Hello. Quite newly diagnosed. High HbA1C levels.

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5 A Day

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Hello everyone

I was diagnosed end of Sep with type 2 diabetes.
Main symtoms were fatigue and recurring UTI's. Was also diagnosed with Hasimotos disease and under active tyroid at the same time.
At my diagnosis my HbA1C level was 98.
Ive been on meds for 3 months now and diet changed, but at my 3 monthly review, my HbA1C level is now 125.
I have had repeat UTI's (4 or 5 since Sep)
I am extremely fatigued, my life has totally changed because of this.
Am waiting to hear from diabetes specialist as to what medication I need to move onto, and in the mean time I have to double the dose of my metformin.

Has this happened to anyone else. Is this quite normal when newly diagnosed?

Thanksnfor taking the time to read. ❤️
 
Hello everyone

I was diagnosed end of Sep with type 2 diabetes.
Main symtoms were fatigue and recurring UTI's. Was also diagnosed with Hasimotos disease and under active tyroid at the same time.
At my diagnosis my HbA1C level was 98.
Ive been on meds for 3 months now and diet changed, but at my 3 monthly review, my HbA1C level is now 125.
I have had repeat UTI's (4 or 5 since Sep)
I am extremely fatigued, my life has totally changed because of this.
Am waiting to hear from diabetes specialist as to what medication I need to move onto, and in the mean time I have to double the dose of my metformin.

Has this happened to anyone else. Is this quite normal when newly diagnosed?

Thanksnfor taking the time to read. ❤️
Welcome to the forum
This suggests that metformin is not adequate medication if you have made dietary changes and your HbA1C has actually gone up. Have you also lost weight as if so that could be sending a red flag up for a Type 1 or LADA diagnosis. UTis are a common symptom of high blood glucose and so is extreme fatigue.
I would suspect that even an increased dose of metformin will not be enough.
Would you like to give some examples of typical meals.

With such high blood glucose do you have a means of testing for ketones as high blood glucose and ketones is a dangerous combination and needs immediate attention. Ketone urine dip sticks can be bought at the pharmacy.
 
Ok, high a1c, not reduced by meds, history of autoimmune disease...
Have you also lost weight by any chance?
Have they done the tests for type 1? Because the above may suggest type1

Either way, the docs should be acting quickly to do something to start bringing those levels down. We're talking within days not weeks there. (Those are the sorts of levels were they sent me straight to A&E)
And i don't think metformin will be enough.
Also, do you have a means of checking for ketones?
 
Hello, thanks for the reply. I have not lost any weight, maybe a few lb's from watching my diet. I have not heard of LADA? Also not heard of checking the Ketones. These are both something I will be reading abiut this evening. What benefit does it have checking the ketones? I appreciate your help and guidance at this daunting time.
I had my appt on Friday which I was told about my high level. I have the follow up appt tomorrow where I think they will be suggesting different medication. I really dont think I am type 1. My father was type 1, and my gran is type.2
❤️
 
You already have an auto-immune condition, you have a parent with Type 1 and the meds aren’t working as they should. If I were you, I’d be pushing for the tests to rule out Type 1. It comes on more slowly in adults and is often missed.
 
Hashimoto's disease is an autoimmune condition and the thing about autoimmune conditions is that they like to turn up and party together in the same body. For that reason, together with your very high HbA1c at diagnosis and increased HbA1c despite medication and dietary changes suggests that you likely have Type 1 diabetes which is autoimmune and not Type 2 which is metabolic. Basically, if you are Type 1, your immune system is killing off the cells in your pancreas which produce insulin so you will need injected insulin. Are you noticing any unintentional or dramatic weight loss as that is usually another sign of Type 1?
You need to ask your GP to refer you to a specialist diabetes clinic because you suspect you are a late onset Type 1. Don't let the GP suggest that you can't be Type 1 because it only develops in children or that you are too old for it, because that is not the case at all despite many GPs incorrectly believing it. Many of us here were diagnosed Type 1 in later life and indeed Tour ex Prime Minister, Teresa May was in her 50s when diagnosed with it. If your Dr is reluctant to refer you, put them on the spot and ask them to explain why they think you are Type 2, especially as you are not responding to Type 2 meds and dietary changes. Ask for a means of testing your BG levels (a BG meter) and ketones (usually Ketostix to dip in urine) at home as these things will tell you if you need to seek urgent medical attention at A&E if things suddenly take a turn for the worse as can happen with uncontrolled Type 1 diabetes. It is a serious matter and can potentially land you in a coma if you develop ketones in your blood and don't get emergency treatment pronto.
I was diagnosed at 55yrs old and my HbA1c was 114 at diagnosis and went up to 116 five weeks later and I was started on insulin at that point and referred to a consultant at the clinic, where they did tests to check for Type 1 (GAD antibody and C-peptide tests) which confirmed I was Type 1.

If your GP will not prescribe a BG meter and test strips and/or Ketostix you can self fund them and I think it would be wise insurance for you to invest in to keep yourself safe. You can buy a relatively cheap BG meter kit for about £20 (the Spirit Tee2 or the Gluco Navii are both well tried and tested by members of the forum and found to be reliable and cost effective). You would need to purchase extra test strips at about £10 a pot of 50 for the BG meter as it just comes with 10 strips. Ketostix are about £5 for a pot of 50 to test your urine for ketones. If you are prescribed certain medication like Gliclazide or insulin, then your GP would need to prescribe these but if they don't put you on those meds then they are not obliged to provide them, so it would be more a good will gesture. Some are more switched on to the benefit of home testing than others who often discourage it, but if you are on those 2 medications then you have to be able to test to keep yourself safe, because they can cause hypos (dangerously low BG).

If anything I have written doesn't make sense or you don't understand please ask. Unfortunately many GPs have little understanding of Type 1 and misdiagnose people as a result. There are plenty of members of the forum here who were misdiagnosed as Type 2 when they were actually Type 1 and it took months or even years or decades to get the correct diagnosis and support.
 
Hashimoto's disease is an autoimmune condition and the thing about autoimmune conditions is that they like to turn up and party together in the same body. For that reason, together with your very high HbA1c at diagnosis and increased HbA1c despite medication and dietary changes suggests that you likely have Type 1 diabetes which is autoimmune and not Type 2 which is metabolic. Basically, if you are Type 1, your immune system is killing off the cells in your pancreas which produce insulin so you will need injected insulin. Are you noticing any unintentional or dramatic weight loss as that is usually another sign of Type 1?
You need to ask your GP to refer you to a specialist diabetes clinic because you suspect you are a late onset Type 1. Don't let the GP suggest that you can't be Type 1 because it only develops in children or that you are too old for it, because that is not the case at all despite many GPs incorrectly believing it. Many of us here were diagnosed Type 1 in later life and indeed Tour ex Prime Minister, Teresa May was in her 50s when diagnosed with it. If your Dr is reluctant to refer you, put them on the spot and ask them to explain why they think you are Type 2, especially as you are not responding to Type 2 meds and dietary changes. Ask for a means of testing your BG levels (a BG meter) and ketones (usually Ketostix to dip in urine) at home as these things will tell you if you need to seek urgent medical attention at A&E if things suddenly take a turn for the worse as can happen with uncontrolled Type 1 diabetes. It is a serious matter and can potentially land you in a coma if you develop ketones in your blood and don't get emergency treatment pronto.
I was diagnosed at 55yrs old and my HbA1c was 114 at diagnosis and went up to 116 five weeks later and I was started on insulin at that point and referred to a consultant at the clinic, where they did tests to check for Type 1 (GAD antibody and C-peptide tests) which confirmed I was Type 1.

If your GP will not prescribe a BG meter and test strips and/or Ketostix you can self fund them and I think it would be wise insurance for you to invest in to keep yourself safe. You can buy a relatively cheap BG meter kit for about £20 (the Spirit Tee2 or the Gluco Navii are both well tried and tested by members of the forum and found to be reliable and cost effective). You would need to purchase extra test strips at about £10 a pot of 50 for the BG meter as it just comes with 10 strips. Ketostix are about £5 for a pot of 50 to test your urine for ketones. If you are prescribed certain medication like Gliclazide or insulin, then your GP would need to prescribe these but if they don't put you on those meds then they are not obliged to provide them, so it would be more a good will gesture. Some are more switched on to the benefit of home testing than others who often discourage it, but if you are on those 2 medications then you have to be able to test to keep yourself safe, because they can cause hypos (dangerously low BG).

If anything I have written doesn't make sense or you don't understand please ask. Unfortunately many GPs have little understanding of Type 1 and misdiagnose people as a result. There are plenty of members of the forum here who were misdiagnosed as Type 2 when they were actually Type 1 and it took months or even years or decades to get the correct diagnosis and support.
That is fantastic information thank you. I will ask at my appt tomorrow for blood test to check for type 1 and LADA.
Still dont fully understand the Ketones but I will look into this.
 
You’ll need the test for the Type 1 antibodies and also a C Peptide test. Those together will help determine your type. Ketones are potentially dangerous and can lead to ketoacidosis - basically a very serious condition where you blood becomes acidic. Ketones can be detected in the blood or urine, so if you can test for them you’ll know you’re not on the way to ketoacidosis (DKA).
 
Good luck.
Basically, ketones can develop in the absence of enough insulin. Usually the guidance is to test for ketones if your BG (Blood Glucose) levels are persistently mid teens or above as yours may be with and HbA1c of 125. At that level, the blood can start to become a bit acidic and in the presence of ketones this causes Diabetic KetoAcidosis and your blood becomes toxic. It can lead to organ damage or failure. You may have heard people mention a fruity breath like pear drop sweets when it comes to diabetics and this is due to a build up of ketones. Other symptoms would be abdominal pain and nausea and possibly respiratory problems, but really it is best if you can pick it up by testing and get treatment before it gets to that stage.
 
I am glad you are being seen tommorow.
You need to test for ketones as high blood sugars, and high ketones can result in diabetic ketoacidosis....dka, which is serious.

I'd suggest they should test your ketones at you appointment.

I'm astonished that your doctor has missed so many T1 red flags, to be honest.
 
That is fantastic information thank you. I will ask at my appt tomorrow for blood test to check for type 1 and LADA.
Still dont fully understand the Ketones but I will look into this.
Have a look at this from the main DUK site about DKA and the importance of checking for ketones
 
How did the doctors appointment go?
 
Thank you all for you very helpful advice and guidance.
My appt today was ok. Still waiting to hear back from the diabetic specialists but we were in agreement that I do possibly have type 1 or LADA. The more I have read, the more I feel that I do actually have LADA.
I fit many symptoms (except loosing weight)

The plan is that hopefully I will hear from the diabetic specialists this week, and then get a blood test to check/rule out LADA or type 1.
And in the mean time my prescription will most likely change from Merformin to Alogliptin, again needs approval from the specialist ❤️
 
Thanks for the update @shelstars

Glad things are getting checked out. Hopefully any tests will be processed speedily and you won’t be left in limbo with your glucose running rampant!

Let us know how things go 🙂
 
Hello everyone.
Had a bit of a rollercoaster week.

I received a call from the diabetes clinic from my local hospital yesterday, they had received my referal from my gp practice.
I was being treated as an emergency.
I had to leave work and go to my gp practice with a urine sample, the practice were expecting me.

I now have a 4 Sure Smart Duo machine. Ive to test 4x daily over the weekend, and the hospital will call me Monday for the results.
From the results will decide what happens next.
My reading this morming was 15.3 for glucose and 0.1 for ketones.
I know its a great sign for the ketones being very low.

What a great machine though!! Unsure of the long term use for me with it from.the NHS, but If this is not mine, i would consider buying one.
I
 
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