I need help advice from my Type 1.5 friends - Anyone been told you're Type 1.5 and put on orals?
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.
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.
Replies to This Discussion
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Permalink Reply by Katsz on -
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.
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Permalink Reply by Brian (bsc) on -
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.
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Permalink Reply by Kelly on
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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.
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Permalink Reply by Brian (bsc) on
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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.
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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.
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Permalink Reply by Sarah on -
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 :)
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Permalink Reply by Melitta on
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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.
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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.
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Permalink Reply by Brian (bsc) on
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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.
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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.
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Permalink Reply by Brian (bsc) on
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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.
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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.
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