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18 year old newly diagnosed type 1

  • Thread starter Thread starter CelalDari
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CelalDari

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Firstly I just want to say this site is not for medical advice and I know that but I’m just curious.

So I’ve been losing weight for months, at first I was glad because I was slightly overweight 86kg. Then I started to lose weight at an alarming rate e.g. dropping from 75kg to 57kg (-18kg) between September 2019 and April 2020 so about 6-7 months. Only in the last few months have I realised frequent urination and that I drink a lot of water however honestly I don’t know if it’s me but I don’t think I drank that much, estimating around 3 litres a day maybe slightly more.

Told my GP and did a series of blood tests and I had a HbA1c of 134mmol/mol and a fasting blood sugar of 19.4 mmol.

However this was not the only irregular blood test result but for some reason my GP was fixated on the diabetes and ignored the other test results. Thankfully my GP actually sent me the blood test document otherwise I wouldn’t be on here concerned for myself.

My serum ferritin was significantly high at a level of 595 when the reference range for a male is between 20-340. Had to recall my GP and book another blood test 1 month after starting insulin treatment. The results haven’t come out yet.

My serum alkaline phosphatase was elevated at a value of 159 (normal reference range 0-129) while my serum albumin was elevated at a value of 54 (normal reference range 32-45). My GP putted this down to what he calls “inflammation” which is apparent “especially in type 1”. However I beg to differ, I’ve checked online for the best inflammatory blood markers which are C- reactive protein and white blood cell count both of which were in the normal range and in fact towards the lower end of the normal range for me. My creatinine was low which is understandable because of decreased muscle mass (as my body was cannibalising its muscle and fat for energy) however there’s something peculiar going on in terms of elevated ferritin, alkaline phosphatase and albumin.

Also I find it strange that I was not in DKA, my ketones were 3.2 when I was receiving insulin treatment through a drip in the hospital so I can’t imagine what it was before insulin therapy. I had no abdominal pain, I was only mildly tired and would probably not know I had diabetes if my mother hadn’t convinced me to call the GP. The NHS is frustrating me, I’ve been discharged from the hospital for over a month and haven’t seen a dietician so I would have to basically starve myself if I didn’t teach myself how to bolus and carb-count by using the internet. My C-peptide and GAD antibodies tests are taking ages which is killing me inside.

Due to my age I am being treated as a type 1 and currently using 14u of Lantus while adjusting my Novorapid to my carb intake. (I am 58kg right now so don’t know if my basal is normal) What I really want to ask people is how long did their C-peptide and GAD antibodies test results take to come back. Also is it not strange that I was losing weight for months (around 10 months if I had to guess) but I was not in DKA being rushed to hospital or anything. I’ve heard type 1 usually takes weeks to occur.

Did anyone experience these blood test results? I appreciate that some of you were diagnosed decades ago but diagnosis of type 1 diabetes is surely a hard thing to forget. My theory is that I might have a condition called haemochromatosis which causes excessive iron loading on the body thus leading to damage to organs such as the pancreas and liver which would explain my high iron levels, high alkaline phosphatase and high albumin. Very hard to tell with the very slow speed of blood tests and the careless attitude of some doctors. Please offer advice and also share anecdotes of any irregular blood tests in the diagnosis of your diabetes. In theory if I were type 1 I would’ve had a near-fatal experience with DKA if I had been surviving 10 months without insulin. It’s very unlikely for me to have type 2 unless it’s secondary diabetes caused by another condition because of my age (18) and my relatively healthy eating and occasional exercise. Type 2 usually develops due to years of building insulin resistance which is highly unlikely given the fact I have only been alive for 18 years.
 
Hi and welcome. For starters you are almost certainly T1 not T2 as you are young, have lost weight suddenly and had very high BS. Its quite unusual for your GP and you to go into such a depth of knowledge with regard to your test results. At my diagnosis of diabetes my BS must have been in the 30s and I was behaving very oddly according to my wife yet I never went into DKA. I passed enormous amounts of glucose into the loo when peeing leaving a sediment for quite a few weeks until I started reducing the carbs. So, DKA is unpredictable for many reasons. To get your Lantus balanced you can starve yourself for a good few hours and see whether your BS goes up or down - it should remain stable as the Basal's job is to balance the continuous glucose output from the liver. Also your morning BS level should be between 5 and 7 mmol.
 
Hi @CelalDari and welcome to the forum. My knowledge on types other than type 2 is limited as I am a type two but your combination of high blood sugars and abnormal iron levels reminded me of this page on this website about bronze diabetes. I’m not saying that’s what you have but the article suggests other tests you could ask for:
https://www.diabetes.co.uk/hemochromatotis-bronze-diabetes.html
 
I'm sorry you've had a tough time of it and need some medical answers, which your waiting tests will go some way to providing. In the meantime, DKA occurs when you don't have enough insulin to clear away high levels of blood acids called ketones. Chances are you still had enough insulin to step your blood pH from changing (DKA), even after an autoimmune response that took away the majority of your islet cell function which gave you the elevated blood sugars, though not entirely. Your c-peptide result (together with your fasting glucose) will support or reject this notion. The elephant in the room is type 1 diabetes, but if they manage to disprove this, then they will follow other systems towards a different diagnosis as you have suggested. I hope you get some answers soon.
 
Hi, Hope you get your test results soon. I can only imagine the current situation will be partly to blame for the delayed results.

I am not aware of the possible other condition you mentioned, but wonder whether in part the fixation on type 1 was to rule this out first as it could deteriorate faster than the other condition?

I don't remember how long tests took to come back, but was admitted to hospital on diagnosis following a blood glucose test and urine tests (I think for glucose and ketones). I had DKA and by this stage and couldn't walk and had difficulty breathing. They suspected I'd had diabetes for at least 11 months. At first I would have still been producing some insulin. So don't think that is 11 months of no insulin, my understanding is that it was a gradual decline. I also did lots of exercise so didn't notice how much I was drinking, and I remember always being hungry and eating loads, so also didn't actually lose weight.

I hope you get answers soon!
 
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