Newly Diagnosed at 40

Newly Diagnosed Support
1

Hi everyone. I am newly diagnosed as of Wednesday of this week as a 40 year old.

Im a mom to a type 1, my sister has it and my grandfather had it, so I learned a thing or two about it many years ago. Knowing as much as I do in taking care of my son (he was dx’d at 14, hes almost 21 now) helped me in knowing I can manage this.

Ive had a few moments of overwhelm, being that my primary care doctor is awful and its been a stressful few days getting insulin, answers to my questions, and trying to navigate getting set up with an endocrinologist.

I had all the bloodwork a month and a half ago that stated my A1C was 8.5 and fasting glucose was 269. Then, I told my doctor about TrialNet and how I was tested 8 years ago. They told me if I ever develop diabetes it would be Type 1, and to make sure my doctor knew. Well, I told her this, and she wrote me off as if I didnt know what I was talking about, and didnt want to believe it was type 1. “I would be very surprised if it were type 1. Adults hardly grt that.” But because I insisted, she tested me for the antibodies. Sure enough my GAD was 27. So, theres that. The results came back 2 days after the tests were done, and I was forced to wait a month for the diagnosis I knew I had, and medication, even though I called and emailed trying to get a quicker confirmation. “You need to wait till your telehealth on the 28th”, they told me.

Am I wrong for being so upset that I had to wait so long? I feel lucky to not have gone into DKA.

To add insult to injury, I practically had to beg for insulin, as if I dont need it or something. “Not all type 1 diabetics need novolog,” I was told. She barely wanted to provide me with Lantus.

Im glad I advocated for myself. By the time I picked up my prescriptions 2 days ago, I was peeing ketones. I dont want to imagine what would have happened if I was forced to wait any longer.

Well, its nice to be here, nice to meet all of you, and I hope to connect with other ladies like me with T1D. Im in SW Florida.

3 Likes
2

Hi @HisWifeTheirMama and welcome to the forum. I’m so sorry you’ve had such a hard time getting what you needed, but as you probably already know from family association, often we know more about diabetes than some medical professionals. I hope you are able to transfer to a doctor who listens to and respects you and is willing to partner with you in your own care.
Looking forward to seeing you on the forum!

1 Like
3

no, complacency by medical professionals are enough to make anyone furious. But your anger isn’t going to be the thing that helps you, and it could even get in your way.

first, you did nothing wrong to get type 1. so it’s not you or something you did or something you didn’t do.

next, Doctors do not have time to get the full background and spend much of any time doing any real diagnostic thinking. So your doc is (in a general sense) right… 99% of the time it would have been type 2, the patient would be wrong, and as a doctor, you’d have to now spend the next 10 minutes explaining how what you read on the internet is BS. in this case, however, you are right. the doc was wrong, Lucky? maybe, but for a lot of people diagnosed later, the beta cells still function a little and it can prevent you from DKA and you will likely even “:appear” as T2, until your c-peptide approaches zero. truth be told, there is no definitive test that proves you are, or are not T1.

the goals of type 1 and type 2 are similar. : Blood sugar control. The methods are different in that: type 1 needs to replace missing insulin or die, no exceptions. Given you are recently diagnosed you might want to look in to the clinical trials there are some monoclonal antibody treatments that can delay the destruction of beta cells. In the long game, you’ll have to take insulin for carbohydrates like everyone here.

Welcome to the club no one wants to be in, if there is an upside, it’s that the pumps and CGM have come a looooong way and are (imperfect but) much better than 5, 10, 20, and 40 years ago. Hope to see you here on the forum.