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I am new today, any one else in my situation?

L

littlesis

Member
Messages
7
Hi All,

I am knew here today and thought i would see if any one else is in my situation:

I will try to sum this up as short as I can!!

Was never really overweight, fell pregnant in 2002 and got VERY sick, in and out of hospital during pregnancy and diagnoised with Hypermesis Gravidernum (SP?) had a 7lb baby but nothing was done to really investigate why i was so sick?? fell pregnant again in 2003, gained a huge amount of weight and had a 10lb baby.

Now, since my second child was born I was so tired (put this down to being a paent with 2 young children) so thirsty, i could drink an ocean and not feel better, my eye sight played up with watery/blurred vision and my urination increased to the point I did and still do have to get up to go in the night!!

Now, i spent many years asking the doctors for help, after stomach biopsies, blood tests, etc nothing!! Then 3 years ago I couldnt cope with my symptoms any more and returned to my doctor, he said 'hold on, i need a sample of blood from your finger' a minute later he said your blood sugar is 27 you are diabetic type 2, now i was only 29 but was still overweight, they said they believed i had gestational diabetes that did not go away??

I lost 5 stone within the following year of diagnosis and I have kept it off and im now 10st 10lb at 5f 8" but I have had every combination of tablet form drug possible over the last 3 years and they all workfor 3-4 months then my bloods would rise again to high 20's this happened recently again and depite the maximum dosage of Stiglatipin, Metformin and Gliclazide twice daily my bloods were still between 18-27 with a healthy diet, fasting bloods 18.5.

Today I saw the district nurse who said I am a complicated case but she has decided to change my originall diagnosis from type 2 to now type 1 and I have today started 2 forms of insulin with 4 injections a day.

I am somewhat confused to say the least, every medical person I see always questioned me about the type 2 diagnosis some even saying I am mistaken!!?? Surely if i was type 1 it would have been detected many years before or i would have become seriously ill without insulin?? is that correct and i'm guessing i would possibly have had keytones? But, they also say they do not believe I am type 2 as i was very young and not overweight when I originally got ill and i am not now but even with medication I am now able to produce enough insulin?!

I have joined as my last nurse quite frankly was rubbish and i do not know or fully understand enough about either types but i wondered if any one else has had mixed feelings/diagnosis from professionals about what type you are?

I need to contact the DVLA to notify them of the insulin but i dont even know if i am a type 1 or 2?

Any advice? help? any thing?

If you got this far then thank you :D

Christina
 
i cant help you much i just wanted to welcome u and offer my support there are loads of helpful people on the forum and im sure some have had misdiagnosis as ive read it before so im sure they will be along at some point with help and advice.

good luck

anna marie
 
It sounds as though you have T1.5/LADA which in the early stages the patient responds well to oral medication but over time this slowly deterioates... Hence why you haven't suffered some of the major DKA etc that is associated with T1 diabetes..

I was in a similar situation to yourself, I had slow on set T1, which my consultant wouldn't change his mind convinced that I was T2 from what he thought was GD.. Even though I was Dx'd as diabetic at the same time I found out I was pregnant (same phone call) even though getting it in the first trimester ment that it indicates that it isn't GD at all!...

I had to change consultants as my first refused to entertain that I had T1 even though I was extremely ill by this point.. My new consultant said that I was T1 slow on set, the fact over this period of time I had 2 babies had helped to extend the full impact for me.. But he and other consultants who have studied my medical records can not work out how on earth my first consultant misdx'd me! As all the clincial indicators where all there to say I was T1 not T2 diabetic!
 
littlesis said:
Today I saw the district nurse who said I am a complicated case but she has decided to change my originall diagnosis from type 2 to now type 1 and I have today started 2 forms of insulin with 4 injections a day.
Click to expand...
It's (a form of) type 1. You are not a complicated case, the district nurse just doesn't know much about diabetes.

Have you ever seen a consultant (endocrinologist) about your diabetes? The one I saw was surprised I was ever diagnosed with type 2. He said if you are under 40 when diagnosed with diabetes, and have not been morbidly obese for years and years, type 1 would be much much more likely than type 2. He says it's quite common for GPs to misdiagnose diabetes.

Yes you might still produce insulin, this will get less and less as more beta cells are killed off though. By starting insulin now, rather than continuing with medication that makes your beta cells produce more insulin, your beta cells don't have to work as hard, so might survive longer.
 
Hi,

Yes we seem very simialr in our cases. I am yet to get an appt with the specialist but the nurse has already increased 3 of my 4 daily doses of insulin so i guess it is finding the right balance now!!

Thank you for replying :D

Christina
 
Hi,

Thank you for the reply, i should clarify, the district nurse I have now is fantastic it was the nurse at the doctors surgery that wasn't very good!!

I have not seen the specialist and not even been given an appointment date so maybe this is something i need to push for?

Many thanks

Christina
 
hi littlesis

not the same situation for me in fact quite the opposite but some of it may assist. i put up with the constant thirst, drinking litres and litres of fluids a day and the constant trips to the toilet for a while putting the thirst down to being a smoker.

eventually got fed up with getting up three times a night to go to the bathroom (and having a drink while i was up as i was so thirsty knowing this would mean another trip soon!) and went to see my doctor.

did some blood tests and then got a call from the local diabetic clinic saying i was diabetic and needed to see them that day. they said the keytones were off the scale, my bs was 26.9 and therefore i was type 1 and went straight onto injections - insulatard and novorapid.

had an appointment with the consultant three months later, my hba1c was 7.1, she said it was 'satisfactory'. Therefore i upped the insulatard and when i went back 6 months later my hba1c was 5.7 so i thought that would please her. in fact quite the opposite, she said it was too low and decreased the insulatard dose. she said a reading of 5.7 was too much like a non-diabetic! she also then told me that she thinks i am in fact not t1 but t2 but had been suffering for a long time before it was diagnosed. she said that i could consider coming off injections and going onto controlling it with tablets and diet. i declined because i was by then used to the injections and she told me that inevitably one day i would return to injections so it seemed pointless.

it has left me confused / wondering what is going on but from reading about other people's experiences on here i've come to the conclusion it doesn't matter whether it's t1 or t2, the only thing that's important is controlling it.

i'm epileptic as well so have had issues with my driving licence with the DVLA over the years. they wanted to know about the diabetes and i filled in yet another medical form. at the time i think the lowest reading i'd had was 10 or 11 so hypo not an issue. they had just changed my licence from a short-term licence (renew every three years) to a longer term licence which meant i was able to re-apply for the van and small truck entitlement which i was keen to do. this class of vehicle had been on my licence before it was taken away but was not present when i finally got my licence back (7 years!). when i told them about the diabetes all they did was put me back on a short-term licence

the point is that if your levels are that high it seems unlikely to me that the DVLA will take your licence off you.

i find living with diabetes can be a drag mainly because i have a fear of needles so injecting myself was hard to start with and also having to look at the nutritional information labels on everything i want to eat in case i need to inject myself but it gets easier with time.

as someone else has commented i also found that once i started injecting insulin my body started to recover some of that functionality and has started producing some for itself although i know it's only temporary.

all i can do is repeat that controlling the bs levels becomes easier over time as you get used to it. this forum is an amazing source of useful information because you learn from the experiences of people that live with the condition not the opinions of someone who has read a few medical text books.

you should definitely be asking when you're going to see a consultant and definitely make sure you pester your GP as regards when you'll have a retinal eye screening test to see if there's any damage to your retinas.

hope some of my experience helps you get through the difficult first stages and you find comfort from knowing you're not the only person with a pile of unanswered questions.

good luck and don't get tired of pestering your GP for an appointment with consultant and eye test

Wig
 
littlesis said:
Hi,

I have not seen the specialist and not even been given an appointment date so maybe this is something i need to push for?
Click to expand...
yes definitely - insist on talking it through with someone who knows the condition well. A diabetes specialist nurse (DSN) may be as good or better than a consultant diabetologist.
As wigzaah said, make sure you get an eye specialist to look at your eyes soon too. You are entitled to get a range of medical tests/checks to help you keep healthy.
I found this which is from an american site but actually they say very similar things here, and it's presented in a quite useful easy to read way. You can print it off and ask your doc for a plan.
http://www.mainequalitycounts.org/hosp- ... klist.html
 
Hi Wig,

Thank you for the reply, as i have been diagnosed for some years now I already use the charity eye screening service so that is covered.

I did fill in the DVLA form today and it said have you had any periods of Hypo's i put yes although not for almost 8 months now, not sure if i should have put yes or no? I just hope it doesnt affect my license as i need a car for my job :(

The nurse had prescribed me 8mm needles but on seeing me said i was too slim for them but didn't change them, i am finding it a little hard to inject and im covered in blood spots and my tummy gained a nice bruise from one injection, I am trying to do it how they showed me and im sure im doing it ok so maybe its the needles that are too big? They seem to hurt a lot more on my thigh area??

I know what you mean about treament being the main thing it's just i would like them to decide once and for all what I need to put on forms, etc, my nurse advised type one for forms as i am on insulin and she said she is 99% i am type one but after living for years being told i am type 2 i am left a little confussed!!

I have found (already) that this site can be a great support and it is the first time i have ever spoken to anyone else diabetic about my situation so it is such a relief to just be able to write down how I feel to people who actually understand :D

Thank you for taking the time to reply and as for your results?? my nurse is looking for 5-6 so i would have said your score at the lower end was great but then i am not a nurse lol :wink:

Littlesis
 
THe important thing isn't whether you are type 1 , 1.5, 2 etc, but what ever type you are is that you are given all the help to get 'd' under control.

There are now 4mm needles for insulin which you can get...., my gp used to prescribe mine (now on a pump) and would give me whatever length I wanted-providing they fitted the pen I had....my DSN at my hospital is great at giving people what they need to help their diabetes...no matter what type you are!!!!

With levels at 5 or 6 to try and achieve when first going on to MDI, I believe that you will run the risk of going hypo...for example on a daily basis..I count 5 as bottom line to drive...but prefer to between 6 and 8....make sure when you drive you have a ready supply of some sort of glucose to help you should your levels drop... If you have been having higher hba1c's-best to bring them down gradually and safely....

If you work, then personally I would advise that you tell your employer that you are now using insulin...you are covered under the DDA, but to be fair to them to meet the DDA-they would need to know that you are having insulin.....

I wouldn't worry too much about what type you are...just getting the treatment that works for you is the best thing to concern yourself about at the moment....
 
Hi,

Thanks for the reply.

I work for myself so not too much of a problem :)

My bloods are mainly around 16 after a week on insulin but thats down from as high as 27 in the last few weeks so getting there slowly, my nurse said we will continue to increase slowly to avoid hypos, we have increased 4 times now and last night at 3am the background insuline finally worked with a reading 0f 6.8!! but then at 9am this morning back to 15.6 so not sure what she will suggest needs altering as i do getting very anxious about having a hypo while asleep :|

Thank you so much for taking the time to reply, i really do appreciate it :)

Littlesis
 
They won't want your level coming down to quick because your body has adjusted to working with higher levels, so to drop them too fast will give make you feel awful and give a lot of phantom hypo's symptoms as the body strauggles to reajust to normal levels again.

Also with dropping levels too quickly is that it can cause bleeding of the small viens in the eyes, or even start of some complications suffered by a diabetc.. So a slower return is can be safer in the long run..

Concerning your driving licence, it's disbilitating hypo's where you've needed 3rd party intervention and/or hypo unawearness they are looking for.. either of these two will cost you your licence..

So if they ask about hypo's if you've picked them up so you are totally aware when one starts so you are able to treat yourself then fine to say no..

But if you have hypo's that you've been unware they are coming on or the level at which you pick them up means that you are likely to need 3rd party intervention then it's a yes..

Keep in mind for your saftey and that of others..

That when you are going to drive to check your Blood glucose first and keep a supply of hypo treatment/sweets in the car at all times..

Until I got my pump I had several factors when deciding if my BG was suitable for driving, some were just the general advise given..

One thing I did do, was to work out what my BG did while driving, so would test at the begining and end of a journey, this enable me to make a better judgement to what my BG should be at the begining of a journey, and if I did or didn't require a little boast to achieve, even now I regularly double check with intermitant checking at the end of the journey, so that I have a good idea about the reaction of my BG's..
 
hi littlesis

i don;t know what the rules are with what you tell the DVLA in respect of hypos but i take a common sense approach and agree with jopar - if you recognise the hypo coming on and are able to deal with it yourself i don;t see any need to tell them because you're not a danger to yourself or other road users, it's only if you become disabled by a hypo that you present a potential danger to yourself / others. if you don't have disabling hypos which given your readings would seem unlikely i would be writing to them saying that you want to clarify the position regarding hypos and explain it's been months since you had a hypo at all, you are aware when one is coming on and always have sweets / sugary drinks to hand to deal with it. obviously you should never mislead them as to the situation though.

regarding the needles you have my sympathy. i have (unfortunately) plenty of flab to inject into which should make it easier but my tummy and bottom/thigh areas are permanently covered in bruises and i look like a pin cushion because the injection sites even if they don't bruise leave little red marks which i find embarrassing in the showers / swimming baths. it sounds though that although i have the bruises / marks i don't suffer generally with pain as i can pinch the skin which helps deaden the nerves briefly. sounds like you should really be on the 4mm needles.

what i do note from reading about people's experiences here is how much difference there is in the levels of care offered. my dsn was incredible, i would never have got anywhere without the amazing levels of help and support made available to me. contrast that with your nurse who tells you you're too slim for 8mm needles and then does nothing about it! i just can't believe how poor that is. when you contact your GP about an appointment with a consultant i would raise that as well. it's a pants condition to live with without additional problems that aren't necessary e.g. a more suitable sized needle for you. even if they said for some reason the 4mm needle isn't suitable for you at least you would know and it's one less thing to have on your mind.

i'd be interested to know how you get on with getting an appointment with a consultant, it sounds like the level of care offered is low. also i'd be interested to know how you get on with the 4mm needles if you get to try them out. i hope you do because i feel everyone should have access to the most suitable treatment for them to keep the condition under control. if you look at it in economic terms it surely must be cheaper for the NHS to help people control their diabetes early and avoid later complications than have to treat those later complications.

please keep us updated with your progress and as always good luck

Wig
 
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