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So confused- Type 1 or what?

T

TypeZero.

Well-Known Member
P.S: I know this forum is not for medical advice but I’m not asking for medical advice

I am 18 and have been diagnosed recently with diagnosed with type 1 diabetes. I’ve been losing weight for about a year or more from an initial weight of 83kg to 54kg gradually losing it. I wasn’t feeling that bad and wouldn’t have called my GP if I hadn’t been prompted by my mother. Diagnostic tests showed HbA1c of 134 and fasting blood glucose of 19.4 mmol/L.

Admitted into hospital and put on insulin. My current weight is 56kg so I gained 2kg back in 3 months. I’ve been reading more about type 1 diabetes and my symptoms don’t seem to be matching what’s described. Type 1 happens within weeks and those affected seem to lose between 5-10kg in 1-2 weeks but I didn’t lose weight that dramatically which is why it went unnoticed. After initiating insulin therapy people usually put on a lot of weight due to rehydration and the storage of glucose in their liver, muscles and fat in fat cells but I didn’t experience this either. About 2 years ago my weight went down dramatically (-10kg) within 6-10 months then I gained a significant portion of it back (+7kg) then it went down after that. Just to let you know I didn’t do crazy diets or exercise. I was a mostly sedentary person eating the usual amount of food (even if I did crazy diets I don’t think I would’ve lost this much weight)

GAD antibodies came back positive but I’m wondering if this can be incorrect. Why don’t I have the usual symptoms and why has it taken me months to notice something is wrong with me. The only serious complaint I had was thirst especially in last 3 months before diagnosis where I would wake from bed with a mouth drier than the Sahara desert. I would urinate around 5-6 times a day which is not that bad I still go around 3-4 times.

What’s wrong with me? I’m researching the web but there are endless possibilities. If anyone has any experience on this please let me know. If you are type 1, how did your diagnosis go and what was the speed of onset?
 
As a T2 I won't offer any advice except to say that everyone is different. Some T1S will be along shortly. Welcome to the forum.
 
When I was diagnosed, i didnt really have many symptoms either. I didnt even notice i was losing weight myself and it was others pointing it out and I was saying no. I was really thirsty and going to the toilet alot but i always had a small bladder and urinated alot anyway. And it was august when I was diagnosed so it wasnt that bizarre being so thirsty as it was hot. The main thing that took me to the doctors was ulcers and lumps on my tongue, which turned out to be a symptom. My blood sugar was 37.5 fasting. And even after I was diagnosed I didnt put that much weight back on. I wouldn't worry that the symptoms you had differed from ones you have read as they are just the most common. But if you are concerned you could always go back to your gp and explain what you have said on here, they may have a reason for it.
 
These are typical Type 1 symptoms supported by with your GAD positive, your high fasting BS, your age, your weight loss within a year (or two) is still considered a rapid deterioration onto insulin.
I'm older than you but only had chronic stomach cramps rather than usual symptoms. I don't remember being thirsty. I went to the GP and had blood sugars in the 20's and a HbA1c of 11.6%. I'd had a normal HbA1c of 4.9% 3 months before. I managed to stay off insulin for 2 years by eating no carbohydrates and extreme exercise, and normalised my HbA1c to 5.7%. In the end, after 2 years, I'd lost too much weight, had high blood sugars and blood ketones, was GAD positive, and accepted I needed insulin.
I'm with you - It's not the easiest diagnosis to accept. I still dreamt that they made some sort of mistake with me, but I've accepted that isn't the case more recently. It takes time. Allow yourself the time to come to terms with it.
 
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Your symptoms sound similar to mine on diagnosis. I thought the weight loss was a good thing and i was drinking a lot because the weather was warm. Blurry eyesight got me to the doctors and hba1c was 147

Weight went back on over 3 years.

Sadly you do sound like you have T1d. You might find your pancreas is still producing some insulin which is helping.
 
Hi. One important thing about T1 is the honeymoon period which can last for widely varying amounts of time. From what you say, age etc you are very likely to be T1. You may want to ask the GP for a C-Peptide test which will show roughly how much insulin you are producing. I assume you are on Basal/Bolus insulin? The positive GAD virtually proves you are T1 but it may be early stages. My LADA (T1) at age 50 believed to be caused by a virus has had a honeymoon period of around 7 years but a younger person would typically have a much shorter period.
 

Yeah I’m still waiting on my C-peptide, it’s been more than 6 weeks since they took my blood and it’s taking ages. I message my doctor weekly to ask about it. I’m on Lantus and NovoRapid.
 

Hi,

Some of the stuff you mention building up to my diagnosis sort of correlates to me. Increasing thirst, urination rapid weight loss leading upto diagnosis. Loss of appetite but oddly Instinctively drawn to meat proteins as a choice prior to.
But I was a child approaching my 8th birthday. The GP at the time, fobbed my mum & I off..
I was rushed round a kiddy ward for a second opinion.
The Sister knew what it was. I was admitted straight away. (They could back in those days.)
Strangely, I haven't grown weight wise since I was a late teen? No matter what I ate. Though my lifestyle has never been sedentary.

I just focus on my BGs & managing the condition day to day...

I've used Lantus for a number of years. It has been proven to be a little "unstable." I am soooo many years from a "honeymoon period."
But at one point, before I discovered how the basal worked I almost thought that "they" got it wrong & my pancreas was still "putting out?"
 

I suppose I’m looking for that little bit of hope, looking for any other condition other than diabetes which I can get treatment for and return to my healthy state. My GP instantly asked me “do you think it could be diabetes?” And he asked about family history. Every single one of my mother’s aunties are type 2 some managing it with diet alone while others on insulin. At the time I had very little knowledge of type 1, I only knew about it being genetic with environmental triggers but never knew it this extensively until I became diagnosed which is why I made rather stupid comments to my GP saying “hmm I’m very young I don’t think it can be diabetes”.

Doctors ask me if I feel better, I honestly wasn’t feeling bad at all apart from the thirst which has now subsided. I don’t know what my ketones were when diagnosed but I remember checking my ketones while in hospital when I was receiving insulin therapy for about 3 days and my ketones were 3.2 so it must’ve be much higher before which amazes me to this day as I had no abdominal pain and felt quite good
 

Hi,

People get used to prolonged high levels of BG. (Like alcohol or substances?) it don't do any favours.
No one knew much about it in my family till the subject came up with a diagnosis. (Family history was questioned.)
I was thirsty & urinating faster than I could drink, lost weight & appetite.
Pretty much dying on my feet. Dopey & in a bad mood. (From memory.) I Just wanted to sleep.
Neither was I in any perceived physical pain.. Diagnosed in the summer of 76. (Look it up.) heat wave & hosepipe ban everybody was thirsty including the grass..
 

Wow you had diabetes for so long that you have seen it transform. I mean NovoRapid was approved in 2000, stuff like BG meters rarely existed before 20-30 years ago (if I’m not wrong) especially not stuff like Dexcom and Libre.

I just remember being naturally thirsty for a few years but I suppose it worsened. It’s really hard to tell when my diabetes started because for me it was very gradual
 

"Novorapid" or similar "act rapid" was about in the late 1990's when i was first offered an MDI regime..

There are a fair few of us on here. Animal insulin, pee in a test tube kit to test urine for sugar "Using the force" regarding hypos.
"Tell mummy if you feel funny." Never mind about that.
Self preservation.

The "care package " at school when i returned for a new term in September was managed by an 8 year old.

LOL, You are correct. there was very little you could recognise now..
But hey! Adapt survive, move forward with the times, using what works for you.
 
Jaylee said:
There are a fair few of us on here. Animal insulin, pee in a test tube kit to test urine for sugar "Using the force"
Click to expand...
You forgot to mention the big metal and glass contraption (that had to be cleaned with metholated spirits - I think) that was used to give injections
 
TypeZero. said:
... I just remember being naturally thirsty for a few years but I suppose it worsened. It’s really hard to tell when my diabetes started because for me it was very gradual
Click to expand...
While for most children there is a quick onset of symptoms, it takes much longer with adult onset. The actual autoimmune attack starts years earlier, but there are enough beta cells for blood glucose to remain normal for a long time. Details vary and your onset is not unusual.

Welcome to the club no one wants to join. ...
 
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