Newly diagnosed with diabetes, please help?

[dustyblush]

Hi there,

I found out on 3 July, this year that I have diabetes. I have a family history of both Type 1 (Dad) and Type 2 (Mum).

I went for a routine healthcare check-up and my blood sugar measured at 19. The Doctor said he was unsure if I was Type 1 or 2 as my age (23) indicated I was a Type 2 but my blood sugar levels indicated towards Type 1.

I was given insulin - a morning and night slow release pen and a quick-acting pen for taking before meals. The insulin has significantly reduced my blood sugar levels but I did have some resistance at first, or what I thought was resistance maybe? I eat a lot of carbs (I know I shouldn't but long story short, I am out of work and cannot afford to buy my own food for now and live with parents) so I took higher units of insulin whenever I ate more carbs and my blood sugar dropped to between 8-9.

I had all the routine tests for Type 1 done and they came out as negative. I met a diabetes specialist and he prescribed me Glucophage which has also helped to lower my blood sugar a lot quicker than insulin alone does after a meal. The Doc. said if Metformin worked well for me, he would assume I was a Type 2 ans weane me off insulin slowly.

My question is, I'm scared that he'll make the wrong diagnosis. My Dad is Type 1 and he takes slow release insulin alongside Metformin. And though my test results have come out negative for Type 1 Diabetes, what if that is the type I truly have? If a combination of both insulin and Metformin is helping me to keep my blood sugars in the normal range, shouldn't I take both together?

I'm sorry if I sould completely mental. Of course I'd rather not take insulin and have Type 2 as it would be easier to manage but I want to feel comfortable and secure in that I have been correctly diagnosed. Any help and advice you can give would be great. Thank you.

 

[dustyblush]

Sorry for the spelling mistakes!

 

[azure]

@dustyblush With your dad having Type 1, I can understand your concern. You say all the tests for Type 1 were "negative". Do you know what particular tests they did? If they tested for antibodies, some adult-onset Type 1s don't have those but are still Type 1.

You mention you're 23. There's no reason why your age would make you more likely to be Type 2. Many Type 1s are diagnosed in their, 20s, 30s, 40s, 50s and older.

Did you have any Type 1 symptoms like weight loss prior to diagnosis?

 

[sarzie]

I was diagnosed with type 1 diabetes last year at 18 however my blood test reaffirmed that (c-peptides and all). I think it is best to listen to your doctor for now, if the tests indicated that it was type 2 then work with that. Try eating pretty low carb, this will best control your levels and it will also help you to see if it can be controlled solely with metformin (or other medication). For example, if you begin to follow a low carb diet for a few weeks and still find that your blood sugar is too high then you should bring it up with your doctor.

 

[azure]

Just a reminder that people on insulin (whatever their diabetes type) should never reduce their carbs without checking with their doctor or nurse as there's a risk of hypoglycaemia if appropriate reductions aren't made to insulin doses too.

 

[dustyblush]

@azure Thank you for your reply.

I believe they took a c-peptide test and an antibodies test and both those results were negative. I do know of someone who has had negative results for these tests also and was wrongly put on just Metformin and suffered the consequences of high blood sugar as a result. This is why I'm a bit overly cautious I guess.

And yes! Thank you for bringing up the weight loss thing as I completely forgot to mention, I lost 2½ stones over a period of 8-ish months without trying and my Doc. said this usually happens with T1s but it can happen with T2s.

Also thank you for the advice on not lowering carbs. I feel like as long as my BS levels are normal, I can continously eat carbs for now.

I do plan on going Paleo as soon as I have a job so that should help with the low carb thing but I shall make sure to talk to my Doctor about lowering my insulin too.

 

[Bluetit1802]

Hi and welcome aboard!

I have one point to make, and that is about Metformin. If you have noticed a reduction in your blood sugars I very much doubt it is the Metformin. It is a mild drug that helps (to a limited extent) with insulin resistance and by helping to reduce the amount of glucose produced by the liver (again to a limited extent.) It is also an appetite suppressant so it helps those that are over weight more than those of normal weight.

If it happens that you are type 2 with insulin resistance, taking insulin by injection won't be helping reduce the insulin resistance. The more insulin in your body, your natural insulin plus injected, the worse any insulin resistance may become and the more insulin you will need. It is a vicious circle.

Was that figure of 19 an ordinary plasma glucose test, a fasting plasma glucose test, or an HbA1c test?
What were the other tests you had that came back negative? What were the actual figures?
If you don't know the answers to these, I suggest you ask for print outs of your test results as these will give you all the information you need. It is important you know which tests you had and what all the actual levels were.

 

[slip]

I was diagnosed Diabetic aged 27, initially thought of a T2 but basically a few weeks just on metformin confirmed I was T1 and required insulin - lost a ton of weight very quickly and that first injection of insulin was like a magic energy bullet - You and your HCP might not have such a cavalier approach but it will soon become obvious if you need insulin and are (probably) T1. I wonder if you felt that magic bullet the first time you had insulin?

I subsequently had further tests to confirm my Type much later and was actually due to doing a trial anyway

 

[azure]

@azure Thank you for your reply.

I believe they took a c-peptide test and an antibodies test and both those results were negative. I do know of someone who has had negative results for these tests also and was wrongly put on just Metformin and suffered the consequences of high blood sugar as a result. This is why I'm a bit overly cautious I guess.

And yes! Thank you for bringing up the weight loss thing as I completely forgot to mention, I lost 2½ stones over a period of 8-ish months without trying and my Doc. said this usually happens with T1s but it can happen with T2s.

Also thank you for the advice on not lowering carbs. I feel like as long as my BS levels are normal, I can continously eat carbs for now.

I do plan on going Paleo as soon as I have a job so that should help with the low carb thing but I shall make sure to talk to my Doctor about lowering my insulin too.

Hmm, that weight loss is quite high. I can totally understand why you're worrying about being Type 1. Personally, I'd ask for a second opinion.

You've not mentioned your current weight or BMI and you don't have to, but if you were a normal weight and then lost all that weight, that does sound like it could possibly be Type 1 despite the absence of antibodies. I'll tag @catapillar because she explains this well.

 

[catapillar]

Hi @dustyblush , first thing, being diagnosed diabetic aged 23 doesn't indicate type 2, 23 is a bit young for type 2 diabetes when you consider that the risk for developing type 2 increases once you're over 45 - middle age is the high risk time for type 2. Type 1 is an autoimmune disease that can strike at any age, it might be called juvenile diabetes but that is a misnomer, 23 is certainly not too old to be diagnosed with type 1.

So you say you've had a cpeptide test and an antibody test and they were negative. Type 1 is an autoimmune disease so the antibody tests were looking for antibodies associated with type 1. A positive antibody test confirms you definitely have type 1. But a negative antibody test doesn't confirm that you don't have type 1. About 25% of type 1 diabetics test antibody negative.

A cpeptide test is a test to see if you are making any of your own insulin. A honeymooning type 1 will be making insulin, so a cpeptide test that shows you are making insulin doesn't mean you aren't type 1 because a recently diagnosed type 1 will still be making some of their own insulin, possibly slightly less than normal but still some. In contrast, as type 2 is a condition of insulin resistance a type 2 diabetic is likely to have a cpeptide test that shows insulin production levels higher than normal. It's worth trying to get the results of your cpeptide tests to see if it shows you are producing more insulin (suggests type 2) or less insulin (suggests type 1) than normal.

What is your insulin dosage looking like at the moment? How many units a day? If you think there is resistance your insulin dosage might help you analyse that.

The fact is, if you have a negative antibody test you are never going to get a definitive answer on what type of diabetes you have. My advice would be not to be overLy concerned about what type to call it. The important thing is getting the right treatment. You are currently under the care of a diabetic specialist at hospital, you are currently on a basal bolus insulin regiem, presumably you are being closely monitored and have access to support from diabetic specialist nurses. If your doctor wants to try weaning you off insulin because test results and presntation/management on metformin suggests type 2 then that will be done under close monitoring, you will likely still have access to insulin if you need it. "Weaning" suggests a slow process where you and your doctor can assess whether it is working or not, if you see higher blood sugars than you'd like during the process then it will be open to you to discuss concerns with your doctor and stop the wean.

 

[dustyblush]

@Bluetit1802 I think the only good thing that has come from using Metformin is I have noticed how quickly my blood sugar drops to a normal level after eating. Usually it's around 15-16 after eating, however upon taking Metformin that has reduced to 8-9. (The side effects of Metformin are horrible!)

I definitely agree with how Metformin suppresses your appetite as I hardly feel hungry anymore and sometimes can survive off very few calories a day.

What you said about insulin not working for an insulin resistant person... I don't think that is my case. Insulin works very well for me and has done for a few weeks now.

The figure of 19 was for a HbA1c test. Correct me if I am wrong, but is that the one in which the test your overall sugar levels over a period of the past three months? Because if that is what the HbA1c test is then yes, that is the one in which my sugar levels were 19.

 

[dustyblush]

@catapillar Thank you SO much for your help, advice and very informative reply!

If I could please ask you to translate these results for me as I have NO clue what they mean!

My c peptide test came in at 2996 for a glucose level of 18.2mmol/L

They also did a celiac test which was negative.

My insulin dose is 16 units for the Levemir (slow release day and night) and I change it up for Humalog (instant) depending on the amount of carbs I am having but it can be between 16-24. (I do eat a lot or carbs ATM.)

Thank you, I think I will leave it to the specialists and hope for the best. I feel so much better after having come on here and been comforted by the real experts - people who have been through the problem!

 

[dustyblush]

@catapillar Also, may I ask, I have been told by a friend that apparently c peptide tests aren't clear once you are already on insulin?

 

[catapillar]

Do you know what units your cpeptide result was measure in @dustyblush ?

Your friend is wrong. The accuracy of a cpeptide result is not impacted in anyway by taking insulin. Cpeptide is a protein waste protuct created when your pancreas makes insulin. The fact you are injecting insulin doesn't change the insulin you are producing naturally and doesn't change the cpeptide you make or the results of the test.

 

[Bluetit1802]

The figure of 19 was for a HbA1c test. Correct me if I am wrong, but is that the one in which the test your overall sugar levels over a period of the past three months? Because if that is what the HbA1c test is then yes, that is the one in which my sugar levels were 19.

Wow! That is very, very high for an HbA1c. It equates to an average of 27.6mmol/l (the units we have on our meters). Yes, you are right, the HbA1c is the test to measure a sort of average over the previous 2 to 3 months. That is one heck of a high level.

 

[donnellysdogs]

Reading all posts I am also thinking you are T1 no matter what age.. 23 is actually more T1 than T2 and even a negative cpep but something is still making me lean on T1 diagnosis being correct.

No way would I in your shoes contemplate that coming off insulin at all as being a good move to check diagnosis.. even under a GP suggestion I would not do.

Have you been referred to consultant care at a hospital? I would be asking for that rather than a gp playing around... get to a specialist that deals with diabetes day in, day out and is their speciality rather than a general practitioner...

 

[dustyblush]

@catapillar Unfortunately not. I received the results in a summary letter from my Doctor of our appointment and discussion. He didn't include the units - it just says 2996. I will give him a call tomorrow and hopefully he'll share what the units were.

Yes, that makes sense about the pancreas/c peptide. Thank you for clarifying.

 

[dustyblush]

@Bluetit1802 I've been told by many people that this is a very high number for a HbA1c test. I'm so glad I was unaware at the time of my diagnosis what these numbers meant or I'd have very likely panicked and cried!

 

[dustyblush]

Yes, I'm glad you agree. I think I'm a T1 buT wishing I was a T2 as I'd rather just take a couple of tablets a day and sort my blood sugar out that way.

I have been referred to a diabetes specialist at a diabetes centre (lucky to have one in my city). The nurses and doctors there are lovely and are taking their time with helping me. I'm very grateful. I guess I just needed consoling as I've only been diagnosed a month and so am picking up things still.