Recently diagnosed 1.5? Confused and feeling alone
Hello everyone. I am new to TuDiabetes and wanted to share my story with you and find out if anyone has experienced something similar to me. I was diagnosed with diabetes in February this year and so far have been managing my my symptoms with diet and exercise. I am 25, have a history of type two diabetes in my family and also autoimmune disorders. I'm quite tall and very slim, so don't really fit into the type 2 box but I still produce insulin but the level I produce is a the lower end of 'normal' - so I don't really fit into the type 1 box either. My endo tells me I am a "medical mystery" because while I met diagnostic criteria for diabetes twice on glucose tolerance tests, I do not have the beta cell antibodies (which most of you on here seem to have) - my doctor tells me that this can occur in 10% of people? Does anyone on here have type 1.5 but no antibodies too?
My blood sugar levels certainly go high if I eat the wrong types of food, but since changing to a low GI diet this has been more under control. The main problem I experience each day are hypos - I seem to by quite sensitive to drops in my blood sugar levels and get symptomatic before I most people do - when my blood sugar levels are between 4 and 5. If I don't eat every 1.5 to 2 hours I start to get symptomatic, which has been really difficult to manage when I am at work when I can't always get access to food when I need to.
I am going to see my endo again in November to see if anything has changed. I find it terrifying to think that I might be getting sicker and find it frustrating that there is nothing I can do to stop this process from occurring. From reading some of the forums on here it seems going on insulin early can help, but then I wonder why my endo hasn't pushed for me to do this - she mentioned it when I was first diagnosed and it really upset and shocked me, so maybe she thought we should wait? My dietician has mentioned going on metformin which may give me more time between meals.. but nothing has really progressed there either. I have also hear that metformin can make you lose weight? Is this right? I am quite tall and very slim and can't really afford to lose any more weight - I've lost 5 kilos already this year after having changed my diet and starting to exercise.
Another thing that has cropped up this year has been my doctors telling me that I should try to have children as soon as I can, as by doing so pregnancy should not dramatically make me sicker. I've been told there is a good chance i will be completely insulin dependent once I have children. This has been a big shock to me and I'm finding it another thing that I am having to adjust to. I feel like the plans I had for my career and next few years of my life have been turned upside down since my diagnosis.
Without having the antibodies I'm not sure whether I do really fit in the category for type 1.5... but then i don't know where else I fit and who I can talk to get some support with all of these changes. Has anyone out there experienced something similar to me? Or have any thoughts on what I could be doing now that will help me?
My blood sugar levels certainly go high if I eat the wrong types of food, but since changing to a low GI diet this has been more under control. The main problem I experience each day are hypos - I seem to by quite sensitive to drops in my blood sugar levels and get symptomatic before I most people do - when my blood sugar levels are between 4 and 5. If I don't eat every 1.5 to 2 hours I start to get symptomatic, which has been really difficult to manage when I am at work when I can't always get access to food when I need to.
I am going to see my endo again in November to see if anything has changed. I find it terrifying to think that I might be getting sicker and find it frustrating that there is nothing I can do to stop this process from occurring. From reading some of the forums on here it seems going on insulin early can help, but then I wonder why my endo hasn't pushed for me to do this - she mentioned it when I was first diagnosed and it really upset and shocked me, so maybe she thought we should wait? My dietician has mentioned going on metformin which may give me more time between meals.. but nothing has really progressed there either. I have also hear that metformin can make you lose weight? Is this right? I am quite tall and very slim and can't really afford to lose any more weight - I've lost 5 kilos already this year after having changed my diet and starting to exercise.
Another thing that has cropped up this year has been my doctors telling me that I should try to have children as soon as I can, as by doing so pregnancy should not dramatically make me sicker. I've been told there is a good chance i will be completely insulin dependent once I have children. This has been a big shock to me and I'm finding it another thing that I am having to adjust to. I feel like the plans I had for my career and next few years of my life have been turned upside down since my diagnosis.
Without having the antibodies I'm not sure whether I do really fit in the category for type 1.5... but then i don't know where else I fit and who I can talk to get some support with all of these changes. Has anyone out there experienced something similar to me? Or have any thoughts on what I could be doing now that will help me?
Replies to This Discussion
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Permalink Reply by Gerry on -
Good evening, Polly, and welcome to TuDiabetes! My endocrinologist considers me a "type 1 idiopathic" (cause unknown). I am not overweight, not insulin resistant, but produce no insulin (according to my c-peptide test) and have high-side-of-normal antibodies.
Metformin often has some very unpleasant side effects at normal dosages. When I was first diagnosed in 1998, my primary care physician had me on large doses of several classes of oral diabetes medications. When I first visited my endo in 2000, he smiled and said the oral meds I was taking were not helping and that I really needed insulin. He started me on insulin and we gradually eliminated the oral meds one by one, and found that they really weren't doing anything for me.
Bottom line: insulin has been much better for me with no side effects than the oral meds I was on. I have been pumping since 2007, and I recommend it to anyone willing to study and work to effectively manage their diabetes.
Regards,
Gerry
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Permalink Reply by polly on -
Thanks for your reply Gerry. Sounds like I need to explore the insulin option over diabetes meds. How did you find the transition to the pump?
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Permalink Reply by Gerry on
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I was fortunate: (1) I had an excellent certified pump trainer, and (2) I found, studied and applied the book Pumping Insulin by John Walsh. So my transition was very easy!
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Permalink Reply by Melitta on
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Hi Polly: Welcome! About 10-15% of people with Type 1 diabetes are "idiopathic" and don't have antibodies. Then there is another group of people who aren't Type 2 but have MODY. I would agree with what Gerry says--IMO don't mess around with Type 2 drugs (it's really unlikely you have Type 2), insulin is the treatment of choice. I wrote a blog on misdiagnosis of insulin deficient diabetes; check it out and see if it is useful. And hopefully others like Gerry will provide their input and give some assistance. Best of luck to you! Also remember, a new diagnosis is a big shock and a huge transition.
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Permalink Reply by polly on
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Thank you so much for sharing that link with me. I found it very helpful and answered a lot of my questions. I now have huge list of questions to ask my endo when I see her next. Yes it has been a huge shock.. I think I'm slowly getting there but some days a definitely easier than others!
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Permalink Reply by Brian (bsc) on -
I was in my 40s when diagnosed. I was not particularly overweight (in fact I am basically at my heaviest now). I never really responded to type 2 medications, and I tried a fair number. Metformin, Actos, Byetta, and Victoza. A strict low carb diet was able to control my blood sugar swings, but it never helped my fasting blood sugars. My doctors (and there were a number) were not interested providing tests for properly diagnose me. I eventually got a test of my insulin production (it came in low) and a single antibody test (it came in negative). As long as my blood sugars did not get out of control my doctors fhad no interest in more aggressive diagnosis and treatment. In the end, I forced the insulin issue and with insulin I am finally able to normalize my blood sugar.
Diabetes actually is a complex condition, there may well be dozens of different types. I may never figure out exactly what "kind" you have, but I've come to accept that it really doesn't matter. What really matters is that I am properly able to treat my condotion, and with insulin that I am able to do that.
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Permalink Reply by MidwestMommy on -
Hi Polly --
I think there are quite a few here with a similar diagnosis. Diabetes is so complex, I don't think they have all the different types identified yet. If you are not happy with your endo, then you really should get a 2nd opinion. People live very full lives with T1. The adult onset T1's that I personally know (not from internet) have had very long and easy honeymoons and they seem to make the transition pretty smoothly. Try not to worry.
As far as having babies now, I'm not sure I understand the logic there. You are really young, I don't see any real reason to rush it if you aren't ready. The adult onset females I know were diagnosed after pregnancies, but again it is a very slow onset, much like the symptoms you are seeing now. You can probably have a healthy pregnancy 5 years from now, but you'll have to take special care of yourself of course.
I think sometimes when we talk about a disease progressing, it sounds very ominous and scary - MS, ALS, Parkinson's etc come to mind. But really with T1 or T1.5 we are talking about you being fully functional, just dependent on insulin. Does that help?
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