Could i have been wrongly diagnosed?

[tiredsincebirth]

Hello,
I wanted to share some thoughts I had about my diagnoses of Type 1 diabetes and wondered if anyone could offer any advice or opinions.

About 4 years ago i was recovering from Bulimia. After spending years binging on large amounts of food and then purging i finally said to myself that the only way I am going to recover from this is to just not allow myself to purge after binging under any circumstance - even if that meant feeling very uncomfortable or putting on a large amount of weight.

I followed through with this process. I stopped purging but for about 3 months i continued to binge, eating over 6000 calories a day (including a lot of sugary foods) whilst staying in bed and not moving around at all as i felt quite anxious and depressed about what my recovery would entail. I gained a large amount of weight (although still being a slim build).

One day, after i finished binging on almost 2 boxes of sugary cereal amongst other things, i felt this enormous thirst and could not stop downing water and going to the loo.
I went straight to the doctor that day where they checked my blood glucose, my reading was 30 mmol/L (540.0 mg/dL).
The doctor instantly diagnosed my with type 1 diabetes. When i asked how they knew it was type 1 over type 2, she said it cant be type 2 as you are slim and the reading is so high (i was too embarrassed to mention i had just consumed almost 1000 grams of sugary cereal and if that could have anything to do with it.)

After a year of insulin injections i decided to try a very low carbohydrate diet with periods of fasting, a bit like the 5:2 diet, to See what affects it had on my blood sugar.
Within about 3 or 4 months my blood sugars where normal and i was off insulin. The doctors explained that this was a honeymoon period and there was still no question i was type 1 rather than type 2.

This honeymoon period lasted a year, until a low period in my life caused me to start overeating again on high amounts of fat/sugary foods. My blood sugars began to rise and i was back on insulin.

I know that Type 2 diabetes is often caused by dietary lifestyle which seems to coincidently match up with my eating a habits at the time. I also know that it is fairly rare to get Type 1 diabetes in your twenties.

So my question to anyone that can offer any opinions or advice is - COULD IT BE POSSIBLE I AM TYPE 2 DIABETIC RATHER THAN TYPE 1?

(I have started the low carbohydrate diet again in the past few days and have already seen a drop in my blood sugars, so i will continue to see what happens)

Any response will be highly appreciated,
Thank you!

 

[Docb]

Three immediate thoughts.

Whether you are T1 or T2 can be determined by blood tests. Quite why your GP has decided you are T1 without them is hard to understand.

If it is suspected that you are T1 then, as far as I am aware, you should be referred to a diabetes specialist clinic to assess you (they would carry out the blood tests) and organise your insulin therapy if that was needed.

From what you say it would appear you have an eating disorder. Eating disorders are serious and need to be treated properly and I would suggest you think hard about talking to your GP about it.

 

[Tee G]

Hi and Welcome - As i understand it, Anyone can get T1 & T2 at any time in their life, its not always linked to sugar consumption, sometimes its age related, sometimes hereditary - all sorts of reasons.

I do feel as @Docb has suggested, you need a frank and open discussion with your GP about whats really going on here. They wont judge you - they are there to help. And yes, you defo need specific types of blood tests to figure out which type you have. If you are not open with your GP about your eating patterns then how do you expect them to give a good diagnosis/prognosis?. That would be extremely hard.

I would urge you to seek help so you can start to manage this properly. Take courage, you need to be the best you can for your future self. - Be brave - good luck.

Differences between type 1 and type 2 diabetes

There are differences in the causes, onset of symptoms and treatment of type 1 diabetes and type 2 diabetes. If you have type 1 or type 2 diabetes, it means there's too much glucose (a type of sugar) in your blood due to a problem with the hormone insulin. Both are serious conditions that can...

www.diabetes.org.uk

 

[Thebearcametoo]

Hi, as Docb says there are blood tests that can show how active your pancreas is and so determine which type of diabetes you have. Either way a lower carb way of eating will help with your glucose control so it getting easier to manage your diabetes when you eat low carb isn’t itself diagnostic. Are you carb counting and giving the right insulin dose when you binge? I only ask as you say your levels have dropped noticeably. Binge eating will make any type of diabetes harder to control but if you understand how your body reacts to different carbs and are giving appropriate levels of insulin to go with the carbs you’re eating then it’s still possible to be close to target even when binging. Health-wise if you can stay close to target range as much as possible then your health risks from diabetes will be lessened. Binge eating causes its own issues and I hope you can access some help and support with that and the causes of your disordered eating. I know support for eating disorders is hard to come by these days (even before Coronavirus) so it may be that your gp can only refer you to mental health support but that is still worthwhile. Your GP, diabetes nurse or diabetes specialist would be able to talk you through your blood tests and clarify the diagnosis so you know what’s going on for your own peace of mind. None of us can give you that answer just help you understand the general principles.

 

[trophywench]

It's not at all rare to get T1 in your 20s! I was 22 and was married and we were in our own home, for 15 months. I am far from rare.

 

[grovesy]

Hello,
I wanted to share some thoughts I had about my diagnoses of Type 1 diabetes and wondered if anyone could offer any advice or opinions.

About 4 years ago i was recovering from Bulimia. After spending years binging on large amounts of food and then purging i finally said to myself that the only way I am going to recover from this is to just not allow myself to purge after binging under any circumstance - even if that meant feeling very uncomfortable or putting on a large amount of weight.

I followed through with this process. I stopped purging but for about 3 months i continued to binge, eating over 6000 calories a day (including a lot of sugary foods) whilst staying in bed and not moving around at all as i felt quite anxious and depressed about what my recovery would entail. I gained a large amount of weight (although still being a slim build).

One day, after i finished binging on almost 2 boxes of sugary cereal amongst other things, i felt this enormous thirst and could not stop downing water and going to the loo.
I went straight to the doctor that day where they checked my blood glucose, my reading was 30 mmol/L (540.0 mg/dL).
The doctor instantly diagnosed my with type 1 diabetes. When i asked how they knew it was type 1 over type 2, she said it cant be type 2 as you are slim and the reading is so high (i was too embarrassed to mention i had just consumed almost 1000 grams of sugary cereal and if that could have anything to do with it.)

After a year of insulin injections i decided to try a very low carbohydrate diet with periods of fasting, a bit like the 5:2 diet, to See what affects it had on my blood sugar.
Within about 3 or 4 months my blood sugars where normal and i was off insulin. The doctors explained that this was a honeymoon period and there was still no question i was type 1 rather than type 2.

This honeymoon period lasted a year, until a low period in my life caused me to start overeating again on high amounts of fat/sugary foods. My blood sugars began to rise and i was back on insulin.

I know that Type 2 diabetes is often caused by dietary lifestyle which seems to coincidently match up with my eating a habits at the time. I also know that it is fairly rare to get Type 1 diabetes in your twenties.

So my question to anyone that can offer any opinions or advice is - COULD IT BE POSSIBLE I AM TYPE 2 DIABETIC RATHER THAN TYPE 1?

(I have started the low carbohydrate diet again in the past few days and have already seen a drop in my blood sugars, so i will continue to see what happens)

Any response will be highly appreciated,
Thank you!

We have members who have been diagnosed as Type 1 in 50, 60, AND 70.

 

[everydayupsanddowns]

Welcome to the forum @tiredsincebirth

As others have suggested, while T1 is often thought to be a condition linked to childhood, approximately 50% of cases are diagnosed in adulthood.

Diagnosis of T1 is recommended to be made by clinical factors, and routine antibody testing is not advised in national guidance, however it can help to clarify less usual cases, and yours certainly seems to fit that description.

Hope you manage to get some clarity soon.

I‘d agree that it sounds like you would benefit from more specialist support in a hospital clinic.

 

[KARNAK]

Hello @tiredsincebirth welcome to the forum.

I agree with the other members on this thread you really need more help than your Dr is giving you, you should be under a Diabetic Specialist Nurse (DSN) and a Diabetic Consultant from the hospital. Also a Dietician would be of great help to you, you could probably build a good relationship with the DSN and the Dietician and speak more frankly with them, ask your Dr for a referral to the Diabetes team at the hospital who can then decide your best course of treatment.

Please let us know how you progress we will look forward to hearing from you, take care.

 

[Mickeyminime]

I was diagnosed in 2018 as type 1 despite my family who have the illness are type 2. My levels when i was diagnosed where 177 if i remember when they should have been between 40/50. I've had so many nurses and doctors, even my GP say i'm type 1, not type 2. However, i've had 2 nurses, specially the Diabetic speciallist say i might be type 2 despite all the blood tests saying otherwise so far. I'm on insulin and have been since day 1. They gave me tablets for the first 3 days until i was taken off them as my results where always above 30 each time i tested my levels.