Need Feedback Please

[Missgilliano]

Hi guys, need some feedback.
14 wks ago I was diagnosed with Type 1, with a fasting BG of 26 & +3 for ketones.
I was put on 8 units of Lantus & also given Novorapid.
I am 36 & weigh 57.5kg, height is 170cm approx.
When diagnosed I was very symptomatic: extreme tiredness, aching thighs, genital itching, extremely blurry vision, great thirst, urinating a lot, restless during the night etc.
I'm not a big eater & I never have very carb heavy meals (I don't skip carbs), I also train 3 times a week, a mixture of HIIT circuits & Kettle bells.
At the moment I am finding that I only need Novorapid if I eat a carb heavy meal or if I'm treating myself to ice cream or chocolate.
I was diagnosed by a specialist diabetes consultant but today at my diabetes clinic I saw another doctor. He took 1 look at my very good BG control & only 8 units of Lantus most days & declared I must be Type 2 & he would move me to Metformin.
I have an older Type 2 brother, he fits the profile very well, I do not.
My initial hba1c was 96 this is now down to 52 but my blood tests were negative for antibodies.
The diabetes specialist nurse said this sometimes happens....I thought I was doing really well with my Diabetes but now I just feel like a bit of a fraud, could I really be Type 2?
Any other Type 2's misdiagnosed as Type 1's??

 

[azure]

Hi @Missgilliano I can't comment about the antibodies (or lack of) but I'm Type 1 and when I was first diagnosed, I was only on 2 units of basal insulin a day. I'm still only on around 7 units now more than 20 years later. Some people are just more sensitive to imsulin than others. Also, you can have what's called a honeymoon period where you body is still able to make a little insuoin of its own.

I don't know if you're Type 1 or Type 2, but if it was me I'd push for more tests and get a definite answer.

Let us know what the answer is

 

[himtoo]

Hi @Missgilliano
welcome to the forum
the numbers you give -- indicate a within range BMI ( around 19.7 )
had you lost weight when you were diagnosed ?
and as @azure said -- you could be very sensitive to insulin
I would also say -- you could be in a honeymoon phase so Type 1 shouldn't be ruled out.

the main thing is -- you are not a fraud
you are a young lady searching for the answers to manage your life the best you can

I am type 1 for 44 years -- and if I eat a carb free meal I can get away with only 1 to 2 units of fast acting
tonight I had an omelette and 1 piece wholemeal toast and a couple of low carb sausages-- total carbs for meal 23
and only needed 3.5u fast acting

 

[catapillar]

@Missgilliano one of the big type 1 symptoms you don't mention is weight loss - did you have dramatic weight loss prior to diagnosis, without trying to?

Having low insulin requirements and good control doesn't determine what type of diabetes you have. Especially when you are newly diagnosed and honeymooning. And if you are slim and active you will likely be sensitive to insulin.

There are tests you can have if the type of diabetes is in question - it sounds like you have had a negative GAD test, but so are c. 25% of type 1s. A GAD test is only definitive if it is positive (that means you are definitely type 1) but if it's negative, that doesn't mean you aren't type 1. You can have a c-peptide test, which tells you if you are making some of your own insulin. Then there is also MODY which is a genetic form of diabetes which could be tested for.

Don't feel like a fraud! That's horrible to hear that - you obviously need the insulin and are taking it to keep your blood sugar in check when necessary. That's hard work whatever type of diabetes is the cause!

Push for more tests - and a chat with the specialist consultant.

 

[Missgilliano]

Hi @azure @himtoo & @catapillar & thanks for your kindness, I appreciate it so much!
To answer the question of weight loss, the weight I am now has been my weight for around 6 yrs, but when I was diagnosed I had dropped 9lbs without trying & my whole jeans collection was in jeopardy (lol). I really was pitifully thin & because I'm fairly tall for a woman it made me look thinner again, really not a good look for me.

 

[himtoo]

Hi @azure @himtoo & @catapillar & thanks for your kindness, I appreciate it so much!
To answer the question of weight loss, the weight I am now has been my weight for around 6 yrs, but when I was diagnosed I had dropped 9lbs without trying & my whole jeans collection was in jeopardy (lol). I really was pitifully thin & because I'm fairly tall for a woman it made me look thinner again, really not a good look for me.

that fits a type 1 diagnosis given your already relative low weight and tall height

 

[azure]

Hi @azure @himtoo & @catapillar & thanks for your kindness, I appreciate it so much!
To answer the question of weight loss, the weight I am now has been my weight for around 6 yrs, but when I was diagnosed I had dropped 9lbs without trying & my whole jeans collection was in jeopardy (lol). I really was pitifully thin & because I'm fairly tall for a woman it made me look thinner again, really not a good look for me.

If that was unnatural weight loss then that does sound more likely to be Type 1. Before I was diagnosed I lost a lot of weight even though I was eating more, and I lost weight noticeably, even on my face. It was quite shocking.

 

[Missgilliano]

@himtoo @azure Yeh it was definitely unnatural weight loss, people were starting to make negative comments about my weight & so I was also eating more (albeit healthy stuff) but nothing made a difference. In the end I had stopped training too to try & help my weigh loss scenario & also because I was just so drained, even keeping up daily life left me extremely fatigued, I was spending all weekend sleeping to recover from a working week.
I suppose I am a pretty unusual type 1 being diagnosed at 36 & all.
They have me down for a "type review" at my next clinic in 3 months, who knows maybe the antibodies will show up to the party this time

 

[noblehead]

I suppose I am a pretty unusual type 1 being diagnosed at 36 & all.

We have members here who have been diagnosed with type 1 much older.

Welcome to the forum

 

[Missgilliano]

We have members here who have been diagnosed with type 1 much older.

Welcome to the forum

Thank-you!

 

[himtoo]

@himtoo @azure Yeh it was definitely unnatural weight loss, people were starting to make negative comments about my weight & so I was also eating more (albeit healthy stuff) but nothing made a difference. In the end I had stopped training too to try & help my weigh loss scenario & also because I was just so drained, even keeping up daily life left me extremely fatigued, I was spending all weekend sleeping to recover from a working week.
I suppose I am a pretty unusual type 1 being diagnosed at 36 & all.
They have me down for a "type review" at my next clinic in 3 months, who knows maybe the antibodies will show up to the party this time

Type 1 can rear its lovely ( ) head at many ages

 

[catapillar]

@himtoo @azure Yeh it was definitely unnatural weight loss, people were starting to make negative comments about my weight & so I was also eating more (albeit healthy stuff) but nothing made a difference. In the end I had stopped training too to try & help my weigh loss scenario & also because I was just so drained, even keeping up daily life left me extremely fatigued, I was spending all weekend sleeping to recover from a working week.
I suppose I am a pretty unusual type 1 being diagnosed at 36 & all.
They have me down for a "type review" at my next clinic in 3 months, who knows maybe the antibodies will show up to the party this time

I'm not a doctor, but it sounds more like type 1 to me. It's an autoimmune disease and can hit at any age.

If you are interested in keeping up with training and insulin management I would recommend finding the type 1 diabetic athletes group on Facebook

 

[CarbsRok]

It just sounds to me as if you are honeymooning at the moment, ie. your pancreas is spluttering the last throws of insulin before it pops it's clogs.
Perhaps you saw a Jr doctor who hasn't heard of the honeymoon period. Perhaps contact the consultant that diagnosed you and query the re-diagnoses.

 

[Auckland Canary]

Yes to be honest you sound more like a T1 going through the honeymoon phase. I would definitely ask for more tests then you can start getting your treatment sorted correctly. If you are T1 and they take you off insulin you will start getting sick again pretty quickly.

 

[Diakat]

I was 42. I'm 160cm and just under 50kg so similar. Luckily my gp thought I was "atypical for a type 2" sent me to consultant straight away who said type 1. I am very insulin sensitive and can get away with no insulin for a carb free meal.
Can you ask for the original doctor again?

 

[Daibell]

Hi. I was (mis) diagnosed with diabetes at age 60. I had all of the symptoms you've had. I can be fairly confident in agreeing with your first consultant that you are T1. The Metformin won't do any harm and will reduce your blood sugar a bit. As you come out of the honeymoon period you may well need more insulin. I had my tests done privately as my surgery wouldn't accept I was not a T2. My GAD was negative but my c-peptide showed I had low insulin as I expected. There are other causes of islet cell death that don't show-up with GAD tests including rarer antibodies, viruses and pancreatitis. I'm afraid there is so much ignorance around about Late onset T1 so welcome to the club!

 

[Missgilliano]

I'm not a doctor, but it sounds more like type 1 to me. It's an autoimmune disease and can hit at any age.

If you are interested in keeping up with training and insulin management I would recommend finding the type 1 diabetic athletes group on Facebook

Thanks, I'm def going to check that group out...just going to plod on as a Type 1 until November & then see whether they kick me out of the club or not lol

 

[Missgilliano]

I was 42. I'm 160cm and just under 50kg so similar. Luckily my gp thought I was "atypical for a type 2" sent me to consultant straight away who said type 1. I am very insulin sensitive and can get away with no insulin for a carb free meal.
Can you ask for the original doctor again?

Going to try & see the original doctor in November, but it's just hit & miss who you get on the day. But as I'm down for a type review it will most likely be her I see as she's the specialist.

 

[Diakat]

Going to try & see the original doctor in November, but it's just hit & miss who you get on the day. But as I'm down for a type review it will most likely be her I see as she's the specialist.

Fingers crossed that you do get eveything clarified. Whichever type you can manage it and the excercise will definitely help.