First doctors appointment

Flic2019

Well-Known Member
Messages
72
So i had my first diabetic doctors appointment yesterday and where i thought questions would be answered, i am only left with more She is confused as well basically.

They still cant say if its type 1 or type 2. One blood test came back with no antibodies (meaning type 2 im assuming) and the second test was inconclusive. I have been informed that there are around 4% of the diabetic population who have type 1 but have no presenting antibodies.

She said its 50/50 still between the two types. She says im not eating enough, and drinking enough so thats the next plan.

Even thought the HBA1C should be done after 90 days (its been about 40) she did it anyway. It started on 126 and is currently 87 but she wil do it again in three weeks to see whats happened.

She has told me to go onto contraceptive asap as a pregnancy could be detrimental right now (whatever - dont want kids anyway so doesnt bother me) and She has told me for the next three weeks to ONLY test once a day to see whats happening at the different intervals.

I know this has answered a few things, but im still so lost with it. She said my levels are okay. She sais dont worry for now unless they go over 15 (which they have hardly done)

The other thing is she has said if the levels dont straighten out, or if they cant determine what type it is they will start insulin in 3 weeks time to be safe.

I guess im just confused. Why cant they tell? And if it comes to it, can refuse insulin because unless i KNOW its type 1 i dont want to go down that route until the last minute :(
 

DCUKMod

Master
Staff Member
Messages
14,298
Type of diabetes
I reversed my Type 2
Treatment type
Diet only
So i had my first diabetic doctors appointment yesterday and where i thought questions would be answered, i am only left with more She is confused as well basically.

They still cant say if its type 1 or type 2. One blood test came back with no antibodies (meaning type 2 im assuming) and the second test was inconclusive. I have been informed that there are around 4% of the diabetic population who have type 1 but have no presenting antibodies.

She said its 50/50 still between the two types. She says im not eating enough, and drinking enough so thats the next plan.

Even thought the HBA1C should be done after 90 days (its been about 40) she did it anyway. It started on 126 and is currently 87 but she wil do it again in three weeks to see whats happened.

She has told me to go onto contraceptive asap as a pregnancy could be detrimental right now (whatever - dont want kids anyway so doesnt bother me) and She has told me for the next three weeks to ONLY test once a day to see whats happening at the different intervals.

I know this has answered a few things, but im still so lost with it. She said my levels are okay. She sais dont worry for now unless they go over 15 (which they have hardly done)

The other thing is she has said if the levels dont straighten out, or if they cant determine what type it is they will start insulin in 3 weeks time to be safe.

I guess im just confused. Why cant they tell? And if it comes to it, can refuse insulin because unless i KNOW its type 1 i dont want to go down that route until the last minute :(

Test at, different times, once a day, but only worry if it's over 15? I guess he thinking is if you were T1 you'd be consistently high, and likely climbing, but it isn't that simple. I don't know how she thinks you'll necessarily catch something at 15, testing once a day.

In your shoes, I'd want to keep diligently testing to get a better profile of how my body was working.

If insulin is started, and you do turn out to be T2, it could be, over time, that you could come off it. It'd all depend why you were seeing highs in the first place, and how your body was recovering.
 

JoKalsbeek

Expert
Messages
5,937
Type of diabetes
I reversed my Type 2
Treatment type
Diet only
So i had my first diabetic doctors appointment yesterday and where i thought questions would be answered, i am only left with more She is confused as well basically.

They still cant say if its type 1 or type 2. One blood test came back with no antibodies (meaning type 2 im assuming) and the second test was inconclusive. I have been informed that there are around 4% of the diabetic population who have type 1 but have no presenting antibodies.

She said its 50/50 still between the two types. She says im not eating enough, and drinking enough so thats the next plan.

Even thought the HBA1C should be done after 90 days (its been about 40) she did it anyway. It started on 126 and is currently 87 but she wil do it again in three weeks to see whats happened.

She has told me to go onto contraceptive asap as a pregnancy could be detrimental right now (whatever - dont want kids anyway so doesnt bother me) and She has told me for the next three weeks to ONLY test once a day to see whats happening at the different intervals.

I know this has answered a few things, but im still so lost with it. She said my levels are okay. She sais dont worry for now unless they go over 15 (which they have hardly done)

The other thing is she has said if the levels dont straighten out, or if they cant determine what type it is they will start insulin in 3 weeks time to be safe.

I guess im just confused. Why cant they tell? And if it comes to it, can refuse insulin because unless i KNOW its type 1 i dont want to go down that route until the last minute :(

I'm thinking testing once a day is a waste of a perfectly good teststrip, as it doesn't really tell you anything... At least if you test before a meal and 2 hours after it, you can tell whether your body's doing what its supposed to do, and how well it's doing it. (With T1 it wouldn't do much of anything to regulate it, I don't think. But then there's the honeymoonperiod to consider. And I know next to nothing about T1. So ignore this bit. @helensaramay , your input, before I put too much of a foot in my mouth?) But as with everything, it's up to you. You did get your HbA1c down considerably, but I am a little concerned about what you're eating... You posted about binging earlier, now it sounds like you've swung the other way and not eating enough? What does a typical day look like now, food-wise?

I do believe you have a say in whether or not you start insulin, as long as it's a "just in case" scenario, because if it is T1, there's not much choice anymore, as you need the stuff to live... But like the Mod said: You could come off it again later if it is T2.
Be gentle with yourself eh.
Jo
 
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SB.25

Well-Known Member
Messages
369
Type of diabetes
Other
Treatment type
Insulin
So i had my first diabetic doctors appointment yesterday and where i thought questions would be answered, i am only left with more She is confused as well basically.

They still cant say if its type 1 or type 2. One blood test came back with no antibodies (meaning type 2 im assuming) and the second test was inconclusive. I have been informed that there are around 4% of the diabetic population who have type 1 but have no presenting antibodies.

She said its 50/50 still between the two types. She says im not eating enough, and drinking enough so thats the next plan.

Even thought the HBA1C should be done after 90 days (its been about 40) she did it anyway. It started on 126 and is currently 87 but she wil do it again in three weeks to see whats happened.

She has told me to go onto contraceptive asap as a pregnancy could be detrimental right now (whatever - dont want kids anyway so doesnt bother me) and She has told me for the next three weeks to ONLY test once a day to see whats happening at the different intervals.

I know this has answered a few things, but im still so lost with it. She said my levels are okay. She sais dont worry for now unless they go over 15 (which they have hardly done)

The other thing is she has said if the levels dont straighten out, or if they cant determine what type it is they will start insulin in 3 weeks time to be safe.

I guess im just confused. Why cant they tell? And if it comes to it, can refuse insulin because unless i KNOW its type 1 i dont want to go down that route until the last minute :(
Hiya,

I am in exactly the same boat as you. At present they can’t diagnose me (or won’t diagnose me) as either T1 or T2. I am also anti body negative but my c peptide was low when I had it back in December. They have establish from my c peptide test that I produce very little of my own insulin. I’ve got to get my other c peptide results this week to see if the situation has changed. Do you know if you have had this test and what number it is?

I also initially refused insulin, but it was the best decision I made. Yes the carb counting is a bit annoying and having to inject a minimum of 4 times a day (for me anyway) - but it gave me my life back. Although I understand insulin is not the answer for everyone. I managed to get my diagnosis hba1c of 103 down to 59 in 5 months (I think?).

For now my records say insulin dependant, diabetic is rather than type 1 or 2.

Oh, and I was also tested for MODY which was negative. Perhaps you could ask if this could be tested? Although most MODY present before the age of 25 (I understand).

I also have self funded a Libre just so I can see what is going on over the course of a day - which has given me so much more insight.

Best of luck with everything!
 
D

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@JoKalsbeek thanks for the tag.
@Flic2019 I imagine the uncertainty must be incredibly frustrating.
Like others, I see very little point in testing once a day at different times. This gives you a little bit of data but no useful information.
For type 1, we tend to test to calculate insulin dose: either correction when too high or when eating. As you are not taking insulin, I would guess your nurse is assuming these tests are not needed.
As others have said, for type 2, you test to understand the impact of certain foods and to track your progress. In my mind, this makes sense.

Regarding levels - I can see the point about going over 15 being a problem as this is high and, with type 1, typically, the point when we become insulin resistant. However, there is a different between a brief visit to 15.2 and a constant reading above 10 ... I would be more worried about staying over 10 for a day or more.

As for taking insulin, I had no choice ... or rather, I had the choice of insulin or death and that kind of choice is quite motivating. However, I do not find insulin to be that much of a problem. It has become as much of my life as cleaning my teeth. I do it and do everything else I would do with or without diabetes. Insulin has not caused any weight gain or any other problem, the needles are tiny and they hurt even less than finger pricking. I have not been someone who hides away when I inject. I inject in public but I do not inject publicly ... I do it at the table but I do is discretely.

I hope you find out what is going on soon ... but don't panic about having type 1.
 
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Caeseji

Well-Known Member
Messages
658
Type of diabetes
Type 2
Treatment type
Diet only
Dislikes
Self-fellating idiots that don't at all look at other people's views
@Flic2019 I seriously hope you find out soon because the sooner you have a diagnosis the sooner you can act upon it and I am wishing you absolutely all the best.
 

NicoleC1971

BANNED
Messages
3,451
Type of diabetes
Type 1
Treatment type
Pump
Homeostatic model of insulin resistance test (HOMA -IR)is a good indicator of both insulin levels and glucose levels. i.e. how well is your body dealing with blood sugars? Normal blood glucose and high insulin+ insulin resistance
High blood sugars and high insulin= insulin resistance/type 2 whereas high blood glucose and low insulin would indicate some kind of type 1.
If you do still have working beta cells which it sounds as if you do because you are not taking insulin but do not have sky high blood sugars then it would be worth trying to preserve them via a low carb diet.
I am on insulin and whilst I can't remember not having to jab/pump the stuff in, trying to replace what my body used to do naturally is a lot harder and its tough getting blood sugars 'normal'.
Having said that I appreciate you may not be able to get this test on the NHS for some reason and for now your focus must be on feeling better and getting a feel for how your body is responding to different types of foods and after an overnight fast.