The specific drug to ask about is probably Teplizumab, a monoclonal antibody which was recently FDA approved:
Your endo can say more, but I wish I had been informed that this was under development for the 6 years that I was antibody positive but still had an A1C under the diabetic threshold.
It’s common for a type 1 to lose weight before they are diagnosed, it’s one of the signs of being a type 1. Since you are lacking insulin, you aren’t actually utilizing all that food you eat. It is then common to gain weight after you start insulin, because you are eating extra food you don’t actually need.
You didn’t actually say you were in the hospital from DKA. That changes my thought of you having time to wait about using insulin even with your good numbers. If you went into DKA it could easily happen again. That showed a severe lack of insulin production and it sounds like it was ongoing for a while? You need to watch for the early signs as it can escalate very fast and be very dangerous. Insulin on hand would be a very good idea to have easily available. While a basal helps to not go into DKA, DKA is a lack of insulin, not having enough insulin can cause it too. I still think a bolus insulin is also a good idea.
@jpf I realize you’re probably inundated with information, if you’re interested in drugs/trials regarding treatment of and delaying T1 onset:
https://www.trialnet.org/events-news/blog/teplizumab-first-drug-delay-diagnosis-t1d-median-two-years
The word “cure” shouldn’t be used, its misleading at best.
Thank you! I will definitely ask about that. The article mentions different stages of T1 diabetes which I want to learn more about.
I don’t know how long I had DKA actually. I got very sick about 2 weeks after I had covid in the fall - horrible leg cramps at night, insatiable thirst, very dry mouth, blurred vision that changed day to day, no appetite, weight loss, burning muscles when I climbed the stairs or dried my hair, extreme fatigue. I look at that list now and see diabetes symptoms but at the time I honestly thought it was lingering covid and stress. After 7-8 weeks of trying to manage on my own, I emailed my PCP with the list of symptoms and she said to come in for blood work which showed bg of 580, an A1C of 14 and DKA. Prior to all this, I had never had an abnormal glucose test at yearly checkups. No diabetes in the family either but I do have Hashimoto’s which I guess makes me at a higher risk for developing T1.
All this is to say, you’re right Marie, I really should have a bolus insulin at home! I will ask the Diabetic nurse educator tomorrow. The endo appt was pushed off to mid-March.
Thank you Tom! These were very interesting and I will definitely bring them up at my next appt. I feel that being an educated, engaged patient can either push a doctor to be better or make them defensive. We’ll see how it goes. I have appts with 2 other endos that were recommended so I am hopeful I’ll find a good fit.
Covid has been known to set off type 1 and type 2 diabetes. It actually can attack the pancreatic beta cells. This is a couple of articles about it. It could explain why you got so sick and went into DKA and are doing better for now. Since you have the antibodies though, it does mean you have type 1, but the honeymoon period can last years.
Metformin has also been used in cancer treatment and prevention.
I used for several years after cancer in 2013. Still use now, but not continuously.
I also didn’t catch that you had DKA already. I’m very much not a doctor (nor your doctor!) but I’d advise at least filling that insulin script and familiarizing yourself with injection technique. The reason is that honeymoons can end slowly, or very suddenly, and having insulin on hand means you won’t be unprepared if your pancreas abruptly decides to give up. Something to discuss with your CDE at least.
@jpf Sorry if I sounded like you should go in challenging your doc or be one of those people asking for the latest medication. Docs know or should know a lot more about meds than we do. I do strongly believe any T1 needs to do their own research and be their own advocate, the CEO that depends on a team of experts. Most docs strive and attain relative currency in their fields, and staying current is time consuming given the magnitude of health advances. That said, that’s what we pay them for, why they get the real/perceived “big bucks” and deference. More, I hold anyone impacting peoples lives (docs, cops, firemen, teachers, judges, [I’d like to say politicians]) to a higher level of scrutiny (some should get paid more than they receive). I have higher standards of expectation, particularly those in positions of trust (doctors, bridge/tunnel engineers), and those that “self-enforce” professional quality. We hear too frequently docs overly reliant on what medical school taught 10, 20, 30 years ago that haven’t updated their knowledge in that same period, yet dispense as fact what is now know to be questionable, if not wrong. Further, some of the advice appears so conservative it seems designed as legal protection, vice treatment. I don’t expect Docs/Endo’s to know the “bleeding edge” science, but perhaps it’s reasonable to expect awareness of current major medical/pharma/FDA issues in their area of expertise that a lay person can do with a simple online search.
Thank you for the articles Marie! I feel like the whole covid/T1 connection might be one rabbit hole I’ll avoid for a bit. Just need to get a handle on the day to day for now. I’m sure as my diabetes story evolves, I will the covid info will become more important!
I’m with you 100%. At this stage, I become easily intimidated at doctors’ visits so hearing the experience of everyone here has been so helpful!
Hello! Glucose Revolution by Jesse Inchauspe is full of valuable information about food and glucose levels. I use her tools daily. My daughter is also in her honeymoon phase, diagnosed back in October. She currently isn’t using any insulin and maintaining an average glucose around 90-100.
Hi, I was diagnosed LADA 22 months ago at 46. If you can get a CGM - get it!!! The data it gives you is so helpful - not only checking your pre/post meal glucose, but to see the patterns in your sugars over time.
Drs really like to introduce insulin slowly - but remember - high blood sugars can lead to complications. If you can maintain a 150, you can maintain a 110.
When newly diagnosed, it’s like drinking from a firehose….so much to learn - not to mention the emotional blow that comes initially from the diagnosis.
Don’t be passive. Follow TCOYD (two docs both with Type 1), Integrated Diabetes, the Juicebox podcast…. This forum - there is so much great info out there. It also takes time. As much as you want to know everything right away, you have to live it. every day you will get more used to the process.
I was unhappy with the large range my drs gave me and now maintain better numbers. Get educated on the different insulins and try them out. See how they work with different foods, different timing, different activities.
So much of this condition involves experimentation. Don’t worry you will get there. You got this!
As
This is good to hear! I appreciate your sharing the book recommendation too. I’ve been on vacation this week and immersed in the LADA T1 world.
Thank you for sharing your experience Varvara! You are so right about the fire hose.
Did you have a honeymoon period after diagnosis when you weren’t using insulin - or did you start on it right away?
I agree about the CGM. After a first failed attempt at the freestyle Libre 3, I installed the second one on Thursday afternoon. There were a couple of extremely high/low readings (30-40 pt difference from BG meter reading) but last night and today the numbers have been very close. Fingers crossed this continues!
My hunch is yes - but my first doc said I was pre-diabetic (gave me metformin) and would get Type 2. I knew it wasn’t type 2 just did not think it could be Type 1. Only when I went back with super high sugars and a 12.6 a1c did I get the LADA diagnosis. They tested my antibodies etc.
there will often be differences in readings. Look at Trend Arrows in the moment and patterns over time.
I use a Dexcom, but I believe with Libre you can run reports as well. The data is really helpful in seeing how my sugars flow throughout the day- and where I need more help/adjustment.
I’m a big exerciser and have found that figuring out how to prepare for different types of training to be the most challenging. Always an experiment
Welcome to FUD @jpf !! Looks like you are getting some good information to help with your learning journey. Hang in there, the mountain of learning is steep at first but levels off after awhile.
For me, when the endo saw the antibody results she said “You have type 1, so you need insulin” and started me right away on Lantus and Novolog, even though the C-peptide test said I was still making a considerable amount of insulin.