Hello

[Sammiesnail]

Hi I’m Sammie; had type 2 diabetes since 2012; I did reverse it in the early days, I’ve lost six stone in weight, but it’s now worse than ever. My blood sugars range from 8-20, but I’ve never been poorly or struggled with symptoms. Until now. I have an awful relationship with my Diabetes Nurse, and at Christmas she put me on insulin, I’ve never felt so ill, but she’s just not supporting me. I saw her three times in six weeks and now she won’t see me until end of March. She also put me on Ozempic, and hasn’t followed it up once. I feel so poorly but I don’t know where to get support. Any help would be greatly appreciated xxx

 

[Leadinglights]

Welcome to the forum, I sure a few people will be along to offer some advice but a bit more information would help. So a few questions if you don't mind.
Your weight loss is that recent and was that intentional and achieved easily.
What is your HbA1C, fairly high I assume if you are getting the blood glucose level as high as 20. When are your getting those levels. Has there been any improvement since taking the insulin?
What insulins and doses are you taking?

A bit of information about your diagnosis would help and is there anything in your lifestyle that has changed.
What is your diet like and have you been given any dietary advice given you were started on insulin.

Sorry for the 20 questions but it does help people make suggestions.

You could phone the Diabetes UK helpline for advice tomorrow if nobody responds soon.

 

[Sammiesnail]

Hi
Thanks for the questions.
The weight loss has been since 2018, an ongoing project. Was by exercise and changing my eating habits, so long term and intentional.
HbA1C in December she told me was 12, does that sound right? I was ill just before Christmas with a kidney infection when my bloods were at their highest, but it is very food lead when they fluctuate so differently, everyone loves the occasional curry.
I’m now following a low carb diet which was advised by the Diabetes Nurse. The Low Carb program.
I take Humulin twice daily 12 units in the morning and 8 units at night my blood sugar levels range now between 6.8 mmol and the highest after meals is 13.5 mmol, so improving slightly.
I was diagnosed with gestational diabetes 23 years ago and have had my sugars checked regularly since then, they have increased over the years and was officially diagnosed and put of metformim on 2012; as previously mentioned I did reverse it back to normal levels and they stayed “normal” for about eight years; then started creeping up, hence the weight loss programme, but the diabetes nurse just said, you’ve had gestational, you were bound to get full blown later in life!! Is this right? I just don’t get any answers.
I’m more active and more conscious now of what goes in my mouth than ever, so yes that’s how my lifestyle has changed. Hope this helps x

 

[Leadinglights]

Hi
Thanks for the questions.
The weight loss has been since 2018, an ongoing project. Was by exercise and changing my eating habits, so long term and intentional.
HbA1C in December she told me was 12, does that sound right? I was ill just before Christmas with a kidney infection when my bloods were at their highest, but it is very food lead when they fluctuate so differently, everyone loves the occasional curry.
I’m now following a low carb diet which was advised by the Diabetes Nurse. The Low Carb program.
I take Humulin twice daily 12 units in the morning and 8 units at night my blood sugar levels range now between 6.8 mmol and the highest after meals is 13.5 mmol, so improving slightly.
I was diagnosed with gestational diabetes 23 years ago and have had my sugars checked regularly since then, they have increased over the years and was officially diagnosed and put of metformim on 2012; as previously mentioned I did reverse it back to normal levels and they stayed “normal” for about eight years; then started creeping up, hence the weight loss programme, but the diabetes nurse just said, you’ve had gestational, you were bound to get full blown later in life!! Is this right? I just don’t get any answers.
I’m more active and more conscious now of what goes in my mouth than ever, so yes that’s how my lifestyle has changed. Hope this helps x

Thanks for the additional information, I think those who take insulin @Inka and @rebrascora might have some words of wisdom that may help you.
You may benefit from the free trial of the Libre that Abbott are offering as it may help you see what is going on. It sounds as if you need more support from your diabetic team.
You mention having had an infection and that can increase blood glucose. An HbA1C of 12 sounds like you have been given your result as a % which indeed is very high (6.5% or 48mmol/mol is the threshold for diagnosis) so perhaps explains the prescribing of insulin.

 

[rebrascora]

Hi and welcome.

Sorry to hear that you are feeling unsupported, especially after you have been started on insulin as it can be a tricky time. Sadly, it is becoming a quite common theme here on the forum as NHS resources are stretched.

Can you tell us the full name of the Humulin insulin.... it is often followed by a letter or letter and number, like I, S or M3.

When did you start on the Ozempic? Was that the same time as the Humulin or before and did you start to feel rough before that or after. Is the Ozempic to help you with stalled weight loss and did you start on a low dose and then increase it and if so what dose are you on now? It seems a bit odd to start you on Ozempic and insulin at the same time but I am no expert on Type 2 medication, so perhaps it is a recognized pathway. @gll I think has more knowledge and a link to a flow chart for Type 2 medication which might be helpful.

Can you clarify what you mean by feeling poorly? Is it nausea, which I believe is a side effect of Ozempic or are you perhaps suffering false hypos where your BG levels are dropping suddenly due to the insulin.

I agree that a free trial of the Freestyle Libre would be a good option to give you more info. Following a low carb diet can be tricky whilst using insulin so being able to track your BG levels more closely with a sensor might give you more insight into what is going on. As a Type 2 diabetic you qualify for the free Libre trial providing you have a compatible phone, so definitely look into that option.

 

[gll]

https://www.sign.ac.uk/assets/diabetes_algorithm.pdf
this is the link, look on 3rd line treatments for ozempic and insulin stuff x

I'm so sorry you are at the point of you have the drugs you need (insulin) but left fumbling. I was the opposite where I had a huge battle with my doctors to get them to listen/refer me and my DSN was a dream to deal with compared to them and has guided me enough to get to a self manageable point.

Are you under a DSN (hospital based/linked) or the GPs nurse who does diabetes?
Detangling what's causing the issue will be the key here in how to move forwards, the ozempic or the lower blood sugars.

tagging @Lucyr for ozempic input and things you can try to avoid feeling off from that x

 

[Sammiesnail]

Hi and welcome.

Sorry to hear that you are feeling unsupported, especially after you have been started on insulin as it can be a tricky time. Sadly, it is becoming a quite common theme here on the forum as NHS resources are stretched.

Can you tell us the full name of the Humulin insulin.... it is often followed by a letter or letter and number, like I, S or M3.

When did you start on the Ozempic? Was that the same time as the Humulin or before and did you start to feel rough before that or after. Is the Ozempic to help you with stalled weight loss and did you start on a low dose and then increase it and if so what dose are you on now? It seems a bit odd to start you on Ozempic and insulin at the same time but I am no expert on Type 2 medication, so perhaps it is a recognized pathway. @gll I think has more knowledge and a link to a flow chart for Type 2 medication which might be helpful.

Can you clarify what you mean by feeling poorly? Is it nausea, which I believe is a side effect of Ozempic or are you perhaps suffering false hypos where your BG levels are dropping suddenly due to the insulin.

I agree that a free trial of the Freestyle Libre would be a good option to give you more info. Following a low carb diet can be tricky whilst using insulin so being able to track your BG levels more closely with a sensor might give you more insight into what is going on. As a Type 2 diabetic you qualify for the free Libre trial providing you have a compatible phone, so definitely look into that option.

Hi
Thank you for your message.
It is Humulin I by the looks of it.
I was three weeks in to taking the insulin when ozempic was introduced. This was introduced to counteract the WEIGHT GAIN, since I started the insulin I’ve put on nearly a stone, which the diabetic nurse said was normal, she said it would help to slow down the gain. I’m still on metformin too, I take 2 tablets twice a day.
The sickness has really only started since the ozempic was introduced. This week I’ve had both sickness and diarrhoea which I know are side effects, it it’s really knocked me for six, I haven’t eaten since Sunday! I’m only taking 0.25! But my hunger has not been suppressed otherwise which I am sure it’s supposed to be. I just don’t want to talk to my diabetes nurse, she just laughs at me as if I’m stupid when I have questions, and to get in to see a Doctor is a joke, so I’m a little at my wits end at the moment. I was fine until the insulin and ozempic were introduced, not issues at all, apart obviously from the high blood sugars.

 

[Sammiesnail]

https://www.sign.ac.uk/assets/diabetes_algorithm.pdf
this is the link, look on 3rd line treatments for ozempic and insulin stuff x

I'm so sorry you are at the point of you have the drugs you need (insulin) but left fumbling. I was the opposite where I had a huge battle with my doctors to get them to listen/refer me and my DSN was a dream to deal with compared to them and has guided me enough to get to a self manageable point.

Are you under a DSN (hospital based/linked) or the GPs nurse who does diabetes?
Detangling what's causing the issue will be the key here in how to move forwards, the ozempic or the lower blood sugars.

tagging @Lucyr for ozempic input and things you can try to avoid feeling off from that x

Hi
Thanks I will look at the link. I am under the GP’s Nurse, she works two days and it’s so difficult to speak with her, she always promises to call and never does. I think it is the ozempic to be honest, but even when starting the insulin I was nauseous and always had a headache, which I thought was low blood sugars, but they were never lower than 8. And when I did mention to the nurse she’d just laugh and say it was Normal to suffer these side effects.
Do you think it would be a good idea to be referred to the hospital?

 

[rebrascora]

No one should be laughing at your discomfort least of all a health care professional!
Insulin should not cause you to feel nauseous or have headaches and technically insulin should not cause weight gain. It is eating too much food which causes that. The insulin just allows your body to use it, so tackling your diet would probably be a better way to reverse the weight gain rather than a medication which makes you feel really rough, although I appreciate weight loss is much more difficult for some than others, but that would be the place to start in my opinion and from my own experience a change of diet can have a massive beneficial impact on lots of other health issues too, but it does need some effort at least in the early stages until you get into a new routine. Finding what works for you as an individual is important whether you find the convenience of the Newcastle meal replacement shakes diet of 800calories a day an option or a low carb real food approach, but you would need to be prepared to adjust or perhaps even stop your insulin to do that.
I think it is important to understand that whilst DRs and nurses can prescribe medication, it is up to us to decide whether we want to take it or not, or keep taking it if it is making us feel really unwell. It is however important to be rational about what you can achieve yourself with lifestyle changes without that medication to reduce your BG levels, because leaving them high is a fools game, even if they don't make you feel bad now, because the damage they are doing can be slow and insidious and it's too late once your eyesight is damaged or your peripheral arteries clog up or kidney failure.
There are plenty of people here who have reversed their diabetes and there are plenty of us who are insulin dependent. Remission is possible for some and not for others. My thoughts are that you won't know until you give it a go and if you have a BG meter to keep an eye on your levels and the insulin to fall back on if they go too high, then in my view you have a safety net to experiment yourself and find what works for you. You have already lost a huge amount of weight (massive kudos to you!), so you know you can do that and you will know whether there is room for further work there or if it slipped and that is why your levels rose when you had been doing so well for so long or if perhaps illness has impacted your BG levels.... Covid has certainly caused problems for some people.
Many of us here feel that taking control of our own diabetes management and doing a bit of cautious experimenting to see what works and what doesn't, has been empowering and enables us to manage our diabetes better.

Gaining a better understanding of the condition is a good place to start but also learning how your particular body responds to food and insulin and in that respect a trial of the Libre system might give you a bit of insight into what is going o and perhaps help to guide you with dietary changes which will work for your individual body.

 

[Lucyr]

The nausea does sound like an ozempic side effect. If you feel like you’d rather get used to the insulin first, then see if your weight settles, and start ozempic in the future if needed then you could talk to your DSN/Dr about that.

I came off ozempic because although I got up to a 1.0 dose it just didn’t feel like the right timing, I had other health issues going on and it didn’t feel like it was helping my appetite and I couldn’t figure out which side effect / illness symptom was from what. I might start it again in the future, or may not.

If you want to stay on the ozempic, it could be that the side effects settle in time. Keep a food and symptom diary and see if you can spot any patterns. For me fat made me feel sick so I ate low fat and stuck to fairly plain foods. For others it could be other things that cause the nausea. Eating small portions helps, ginger drinks or peppermint tea are rumoured to help but depends on the individual also.