Misdiagnosed as Type 1 LADA when a type 2

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Cass7

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My partner was diagnosed as a type 1LADA (or 1.5 as it is sometimes known) 13 years ago. He seemed to develop an allergy to insulin. Huge thickened weeping lumps at injection sites etc. Unable to stabilise sugars. Experienced 1,000’s of sugar CRASHES (as low as 0.8). Seesawing between high and low. We asked several times to try tablets but doctors laughed!

Stopped taking insulin when ill - felt a lot better. Went to endo.

Said he is type 2 gave him Jardiance and glic - his bloods have been rock solid only varying between 5.8 and 6.2. ever since.
Anyone else had a similar experience?
He is feeling very angry. Because he is suffering all the symptoms that you would expect from 10 years of uncontrolled diabetes. He is a physical and emotional wreck.
 
Cass7 said:
My partner was diagnosed as a type 1LADA (or 1.5 as it is sometimes known) 13 years ago. He seemed to develop an allergy to insulin. Huge thickened weeping lumps at injection sites etc. Unable to stabilise sugars. Experienced 1,000’s of sugar CRASHES (as low as 0.8). Seesawing between high and low. We asked several times to try tablets but doctors laughed!

Stopped taking insulin when ill - felt a lot better. Went to endo.

Said he is type 2 gave him Jardiance and glic - his bloods have been rock solid only varying between 5.8 and 6.2. ever since.
Anyone else had a similar experience?
He is feeling very angry. Because he is suffering all the symptoms that you would expect from 10 years of uncontrolled diabetes. He is a physical and emotional wreck.
Click to expand...
My brother in law's best friend, having lost everything, job, family, house, friends, whilst struggling for decades to survive on insulin after diagnosed as type 1 was contacted by a new consultant to be told to stop insulin as he was incorrectly diagnosed.
I can't help with a way to cope - some years ago now the man turned up at my sister's home and spent all day talking to her husband, then he just walked away and has not been in contact since.
Just wanted to let you know that it is not unheard of for such things to happen and for patients struggling to cope to be laughed at for their concerns.
 
Thank you for taking the time to share that. I appreciate it. It’s so hard to find information on this.
I wonder what happened to him? Hope he’s ok.
My partner at one point was planning to do away with himself. He couldn’t cope with the pain. Went to his doctor and told him ‘I can’t live like this I just want to die’. Doctor said ‘what do you want me to do about that?’ And ‘well you won’t need yr endocrinologist appointment then’ - and cancelled it, with a flourish, right in front of him.
Perhaps that poor guy had had enough too?

If only one doctor had LISTENED.
 
The first diagnosis recorded at the hospital was written like this “?Type 2”. The 2nd was’I think he will develop insulin dependence as a type1 LADA’.
That was the diagnosis that followed him from doctor to doctor to specialist etc etc.
He was adopted as a child yet the same notes record his biological family as having type 1. His mother as a LADA. That may have contributed to that diagnosis- but it was incorrect. He was also GAD+ - another sign of Type 1 - but he has Hashimotos which can give that reading.
His C peptide levels were normal until near the end when he was really REALLY unwell. They have rebalanced now.

His ex wife was a Type 1 so he knew exactly what to do. He couldn’t stabilise his readings despite eating a very controlled diet. One day - it would be ok - the next he would plummet after injecting. The worst was when I awoke to him like - fitting - he was shaking and not really with it. I gave him coke because I wasn’t sure he could chew his glucose lollies.

I suspect he may have developed an allergy to the synthetic insulin or the preservatives used. Where he injected started to swell, bruise and develop weeping pus filled sores after about 6 months. Some very rare ppl do have insulin allergies but there is very little knowledge within the medical community- his endocrinologist told him that they have never heard of anyone being allergic and that my partner was ‘deluded’ for suggesting it.

But yes. Very sad. Nothing will bring back his physicality or his confidence in the medical profession - though his latest doctor is brilliant and I have hope.
 
His reading the night I found him shaking his BS reading was 0.8. Most of the hypos he COULD catch at around 3.5 -3.8. But after having thousands of them he stopped being able to tell when his sugar crash was happening - which is apparently a thing. Then they would be as low as 1.2.
 
That could have been me. At diagnosis I was told I was type 1, given insulin and left to sort it out for myself.

Thankfully almost by sheer accident, when my BG kept dropping dangerously low, I rang 111 who agreed (via a doctor) that was ok to stop the meds!!! So, in my ignorance and belief that the doctors knew what they were doing, I stopped all meds! The result was good BGs from that point! Six months later I was rediagnosed as a type 2 diabetic. 2 years after that I was labelled as 'in remission'.

I wonder what would have happened if I had carried on with the insulin... and they wonder why I doubt the medics all the time!
 
You possibly would have ended up like my partner. Broken. He has neuropathy, tendonopathy and odema in your eyes which could make you blind. He gets injected into his eyeballs once a month to try and save his sight.

I’m pleased things worked out for you. ❤️

My partner tried stopping his insulin treatment quite frequently too - to give himself recovery time. He would eat small amounts to regulate sugars. He TOLD all his doctors this. Why they didn’t put 2and 2 together is beyond my ability to understand.
 
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