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So I've finally got my diagnosis

AmyGreen

AmyGreen

Active Member
Messages
28
Location
Bingham, Nottingham
Type of diabetes
Type 1
Treatment type
Insulin
Hello everyone.
Some of you may have read my previous posts.... long story cut short (isn)
Was diagnosed with GD at 10 weeks pregnant, with a HBA1C of 105 (found this out to be 11.6%) so doctors assumed I was diabetic before pregnancy and didn't know. Also they said they couldn't diagnose which type due to being pregnant. I was started off on metformin but within a week around 11 weeks pregnant I was put on insulin as my levels needed to be lowered. I was on novorapid and levier. Doses changed a bit during pregnancy but tended to be towards to the lower end I'm guessing.
Anyway I had my daughter 1st April and they told me to stop taking insulin and to basically monitor my bs in the morning and before bed and sometimes before meals as well.
I was doing that until last Friday and I could see my levels were increasing and again not brilliant. During the birth of my daughter and the appointment I had letters saying my islet? was negative, however, my anti GAD antibodies were a very strong positive. Before this and when I was discharged from hospital, the doctors and the diabetic nurse I've been seeing (who is lovely and so nice) were still on the fence as to what type I have. Oh and also once during the pregnancy I had another HBA1C done and I'd got this down to 62, but not sure how much lower this went as that was still quite early on, I'd not been on insulin for that long, but I must have done a good job as my daughter was born at 38 weeks and 5lb 11 (not a massive baby as my friends all kept telling me I would have due to being diabetic).
Anyway so my appointment last Friday. I went to see the consultant, (was a bit annoyed to start with as he was someone I'd never seen before and my appointment was meant to be with a consultant who I'd seen a few times during the pregnancy. Even then there were a few doctors I saw), but as it turned out he was a nice man. I briefly explained the situation and showed him my bs readings and straight away he said about putting me back on insulin. Now to complicate the story even more, me and husband want another baby, so he just advised to get my HBA1C to 7% before we start trying. Even if we weren't trying/wanted to try he still was adamant about the insulin. I was worried they would put my back on metformin again (didn't agree with me before) but he was just no no, insulin is better. I then asked so am I type 1, or 2. Before the appointment I'd researched a bit and I've come to the conclusion that I'm Type 1.5. Anyway he said 1. Obviously as he said I am still producing some insulin, but I'm Type 1, due to my high levels of anti GAD (being 1329 and he said normal is below 10, and I'd read below 5), so yes it's a strong positive.
So I've been put back on insulin, small amounts at the moment and generally my readings seem ok, still not brilliant, but I'm getting used to taking it again and working out my insulin needs for each meal. Also on Friday I did have some more blood taken and I rung to get my HBA1C result and it's 52 (6.9%) and I am so pleased. I did expect it to be higher seeing as I went for about 10 weeks just diet and although I was good (obviously had some naughty days) my blood sugar readings were increasing.
So there may be people out there questioning my diagnosis (I'm 26 by the way and this started when I was 25) as at one stage of my life I was overweight but I was normal weight when diagnosed and people may think I should be put on tablets and diet first before insulin but to be honest I'm just happy now. There is non of this (well for now anyway) as to what Type I am and I can start to get better. I know now I'm on insulin it will be for life and I will have to get used to working out carbs and injecting myself but at the moment I'm seeing it as a start that I'm going to have to get used to. Plus better now than in a few weeks, months, years even finding myself to be very very poorly. I'm sure one day it will just hit me like a bus, realising that this is a proper life changing event, but for the time being I'm seeing the positives.
I've got to take it one day at a time I feel determined now to get much healthier for myself and now my daughter, plus any future children. I mean I'm often saying right I need to lose some weight as so many other people do so I'm seeing it just like that. I've got to get my bs better so that I'm not at risk of getting my foot amputated. A weird analogy I know and I don't mean to offend anyone saying that, but it's not time for excuses now. Diabetes is actually serious. Plus as the doctor said I am still producing my own insulin, but I'm assuming there will be a time (maybe not long, maybe a few years) when my body will not produce any, so I might as well start off as I mean to go on.
Wish me luck........
 
Good luck amy, sorry to hear you need insulin, but, at least with that diagnosis it will prevent you from being seriously ill in the future and possibly complications. Also you will be able to monitor yourself without fear of repeat prescriptions being rationed, whilst also being monitored by your team. Keep your positive attitude sounds like your coping very well, all the best :)

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Hi Amy,

That's good though right? You wanted to be on insulin? I guess it doesn't really matter how you control your diabetes as long as its controlled and that's going to be different for everyone. It's right about your baby though that's a good size, my son was 9lb 11oz and was 3 weeks early!

My consultant initially asked me about going onto insulin at diagnosis but now he won't put me on insulin as he says I don't need it as I brought my Hba1c down from 83 at diagnosis to 45 six months later (last week) and my levels are good with Metformin.

It's a game of two halves really coz the last few days I've been craving chewitts really really bad! My family and stuff say to me oh why don't u just go onto insulin then you can eat whatever you want but I'm not sure that's true as all the type 1s on here follow a diet that's good for diabetes rather than just eating whatever they want and injecting massive amounts of insulin..... Though I am aware of a few type 1.5s like me who want insulin purely coz they don't want to change their diet and think they can at least eat whatever they want if they're on insulin..... I'd be interesting to get some type 1s opinions on that......

My GAD result at diagnosis was just over 300 so I guess I caught it early.....


Diagnosed with GD in 2010, Completely disappeared postpartum. Re-diagnosed December 2012 with type 1.5 diabetes, age 26, BMI 23 currently controlled by only Metformin, 500mg twice a day.
 
Yes the insulin is what I wanted.... I think.
There probably will be a time when I'll probably regret saying that, we'll see.

That's really good for your HBA1C. I'm really surprised mine is currently 52, hopefully it should continue and go down now.

You've made a good point with regard to diet and insulin. I'm sure I will have my moments when I will just be well I can eat it and I will just make sure I take enough insulin to cover it, or maybe I won't. I've got to take everyday as it comes, but yes that would be nice if there are any Type 1s on here who have an opinion with regards to this....
 
Oops when i said 'i know some type 1.5s like me who....' I meant that they're like me because they're 1.5s, not that they're like me for wanting to use insulin to eat what i want. I sometimes think about it but when I really mull it over, a packet of chewitts every now and again isn't worth insulin dependency....to me anyway but that's just a personal thing.....


Diagnosed with GD in 2010, Completely disappeared postpartum. Re-diagnosed December 2012 with type 1.5 diabetes, age 26, BMI 23 currently controlled by only Metformin, 500mg twice a day.
 
Hi Amy'
I was diagnosed in 2011 as type 1 at 46 years old. had a honeymoon period for almost a year and then gradually started to eat less and less carbs to keep bg down, but found i was losing weight, but bg rising. Can't afford to lose more weight as im already a bit skinny and started to look too thin so consultant said time to go back on insulin. I have to say it is a relief to be back on insulin as i know roughly what bg levels are going to be and am not worried about them creeping up. My diabetes nurse, who is also a friend, has been amazing, and has always said that you get much better control with insulin. I never thought I'd say this but life is much less of a worry now as my levels were running to high and as a nurse, am well aware of the risks of high bg.
Good luck with the insulin
xx
 
Hey Amy!

Glad you're coping well. Life on insulin isn't so bad really. It's a bit of a pain when you've cleaned your teeth ready for bed and then you do your night's blood test and find you need to eat something :lol: Seriously, I'm much better on insulin than I was before.

Hi Elaine!

The trouble with eating what you like and jabbing to cover it is that you will almost certainly put weight on. Insulin isn't called the fat making hormone for nothing! You then run the risk of the dreaded double-diabetes - i.e. you develop insulin resistance on top of your Type 1 and you have to take ever-larger doses of insulin to beat the insulin resistance - so you put more weight on. Not a good place to be! Also, the more carb and **** you eat, the larger the doses of insulin you'll need to take and the bigger your mistakes will be. When you make mistakes (which i promise you you do!) on small doses of insulin, they're easily corrected, but when you're on high doses, even little mistakes will make your BGs swing wildly. Honestly, the easiest way to avoid serious hypos is to stick to small doses - which means low(ish) carb.

Smidge
 
Thanks smidge, I knew there was a reason why type 1s didn't just eat whatever they wanted...it's a shame that food is such a pivotal thing for some people to the point where they are literally killing themselves with food..... :-( I bet it wasn't like this 100 years ago... Simpler times....


Diagnosed with GD in 2010, Completely disappeared postpartum. Re-diagnosed December 2012 with type 1.5 diabetes, age 26, BMI 23 currently controlled by only Metformin, 500mg twice a day.
 
Hmm, I wouldn't say I eat what I want when I want but would say I have not adjusted my diet at all as it was quite healthy before. Regular meals, wholegrain where poss, plenty veg the occasional treat and the odd night out. As an approximate I would say I aim for 300 carbs a day which would be roughly 1200 cals a day, nearly half of my recommended cals per day. But, at 6ft 3, athletic build and still trying to add some bulk I couldn't and wouldn't want less. So, have learned to manage my insulin with what I eat. I have a very sedentry job, sitting at a desk mon~fri but, when not in work very active and regular excercise. Much more like my old self as did go through a bad patch a while ago feeling unable to do anything. Did loose alot of weight pre diagnosis and STILL not back to my original weight, but am getting there slowly, but physically could not eat more than I do. so, my theory is that yes insulin is a growth hormone which in many cases add weight but, if having a normal healthy non diabetic diet, regular excercise not a certainty, after all if matched correctly should be injecting what your body would be giving you were u not diabetic. Won't be that simple for everyone I know and has took a long time to learn what works for me and how much to adjust for certain activities. Should you eat what u want when u want and inject to match u will easily gain weight as would a non diabetic with a poor diet.

Sent from my GT-S5360 using DCUK Forum mobile app
 
Just to bring you down a bit Amy (apologies) but T1 is no party. As I awoke from a hypo to a very pretty ambulance lady today I enquired as to where I was to be told "no longer face down in the swimming pool" oops!

You'll need to work out what works best for you, when my kids were little I tended to run a little high as later life complications seemed less of an issue than my likely craziness when hypo. Supportive family and friends can help but learning your own symptoms is a must.

Good luck!


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Hi Brett!

Yes, I guess at your height, build and activity level you are able to handle more carbs than many of us. I'm 5 foot and just over 7 stone and carb plays havoc with my BGs no matter what I do. I also think full Type 1 can often be more stable than LADA which is notoriously blippy. It remains to be seen whether Amy and Elaine have LADA or Type 1 I guess, but they'll have to find their own balance of carbs:insulin:BG control:weight. It's all a bit trial and error I'm afraid. For example, I can eat a few roast potatoes with minimal bolus requirements, but a single slice of bread sends me into double-figures and then into hypo - and I've tried everything to get the insulin:bread balance right but it just won't happen :( Having said that, a single jelly baby is all I need to raise my BGs by 2.5 mmol and they only have 6g carb in them :crazy:

Smidge
 
Yep, definitely harder if type 1.5 or in the honeymoon phase. When I was in the honeymoon period found control very difficult with very erratic highs/lows and massive drops.

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Ur right It is very confusing this LADA business...clearly I'm insulin deficient not insulin dependent at the moment which is hard because I don't know how much insulin I'm producing compared to how much I need? If that makes sense. Plus the fact its probably changing all the time doesnt help either.... The whole GI stuff probably plays a much bigger role for us LADAs too hence why I switched everything to low GI where possible....

It's very weird because I can eat one or two biscuits and my BS will be fine maybe 6 mmol at most but bread or chips and I shoot right up to at least 9 mmol.... Dread to think what would happen with mashed potato... I seem to handle sugar better than carbs for some reason..... Maybe sugar takes less insulin to convert than carbohydrate does??

Since I have been diagnosed my morning BS has been 7-8mmol without fail no matter what I do or eat before bed and yet 2 of the last 3 mornings I've had 5.3 and 5.6 mmol respectively....no idea why! Then there's the time I ate some pizza, got paranoid so tested an hour later and got a 5.4 mmol.... My pancreas clearly has some issues.....


Diagnosed with GD in 2010, Completely disappeared postpartum. Re-diagnosed December 2012 with type 1.5 diabetes, age 26, BMI 23 currently controlled by only Metformin, 500mg twice a day.
 
Help Smidge! My pancreas is being odd again... Is it ok to go to bed on a 4.3 mmol when I'm not on insulin? Presumably I can't have a hypo on Metformin? But will it leave me open to a glucose attack from my liver if I go to bed that low?? I ate plenty, I actually had a pork roast dinner for my meal so I don't know what my pancreas is playing at!


Diagnosed with GD in 2010, Completely disappeared postpartum. Re-diagnosed December 2012 with type 1.5 diabetes, age 26, BMI 23 currently controlled by only Metformin, 500mg twice a day.
 
Hi elaine, really don't know on metformin only. I have heard alot of people in your situation would have some protein prior to bed to prevent a high in the morning. If it were me I would have a small amount of carbs also or just a small sip of a sugary drink. Hope has helped.

Sent from my GT-S5360 using DCUK Forum mobile app
 
Thanks Brett, that's what I was worried about, my liver going crazy and glucose-dumping to high heaven lol so I have had a raspberry and cranberry yoghurt as it was all I could stomach this close to bed, I really can't eat this close to bed I struggle with it massively! Thanks for such a quick response :-)


Diagnosed with GD in 2010, Completely disappeared postpartum. Re-diagnosed December 2012 with type 1.5 diabetes, age 26, BMI 23 currently controlled by only Metformin, 500mg twice a day.
 
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