Could it be T1?

[BMXBOY2003]

Hi, I am a parent of a 14 year old Son, when my Son was 9 he came down with strep throat, then a few days later he developed Scarlett fever.
It was about 2 months later that he showed some signs of type 1 diabetes, increased thirst, frequent toilet breaks and lethargic.
At this time I worked in a school, some of the pupils were diabetic so I had a good idea of the symptoms, one day I borrowed the schools blood glucose meter and tested my Sons sugar levels, thinking I was being overally dramatic, the first test read 34.5...very high by anyone's standards, before panicking, I got him to wash both hands and dry with kitchen towel, thinking he may have had something on his skin.
This time the result read 32.8... now I was a little concerned, at this time my Son did not feel unwell, just thirsty, so we waited a couple of hours and retested, 36.0.
I took my Son to our GP who also tested his levels his meter read 38.1, so it was off to A&E.
Luckily we didn't have to wait around, we got seen immediately, after several blood tests my Son was allowed home as there was no coagulation in his blood.
We were referred to a diabetic nurse who contacted me the following day and asked us to keep a diary over the next three months, during this time my Son developed a raging water infection, his eczema flared up and he continued to have elevated sugar levels, but they went down on their own after a couple of hours, he also experienced several hypos, with his lowest reading dropping to 2.4
Again his levels returned to normal without any intervention, apart from the hypos where he did require help to bring his levels back up, I didn't want to leave it as I wasn't certain that the levels would return to normal on their own, this continued for around 6 months, then out of the blue it all stopped, normal sugar levels, no hypos or hypers.
I continued to monitor his levels for the next month but stopped as there was nothing abnormal anymore.
He was 9 years old then, now he is 14 and has been having some more symptoms, increased thirst, rapid heart rate.. on several occasions, lethargic, mood swings (that may be due to his age) feeling unwell and loss of appetite, then he bounces back and goes on as normal, every now and then I will check his levels and sometimes they are elevated, but not too much, the last time was 11.5, not too high but taking into account his past history it does make me worry, is there a chance he could be slowly developing type 1?
He has been back to the hospital, but as there is nothing serious going on yet they are unable to make a diagnosis or do anything for him.
Am I being too dramatic or could this be type 1 in the making?

VH.

 

[Northerner]

Hi, welcome to the forum 🙂 This certainly does sound like a strange set of circumstances. Has he ever had an HbA1c test done, which would measure his blood's exposure to glucose over a period of 6-12 weeks prior to the test? It sounds like there is some kind of problem with his insulin/glucagon production, in that it doesn't appear to be reacting as it should in order to keep his levels in the narrow region normally experienced by people without any health issues (between about 3.3-6.0, fasting). When are the high levels occurring in relation to when food has been eaten, and what food has been consumed? In Type 2 diabetes there is often a slow 'first response' from the pancreas when levels start to rise after eating, and this can lead to quite high levels that may then return to normal, although not usually in the 30s. Sometimes also the 'late arrival' of insulin, or overproduction can result in a low blood sugar/hypo - something known as reactive hypoglycaemia.

I'm not a doctor though, just relating things I have picked up over the years. I do know that diabetes isn't always 'textbook', and there are some very rare manifestations. Type 1 in childhood normally develops more quickly in childhood than in adults, but it is possible that he is experiencing a slow-onset. I'd suggest he starts a food diary, being totally honest about the amount of carbs in things he is eating and drinking, and recording blood tests before and after eating. You might feel it is worth investing in a Freestyle Libre system, which would provide continuous information about his blood sugar levels over a 14 day period (per sensor) - you may be able to persuade his GP to prescribe this, even if just for a trial period, so you can get a better picture of what might be going on.

 

[BMXBOY2003]

Hi, welcome to the forum 🙂 This certainly does sound like a strange set of circumstances. Has he ever had an HbA1c test done, which would measure his blood's exposure to glucose over a period of 6-12 weeks prior to the test? It sounds like there is some kind of problem with his insulin/glucagon production, in that it doesn't appear to be reacting as it should in order to keep his levels in the narrow region normally experienced by people without any health issues (between about 3.3-6.0, fasting). When are the high levels occurring in relation to when food has been eaten, and what food has been consumed? In Type 2 diabetes there is often a slow 'first response' from the pancreas when levels start to rise after eating, and this can lead to quite high levels that may then return to normal, although not usually in the 30s. Sometimes also the 'late arrival' of insulin, or overproduction can result in a low blood sugar/hypo - something known as reactive hypoglycaemia.

I'm not a doctor though, just relating things I have picked up over the years. I do know that diabetes isn't always 'textbook', and there are some very rare manifestations. Type 1 in childhood normally develops more quickly in childhood than in adults, but it is possible that he is experiencing a slow-onset. I'd suggest he starts a food diary, being totally honest about the amount of carbs in things he is eating and drinking, and recording blood tests before and after eating. You might feel it is worth investing in a Freestyle Libre system, which would provide continuous information about his blood sugar levels over a 14 day period (per sensor) - you may be able to persuade his GP to prescribe this, even if just for a trial period, so you can get a better picture of what might be going on.

Hi, thanks for the help, my Son has had a HbA1c test done, when we attended A&E, they tested for coagulation of the blood, however it was negative.
I will ask the GP for a meter, or I will purchase one, I will get him to monitor his levels in a diary and see what unfolds, however he can go for months with no signs or symptoms then drop for a while. Hopefully he won't go on to develop T1 but if he should we will deal with it calmly as we have both had time to think about the worst case scenario.

Thank you

VH