I was right

[lauraw1983]

So I got my test results yesterday, my anti-GAD one.

Lots and lots of antibodies

I AM Type 1 (or clinically I think I will be classed as 1.5 LADA - still to clarify), just as I thought from the start....not a Type 2.

Still awaiting the c-peptide result which should be back by Monday when I am back to the clinic again to find out how I stab myself 4 or 5(?) times a day! They want me to have the insulin there over Xmas etc just incase I need it, not sure when I will actually start it properly - will find out Monday.

Oh deep joy.

Have spent yesterday and today since I found out kind of numb I think, crying now and again - I expected this, don't ask me how I knew I just did...but still it really hits you doesn't it?

I'm very angry with my pancreas right now. 😡

 

[Northerner]

Glad to hear you have a better diagnosis now as it will make a big difference to the treatment (as you have already discovered!). Try not to worry too much about it when it comes to having to do injections - you will do it and we are here to help with any questions you may have 🙂 Hope things go well on Monday.

 

[lauraw1983]

Thank you.

It's not even the actual injections as such (have done byetta and on victoza atm), it's the control it has over everything you do from now on. Every piece of food that passes my lips from now on has to be counted, injected for etc.

And I know people say "you control it, it doesn't control you" etc but at the moment I can't see how it isn't in your every waking thought! Of course it is.

And I am worried about this DVLA stuff, not been in the right frame of mind to google yet - does it mean automatically a 3 year medical licence for EVERY person on insulin?

Alan - I asked on another thread but think you maybe missed it, you have said with your low insulin needs and the way you were diagnosed, do you think your a more accurate LADA Type 1.5 (in theory? I know it doesn't matter as such) Why won't your clinic/gp do a c-peptide test? My DSN says its a pretty important one (now that they know I am NOT Type 2) so they can help calculate what insulin doses I will need etc.

 

[Pigeon]

So I got my test results yesterday, my anti-GAD one.


Have spent yesterday and today since I found out kind of numb I think, crying now and again - I expected this, don't ask me how I knew I just did...but still it really hits you doesn't it?

I'm very angry with my pancreas right now. 😡

Oh Laura, sorry to hear this. Yup, it does really hit you, numb is a good word for how I felt when I found out. But it is good to have a proper diagnosis, now you can get on with getting the medical help you need, and you will feel so much better when you're on insulin. Believe me, after a day or two you won't worry at all about injections, the first few were hard then it was just routine.

And I personally think it's good to have T1 rather than T2, as once you have learnt to carb count you can eat anything you like and just inject insulin to cover it, whereas many T2s have to restrict the diet, and many T2 medications have nasty side effects.

Hope your clinic are helpful and you are able to enjoy some treats over Christmas.

xxx

 

[lauraw1983]

And also, does everyone pile on weight when they go on insulin?

 

[vince13]

And also, does everyone pile on weight when they go on insulin?

I don't know about "everyone" and I've only been on insulin injections (twice a day) since January but I certainly haven't changed in weight at all - still only 8st 7lbs (before diagnosis I was up in the 10st range - not good for a 5ft tall person). Back in 2008, at the ripe old age of 61, I'd lost a lot of weight and I was down to 8st 4lbs by the time they decided I wasn't type 2 - similar tests to the ones you've just had done proved I was a LADA (or 1.5) and the rest is history, although I fought against injections until I had to have them this year.

So welcome to the not-so-elite club within Diabetes - I'm told there are a lot more of us than originally thought - as Alan says, take it all as it comes and you will get used to it slowly. This Forum is a great place to come, as you've already found out, to ask anything or just to rant etc. We look forward to hearing more about how things go for you as and when you feel you want to post. 🙂

 

[Northerner]

...Alan - I asked on another thread but think you maybe missed it, you have said with your low insulin needs and the way you were diagnosed, do you think your a more accurate LADA Type 1.5 (in theory? I know it doesn't matter as such) Why won't your clinic/gp do a c-peptide test? My DSN says its a pretty important one (now that they know I am NOT Type 2) so they can help calculate what insulin doses I will need etc.

Yes, it's pretty certain that I was/am Type 1.5 since I had pretty clear symptoms for two years (but failed to recognise them!) before diagnosis when I got DKA after a virus. It looks like after a few months my pancreas recovered a bit which is when my insulin requirements fell - it looks like I'm still producing some now 3.5 years after diagnosis! One of my consultants think that the fact I was running regularly meant I was making good use of a declining amount of my own insulin. My current consultant would like to do the C-peptide test but the PCT won't pay as there is no benefit in having it - my control is excellent. I suspect I would have been diagnosed as an atypical Type 2 if I had gone when the symptoms started (thirst, peeing and weight loss) like many people who come here appear to have been.

I have put on weight, but I have only regained the weight I lost over the period of my symptoms and diagnosis. Although, as Pigeon says, you can eat what you want and cover it with insulin, you do still have to make sure you don't overeat and get regular exercise like anyone! 🙂

 

[slipper]

Perhaps in a short while Laura, you will feel more comfortable in yourself now that you are properly diagnosed. Good luck with it all.🙂

 

[lauraw1983]

Yes, it's pretty certain that I was/am Type 1.5 since I had pretty clear symptoms for two years (but failed to recognise them!) before diagnosis when I got DKA after a virus. It looks like after a few months my pancreas recovered a bit which is when my insulin requirements fell - it looks like I'm still producing some now 3.5 years after diagnosis! One of my consultants think that the fact I was running regularly meant I was making good use of a declining amount of my own insulin. My current consultant would like to do the C-peptide test but the PCT won't pay as there is no benefit in having it - my control is excellent. I suspect I would have been diagnosed as an atypical Type 2 if I had gone when the symptoms started (thirst, peeing and weight loss) like many people who come here appear to have been.

I have put on weight, but I have only regained the weight I lost over the period of my symptoms and diagnosis. Although, as Pigeon says, you can eat what you want and cover it with insulin, you do still have to make sure you don't overeat and get regular exercise like anyone! 🙂

Interesting.....it's a shame they won't fund it - it's not that expensive. 🙄

I have to say in all of this, I feel lucky to have the diabetic clinic I do, they have been very good through all this - always at the end of the phone etc, swapping treatments when I felt rotten on certain things etc. I guess I'm gonna get to know them a whole lot more over the rest of my life(!)

Will I really start to feel much better when I start on insulin? I'm scared.

Also just to add insult to injury, I also have a horrible UTI and had to start on antibiotics today. Le sigh. 😡

 

[Monica]

Sorry to hear about your result. But better to find out properly and then be on the right "medication".
I can only tell you what Carol said to me a few days after starting insulin.
Before diagnosis, we were worried about her and I told her we'd take her to GP, but she insisted she wasn't poorly.
Well, this is what she said later: mummy I must have been feeling poorly after all, because I feel a lot better now. She was 10 at the time.

Good luck with your insulin start. Hugs

 

[HelenM]

Before diagnosis, we were worried about her and I told her we'd take her to GP, but she insisted she wasn't poorly.
Well, this is what she said later: mummy I must have been feeling poorly after all, because I feel a lot better now. She was 10 at the time.

I know exactly how she felt. I loved the fact I could buy very small sizes, I loved the way I looked at my son's wedding(you can never be too rich or too thin). Not my mother, but my daughter who nagged me to go to the doctors, (didn't do what she said so DKA intervened).I felt so much better once I went onto insulin.
Laura, you will feel so much better with the correct diagnosis and treatment.

 

[Northerner]

Well, I was in a dreadful state when I got into hospital - hadn't eaten or drunk anything for 5 days prior without being sick. By the following morning after being on intravenous insulin I felt fit as a fiddle and bursting with energy - and hungry! For the 8 days I was in hospital I ate absolutely everything I could off every menu I was presented with - I could have eaten a horse between two bread vans! It was only really after getting regular insulin again that I realised how rotten I had been feeling for months and months - had just put it down to depression, drink and increasing age and decrepitude! 😱

My problems came afterwards not from insulin but from side effects as they put me on loads of medications for a suspected heart attack. I felt nauseous all the time and it was difficult to determine which if the pills was causing it.

So I would say yes - once you get the insulin you need and more stable levels you will feel much better 🙂

 

[lauraw1983]

Sorry to hear about your result. But better to find out properly and then be on the right "medication".
I can only tell you what Carol said to me a few days after starting insulin.
Before diagnosis, we were worried about her and I told her we'd take her to GP, but she insisted she wasn't poorly.
Well, this is what she said later: mummy I must have been feeling poorly after all, because I feel a lot better now. She was 10 at the time.

Good luck with your insulin start. Hugs

Oh bless her *sniff*

You parents of children with this blasted disease, I don't know how you do it. Well obviously I do, but you know what I mean - it must be very tough at times. You all deserve lots of hugs and recognition xx

 

[lauraw1983]

Well, I was in a dreadful state when I got into hospital - hadn't eaten or drunk anything for 5 days prior without being sick. By the following morning after being on intravenous insulin I felt fit as a fiddle and bursting with energy - and hungry! For the 8 days I was in hospital I ate absolutely everything I could off every menu I was presented with - I could have eaten a horse between two bread vans! It was only really after getting regular insulin again that I realised how rotten I had been feeling for months and months - had just put it down to depression, drink and increasing age and decrepitude!

My problems came afterwards not from insulin but from side effects as they put me on loads of medications for a suspected heart attack. I felt nauseous all the time and it was difficult to determine which if the pills was causing it.

So I would say yes - once you get the insulin you need and more stable levels you will feel much better 🙂

See although when I was in hospital, I said I had been ok up until a couple of weeks prior to ending up in there....thinking back now as I have been doing, I have been feeling pretty rubbish. Tiredness, and yes I also thought I was depressed - I did see a GP about it, put it down to my partner working away most of the summer etc, dealing with 2 little ones on my own, working etc.

I think it's all been linked to my sugar levels creeping up 🙄

I think if I hadn't been 'on the ball', and aware of diabetes (due to family history and my previous nursing), I wouldn't have used my mums meter to check my levels myself and probably would have let it go on longer and possibly ended up in DKA.....who knows though for sure.

I do just want to feel well again, and like ME. I don't think I HAVE felt like me for longer than I realised.

But still scared of insulin in some way, gah.

What about this DVLA stuff then...are they going to automatically give me a 3 year licence? Cant bear to google and read the doom and gloom....

 

[Northerner]

...What about this DVLA stuff then...are they going to automatically give me a 3 year licence? Cant bear to google and read the doom and gloom....

Yes, it is a 3 year license but I don't think there is normally much difficulty in getting it renewed as long as you have looked after yourself well. I don't drive so don't know a lot about it 🙂

 

[Robster65]

Hi Laura. Glad (sort of) that you were proved right.🙂

As Alan says, the 3 years licence is just a formality as long as you do what you're meant to do.

I've been renewing mine every 3 years since I was 19, I'm 46 now, and have never had a problem. It doesn't cost you anything extra either.

As you suggest, carbs and insulin do tend to occupy your mind quite a lot but you adjust to it very quickly so it becomes the norm. It's not that you have to deny yourself anything, just think about it in a different way. It really is better than being T2 on diet because you have complete control within reason. And I only gain weight if I eat more than I need. A bit like every other person on the planet. Don't believe the hype about insulin. Just match it to what you eat and match what you eat (calories) to what you need. Shimples !!

Rob

 

[everydayupsanddowns]

Well done for getting the right diagnosis. As others have suggested, I also think t1 might be the easier to live with. Hope you begin to come to terms with your new world over Christmas. I'm sure you'll find your feet with insulin etc really quickly.

 

[schmeezle]

Hi Laura.......Not the sort of news anyone wants to hear - at least you know where to focus your attention. I "second" the motion, you'll feel better once insulin's flowing. Personally, can be summed-up as improved mind (could think clearly again), body (out w/fatigue, in w/energy) and soul (I felt back to my old-self, except with a lot less sweets) . There are other positives......you're way ahead of the game having joined here when you did.

 

[trophywench]

Oh Laura ! {{{Hugs}}}

10-15 minutes after my very first insulin jab a very VERY weird sensation came over me. It started at the tips of my toes and swept up my whole body, like a tingly sensation - like when you lie on the sand at the edge of the Med and a small ripple of water comes up - yet once it had passed that bit of me, that bit felt normal again, not waterlogged. Sort of like a breath of fresh air that woke all my body parts up, I don't know how else to describe it. Kinda like my fairy godmother had touched my toes with her wand and the fairy dust and sparkly stars had gone up my body. I was pretty rigid with fright (in a side ward on my own)and remember holding my breath because - would my head explode or something when the sensation got up that far? But it didn't so I sort of shook meself and started testing if my fingers and toes wiggled and stuff, and then when they did, got up and walked round the bed .....

And I suddenly realised how utterly, utterly c**p I'd been feeling for TOO long. Just the same as Carol really! reckon the only thing that actually kept me out of a complete DKA coma must have been the VAST amounts of finest Welsh tap water I was drinking.

Have a damn good cry Laura. Have a rant. Have a scream! Have a real good old temper tantrum and throw anything you can find that won't hurt (cushions, pillows, teddy bears) against the wall repeatedly and then stamp on them. Don't even try to be positive about it.

It's allowed. It does you good. Cos you will find that 'sensible Laura' will soon take back over again once you get it over with.

Who actually gives a stuff about 3 year licences? - it just becomes a mere formality. Please don't Google. Just ring the DVLA Medical branch, keep pressing whatever options they give you till you eventually get through to a person, who will reassure you and send you the correct forms!

They honestly don't put obstacles in our way. Just ask questions and proceed from there depending on what answers we give! And they send out the renewal forms well in advance of each expiry.