VERY high hbac1

[Je21]

Hi
(This is long I am sorry)

I am newly diagnosed T2 diabetes (4 days ago) I was experiencing classic symptom of excessive thirst and peeing a lot. Looking back I had other symptoms such as my hair thinning but I put this down to stress etc. I got a hbac1 test with a chemist and it was incredibly high (almost 160). I then (when I got the results back) saw the nurse at my local GP l, she did the finger prick and my reading was 19 (I had only had a cup of tea) and she diagnosed me with T1 due to there being ketones present, she sent me to hospital and told me that I would need insulin. When I got to hospital they (after a wait in a+e)took my blood pressure and did the finger prick again. I didn’t see the result of the blood glucose but my blood pressure was high (around 130/85). I was then put onto an IV drip and after an hour or so they took the glucose and blood pressure again. My glucose had fallen slightly, as I’d been sat there a few hours with nothing to eat, but my blood pressure had gone up again (140!). I eventually got to see a consultant and he diagnosed me with T2 because my hba1c was so high and he gave me 2 weeks of metformin and told me I would need to contact my GP/nurse. I wasn’t really given much more information than this.

I am of course shocked and devastated. I am only 26 years old, I am not overweight and I exercise regularly. I don’t smoke and have never been a smoker. I do drink but not excessively. It isn’t in my immediate family. I do eat well, however I do have a sweet tooth. Did I do this by consuming too much sugar/carbs?

I have browsed through some threads on here and a lot of people do the Keto diet, however I’m getting mixed information regarding how ketones affect people with diabetes. I have found information saying that if you have ketones and exercise then this can spike your blood sugar levels?

I have been taking the metformin twice a day(I am on day 5), I have had some diarrhoea in the morning. I am also getting headaches, do you think this could be stress or sugar withdrawal as I’ve cut junk out. My levels are still high (17) on the reader. Do you think it is possible to get my bloods under control as the result was SO high and I am still fairly young. I am also concerned about the blood pressure.

Very sorry for the essay, I am just new to all of this and the Dr didn’t really explain

 

[ert]

You need proper tests for the correct diagnosis. You qualify for a referral pathway (in the UK) by your age and if your BMI is below 25. Phone tomorrow and ask to see a specialist. You still may need insulin to bring your levels down if your blood sugar doesn't change with diet.

Ketones at the higher end of the nutritional range are dangerous if your body has stopped producing normal amounts of insulin, and you are ill, and your blood sugars are constantly over 13 mmol/l. It can lead to your blood pH changing if ketone levels rapidly rise out of control which is DKA. This is why you need to get a proper diagnosis (a c-peptide test) to find out how much insulin you are producing. They also test for antibodies such as GAD as type 1 is an autoimmune illness. Type 1's are given a ketone meter to monitor levels when unwell.

I took metformin in the first weeks of my diagnosis while waiting for test results, but was advised to build the dose slowly so took on a tablet every second day, and slowly increased my dose to two tablets a day over a few weeks to avoid side effects. I stopped taking it because I was told it wasn't helping me as a thin type 1.

 

[Antje77]

Hi @Je21 , and welcome to the forum!

I eventually got to see a consultant and he diagnosed me with T2 because my hba1c was so high

I'm afraid hba1c is not a tool to tell T1 from T2.
Do you know if you've had your C-peptide tested as well to make him make this diagnosis? That test would tell you something about the amount of insulin you produce, and can be a help in differentiating between the types.

I am only 26 years old, I am not overweight

This would be reason to thoroughly check for type.
Please, for now, keep a close eye on your blood glucose, as it looks like they've given you a meter.
Should you develop a stomach ache or nausea, don't hesitate to go back to A+E. While this can be a side effect from the metformin, it can also be a symptom of ketoacidosis, or DKA, which is likely what you've read about in regards to the ketones.

I have browsed through some threads on here and a lot of people do the Keto diet, however I’m getting mixed information regarding how ketones affect people with diabetes. I have found information saying that if you have ketones and exercise then this can spike your blood sugar levels?

For T2's, a keto diet can be very effective to treat diabetes! However, it's never adviced to do serious exercise with high blood glucose, say over 15, so don't overdo it right now.
For T1's, it's alarming to see both ketones and high BG's at the same time. For now, I'd reduce carbs, but I wouldn't go fully keto at the moment.

Did I do this by consuming too much sugar/carbs?

No, you didn't. If you have T2, it's impossible to eat yourself into it without a very strong disposition. If you have T1, food has even less to do with it than with T2.

I'd urge your doctor to refer you for a second opinion, and don't hesitate to go to A+E if you feel unwell or are seeing ketones again.

Wish you all the best, and keep us updated!

 

[Je21]

You need proper tests for the correct diagnosis. You qualify for a referral pathway (in the UK) by your age and if your BMI is below 25. Phone tomorrow and ask to see a specialist. You still may need insulin to bring your levels down if your blood sugar doesn't with diet.

Ketones at the higher end of the nutritional range are dangerous if your body has stopped producing normal amounts of insulin, and you are ill, and your blood sugars are constantly over 13 mmol/l. It can lead to your blood pH changing if they rapidly rise out of control which is DKA. This is why you need to get a proper diagnosis (a c-peptide test) to find out how much insulin you are producing. They also test for antibodies such as GAD as type 1 is an autoimmune illness. Type 1's are given a ketone meter to monitor levels when unwell.

I took metformin in the first weeks of my diagnosis while waiting for test results, but was advised to build the dose slowly so took on a tablet every second day, and slowly increased my dose to two tablets a day over a few weeks to avoid side effects. I stopped taking it because I was told it wasn't helping me as a thin type 1.

Thank-you for replying!

Would I just contact my regular GP and ask for a referral or an appointment for a C-Peptide? I have phoned today to book a follow up appointment (as advised by the dr at the hospital as he only have 2 weeks of metformin) and the receptionist was very unhelpful and booked a phone appointment for 2 weeks time. I don’t know what exactly the Dr would do over the phone??

When I initially saw the nurse at the practice she gave me a ketone and blood monitor as she suspected T1. However the pricker(idk what it’s called lol) doesn’t work well at all and the machine says ‘error’ so I have been unable to monitor ketones. I have only been able to check my glucose levels via a relative’s machine which doesn’t do the ketones.

I feel very in the dark about everything, and I know it sounds silly but I feel embarrassed.

 

[Je21]

I didn’t have any bloods taken at the GP or the hospital so no I don’t think I had a C-Pepside? It wasn’t mentioned to me at all.

The Dr at the hospital said based on my age and my Hba1c result that it was likely T2, and sort of gave me the metformin and sent me on my way

 

[Je21]

And yes I am 5ft5 and weigh 9st7lbs, so my Bmi falls around 22/23

 

[ert]

Thank-you for replying!

Would I just contact my regular GP and ask for a referral or an appointment for a C-Peptide? I have phoned today to book a follow up appointment (as advised by the dr at the hospital as he only have 2 weeks of metformin) and the receptionist was very unhelpful and booked a phone appointment for 2 weeks time. I don’t know what exactly the Dr would do over the phone??

When I initially saw the nurse at the practice she gave me a ketone and blood monitor as she suspected T1. However the pricker(idk what it’s called lol) doesn’t work well at all and the machine says ‘error’ so I have been unable to monitor ketones. I have only been able to check my glucose levels via a relative’s machine which doesn’t do the ketones.

I feel very in the dark about everything, and I know it sounds silly but I feel embarrassed.

It's a lancet but I also call it a finger pricker You need a bigger bubble of blood on the ketone strip to get a reading. Try squeezing the sides of your finger. You will need a specialist to organise the c-peptide and antibody tests as GP's don't do them. You may need to be pushy when you phone the GP tomorrow and point out you qualify for a referral.
see page 4:
https://www.england.nhs.uk/rightcar...40/2018/07/nhs-rightcare-pathway-diabetes.pdf

 

[Antje77]

I feel very in the dark about everything, and I know it sounds silly but I feel embarrassed.

Please don't feel embarrassed!
You've been thrown in the dark with your diagnosis, and now a bunch of strangers on some forum are telling you the doctor may have been wrong too! I can't even imagine how bewildered you must be right now.

When I initially saw the nurse at the practice she gave me a ketone and blood monitor as she suspected T1. However the pricker(idk what it’s called lol) doesn’t work well at all and the machine says ‘error’ so I have been unable to monitor ketones. I have only been able to check my glucose levels via a relative’s machine which doesn’t do the ketones.

Do you still have your relative's glucose meter to use? If so, use the pricker from that one, and set it a bit deeper to get more blood.
Also, don't squeeze the fingertip but start at the palm of your hand and push the blood up towards your finger, works much better to get enough blood.

 

[Grant_Vicat]

Hi
(This is long I am sorry)

I am newly diagnosed T2 diabetes (4 days ago) I was experiencing classic symptom of excessive thirst and peeing a lot. Looking back I had other symptoms such as my hair thinning but I put this down to stress etc. I got a hbac1 test with a chemist and it was incredibly high (almost 160). I then (when I got the results back) saw the nurse at my local GP l, she did the finger prick and my reading was 19 (I had only had a cup of tea) and she diagnosed me with T1 due to there being ketones present, she sent me to hospital and told me that I would need insulin. When I got to hospital they (after a wait in a+e)took my blood pressure and did the finger prick again. I didn’t see the result of the blood glucose but my blood pressure was high (around 130/85). I was then put onto an IV drip and after an hour or so they took the glucose and blood pressure again. My glucose had fallen slightly, as I’d been sat there a few hours with nothing to eat, but my blood pressure had gone up again (140!). I eventually got to see a consultant and he diagnosed me with T2 because my hba1c was so high and he gave me 2 weeks of metformin and told me I would need to contact my GP/nurse. I wasn’t really given much more information than this.

I am of course shocked and devastated. I am only 26 years old, I am not overweight and I exercise regularly. I don’t smoke and have never been a smoker. I do drink but not excessively. It isn’t in my immediate family. I do eat well, however I do have a sweet tooth. Did I do this by consuming too much sugar/carbs?

I have browsed through some threads on here and a lot of people do the Keto diet, however I’m getting mixed information regarding how ketones affect people with diabetes. I have found information saying that if you have ketones and exercise then this can spike your blood sugar levels?

I have been taking the metformin twice a day(I am on day 5), I have had some diarrhoea in the morning. I am also getting headaches, do you think this could be stress or sugar withdrawal as I’ve cut junk out. My levels are still high (17) on the reader. Do you think it is possible to get my bloods under control as the result was SO high and I am still fairly young. I am also concerned about the blood pressure.

Very sorry for the essay, I am just new to all of this and the Dr didn’t really explain

No need to apologise for writing a lot - if it helps, great. No need to feel embarrassed either. Here is a description of the effects ketoacidosis (DKA) used to have on me:
Ketostix would be dipped into the urine to see the result. I would always know when I was in ketosis, because my breathing became very laboured, all my muscles felt as though I had run ten miles and performed fifty press-ups, I had an overwhelming feeling of nausea, would drink vast amounts of water without slaking my thirst, would shun social contact, and my family would notice the all too familiar reek of nail polish remover or pear drops. In later years I realised that it would cloud my vision.
If you feel anything like the main details of this, I would forget going to the GP, but just dial 111. Certainly don't hang on for 2 weeks if you feel bad. Very best of luck

 

[EllieM]

If you can't get the ketone testing to work on the glucometer, you can buy urine testing strips for ketones from the chemist. If these read high with high bgs I'd ring 111.

 

[Andydragon]

Hi
(This is long I am sorry)

I am newly diagnosed T2 diabetes (4 days ago) I was experiencing classic symptom of excessive thirst and peeing a lot. Looking back I had other symptoms such as my hair thinning but I put this down to stress etc. I got a hbac1 test with a chemist and it was incredibly high (almost 160). I then (when I got the results back) saw the nurse at my local GP l, she did the finger prick and my reading was 19 (I had only had a cup of tea) and she diagnosed me with T1 due to there being ketones present, she sent me to hospital and told me that I would need insulin. When I got to hospital they (after a wait in a+e)took my blood pressure and did the finger prick again. I didn’t see the result of the blood glucose but my blood pressure was high (around 130/85). I was then put onto an IV drip and after an hour or so they took the glucose and blood pressure again. My glucose had fallen slightly, as I’d been sat there a few hours with nothing to eat, but my blood pressure had gone up again (140!). I eventually got to see a consultant and he diagnosed me with T2 because my hba1c was so high and he gave me 2 weeks of metformin and told me I would need to contact my GP/nurse. I wasn’t really given much more information than this.

I am of course shocked and devastated. I am only 26 years old, I am not overweight and I exercise regularly. I don’t smoke and have never been a smoker. I do drink but not excessively. It isn’t in my immediate family. I do eat well, however I do have a sweet tooth. Did I do this by consuming too much sugar/carbs?

I have browsed through some threads on here and a lot of people do the Keto diet, however I’m getting mixed information regarding how ketones affect people with diabetes. I have found information saying that if you have ketones and exercise then this can spike your blood sugar levels?

I have been taking the metformin twice a day(I am on day 5), I have had some diarrhoea in the morning. I am also getting headaches, do you think this could be stress or sugar withdrawal as I’ve cut junk out. My levels are still high (17) on the reader. Do you think it is possible to get my bloods under control as the result was SO high and I am still fairly young. I am also concerned about the blood pressure.

Very sorry for the essay, I am just new to all of this and the Dr didn’t really explain

Hi there

Excessive urination and thirst and your blood levels being that high are all tied together in a way. Your body wants rid of the excess glucose so it does it in the best way it can. The high bloods also lead to ketones. Do you know what sort of level the pharmacist saw?

The IV drip will be to help with the dehydration I am guessing, again excessive urination leads to that.

Also your BP is higher, but not technically in the "high" range, but given stress, hospitals etc. It's not really surprising yours may have been higher but something to monitor of course

Metformin on its own, without diet changes (and maybe not even then) at your levels may make a difference but your levels are high so may not be that high. No improvement or worsening again, needs flagging. So, Are you finding your levels are dropping at all from them? I know you said you are testing, are you seeing any drop at all?

Keep monitoring, contact your doctor/A&E if you are at all worried. Ketone test strips as @EllieM said

Your age, and BMI are a path to be tested in my opinion to make sure it is T2 as treatments are different. Have you lost weight at all recently? (T2 can lose also and I personally did due to my levels on diagnosis but is another trigger or should be, to test for that).

I was just over 30 when diagnosed and I had the high hba1c, and weight loss and the tests were inconclusive for T1, but drugs addressed my levels and so T2 was diagnosed. So it is possible to be either, but you need to know

You are rightfully concerned. We don't diagnose but doctors shouldn't fob you off.

Good luck and keep us informed

 

[Je21]

Hi there

Excessive urination and thirst and your blood levels being that high are all tied together in a way. Your body wants rid of the excess glucose so it does it in the best way it can. The high bloods also lead to ketones. Do you know what sort of level the pharmacist saw?

My ketones with the nurse were at 1.4, and my bloods at 20.

The IV drip will be to help with the dehydration I am guessing, again excessive urination leads to that.

Also your BP is higher, but not technically in the "high" range, but given stress, hospitals etc. It's not really surprising yours may have been higher but something to monitor of course

Metformin on its own, without diet changes (and maybe not even then) at your levels may make a difference but your levels are high so may not be that high. No improvement or worsening again, needs flagging. So, Are you finding your levels are dropping at all from them? I know you said you are testing, are you seeing any drop at all?

I haven’t been able to test regularly due to the monitor not working.
Yesterday I ate a small bowl of shreddies in the morning(I know this is high carb but there was nothing else in) I had some fish at lunch time, I did a workout around 430 and tested them a bit afterwards and they were 17 This was before I ate my evening meal. I didn’t test after

Keep monitoring, contact your doctor/A&E if you are at all worried. Ketone test strips as @EllieM said

I am going to try and contact the nurse at the GP I think.

Your age, and BMI are a path to be tested in my opinion to make sure it is T2 as treatments are different. Have you lost weight at all recently? (T2 can lose also and I personally did due to my levels on diagnosis but is another trigger or should be, to test for that).

I hadnt really lost any weight ,maybe a lb or 2 but I had an increased appetite.

I was just over 30 when diagnosed and I had the high hba1c, and weight loss and the tests were inconclusive for T1, but drugs addressed my levels and so T2 was diagnosed. So it is possible to be either, but you need to know

Can I ask what your hba1c levels were? Mine are crazy high, I can’t get over it.

You are rightfully concerned. We don't diagnose but doctors shouldn't fob you off.

Good luck and keep us informed

Thank-you Xx

(mod edit for clarity)

 

[Andydragon]

Hi, some of your replies got lost in the quote.

I don't know what my initial hba1c was back in the day as its over a decade ago. (I do have a family history of T2 though) I do know the doctor phoned me and told me to make an immediate appointment and that he would move any appointments he had. I suspect it must have been pretty high. I was also immediately referred to the hospital. Metformin has a small effect but not enough,. I was put on Byetta daily injection (which was a brand new drug at the time) which addressed by levels as metformin on its own didn't do lot (For many years I didn't change my way of eating, I had no idea about low carbs until a year ago). So I jumped straight to second line treatment.

I was tested for T1 I suspect as I was told age, and weight loss was unusual but was told it was inconclusive. But as my bloods corrected, T2 was the right thing

Ketones: https://www.nhs.uk/conditions/diabetic-ketoacidosis/

Your reading of 1.4 is slightly increased risk, but not super high, but you need to keep testing both ketones and blood glucose. Lowering carbs, monitor before and after and it might improve actually quite quickly. But, Shreddies higher carbs aren't going to help. You need to test before and then after, at your current levels hard to see amongst all the noise to be honest.

Yes the levels are high, but can be brought down. I believe people have had higher and still gone into remission. But confirming T1 or 2 is a starting point I think here. The treatments for T2 are different.

 

[Je21]

Hi, some of your replies got lost in the quote.
.

Sorry I am still figuring out how to use this Xx

I need to get either a new reader for ketones. I think the one I have been given is duff. However I will try and get a new finger prick first.

For my evening meal last night I had leafy salad with salmon tomatoes red pepper and avocado and sprinkle of cheese, with full fat mayo as the low fat one had more carbs. This is the last thing I ate around 7.30

This morning my bloods were 16.

I have been a pescatarian for a while and eat a lot of veggie foods which I think are maybe more starchy. I am thinking of introducing Turkey/chicken into my diet just so I have more options. Do you think 30g of carbs is a good amount per day? Or is this still too high for my readings?

 

[Andydragon]

Sorry I am still figuring out how to use this Xx

I need to get either a new reader for ketones. I think the one I have been given is duff. However I will try and get a new finger prick first.

For my evening meal last night I had leafy salad with salmon tomatoes red pepper and avocado and sprinkle of cheese, with full fat mayo as the low fat one had more carbs. This is the last thing I ate around 7.30

This morning my bloods were 16.

I have been a pescatarian for a while and eat a lot of veggie foods which I think are maybe more starchy. I am thinking of introducing Turkey/chicken into my diet just so I have more options. Do you think 30g of carbs is a good amount per day? Or is this still too high for my readings?

Low carb is generally classed as < 130g a day
30g a day is into very low carb, some on the forums do that. It's your choice

Your levels are clearly high but it sounds like they have dropped a little bit, which is good.
But, if it were me I would definitely be chasing the doctors and others for more support. Given you were initially diagnosed as T1 but didn't get that confirmed I would be pushing to get that properly confirmed. Maybe contacting the hospital to ask what tests they did on you could help, in the rush and stress of going to the hospital it can be easy to not take it all in. You did fall under the t1 guidelines so seems reasonable to ask how exactly the specialist team ruled that out

https://cks.nice.org.uk/topics/diabetes-type-1/diagnosis/diagnosis-adults/

Waiting 2 weeks for a follow up given this feels a bit long to me

 

[Je21]

Low carb is generally classed as < 130g a day
30g a day is into very low carb, some on the forums do that. It's your choice

Your levels are clearly high but it sounds like they have dropped a little bit, which is good.
But, if it were me I would definitely be chasing the doctors and others for more support. Given you were initially diagnosed as T1 but didn't get that confirmed I would be pushing to get that properly confirmed. Maybe contacting the hospital to ask what tests they did on you could help, in the rush and stress of going to the hospital it can be easy to not take it all in. You did fall under the t1 guidelines so seems reasonable to ask how exactly the specialist team ruled that out

https://cks.nice.org.uk/topics/diabetes-type-1/diagnosis/diagnosis-adults/

Waiting 2 weeks for a follow up given this feels a bit long to me

I can’t even get past the receptionist at my GP, they’re truly awful. I have only been offered phone appointments which, eh?

 

[Je21]

I can’t even get past the receptionist at my GP, they’re truly awful. I have only been offered phone appointments which, eh?

So after phoning (again)I have managed to get a new finger prick/lancet which is working much better, my machine monitors keto levels but I haven’t been given the strips for this so I will have to get some.
I ended up having a bit of Greek yoghurt for breakfast, Turkey salad with no dressing for lunch and when I got home around 6pm my level was 10.7. I took a friends dog out for around 1h40 and some of it was a bit hilly. When I returned my bloods were 11.4? Has this gone up because of the exercise? I have now eaten another big salmon salad, I feel like I have a headache whenever I start to eat anything is this normal?

 

[VashtiB]

Well I'm glad that your levels have dropped that is great. I still agree that getting the tests to rule out type 1 or finding out on what basis they ruled out type 1 is something to continue pursuing. A misdiagnosis can be dangerous.

However, if you are a type 2 then what you are doing is already showing some results so that is good. As a type 2 myself the amount of carbs can vary immensely between people. I generally stick to less than 10 grams a day but I'm pretty extreme.

Your meter is the thing that will let you know. It will also take some time to see a drop in the morning level- google dawn phenomena

BUT keep testing regularly until you have made sure that you have been correctly diagnosed as a type 2.

Welcome!

 

[ianf0ster]

I ended up having a bit of Greek yoghurt for breakfast, Turkey salad with no dressing for lunch and when I got home around 6pm my level was 10.7. I took a friends dog out for around 1h40 and some of it was a bit hilly. When I returned my bloods were 11.4? Has this gone up because of the exercise? I have now eaten another big salmon salad, I feel like I have a headache whenever I start to eat anything is this normal?

Hi @Je21
It's usually only vigorous exercise which raises Blood Glucose (in a T2. For most people, walking a dog wouldn't be vigorous enough to do that, however because your Blood Glucose was so high, it is likely that your body has grown accustomed to what are actually really bad glucose levels and so feels the need to pump more into your blood whenever it falls 'abnormally low'.
If this is the case then it will start to adjust to the ' new normal levels ' and you should see a difference in a couple of weeks.

There is a thing called 'Keto flu or Atkins flu' which some people experience when going Low Carb or Keto. It is due to less fluid retention ( carbs retain fluid in the body). So when eating Low carb the water flushed out isn't just water, it contains electrolytes too which means you can become too low in Sodium, Potassium and Magnesium (at least for a while. Many use either 'bone broth' or electrolyte supplements in order to get over the 'hump' until the body gets adjusted to the much lower carb intake.

 

[Je21]

Hi @Je21
It's usually only vigorous exercise which raises Blood Glucose (in a T2. For most people, walking a dog wouldn't be vigorous enough to do that, however because your Blood Glucose was so high, it is likely that your body has grown accustomed to what are actually really bad glucose levels and so feels the need to pump more into your blood whenever it falls 'abnormally low'.
If this is the case then it will start to adjust to the ' new normal levels ' and you should see a difference in a couple of weeks.

There is a thing called 'Keto flu or Atkins flu' which some people experience when going Low Carb or Keto. It is due to less fluid retention ( carbs retain fluid in the body). So when eating Low carb the water flushed out isn't just water, it contains electrolytes too which means you can become too low in Sodium, Potassium and Magnesium (at least for a while. Many use either 'bone broth' or electrolyte supplements in order to get over the 'hump' until the body gets adjusted to the much lower carb intake.

Ah, I see! Yes they are very high, I’m annoyed I didn’t get this checked sooner but here we are.

I am finding the levels are coming down (slowly). Before bed last night (just past midnight) my reading was 14.3, at 9.40am this morning they were 12.7 (before breakfast). Of course, this is still high but just over a week ago they were at 20.

Oh thank-you! I will look into this and see if my headaches lift.


Do you think if my levels are slowly coming down with diet changes/metformin then it is likely type 2? Should I still request a C-Pep? I am going to mention it to the nurse of course.