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Newly diagnosed type 1

M

Mark.96

Member
Messages
13
Type of diabetes
Type 1
Treatment type
Insulin
Hi, I recently got diagnosed with type 1 diabetes flowing me going into hospital after calling 111, with having symptoms of thirst, breathing heavily, and being tired. Never expected it to be this, but after I was seen, the doctor tested my blood sugar level and it was 23.4, which then they checked my ketones which was 6.7, at the time I didn’t know what was going on but I got rushed off and put on a drip and pumped with insulin. It was A hard couple of day, with me being on the machine for 3 days straight. On the 4th day I was given my own insulin pens to check with different units, to get the right level for me. At the time of leveling hospital, I was on Levemir 30 units day and night and novo rapid 22 units. I felt the best I have in a while, but after my appointment with the dietician, they said that my blood sugar levels were great, as it hasn’t went above said due to me having a real scare and watching what I eat. However, they said that my levels are too low sometimes too they cut down the units on my novo rapid to 18 so make it go a bit higher as I was close to 4 and even sometimes below. I have then lowered it to 14-16 units depending where it is before each meal. Here’s my question should I lower my Levemir or keep that the same, I will ask on my next appointment but that the end of May.
 
Welcome @Mark.96 I second Knikki's suggestion that you fill in your personal info because there is a world of difference between T1 and T2 - each has its own problems and solutions and those that are perfect for one won't necessarily apply to the other. There are a lot of very well meaning, kind T2's on the board, who are extremely helpful but if they advise you thinking you are T2 you won't be getting the advice you need to hear....
 
I know this question is probably stupid, but have been reading article about people that have type 1 diabetes often get misdiagnosed as type 2 at first. I was wondering if that could also happen the other way around, as I do have more weight then I should, and after the scare I am trying to fix that. But everyone thought I have type 2, but when I found out it was type 1 I still cant shake the feeling that what if its type 2.
 
Hi, @Mark.96,
Diagnosis can be traumatic as you have described.
Reading up on T1D, you have seen that the your symtoms ( thirst etc) and signs/tests - high blood sugar levels (BSLs,) high ketone levels, are classic for T1D.
Reading up on T2D you may note that whilst BSLs at diagnosis can be high, that ketones are nit ( unless there gas been that mix up of being diagnosed T2 mistakenly.
Some of us are underweight when diagnosed, some normal some overweight ( but maybe some loss of weight as we got more unwell but not to normal or low weight levels.
And now on insulin and trying to balance out food intake vs insulin dose you may gain weight initially - if my experience is anything to go by. Adjustments you make in cinjunction with your team can help deal with that, if it happens ¡!
Keeping in touch with your health team by phone until your next appointment can help you with making furhter adjustments to your insulin doses.
Many of us find we need a bit more insulin per carbohydrates ( any form of sugar e.g. Bread, cereal, fruit, Milk etc) for breakfast than for later meals in the day but you may or may not find that.
For your May appointment may be ask them about the pros and cons of splitting your Levemir dose between one amount in morning the other a night - just so you have that option explained as a possibility if needed in the future.
I hope you have received some education about hypoglycaemia ?
Hypo- = low, -glyc = glucose (sugar), -aemia = in the blood, we call it 'hypo' for short. There is also a description about hypoglycaemia under ' Type 1' on the Home page - from this you can also see about to manage hypo's and it is important that your family and friends know about hypos- how to recognise them and what to do if you seem to be experiencing one.
Please keep asking questions as you go and also, if you have time perhaps look up on the Home page, question box upper right - DCCT - there are two results - dcct can refer to blood test measurements - ignore that one and look at the trial DCCT - Diabetes Control and Complications Trial - and ask your health team about that also.
Best Wishes !:):):)
 
Hello and welcome to the forum that nobody really wants to join.
As other's have said I would ask about getting tests to confirm a diagnosis.
I have a female friend, who was in her 50's when diagnosed with type 2, one day when she was out she felt very ill and her eyesight was very blurred too, so she was panicking and rang her partner, She was trying to lose some weight, but has other medical/health conditions too, including heart problems.
Good luck and wishing you all the best, it will get a little easier in time.
 
Thank you so much for the advice, I think I am still trying to get to grips with it and just need to face the facts that the doctors would of done test when I was in hospital as I had my blood taken 2 times a day when I was in hospital. So I just need to come to grips that it is type 1 and need to look forward. I will definitely ask the dietitian about my Levemir dose the next time I go, still waiting on a letter though. But thank you so much for the kind welcoming and the advice I have been given.
 
Mark.96 said:
Thank you so much for the advice, I think I am still trying to get to grips with it and just need to face the facts that the doctors would of done test when I was in hospital as I had my blood taken 2 times a day when I was in hospital. So I just need to come to grips that it is type 1 and need to look forward. I will definitely ask the dietitian about my Levemir dose the next time I go, still waiting on a letter though. But thank you so much for the kind welcoming and the advice I have been given.
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Hi Mark, I wouldn't assume that the Drs would have done any particular tests specifically to determine type 1 whilst you were in hospital. I too ended up in hospital where half the Drs said type 2 (due to age alone) and the other half said type 1 (due to presentation and the fact I didn't have ANY other supposedly type 2 traits). I came out of hospital on insulin and in the months that followed they were still um'ing and ah'ing. After about 2 months and after me constantly asking 'Are you sure'?, they finally did a GAD (antibody) test and a C Peptide test. Both confirmed type 1 but without those two tests how would anyone have known? Please make sure you ask your Consultant HOW they came to the conclusion it was type 1 because they do not always do all of the tests that may help determine. x
 
I decided to read my discharge letter to see what it actually says and it does say at the bottom C-Peptide, GAT and Ielet cell antibodies sent, will be reviewed at OP F/U.
 
Mark.96 said:
I decided to read my discharge letter to see what it actually says and it does say at the bottom C-Peptide, GAT and Ielet cell antibodies sent, will be reviewed at OP F/U.
Click to expand...

Ah, that's really good then Mark, hopefully the results will soon be back but if you google both tests you will see that even they are not straightforward in isolation. Good luck.
 
Has anyone else had problems with blood sugars always being low, I have decreased the novo rapid units from 22 when I came home from the hospital to now taking 12, still stays around 4 at evening meal times.

Sorry for asking so many questions
 
Last edited:
KK123 said:
Both confirmed type 1 but without those two tests how would anyone have known?
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The hospital I attend publishes its c-pep testing protocol:

http://www.edinburghdiabetes.com/diabetes-protocols

It's surprisingly complex, with bits in bold font saying it's a screening test, not diagnostic, and if used within 3 yrs of dx it can give misleading results because many recently dx'd T1s still produce a fair amount of honeymoon insulin and c-pep.
 
Hi again @Mark.96, sounds like you are getting the hang of adjusting doses. Keep in touch with your health geam via phone and they can help confirm what else you need to adjust.
My general rule is that if my BSL is lowish when i wake in the morning that reflects what my long-acting insulin ( like your Levemir) is doing.
It is why in the past i was advised to split mine into a dose at breakfast and anither about 10 pm, but you need from your diabetes nurse or doctor to work out how much, if that is what they advise.
Best Wishes !!:):):)
 
Scott-C said:
The hospital I attend publishes its c-pep testing protocol:

http://www.edinburghdiabetes.com/diabetes-protocols

It's surprisingly complex, with bits in bold font saying it's a screening test, not diagnostic, and if used within 3 yrs of dx it can give misleading results because many recently dx'd T1s still produce a fair amount of honeymoon insulin and c-pep.
Click to expand...

Yes, in the Type 1 management guidelines for Health authorities, it says not to do the tests within 6 months of diagnosis for just that reason.
 
Scott-C said:
The hospital I attend publishes its c-pep testing protocol:

http://www.edinburghdiabetes.com/diabetes-protocols

It's surprisingly complex, with bits in bold font saying it's a screening test, not diagnostic, and if used within 3 yrs of dx it can give misleading results because many recently dx'd T1s still produce a fair amount of honeymoon insulin and c-pep.
Click to expand...
Honeymoon insulin - that is a great term @Scott-C . You should patent it !
 
@kitedoc Im currently taking 30 units of Levemir morning and night so that 60 units for a full day, was scared to touch that, hence why I have been just doing the novo rapid. Thanks for links @Scott-C @becca59 :)
 
Hi. A few things ref the insulins. Getting the Basal (Levemir) right involves adjusting it so that it 'matches' the 24/7 background liver's output of glucose. It's not super critical. My nurse said to have a morning BS level between 5 & 7. You can also see how your BS goes after a good few hours fasting as it should remain stable. Personally I rely on the morning result between 5 & 7 which also seems to get the balance right for me. Shortly your nurse should explain carb-counting where you adjust your Bolus (NovoRapid) to match your meal time carbs. Most of us are started on a ratio of 1 unit of Bolus to 10gm of carb. Do ask your nurse to get you started on carb-counting when you feel ready. For some reason the NHS seems to delay guiding patients on this. My nurse taught me in 15 minutes when I started insulin and gave me a leaflet with typical food portions/carbs. Carb-counting gives the best control and importantly minimises the risk of hypos when the ratio is right for you. I think my nurse saw me as a bit of a geek who could cope! It's good that you are having C-peptide and GAD tests. Yes, the c-peptide can give an unreliable reading if you are a T1 still in the honeymoon period where the beta cells are still failing; but it's a good guide i.e. if it's low it means T1 and if it's high it means T2. The GAD can also be unreliable and if it's negative it doesn't mean you aren't T1 as viruses can result in beta cell death as well as antibodies. Complicated isn't it but at least initially be guided by your nurse/consultant.
 
Hi, Thanks for the advice, The dietitian touched on carb counting, but I said I wanted to just get used to the insulin doses first and come back to it at my next appointment (which should be the end of may) as I felt that I didn't want to overwhelm myself with all this new stuff and I wanted to do it bit by bit. So is it common to get diagnosed with type 1 and then when they get the test results back to then be diagnosed with another form like type 2, or would they need to be 90% sure that it was type 1 before they would diagnosed me with it.
 
Hi again. It's very unusual to be given a T1 diagnosis and then for that to be changed to T2. I think I've seen it only once or twice on this forum. The BS and ketones indicate you are T1 and unless you have a lot of excess weight and hence insulin resistance then T2 is unlikely. The problem the other way round is that many GPs (like mine) still believe T1 is a condition of childhood and hence wrongly assign you as a T2 without any tests etc. If you get near to the point of DKA and end-up in hospital then T1 becomes the correct diagnosis.
 
Hi again, I am overweight, which this is why I thought it could be type 2 but from what I have heard off the links I have been given, you can get type 1 whether your overweight or not, the same with type 2. I agree with the Ketones, as they were over 6 The doctors said DKA so everything points to it being type 1, but no one really know I guess until I get the test results back. I do remember I think them taking my blood before they put me on any insulin drip, so I think that was the test for it as I have read that the test needed to be done before any treatment was done but I don't know for certain, as I didn't really know what was going on I was very confused and kind of any a drunk like state, which I found odd and a result from my ketones being so high.
 
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