Misdiagnosed for 4 years

[becca59]

Hi @StaceyEmma bit of a shock for you to be misdiagnosed for 4 years. I too was misdiagnosed but thankfully only a few days. Regards blurry vision, the insulin you are now on is obviously lowering your levels. This blurriness will pass. It is exceedingly annoying and was what I found to be the worst aspect of diagnosis. I am sure this is why you are feeling miserable. It was the thing that kept me off work for 3 weeks. Working in a school teaching was not conducive to being unable to focus.
The levels that you describe of 5 units may seem low to you, but I am only on 8, and have been diagnosed 5+ years. We all have different needs. Your Diabetic nurse says the honeymoon period only lasts 1 year. Again everyone is different. I believe every so often my pancreas kicks out some (unwanted) insulin and indeed my consultant concurred it can last in some many years. So take that comment at face value.
The injection sites I am sure will become better the more you inject. Take it you only have 4mm needles.
Lastly, it is early days, it has been a shock, but you will get there. And hopefully feel much better into the bargain

 

[Lynnzhealth]

I am so glad to read your story, but feel bad for you because I'm going through the same thing right now. I was diagnosed T2 in March 2017. My blood sugars started to rise this March and we couldn't figure out why, as I was slowly getting weaker. Last week I didn't eat for three days and finally on Friday I drove myself to our ER because I thought I'd be dead by Monday if I waited. The Specialists were scratching their heads because they couldn't understand what was happening. One doctor said my blood results were perfect for the past two years and I was doing everything right. I did NOT realize what a fog I was in until I started coming out of it (23.2). I was in a serious state of Diabetic Ketoacidosis (unbeknownst to myself). They said I did not present as a T2, but as a T1 and they were baffled because of my age (71). It can happen in younger folks, but very rarely at my age, so they told me. I am unique they said. I was in the hospital for 5 days and they kept telling me I was a very sick woman. They sent blood work away, however, it will be at least a month before we get the results. I actually scared the heck out of my siblings/cousin because they couldn't find me. They called the police and the police located me at the ER. After spending the last two years learning all about T2, now I have to do a sudden switch and learn about insulin, how and when to eat, check blood more often, eat to keep my sugars up (they've been as low as 2.1) since I got home. I have to get my Free Style Libre set up because I have to check so often. I, too, hope it gets easier once I get my head around it. Too much for an old lady!! I pray both of us will conquer this steep learning curve and go on to live a normal life.

 

[Scott-C]

Too much for an old lady!!

Heck, no, Lynnz, you Canadians can always manage anything!

Here's a short video about Eva Saxl: fled Europe during WW2 to Shanghai, insulin supplies were cut off when the Japanese invaded, so she and her husband Victor ended up making their own for her from water buffalo pancreata in a make-shift basement lab, saved her and several hundred others as well.

She went on to become an advocate for insulin supplies in 3rd world countries and didn't pop her clogs till about 80.

T1 is a tough gig at times, but whenever I'm feeling narked about it, I think about the upbeat "can do" attitude which Eva had - making her own insulin during a war? - and realise I'm pretty darned lucky.

You'll be fine - it's just another chapter in your life.

https://www.google.com/url?sa=t&sou...BMAZ6BAgLEBA&usg=AOvVaw0ok0OBVTZ8rQHrAZ3C5-9S

 

[Kittycat_7_]

Hi,
Wanted to wish you good luck on your journey, you'll get into a routine and hopefully start to feel much better.
Take care

 

[Lynnzhealth]

Heck, no, Lynnz, you Canadians can always manage anything!

Here's a short video about Eva Saxl: fled Europe during WW2 to Shanghai, insulin supplies were cut off when the Japanese invaded, so she and her husband Victor ended up making their own for her from water buffalo pancreata in a make-shift basement lab, saved her and several hundred others as well.

She went on to become an advocate for insulin supplies in 3rd world countries and didn't pop her clogs till about 80.

T1 is a tough gig at times, but whenever I'm feeling narked about it, I think about the upbeat "can do" attitude which Eva had - making her own insulin during a war? - and realise I'm pretty darned lucky.

You'll be fine - it's just another chapter in your life.

https://www.google.com/url?sa=t&source=web&rct=j&url=https://m.youtube.com/watch?v=xlOBl_nEits&ved=2ahUKEwjX2KqH7aXiAhW5XRUIHaQ9CdoQt9IBMAZ6BAgLEBA&usg=AOvVaw0ok0OBVTZ8rQHrAZ3C5-9S

You made me laugh, Scott. Yeah, you're right. We Canadians are a pretty hardy bunch. We'd have to be to live in all the snow we get. Thanks for the video. I'm sure it will be inspirational. My sister works in a senior's lodge in Alberta and she said some of her seniors have T1 and they are in their late 80s and 90s. If they can do it, then a youngster like me can do it!!! Have a great weekend.

 

[StaceyEmma]

I am so glad to read your story, but feel bad for you because I'm going through the same thing right now. I was diagnosed T2 in March 2017. My blood sugars started to rise this March and we couldn't figure out why, as I was slowly getting weaker. Last week I didn't eat for three days and finally on Friday I drove myself to our ER because I thought I'd be dead by Monday if I waited. The Specialists were scratching their heads because they couldn't understand what was happening. One doctor said my blood results were perfect for the past two years and I was doing everything right. I did NOT realize what a fog I was in until I started coming out of it (23.2). I was in a serious state of Diabetic Ketoacidosis (unbeknownst to myself). They said I did not present as a T2, but as a T1 and they were baffled because of my age (71). It can happen in younger folks, but very rarely at my age, so they told me. I am unique they said. I was in the hospital for 5 days and they kept telling me I was a very sick woman. They sent blood work away, however, it will be at least a month before we get the results. I actually scared the heck out of my siblings/cousin because they couldn't find me. They called the police and the police located me at the ER. After spending the last two years learning all about T2, now I have to do a sudden switch and learn about insulin, how and when to eat, check blood more often, eat to keep my sugars up (they've been as low as 2.1) since I got home. I have to get my Free Style Libre set up because I have to check so often. I, too, hope it gets easier once I get my head around it. Too much for an old lady!! I pray both of us will conquer this steep learning curve and go on to live a normal life.

I only went back to the doctors due to constant bad guts. Saw the nurse practitioner who did a load of blood tests and booked me in to see my Gp. Who did more blood tests due to the age I was when originally diagnosed t2. Waited over a month for the results which came back as t1.

We will get our heads around it just a matter of when.

 

[EllieM]

Who did more blood tests due to the age I was when originally diagnosed t2.

It's pretty sad that your original doctor did not do those tests. Even when I was diagnosed (49 years ago) it was known that T1 could occur at any age before 30 (obviously the age limit has now disappeared but the point is that even out of date doctors should test for T1 in a 25 year old).

 

[StaceyEmma]

It's pretty sad that your original doctor did not do those tests. Even when I was diagnosed (49 years ago) it was known that T1 could occur at any age before 30 (obviously the age limit has now disappeared but the point is that even out of date doctors should test for T1 in a 25 year old).

They put on my notes that they had thought about doing them which I only found out with my current GP as she went right back through my notes to diagnosis. So glad I’m not with my previous surgery anymore. As my current nurse practitioner and gp are amazing in supporting me.

When originally diagnosed I was slim (60kg), athletic, very active (in the gym 5/6 days a week), low carb and zero sugar diet, an ex smoker. I got further ill a while after diagnosed (also a migraine sufferer along side depression which I ended up in hospital for suspected brain bleeding which thankfully did not have). So started smoking again and the weight piled on due to medication.

 

[EllieM]

So started smoking again

I know I'm an annoying evangelist about this, but please work really hard to become an ex-smoker again. Smoking and diabetes is a terrible combination. My T1 mother would probably still be alive if she'd stopped smoking at your age and not at 70....

So glad you've found a good GP now.

 

[StaceyEmma]

I know I'm an annoying evangelist about this, but please work really hard to become an ex-smoker again. Smoking and diabetes is a terrible combination. My T1 mother would probably still be alive if she'd stopped smoking at your age and not at 70....

So glad you've found a good GP now.

I plan on stopping again once I’ve got everything settled down into a routine and got my head around building a regular regime.

 

[Lynnzhealth]

They put on my notes that they had thought about doing them which I only found out with my current GP as she went right back through my notes to diagnosis. So glad I’m not with my previous surgery anymore. As my current nurse practitioner and gp are amazing in supporting me.

When originally diagnosed I was slim (60kg), athletic, very active (in the gym 5/6 days a week), low carb and zero sugar diet, an ex smoker. I got further ill a while after diagnosed (also a migraine sufferer along side depression which I ended up in hospital for suspected brain bleeding which thankfully did not have). So started smoking again and the weight piled on due to medication.

I worked for 2 years on LCHF and lost 55 lbs, and according to the doctor I was doing everything right. That's good to know. Now I need to know what happened. I'm thinking all doctors should be doing the specialty tests before diagnosing which type they think it is. So, onwards and upwards for both of us.

 

[StaceyEmma]

I worked for 2 years on LCHF and lost 55 lbs, and according to the doctor I was doing everything right. That's good to know. Now I need to know what happened. I'm thinking all doctors should be doing the specialty tests before diagnosing which type they think it is. So, onwards and upwards for both of us.

Them doing the specialist test before diagnoses would help everyone all round then not wasting years of incorrect medications and treatments.

 

[Skinto McGinto]

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

In the same boat (misdiagnosed as T2 in 2014, rediagnosed as LADA last Wednesday). My c-peptide scores are pretty high but it was the antibodies that done it...

It is a big shock right enough - I've to return to the clinic in a month's time to potentially start insulin, but can only say that it will get better once in the routine, and you will feel better too...!

 

[StaceyEmma]

In the same boat (misdiagnosed as T2 in 2014, rediagnosed as LADA last Wednesday). My c-peptide scores are pretty high but it was the antibodies that done it...

It is a big shock right enough - I've to return to the clinic in a month's time to potentially start insulin, but can only say that it will get better once in the routine, and you will feel better too...!

As soon as my c-peptide and antibodies came back got started on insulin straight away only a few units of slow release until I went to the consultant where it got changed to slightly higher if slow release and 3x daily quick release. Not sure when I’m next being assessed or altered. Not even sure when/if I’ll be going on the T1 courses wasn’t offered DESMOND when I was originally misdiagnosed learnt things on the go and through my mam who is type 2.

 

[ert]

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

Wow. What a journey you've had. It's good you have a conclusive diagnosis which you can start treatment for. Can I ask, you had GAD and of IA2 antibodies 4 years after initial diagnosis?

 

[Lynnzhealth]

As soon as my c-peptide and antibodies came back got started on insulin straight away only a few units of slow release until I went to the consultant where it got changed to slightly higher if slow release and 3x daily quick release. Not sure when I’m next being assessed or altered. Not even sure when/if I’ll be going on the T1 courses wasn’t offered DESMOND when I was originally misdiagnosed learnt things on the go and through my mam who is type 2.

They've changed my doses a couple of times, too, in the past week. Still bouncing between highs/lows, though. I see my doctor this Wed. We'll see how that goes. Then the Diabetic Educator in June.

 

[StaceyEmma]

Wow. What a journey you've had. It's good you have a conclusive diagnosis which you can start treatment for. Can I ask, you had GAD and of IA2 antibodies 4 years after initial diagnosis?

Yeah I did. Different surgery now, I had an appointment with nurse practitioner for constant stomach upset. She questioned about my diagnosis for T2 as I was not the normal age, etc. So did some bloods and sent me to see the gp who ordered the gad and cpep tests (the nurses in my surgery didn’t have a clue!)

 

[StaceyEmma]

They've changed my doses a couple of times, too, in the past week. Still bouncing between highs/lows, though. I see my doctor this Wed. We'll see how that goes. Then the Diabetic Educator in June.

I have no idea when I’m due to see my gp or consultant next but seeing the surgery’s diabetic nurse on Friday.

I don’t know if I’m just testing too often but 100 strips only seem to last me two weeks and they aren’t currently on my repeat prescription yet.
(Test before I drive anywhere as nearly always have at least 1 niece or nephew in the car with me)

 

[StaceyEmma]

In the same boat (misdiagnosed as T2 in 2014, rediagnosed as LADA last Wednesday). My c-peptide scores are pretty high but it was the antibodies that done it...

It is a big shock right enough - I've to return to the clinic in a month's time to potentially start insulin, but can only say that it will get better once in the routine, and you will feel better too...!

Yep same apart from they started me straight on insulin as soon as my results were in

 

[Antje77]

I don’t know if I’m just testing too often but 100 strips only seem to last me two weeks

Which is only 7 tests per day and definitely not too much. You need those tests to get to know what you're doing!