Newly diagnosed - unsure of type?

[Sky85]

Hi all,

35 years old and newly diagnosed, but unsure about type.

Started suspecting something was up in march. Eye sight (mostly in the right eye) would sometimes fluctuate in and out of focus. This felt more noticeable while eating candy. Had about one week where i felt extra thirsty and about one week where i had a rash behind both knees, but both of these symptoms (?) went away.

I also had some weight loss, which i noticed in April, about 8-10 kg, from 115ish kg to 106ish kg (BMI 36.3 to 33.5). But I can't say how sudden it was, as I can't remember when I last weighed myself. But in general I have mostly been going upwards in weight these past years. I randomly tested my BS at a dinner party 2-3 years ago, where it showed 12 mmol/l, but I didn't think much of it at the time.

Went to the doctor 3 weeks ago, with fasting BS @ 16.1 mmol/l and HbA1c @ 97 mmol/mol. He did a blood sample for C-peptide and put me on 1500mg Metformin (3x500mg daily). I went low carb diet from this point on, which seemed to get my BS down pretty quick (checking multiple times a day with glucose meter).

Unfortunately, the blood sample spoiled and I had to do a new C-peptide 2 weeks later. Fasting BS was @ 4.4 mmol/l and HbA1c was @ 73 mmol/mol this time. I got results from the C-peptide test today, which was 0.60 nmol/l.

My next doctor's appointment isn't for another week, but from what I can gather, the C-peptide result is pretty much in normal range.

Not sure what to make of this? Or how to get a conclusive diagnosis? Even if my doctor would pick a type, I think I'd still be uncertain without something more conclusive?

Thanks!

 

[TashT1]

Hi welcome to the forum,

Unfortunately that does sound like it leaves you a bit in the dark since the c peptide is neither high or low. The next step might be a GAD antibody test which if positive confirms T1. This also has a chance of leaving things inconclusive as if it’s negative it doesn’t necessarily mean your T2.

It sounds like you have made great progress on low carb and metformin, so they might just keep you on this path and monitor you. If this stops working you may be late onset T1 and you can get another c-peptide to confirm low insulin production.

It’s horrible being in this in-between state waiting for a concrete diagnosis. By the time I got a c-peptide it showed low enough levels to be T1 but I’m still getting a yearly test to check how things are changing. I tried to focus on just getting my hba1c down and keeping as healthy as possible.

That being said if your not happy with however your doc deals with things then keep pushing until you have a definitive answer. I don’t think you’d be unreasonable to ask for a recheck on the c-peptide in 6 months time.

 

[Sky85]

Hi welcome to the forum,

Unfortunately that does sound like it leaves you a bit in the dark since the c peptide is neither high or low. The next step might be a GAD antibody test which if positive confirms T1. This also has a chance of leaving things inconclusive as if it’s negative it doesn’t necessarily mean your T2.

It sounds like you have made great progress on low carb and metformin, so they might just keep you on this path and monitor you. If this stops working you may be late onset T1 and you can get another c-peptide to confirm low insulin production.

It’s horrible being in this in-between state waiting for a concrete diagnosis. By the time I got a c-peptide it showed low enough levels to be T1 but I’m still getting a yearly test to check how things are changing. I tried to focus on just getting my hba1c down and keeping as healthy as possible.

That being said if your not happy with however your doc deals with things then keep pushing until you have a definitive answer. I don’t think you’d be unreasonable to ask for a recheck on the c-peptide in 6 months time.

Yeah, I guess I'll ask for an antibody test. I also read that you can do a C-peptide after injecting X amounts of glucose? And see how much it rises. Could that give a more definitive answer? The 3 weeks waiting for an answer have felt so slow. Waiting another 6 months doesn't sound like fun. And also, if it were type 1, wouldn't the Metformin be pointless?

Thanks!

 

[Sky85]

Yeah, I guess I'll ask for an antibody test. I also read that you can do a C-peptide after injecting X amounts of glucose?

injecting should have been ingesting (spelling? eating!).

 

[TashT1]

To be honest getting a c-peptide in the first place can be a struggle, a lot of drs will look at your age , weight and assume T2.

Were there other symptoms on diagnosis such as ketones?

Metformin wouldn’t completely be pointless if your T1 I think some people use it in conjunction with insulin & if there was a bigger indicator towards T1 you would have been started on insulin.

Unfortunately you are kind of in a wait & see situation. If low carb works & your hba1c continues to drop its most likely T2. If your levels rise then further investigation is required.

I’ve not had the test your referring to so I’m not sure in what circumstances it’s used in but I’d be doubtful that it would be an option this early on.

Diabetes is a long game, your going to get used to waiting. 3 weeks for a c-peptide is very quick. It’s currently 6 weeks wait for the eye screening results & that’s after an 11 month wait for the test in the first place. I’m still waiting on a dietician appointment as well. See what your doc says next week, maybe they will be more proactive.

 

[Sky85]

To be honest getting a c-peptide in the first place can be a struggle, a lot of drs will look at your age , weight and assume T2.

Were there other symptoms on diagnosis such as ketones?

Metformin wouldn’t completely be pointless if your T1 I think some people use it in conjunction with insulin & if there was a bigger indicator towards T1 you would have been started on insulin.

Unfortunately you are kind of in a wait & see situation. If low carb works & your hba1c continues to drop its most likely T2. If your levels rise then further investigation is required.

I’ve not had the test your referring to so I’m not sure in what circumstances it’s used in but I’d be doubtful that it would be an option this early on.

Diabetes is a long game, your going to get used to waiting. 3 weeks for a c-peptide is very quick. It’s currently 6 weeks wait for the eye screening results & that’s after an 11 month wait for the test in the first place. I’m still waiting on a dietician appointment as well. See what your doc says next week, maybe they will be more proactive.

I don't believe I was tested for ketones, at least it was never discussed or mentioned.

I will wait and see what the doc says. Not sure I've wrapped my head around how long of a game this actually is.

Thanks for the info

 

[EllieM]

I don't believe I was tested for ketones, at least it was never discussed or mentioned.

You can buy pots of ketone urine testing strips from the chemist, though they are not desperately accurate. Some blood testing meters (eg caresens dual) also test for ketones, but the strips are very expensive. Ketones are only something to worry about if your bg goes very high, though, and bear in mind that normal dietary ketosis can give you moderate levels of ketones. Very high ketones plus high bgs are a trip to A&E though, as that would suggest you need insulin.

And as for diabetic types, if you have a lot of diabetic relatives there is also MODY (basically a diabetes caused by defective genes). The good news is that this is very very rare and that its suffereres often don't need insulin.

To be honest, if you've got a meter and low carb is working for you then its probably just best to be patient on type. Some LADAs cab keep their insulin going for years by reducing carbs. (Though in your position I would be desperate to know too. )

Virtual hugs for your lack of type knowledge and congrats on the most important thing, normalising your blood sugars.

 

[TypeZero.]

Hi all,

35 years old and newly diagnosed, but unsure about type.

Started suspecting something was up in march. Eye sight (mostly in the right eye) would sometimes fluctuate in and out of focus. This felt more noticeable while eating candy. Had about one week where i felt extra thirsty and about one week where i had a rash behind both knees, but both of these symptoms (?) went away.

I also had some weight loss, which i noticed in April, about 8-10 kg, from 115ish kg to 106ish kg (BMI 36.3 to 33.5). But I can't say how sudden it was, as I can't remember when I last weighed myself. But in general I have mostly been going upwards in weight these past years. I randomly tested my BS at a dinner party 2-3 years ago, where it showed 12 mmol/l, but I didn't think much of it at the time.

Went to the doctor 3 weeks ago, with fasting BS @ 16.1 mmol/l and HbA1c @ 97 mmol/mol. He did a blood sample for C-peptide and put me on 1500mg Metformin (3x500mg daily). I went low carb diet from this point on, which seemed to get my BS down pretty quick (checking multiple times a day with glucose meter).

Unfortunately, the blood sample spoiled and I had to do a new C-peptide 2 weeks later. Fasting BS was @ 4.4 mmol/l and HbA1c was @ 73 mmol/mol this time. I got results from the C-peptide test today, which was 0.60 nmol/l.

My next doctor's appointment isn't for another week, but from what I can gather, the C-peptide result is pretty much in normal range.

Not sure what to make of this? Or how to get a conclusive diagnosis? Even if my doctor would pick a type, I think I'd still be uncertain without something more conclusive?

Thanks!

The usual diagnosis would entail...

Type 1 = GAD antibody positivity (or positive for other antibodies) & C-peptide below 200pmol/L (0.2nmol/L) —> clinical symptoms would be weightloss and thirst, usually someone of younger age

Type 2 = C-peptide 600pmol/L or above (0.6nmol/L), high BMI

“Genetic diabetes” MODY = genetic test + C-peptide between 250-400pmol/L (0.25-0.4nmol/L)

The normal range for a fasting C peptide is 400-600pmol/L (0.4-0.6nmol/L) so you’re just on the border to be considered making too much insulin

 

[JustLucky]

I'm 36. My peptide was 0.6, they weren't sure what type I am. After GAD test I'm type 1 or lada on insulin. I hated not knowing and googling all day before the gad test, it's best to know and have the right treatment... I was hoping it's t2 as I have read somewhere it can be healed, but still felt a huge relief just knowing the test results. I didn't expect to be relieved

It's great your fasting glucose is normal.

Best wishes

 

[Sky85]

Thanks to all of you for great information and input. GAD test seems to be next step and what I should to ask my doc for on Tuesday.

 

[NicoleC1971]

Thanks to all of you for great information and input. GAD test seems to be next step and what I should to ask my doc for on Tuesday.

Also as you are getting clued up I am going to recommend Robert Lustig's book on metabolism - Metabolical.
Does a great job explaining the tests more in relation to type 2, which tbh it sounds as if you are. Either way low carb is and metformin is a good way to go.
Getting hold of your triglycerides and hdl C result will also give you a good idea if you are lacking insulin (type 1 or LADA) or making too much of it (type 2). HDL below 50 or 60 and much higher triglycerides indicate the latter for example. As would hypertension, bigger waist.
https://www.amazon.co.uk/Metabolical-Processed-Nutrition-Modern-Medicine/dp/0063027712
Best of luck going forward!

 

[Sky85]

Doctor's appointment today.

Today's Fasting BS was 4.6 mmol/l and HbA1c was 60 mmol/mol (down from 97 in 4 weeks). On the C-peptide results, which were 0.60 nmol/l, he just commented that it was within normal range.

GAD65 antibody test was below 5, which meant it was negative.

Cholesterol from 4 weeks ago was 8.2 (should be around 5). He didn't break the result down further.

He didn't comment on type, but I also forgot to ask. I probably should have asked a more questions in general, but I was so focused on asking for a GAD test, however this had been done on my first visit. I was just never told about it.

Generally he just said to keep going with Metformin and my current diet. So I guess I'll just be satisfied as long as I can control my BS like that.

Cheers