Newly Diagnosed at 40

Newly Diagnosed Support
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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.

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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!

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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.

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Hi Sarah, Im Sarah, 41 years old, and newly diagnosed with an A1C of 11.4 at the time of diagnosis. I just wanted to say hello and you are not alone in the 40 year old Sarah with a T1D diagnosis club. Wishing you all the best from Paso Robles, CA.

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Hi Sarah,
Your experience is typical.
I found a great deal of literature was published about 2015-16 initiated from Ireland regarding the misdiagnosis of T1. They found from 78 to 92% of MD’s misdiagnosed T1 as T2. Per the NIH, this lag is termed “Clinical Inertia” and the poster boy for “Clinical Inertia” the T1 misdiagnosis!
I was 72 and could not make the top stair going up just one floor. The Dr’s office said I had T2 due to my age. I knew I had T3 (from pancreatitis), my A1C at 7.4 and should have been on insulin at 6.5. The Dr’s office said I had T2 due to my age and T3 did not exist.
T3 is now becoming slowly officially folded into T1 as we are insulin dependent. Changing providers, I had an insulin Rx within an hour and they asked how fast could I get it mail order - 4 to 5 days but that was pushing the limit.
I quickly developed the typical T1 “attitude”: Be vigilant, push as hard as needed, confront when their answers don’t make sense, AND change providers if they don’t like your typical T1 attitude - that is just reality for us.

I am doing excellent and still have the same diabetes team after 4 years.

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Douglas @djames313, be aware that the four Diabetes Classifications have been around for years, and do not have anything to do about a diabetes variety [more than a half dozen, and counting] requires management by insulin. Autoimmune diabetes, these days often referred to as TypeOne, T1D, etc. sits by itself in Classification I and requires insulin from outside source.

Classification III where your pancreatic variety sits along with monogenic, drug induced [chemo], pancreas removal/cancer, environmental poisoning [Agent Orange], etc. are not caused by a body’s autoimmune system attack so are excluded from Classification I/TypeOne but do require insulin from outside source for management.

I certainly enforce your statement suggesting that Medical Doctors need to be better educated - but even the best of them can occasionally misdiagnose diabetes.

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I swear the everybody is a “diabetes expert” and if you don’t believe it, just ask them. Seems harsh!

Classification of diabetes types is a moving target. The best classification list I have found is Univ Cal/ San Francisco. That list exactly agrees with the W.H.O. list except the top level titles. Note that T3 also includes genetic disorders and even cystic fibrosis.

I will explain why a T3 solution will benefit T1’s in the shortest amount of time with the fewest resources. From what I’m told by my providers is there is no treatment difference between T1 and T3. In my case the only difference is that I don’t have to worry about DKA like the pure autoimmune T1’s do. There are at most 2-3 conditions the T3’s don’t have to worry about like the autoimmune’s do.

Unfortunately the “quiet part” is the competition for dollars for organizations and research. Finding a ‘cure’ for exogenous T3 is easier than a ‘cure’ for T1 because the T3 may not have recurrent attacks, I say this because the pancreas must be first fixed, solving the autoimmune response alone does not produce insulin. Autoimmune responses are hard to identify and isolate. Another “quiet part” is there are more T3’s than T1’s. I do see huge opportunity for progress if we avoid the fight for recognition - just build the solution upon solid science. I personally have had great success with my primary autoimmune condition through control of environmental factors - it took years.
.

Earlier this year, I did see a formal medical diagnosis chart showing the T3 being folded into the T1’s. Further confusion of the autoimmune T1 is some of these T1’s have no T1 antibody. This is just going back to the old idea of insulin dependent and the endo deals with a non performing pancreas. The strange part is the autoimmune drug causing my pancreatitis is used to treat pancreatitis!

When I was first diagnosed, I asked if I should put T3 on my bracelet. I was told NO, use T1 because T3 will just confuse the first responders.

Doug

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It is unfortunate that T1D is very frequently misdiagnosed as T2D. It is a significant education effort that Breakthrough T1D is driving. Primary Care physicians are generally not aware that about half of all cases of T1D occurs in adults. I have attached a link to the latest Diabetes Standard of Care, very recently published by ADA. As it is written for medical professionals, it is rather technical in nature. But it is useful to pass along to your primary care physician if they question the incidence of T1D. It clearly states that T1D does indeed occur in adults. And it lays out a very nice flow chart for distinguishing T1D from T2D, as well as other forms of Diabetes.

Diabetes Standard of Care

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@Photom Welcome Mark to this T1D Community Forum sponsored by Breakthrough!

Thank you for including the link, but I’ll clarify a few items; if you look at the Forum history you will see several/many references to this document that I’ve made over the years. The ADA SOC is not new, originally published in a hard copy tome; the major advance over the last half dozen years is the “interactive format” that permits continual update.

For anyone reading this online version, I caution not to jump to a particular section without carefully begining at the front and being familiar with the codes assigned to certain sections - much of the volume is data and “advice” put forward by the Consortium of Experts" and very reliable, other sections, often recently added, heave notations indicating that they are not fully vetted.

It is also noted in this SOC that accurate diagnosis as to which variety of diabetes is involved is that even experts may not get it right on initial attempt.

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Thanks for the comments. Perhaps I didn’t make my intent clear. While the SOC from ADA has been around for a few years, as you indicate. But many PCPs are not aware and many continue to believe that only children develop T1D. For those potential new cases by patients that are knowledgeable about T1D ( e.g. other family members have T1D), the 2024 is a way of advocating for oneself— not to fully adsorb personally, but to offer the PCP other options. The new 2024 version provides the best thinking to date, that includes an improved pathway for distinguishing T1D from T2D.

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You are most correct to be upset with that level of care. I hope your endocrinologist will be able to discuss this with your primary care doctor and educate them about T1D appearing at this age

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[quote=“HisWifeTheirMama, post:1, topic:73805, full:true”]

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Welcome! I’m so sorry you had to go through all of that—it sounds incredibly frustrating and stressful. You absolutely have every right to be upset about the wait, especially when you already knew what you were dealing with. Being brushed off by a doctor when you have a clear understanding of your situation must have been infuriating, especially given your background in managing Type 1 with your son.

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I was diagnosed a year ago at 35 and had a similar experience and struggled to get cgm/ insulin. briefly considered alcoholism, but that didnt work out as i’m a light weight. Ended up firing my PCP and endo and finding a new team to get a cgm and insulin. this group was very helpful - great place to be!

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