Misdiagnosed for 4 years

[StaceyEmma]

Hi there I’m Stacey nearly 30.
For the last 4 years I thought I was type 2 after going to the drs recently due to bad guts on a constant bases the idea was to get off metaformin and onto gliczimide (sp?). My current surgery is not where I was originally diagnosed so my current GP looks back through my notes and finds my previous surgery we’re thinking about doing the antibodies test along side another one which they never did!
So current GP did them and results came back without a fraction of a doubt I am type one but still producing some of my own insulin. Got started on one slow release insulin only 4 units. Went to the hospital for the consultation with the specialists they changed my slow release to a different type and at 5 units (not a lot I know) along side quick acting at meal times. (Only onto day three of the regime) I’m finding before lunch I’m borderline hypo then post food I’m borderline keto levels same on an evening.
My injection sites are itchy and red but only on one thigh. Having intermittent blurry vision and I’m close to tears all the time. Are these three things common? Seeing the nurse practitioner this morning but just feel I need advice from people who have gone through it as well.

Thanks in advance

 

[Brunneria]

Hi and welcome @StaceyEmma

I am sorry you are going through this, it must be quite an adjustment!

I will tag in some experienced type 1s, with plenty of experience of insulin, who may be able to offer some support.

@Jaylee @Juicyj @Fairygodmother @becca59

 

[StaceyEmma]

Hi and welcome @StaceyEmma

I am sorry you are going through this, it must be quite an adjustment!

I will tag in some experienced type 1s, with plenty of experience of insulin, who may be able to offer some support.

@Jaylee @Juicyj @Fairygodmother @becca59

It’s definitely am adjustment but I’m not adjusting well and on top of it all worrying about going back to work and knowing when I’m ready to do that.

 

[Mad76]

Hi
Im same as you. Misdiagnosed ad type 2. But my misdiagnosis only lasted a couole of weeks before i got very ill and they then doagnosed me as type 1.
This was about 6 weeks ago. So.its all quite new to me too. I also felt (and still sometimes) very tearful and upset
It was a massive shock. My eyesight was very blurry by then
.happy to report much less so now. Still not perfect but much better. The doc and nurse assure me it will correct itself.

Good luck with it all, ive found reading and asking questions on here. On the type 1 section super helpful

 

[Fairygodmother]

Hi @StaceyEmma, after four years of the wrong treatment it should all begin to get better for you now. I say begin to as at this stage the med team will need to know how you respond to the doses of insulin you’re on at the moment before they can make any fine tuning.
It’ll help them if you can keep a record of your blood sugars, what you ate and the amount you injected. Something like Carbs and Cals, or the information on packets of foods, together with a set of scales that weighs grams, will help you do this accurately. Assessing carbs and insulin needs is a way of life for those of us with T1 and it becomes second nature even though it seems like a real chore to begin with. Maybe you’ve already been given a printed chart to do this with? There’s a simple printable one here if you haven’t.
https://www.google.co.uk/amp/s/integrateddiabetes.com/diabetic-logsheets/amp/
I’m not surprised you’re feeling tearful, lower blood sugars than your body’s used to will make you feel like this and the shock of having to adjust after what sounds like four difficult years will possibly do this too. So hug.
Maybe avoid any sites that get red and itchy? We don’t have to be martyrs. And carry some glucotabs and jelly babies with you at all times to treat lows.
The blurry vision might be due to a change in your blood sugar levels, I find that being too low or too high can change my vision too. I don’t know what your levels were like on the previous meds, but if you’re worried it might be a good idea to book an optician appointment. Tell them that you’re T1, take evidence if you have some - as you should, as a T1, get optician treatment free if you’re in the U.K.
And welcome to a very exclusive, supportive club.

 

[Juicyj]

Hi @StaceyEmma Thank goodness they have finally found out what's going on with you, that's the huge positive. As a forum we cannot give you advice about what doses to take, we are all unique in our requirements, however borderline low suggests your taking too much insulin so you need to review with your DSN this morning, they will manage this with you for the time being, however in time you will learn to adjust your own doses, but that will come with greater knowledge . Blurry vision is typical once blood glucose levels become more controlled and will wear off, in regards to injecting, find a good spot with a bit of fat, pinch and inch and inject to 10, it shouldn't sting if the insulin is at room temperature or at least not much.

Get yourself a copy of 'think like a pancreas' excellent reading to get your head round things

 

[EllieM]

My injection sites are itchy and red but only on one thigh.

Not familiar with that but the nurse should set you right

Having intermittent blurry vision

Very very common when blood sugars have been too high and are restored to normal levels

I’m close to tears all the time.

Very understandable with the unexpected misdiagnosis. Unfortunately in a recent news report it was noted that some 38% of T1s diagnosed as adults were initially misdiagnosed as T2.

OK, here's the good news. Your body isn't carbohydrate intolerant (like T2s) it's just that it can't produce enough insulin to keep you going. That means that you will end up having much more freedom in your diet than a T2 (some T1s choose to go low carb because they prefer to have less insulin but that's your choice), once you've learnt how to adjust your insulin for your carbs. And as a T1 you should get much better care from the NHS.

And once you're on insulin that's it, no progressing to more and more exotic medications, as your body is finally getting the medication it needs. Yes, it'll be a culture shock getting used to insulin, testing and carb counting, but once you've done that you should find you feel much better. (Remember you've had 4 years on the wrong medication.)

My only advice would be careful of hypos and have some glucose tablets (fruit pastilles. or whatever) to hand at all times.

Good luck. You can do this, (Plus the technology available for T1s is improving all the time, so you may well have a cure, or at least a functioning artificial pancreas, in your lifetime. )

 

[StaceyEmma]

The Dietian was happy with my day to day diet when I saw her at hospital the other day but things get more complicated in regards to insulin and carbs as I’m still producing 1500 ish of my own according to the results for the blood tests. So the consultant, nurse and Dietian don’t want me on a high dose until I need to but tested this morning when I got up before I had food and injections at 5.4 two wetabix and two hours later and I’m down to 5.2 that’s on 5 units of deludec and 2 units of novo rapid. I always have glucose tablets on my persons just incase. Can’t have jelly beans (pork allergies) normally have some full fat coke in my car too but I’m currently out so need more. I’m due my annual eye screening just need to have confirmation that my sick notes being extended and book it for while I’m still off work.

 

[Fairygodmother]

The Dietian was happy with my day to day diet when I saw her at hospital the other day but things get more complicated in regards to insulin and carbs as I’m still producing 1500 ish of my own according to the results for the blood tests. So the consultant, nurse and Dietian don’t want me on a high dose until I need to but tested this morning when I got up before I had food and injections at 5.4 two wetabix and two hours later and I’m down to 5.2 that’s on 5 units of deludec and 2 units of novo rapid. I always have glucose tablets on my persons just incase. Can’t have jelly beans (pork allergies) normally have some full fat coke in my car too but I’m currently out so need more. I’m due my annual eye screening just need to have confirmation that my sick notes being extended and book it for while I’m still off work.

Very good idea to get your sick note extended! It takes a bit of getting used to and you need time.
Those breakfast bloods sound very good too. It sounds as though you’re ready to get to grips with this T1 passenger and apparently the long term prognosis for someone like you who’s still making a bit of their own insulin is good

 

[StaceyEmma]

Very good idea to get your sick note extended! It takes a bit of getting used to and you need time.
Those breakfast bloods sound very good too. It sounds as though you’re ready to get to grips with this T1 passenger and apparently the long term prognosis for someone like you who’s still making a bit of their own insulin is good

The Diabetic nurse was very shocked at my levels considering I’ve been diabetic for 4 years she said the honeymoon period is normally only about a year.
I know everyone gets to grips in their own time but already been off work 6 weeks two of which were to get used to the glicazmide side effects before I found out I’m a T1. So a little worried about work too can they dismiss me for being off long term for diabetes?

 

[Fairygodmother]

The Diabetic nurse was very shocked at my levels considering I’ve been diabetic for 4 years she said the honeymoon period is normally only about a year.
I know everyone gets to grips in their own time but already been off work 6 weeks two of which were to get used to the glicazmide side effects before I found out I’m a T1. So a little worried about work too can they dismiss me for being off long term for diabetes?

The Equalities Act, which states that ‘reasonable adjustments’ should be made for people with disabilities, and T1 is a disability even if we don’t like to behave as if it is one, should protect you.
https://www.equalityhumanrights.com/en/equality-act/protected-characteristics

 

[StaceyEmma]

Thanks that ms fabulous one less worry

 

[Marie 2]

The honeymoon phase in a LADA can last 8 years, probably even longer in some people.

 

[StaceyEmma]

Well been and saw the nurse. She got my regular gp in to check the red at my injection sites and they both think I injected a little too low but weren’t concerned.
As to the constant near tears the nurse agreed with previous comments on here that it’s just due to having a huge life change happen she hopes it will ease off once I get into a better and more established regime.
Sick note has been extended to next job after lunch book my eye screening appointment for during the period I am off.

 

[LooperCat]

Hi, and welcome! I can’t really add much to the advice already given, but was interested to see you have a pork allergy! I’m spectacularly allergic to it myself and I’ve never come across anyone else who is.

 

[StaceyEmma]

Hi, and welcome! I can’t really add much to the advice already given, but was interested to see you have a pork allergy! I’m spectacularly allergic to it myself and I’ve never come across anyone else who is.

No Ive not come across anyone else either. But sick of always getting the what you can’t have bacon comments when I mention it.

 

[LooperCat]

No Ive not come across anyone else either. But sick of always getting the what you can’t have bacon comments when I mention it.

Same! I’m also allergic to dairy, so I get the cheese comments on top! What kind of symptoms do you get? I get breathing difficulties, which is always fun...

 

[StaceyEmma]

Same! I’m also allergic to dairy, so I get the cheese comments on top! What kind of symptoms do you get? I get breathing difficulties, which is always fun...

Mine is just stomach related, vomiting and very bad guts

 

[Severe_Needle_phobia]

Hi there I’m Stacey nearly 30.
For the last 4 years I thought I was type 2 after going to the drs recently due to bad guts on a constant bases the idea was to get off metaformin and onto gliczimide (sp?). My current surgery is not where I was originally diagnosed so my current GP looks back through my notes and finds my previous surgery we’re thinking about doing the antibodies test along side another one which they never did!
So current GP did them and results came back without a fraction of a doubt I am type one but still producing some of my own insulin. Got started on one slow release insulin only 4 units. Went to the hospital for the consultation with the specialists they changed my slow release to a different type and at 5 units (not a lot I know) along side quick acting at meal times. (Only onto day three of the regime) I’m finding before lunch I’m borderline hypo then post food I’m borderline keto levels same on an evening.
My injection sites are itchy and red but only on one thigh. Having intermittent blurry vision and I’m close to tears all the time. Are these three things common? Seeing the nurse practitioner this morning but just feel I need advice from people who have gone through it as well.

Thanks in advance

Hi StaceyEmma just wishing you well on your journey .

 

[StaceyEmma]

Hi StaceyEmma just wishing you well on your journey .

Thank you. I’m hoping it gets easier once I’ve got my head around it.