Wrong Diagnosis?

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Deleted member 391597

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Hi everyone! Not sure where to start! I met with my endocrinologist today, 10 months after having my antibodies test. I initially requested this as I was first diagnosed with gestational diabetes in 2016 (blood sugars were usually below 10 without insulin but I did have ketones present so the diabetic nurse thought I might be developing Type 1). Once started on insulin my numbers were perfect. I was then told it was just gestational and to stop all insulin once the baby was born, which I did and took nothing for 6 months. Then I had a nasty case of the norovirus and ended up in full blown DKA in hospital. Following this I was told there was no doubt about it, I was Type 1 despite having no symptoms leading up to diagnosis. So I began taking Novorapid and Lantus daily.
So fast forward to today. My endocrinologist said my antibody test came back negative so I am NOT a Type 1 after all. My Hba1c is 34 (5.3) and that I can come off insulin tomorrow and start taking Metformin twice a day. He believes I have some kind of genetic form of diabetes and has referred me to a specalist (with a very long waiting list).

Due to the utter shock, I totally forgot to ask him what my c-peptide results were and how Metformin actually works. Whether I should change my diet etc. So I phoned my nurse this afternoon and she was shocked that he had told me to stop taking insulin since I had DKA last year. She told me to continue to take the insulin until she speaks to him next week and will arrange for me to then meet with her.

So I was just wondering if this has happend to anyone else and if anyone else has some kind of genetic diabetes and what the difference is? Not really sure what to class myself with at the moment! Still unsure if I am actually Type 1 after the DKA episode!

He also told me insulin does make you gain weight which is depressing! I am 10lbs over my healthy weight and finding it tricky to lose despite sticking to 1200/1300 calories a day and lowering my insulin doses.

Sorry for the long post but hoping to have some advice as I know lots of you are very knowledgeable!

Thanks,

Hollie
 

karen8967

Master
Messages
10,330
Type of diabetes
Type 1
Treatment type
Insulin
Hi everyone! Not sure where to start! I met with my endocrinologist today, 10 months after having my antibodies test. I initially requested this as I was first diagnosed with gestational diabetes in 2016 (blood sugars were usually below 10 without insulin but I did have ketones present so the diabetic nurse thought I might be developing Type 1). Once started on insulin my numbers were perfect. I was then told it was just gestational and to stop all insulin once the baby was born, which I did and took nothing for 6 months. Then I had a nasty case of the norovirus and ended up in full blown DKA in hospital. Following this I was told there was no doubt about it, I was Type 1 despite having no symptoms leading up to diagnosis. So I began taking Novorapid and Lantus daily.
So fast forward to today. My endocrinologist said my antibody test came back negative so I am NOT a Type 1 after all. My Hba1c is 34 (5.3) and that I can come off insulin tomorrow and start taking Metformin twice a day. He believes I have some kind of genetic form of diabetes and has referred me to a specalist (with a very long waiting list).

Due to the utter shock, I totally forgot to ask him what my c-peptide results were and how Metformin actually works. Whether I should change my diet etc. So I phoned my nurse this afternoon and she was shocked that he had told me to stop taking insulin since I had DKA last year. She told me to continue to take the insulin until she speaks to him next week and will arrange for me to then meet with her.

So I was just wondering if this has happend to anyone else and if anyone else has some kind of genetic diabetes and what the difference is? Not really sure what to class myself with at the moment! Still unsure if I am actually Type 1 after the DKA episode!

He also told me insulin does make you gain weight which is depressing! I am 10lbs over my healthy weight and finding it tricky to lose despite sticking to 1200/1300 calories a day and lowering my insulin doses.

Sorry for the long post but hoping to have some advice as I know lots of you are very knowledgeable!

Thanks,

Hollie
im sorry to hear of your troubles hollie .insulin does not make you gain weight extra calories will but not insulin .cant help with the diagnosis but someone on here should be able to give you some answers but do let us know the outcome next week :)
 

catapillar

Well-Known Member
Messages
3,390
Type of diabetes
Type 1
Treatment type
Insulin
My endocrinologist said my antibody test came back negative so I am NOT a Type 1 after all.

This is not correct. A positive antibody test means you are definitely type 1. But a negative antibody test doesn't mean you aren't type 1. About 25% of type 1s are antibody negative. Either because we haven't identified the antibodies that they have yet, or because the longer you wait between autoimmune attack and testing the less likely you are to have antibodies. If the beta cells are all dead and there's nothing left for the antibodies to kill they aren't going to hang around twiddling their thumbs on the off chance someone is going to test for them.

Exeter hospital do genetic testing for MODY. Do you have a strong family history of diabetes, parents, grandparents, uncles/ aunts and brothers /sisters with diabetes? Many patients with MODY find it can be controlled with Gliclazide and no need for insulin. It's not normally managed just with metformin though.
 

slip

Well-Known Member
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3,523
Type of diabetes
Type 1
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Insulin
I think about 25% of c-pep results are falsely negative, you may want to investigate that......and catapiller beat me to it............!
 
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Deleted member 391597

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Thanks for your reply @catapillar! I did read about some people being negative for antibodies but still being Type 1 but he didn't mention this! Diabetes is extremely genetic in my family on my father's side of the family. All diagnosed as young(ish) adults and none of them over weight. Bit nervous about stopping insulin after having DKA and I feel good at the moment. So pleased with my Hba1c. Just wish I knew what I had!
 
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catapillar

Well-Known Member
Messages
3,390
Type of diabetes
Type 1
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Insulin
Id follow your DSNs advice and keep taking your insulin until you see her for some clarity on your treatment path. So long as your insulin dose isn't causing lots of hypos it won't be doing you any harm. It's not correct to say insulin makes you gain weight. It doesn't. Without insulin it's not possible to put weight on. But while insulin allows for weight gain, the insulin itself doesn't cause weight gain. What you put in your mouth does that.
 

Daibell

Master
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12,642
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Hi. The c-peptide results are important as viruses etc can cause beta cell destruction as well as antibodies. The c-peptide will guide you on how much insulin you are producing. Your endo should know that insulin does not cause weight gain but it enables the body to metabolise any carbs you take which can cause weight gain. You are probably having too many carbs? Forget calories as they are irrelevant in weight control (this may surprise you). Just keep the carbs down and have enough fats, proteins, veg and non-tropical fruit to keep you feeling full. Metformin mainly works by reducing the liver's output of glucose. It helps control blood sugar just a bit and is a safe drug. I think you will find all diabetes is influenced by your genetics and there are many different detailed types beyond T1 & T2; some difficult to determine. If you can reduce your weight into a 'normal' BMI range it will help the endo find the correct diagnosis.
 

donnellysdogs

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My thoughts are:

What are your bloods running at with insulin..

If its insulin that is keeping them level.. then a consultant is wrong to tell you to stop taking insulin...

Also, for me personaly I have been on pretty much every insulin possible and the only time I ever gained weight in 30+ years was when medics told me I had to include more carns in my diet.... I balloned then. Went from a lovely 8-10 no fat woman to a flabby size 12-14....in less than 6 months. Personally, and only in my opinion, not medical at all...hospitals have been saying for decades about eating carbs and saying all persons need them... sorry T1 or not we need to manage our carb quantity... too many from my experience just piled on the weight, not insulin.
Do you know how many carbs you are eating a day?

Dont forget, one size does not fit all... so although I state what happened to me, we are all individual..
 
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Deleted member 391597

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Thank you for your replies @Daibell and @donnellysdogs! I am currently following Weight Watchers and have lost 9lbs during the last 8 weeks. I am averaging about 50g carbs a day. Protein does not seem to raise my sugars in the absence of carbs so I don't take insulin for a carb free meal. My blood sugars are good which I supposr reflects the hba1c...obviously with the help of insulin. I wonder if I am Type 1.5 or 2 or have MODY as my endo suspects...It's mind boggling! Does Metformin decrease insulin doses when taken together?
 

Daibell

Master
Messages
12,642
Type of diabetes
LADA
Treatment type
Insulin
Thank you for your replies @Daibell and @donnellysdogs! I am currently following Weight Watchers and have lost 9lbs during the last 8 weeks. I am averaging about 50g carbs a day. Protein does not seem to raise my sugars in the absence of carbs so I don't take insulin for a carb free meal. My blood sugars are good which I supposr reflects the hba1c...obviously with the help of insulin. I wonder if I am Type 1.5 or 2 or have MODY as my endo suspects...It's mind boggling! Does Metformin decrease insulin doses when taken together?
Hi. When I reduced my Metformin from 2000 to 1000mg I had to increase my Basal by 1 unit so Metformin does work very slightly with insulin to reduce blood sugar.