I need help advice from my Type 1.5 friends - Anyone been told you're Type 1.5 and put on orals?

Type 1 and LADA
1

Hi guys,

So my long, long, long awaited appointment with my new endocrinologist took place today and it was very bizarre. I was there to settle the debate as to what type I am. He believes I’m Type 1 for many reasons. I did take the antibody GAD blood test on Dec. 21. But get this – I’m in Calgary and the sample had to be sent to Edmonton and then to Montreal and apparently they get around to doing when they feel like it, which could take up to three months.

So he gave me a choice. Wait until the test results come back, and then if it’s postive we know that I am. If it’s negative, it doesn’t necessarily mean that I’m not Type 1, so it would be inconclusive basically. Alternately I could stop taking my insulin completely for a week. If my sugars only rise a little bit, then I’m Type 2. If my sugars spike drastically and I have ketones, then he will put me on a better insulin. If my sugars spike drastically and I don’t have ketones, he will still diagnose me as a Type 1 but put me on oral medications.

Now I’m really confused! Isn’t the whole point of determining your Type to decide if you need insulin or oral medications? He said if I don’t have ketones it means my pancreas is working to some degree and he would therefore put me on medications that would stimulate the remaining cells to “pick up the slack.” I asked him if this would exhaust the remaining cells, he said no.

Has anyone else been diagnosed with Type 1.5 before their honeymoon ended? Were you given the same advice? What exactly makes you have ketones and how does this relate to what type you are and how well your pancreas functions? Any input is greatly appreciated.

2

My 15 yr. old was ast first a 1.5 before they got back all the results. He was put on Metformin and insulin. Just recently they got the tests back and said he is a type 1 and took him off the Metformin. His numbers keep shooting up and he is requiring more and more insulin. They said it is better to treat with one med. instead of two and that met. is hard on the liver. He was spilling keytones on diagonis…and some now as we are trying to get him back to a good range. They tested his Gad and the other test for aniboties…He had really high of both and that is why they determined he is now a 1. I wish they had never started him on Metfomin because now he is getting upset at his numbers when he was soooo much more controlled with the metformin.

3

Well, that sounds truly bizarre. There must be a wicked case of bizzare going around. But in the end, at least he gave you a choice and it would seem to be your decision. So lets go over the alternatives:

  1. Stay on insulin
  2. Drop the insulin, see what happens

Ok, so lets play out the two worst case scenaries. Kelly is type 1.5 and Kelly is type 2.

Kelly is type 2:

  1. Stay on insulin - Result, continued good blood sugar control, some risk of hypo like every insulin dependent diabetic
  2. Stop the insulin - Result, blood sugars rise a bit,but not generally unsafe in the short term.

Kelly is really type 1.5

  1. Stay on insulin - Result, continued good blood sugar control, some risk of hypo like every insulin dependent diabetic
  2. Stop the insulin - Result (worse case remember), loss of blood sugars control DKA and unplanned trip to ER

I don’t think this is even a question worth pondering. As long as you feel compfortable with the insulin and don’t feel you are having any serious risk of hypos, then just stay the course. Remember, type 1.5 can often result in honeymoons. While just stopping insulin as a 1.5 might result in a small rise if you are in a honeymoon, but it can give you a false sense of security. There is evidence that early insulin therapy really helps preserve the beta cells.

And as to your last questions, lots of people have been diagnosed as type 1.5 before the end of their honeymoon, all it takes is a positive GAD or autoantibody test. Personally, I am refusing to take medications that will stimulate my pancreas to “pick up the slack.” I consider that to be an antiquated therapy for type 2s and a totally whacked idea for type 1.5s. Dr. Bernstein is not a fan of the sulfonylureas.

Ketones are generated when you burn fat. You actually generate ketones all the time, it is only dangerous when your blood sugar gets high and you become severely insulin depleted. That is when you have a risk of DKA. Your body screams for energy, and your liver works overtime to produce glucose and ketones, but without insulin you are unable to take up that energy. If your pancreas is functioning, you are producing “some” insulin and that will suppress DKA. You rarely hear about t2s in DKA because of this. As a type 1.5 with some residual insulin production, you probably have some similar resilience against DKA.

But in either case, why expose yourself to risk, I vote for staying the course with insulin.

I’d also tell my endo that he was a bozo for not being able to get a simple test done in a week. Ok, maybe not the bozo comment.

4

Well, here’s my thinking. Let’s say I am Type 1.5. Why wouldn’t I want to exploit my partially functioning pancreas for a few years and live a somewhat normal life without the hours and hours spent testing, dosing, recovering etc. with the insulin regimen, especially if it’s an eventuality either way? Just like you and I were talking about on my last post about exercise. I just want to exercise, or eat or sleep or do whatever without having to worry. And if orals allow me to do that for a few years and put me in the same place I’m going to be anyway, then why is that wrong? And who am I to question an endo, really?

You have to remember too, that I’m in Canada. Clearly we’re waaaayy behind when it comes to LADA. People just don’t believe it exists. You pretty much have to beg, cry, exhaust all other options, be on your deathbed, etc. to get a c-peptide or an antibody test done. And you can’t circumvent the system by paying for it somewhere. It’s not the endo’s fault it’s like this.

5

I was never officially diagnosed with 1.5, but I did spend a stretch being called a T2 (before my antibody testing came back wildly positive)… honestly insulin is WAY easier to manage than oral meds. Your failing pancreas will continue to do just that - FAIL. You may have some success at first, but it usually doesn’t last long… plus with Oral meds you must rely on your doctor to make appropriate changes in dosage to manage your BG. On insulin, YOU have that control… and the ability to make any changes on the fly. If you need less, you take less, if you need more, you take more. You don’t have that flexibility on oral meds.

I honestly feel that insulin helps preserve what beta cell function you do have, because your pancreas is only needed to take up the slack, it’s NOT trying to provide a full physiologic level of insulin for your body. Oral meds might make your pancreas do that for a while well enough for a while, but if you do have T1 it won’t last… why stress it further? Wouldn’t you want it to keep working in the background as long as possible?

I went several months between a pregnancy where I was on insulin, to to seeing a doctor who allowed me to insulin and gave me scripts for Humalog and Lantus (I started on Lantus about one month after it hit the market here in the US)… during a majority of the time inbetween I was self-medicating myself with R and N. I know I would have ended up in DKA if I hadn’t been. My antibody tests came back wildly positive maybe a month or so after I started seeing a doctor that knew what they were doing.

It was a full 18 months from the time I was initially diagnosed during my first pregnancy to when I was certain I was “done” honeymooning. I think a large part of why my honeymoon lasted so long as because I was on insulin… if I’d been on oral meds, and relying only on that while I was able, I think my pancreas could have burned out much sooner. I went from rarely having numbers much above 200 to suddenly seeing 400’s if any little thing went wrong. It happened relatively quick… it’s like I had a safety net if I snacked more than I thought, or miscalculated a bolus, or had a bad infusion site, and then it was just gone. A high for me during my honeymoon was pretty much anything over 150… after, well, lets just say the meter has greeted me with a “HI” more than once and not always because I did something completely stupid. Most are in the 300’s… even with a CGM sometimes it happens faster than I can do anything about it.

My thoughts are… it will take no more than 48-72 hours to know if you really “need” insulin if you did stop taking it. In my case, back when I was being told to take oral meds, my BG would not skyrocket immediately, but I’d work all day to do things to bring it down, and it would fluctuate some, but overall would just steadily climb… it would take a few days to really get out of control to where I was spilling ketones. At first I was only correcting highs over 300 (or any time I had ketones) with R, despite my doctor telling me NOT to. After a while I started taking some N again to help prevent the gradual rise… I was a new mom, and I felt completely lousy at 300, so in my mind it was necessary, even though my doctor at the time kept telling me to “give the oral meds a chance to work” and completely dismissing the fact that I often had ketones. It was not long after that when I switched doctors to one who wasn’t trying to kill me (I lost 35-40lbs in that time, and that was ON TOP of the baby weight I lost from my pregnancy). I was only taking tiny doses of insulin at that point… 2-3u was enough to bring me down from a 300. Over time I needed more, and I plateaued at a TDD of 18-20u for a very long time.

That said, I really do think your Doctor is doing the right thing… it is confusing and I know it’s frustrating to feel stick in the middle while they try to figure out what’s going on, but in the meantime the only thing that really matters is glucose control… it’s really your choice on how to do that at this point, as long as what you choose is working for you. That holds true for now, as well as in the future… there are a lot of T1’s who use insulin and certain oral meds (like metformin) and there are T2’s who could probably do okay on just oral meds, who also take insulin too - it’s not a right/wrong scenario, it’s very much a “what works for you” kind of thing… if it’s working, don’t change it, if it’s not, then look into other options :slight_smile:

6

Hi Kelly: My official diagnosis is Type 1 autoimmune diabetes, but I was diagnosed at age 35, and like most people diagnosed as adults I had a long honeymoon period. My personal opinion is that you should stay on insulin, and do intensive insulin therapy. It makes a huge difference in prolonging the honeymoon, and a longer honeymoon has lots of positive aspects including much easier to control blood sugars. In the DCCT, all subjects with adult-onset Type 1 diabetes had some residual beta cell function (Bernard Zinman MD, DCCT). Those who were assigned to the intensive insulin therapy group were slower to lose residual beta cell function than the conventional therapy group (risk reduction 57%). Clearly, early intensive insulin therapy has enormous benefit. As demonstrated in the DCCT, “intensive therapy for Type 1 diabetes helps sustain endogenous insulin secretion, which, in turn, is associated with better metabolic control and lower risk for hyperglycemia and chronic complications.” LADA researchers in Japan (Kobayashi et al, 2002) have conclusively demonstrated that better preservation of beta cell function occurs with exogenous insulin compared to sulfonylureas, and that sulfonylureas hasten beta cell destruction. In other words, doctors may inappropriately use Type 2 therapies in new-onset Type 1 diabetes/LADA, but all scientific studies indicate that the correct therapy is intensive insulin therapy. Also, an article in the July 2007 issue of “Diabetes Care” indicated that autoimmune gestational diabetes (new onset Type 1 diabetes) accounts for about 10% of all Caucasian women diagnosed with gestational diabetes.

7

So the idea behind early insulin use is that it can stress your pancreas and can accelerate the decline of your beta cells. If you suffer blood sugars above 140mg/dl for any length of time, research suggests that this is toxic to your beta cells (glucotoxicity). Well you might ask, if I am going to lose it anyway why worry.

Well, almost nobody loses all their beta cells. I know it seems strange, but Dr. B once noted that he only knew of two patients in all his years who had absolute zero insulin production (he was one of them). Type 1 patients, even long-term type1s still retain residual insulin production, albeit far below what is needed. Many believe that having some residual insulin production is really beneficial, enabling tighter control and being generally protective. And, listen carefully, if it turns out a way is found to block the autoimmune reaction, I personally believe that carefully guarding your remaining beta cells may be your last hope of a cure in the future.

I can sympathize with your frustration. I argued and argued for a c-peptide, only to be given it to shut me up and then it come out low. Then I started arguing a GAD test and after a year of repeated demands for a GAD and insulin I was told to either see a new endo or a psychiatrist. So here I am with a new endo, and I’ve finally had one ordered for my next endo appointment after spending another 9 month with him, but I am now on three medications which are just not working. I’m spending a large amount of my day above 140 mg/dl (and I am a Bernstein follower) and believe me, I’d rather be on a MDI with syringes, but the only way I can do that is to defy my doctors advice and use insulin on my own. So my heart goes out to you. It is really easy to feel let down by the medical system.

8

By autoimmune gestational diabetes, do you mean these women actually developed Type 1 diabetes due to the stress of pregnancy? I’d been told that about Type 2, but never Type 1.

9

That’s exactly how I feel. I got the impression yesterday that even if my GAD test comes back positive, he still wants to put me on metformin and sulfonylureas. I waited 7 months to see him and he basically wants to do what I’d been resisting from my family doctor.

I believe so strongly in what you say about honeymooning. I’ve had that experience more than once and it’s the reason, I believe I’m in this position today. I had a great endocrinologist in pregnancy who thought I might be what she called a “slow progressing Type 1.” Then after I gave birth to my second son, and for six weeks after I was just kinda pre-diabetic. So she said, “well it looks like you’re Type 2. Lose the baby weight and you should be fine.” But as soon as I was discharged from her care, low and behold I spike into the 200s fasting and high 200s during the day and it stays like that. But I didn’t have ketones so I think my family doc only have believed me. It’s weird too, because every once in a while I have a bunch of lows in a row for no reason I can identify. So I think I’m healed, dial down my insulin, only to spike back up within a few days.

10

I found that interesting as well. I initially though, heck autoimmunity can be triggered by environment, pregnancy is a huge change in environment, perhaps…

I looked at the paper (Diabetes Care July 2007 vol. 30 no. Supplement 2 S105-S111 ). It says

A small minority (≤10% in most studies) of women with GDM have circulating antibodies to pancreatic islets (anti-islet cell antibodies) or to β-cell antigens such as GAD (anti-GAD antibodies)

and then notes:

They appear to have evolving type 1 diabetes that comes to clinical attention through routine glucose screening during pregnancy. Whether pregnancy can actually initiate or accelerate islet-directed autoimmunity is unknown.

So, it appears to speculate that they only “noticed” that these women had autoimmune diabetes because they displayed gestational diabetes. Presumably, if you were already LADA, the stress of pregnancy could make it come on faster and you might get this effect.

11

Yes, the stress of pregnancy is “the straw that broke the camel’s back” for many women who develop Type 1 diabetes during pregnancy (autoimmune gestational diabetes). In Europe, all of the literature on gestational diabetes mentions this, but here in North America the layperson literature doesn’t mention that. However, the existence of autoimmune gestational diabetes is widely reported in North American scientific literature (for example, the July 2007 “Diabetes Care” article I mention above and also an April 2003 “Diabetes Care” article on GDM). In a German study that was summarized in "Diabetes Forecast (August 1998), 43% of women who developed gestational diabetes were antibody positive and went on to have full blown Type 1 diabetes. They did not have diabetes prior to pregnancy.

12

I’m a little confused. I though the rates of occurrence of GDM was markedly higher than type 1, which would make the 43% rate a bit strange. I thought about 4% of pregnant women are diagnosed with GDM, that is much higher than the type 1 rate (about 1 in 800 or .13%). Am I wrong? Or is there something else going on. I really doubt women with latent autoimmune are just predisposed to get pregnant.

13

We make more attractive mates!

Wow, so Melitta, you’re saying that according to that study, of all the women with gestational diabetes almost half of them were autoimmune diabetics? I have a hard time believing that. I’ve met about 30 other moms with gestational diabetes (in person, not here) and they all were over 30, none needed insulin to control it and it went away in all cases. I actually met two women who had children quite far apart, like first one in early twenties and second in late thirties and they had gestational only in the latter pregnancy. I think this is a much more typical profile for gestational diabetes.

14

For the record, I suspect pregnancy triggered my autoimmune response as well… I had totally normal prenatal bloodwork done at the end of my first trimester, with a perfectly normal BG level. I was diagnosed diabetic (as GD) shortly after 19 weeks, with a random BG over 400… the bloodwork was done to keep an eye on my liver function because my doctor thought due to my age I was at higher risk of developing pre-eclampsia (though as I found out later with babies #2 and #3 my BP while pregnant is on the higher end of normal (normal for me is like 115/70… while pregnant it’s more like 135/85, right on the cusp of them wanting to treat it… but it STAYS THERE, it doesn’t go higher and I never developed Pre-E with any of them). Anyways, a random BG so high really doesn’t happen with GD or even T2 so soon after a normal level. It was just over 6 weeks between them. I always had doubts from the beginning if it was GD… I did not come across another woman with GD that ever had a BG much over 200, nevermind 400+, and I had an uphill struggle as a result of that GD diagnosis. I’ve been officially diagnosed with all 3 major kind of diabetes… two of which were misdiagnosed.

I’ve come across a handful of people who had GD and were then discovered to have T1 (not, not developed T1 years later, literally transitioned from GD to full time diabetic immediately)… my CDE says she’s had quite a few patients who presented that way. It’s not common, but not impossible either… being pregnant sort of leads automatically to a GD diagnosis, even if you were to present in DKA while pregnant.

I won’t get into the argument of maybe I had LADA or a slower onset form of T1 prior to my pregnancy, and getting pregnant pushed my residual beta cell function too far, because really it’s irrelevant… my BG was normal when it had been checked, and then suddenly NOT normal… and obviously I’m T1 now, so I don’t really put myself into any of the inbetween categories. I was never really symptomatic (other than being thirsty and peeing a lot, but I was pregnant, so that’s not exactly a big red flag) and I have no family history of either kind of diabetes.

15

Hi Kelly: Probably the “10% of all Caucasian women diagnosed with gestational diabetes have Type 1 diabetes” is the accurate one. In the German study, the percentage is skewed because there was follow up over many years, and evidently the women with autoimmune gestational diabetes/Type 1 were the ones who continued in the study, while more non-autoimmune GDMers dropped out. So it is much more common for women with GDM to later be diagnosed with Type 2, and a small subset (~10%) immediately have Type 1 or later have full-blown Type 1. What I thought was significant about the German study was that most of the women who required insulin during pregnancy were antibody positive (indicative of the autoimmune response). Also, autoimmune gestational diabetes tends to show up earlier in the pregnancy than “conventional” GDM. All fascinating stuff. Amy Tenderich of diabetesmine.com was diagnosed after her third pregnancy (age 37) and Mary Tyler Moore was diagnosed after a miscarriage (age 33).

16

Well, I wouldn’t rule it out. I wasn’t implying that I didn’t believe I had diabetes before pregnancy, quite the opposite. I actually believe I had diabetes since about 2005, a year or so before my pregnancy with my son.

My whole journey started when I was working as an editor a small town newspaper. At the time we were using manual focus cameras and my publisher came to me and asked why my photos were always blurry. I thought they looked fine but that, combined with the fact that I was always getting razzed about how close I zoomed into pages to edit them, made me take a trip the town’s optician. In one year I went from a prescription of -.25 in both eyes to -2.25 and -1.5. (My prescription is now somewhere around -4.5 and worsening). He told me to take a diabetes test. I went to the local walk-in clinic, he took one look at me and said, “you’re too young, you’re too fit and you’re not sick enough.” I did a random test about four hours after eating. I never got a call back so I thought for a very long time that that meant I was clear. Up until last July, I would’ve passed a random glucose if I hadn’t eaten in that long. And so it went, every six months back the eye doctor for new prescriptions.

It was around this time that I also got persistant infections that wouldn’t go away. I was told I was resistant because I used the medication too much. I also needed naps when I came home from work. And I did my exercising at night because I wouldn’t otherwise be able to stay awake throughout the day. I was 25.

Then I got pregnant with my first son. I hired a team of three midwives to treat me throughout the pregnancy and birth. I had sugar in my urine very early in the pregnancy and they kept telling me I was just eating poorly. I told them the story about what happened with the optician, which made them dismiss the possibility that this is anything but gestational diabetes. So I was put on no carbs for the rest of the pregnancy. That didn’t work because by the time I was 36 weeks pregnant, I had blood pressure of 150/110 and edema. I was induced at 37 weeks and my son was 8 lbs 11 oz, which is huge for that gestation. Vaccuum birth. He looked like a little sumo wrestler. They never sent me for an ogtt or a fasting test, but blood tests two hours after meals and they came back ranging from 6.8 to 9.5 mmols (remember I was eating almost no carbs, which in itself is horrible advice).

So next pregnancy comes around and I tell my gp that I had some troubles with sugars in my urine in the first pregnancy. She ignores it and we proceed. Then when I was four months pregnant, I got a very bad cold/flu and I lost 6 kgs in two weeks! I go back to her and she sends me for an ogtt. It’s 18 mmols. She sends me to an endo who requests an A1c. It’s 6.7. I think I’ve told the rest of the story.

17

An update – So I spent the weekend mulling over your advice and decided I will go off insulin to see where I land. If of course my numbers jump substantially, I will take my insulin again to be safe.

As far as the treatment that was recommended for me. I’ve decided that even if I turn out to be a true Type 2, I will not take any medication that stimulates my pancreas to produce more insulin. If I can’t manage my blood sugars with other oral medications, then I’m ok with supplimenting them with insulin.

I’m going to take a break from TU for a while because I just need some time to not think about my diabetes and get back to being a mom and wife and all the other things that I am. Thanks so much for your input, all!

18

Each of us must find our own way. I’m sure that you know the signs that things are not working and will take appropriate action should it be needed. It is fine to take a break from things for a while, but just remember, in the end only you can properly take care of yourself. Do come back and tell us how things are going.