Why no type 1.5?

By Anonymous Latest Reply 2015-03-29 11:15:31 -0500
Started 2015-03-28 18:08:27 -0500

I've recently been diagnosed as a diabetic. Thing is, I don't fit in any classic diabetes categories. By definition I'm a type 1.5, or commonly known as LADA. It starts with type 2 symptoms, but in reality it's the beginning of type 1. Oral medication works initially as the symptoms creep up and worsen gradually, but eventually the pancreas is no longer able to produce any insulin and you become a full fledged type 1 diabetic.

I've been having a hard time connecting with diabetics in online places because I simply don't fit into any single place at this stage. I'm not a type 2 even if my treatment is currently similar, and I'm not a type 1 even if I eventually become insulin dependent. It's frustrating, as most don't understand it, refuse to acknowledge it (there are doctors who refuse to acknowledge it too!) or try to give me advice that simply doesn't work for me. Furthermore it's hard to find people who went through the same thing - it really isn't the same as being fully diagnosed as one or the other and knowing exactly where you're at and what to do.

Are there any others with 1.5 around these parts? What are your experiences with the progress of the condition and the switch from oral meds to insulin? When did you figure out when to switch?

7 replies

kimfing 2015-03-29 11:15:31 -0500 Report

I was dx t1 at 44. Dr ran the gad blood test showing i have all the markers for t1. Was managing on metformin and levemir and ultra low carb but was dropping too much weight. Dr put me on meantime insulin and my honeymoon period ended last July right after going on the pump.

GabbyPA 2015-03-29 11:13:30 -0500 Report

There are a few members here that are type 1.5 (diagnosed anyway) It is a growing group and also type 3 is now being studied more closely. There is always new science out there.

I would talk to your doctor because there are tests that can be done to measure how much output your pancreas is doing and when that change over might be required.

Jibber Jabber
Jibber Jabber 2015-03-28 18:26:32 -0500 Report

I am of the belief that many people that have been diagnosed with type 2 are actually 1.5…Most doctors just assume that because type 2 is mostly "adult onset" that when the typical adult is diagnosed they are assumed to be type two…I have read many stories of "type twos" who no matter what they did…no matter how much they cut their carb consumption back ended up requiring insulin…so you are not alone, not by a long shot…you just have a diagnosis of 1.5…instead of a misdiagnosis…

Anonymous 2015-03-28 19:19:04 -0500 Report

Thanks for your response. I'm very glad my doctor insisted I get checked for my type. I just turned 27, I'm a little overweight but I'm also very tall for a woman and she said I kind of fell in the gaps between 'being too old for type 1, but being too young for type 2' all things considered. I assumed I was a type 2 up until the bloodwork came back and put me smackdab in the middle. Even the employees at the pharmacy don't know about type 1.5 and they look at me as if I sprouted three extra heads when I explain it to them.

I don't know how many people are misdiagnosed, but I hope that 1.5 will become more widespread and understood. It's no fun being in a virtual limbo with it.

Type1Lou 2015-03-29 09:45:45 -0500 Report

I was diagnosed as a Type 1 at age 27. My C-peptide levels verify my Type 1 status. Although Type 1 is rarer in mature adults, it can and does occur. Learn as much as you can about your condition and what you need to do to take and retain control. There is a very large component of self-management in diabetes. The more you learn the better you are able to advocate for yourself. Sorry you've joined the diabetic family but this site has a great deal of information and very supportive members.

Anonymous 2015-03-29 10:17:01 -0500 Report

Thanks for the encouragement. Although I'm not a type 1 quite yet, it will happen eventually. Right now the metformin and gliclazide is helping me manage my levels, but they'll stop working at some point and then it's on insulin for me.

Financially speaking, food is a really rough area for me right now as well, as a lot of carb heavy food and junk food is a lot cheaper than fresh produce and meat - I have to get by on roughly €130 a month for all my groceries and I have to cut corners if I don't want to starve. Combine this with the general lethargy of numerous mental health conditions including depression and anxiety and it's a recipe for disaster. :/ Cooking healthy food at the end of the day can be taxing. I'm very grateful I got a crockpot for my birthday a few days ago, it's a lot more forgiving on the cheaper foods such as tougher meats and I can start 'cooking' at the beginning of the day when I've got more energy. I've seen a couple of really nice recipes on the site for that which I'm trying soon.

My main concern is the transition from oral medication to insulin though. Some people transition within a year of the start of the treatment, others can last for years. My doctor doesn't really know what to look out for except for regular glucose levels checkups, so I've been wondering what sort of experiences others have.

Jibber Jabber
Jibber Jabber 2015-03-28 19:46:48 -0500 Report

You are lucky…You actually have a doctor that took the time to check…most do not..and with type 2 occurring more often in children and teens..and the existence of type 1.5…I don't understand why a doctor wouldn't test everyone…

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