Recently diagnosed with super high glucose levels

[Joanneshawx]

Hello everyone, I was diagnosed 6 weeks ago sort of by accident. I have thyroid cancer and had my thyroid removed at the end of March. Ever since it was removed I have had an unquenchable thirst and blurred vision which I had put down to being without a thyroid. When I had bloods tested for my thyroid the nurse noticed my very high glucose levels. On diagnosis my levels were 14.7 or 135 mmols. I was given metformin but after taking these for 6 weeks the levels have increased to 15.7 or 148. I now have glyclazide instead to take.

Does anyone have experience of such high levels and if so what was taken to bring them down?

 

[Joanneshawx]

Nobody has really told me anything. My GP was unhelpful, has been for the cancer too so I have just changed to a new one. I see their diabetes nurse next week. I have been on the DESMOND diabetes course, but was told that my case is "exceptional" in that they think the diabetes has been caused by a shock to my body, ie the cancer. I am not overweight, in fact I have been loosing weight steadily since my thyroid was removed, 2 stone so far.

 

[Daibell]

Hi. Although high it's not that bad. I've been into the 20s many times before insulin. Obviously the Thyroid op could be a factor. Are you on steroids? What is your age and BMI?

 

[Joanneshawx]

Hi, no steroids, just take Levothyroxine for the thyroid problem. My BMI is 22 and I am 52. It seems very high to me. On the DESMOND course I did, they said ideally it should be around 48 and mine is 148

 

[Daibell]

Hi, no steroids, just take Levothyroxine for the thyroid problem. My BMI is 22 and I am 52. It seems very high to me. On the DESMOND course I did, they said ideally it should be around 48 and mine is 148

You shouldn't exclude the possibility of being Late onset T1 rather than T2. If with a low-carb diet and reasonable dose of Gliclazide the blood sugar doesn't come down then do discuss the possibility of being Late onset T1.

 

[Bluetit1802]

For a type 2, whilst medication helps, the key to control is diet. The role of carbohydrate in controlling diabetes is something you need to learn about. All carbs turn to glucose once inside the system, so it makes sense not to eat too many. The more carbs you eat, the higher your levels may become. Bread (any colour), rice (any colour), pasta, cereals, potatoes and flour are the main culprits, and we also have to be careful with milk and fruit.

You can use your meter ( I assume you have one) to test before you eat and again 2 hours later. If the rise is more than 2mmol/l (ideally less than 1.5mmol/l) there are too many carbs in that meal that your body cannot cope with. You need then to seriously reduce the portions or avoid them completely.

Have a good browse round these forums and ask as many questions as you like.

 

[Joanneshawx]

Hi Bluetit1802 I've been following a fairly healthy diet for some time. During 2014 I lost 4 stone dieting and exercising. I was "rewarded" this year with cancer and diabetes.
Before I had my thyroid removed I had absolutely no symptoms of diabetes and was very fit and healthy.
I don't have a meter, my previous GP told me I didn't need one.

 

[Daibell]

Hi Bluetit1802 I've been following a fairly healthy diet for some time. During 2014 I lost 4 stone dieting and exercising. I was "rewarded" this year with cancer and diabetes.
Before I had my thyroid removed I had absolutely no symptoms of diabetes and was very fit and healthy.
I don't have a meter, my previous GP told me I didn't need one.

Hi. You definitely need one.

 

[eddie1968]

Could be your pancreas produces less insulin than it used to and/or your insulin resistance has got worse. I lost a lot of weight through diet and exercise and showed only slightly better blood results (fasting, 2 hour post meal & HbA1c). Now my insulin has been titrated upwards my blood results improved drastically.

 

[donnellysdogs]

I don't understand why they haven't suggested insulin with levels so high..
Was this a hba1c test result. If so with the symptoms you are describing and your bmi being 22 I would be asking for insulin.

 

[ButtterflyLady]

Hi, no steroids, just take Levothyroxine for the thyroid problem. My BMI is 22 and I am 52. It seems very high to me. On the DESMOND course I did, they said ideally it should be around 48 and mine is 148

If the numbers you quoted are blood glucose levels, then they are not exceptionally high for someone newly diagnosed, and they should come down to the normal range with a change to what you are eating, unless you have T1, then you will need insulin.

However if the numbers you quoted are HbA1c then yes they are very high. Changing your eating is still the most important thing you can do, but you probably also need insulin - if T2 you may be able to wean off the insulin in a few months but if what you have is something like T1 then it will probably be ongoing. Here is some info about insulin for T2s, including a reference to some research supporting the idea of short term insulin therapy from the time of diagnosis in some cases.
http://www.phlaunt.com/diabetes/15478720.php

The thyroid and pancreas are part of the same body system so it wouldn't surprise me if removing the thyroid affected the pancreas, but I don't know much about it. You should probably be referred to an endocrinologist unless it is very clear that you are T2.

 

[Joanneshawx]

You shouldn't exclude the possibility of being Late onset T1 rather than T2. If with a low-carb diet and reasonable dose of Gliclazide the blood sugar doesn't come down then do discuss the possibility of being Late onset T1.

Hi, just thought I'd let you know you were right about me having Type 1. Am now on insulin.

 

[Joanneshawx]

I don't understand why they haven't suggested insulin with levels so high..
Was this a hba1c test result. If so with the symptoms you are describing and your bmi being 22 I would be asking for insulin.

Hi, sorry I didn't respond to this sooner. My new GP has said I have Type 1 not Type 2 and I am now on insulin.

 

[Joanneshawx]

Thank you all for your comments and support. After changing GP to a more supportive one I have been told I have Type 1. I was given a monitor and had my gliclazide dose trebled. My levels ranged from 16 in the mornings to over 33 in the evenings (too high for the monitor to read) I was then referred to the local diabetes clinic who stopped the pills and gave me insulin to take once at night, after 4 days my my levels were slightly lower but not much so yesterday I was given insulin to take with every meal.

It's all happened so quick, which is good, but it's a lot to take in. It was suggested at first that a short course of insulin might be what was needed, but it is looking like this is for life.

 

[ButtterflyLady]

Thank you all for your comments and support. After changing GP to a more supportive one I have been told I have Type 1. I was given a monitor and had my gliclazide dose trebled. My levels ranged from 16 in the mornings to over 33 in the evenings (too high for the monitor to read) I was then referred to the local diabetes clinic who stopped the pills and gave me insulin to take once at night, after 4 days my my levels were slightly lower but not much so yesterday I was given insulin to take with every meal.

It's all happened so quick, which is good, but it's a lot to take in. It was suggested at first that a short course of insulin might be what was needed, but it is looking like this is for life.

I'm glad you have the right diagnosis now. The nightly or "basal" insulin works on your BG all the time and is the means by which you can get your fasting BG under control. The insulin you have with meals or "bolus" insulin works on the post-meal BG levels. Do they have you on a fixed dose of bolus? This seems to be the usual thing at the start, but if you can learn about carb counting that will help a lot. There is a DAFNE course they should send you on, but in the meantime you can do a similar course online, or your DSN can teach you. The T1s can advise. I have also seen the T1s recommend the book Think Like A Pancreas.

 

[Joanneshawx]

I'm glad you have the right diagnosis now. The nightly or "basal" insulin works on your BG all the time and is the means by which you can get your fasting BG under control. The insulin you have with meals or "bolus" insulin works on the post-meal BG levels. Do they have you on a fixed dose of bolus? This seems to be the usual thing at the start, but if you can learn about carb counting that will help a lot. There is a DAFNE course they should send you on, but in the meantime you can do a similar course online, or your DSN can teach you. The T1s can advise. I have also seen the T1s recommend the book Think Like A Pancreas.

Thanks for your reply. I have a fixed dose of the bolus for now. I go back to the clinic on Wednesday so will find out more about it all then. The DAFNE course is run here so I expect I will do that soon. The GP ordered some blood tests and he mentioned the possibility of Type 1.5. He's been really good, got me on insulin within a week of joining his practice. I'll have a look for the book you mentioned. Thanks again.

 

[ButtterflyLady]

Thanks for your reply. I have a fixed dose of the bolus for now. I go back to the clinic on Wednesday so will find out more about it all then. The DAFNE course is run here so I expect I will do that soon. The GP ordered some blood tests and he mentioned the possibility of Type 1.5. He's been really good, got me on insulin within a week of joining his practice. I'll have a look for the book you mentioned. Thanks again.

Yes your new GP sounds awesome. Glad things are improving for you.

 

[donnellysdogs]

Glad to know you are now on insulin. Certainly sounds like you now have a better support GP than previously.

It is very, very unlikely that you would ever come off insulin. If T1 or Type 1.5 then once started on insulin (unless you get a honeymoon period) then it is pretty much final.

Good to read that you are niw bolusing for food and that you are on MDI. This will give you long term flexibility with food and life in general.

Please, if you drive, make sure you tell insurance and dvla that you are on insulin. It shouldn't make much difference because of the tablets you were on before. However, it is compulsory that you tell them when medication changes...

Glad to hear that you have now started to get the correct treatment...