Need advice

[Astatinx85]

Hi I'm a newly diagnosed type 1 diabetic. I was firstly misdiagnosed as type 2.Thing is I have anorexia and was 38kg(height 160cm) so I could not accept the diagnosis for a long time. I was put on meds(metformin at first then and glicazide was added) helped for a while - a few months and then my blood sugar levels went haywire.I went back to the doctors early because my blood sugar level was (15-20) they upped my doses on both metformin and glicazide -max dose but my levels stayed the same I went back a few times but I was already on the max doses for both so they blamed my diet. There was so much blame. They decided to check my hba1c and it was 6.1 so a genius doctor told me the glucometer readings were not reliable and decided to lower my meds doses, I went back the final time as my blood sugar was so high my glucometer couldn't even give a reading. This time was different because as soon as the nurse checked my blood sugar she sent me to get tested for ketones. It was 2++ she sent me to the Er straight away and was treated for Dka. They put me on the drip and gave me insulin then sent me home. Went back the day after to get checked for ketones and I was good. Finally a doctor decided to refer me to an endo and the endo told me I had lada and tested me for auto antibodies and c peptide. C peptide was low and tested positive for 2/3 antibodies. Ngl a huge part of me was happy because everyone blamed me for the supposed type 2 diabetes. I know I should not be happy with a type 1 diagnosis but it was a relief being told it wasn't my fault. Until now I struggle part of me thinks when they retest antibodies or c peptide and it isn't in the range anymore for type 1 they would immediately change my diagnosis back to type 2 so I inject insulin a lot less or not at all because in my head I'm still a type 2 diabetic and I don't need insulin. I don't know how to change this mindset and I'm constantly asking all this stuff on chatgpt as if it gives me a peace of mind but it doesn't. So I live in a constant state of worry of them changing my diagnosis again. Before anyone says anything I know I shouldn't not be relieved at a permanent diagnosis but all that blame(from doctors, friends, family) it broke me. My anorexia had labelled me a failure as I spent 10+ years depriving my body of food just to be diagnosed a type 2 diabetic so forgive me. I don't know what I want but I know I need help.

 

[Melgar]

Hi and welcome to the forum @Astatinx85 . Firstly this is a great place for community support . We have members who are newly diagnosed T1's having initially been diagnosed T2. So members will be able to relate to your concerns.
A T1 diagnosis is usually given when you have 2 or more autoantibodies which the body produces by the immune system against beta cells, along with depleting C-Peptides. Once your body is producing 2 or more types of autoantibodies (they found 3 types of autoantibodies for you) it is inevitable you will go on to develop T1. So your body is producing 3 type. There are 5 types if autoantibodies, but there are 4 common ones. This has already happened in your case. T1 cannot be reversed. Your body will not stop being T1 and revert back to T2 diabetes. They are different diseases with different causes, although high blood sugars are a common feature to both. T1 is an autoimmune disease T2 is not. T1 in adults after the age of 30 years is known as Latent Autoimmune Diabetes in Adults or LADA. It is T1. In anyone younger than 30 it is diagnosed as T1. LADA just has a slower onset.

Just a quick mention about T2 diabetes. T2 diabetes is not anyones fault. It is a disease of the metabolism. It has nothing to do with lifestyle. You do not cause T2. T2 is only a symptom. Ignore the nonsense you read in the media.

I'm going to include a link. You may find it interesting. I will just have to find it.

I am sure there will be T 1 members who are more than willing to answer any questions you may have and offer support . Welcome to the forum .


Edited to includes links

The first link is the basics surrounding the development if T1 and the second us a mire in depth look at T1

https://www.trialnet.org/events-new...taging-classification-opens-door-intervention

https://pmc.ncbi.nlm.nih.gov/articles/PMC5491594/

 

[Pipp]

Hello, and welcome @Astatinx85
@Melgar has already given some excellent advice.
I am tagging @Antje77, who also has LADA, and will probably be able to offer some insights , from her own experience. There will be other members too.

We would advise , very much , against seeking information from chatbot sources. We don’t allow AI generated content on the forum boards, because it is difficult to verify the authenticity. Much better to have info from reliable sources, or the personal experience of our members.

Also, we can’t advise on changing doses of prescribed medication, so best to stick with the advice of your Health Professionals.

Diabetes occurs in many types beyond type 1 diabetes and type 2 diabetes. One of these is Latent Autoimmune Diabetes of Adulthood (LADA). Some patients receive the diagnosis of type 2 diabetic, despite not exhibiting all the classic symptoms associat

Diabetes occurs in many types beyond type 1 diabetes and type 2 diabetes. One of these is Latent Autoimmune Diabetes of Adulthood (LADA).

www.diabetes.co.uk

 

[Melgar]

Just a quick follow up post for you @Astatinx85 . You may also find this link very useful on LADA https://www.diabetes.co.uk/diabetes_lada.html

I should also mention a couple of other things you have mentioned in your post. Using AI for any medical information or advice is definitely not recommended . AI often gives misleading information, especially on anything medical related. It can be misleading and very dangerous. We highly recommend you listen to your healthcare team especially on dosage . I am going to tag a knowledgeable member who lives with LADA. @Antje77 .

 

[Antje77]

Thanks for the tags @Pipp and @Melgar .

And welcome to the forum, @Astatinx85 .

First, your fear of your diagnosis being changed back to T2 again: Not going to happen.
You have the perfect labwork to prove you have autoimmune diabetes with the low insulin production and the antibodies.
Plus you ended up in DKA, much more common in T1 than in T2.
Plus you don't fit the statistical T2 profile at all because of your age and weight, but you do fit the T1 profile perfectly being young and thin.

Some doctors must have been blind to not suspect T1 the first time you presented with raised blood glucose, guidelines say T1 should be suspected with your overall profile, and definitely so when oral meds didn't do the job.

The blame you received was just plain wrong, no matter the type of diabetes you had.
Worse, they tried to blame your diet while knowing you had a pre-existing eating disorder. Have they never read a textbook on how to not deal with patients with an eating disorder?
It won't help you for me to be angry with your HCPs on your behalf so I'll stop it now, let's focus on managing your condition.

Before anyone says anything I know I shouldn't not be relieved at a permanent diagnosis but all that blame(from doctors, friends, family) it broke me.

I can completely understand you're very relieved that your not T2 after all that! Please don't apologise!

I inject insulin a lot less or not at all because in my head I'm still a type 2 diabetic and I don't need insulin. I don't know how to change this mindset

I think this is the first thing you should work on.
Your labwork proves you are T1 and produce very little insulin. The amount of insulin you produce may vary a bit in the first few years, it's normal for your insulin needs to fluctuate at the beginning. This is not a sign that you are not T1.

Non T1's produce the insulin they need, T1's don't. So we inject what our bodies would have produced otherwise as best as we can.
The only way to work out how much insulin we need is by using our meters or CGM (continuous glucose monitor). If you're going higher than you like, you've not taken as much insulin as you body would have produced if you weren't T1, and by finding patterns you can improve your dosing.
Do you use a CGM yet? It's a very useful tool to help you see that you do need the insulin, and I'd push for one if you're not on it already.

A bit more on myself, as I've been tagged by two different people because they thought my experience was relevant. We have some similarities but more differences I think, and I was a lot more lucky with my doctors than you were.
I was diagnosed with T2 at 39, almost 9 years ago. With my age and BMI of around 35 I definitely fit the T2 profile, but no-one (except for one ignorant aunt) has ever blamed me for my diabetes.
After a month on gliclazide and dietary adjustments I asked for insulin because it simply didn't do the trick. Insulin did, and I was pretty happy on it, still being labeled a T2 but having my doubts.
It wasn't until 2 years later that I asked for a referral to have my anti GAD and C-peptide tested because I wanted to be listed as a T1 if I was one. Low C-peptide cut the deal, even though my anti GAD was negative. My endo offered to test for the other antibodies but she was happy to rediagnose me on my history of needing insulin this quickly and my low C-peptide so I declined further testing.
My treatment didn't change, it had already been working well for two years.

So a similar story on diagnosis from T2 to T1, but a rather happy and supported experience for me, and a very lonely and unhappy one for you.
Nine years on, and I still don't mind diabetes much. I try to keep my numbers as normal as I can with my insulin and just go on with my life.

Are you seeing someone for your anorexia?
The combination of T1 and an eating disorder isn't easy, because to get in remission for your anorexia you'll need to try to stop focusing on how much you eat and what the exact nutritional values are in what you eat. But to get insulin dosing right you'll need to learn to adjust your doses to the amount of carbs in your food, and making those calculations are exactly the thing you're trying to avoid with anorexia.
I can imagine you could use some professional support on that front.
I'm tagging @AndBreathe , who has experience with both diabetes and an eating disorder, but she hasn't been around much lately so not sure if she'll reply.

And like the people before me, I want to stress to not use chatgpt as a source for medical information!
There is a lot of good information to be found on the internet, but theres loads of rubbish as well, and chatgpt feeds from both. Don't trust it.

You might like to have a read of this: https://www.diabetes.co.uk/forum/threads/5-things-any-newly-diagnosed-type-1-should-know.175425/