Eye specialist thinks you are born with T1D

TypeZero.

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Is it me going crazy or something?

Came to the eye clinic and I’m telling her I was diagnosed April 2019 and she’s giving me weird stares saying “type 1s are usually born with it”. She thinks I’m wrong because I’m 19 and diagnosed 6 months ago.

I have to explain her that I am born with a genetic predisposition but not the disease. I’m yet to hear a case where a baby is born and as soon as it is conceived they have T1D
 

ert

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It's worrying how little knowledge medical professionals can have about diabetes.
 
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Grant_Vicat

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Is it me going crazy or something?

Came to the eye clinic and I’m telling her I was diagnosed April 2019 and she’s giving me weird stares saying “type 1s are usually born with it”. She thinks I’m wrong because I’m 19 and diagnosed 6 months ago.

I have to explain her that I am born with a genetic predisposition but not the disease. I’m yet to hear a case where a baby is born and as soon as it is conceived they have T1D
You're not going crazy! It would result in stillbirth.
 
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KK123

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Is it me going crazy or something?

Came to the eye clinic and I’m telling her I was diagnosed April 2019 and she’s giving me weird stares saying “type 1s are usually born with it”. She thinks I’m wrong because I’m 19 and diagnosed 6 months ago.

I have to explain her that I am born with a genetic predisposition but not the disease. I’m yet to hear a case where a baby is born and as soon as it is conceived they have T1D

Tell her she clearly doesn't know what she's on about (but not until she's finished with your eyes!). x
 

NicoleC1971

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Is it me going crazy or something?

Came to the eye clinic and I’m telling her I was diagnosed April 2019 and she’s giving me weird stares saying “type 1s are usually born with it”. She thinks I’m wrong because I’m 19 and diagnosed 6 months ago.

I have to explain her that I am born with a genetic predisposition but not the disease. I’m yet to hear a case where a baby is born and as soon as it is conceived they have T1D
I think she is referring to a recent bit of research re babies developing type 1 in the womb and then being misdiagnosed with MODY (genetic problem with insulin sensors rather than the more usual autoimmune condition).
https://www.expressandstar.com/news...can-develop-in-babies-under-six-months-study/
 
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TimberYardBen

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I was 18 when diagnosed with T1. No family history or previous conditions. I've just joined here to try and get a hold of my diabetes as I've struggled for many years, mainly attributed to my fear of medical procedures/needles (Ironically) but also have come across some insanely bad information and/or attitudes by so called medical professionals!
 
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DCUKMod

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Is it me going crazy or something?

Came to the eye clinic and I’m telling her I was diagnosed April 2019 and she’s giving me weird stares saying “type 1s are usually born with it”. She thinks I’m wrong because I’m 19 and diagnosed 6 months ago.

I have to explain her that I am born with a genetic predisposition but not the disease. I’m yet to hear a case where a baby is born and as soon as it is conceived they have T1D

My take on this would be, "that'll be why she does eyes".
 

LooperCat

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I do have a friend who was born with T1. His identical twin also had it and died soon after birth - it was how they thought to look for it in my friend, and only just saved him.
 
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Jaylee

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Is it me going crazy or something?

Came to the eye clinic and I’m telling her I was diagnosed April 2019 and she’s giving me weird stares saying “type 1s are usually born with it”. She thinks I’m wrong because I’m 19 and diagnosed 6 months ago.

I have to explain her that I am born with a genetic predisposition but not the disease. I’m yet to hear a case where a baby is born and as soon as it is conceived they have T1D

Hi TZ,

Yep, I've had it. But not from HCPs... "Oh, you must have been born with it." Or "had it as a baby."

In one respect, they are sort of right.. My "diaversary" is my "day" of birth..
 
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DCUKMod

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Yes, but as an eye doctor doing diabetic eye tests she should see a lot of T1s.... Maybe she was newly trained....?
From my understanding, @TypeZero. was attending for something possibly not related to his diabetes.

One would usually think they'd have a decent clue, but my remark was semi-lighthearted.
 
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Jaylee

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Yes, but as an eye doctor doing diabetic eye tests she should see a lot of T1s.... Maybe she was newly trained....?

In my experience, I'm usually in the waiting area with a fair few other types too.. occasionally we get chatting.

Correct me if I'm wrong @TypeZero. . Haven't you mentioned having eye issues prior to being DXed?
 
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TypeZero.

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296
In my experience, I'm usually in the waiting area with a fair few other types too.. occasionally we get chatting.

Correct me if I'm wrong @TypeZero. . Haven't you mentioned having eye issues prior to being DXed?

Cataract removal from left eye at age 4, when I told the woman this she was like “woooooowwww oh wow that’s sooo young”

Lazy eye and poor visual acuity after cataract removal. This was all years before my diabetes diagnosis.

August diabetic eye screening revealed “haemorrhage within macula” in left eye (where I had pre-existing eye condition mentioned above) but the images weren’t that clear because the eye specialist didn’t use the drops.

Just been today and another specialist says she can’t see any haemorrhage and that if someone else saw it before then it probably just healed on its own
 

Jaylee

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Type of diabetes
Type 1
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Cataract removal from left eye at age 4, when I told the woman this she was like “woooooowwww oh wow that’s sooo young”

Lazy eye and poor visual acuity after cataract removal. This was all years before my diabetes diagnosis.

August diabetic eye screening revealed “haemorrhage within macula” in left eye (where I had pre-existing eye condition mentioned above) but the images weren’t that clear because the eye specialist didn’t use the drops.

Just been today and another specialist says she can’t see any haemorrhage and that if someone else saw it before then it probably just healed on its own

TZ, this maybe account you gave where it all got confused with the diabetes.. Not your fault. Possibly C19 overload with the ophthalmologist??

Don't worry, according to my recent GP surgery. I was diagnosed in 1995. The same year I met my wife..

Yep, go figure. I didn't register there till 2012??
I was actually diagnosed in 1976. But by a sister on a kiddie ward, (& admitted immediately.) not our GP.. (She was a "second opinion." After being rushed elsewhere like the "Sweeny." ) Our family GP at the time reckoned there was nothing untoward with a 7/8 year old under weight & dropping off his feet with DKA.

No doubt you will experience further "carry ons," as time goes on... It's how it rolls.. (My account of it anyway..)
Some folk can be a little "flat Earth."

Traveling through India I called a doc out when my wife & I caught serious bad guts.. (I was seriously concerned for my wife.) sick day rules.. I was on it. Doc did ask, "& what is wrong with you...?" On hearing I was T1. The Doc said "ohhhhh, you are so young...." I was 28 at the time...? This stuff happens... "Protect & survive." ;) Deal with the "here & where you are now.."
To be fair to her, the Doc was great. We were able to travel onwards, though a little "tender."
Personally, I don't do "sympathy" in my direction. But sometimes the positive results from an HCP is all that counts.
 
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DCUKMod

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14,298
Type of diabetes
I reversed my Type 2
Treatment type
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Cataract removal from left eye at age 4, when I told the woman this she was like “woooooowwww oh wow that’s sooo young”

Lazy eye and poor visual acuity after cataract removal. This was all years before my diabetes diagnosis.

August diabetic eye screening revealed “haemorrhage within macula” in left eye (where I had pre-existing eye condition mentioned above) but the images weren’t that clear because the eye specialist didn’t use the drops.

Just been today and another specialist says she can’t see any haemorrhage and that if someone else saw it before then it probably just healed on its own

TypeZero, a coupe of years ago now, after, 4 or so in remission, after only one A1c in diagnostic range, I had a screening result stating changes in one eye. Well, I was straight onto my ego driven high horse, with all the "Hoe could that happen to me?" twaddle.

I contacted the clinic and asked for a copy of the letter sent to my GP, which contains more information on what is actually seen - stage of any change, how many areas of change, etc, although still in a coded, high summary level. That indicated one single spot in one eye, but still not satisfied, I called my friend whose husband just happens to be a consultant opthalmologist, specialising in eye disease.

Needless to say we had a "nice little chat" he hadn't been expecting with his Friday night glass of wine!

After a certain amount of interrogation (him on me, and bearing in mind he had not seen any of my imaging) his advice to me at the time was firstly, not to panic. Secondly, that not everything was diabetes related. Thirdly, most changes are transient (in normies) and that normies can have retinopathy, bleeds oedema and most of the other eye conditions those living with diabetes experience. He commented when doing this imaging, there is no way of knowing if any changes or bleeds are recent or healing, so it could be a fluke of time that anything was noticed. He considered, based purely on what I had told him, that any changes in my eye were unlikely to be serious or too strongly linked to my T2.

He enquired who my usual optician is (we happened to use the same guy), and suggested I go see him for a sight test, where they do the same photography as the screening service. He reckons the guy we use is good. He also warned me there was a decent chance he'd find nothing.

I did that, but I didn't tell the optician up-front of my concerns, I only did that onec we'd been through the hoops. Based on my comment, he insisted on rerunning the imaging and brought another colleague into the room to go through them together, in front of me; concluding there was nothing to see.

So, I have taken a lot from that sobering lesson myself. The takeaways were, where this is unexpected, and where control has been good:

- If it happens again, don't panic
- Acquire the GP letter and images, if I could, although the latter requires more hoop-jumping
- If concerned, seek a second opinion
- Keep blood sugar control in a good place, where possible
- Get on with life. In many cases with minor changes, the old adage of time being a healer is extremely pertinent.

I know I got lucky having a friend in the position he is, hence I'll share what I learned. I'm hoping he and I don't need to have any other "little chats".


I did that
 
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Daibell

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12,642
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LADA
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Insulin
When I challenged my diabetes GP that I was T1 at age 60 and not T2 and I told her my 22yr old nephew became T1 with DKA at age 22 she said that was 'unusual' which said all to me; she was ignorant on the subject. There is growing evidence that viruses can attack the pancreas as well as other organs (e.g. Covid-19) and the damaged beta cells are no different from those damaged thru antibody attack. The medical profession is very slow to accept new ideas as Malcolm Kendrick shows in one of his books.