advice probably type 1

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emma1972

emma1972

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Relationship to Diabetes
Type 1
Hi

Am new to the site the doctor has told me I have diabetes but am having to wait 2 weeks for GTT. Am really scared meantime and don't know how to control blood glucose as doctor says I am probably not producing any insulin.

I am a 35year old female, 5ft 7 weighing 9 stone. Over the last few months the symptoms have accelerated and I had a raging thirst which was never satiated and I lost 2 stone. I had been on thyroxine so I assumed at first that this was kicking in although I was never overweight. I am reasonably active by virtue of my job and although I drank more alcohol then I should my diet was fine.
Apart from this raging thirst I was never tired and always full of energy. At the doctors my urine analysis showed lots of ketones and the urinary glucose stick was off the scale. I produced a fasting glucose of 24.7mmol. I am told that is unlikely I can control this with diet. True over the last week the lowest it has been after 18 hrs without food was 19mmol.

My concern is that I have to wait 2 weeks for the tolerance test and if the fasting is at 24 what on earth is the final one gonna be. They will load me up with glucose and then let me leave with no way of processing the sugar which will be extremely high. Can this test be dangerous. Given my results do I need this test. Am I gonna be type 1?

Emma
 
hi emma, i cant say for sure you are gonna be type 1 but i would make an educated guess that you probably are, i was admitted to hospital with a reading of above 30, a fasting the next day of 16 but that was probably inacurate as they left me water beside my bed and and what with a raging thirst i couldnt resist. however i was showing only a trace of ketones so they discharged me the next day with tablets and a tester, 2 weeks on tablets and i couldnt eat anything without spiking into the 20's so they decided that i was type 1 not type 2 and put me on insulin (family history of type 1) i have not had a glucose tolerance test and my longterm blood at admision was only 8.5, which they told me yesterday that it may have been inaccurate. if im honest if my eyesight had not suffered as it did (down to around 2 feet in a week) i would have plodded on regardless, luckly mum is diabetic and i tested occasionally and it was her that forced me to go to hospital. high sugars do damage your health but only if its longterm, a few weeks althought detrimental is not as bad as being misdiagnosed and letting them run high for months.....there is good advice and good people on this site so im sure someone can advise you better than i can...welcome...:D

p.s i too am on thyroxine and thought my dose was needing adjusted, which it turned out it did, docs thought maybe one condition was masking the other...:D
 
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Hi, Emma -

I was misdiagnosed for two years (Type 2 when I was really slow-onset Type 1) so I wouldn't worry too much about the next two weeks. If you are feeling really unwelll, though, make a nuisance of yourself at your doctor's surgery or hospital. Unfortunately, that's the only way to get the NHS to move quickly sometimes.
 
Wow never expected advice so quickly and great advice too. I just hope the load that they give me during the GTT doesn't send me over the edge. I have google overload and have no idea what I am doing. Thinking of eating all the chocolate in the house (can't bear to see it go to waste), just kidding. I am really peed off as I have no family history at all of any type of diabetes and can't help thinking it is autoimmune problems as my thyroid is hashimotos and i also have mild vitiligo. my father has autoimmune problems too. Not keen on the insulin injection idea, does anyone have that inhaler? does it work?
Think I need to calm down, getting ahead of myself. May be a slight chance of type 2 if Im lucky. If type 1 DVLA will take my bus licence away from me and thats my retirement nest egg stuffed! My current role will also have to be modified...really really narked.

I have total respect for all diabetes sufferers now, never really gave it much thought before. My mother inlaw is type 2 diabetic and abuses her body. She eats constantly and always cakes sweets e.t.c she always runs high and has been hospitalised several times. She takes so many tablets for blood pressure and leg ulcers that she rattles. She is morbidly obese and needs a disability scooter to get about yet she refuses to change her ways. She is now on 5 insulin injections per day.
I do not want to end up like that so I am lucky that I have that example to keep me on the straight and narrow. I can't talk to he cos all she does is lectures me on what I should be doing but I find it difficult to understand as she keeps talking about food exchanges e.t.c.

Hope people don't mind me going on about it, its just that I need to off load to someone who understands.

Thanks

Emma
 
they wont nessesarily take your license away for good, they will probably take it away for a while but if you show good control there is no reason that you wont get it back, all be it a pain in the arse meantime and will involve a indepth medical. i was terrified of needles and i mean terrified used to say to mum i think i would reather die than have to do that everyday but low and behold now i have to and it really aint that bad, it is difficult i can tell you that i know from what little experience i have had but its not the end of the world. sorry to hear your mum in law doesnt give this disease the respect it deserves but she is a worst case senario, it doesnt have to be like that with a little self dicipline and a few lifestyle changes it is a managable condition. there will be times when it all gets on top of you (well it did for me) but it can only get better..chin up..:D
 
Hi Emma

I'm also 35 and was diagnosed type 2 in April was a little over weight to start with and now lost 3 stone and counting - the GP & Specialist where unsure at first as to which I was and I went 4 weeks before being started on medication. Your not over weight, but try to cut out all sugar and reduce your fat sat intake to next to nothing. My blood sugar was 23 when I was first tested and went down to 13 (my mum is diabetic and did it for me) within a week.

Try not to panic and try to relax (I know easier said than done). Have a good read of the diabetesuk website it is full of lots of useful info.

You need to focus on yourself and getting yourself fit, well and healthy (you can be just as healthy as the next person even with diabetes) and try not to think about your inlaw and how she is not really looking after herself. My Grandma and Mother are both diabetic and don't do what they should for themselves and it makes me even more determined to ensure I look after myself.

If you want any help, info or someone to talk to feel free to contact me xx
 
Hi Emma

You should not be waiting for gtt-A random blood glucose of over 11 on 2 subsequent days is a definitive diagnosis of diabetes. A GTT should only be used if there is some uncertainty (i.e. a random blood glucose between 5.55-11) this is according to the World Health Organisations diagnositc criteria for diabetes. Whether you are type one or type 2 is diagnosed mainly of your symptoms and how quickly they came on. If you have ketones the likihood is you have type one and i cannot advise you strongly enough to go back to the doctors today or tommorrow, see another GP or the nurse and if you get no joy (in the from of diagnosis and treatment) take yourself down to the walk in centre or A+E immediately. There is no point waiting for a GTT as your blood glucose is pretty definative and if you have ketones now, by 2 weeks time you could be very poorly indeed.
I'm really sorry and dont want to scare you but you cannot sit on this.
Please let us know how you get on
 
Hi Emma

I think the inhaler stopped being produced for some reason, so the choices are injections or pump if you are diagnosed with type 1. I don't think the type 2s here would like being described as "lucky" lol! I think there are challenges to both and all types of diabetes, they are different challenges and can't really be compared to say one type is better or easier. For example, type 2s have a stricter diet sometimes if that is the way they control their diabetes, and they are not on tablets or insulin.

Here - http://diabetes.org.uk/en/About_us/...ving-discrimination-for-people-with-diabetes/ - is some information about driving from the Diabetes UK site.

The food exchange thing is not scary once you are used to it. Basically if you are on insulin, one approach is to use a ratio system of carbohydrates to insulin units. In order to find out what ratio you are on you need to experiment a little under the supervision of your medical team. Once you know your ratio, it is easier to know how many carbs you should eat and how much insulin to use to compensate for high sugars, or how much to reduce the insulin by if you are planning to exercise, for example. If you are diagnosed with type 1 you will still be able to eat choccy in moderation and if you take the right amount of insulin so no need to eat it all now.

I won't lie to you, it is tough, you need to be constantly on alert and monitoring yourself especially at first until you get more confident. But once you have got the basic hang of it it gets a little easier. The injections may seem intimidating but the needles are really small and fine and doing it yourself is different from being injected by someone else. I am really squeamish about watching injections on TV or about others injecting me (it took about ten minutes at the dentist when I had my wisdom tooth out for me to let him jab my mouth with the anaesthetic) but if I am injecting I just stick it straight in without a thought. After a while it is just routine like brushing your teeth. The nurses do prepare you very well for injecting, I remember injecting oranges to practise! The psychological elements can be harder to deal with but you are really well prepared, you have looked it all up online and already joined us here so that's great.
 
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Hi Lizzie

My apologies if I offended anyone, I just meant that I would consider myself lucky if I had type 2 diabetes controlled by tablets or diet. I am an emergency services worker and type 1 diabetes has to be notified to my employer and I would not be able to continue my current role as per their policy. I would also have to notify DVLA and it is the current position where they revoke all classes of driving licence except cat A and B which would also affect my employment. If I am diagnosed as type 2 I do not have to notify anyone and my employment and driving status is unaffected. Merely thinking out loud, I dont believe for one minute that type 2 is lucky, but for my personal circumstances its what I pray for.
Have phoned the doctor again and they will not budge on the appointment saying if Ive managed this long another two weeks won't make much difference! To be fair I haven't had a days illness in about three years, don't even catch colds and I feel fine. If I do start feeling ill I will go to A+E but have taken on board advice and will cut out most carbs and sugar until I can get some treatment.

Thanks again for all your help.
 
Emma, Lizzie

Just want to say that whether we are Type 1 or Type 2, it doesn't seem to me that any of us is lucky with our diagnosis. As a Type 2, I might envy the flexibility of diet that comes with some insulin regimes for Type 1s but I don't envy the injections and the extreme hypos that some Type 1s appear to get. To me the 11 pills a day that I can put into my dosette boxes on a Sunday morning for the whole week seems a lot easier than insulin injections, pens or pumps - but that is probably what I'm used to - Lizzie, you seem so sensible about the whole thing

Like Dizzydi and Emma, I have family members and friends with Type 2 who do not take their it seriously. That has to be their choice but I find I write that through gritted teeth partly because it does help the two myths grow that (a) type 2 is somehow a mild form of diabetes and (b) its all your own fault. Even worse, didn't help my husband to understand why I decided to try to be very strict about what I eat at first - until we realised I already had some of the long term eye complications when I was diagnosed

Luckily this forum has introduced me to many Type 1s and Type 2s who do take responsibility for their own well being and who are so ready to share what has and has not worked for them. Makes the challenging times easier to cope with


Vanessa
 
I would be concerned about your having a OGTT, I think it could potenitially put you into DKA. With the high blood glucose and high ketones I think your doctor should have consulted directly with the hospital and got you seen that day. DKA is very dangerous and should be avoided.
Do you have a monitor to test? How are you readings now?
Welcome to the club nobody wants to join 🙂
 
Hi Emma
Your story sounds like exactly what happened to me. I went to the doctors on the 12th November with symptoms of raging thirst and peeing in the night, plus had lost about a stone in 2 weeks, not weight i needed to lose at all! My finger prick test was 23 and i had ketones in my urine but the doctor said i had to go for GTT. Soonest date i could get was 5th Dec (Today!).
You do not need this test! If I were you i would get yourself down to A&E so you can start getting treatment soon as possible.
In the end what happened to me was that I nearly fainted at work and got sent home. Luckily i have BUPA cover so I managed to get a GTT done within a few days, but I ended up having to go to hospital and was told that the GTT wasn't needed anyway!!
I dont want to scare you or anything but this is exactly what happened to me and I'm so angry that doctors dont know how to deal with this properly. I'd hate for you to get as ill as i did before i eventually got insulin.
Hope this helps and best of luck!
 
emma1972 said:
If I am diagnosed as type 2 I do not have to notify anyone and my employment and driving status is unaffected. Merely thinking out loud, I dont believe for one minute that type 2 is lucky, but for my personal circumstances its what I pray for.
QUOTE]

Hope things are sorted out soon. I know two weeks seems like a lifetime but it will pass quickly.

Read your info ref driving very carefully. If you are Type 2 without complications, it is very important that your insurers are notified even if you don't notify DVLA. Scottish branch of DUK told me of this.
Another point you must consider is the possibility of a hypo and therefore I have to check my bg before I set off and stop every 1/ 1.5 hours and do a retest. The stress of driving can in some cases use up much bg and before you realise it you are having a quiet snooze on the wrong side of the road.
Click to expand...
 
Guys

I appreciate all your help and support and especially to you Ally. I too have full BUPA cover and I contacted them and low and behold am in on Monday for a GTT but at the same GP???????.
Dont think I need the GTT either something that is of immediate concern to me just now, think all its gonna do is send me Hyper with a splitting headache and having to constantly pee for the next 24hrs to try and dump the glucose. Still hopefully this time next week I will be on some treatment and can be on the way to some form of normality again.

I was gonna be travelling the 640mile round trip at christmas to see my folks down south, but have had to cancel this just in case I am still trying to stabilise my glucose. On the up side they have decided to do the travelling to see me (first time in a blue moon), so its not all bad.

Thanks ever so much again, I will post my results just to let you know how I got on and I may need your advice again in the future if thats ok.

Emma
 
Hi Emma, just picked up on this and hope all works out but, like the other comments, I too feel you're most likely type 1. I recall the raging thirsts, sleepyness, weight loss when I was diagnosed 42 years back and how the GP put it down to 'child anxiety'. Knowing also how my brother was delayed in finding diagnosis i would advise you to contact the local hospital like their diabetes specialist nurse. I know it's comforting getting advise an dsupport from diabetics but having a chat with them will at least put you in touch with experts and reassure. I wouldn't myself wait until Monday, give them a call and see what they say.

Let us all know how you get on.

Pat
 
Hi Emma

I am 38 and was diagnosed with type 1 about 4 years ago. I have no previous family history although my Grandma is type 2. I had the same symptoms as you, i.e. thirst, regular peeing and weight loss. They started me on insulin straight away and i am surprised that they haven't done the same with you. I soon got used to the testing. I usually test on my forearm which i find is almost painless. The injections don't bother me. It does become your normal routine after a while and you adapt to it. I would be lying if i said i was happy being diabetic and it can be a pain on occasions, especially when you have a hypo or your glucose levels go too high, but you learn to live with it. If you are diagnosed as type 1 and start using insulin you may find that your glucose levels go up and down a lot at first but you should get the hang of it after a while.

Obviously it is early days but if i were to give you one piece of advice i would say look around to see if you can get on a DAFNE course. There is information about this on the web. It allows you more freedom and should give you better control.

Best wishes and don't worry!
 
Just to update you on whats been happening, I started throwing up on Thursday night and continued to Friday morning without reason. I went back to my GP who was another locum and she admitted me to the local hospital where a blood gas test showed I was suffering from Ketoacidosis due to high glucose levels. Well I have only just got out on day 5 having been hooked upto a 24 hour sliding scale monitor for 72 hours. Whilst in hospital I was on an insulin and saline combination and put on hourly checks. They were so busy that the nurse forgot to check and I ended up with a result of 2.2mmol in hypo. Was the most awful feeling. On the plus side I am now out and have my insulin injections 4 times a day, one slow acting one and three fast acting ones to take after meals to fit in with shifts. I am fortunate enough to have a good diabetic nurse who is very supportive and angry at the way I have been treated. There must be hundreds of sufferers with similar stories.
So I am now type 1, DVLA are revoking my PCV and LGV licences as we speak and my work don't seem to know what to do with me as they think I have some sort of fragile condition that will have me passing out every five minutes.
On the up side there a lots of people worse off than me and being in hospital for 5 days made me feel like a fraud when I saw all the really sick people on my ward.
Thanks for the support, and needless to say I didn't get the GTT!!!!!!
 
Hi Emma

Glad you're still in one piece (just!). How are you feeling?
Really sorry you're LGV and PCV liscences are being revoked, what will you do now?
Shaun the Kitemaster posted this link on another thread and its brilliant-its a little card you can stick up in work about diabetes etiquette, your work collegues would probably be grateful for the guidence
http://www.behavioraldiabetes.org/resources-diabetes-information-publications-etiquettecard.html
Keep coming on and letting us know how you're getting on
 
Emma sorry to hear you ended up in DKA. But glad you have your proper diagnosis and must be feeling better now you are out of hospital.

I must say i think your doctor is an idiot and if I were you would make a formal complaint. If us guys on here knew from the information you gave us that you were a type 1 and were at risk of DKA then your doctor should have. And could really have avoided the hospital stay.

Good to hear you have a good DSN, ask any questions here that you need to
 
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