What's too high and when should you take action?

[NathanWinters]

My wife has struggled with diabetes medication since being diagnosed with Type 2 diabetes in May 2023. She was initially prescribed Metformin and due to difficulty she had swallowing tablets was given powder, and when that was not available liquid. The does was slowly increased as her blood sugars were still quite high and during this time she experienced nerve damage to her legs and feet, recently she had been diagnosed with some eye damage due to diabetes.

She had bad side effects from Metformin but struggled on with it in the hope it would improve. She bought tic tacs and taught herself to take tablets and then requested delayed release metformin in the hope this would reduce symptoms. It did but not to a manageable level and reached breaking point where it was affecting daily life and reduced ability to perform physical activity.

We returned to the doctor who changed her medication to Gliclazide, planned a blood test in 6 weeks to check her HBa1c. Since this change the side effects from metformin have now disappeared, and she has felt much better in herself, has started to go for regular walks with me and the dogs and started to indoor cycle again. We have been checking blood sugar levels as she is experiencing side effects of high levels, frequent urination, pain to her legs and feet at night, symptoms that had disappeared when her blood sugar levels were lower, between 7-9.

Her blood sugars have been between 12 - 14 at every check in the morning before breakfast. Due to damage already caused, and her being symptomatic we became concerned and contacted the GP in the hope they would increase the dose.

The reply we received was that those levels are not really that high and the symptoms are less do with with that and more to do with long term effects of having diabetes but if we want to discuss diabetes management we can make an appointment. These symptoms were present after starting metformin when blood sugar levels were high and reduced and stopped when blood sugar levels lowered.

This has been disheartening and upsetting, everything I have read tells me that those levels are too high and it felt quite dismissive. I can understand we have highs and lows but the levels are consistently high. I would appreciate any advice, are we overreacting? Are we right to be pushing to increase the dose?

Thanks for taking the time to read, I hope that all makes sense

 

[Rachox]

Hi @NathanWinters and welcome to the forum. I’m sorry your wife is suffering so much and not getting much in the way of support from her health care professionals. During all of this has your wife changed her diet at all? A lot of us with type 2 have improved our readings by reducing carbohydrates (not just sugars) in our diet. If your wife does this she needs to be careful as on gliclazide she could end up going hypo if she doesn’t reduce carbs carefully.

Edit for typo

 

[NathanWinters]

Hi @NathanWinters and welcome to the forum. I’m sorry your wife is suffering so much and not getting much in the way of support from her health care professionals. During all of this has your wife changed her diet at all? A lot of us with type 2 have improved our readings by reducing carbohydrates (not just sugars) in our diet. If your wife does this she needs to be careful as on gliclazide she could end up going hypo if she doesn’t reduce carbs carefully.

Edit for typo

Hi Rachox, thanks for your support. She has is not eating anything with sugar at the moment and was already not eating many carbs. She had lost 80 pounds prior to being diagnosed.

 

[EllieM]

Hi Rachox, thanks for your support. She has is not eating anything with sugar at the moment and was already not eating many carbs. She had lost 80 pounds prior to being diagnosed.

There are (luckily rare) circumstances in which blood sugars being high can be a medical emergency.

Diabetic ketoacidosis

Find out about diabetic ketoacidosis (DKA), including what the symptoms are, when to get medical help and how to prevent it.

www.nhs.uk

Has your wife been checked for forms of diabetes other than T2 (which although the most likely is not the only out there)? (eg Weight loss has some red flags for LADA/T1, though it is also possible for T2s).

 

[JTL]

I had nerve damage a few years ago while I was a fairly new diabetic.
It's been repaired since through diet.
Nerves regrow or reroute when given the opportunity.
The people I know with diabetes who tend to rely on industrial medications (prescription drugs) tens to never improve their long term di=abetes situation and just get their medication increased again... and yet again... what the limits are I have no idea.
I take no diabetes medication and am the only one with a good stabilised and slowly... very slowly improving situation at my surgery.
Lower but not particularly low carbs.
No sweeteners except where I can't really help it when I indulge in industrial foods.
When I do indulge in such things I read labels and if I see a chemistry set list it goes back on the shelf.
My grandchildren were eating snacks and I looked out of curiosity at the ingredients... lots of chemical names that I knew nothing of!
The nearest thing to food was potato starch but no potatoes.
This to me is a food like substance but not food.
I avoid all this kind of stuff.
To me I can't just deal with diabetes as a lone condition.
I have to deal with everything around it especially my gut microbiome and my health in general or it doesn't work.
I use mouth wash probably twice a month at the very most because your gut microbiome starts in your mouth with around a billion friendly bacteria that I don't want to kill!
I'm in my seventies and not very active due to tumours on my spinal cord... benign but they give me a lot of problems.
Because I seem to forever be going for blood tests I've got some dumbbells that I use to keep my veins visible and healthy ish.
That has the knock on affect of being heart healthy.
First thing in the morning I have a tablespoon of olive oil and another before bed.
This is in place of statins.
The biggest killer in the western world the last forty years has been heart disease.
After forty years of dispensing statins the biggest killer in the western world is... heart disease.
I have a fair amount of fresh ginger root every day and cloves too.
I have other spices daily and nuts and berries. and dates every single day not just now and then.
I'm not a zealot earlier this evening I hade cheese burger chips and peas for my tea.
But I still have all the other stuff every day.
I think approaching diabetes a pill at a time whilst ignoring almost everything else is not the way to go.
Not for me anyway and I accept we are all different.
I'm drinking neat whiskey just now and off to bed around 1 a.m.
I wish everyone as good a dose of good health as possible but I seriously cannot approach diabetes one pill at a time can I now have two at a time please?
Just doesn't make any sense to me.

 

[VashtiB]

Hello and welcome @NathanWinters

It really sounds like you and your wife have had a tough time. Virtual hugs to both of you.

I agree with @EllieM that you should try to explore exactly what type of diabetes your wife has. It's not unknown for medical professionals to make assumptions without exploring all the possibilities.

The fact that your wife took steps to allow her to take pills indicates to me that she is a strong and determined person. That will only help.

I do suggest that it may be worthwhile keeping a log of the exact carb intake and the following blood sugar levels- that information may help with considering what type of diabetes she has.

Virtual hugs and a warm welcome - Good luck.

 

[NathanWinters]

Hello and welcome @NathanWinters

It really sounds like you and your wife have had a tough time. Virtual hugs to both of you.

I agree with @EllieM that you should try to explore exactly what type of diabetes your wife has. It's not unknown for medical professionals to make assumptions without exploring all the possibilities.

The fact that your wife took steps to allow her to take pills indicates to me that she is a strong and determined person. That will only help.

I do suggest that it may be worthwhile keeping a log of the exact carb intake and the following blood sugar levels- that information may help with considering what type of diabetes she has.

Virtual hugs and a warm welcome - Good luck.

Thank you for the advice and support. She has altered her diet although she already did not take many carbs. She isnt a brand new diabetic and we had it mostly under control but she suffered the metformin side effects.

With the medication change the BM is now high again and a cant even get the doctor to agree that 12-14, pre breakfast, is too high. It was approx 18, 4 hours after eating the last meal yesterday.

They only seem to care about the hba1c.

Right now, changing the diet doesn’t seem to be effecting it and we don’t want more damage from high blood sugars to occur over the next month while we wait for the blood test.

How can we determine the type of diabetes from the carb intake?

 

[NathanWinters]

There are (luckily rare) circumstances in which blood sugars being high can be a medical emergency.

Has your wife been checked for forms of diabetes other than T2 (which although the most likely is not the only out there)? (eg Weight loss has some red flags for LADA/T1, though it is also possible for T2s).

No she hasnt been checked, is that an easy thing to do?

 

[EllieM]

No she hasnt been checked, is that an easy thing to do?

You'd need cpeptide (detects how much insulin is being produced) and GAD antibody tests to tell whether LADA (slow developing T1, where the pancreas gradually destroys its insulin producing cells) is in play. I'm not sure whether your GP can order these or whether you would need a referral to a hospital endocrinologist. There are additional even rarer types of diabetes, but they would need an endocrinologist.

Was the weight loss desired, and is she still losing weight? I would expect your GP to pay attention to unexpected weight loss.