Feeling So Sad and Lost.

[Bohemianne]

Feeling overwhelmed is exactly where I am right now, I'm at the point where I'd like to just give up with anything and everything to do with diabetes. I'm Type 2, diagnosed in 2004, good control and HBA1c results always good right up until about a year ago when my levels started rising, changes in oral medication did nothing to help and I was walking around with a HBA1c level of 97! I'm now on week 3 of using insulin but I'm doing it with no input or support/advice from the diabetes clinic at my GP surgery.....I'm completely lost, feel out of my depth and don't know which way to turn. 😱

I have just spoken with my GP surgery and let them know, politely, that I'm not at all happy or satisfied with the complete lack of follow up, I have asked to be referred to our local hospitals diabetes clinic, the specialist diabetes GP is going to ring me on Friday.

So what's happening right at this moment?! I haven't eaten anything at all today, only been drinking tea with milk but no sugar.....I test.....result.....18.3! 😱 meter showing ketone warning, unfortunately the meter they gave me only shows the warning but it can't give a proper result as in figures, it just tells you that ketones are in your blood.....off to the ladies room.....test urine.....max for glucose, ketones looked to me as negative.

I've been crying, shouting and feeling my stress levels rise by the minute. Honestly peeps, I don't understand any of this or how I correct it and get my levels back down

What I know and understand about insulin is absolutely minimal, next to nothing. But I believe I'm using Novamix 30.....dose 22....twice daily before eating and I'm also still taking Metformin 1000 mg twice daily.

Any help would be so gratefully received. 🙂

 

[Northerner]

Feeling overwhelmed is exactly where I am right now, I'm at the point where I'd like to just give up with anything and everything to do with diabetes. I'm Type 2, diagnosed in 2004, good control and HBA1c results always good right up until about a year ago when my levels started rising, changes in oral medication did nothing to help and I was walking around with a HBA1c level of 97! I'm now on week 3 of using insulin but I'm doing it with no input or support/advice from the diabetes clinic at my GP surgery.....I'm completely lost, feel out of my depth and don't know which way to turn. 😱

I have just spoken with my GP surgery and let them know, politely, that I'm not at all happy or satisfied with the complete lack of follow up, I have asked to be referred to our local hospitals diabetes clinic, the specialist diabetes GP is going to ring me on Friday.

So what's happening right at this moment?! I haven't eaten anything at all today, only been drinking tea with milk but no sugar.....I test.....result.....18.3! 😱 meter showing ketone warning, unfortunately the meter they gave me only shows the warning but it can't give a proper result as in figures, it just tells you that ketones are in your blood.....off to the ladies room.....test urine.....max for glucose, ketones looked to me as negative.

I've been crying, shouting and feeling my stress levels rise by the minute. Honestly peeps, I don't understand any of this or how I correct it and get my levels back down

What I know and understand about insulin is absolutely minimal, next to nothing. But I believe I'm using Novamix 30.....dose 22....twice daily before eating and I'm also still taking Metformin 1000 mg twice daily.

Any help would be so gratefully received. 🙂

Hi Bohemianne, welcome to the forum 🙂 I'm really sorry to hear you are feeling so low The high blood sugar levels will not be helping your mood, unfortunately, but hopefully you will start to feel a bit better once you start to get things back under control. You've made a good step in insisting on a referral, as it does appear that your surgery do not have the experience to help you with the insulin. How long have you been on that dose? I do wish that they wouldn't give people mixed insulins, they are far less adaptable and flexible than a regime called basal/bolus, which consists of injections of a slow-acting and a fast acting insulin separately - I would enquire about this option when you get your referral.

What are your fasting/waking blood sugar levels like? How do your levels vary through the day? It may be that the doses of insulin are simply insufficient for your current needs. I'd suggest doing regular tests before and after eating to try and see what pattern is revealed, if any. Try not to be overly concerned by the ketone warning on the meter - this is just a suggestion to check for ketones if your blood sugar levels are high, it can't actually detect them at all. Stress can raise your blood sugar levels, so this may be contributing as you are clearly under stress about your situation. Have you been taking your insulin if you haven't eaten? If not, this may also be contributing to the high levels you are seeing today. On a mixed insulin you should try to eat something if you can and continue to inject, as part of the insulin 'mix' is a slow-acting insulin that is there to manage the trickle of glucose released by your liver when you are not eating - if you don't inject at all then there may be insufficient insulin from your own pancreas to 'cover' this liver glucose.

Let me know if anything I am saying is unclear, or if you have any questions, we will be happy to help 🙂 And don't worry, you're not on your own with this, many of us have experienced similar confusion and frustration, especially when starting insulin.

 

[Jodee]

Welcome Bohemianne, so sorry you are dealing with this and feeling unsupported. I am sure you will find lots of support here from the insulin users (I am not one myself)

I wonder if you just have some diabetic food and portions may help you feel a bit better and eventually with regular meals and meds things will begin to balance and your BG levels will start coming down.

Hope things start to work out soon and the BG levels becoming more manageable.

 

[rebrascora]

Really excellent post by @Northerner.
Not much I can add except that I was in a similar situation a few months ago (HbA1c was 112 and despite my best efforts with diet and weight loss it was up to 114 five weeks later and they then started me on insulin. I am eventually getting to grips with the insulin and how much I need and managing to keep my BG below 10 most of the time ... hopefully I will make more progress in the next few months....but control with insulin is not as easy as the Health Care Professionals seem to think and it certainly doesn't happen overnight. There have been lots of ups and downs since Feb but I was at least fortunate to be started on Basal and Bolus insulins from the start. Hopefully you will get some help from the Diabetic clinic at the hospital soon, but in the meantime, follow the advice of Northerner and try not to get too stressed as that will make your BG higher. Don't despair, things will improve,but it is better that it happens slowly rather than a sudden change which can trigger see-sawing . A nice slow decline will be less of a shock for your body and I speak from experience here. Coming rattling down from 15 to 5 in a matter of 3 hours makes you feel pretty unwell, especially when your body has been running at 15+ for quite a while and got used to it being that high. .

 

[everydayupsanddowns]

Sorry to hear about your situation @Bohemianne - but really pleased you have found the forum.

Lots of T2s with years of experience in insulin use to compare notes with - and if nothing else we all 'get it' and are happy if you just need to RAAAAAANT.

In some people with T2 it seems that the insulin producing cells in the pancreas eventually burn out from their attempts to overcome insulin resistance. I don;t know if that applies in your case.

Hope you get some good advice from your referral and that that comes through really quickly. If you are that high while eating nothing then perhaps your body is going into 'starvation mode' and dumping extra stored glucose from liver and muscles to 'help out' . It certainly seems (from a T1 perspective - I confess I haven't much knowledge of the precise ins and outs of insulin in T2) that your current doses are not keeping up with your insulin requirement.

 

[Thebearcametoo]

Hi and welcome. Nothing to add in terms of info but we’re here to listen to you grumble. You must feel awful with a high BG and no sign of help. Hopefully the GP will be useful on Friday.

 

[Bohemianne]

Hi Bohemianne, welcome to the forum 🙂 I'm really sorry to hear you are feeling so low The high blood sugar levels will not be helping your mood, unfortunately, but hopefully you will start to feel a bit better once you start to get things back under control. You've made a good step in insisting on a referral, as it does appear that your surgery do not have the experience to help you with the insulin. How long have you been on that dose? I do wish that they wouldn't give people mixed insulins, they are far less adaptable and flexible than a regime called basal/bolus, which consists of injections of a slow-acting and a fast acting insulin separately - I would enquire about this option when you get your referral.

What are your fasting/waking blood sugar levels like? How do your levels vary through the day? It may be that the doses of insulin are simply insufficient for your current needs. I'd suggest doing regular tests before and after eating to try and see what pattern is revealed, if any. Try not to be overly concerned by the ketone warning on the meter - this is just a suggestion to check for ketones if your blood sugar levels are high, it can't actually detect them at all. Stress can raise your blood sugar levels, so this may be contributing as you are clearly under stress about your situation. Have you been taking your insulin if you haven't eaten? If not, this may also be contributing to the high levels you are seeing today. On a mixed insulin you should try to eat something if you can and continue to inject, as part of the insulin 'mix' is a slow-acting insulin that is there to manage the trickle of glucose released by your liver when you are not eating - if you don't inject at all then there may be insufficient insulin from your own pancreas to 'cover' this liver glucose.

Let me know if anything I am saying is unclear, or if you have any questions, we will be happy to help 🙂 And don't worry, you're not on your own with this, many of us have experienced similar confusion and frustration, especially when starting insulin.

Thank you so much for your helpful, understanding and supportive post Northerner, it's very much appreciated.

 

[Bohemianne]

Welcome Bohemianne, so sorry you are dealing with this and feeling unsupported. I am sure you will find lots of support here from the insulin users (I am not one myself)

I wonder if you just have some diabetic food and portions may help you feel a bit better and eventually with regular meals and meds things will begin to balance and your BG levels will start coming down.

Hope things start to work out soon and the BG levels becoming more manageable.

Thank you so much for your reply Jodee. 🙂

 

[Bohemianne]

Really excellent post by @Northerner.
Not much I can add except that I was in a similar situation a few months ago (HbA1c was 112 and despite my best efforts with diet and weight loss it was up to 114 five weeks later and they then started me on insulin. I am eventually getting to grips with the insulin and how much I need and managing to keep my BG below 10 most of the time ... hopefully I will make more progress in the next few months....but control with insulin is not as easy as the Health Care Professionals seem to think and it certainly doesn't happen overnight. There have been lots of ups and downs since Feb but I was at least fortunate to be started on Basal and Bolus insulins from the start. Hopefully you will get some help from the Diabetic clinic at the hospital soon, but in the meantime, follow the advice of Northerner and try not to get too stressed as that will make your BG higher. Don't despair, things will improve,but it is better that it happens slowly rather than a sudden change which can trigger see-sawing . A nice slow decline will be less of a shock for your body and I speak from experience here. Coming rattling down from 15 to 5 in a matter of 3 hours makes you feel pretty unwell, especially when your body has been running at 15+ for quite a while and got used to it being that high. .

Thank you for your reply, advice and support @rebrascora it's much appreciated.🙂

 

[Bohemianne]

Sorry to hear about your situation @Bohemianne - but really pleased you have found the forum.

Lots of T2s with years of experience in insulin use to compare notes with - and if nothing else we all 'get it' and are happy if you just need to RAAAAAANT.

In some people with T2 it seems that the insulin producing cells in the pancreas eventually burn out from their attempts to overcome insulin resistance. I don;t know if that applies in your case.

Hope you get some good advice from your referral and that that comes through really quickly. If you are that high while eating nothing then perhaps your body is going into 'starvation mode' and dumping extra stored glucose from liver and muscles to 'help out' . It certainly seems (from a T1 perspective - I confess I haven't much knowledge of the precise ins and outs of insulin in T2) that your current doses are not keeping up with your insulin requirement.

Thank you so much for your reply @everydayupsanddowns Yes they have told me that my pancreas is "tired" and not making enough insulin now, apparently this is a common occurrence in T2 as we get older, although not everyone with T2 will come across this problem. Thank you for giving me the hint about "starvation mode" I hadn't thought of that, a very similar thing happens on strict weight loss diets, the body jumps in to "help out"! The diabetes nurse at the surgery did explain that the doses would be small to start with to give my body chance to get used to the insulin, but I'm not sure when this is going to be looked at or adjusted because she hasn't followed up with me.

 

[rebrascora]

Hope you are feeling a little better today. It really can be a roller coaster ride and I have been in a few pretty low troughs when I have felt frustrated and scared and somewhat unsupported by medical professionals and just when I can't see my way forward things start to improve without me doing anything in particular. I would highly recommend eating very low carb and using the minimum amount of insulin and test regularly. I am currently doing a little experiment and testing my blood every hour to get a much better idea of what is going on. I self funded extra test strips for my Blood Glucose monitor and whilst my fingers are getting a little sore I feel so much more in control and I now have a snack if I am a little low or go out and get a bit of exercise... (just a 10 min run up a hill and back or up and down the stairs a few times)... if I am too high. If it is seriously high, I will give a corrective shot of insulin but I just use one unit at a time and give it a chance to work. Now that I eat very low carb, I don't need very much insulin at all and feel healthier for it.
Good luck and let us know how you get on.

 

[Hazel]

I have been T2 for around 20 years, on insulin for 10.

We get no official courses or help, but are expected to inject, with little or no knowledge. I really feel for you. Been there, done that and got the tee-shirt.

I can recommend a book called Cals and Carbs, which shows photos of differing portion size advising the carb content.

We are here to help when needed.

Good luck

 

[Bohemianne]

Hi and welcome. Nothing to add in terms of info but we’re here to listen to you grumble. You must feel awful with a high BG and no sign of help. Hopefully the GP will be useful on Friday.

Thank you for your reply, support and understanding @Thebearcametoo having people that understand all about it is worth it's weight in gold, as with an old building, without support we crumble but given support we can grow in strength. 🙂

 

[Bohemianne]

Hope you are feeling a little better today. It really can be a roller coaster ride and I have been in a few pretty low troughs when I have felt frustrated and scared and somewhat unsupported by medical professionals and just when I can't see my way forward things start to improve without me doing anything in particular. I would highly recommend eating very low carb and using the minimum amount of insulin and test regularly. I am currently doing a little experiment and testing my blood every hour to get a much better idea of what is going on. I self funded extra test strips for my Blood Glucose monitor and whilst my fingers are getting a little sore I feel so much more in control and I now have a snack if I am a little low or go out and get a bit of exercise... (just a 10 min run up a hill and back or up and down the stairs a few times)... if I am too high. If it is seriously high, I will give a corrective shot of insulin but I just use one unit at a time and give it a chance to work. Now that I eat very low carb, I don't need very much insulin at all and feel healthier for it.
Good luck and let us know how you get on.

Yes I'm trying my hardest to cut right down on the carbs @rebrascora and it will be very difficult for me to do since I'm a carb lover! but I do know that things like bread and pastry really raise my levels, in fact it seems that bread is worse than sugar for making me go into the high! I hope you get to learn a lot more about your diabetes and how your own body works, I think what you're doing is a great idea. With or without diabetes, we are all still individuals and our bodies will all act differently to different things so I think it's a very positive and helpful thing for us to learn exactly what makes our own bodies tick. 🙂

 

[Bohemianne]

I have been T2 for around 20 years, on insulin for 10.

We get no official courses or help, but are expected to inject, with little or no knowledge. I really feel for you. Been there, done that and got the tee-shirt.

I can recommend a book called Cals and Carbs, which shows photos of diddering portion size advising the carb content.

We are here to help when needed.

Good luck

Thank you @Hazel I wonder why they would think that we don't need this education? I've been reading loads of stuff on here and I'm working through the lessons on here too, I'm finding that very useful, it's a great program and a great idea and I will make sure that I share it around. Thank you for the book recommendation too.🙂

 

[rebrascora]

Yes, I was a carb lover too and ate a lot of bread/toast (mostly wholemeal) I also had a very bad sugar addiction. Like you I spike worse with bread etc than sweet stuff but I cut my intake of both down to almost none. It will be several weeks since I had any bread or pastry. I have a little dark chocolate if I really need something sweet and I am learning to develop a taste for it (I was a Cadbury's Dairy Mild girl through and through) but cutting right back has helped me to break the habit and I enjoy my food more now and don't feel deprived. The key to success is increasing your fat intake as well as eating lots of green leafy veg. Try swapping your morning cereal or toast for an omelette. You can mix and match fillings but mine generally includes mushrooms and cheese. I have a green salad and avocado with it and it is very satisfying to the point that I don't really fancy any lunch, just a snack like a few nuts or a chunk of cheese. If you don't like omelettes, try a cooked breakfast.... bacon, sausage egg, mushrooms and a tomato etc and a green salad with it... but no bread and go easy on beans. It was only when I replaced my morning porridge with an omelette that by BGs started to come down anywhere near normal.

 

[Bohemianne]

Thank you all so much for taking the time to reply to my post. 🙂
I have found all the replies helpful and very kind, and I'm soaking up all of advice that I've been given.

🙂

 

[SueEK]

Hi @Bohemianne, I have been reading your post with interest. I recently went on a Desmond course and we were told that 50% of T2 would need insulin as they got older and the slimmer you were when diagnosed the earlier you would need it. This has scared me as I read the issues people have with their insulin doses and lack of professional help they get, or rather don’t get.
I too was carb queen and continue to struggle with the bread, I can easily cut down drastically on the rest but bread etc is my problem as I’m a very fussy eater.
Anyway this is about you and I’m really sorry for the troubles you are encountering and can imagine how upset you must feel. Everyone on here is so lovely and supportive, great advice and understanding and there is nearly always someone on who can advise or just listen if you need to chat, rant or rave. Good luck x

 

[Bohemianne]

Hi @Bohemianne, I have been reading your post with interest. I recently went on a Desmond course and we were told that 50% of T2 would need insulin as they got older and the slimmer you were when diagnosed the earlier you would need it. This has scared me as I read the issues people have with their insulin doses and lack of professional help they get, or rather don’t get.
I too was carb queen and continue to struggle with the bread, I can easily cut down drastically on the rest but bread etc is my problem as I’m a very fussy eater.
Anyway this is about you and I’m really sorry for the troubles you are encountering and can imagine how upset you must feel. Everyone on here is so lovely and supportive, great advice and understanding and there is nearly always someone on who can advise or just listen if you need to chat, rant or rave. Good luck x

++
Hi @SueEK firstly I must apologise for being so late in replying to your post. It does seem to be fairly common for type 2's to eventually end up on insulin, but don't let this worry you too much because there are loads of type 2's that this doesn't happen too as well, also treatment ideas and medication is always moving forward as more research is done, so hopefully, maybe sometime in the future the need for type 2's to have to use insulin may become a thing of the past. 🙂
There were 2 other options for oral medication for me, but unfortunately I didn't get on with either of them, my body just didn't like them so I was getting lots of side effects that wouldn't go. We're all so different and the way that our bodies deal with diabetes and medications are so different too, so please don't despair and think that you will have to have insulin, you may not have to at all. 🙂
It's definitely the carbs that I'm finding it so hard to give up, I didn't used to be a fussy eater but as I've got older this is becoming more of an issue with me, it's something else that I have to work on.
Thank you for taking the time to reply to me Sue, and for your well wishes. x 🙂