your body like you do, so go for it if you think 2 is ok!

Good luck getting it all sorted!

[Geoff]

Kimbo, let us know how increasing the dose is working.

[kimbo]

I increased by 2 units last night and woke at 6.5.
I had 6 novolog before breakfast,after a couple of hours I am normally low but today I was 16.5 ( same breakfast ) maybe its because I started the cartridge 4 weeks ago ???.I have changed it ready for my next meal.
I also test between some meals at the moment, it helps me learn what effects me.

Thanks.

[Geoff]

Hi Kimbo, That’s a good start. Do not change the levemir yet keep using the same number of units for the next two days, this allows the levemir to adjust properly. Until you get the basel dose right it is hard to correct the bolas (novarapid)doses.

The next thing you need to try, is to find your insulin/carbs ratio. This can change throughout the day it will be trial and error until then. An average carb ratio would be 1:15, that is for every 15grms of carbohydrate, you use 1 unit of insulin to cover it. E.G. breakfast, 50grms weight of Jordens porridge oats 26grms of carb,add 25grms weight sultanas=17.4grms carb, add 200ml milk =+- 10grams carb total=+-100grms carb. At 1:15 you would need 6 mayby 7 units of NovaRapid to cover it. Get the idea?

[kimbo]

Geoff,thanks for your help.I understand what you mean,I will study the carb values on lables now and see if I can get a good understanding of portions ect and get a head start before I see the dietician next tues.

I think I will need a calculator before each meal :laugh:

[kimbo]

I saw the dietician,she told me 1 unit to 10grams of carbs.Sometimes I am ok with that and sometimes I think its too much but that could be my inexperience of carb counting.I am playing around with the insulin at the moment and keeping a food diary so eventually I may work it out for myself.

[lottadata]

Knowing what kind you have can make a HUGE difference in figuring out the right insulin dose to use.

My doctor assumed I was type 2 because I was diagnosed in my late 40s and had put on a bit of weight at the time. (It all came off with a low carb diet.)

When my family doctor decided I should start Lantus because my fasting bg was rising despite metformin and a very low carb diet, he prescribed the usual starting dose for a Type 2: 10 units.

Because I've had bad experiences with overdoses of drugs at normal levels, I started much lower, which was a good thing, because at 6 units I was hypoing. I never got up to 10 which probably would have put me in the hospital.

If you have MODY-1 or MODY-3 (which we suspect I have), another important point is this: The defect here is mainly in the ability to produce insulin in response to incoming glucose.

I do much better injecting fast acting insulin to cover meals than I do with any basal insulin. When I keep my meal time blood sugars normal (85 by 2 or 3 hours) my fasting blood sugar will be normal too.

My usual dose of R or Novolog (I use both depending on circumstances) is 2-3 units which works out to an insulin/carb ratio of 1:15.

I still take Metformin, btw. It keeps me from gaining weight and it makes it much, much easier to get to completely normal numbers without risk of hypo. It reduces my need for insulin by about 1/3. That's only a unit or so, but the insulin works so much better with the metformin, as far as lowering the blood sugar swiftly that I wouldn't be without it.

[Funnygrl]

Type 1s are often started at 10 units, or even more as well of Lantus. Less than 6 units is an insanely low dose for anyone but a small child.

[lottadata]

That is the point. My very strong response to very small doses of insulin are characteristic of several of the MODYs. That's why it is so important to know the diagnosis.

The other characteristic of several kinds of MODYs (MODY-1 and MODY-3), which I was told by someone at the Exeter UK clinic that has published the most research about them, is a very strong response to tiny doses of a drug like Amaryl. I took 1/8 of a 1 mg amaryl pill, ate 1/2 of a large bakery scone (50 grams of carb) and promptly dropped to the 70s within an hour after eating. I spent the rest of the day chugging carbs to stay in the 80s!

I've heard from other people with MODY who have had similar experiences. They've also had a heckuva time getting support from doctors who think they are nuts or imagining that they have diabetes because of the benign fasting blood sugars and 6% a1cs.

In my case, to defuse the idea that my diabetes was all in my head, I asked my endocrinologist to run a non-fasting test. When I came back to see her after she'd seen the test result she said, "What on earth did you eat????" I told her I'd only eaten one small whole wheat muffin from the health food store cafe. (It's a small town and she eats there, too, so she knew exactly what I was referring too.). After she saw the diabetic level blood sugar reported on that test, (despite a full dose of Metformin) she became very helpful to me, though she admitted she wasn't at all sure how to prescribe insulin because she'd never had a patient with this response.

She was even more supportive when my A1c started to drop after 2+ years of refusing to budge no matter how much Metformin or Avandia was thrown at it.

[sofaraway]

If you have MODY-1 or MODY-3 (which we suspect I have), another important point is this: The defect here is mainly in the ability to produce insulin in response to incoming glucose.







The other characteristic of several kinds of MODYs (MODY-1 and MODY-3), which I was told by someone at the Exeter UK clinic that has published the most research about them, is a very strong response to tiny doses of a drug like Amaryl.

I've heard from other people with MODY who have had similar experiences. They've also had a heckuva time getting support from doctors who think they are nuts or imagining that they have diabetes because of the benign fasting blood sugars and 6% a1cs.


i found this, for several years my A1c was below 7% and my fasting blood glucose was non-diabetic range, as soon as i ate my blood sugar would rise. i had a GTT to confirm the diagnosis.

i started on gliclazide 20mg (1/4 tablet) and had awful hypo's (2-3 days hospitalized), when i took 2 whole tablets.

now i've ended up on insulin as it has been progressive and i produce little of ym own insulin anymore.

[Kimber]

Funnygrl,
I am currently on 6 units lantus and have had too many hypos at 50 BG. I am wanting to go to 5 units or even 4 and will ask at my upcoming appt. I am 44,
"double diabetes -or- type 1.5" depending on who you ask, 1000 mgs metformin, actos, synthroid, daily. I am hoping this "insanely low dose" will stop my low bg events.
Kimber

[Funnygrl]

Funnygrl,
I am currently on 6 units lantus and have had too many hypos at 50 BG. I am wanting to go to 5 units or even 4 and will ask at my upcoming appt. I am 44,
"double diabetes -or- type 1.5" depending on who you ask, 1000 mgs metformin, actos, synthroid, daily. I am hoping this "insanely low dose" will stop my low bg events.
Kimber
You don't have double diabetes. Type 1.5, probably. Double diabetes- no. Double diabetes is when a person has marked insulin resistance, and an obvious autoimmune attack on the pancreas.

[Kimber]

Funnygirl,
My endo tells me test results show GADantibodies, (autoimmune disoder) and insulin resistence. Am on both metformin and Actos for the insulin resistence. Also have antibodies against my thyroid (Hashimotos disease). Am on Synthroid for that. Woke up again today with BG of 60. I suppose better low than high but still, I would like to find a happy medium (like us all.)
Kimber

[BlueSky]

... My endo tells me test results show ... insulin resistence. ...
What test did he do to show this? The fact that such small amounts of insulin are causing hypos suggests that you are very insulin sensitive.

[Funnygrl]

What test did he do to show this? The fact that such small amounts of insulin are causing hypos suggests that you are very insulin sensitive.
Well, she's on Actos and Metformin too, plus Lantus, I can see her not needing much.

[Kimber]

Funnygirl,
My endo said the hope with the orals was to not need much insulin. We were hoping to protect what is left of my pancreas for as long as possible. We have already scaled it back once from 8 to 6. Yesterday was confusing, started the day out at 60, then went to 160 (before dinner!) so ate no carbs for dinner and promptly went to 58. Something needs to stabelize, perhaps I need less orals? I have read that type 1's should not take actose, I am thinking I need to move up my next appt and ask because I have too many lows and I drive a lot. Makes me nervous. Have just switched to the lantus pen and loving it. So much easier to use than the syringes for me. By the way, thanks for the conversation. I love to hear other's opinions.
Kimber