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Type 1.5 - LADA - Halstar66

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Halstar66

New Member
Relationship to Diabetes
Type 1.5 LADA
All,

I am new here, so here's my story.
I was 24 years a soldier, then worked abroad as an electrical engineer, always kept fit and active.
Last year at 49, after 4 months of losing weight, I was wrongly diagnosed with type 2, and given metformin tablets.
More weight loss, confusion and irrational behaviour, pushed me to my doctor again. This time he realised I had lost more weight and was becoming very disorientated and had to be supported when walking. I could hardly speak too.
He suggested I have a urine sample and blood test, but wasn't too concerned? Until he dipped the urine, then he wanted me in hospital straight away. Ketones up the ying yang.
At RUH Bath, they correctly diagnosed type 1, then put me on the sliding scale, I hate needles and injections, but as soon as they started the pumps I could feel the life surging back into my body. It was amazing.
They were confused why I was diagnosed with type 1, and was asked all sorts of questions, no family history, no type 2? I was totally in the dark about it all.
During the night a junior doctor appeared at my bedside, and asked if I had any viruses lately......BINGO, I caught viral flue, right before I started peeing for the Army, and drinking for the Navy, and not having had a cold or flu, for 10 years, this was the culprit. My eyesight totally went too, so I couldn't see distance road signs.
When I tell people I caught diabetes because of viral flu, they laugh, but hey, that's what he said, and the nurses in the morning told me its 1.5 LADA. Autoimmune, pancreas, insulin, all too much to take in, at the time.
After having a laugh with everyone on the ward, getting taught how to stab myself, I left that evening. Although they tried to keep me in for longer. Hate hospitals.

At first I was blooming angry, lots of questions followed by rants. Followed by a stiff few drinks, followed by regret, guilt and a day of being down, and feeling sorry for myself. Followed by some hours on the Internet. I did get very low, and became almost unapproachable, which to those that knew me, was the most shocking attitude change they had seen.

I couldn't tell people, as I thought they would look at me differently, I still feel that way, although I don't show it. Some people wear it like a badge, I still tend to hide it, as physically I'm no different. Mentally, it has affected me. I don't want to appear weak or half a man, as I did early on, I know it's a macho thing. My old Army mates I tell, almost look sorry for me, and that look of pity destroys me. When they ask if I inject, they grimace, and say they couldn't do it, I say you have to, and that's my life now.

The exercise helps, and I admit I am not good at keeping the levels within range, I still do everything I did before, as far as exercise, climbing, mountaineering, kayaking, and with the exception of a hypo here and there after a long bike ride, I don't feel that different. The ketones that are present when I test, disappear after a corrective dose, and there are times when it's all over the place, due to stress, too much exercise, or injury. Or just because it is.

I have always eaten well, and enjoy Mediterranean food, with some deviations.

I have learned that the body is a strange machine, but the mind can overcome the problems the body goes through.

So I keep trying, each day is a new challenge, it is hard at first, especially carb counting, I have the Ap, on my phone. There are days single figures make you smile, and days when you cannot get your head round it.
What I have learned is, if you know why the readings high, then you are almost there, and you can correct that.

I don't think I'm best placed on this forum to give advice, as there seems to be more informed people on here than me, but I'll try when I can for everyone on here, as I know support and understanding are the key to getting to grips with it. I look forward to chatting to you in the future.

Good luck.

Ian
 
Hi All,

I've just changed surgery, and they will only give 1 monthly prescriptions? Is that normal?


Thank you.


Ian
 
Hi Ian, welcome to the forum 🙂 Wow, I could have written much of what you have, certainly in the lead up to diagnosis! I was also 49, fit and healthy - due to run a marathon the week I was diagnosed - had symptoms for a while and lost weight, ignored it. Then caught a virus, fell extremely ill and ended up in A&E, very disorientated, ketones through the roof and DKA. Just like you, as soon as they gave me insulin I felt as fit as a fiddle and started thinking that I might actually make that marathon after all! 😱 Sadly, I hadn't realised just how poorly I had been and I was still in hospital 8 days later.

There I think we diverge a little. I went straight to a Type 1 diagnosis rather than getting misdiagnosed, although many of our members have been misdiagnosed, based purely on age, by their GPs. I'm really Type 1.5 as I still have some insulin function 8 years on (I stopped needing basal insulin 4 years after diagnosis!). I'm not bothered by needles and have never felt the need to hide the fact I have diabetes - I don't view it as being any different to something like asthma or any other chronic condition - I'm just really grateful that it can be managed well and doesn't have to stop me doing things. In many ways, it's probably resulted in me becoming healthier than I might otherwise have been due to the fact that I have a much clearer knowledge of my body and what I need to do to keep things ticking along 🙂 Your reaction is far from unusual though, it affects people in many different ways. I think it can help a lot to be in contact with others who share similar experiences, so I hope you will find that too, by getting to know the people here 🙂

What insulin are you on? Regarding prescriptions, it appears from what I have read here that monthly repeats are quite common, although I am fortunate not to be subject to this 'rule' and just order my supplies when I need them - usually every two months for me. I think the idea behind the monthly ones is to try and reduce waste - a lot of people don't actually take the medications they are prescribed, although it's not likely to happen with us, is it? 😱 They certainly can't refuse to issue your supplies if you run out before the end of the month as this could place you at extreme risk. It might be worth writing to the Practice Manager and explaining why you would appreciate less frequent repeats, as this would save time and money for everyone involved as far as the NHS is concerned.

Please let us know if we can help in any way. There is a very broad range of knowledge and experience here, and the natives are (mostly) friendly! 🙂
 
Hi, Ian, and welcome to the forum from yet another one misdiagnosed aged 51, initially as type 2. In my case, luckily my GP was aware enough to realise I 'must be a peculiar type2' and referred me (eventually) to the hospital, where I was correctly diagnosed type 1. I'm now 9 years down the line, and I do find my levels stay more in range now I've got several years experience behind me. They do change from time to time, and it's easier to spot, for example, 'it's Spring, so my basal needs to go down' once it's come around a few times.

I asked the consultant what caused type 1, and he admitted they didn't really know, but were working on the theory that it was a genetic predisposition triggered by a virus. I do have one instance in the family history, my great grandmother, but we also have other autoimmune condiditons scattered across the family. I don't remember being ill, particularly, before disgnosis, though, so it's still a bit of a mystery.
 
Hi Ian and welcome to the forum. I was also diagnosed as type 2 then my GP sported that I was a bit odd (keep your comments to yourself people!) and I am MODY (maturity onset diabetes of the young), not bad when I was diagnosed at 39!
 
Hi Ian,
You aren't on your own - I was diagnosed 3 weeks ago (after 44 years of good health) and there is no family history so am still well and truly at the "getting my head round it" stage. I have also gone through the why me stage, and the angry stage, and pretty much everything you describe. I was lucky in that I had a quick T1 diagnosis but there is so much to try and get my head round while being careful and learning how to change my habits of a lifetime.
I don't know if I should tell people either, and some of the reactions have been interesting - most simply don't know what to say and the pitying look? Yep, had that a few times.

But being on here is good - my nurse recommended I have a look and it didn't take long for me to sign up.
Other members on here seem extremely knowledgeable and friendly so I know I'm going to be on here alot, as I want to make sure I manage my condition instead of it controlling me.
I'm sure we'll bump into each other from time to time!
Take care
zx
 
Hi Ian, and welcome 🙂

I was 44 when I was diagnosed, and I have no auto-immune disease in my family either - like you, I confused the consultants no end. But I did already have a neuro-immune disease (which may well have a viral origin), and I suspect that that is what led to my developing diabetes.
 
Ah well they always ask you if you've had a virus - hasn't changed much since 1972 has it!!!

What an incredibly stupid thing for that doctor to say - if it was catching - 100% of the population would be Type 1 by now. Whereas there's less than 9% of the diabetic population of the world that is T1, since the folk who aren't T2 (eg LADA, MODY, post pancreatomy patients, etc) are included usually too. Plus the hospital must be pretty clueless how General Practice works, if they were puzzled that your GP assumed you were T2 !

I'm more than a tad concerned that you so blithely mention ketones in the same breath as hypos. Ketones have been exceedingly rare in my history. Hypos have been a bit too frequent at times - not now - but the important thing about either highs or lows is to identify exactly what probably caused it and try your hardest not to let them happen again by learning what to do to prevent them and ensuring you do that instead. (as far as possible, LOL)

One of the best suggestions made to me when I was gripped in the clutches of stress, anxiety, panic attacks and their resultant paranoia was - when I knew very well that the highs hadn't been caused by 'user error' - eg miscalculating carbs and therefore boluses etc - and was as sure as I could be it WAS stress - to only correct with HALF the dose I'd normally give for a high. Sounded blooming stupid to me. But hey! - I'd tried everything else I either already knew or had discovered that sounded a sensible idea - so what the hell, I certainly have nothing to lose - I'll try it then - and prove you wrong!

Did I heck prove her wrong - she was only ruddy well RIGHT. It worked. What a flippin' relief.

I'd recommend trying it, it has only two possible chances!
 
Hi Ian
I was a late blooming flower too, although strictly speaking I did just get in under the "under the age of 40" bracket because my symptoms started prior to my 40th birthday :D. The pity bothered me too for a while, but there's no weakness in driving your pancreas on manual, none at all, in fact you might find those mates of yours admire your strength rather than anything else. I'm not a bloke, so that whole alpha male thing is quite the mystery to me, I don't mean to minimise your feelings in any way at all, but I don't believe strength is about physical prowess, look at the invictus athletes, they're bloody marvellous, picking yourself up after that kind of physical and mental trauma and achieving greatness, now that is the kind of strength I aspire to. I have a tendency to waffle on, so I'll just say welcome aboard 🙂
 
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