Hello from a newbie and please read about my non-diagnosis... thanks :)

Hi all and thanks for the warm welcome. I would love your opinions on my story. I will try and give you the short version.
I was diagnosed 3 years ago at the age of 37 with Type 2. My grandmother had Type 2, diagnosed at age 60 and was overweight. My mother has lupus which is an autoimmune disorder. I was always very slim until I started having kids. I have still never been overweight although I have put on some pounds in the last year or two – I find I am always hungry now. I have what I consider a reasonable diet and exercise level. I had impaired glucose tolerance in all of my pregnancies, have 3 healthy children and had 3 late miscarriages (14-16 weeks).
After being diagnosed, I managed with diet and exercise for about a year. Well, not really, because my bgs got high and I probably should have started meds sooner. In the past year and a half I started Metformin, more metformin, added Diamicron, saw an endo, she denied any possibility of LADA, switched off Diamicron to Janumet, then dropped the Januvia but kept the Met to begin a clinical trial in Sept. ’10. A1C’s have been in the 7’s this whole time. Study drug has not helped.
By Nov., the endo added Diamicron 30 mg. I worked up my nerve and asked her again about LADA. She said she is 100% sure that I am Type 2 and my progression is normal for Type 2. I went over the possible markers for LADA – not overweight, family history of autoimmune, under 40 at onset. She just kept saying if I had type 1 I would need insulin. In early Dec., my bgs were still high and she upped the Diamicron to 60 mg, two weeks later still high, upped my Metformin to 2mg per day.
I went to my CDE this week and my last A1C was 8.8. He is recommending I stop the study drug and Diamicron and start on Lantus asap. I am so ready, I don’t even care about needles anymore and I used to faint practically at the thought! But after feeling crappy for 3 years, it’s time. I have an appt tomorrow with my family doctor to get the prescription.
It has been driving me bonkers that the endo will not test me for LADA. I can’t really put my finger on why it bothers me so much. I guess I just feel frustrated that I have tried to eat well and exercise and comply with the meds and still my bgs and A1C are so out of whack. I think 3 years is fast progression for someone with a reasonable healthy lifestyle. The CDE tried to reassure me that it doesn’t matter, I need insulin either way. But it matters to me! I realize you can’t diagnose me but…. I have diagnosed myself with LADA!!! I will still ask my family doc to order the tests. But in any case, I need to let this go and move on and the only way I can do that is to satisfy myself that a diagnosis of LADA makes more sense than Type 2.
I came on here because I thought some of you could probably relate to my story and maybe I won’t feel so alone and frustrated. If you made it this far, thanks for reading my about my diabetes journey so far!
Daria

Views: 609

Replies to This Discussion

I understand you fully! I had the same type of problem with my medical team too until recently. I've had diabetes for around 4 years now and have only just got the confirmation that I have LADA/type 1.5. My doctor insisted it was type two and like you I was told that it didn't make any difference if it was or wasn't because both are treated with Insulin. However, it matters a lot. I have only just stopped taking metformin, because if you are type 1 or LADA and your pancreas isn't making any insulin, then the pills are doing you no good. And if you do turn out to be a LADA or a type 1 you have to be more careful what and how you eat, how you exercise and how much insulin you need to take. The regime is totally different as a regular dose of insulin won't work. Meal-time insulins have to be varied to your carbohydrate intake. Believe me, I would rather be a type II insulin user than a type 1.. lol. It's a real nightmare having to do so much carb counting.. but "it is what it is," so to say. My advice is to keep pushing for the test, wear them down. The sooner they get you on the right medication the less complications you are likely to suffer.
Just read your last post. Congratulations on getting your diagnose. Best wishes. xxx
Hi BeachBum: Good that you have gotten more information. Did you get the full suite of antibody tests (GAD, ICA, IA-2) + the c-peptide test? One of the Canadian LADAs, Kelly, was told that she didn't have LADA, but she was actually GAD positive, slightly above range. She just had very slow onset LADA. As I said to her, you can be "a little bit autoimmune" just like you can be "a little bit pregnant!" So I would suggest reviewing your test results. Finally, what is truly important is getting the correct treatment, which, if you are insulin-deficient, is exogenous insulin. How is it going with the Lantus?

It took 4 years after I was erroniously diagnosed as a type 2 diabetic (at age 48), and visits to several different endocronologists before one finally listened to me and and my several notebooks full of notes on what and how much I was eating, how much exercise I was getting, what medications I was taking when, what my blood sugar was running........
Our family doctor had put me on long acting insulin which helped, but not enough. One of my biggest pet peeves is doctors (any kind of doctor) who won't truly listen to me. Unfortunately, in my experience, those are a very small minority.

Been there done that.....it took 5 years to change my diagnosis from Type 2 to Type 1. By that time me A1C was almost 9, and I was down to 118 lbs (I'm 5-8+). My doctor sent me to an endo, who immediately put me on 2 types of insulin and gave me both antibody tests, and I failed both miserably--or is that passing with flying colors? Now I'm on a pump(love it). Shots are no big deal--the needles we use are almost too small to see.
I would recommend Taking Control of your Diabetes, by Dr Edelman of TCOYD (and go to one of their programs if one is near you). The book will tell you everything you want to know about diabetes, and is a great reference. Also lots of new information at diatribe, and great recipes on Dlife and the magazine Diabetic Living--the pictures alone will make you hungry.

I just CANNOT understand why you are not allowed to be tested!! What does she have to gain or lose from this...while YOU have everything to gain. What has it to do with the endo anyway....this is YOUR body, YOUR decision and YOU have all the pointers indicating that the test is a valid choice. The doc says she's a 100% sure? Well...with what proof?
I feel it's time to take it up a notch....raise your voice. This all fall under the "God Syndrome" umbrella.

I am with Linda totally on this one. I wish I had a dollar for every tuD member who was told they had Type 2 and then turned out to be LADA after all. I could buy us all a nice no-carb . . . . something.

Anyway: you need a new endo. I don't care what the context is! A doctor who watches a patient's condition steadily worsen and says they know exactly "100%" what's wrong without doing the relevant tests is a doctor who is not doctoring.

As others have said, you are the one with skin in the game here -- no one else. You are doing exactly what you should be: demanding the diagnosis and the treatment that can save your life. Don't be deflected or diverted and don't take no for an answer. It's your health, not theirs.

P.S. And as important as it is to have the correct diagnosis, there's something infinitely more important. The bottom line here is not what pigeonhole you fit into or what label is attached to you. At the end of the day, what matters is having stable blood sugars. Whatever it takes to do that is what it takes. Insulin, pills, diet, whatever. That goal is what matters. Eyes on the prize!

- David

RSS

Advertisement



REsources

From the Diabetes Hands Foundation blog...

DHF Partners with HelpAround in an Effort to Connect People Touched by Diabetes

  Leer en español Technology has the amazing ability to ease the stress associated with diabetes; It simply makes our lives a little more bearable. That’s why we are excited to announce DHFs partnership with HelpAround. This new application will help Read on! →

La Diabetes Hands Foundation y HelpAround uniendo las personas tocadas por la diabetes

  Para nuestra comunidad de diabetes la tecnología ha venido a llenar muchos vacíos y a hacer de nuestras vidas un poco mas llevaderas. Eso mismo nos proporciona una nueva aplicación de geo-localización llamada HelpAround (Ayuda a tu alrededor). HA Read on! →

Diabetes Hands Foundation Team

DHF TEAM

Manny Hernandez
(Co-Founder, Editor, has LADA)

Emily Coles
(Head of Communities, has type 1)

Mila Ferrer
(EsTuDiabetes Community Manager, mother of a child with type 1)

Mike Lawson
(Head of Experience, has type 1)

Corinna Cornejo
(Development Manager, has type 2)

Desiree Johnson  (Administrative and Programs Assistant, has type 1)


DHF VOLUNTEERS


Lead Administrator

Bradford (has type 1)


Administrators

Lorraine (mother of type 1)
Marie B (has type 1)

Brian (bsc) (has type 2)

Gary (has type 2)

David (dns) (type 2)

 

LIKE us on Facebook

Spread the word

Loading…

This website is certified by Health On the Net Foundation. Click to verify. This site complies with the HONcode standard for trustworthy health information: verify here.

© 2014   A community of people touched by diabetes, run by the Diabetes Hands Foundation.

Badges  |  Contact Us  |  Terms of Service