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Diabetes and Genetic Tests

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CatarinaMartins

New Member
Relationship to Diabetes
Type 1
Good afternoon everyone!

Hope you are all well and keeping safe.

I have recently registered with a new GP and when explaining my diabetes history, diagnosed 10 years ago when I was 17, the doctor asked if I ever had genetic tests done.

I was wondering if any of you had them done and if they were helpful in any way?

Thank you!
Catarina
 
Genetic tests to find out what? - there's no history of diabetes in my family other than me.
 
Hi @CatarinaMartins, welcome to the forum.

I was considered for genetic testing closer to my initial diagnosis, as the consultant team was unsure if I was T1D or another rarer genetic subtype of diabetes. Even though I work in a hospital laboratory and often receive samples for certain genetic tests relating to diabetes, I didn't realise there were quite a lot of them and many I'd never heard of.

I found the following link quite helpful for explaining the different sub-types. Exeter is regarded as the main lab in the UK for processing any specialist genetic tests for diabetes.


In regards to yourself, are you or your GP concerned you may fall into one of these sub-types, or just curious to find out more info?

I hope this helps 🙂
 
Inka said:
Hi @CatarinaMartins 🙂 Do you mean tests for MODY/monogenic diabetes?

I was investigated for that recently but found to be Type 1 (which is what I’ve always been treated as).
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Hi @Inka yes. I dont know much about it but I'm curious since I was a very healthy teenager and no one in my family has diabetes. But I'm not sure if my GP and diabetes team will be willing to investigate further.
 
danielmg said:
Hi @CatarinaMartins, welcome to the forum.

I was considered for genetic testing closer to my initial diagnosis, as the consultant team was unsure if I was T1D or another rarer genetic subtype of diabetes. Even though I work in a hospital laboratory and often receive samples for certain genetic tests relating to diabetes, I didn't realise there were quite a lot of them and many I'd never heard of.

I found the following link quite helpful for explaining the different sub-types. Exeter is regarded as the main lab in the UK for processing any specialist genetic tests for diabetes.


In regards to yourself, are you or your GP concerned you may fall into one of these sub-types, or just curious to find out more info?

I hope this helps 🙂
Click to expand...
Hi @danielmg honestly is mostly curiosity since from what I understand, the age I was diagnosed doesn't seem very common for Type1 but maybe it really is.

I will read through all the information and hopefully find some answers.

My treatment is working for me but I would definitely like to know more and have more information.

Thank you for your help.
Catarina
 
CatarinaMartins said:
Hi @Inka yes. I dont know much about it but I'm curious since I was a very healthy teenager and no one in my family has diabetes. But I'm not sure if my GP and diabetes team will be willing to investigate further.
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Most people diagnosed with Type 1 don’t have anyone else in the family with it - that’s normal 🙂 I think the figure is 90% of people diagnosed with Type 1 do not have a close relative with Type 1. So you’re perfectly normal in not having anyone close with Type 1.

The genetic forms of Type 1 are connected to genes (obviously!) so would usually mean having relatives with a similar diabetes.

You can get Type 1 at any age - as a 2yr old, a 10yr old, a 17yr old, 25yr old, 47yr old........you get the idea :D
 
I was 22 married 12 months and living in our own home when I was diagnosed Type 1. I don't recall seeing my old GP at all since I'd had a keratosis under my armpit removed when I was 12. Before that, the last time had been to have my polio jabs when I was little.

A Type 1 lady on this forum - her 16 yo daughter was diagnosed T1 last year.

Nothing whatever unusual about this happening aged 17 with no family history!

T1 diabetes is very often thought to be instigated by the patient having had a viral infection previously - mine could have been either the gastric one I'd had that February, c, 6 months prior to diagnosis, or perhaps the awful throat I had the week before our wedding 18 months before.

Certainly this was discussed about me in 1972 - so it has not surprised me, or any number of us on this forum, that quite a few have become T1 as a side effect of having Covid. But it seems to have taken a lot of the medical profession by surprise. You see - they pooh pooh these old theories as there isn't precise written down proof in the medical annals, so presumably they've deleted them as being old wives tales. Well, I am an old wife by now - but I didn't ruddy well invent the theory!
 
There seem to be a handful of hotspots in childhood for T1 diagnoses. I can’t quite remember, but I think 13 might have been one, and 5-6 another.

Having said that 50% of cases are diagnosed in adulthood, and we often have members in their 50s, 60s and even older who arrive on the forum with a new diagnosis... so I don’t think 17 is all that unusual 🙂
 
I got to the ripe old age of 52 before I had a DKA then the blood tests that confirmed I was type 1 . I’m adopted so we have limited information but I believe my natural grandfather was diagnosed with type 1 when he was in his 50 s
 
Freddie1966 said:
I got to the ripe old age of 52 before I had a DKA then the blood tests that confirmed I was type 1 . I’m adopted so we have limited information but I believe my natural grandfather was diagnosed with type 1 when he was in his 50 s
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That's very interesting @Freddie1966. Thank you for sharing 🙂
 
I have had genetics test along with my family. I was born with it in 1976, it then went when I was 3.5yrs old. I got diagnosed with it again aged 14. As part of a study we all got tested and I was found to have Transneonatal Diabetes (TND) due to a faulty 6q24 chromosome , this was from my father. There is no known history in the family. The study believed there was around 150 known cases worldwide with about a 50/50 chance of it coming back.
 
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