Newly diagnosed but confused!

[AmyW]

Hello everybody!
Recent HBA1c came back as 104, other than unexplained weight loss I haven’t had any other symptoms. GP isn’t clear whether it is type 1 or 2 (although I would say 2 more likely!) so he has commenced me on insulin. I was thinking that that was the right thing to do but from reading posts on here and speaking to a friends husband who was recently diagnosed (similar HBA1c) it seems that medication could have been a better option. Is there a hard and fast rule on initial treatment? I’m feeling very overwhelmed with everything, feel like it’s a death sentence currently and I’m struggling to be positive. I’m going to speak to my GP Monday as he’s going to give me a telephone call, I just wondered if anyone had any tips for speaking to him about thus, if it’s possible I don’t want to be taking insulin long term - he’s said about three months to start.

Thank you

 

[EllieM]

Welcome to the forums @AmyW

Well, if you are T1 then insulin in necessary short and long term, T1s don't produce any. The risk for undiagnosed T1s is that if you don't give them insulin they can very quickly deteriorate and get diabetic ketoacidosis, which kills fairly quickly without insulin and would need an unpleasant stay in hospital to treat. My guess (disclaimer I am not a doctor) is that your GP is putting you onto insulin because weight loss is another red flag for T1 and he wants to rule out T1 before trying you on other meds.

If you are T2 then that is a high starting hba1c but it is possible that you won't need insulin long term. Reducing the carbs in your diet is one way to reduce or eliminate meds for T2s.

But at thus stage you can't do much without a T1/T2 diagnosis. Has your GP sent away for the diagnostic blood tests (usually cpeptide and GAD antibodies).? The cpeptide determines how much insulin you are producing and the GAD test determines whether you have markers that show you are killing off your insulin producing cells.

Presumably your doctor has given you a blood testing meter and maybe also a meter for testing ketones? (Another red flag for T1 would have been if there were ketones in your urine on diagnosis).

In any case, the insulin won't do you any long term harm if you turn out to be T2, you can always stop taking it.

My tip for the Monday meeting would be for you to ensure he's doing the T1/T2 blood tests.

But as a long term insulin user (52 years) it's not that bad, just make sure you always carry sugar equivalent to treat low blood sugars.

Good luck.

 

[jjraak]

Hi @AmyW .

Oh dear, that sounds an awful place to be left .

But at the very least you now know there's an issue and action to help diagnose & control it is being proceeded with .

I really liked @EllieM reply

Strikes the perfect note on the insulin or not .

A great explanation of why & what you could do if it's not T1.

I'd also point out, I think you made a great choice seeking help online and in particular finding this forum .

Like minded people, knowledgeable in a "been there , done that " way..no bravado or BS.

Just a great group of fellow sufferers able & willing to answers questions, hand hold when needed & occasionally just relieve the natural fears and worries when any sort of illness affect us for the first time .

Proof, it's not the end of anyone's world,
Though many would have felt the same as you at DX.

Life throws us a curve ball now & then.
Some just sit back and let it defeat them.

The tougher ones get out there and find out as much as possible, then bat that curve ball outta the park.

I think you've shown which one you are

Best wishes & good luck with results .

 

[AmyW]

Thank you very much for this, I feel a bit more ready for the call today so hopefully he can answer my questions. When we first met I’d asked for advice around diet but he wasn’t so helpful and he said until he knows what is going on then he won’t refer me to see the nurse - I’m just using the forum which is helping! I’m just not feeling my positive self, still very much feel like is over because I just love food! I will also still be taking the insulin when I go on honeymoon which is another stress but I’m also grateful for life so I need to work on adapting it! Everyone here is so helpful, thank you! xx

Welcome to the forums @AmyW

Well, if you are T1 then insulin in necessary short and long term, T1s don't produce any. The risk for undiagnosed T1s is that if you don't give them insulin they can very quickly deteriorate and get diabetic ketoacidosis, which kills fairly quickly without insulin and would need an unpleasant stay in hospital to treat. My guess (disclaimer I am not a doctor) is that your GP is putting you onto insulin because weight loss is another red flag for T1 and he wants to rule out T1 before trying you on other meds.

If you are T2 then that is a high starting hba1c but it is possible that you won't need insulin long term. Reducing the carbs in your diet is one way to reduce or eliminate meds for T2s.

But at thus stage you can't do much without a T1/T2 diagnosis. Has your GP sent away for the diagnostic blood tests (usually cpeptide and GAD antibodies).? The cpeptide determines how much insulin you are producing and the GAD test determines whether you have markers that show you are killing off your insulin producing cells.

Presumably your doctor has given you a blood testing meter and maybe also a meter for testing ketones? (Another red flag for T1 would have been if there were ketones in your urine on diagnosis).

In any case, the insulin won't do you any long term harm if you turn out to be T2, you can always stop taking it.

My tip for the Monday meeting would be for you to ensure he's doing the T1/T2 blood tests.

But as a long term insulin user (52 years) it's not that bad, just make sure you always carry sugar equivalent to treat low blood sugars.

Good luck.

 

[AmyW]

Thank you! I’m really going to keep trying with it, I just feel a bit deflated and angry with everything. Im going to keep learning and going there, I can’t be sat here like a sad potato for the rest of my life!!

@AmyW .

Oh dear, that sounds an awful place to be left .

But at the very least you now know there's an issue and action to help diagnose & control it is being proceeded with .

I really liked @EllieM reply

Strikes the perfect note on the insulin or not .

A great explanation of why & what you could do if it's not T1.

I'd also point out, I think you made a great choice seeking help online and in particular finding this forum .

Like minded people, knowledgeable in a "been there , done that " way..no bravado or BS.

Just a great group of fellow sufferers able & willing to answers questions, hand hold when needed & occasionally just relieve the natural fears and worries when any sort of illness affect us for the first time .

Proof, it's not the end of anyone's world,
Though many would have felt the same as you at DX.

Life throws us a curve ball now & then.
Some just sit back and let it defeat them.

The tougher ones get out there and find out as much as possible, then bat that curve ball outta the park.

I think you've shown which one you are

Best wishes & good luck with results .

 

[catinahat]

very much feel like is over because I just love food!

There are plenty of old wrinklies of all types on this forum that also love food and are living proof that it is certainly not over.
Enjoy your honeymoon x

 

[jjraak]

Thank you! I’m really going to keep trying with it, I just feel a bit deflated and angry with everything. Im going to keep learning and going there, I can’t be sat here like a sad potato for the rest of my life!!

And all perfectly natural reactions
Shared by many, I'd bet

And good to recognise it & get it out there.

All this has knocked you off centre, but once you get your new bearings, you feel more like the old you I bet.,

As for being a foodie
I felt the same
But docs right T1 v T2 different approaches to foods ..sure chatting before being sure which one I was would have just confused me about foods to eat .


Sure there's s thread on here about what have you eaten today, full of fantastic looking & tasting food that's good for a lower BG level.

Tho I will admit diabetes does add time to prep, ready meals are less attractive as a T2D but I've found little of the ready meals I'd particularly want to eat now, knowing so much more about food & contents

But a decent meal, even I can get from fridge to plate in under 20 minutes is a nice alternative

Throw in the loss of that constant 'hunger' I seemed to have pre DX, and cooking becomes more of a joy then a chore, at least to me .


Noted the post above about honeymoon .

CONGRATULATIONS.
Go have a smashing time

And best of luck getting answers at your appointment

 

[ianstead]

Hello everybody!
Recent HBA1c came back as 104, other than unexplained weight loss I haven’t had any other symptoms. GP isn’t clear whether it is type 1 or 2 (although I would say 2 more likely!) so he has commenced me on insulin. I was thinking that that was the right thing to do but from reading posts on here and speaking to a friends husband who was recently diagnosed (similar HBA1c) it seems that medication could have been a better option. Is there a hard and fast rule on initial treatment? I’m feeling very overwhelmed with everything, feel like it’s a death sentence currently and I’m struggling to be positive. I’m going to speak to my GP Monday as he’s going to give me a telephone call, I just wondered if anyone had any tips for speaking to him about thus, if it’s possible I don’t want to be taking insulin long term - he’s said about three months to start.

Thank you

Hi
I was thought to be type 2 for about a year until a new doctor did a blood test and it was discovered that I actually had type 1.
So the Metformin I had been taking was a waste of time and I have been on insulin for a few years now. I am on an insulin pump (omnipod) and this has given me a lot more freedom than daily injections. My advice would be to ask your doctor for a blood test to confirm what type of diabetes you have.

 

[JAS23471]

Hello everybody!
Recent HBA1c came back as 104, other than unexplained weight loss I haven’t had any other symptoms. GP isn’t clear whether it is type 1 or 2 (although I would say 2 more likely!) so he has commenced me on insulin. I was thinking that that was the right thing to do but from reading posts on here and speaking to a friends husband who was recently diagnosed (similar HBA1c) it seems that medication could have been a better option. Is there a hard and fast rule on initial treatment? I’m feeling very overwhelmed with everything, feel like it’s a death sentence currently and I’m struggling to be positive. I’m going to speak to my GP Monday as he’s going to give me a telephone call, I just wondered if anyone had any tips for speaking to him about thus, if it’s possible I don’t want to be taking insulin long term - he’s said about three months to start.

Thank you

I'm type 2 and was recommended for insulin injections to start me off as my sugar levels were too high and was likely diabetic for a while before diagnosis. The reason was because insulin works immediately and I've been on tablets since then. T1 is when you have diabetes as a child and T2 is when you develop it later. Hope that helps.

 

[JMK1954]

Welcome to the forums. Have a good read around, there's a load of useful info on here.
I think we need to make it clear that you can develop type 1 diabetes at any age ! I was diagnosed just after my tenth birthday, my brother was around 22 and at university. People on this forum have been diagnosed type 1 at all sorts of ages, 40s, 30s, 60s. The idea that type 1 only develops in childhood is definitely outdated.

 

[MimB]

Hi @AmyW
I was only diagnosed last Friday with an HBC1a of 115 and had a hospital stay 3 days before my results actually came back to the GP so I have been on insulin since last Friday so this is day 11.
I was admitted with BG of 27 and ketones 6 I've now had 2 days of normal bloods levels of between 5 and 8 and so really pleased
it is ok to feel down I had a cry in the hospital but then lots of people told me about others with Type 1 including pilots and Theresa May and I thought well if she can run the country with type 1 then I can run my life!!
Organising a wedding is stressful anyway so one you are on your honeymoon you can relax, chat with your husband about the next phase of your new life and embrace the challenges.

 

[AmyW]

Thank you, I’m really trying! I’m just feeling disheartened because using the insulin last week brought my sugars right down and I’ve really addressed what I’m eating. However since Saturday, nothing is bringing them down and they keep getting higher. My GP said not to worry but I can’t do anything but! He’s increased everything slightly but my readings are still 14/15/16 and don’t seem to be responding to insulin or food!

Hi @AmyW
I was only diagnosed last Friday with an HBC1a of 115 and had a hospital stay 3 days before my results actually came back to the GP so I have been on insulin since last Friday so this is day 11.
I was admitted with BG of 27 and ketones 6 I've now had 2 days of normal bloods levels of between 5 and 8 and so really pleased
it is ok to feel down I had a cry in the hospital but then lots of people told me about others with Type 1 including pilots and Theresa May and I thought well if she can run the country with type 1 then I can run my life!!
Organising a wedding is stressful anyway so one you are on your honeymoon you can relax, chat with your husband about the next phase of your new life and embrace the challenges.

 

[JMK1954]

Let's face it. It's easy for doctors to say, 'Don't worry, but if you weren't worrying there would definitely be something wrong with your brain ! We all worry and get anxious when facing a situation which is uncertain and we can't be sure what will happen. That's perfectly normal.

Rather than tell you not to worry, I would say try not to panic. Are you reporting your test results to your doctor ? Everything you can tell them - about what you are eating and what your test results are - will help them build a better picture of what is going on. As Ellie said, unexplained weight loss is a red flag for type 1. They will need to do a C- peptide blood test to check how much insulin you are actually producing before reaching a decision. Did you ask if they have run the test already or when they plan to ?

I'm one of the old wrinklies referred to above, ie.I've had this annoying condition for 58 years and counting. If you're worried - ask. Bother your GP or ask on here. Doctors are always busy., but you have a genuine reason for concern. Ask the receptionist to pass on a message about what concerns you and ask if the doctor can ring you back. Hope things get sorted rapidly for you. Best wishes.

 

[AmyW]

Thank you!
I am panicking but speaking to him tomorrow so hopefully he can offer some further guidance. I’m fortunate that the surgery have prescribed me the freestyle LibreLink and I update it constantly, with what I’ve eaten and if I’ve weighed it etc I’m. It sure I could put in any more information! He had said to aim for six scans per day but I’m averaging about 45 :***: I’m going to double double check what bloods he’s requested, I’m sure the one to determine which type it is has already been sent off and it’s just a case of waiting. I think I need to put my work head on and advocate for myself better, I do it for the people I work with to ensure they get the care they need but I’m not doing so good at doing it myself! Everyone here is very very helpful!

Let's face it. It's easy for doctors to say, 'Don't worry, but if you weren't worrying there would definitely be something wrong with your brain ! We all worry and get anxious when facing a situation which is uncertain and we can't be sure what will happen. That's perfectly normal.

Rather than tell you not to worry, I would say try not to panic. Are you reporting your test results to your doctor ? Everything you can tell them - about what you are eating and what your test results are - will help them build a better picture of what is going on. As Ellie said, unexplained weight loss is a red flag for type 1. They will need to do a C- peptide blood test to check how much insulin you are actually producing before reaching a decision. Did you ask if they have run the test already or when they plan to ?

I'm one of the old wrinklies referred to above, ie.I've had this annoying condition for 58 years and counting. If you're worried - ask. Bother your GP or ask on here. Doctors are always busy., but you have a genuine reason for concern. Ask the receptionist to pass on a message about what concerns you and ask if the doctor can ring you back. Hope things get sorted rapidly for you. Best wishes.

 

[AmyW]

Thank you!
I have to say so far everything is an education, I am definitely learning a lot about Diabetes - irrespective of type!

Welcome to the forums. Have a good read around, there's a load of useful info on here.
I think we need to make it clear that you can develop type 1 diabetes at any age ! I was diagnosed just after my tenth birthday, my brother was around 22 and at university. People on this forum have been diagnosed type 1 at all sorts of ages, 40s, 30s, 60s. The idea that type 1 only develops in childhood is definitely outdated.

 

[AmyW]

I feel nervous they are going to get it wrong, misdiagnosis doesn’t seem as uncommon as you’d hope! I’m just waiting for the bloods to come back, so hopefully I will know soon!

Hi
I was thought to be type 2 for about a year until a new doctor did a blood test and it was discovered that I actually had type 1.
So the Metformin I had been taking was a waste of time and I have been on insulin for a few years now. I am on an insulin pump (omnipod) and this has given me a lot more freedom than daily injections. My advice would be to ask your doctor for a blood test to confirm what type of diabetes you have.

 

[Zilsniggy]

I'm type 2 and was recommended for insulin injections to start me off as my sugar levels were too high and was likely diabetic for a while before diagnosis. The reason was because insulin works immediately and I've been on tablets since then. T1 is when you have diabetes as a child and T2 is when you develop it later. Hope that helps.

T1 doesn't always develop as a child, some people are now being diagnosed at a much later age. PLENTY of adults are now being diagnosed T1 since blood tests are now able to detect things such as GAD antibodies, and so forth. children are also now being diagnosed as Type 2, but this appears more due to lifestyle issues, less exercisae, poor diet etc.

 

[Niamh1]

Hi
I was thought to be type 2 for about a year until a new doctor did a blood test and it was discovered that I actually had type 1.
So the Metformin I had been taking was a waste of time and I have been on insulin for a few years now. I am on an insulin pump (omnipod) and this has given me a lot more freedom than daily injections. My advice would be to ask your doctor for a blood test to confirm what type of diabetes you have.

Hi ianstead how did you get the inslin pump

 

[Niamh1]

T1 doesn't always develop as a child, some people are now being diagnosed at a much later age. PLENTY of adults are now being diagnosed T1 since blood tests are now able to detect things such as GAD antibodies, and so forth. children are also now being diagnosed as Type 2, but this appears more due to lifestyle issues, less exercisae, poor diet etc.

you are right about the type 1 diagnosed part I was diagnosed at 30