Uncontrolled and waiting for an appointment - UPDATE pg3

[Lamont D]

No drink, (only water to take medication) two tests, 0.3 difference, washed hands. This spike happens every day for me right now - as soon as I take steroid medication, within two hours I’m getting double digit readings.

By the evening, the readings are coming down so this evens out the day and overall I end somewhere near 9-11 which is still too high.

Already discussed with GP, and already been referred for specialist input - awaiting a date for this. GP felt unable to prescribe anything as apparently I’m a complex case (autoimmune disorder, multiple meds, stage 3B kidney disease, heart issues etc)

I did eat, 15.4 pre, and 2 hours post 15.6 so at least my meal was good.

Whenever I have been given any new tablets, meds, anti biotic and so on, I have to find out how they will effect me, I have intolerance to certain sugars, especially lactose, sucrose, and so on. So I must have meds that don't contain those ingredients. Or very limited to low percentage of whole.
Most meds contain such ingredients but there are alternatives, or I would be surprised that there isn't.
Pain meds are a pain! Sorry but they are! Only paracetamol in tablet form can I take.
Press your doctor or your specialist to find an alternative. Having mid teens high BG levels is not treatment.

Best wishes

 

[IBEX82]

Whenever I have been given any new tablets, meds, anti biotic and so on, I have to find out how they will effect me, I have intolerance to certain sugars, especially lactose, sucrose, and so on. So I must have meds that don't contain those ingredients. Or very limited to low percentage of whole.
Most meds contain such ingredients but there are alternatives, or I would be surprised that there isn't.
Pain meds are a pain! Sorry but they are! Only paracetamol in tablet form can I take.
Press your doctor or your specialist to find an alternative. Having mid teens high BG levels is not treatment.

Best wishes

Unfortunately, there is no alternative for the steroid - it is used to suppress my immune system. I have tried other immunosuppressants but they either haven’t worked or have caused worse health issues.

The effect of the steroid isn’t unique to me or a mystery. It’s established high blood sugar is a risk. Previously at low dose and withdrawal, it could be more controlled. But not at a higher dose.

The only thing that will bring the BG down now is stopping the steroids, (not possible without life threatening damage to blood vessels by the immune system) or introduction of medication to reduce the BG such as insulin, although it was mentioned something such as ozempic might work - this is all to be decided when I see the specialist for diabetes. I don’t have a date yet.

This is partly why I feel so overwhelmed and stressed as I’m doing my part (low carb) and it’s not working because of medication I don’t really have a choice in taking

 

[Lamont D]

Unfortunately, there is no alternative for the steroid - it is used to suppress my immune system. I have tried other immunosuppressants but they either haven’t worked or have caused worse health issues.

The effect of the steroid isn’t unique to me or a mystery. It’s established high blood sugar is a risk. Previously at low dose and withdrawal, it could be more controlled. But not at a higher dose.

The only thing that will bring the BG down now is stopping the steroids, (not possible without life threatening damage to blood vessels by the immune system) or introduction of medication to reduce the BG such as insulin, although it was mentioned something such as ozempic might work - this is all to be decided when I see the specialist for diabetes. I don’t have a date yet.

This is partly why I feel so overwhelmed and stressed as I’m doing my part (low carb) and it’s not working because of medication I don’t really have a choice in taking

Don't doubt that the low carb is not working, it is, you are using it, not to get mid twenties BG levels, if you didn't after the meds have raised it initially. So you are controlling your BG levels.
Keep battling. Have this discussion with your specialist.
keep safe

 

[IBEX82]

Don't doubt that the low carb is not working, it is, you are using it, not to get mid twenties BG levels, if you didn't after the meds have raised it initially. So you are controlling your BG levels.
Keep battling. Have this discussion with your specialist.
keep safe

Yes, you’re probably right. I’m sure they would be much higher if not low carbing.

I’m not sure how long I’ll wait for the specialist appt but hopefully it’ll be soon.

 

[Lamont D]

Yes, you’re probably right. I’m sure they would be much higher if not low carbing.

I’m not sure how long I’ll wait for the specialist appt but hopefully it’ll be soon.

Don't forget, there are those on here, that will try and help regardless, whether physical or mental.
Keep positive

 

[IBEX82]

Don't forget, there are those on here, that will try and help regardless, whether physical or mental.
Keep positive

You’ve been an immense help already - for sure making me put things in perspective.

I’m trying to get a GP appt to discuss the mental health too and I’ve now got a number from work for some counselling.

Just having a space to talk about things is good, I really appreciate all the advice and support.

Thank you

 

[IBEX82]

So it seems everything happens at once.. I got a call from the specialist diabetes service and the consultant has a telephone appt for me tomorrow and I have a GP appt tomorrow to discuss my mental health.

I’m hoping they don’t call at the same time. I do wish these were in person appointment but I’ll take what I can get.

 

[Lamont D]

So it seems everything happens at once.. I got a call from the specialist diabetes service and the consultant has a telephone appt for me tomorrow and I have a GP appt tomorrow to discuss my mental health.

I’m hoping they don’t call at the same time. I do wish these were in person appointment but I’ll take what I can get.

Be ready for the questions, and have your information and symptoms wrote down. Your anxiety might close your thinking down. He willing to ask for further tests, and be honest with your mental health issues, GP's are used to having anxiety issues discussed over the phone. Be assertive and don't let your doctor for you off. You need help and he can and should help!

 

[IBEX82]

Be ready for the questions, and have your information and symptoms wrote down. Your anxiety might close your thinking down. He willing to ask for further tests, and be honest with your mental health issues, GP's are used to having anxiety issues discussed over the phone. Be assertive and don't let your doctor for you off. You need help and he can and should help!

I have some prompts written down for the GP as I think I’ll struggle a bit to explain how I feel as you say with feeling anxious.

The specialist I’ve just noted down my recent sugars and times. I’ve jotted down the obvious spike from fasting (5-6) and 2-3 hours post steroid 10-16 with the bed time reading being back around 6-7. I’m not sure what else to mention to the diabetes specialist.

I appreciate the help though - I need to be strong and not just fall apart tomorrow.

 

[Lamont D]

Hi all,

I haven’t posted here in the longest time. I was doing so well with my diabetes - type 2 (steroid induced) I did so well I got my HbA1c down in the 40s and was then taken off all diabetes medication. It helped as my steroids were also lowered too.

Since then I caught covid, had a Vasculitis flare and ended up back on high dose steroids. My blood sugars has been creeping up but to be honest I wasn’t aware as I’d stopped monitoring at home as I was still following a low carb diet. I still am following a low carb diet but I hadn’t had my HbA1c done for a long time with the pandemic.

I had it done two weeks ago and I was floored. It was 82. I had a long discussion with the GP and he felt it was the steroids, Vasculitis and Covid combined. He went over my eating habits and felt this was overall good. He also mentioned it could be progression of the diabetes.

He didn’t feel able to prescribe me medication as he feels I need insulin or something such as Ozempic but because I have multiple conditions (including stage 3B kidney disease due to Vasculitis damage) he felt I needed specialist input. So he has referred me.

I have lot of pressure at work recently too so combined with this news, I had a bit of an emotional break down at work yesterday. I’ve been in tears and had to stay off work. I feel so upset and stressed that it has come to this.

I don’t know why I’m posting really but I need to let it all out. With the GP advice, I have started testing my sugars again so I have something to show the specialist and my numbers are shocking.

I just don’t know to how cope with everything right now. I have multiple conditions and starting on insulin seems so terrifying.

If you read your opening post, that will do for a start.
The complicated conditions combined with symptoms should be enough to get your specialist interested.

 

[Bash_]

Excellent advice

 

[IBEX82]

If you read your opening post, that will do for a start.
The complicated conditions combined with symptoms should be enough to get your specialist interested.

That’s great, thank you. He’s calling between 10am and 12 today so will update once I know more.

 

[IBEX82]

Just had my appointment with the diabetes specialist. He’s prescribed me once a day insulin to take the with my steroid and he’s also prescribed gliclazide twice daily. He wants to try to get the sugars under control quickly as he feels the double digits for the majority of the day are very damaging.

He’s prescribed everything but was unable to prescribe a CGM - will prescribe test strips and lancets. He will review me in two weeks. He also gave advice on hypos but he feels I shouldn’t have too many as the insulin he has prescribed will only last 12 hours and should be out my system by early evening.

The GP appointment was supposed to be at 9am but I hadn’t had a call and rang the reception to ask why. Apparently it wasn’t booked properly and I wasn’t on the list. No appts for today now so I have to call back on Tuesday and should be able to have a same day appt.

So many emotions right now.. overwhelmed and a bit scared but I’m sure it is all for the best.

 

[Lamont D]

Just had my appointment with the diabetes specialist. He’s prescribed me once a day insulin to take the with my steroid and he’s also prescribed gliclazide twice daily. He wants to try to get the sugars under control quickly as he feels the double digits for the majority of the day are very damaging.

He’s prescribed everything but was unable to prescribe a CGM - will prescribe test strips and lancets. He will review me in two weeks. He also gave advice on hypos but he feels I shouldn’t have too many as the insulin he has prescribed will only last 12 hours and should be out my system by early evening.

The GP appointment was supposed to be at 9am but I hadn’t had a call and rang the reception to ask why. Apparently it wasn’t booked properly and I wasn’t on the list. No appts for today now so I have to call back on Tuesday and should be able to have a same day appt.

So many emotions right now.. overwhelmed and a bit scared but I’m sure it is all for the best.

It is great that you can monitor your BG levels, How you go about texting is now important. With T2, the testing it should be around meals, did your specialist mention dietary recommendations?
Next you need to keep a food diary and record your BG levels, record what you eat, your daily routine and anything else you consider important including when you take your meds and insulin.
Any tests in the offering or blood panel?
Your specialist wants to see you in a fortnight, that means he is concerned about the complicated issues, you could be something he hasn't seen something like your dilemma. And he may need more time to consult other specialists.
I know it's hard but relax through the next couple of weeks. And try not to be too anxious.

First and second step done, keep learning, keep safe

 

[IBEX82]

It is great that you can monitor your BG levels, How you go about texting is now important. With T2, the testing it should be around meals, did your specialist mention dietary recommendations?
Next you need to keep a food diary and record your BG levels, record what you eat, your daily routine and anything else you consider important including when you take your meds and insulin.
Any tests in the offering or blood panel?
Your specialist wants to see you in a fortnight, that means he is concerned about the complicated issues, you could be something he hasn't seen something like your dilemma. And he may need more time to consult other specialists.
I know it's hard but relax through the next couple of weeks. And try not to be too anxious.

First and second step done, keep learning, keep safe

For testing, he recommended my current schedule was fine so that’s am, two hours after meds, before meals and two hours after meals, then before bed. He did obviously recommend testing if I notice any new symptoms or any signs of a hypo.

Went over my average weekly diet. He noted it was quite low on carbs which he said is usually fine but that would need to be careful in the first few weeks as the insulin dose might be too high for my carb level but we won’t know until we try - he did say if it was case, he would lower my insulin a little and not tell me to eat more carbs which I thought was a revelation as in the past when I had just gliclazide I had a practice nurse telling me to eat more carbs to keep my blood sugar up - not take less medication.

He didn’t request any bloods as full blood panel was done only a couple of weeks ago. He did say he thought the steroid was the main culprit and that he could see when the steroids were much lower, I had better control with diet.

He said with what he’s prescribed and my diet, he would hope to see a big reduction in my HbA1c within 6-8 weeks but full picture would be three months.

He said he’d prefer to see me in 2 weeks as my day time numbers were high and as I’d never had insulin before, he wasn’t sure if I’d need a few adjustments to get the dosage right for the steroids and the lower carb diet.

The GP appointment for my mental health wasn’t as successful since it wasn’t booked properly and I need to call them again on Tuesday to book another one.

 

[Lamont D]

That is a very good appointment by the sound of it. Well done!
You are taking control. Brilliant!

 

[IBEX82]

That is a very good appointment by the sound of it. Well done!
You are taking control. Brilliant!

Thank you, it’s a definite start and here’s to hopefully getting my physical health to a better level

 

[Mrs Price]

My husband used to eat and inject in his car I made him a rather big lunch box with sandwiches crisps and a chocolate bar of some kind for when his sugar levels were stupidly low, like when he worked almost a double shift before coming home, I phoned the bakery to ask if he remembered where he lived & knew what time it was! As he had had a transplant due to his diabetes and a few times he had passed out on the car park nobody noticed

 

[IBEX82]

My husband used to eat and inject in his car I made him a rather big lunch box with sandwiches crisps and a chocolate bar of some kind for when his sugar levels were stupidly low, like when he worked almost a double shift before coming home, I phoned the bakery to ask if he remembered where he lived & knew what time it was! As he had had a transplant due to his diabetes and a few times he had passed out on the car park nobody noticed

I’m sorry to hear about your husband. I will be careful with the insulin

 

[Lamont D]

My husband used to eat and inject in his car I made him a rather big lunch box with sandwiches crisps and a chocolate bar of some kind for when his sugar levels were stupidly low, like when he worked almost a double shift before coming home, I phoned the bakery to ask if he remembered where he lived & knew what time it was! As he had had a transplant due to his diabetes and a few times he had passed out on the car park nobody noticed

I hope your husband is Type 1?

@IBEX82 is Type two and shouldn't go anywhere that butty box. Ha!