Hi everyone. My name is Justin and I live in Ireland. I was diagnosed with T1D last May at age 42 after experiencing symptoms during April (two weeks before my second child was born!). I had extreme thirst and excessive urination for two weeks but the alarm bells only rang when I lost 10kg (22lbs) in the following two weeks. I have always been fit and healthy though I was a fussy eater as a child and a sweets and carbs fiend throughout my life.
Initially my GP doctor was baffled as he thought my age meant Type 1 was unlikely and my physique meant T2 was unlikely. He ordered the antibody tests though and they came back strongly positive (GAD = 157.5) so I guess I do have T1D (or LADA).
The main reason I am on here now is because I feel, based on what I have read online, that my situation is rather unusual so I am looking for insights into the path ahead for my condition or just to hear from others in a similar situation. As soon as I walked out of the doctorās office almost a year ago I stopped eating pretty much all sweets/candy and cut my carbs way down. Within a week my BGs were fairly normal and have remained so without the use of any insulin ever. I do take 2x500 Metformin that was prescribed initially by my GP when we werenāt sure which type I had; my endocrinologist isnāt convinced that the tablets make any difference but I have heard that they are generally pretty good for you. One of my questions is whether I might have some insulin resistance (from a lifetime of very high carb and sugar eating) or perhaps I have both types of diabetes?
My HbA1C was 96 (10.9) in May and has been down to 39 (5.7) since I got updated data 3 and 6 months ago. I have a Dexcom G6 and my BG averages around 6.6 (119) and I am in range 99% of the time. I have spiked above 10 (180) briefly a few times when I have eaten things like white bread with little protein and gone on a long car journey afterwards. I have never had any real lows as I am not on insulin.
My diet is a bit restricted but totally sustainable and is healthy and delicious. I am happy to share info on that if other newbies are interested. I havenāt been doing serious exercise since being diagnosed (I have two small kids!) but I do cycle to work and generally move around a lot and rarely sit down for long. I canāt believe how good walking is for my bloods! Also I have noticed that if I eat lots of protein and fat I can still enjoy a decent portion of carbs with them and not experience a significant rise in BG.
Sorry for the long post, first time Iāve really told my story so far to anyone.
Questions:
Is it unusual to not be on any insulin, including in the initial renormalisation of my BGL?
Might I have both types and have got rid of the T2 element with my change in diet?
How and when would I know if I have LADA and does that make any difference really?
Should I be aiming to get my numbers lower, both for extending my āhoneymoonā (if thatās what this is) and avoiding long-term complications?
Yours is a very intersecting story and Iām glad youāre doing so well with blood sugar management. I was also diagnosed with T1 as an adult: my symptoms came on slowly over a few months and I ignored them due to other stressful circumstances in my life and ended up in hospital and on insulin right away. Hopefully other members will be able to offer some insights into your situation.
When adults develop type 1 diabetes, itās generally not the case that all insulin production is completely wiped out within a couple weeks. Rather, there is a gradual reduction in the number of functioning beta cells, and symptoms start when the remaining beta cells are unable to keep the blood glucose under control. But there is still some lesser amount of insulin production, so reducing carb intake and/or taking certain type 2 medications can reduce the demand for insulin to a low enough level that the remaining beta cells suffice. But this is temporary, as the beta cell destruction continues. My endocrinologist said immediately: āThe antibody tests show that you have type 1, therefore you need insulin.ā
More likely you just reduced your need for insulin to an amount that your remaining beta cells could satisfy. This will not last.
LADA just means you developed type 1 in adulthood. The complete destruction of insulin production may take longer in adulthood than is typical in childhood-onset type 1, but the usual treatment for type 1 applies in either case.
An A1C of 5.7% is considered excellent, and is associated with a low risk of damage to the body from diabetes. So at this point you would be balancing the small additional gain in safety by lowering A1C further, against the additional danger (such as from risk of hypoglycemia or side-effects of medications). My A1C is similar to yours and my endocrinologist is quite pleased. Others would be horrified by the risk of hypoglycemia at this A1C. In my view, the risk of hypoglycemia is completely under my control because I wear an effective CGM, so am alerted to the onset of low BG so that I can solve it before it becomes a problem (I always have a tube of glucose tablets with me.)
In my view, you are a type 1, so you need insulin. And a CGM.
While I think you will eventually need insulin and a CGM, enjoy the simplified management until that time. We have a close friend that is LADA and his disease progression is very slow. You certainly could be in that boat as well. T1s come in many flavors, and we certainly have some people around here who are more like you than the typical T1 story. Thanks for joining.
@JustinHowlett First, none of us here that Iām aware of are doctors, but we offer a great deal of practical experience and advice as T1s, T2s, or parents of these. Iām sure youāll get plenty of good, well intentioned comments from others here on FUD. My own two cents: Sounds like your a classic LADA, if there is such a thing. I had the same symptoms youāve had and similar GAD test results, but at age 66. I was initially dxād T2 (8 years worth), put on metformin, added glyburide/glimeperide, some preventive meds for likely impacts (blood pressure, cholesterol). The metformin and glyburide stopped having any impact and my BGs climbed steadily two years ago, tested for GAD, and was re-dxād T1 with insulin required. It sounds like youāve caught the progression pretty early, but know its progressive and youāll likely need to be on insulin in the future, but that could be long time. No one, including Docs, can currently tell you how long that will be, there are too many variables; heck, the medical community itself isnāt even close to one mind on LADA. It could be months, it could be years. While you need to listen to your docs and the medical community, itās important to do your own research, reach your own conclusions, and be your own advocate throughout whatever develops. Youāll find the medical community has wide ranging opinions on T1, its progression, treatments, etc., but its your life and you need to be in charge of it.
If youāre interested, it sounds like you might be a good candidate for a few studies/treatments with meds that may/can help protect or slow the progression of destruction of your remaining beta cells, hence the need for insulin. There are a couple of them in progress and you could help break new ground on the treatments available. The one most of us are familiar with is by Vertex, but there are similar out there.
Sorry you seem to be joining our āclubā, but welcome to a great group of people that are willing to share their experiences. Ask any questions you likeā¦.
Hi, I guess you can call me Sprite. I was initially diagnosed with Type 1 when I was 20 (a few days before Christmas) just over 12 years ago, but about 8 years ago my diagnosis was changed to LADA - from 2015 to 2018, I didnāt need to give myself any insulin or take any other drugs at all and was checking my blood sugar about once a week back then - and have been using an insulin pen since then (I added long-acting insulin about a year ago). I have been using a Dexcom G6 since 2019, but Iām not on a pump just yet.
Iāve been wanting to join this site for a while (I wouldāve joined sooner if I didnāt stress over coming up with a username for so long), but I took the plunge today because my blood sugar was 498 at 3am today, then after an injection it dropped down to 92 a few hours later and is 204 now before lunch (due to insurance reasons, I have been without my CGM sensors for over a week now and Iām struggling). So here I am!
Hi, all. Mom of a T1D boy here, diagnosed 6 months ago at age 4.
It was as unexpected as it can be, with symptoms only for a week, then misdiagnosed as a respiratory illness by 4 different doctors, finally transferred to a childrenās hospital with correct diagnosis.
It has been a journey, these 6 months, but mostly a lonely journey that we donāt feel we can share positively with the doctors. So weāve been doing what we feel is right and the greatest gratification is seeing our son thriving and happy.
I am quite stressed though, changing 3 homes in 3 years, managing diabetes (I do 99% of that), and dealing with personal issues. I try to stay positive and I donāt really have any time to reflect on this, but I do want to make time for meaningful relationships, conversations with folks like you, maybe even meet in person if you happen to be in Northern Italy.
Some tech info: My son uses the Medtronic 780g pump with the Guardian 4 sensor.
Weāve had one appointment two months after diagnosis and they wrote down that heās in remission. Heās not, he needs insulin for Everything he puts in his mouth. His daily dose totals at around 4u between basal and bolus. But I guess standards are different so compared to the other kids in their care heās doing well. We have another appointment in two days and I am so nervous about it that I might send him just with my husband. I feel I am too sensitive to deal with the dietitian but a part of me wanted to meet the doctors again. Anyway, I do hope they continue to consider him in remission without questioning anything we do.
Thank you for letting me be a part of this community.
You are doing great, especially in such a short time!
I was diagnosed at age 5, and that was 55+ years ago.
Regarding remission, this is often called the honeymoon period, and can vary. Using lower carb meals would reduce insulin required, less stress on pancreas. For some, they find it easier once the unpredictable pancreas sputters out. In adults, this can last awhile, and called LADA.
With cgm and pump, you will know more then they do, so let them question, but you will have data (and confidence) that you are doing well.
Welcome to FUD @Eli! Sorry your son was diagnosed so young. As you read around our site you will find that we have many parents that have been in your shoes and would love to help you. From your intro, it sounds like you are doing the right thing. I was a mess at diagnosis +6 months, just really angry that fate had given my son this disease. But over the last 6 years we have seen that diabetes can be managed and life can be lived fully. It just take a little different approach to make that happen. Looking forward to learning more about your journey.
Thank you for the warm welcome, @MM2 and @Chris. I look forward to getting to know more about your journeys, too, and read about other parentsā experiences. FUD looks like an amazing community.
Welcome @Eli! Harold here, father to Liam, a healthy 8 year old who was diagnosed at 2yo. There are pump users here in FUD of all varieties and although we use the Omnipod system for our sonās insulin deliver, if you ever just want to vent with a parent who understands the struggle, ask questions that you may not have discovered the answers to yet, etc., please send me a PM anytime! I also do total management for our son. My wife and I butted heads so often early on after his diagnosis that we just agreed that for the sake of our own relationship and our son (not wanting him to hear us butting heads so that he keeps the optimistic mindset), and our other children (5 other boys at home atm), that I would be the primary person responsible for Liamās day to day diabetes management. Itās worked out great for usā¦a lot more work for me, but the peace that comes along with it makes up for the extra work. I have never minded the work and have always considered it just a labor of love for my child and something that just needs done, like anything else.
Anyway, welcome once again and reach out if I can help in any way, even if just being there for the venting.
Iām Finn. I got my Type 1 LADA diagnosis on Friday the 13th (of August 2021).
I live in a small town in Germanyās Black Forest. Iām American and while Iām learning German (and learning lots of diabetes-specific words now) and my diabetes team all speak English, I know Iām probably not getting the support a native German speaker would get, so Iāve found a lot of useful info on the web, especially here on FUD.
Iām on MDI - Humalog and Abasaglar, which I think is called just Basaglar in the US
I have a CGM - FreeStyle Libre 2, migrating to FSL 3 later this year
I am very thankful to not have to worry about the health insurance issues people have to deal with in the US. Each pen costs me ā¬1-2 and each sensor is just ā¬5. Blood glucose testing strips are free, as are glucagon pens. Everything is less than ā¬5 a box on prescription.
I enjoy baking and am working to diabet-ify my recipes. Iāve upped the whole grains flour in my pizza dough recipe, figured out the carb count of cookies and currently working on how much flour I can replace with almond flour and how much I can reduce the sugar in baked goods for them to still taste nice.
My profile pic is rainbow waffles I made for my birthday a year before diagnosis. Back in the good olā days when I could eat waffles slathered in maple syrup or jam and not need to consider how much insulin Iād need.
Hey @Finn Welcome to FUD! Your story is bringing back memories of just after my son getting diagnosed and the rush to add the carb count to every recipe we have. Not an easy feat because I cook everyday and like a variety of recipes. I am glad you have found some good information on our forum, but look forward to learning more about you and your LADA progress. That is an interesting topic that isnāt discussed very frequently.
Welcome and good day, you have found a great site there are many knowledgeable and friendly people here willing to help. My father was born and raised in Germany and grandfather was one the scientists that were brought over to the US after the war.
It certainly takes a lot of effort to figure out the carbs in homemade food, but luckily my husband and I are diligent about this sort of stuff and weāre good with spreadsheets so Iāve created some tools to help me with it.
Living in Germany, we get most of our bread from the bakeries around us. Iāve got good carb estimates for those breads, but Iām still figuring out estimates for the delicious pastries and other baked goods they have. As the doctor said before I was discharged from the hospital: āWhat use is living in Germany if you canāt have pretzels?ā
Iāve been reading the posts on FUD a lot in the past few months and finally realised it didnāt make sense to NOT join the conversation. Iām happy to be part of the group now. I think Iāve seen one person with a CGM here (so I assume theyāre Type 1), but besides them, I donāt know of anyone else here with Type 1. Itās nice to have other people to talk diabetes with.
Iām happy to be part of the group now. I think Iāve seen one person with a CGM here (so I assume theyāre Type 1), but besides them, I donāt know of anyone else here with Type 1. Itās nice to have other people to talk diabetes with.