Can ANYONE offer advice?

DeborahC · Apr 13, 2019

I was told many many years ago I was to start tablets for T2 but then 2 yr ago told I actually have T1. I was started on Mantua and Nova rapid. My HBa1c was 73% at this time. Months passed, information changed, I was then told that my blood results showed I was producing massive amounts of insuline but my body wasn't responsive to it, so perhaps not T1 ...back to land of unknown. HBa1c at 84 at this point. I'm careful with diet, excersize regular basis and I also have neuropathy as well as fybromyalgia. Started to loose feeling in right foot, told it's linked to diabetes. Latest hba1c was 92%. I'm slowly loosing weight and the will to fight on.... struggle to see consultant (last appnt was october) redone full bloods, including insuline resistance tests, in March...These were going to decide finaly if im t1 or t2 or something else. Still awaiting results... my BG reads 23.7 or 18 on a good day. Despite cutting out carbs, and dramatic change of diet. Have some weeks where my BG reads HI for 5-6 days. Only advise I get is "increase tresiba". I'm on 54 units. Nova Rapid is often 18units to 23 units. And STILL I'm floating around the 18 mark on BG. IM AT THE END OF MY TETHER. Anything else I can do? Anything that's been missed? I'm now being referred for vascular surgery due to "poorly managed diabetes"..but I'm doing everything in my power to manage it my end. Or am I? I welcome ANY TIPS OR GUIDANCE.

EllieM · Apr 13, 2019

I can't help feeling that the medical profession hasn't been trying very hard to help you, but the sad truth is that it's sometimes quite difficult to differentiate between types of diabetes and it sounds like you are exhibiting slightly contradictory symptoms.
But it sounds that they've (finally?) done a comprehensive set of tests so hopefully you will get some answers soon.

DeborahC said:
Only advise I get is "increase tresiba". I'm on 54 units. Nova Rapid is often 18units to 23 units. And STILL I'm floating around the 18 mark on BG.

There's no set amount of insulin that people need, so if they tell you to increase the insulin I'd be inclined to try it. Running high blood sugars and losing weight does sounds an awful lot like you haven't got as much insulin as you need. (Though it also sounds like you've got some strange metabolic symptoms so it's hard to make suggestions.)

Only other suggestions I can make are

As regards cutting out carbs, how low have you gone? Some of the T2s on here have to go very low indeed to let their bodies cope.
Other than diet (low carb) and medication (as supplied by your medical team) the only other thing that I can think of that may help insulin resistance is exercise - maybe try to do this while you've got insulin on board rather than just before a meal?
Finally, illness and stress can have a catastrophic effect on blood sugar (as in raising it). If you can make sure you're not ill (eg a urine infection?) you may find your sugars come down.

Personally, in your position, I'd be hassling my GP and/or diabetic team to get more help. With figures like that you run a real risk of diabetic ketoacidosis and if you get that you need immediate hospital treatment. Actually, with those figures you should consider dialling 111 (assuming you are in UK) and get their advice as to whether you should go to hospital now. Failing that, make an appointment to see your GP on Monday.

Good luck. Please don't give up the fight to get some help from your medical team. I hope you let us know how you go.

Edited to add - just noticed you've put your thread in the Type 3c forum. Unless you're sure you've got this (I understand the desire not to lay claim to T1 or T2 and 3c is certainly "other") I'd be tempted to ask a moderator to move your thread to a more visited forum - maybe "Ask a Question".

HSSS · Apr 13, 2019

I don’t mean to be rude but my first question regarding diet is what do you mean by low carb and careful with diet?. Is it just sugars you watch or do you limit all carbs such as rice, pasta, potato, flour all grains and cereals checking labels of anything that passes your mouth? Ho many carbs a day do you eat? Could you be missing some/lots in your count?

Perhaps a typical days food diary might give us some clues if diet is a factor or not

DeborahC · Apr 13, 2019

HSSS said:
I don’t mean to be rude but my first question regarding diet is what do you mean by low carb and careful with diet?. Is it just sugars you watch or do you limit all carbs such as rice, pasta, potato, flour all grains and cereals checking labels of anything that passes your mouth? Ho many carbs a day do you eat? Could you be missing some/lots in your count?

Perhaps a typical days food diary might give us some clues if diet is a factor or not

Hi, thank you for your reply. Not rude at all.

I measure carbs closely, no breads, palm size of pasta, no rice, Limit diet to fresh meat and vegetables . For rice, I grate cauliflower, I use purple top milk, and track every bite via food diary. I plan my daily food intake so I know exactly what I'm taking on board. Yet, despite careful attention to detail I'm stuck. As soon as I eat anything with 10g of carbs in, my BG spike very high (28+) it's very hard work, and extremely difficult for me to manage. I'm utterly exhausted daily. Not sure if that's diet related or diabetes related.

Bluetit1802 · Apr 13, 2019

You have a very unusual case, and my only advice is to hassle your GP and try to see the diabetes consultant as soon as possible. Those levels are dangerous, as you know already. It may even be worth ringing 111 or calling in at A&E. I hope you get some answers.

DeborahC · Apr 13, 2019

EllieM said:
I can't help feeling that the medical profession hasn't been trying very hard to help you, but the sad truth is that it's sometimes quite difficult to differentiate between types of diabetes and it sounds like you are exhibiting slightly contradictory symptoms.
But it sounds that they've (finally?) done a comprehensive set of tests so hopefully you will get some answers soon.

There's no set amount of insulin that people need, so if they tell you to increase the insulin I'd be inclined to try it. Running high blood sugars and losing weight does sounds an awful lot like you haven't got as much insulin as you need. (Though it also sounds like you've got some strange metabolic symptoms so it's hard to make suggestions.)

Only other suggestions I can make are

As regards cutting out carbs, how low have you gone? Some of the T2s on here have to go very low indeed to let their bodies cope.

Other than diet (low carb) and medication (as supplied by your medical team) the only other thing that I can think of that may help insulin resistance is exercise - maybe try to do this while you've got insulin on board rather than just before a meal?

Finally, illness and stress can have a catastrophic effect on blood sugar (as in raising it). If you can make sure you're not ill (eg a urine infection?) you may find your sugars come down.

Personally, in your position, I'd be hassling my GP and/or diabetic team to get more help. With figures like that you run a real risk of diabetic ketoacidosis and if you get that you need immediate hospital treatment. Actually, with those figures you should consider dialling 111 (assuming you are in UK) and get their advice as to whether you should go to hospital now. Failing that, make an appointment to see your GP on Monday.

Good luck. Please don't give up the fight to get some help from your medical team. I hope you let us know how you go.

Edited to add - just noticed you've put your thread in the Type 3c forum. Unless you're sure you've got this (I understand the desire not to lay claim to T1 or T2 and 3c is certainly "other") I'd be tempted to ask a moderator to move your thread to a more visited forum - maybe "Ask a Question".

Thank you kindly for your suggestions. I have just taken a look at my more recent notes, it states that my insulin levels are 3563 of which I'm producing myself. Got to admit, this means very little to me as I don't know what is normal/expected amounts. Consultant also stated in last letter that "although you're producing large amounts of insulin, you appear to be resistant to this"..... I've only ever had2 hypos, but struggle terribly when my sugars go too hi. Often taking several days to get them back down again, with 3 hourly correcting doses, I use the Accu check Aviva Expert carb counting machine which helps me calculate the doses, but I also have a freestyle libre for the days when FP is just to sore.

I'll definitely hound my gp come Monday, and the consultant Secretary for next appointment. If I know what to ask them, I feel they will listen to me.

DeborahC · Apr 13, 2019

EllieM said:
I can't help feeling that the medical profession hasn't been trying very hard to help you, but the sad truth is that it's sometimes quite difficult to differentiate between types of diabetes and it sounds like you are exhibiting slightly contradictory symptoms.
But it sounds that they've (finally?) done a comprehensive set of tests so hopefully you will get some answers soon.

There's no set amount of insulin that people need, so if they tell you to increase the insulin I'd be inclined to try it. Running high blood sugars and losing weight does sounds an awful lot like you haven't got as much insulin as you need. (Though it also sounds like you've got some strange metabolic symptoms so it's hard to make suggestions.)

Only other suggestions I can make are

As regards cutting out carbs, how low have you gone? Some of the T2s on here have to go very low indeed to let their bodies cope.

Other than diet (low carb) and medication (as supplied by your medical team) the only other thing that I can think of that may help insulin resistance is exercise - maybe try to do this while you've got insulin on board rather than just before a meal?

Finally, illness and stress can have a catastrophic effect on blood sugar (as in raising it). If you can make sure you're not ill (eg a urine infection?) you may find your sugars come down.

Personally, in your position, I'd be hassling my GP and/or diabetic team to get more help. With figures like that you run a real risk of diabetic ketoacidosis and if you get that you need immediate hospital treatment. Actually, with those figures you should consider dialling 111 (assuming you are in UK) and get their advice as to whether you should go to hospital now. Failing that, make an appointment to see your GP on Monday.

Good luck. Please don't give up the fight to get some help from your medical team. I hope you let us know how you go.

Edited to add - just noticed you've put your thread in the Type 3c forum. Unless you're sure you've got this (I understand the desire not to lay claim to T1 or T2 and 3c is certainly "other") I'd be tempted to ask a moderator to move your thread to a more visited forum - maybe "Ask a Question".

But it sounds that they've (finally?) done a comprehensive set of tests so hopefully you will get some answers soon......... I sure do hope so. However, the SAME bloods were done in October 2018, I'm still waiting on an appointment with the consultant. They redone bloods following me contacting the clininc during a period of time when I needed 4 hrly injections of novarapid. Test done 3march.... Still waiting on results . Was promised change in regime, in October. Not occurred. I know clinics are extremely busy, and I sympathise. But how sick do I need to get before they see me? I'm now told I've to get vascular surgery due to poor diabetic care (bg very high for so long has apparently caused a vascular issue??? I am awaiting more info on that too) so so sorry, I feel like I'm just moaning. That is NOT my intention. My diabetic nurse is very supportive, I'm just worried about the lack of information I get.

EllieM · Apr 13, 2019

DeborahC said:
I know clinics are extremely busy, and I sympathise. But how sick do I need to get before they see me? I'm now told I've to get vascular surgery due to poor diabetic care (bg very high for so long has apparently caused a vascular issue??? I am awaiting more info on that too) so so sorry, I feel like I'm just moaning. That is NOT my intention. My diabetic nurse is very supportive, I'm just worried about the lack of information I get.

It sounds like you have an extremely unusual case, and unfortunately clinics often don't have the time to consider unusual cases. You genuinely need more time than a boring T1 like me. I feel that you have every right to moan. I'm glad your nurse is supportive and really really hope that you get a senior endocrinologist to pay some serious attention to your symptoms very soon.

Grant_Vicat · Apr 13, 2019

DeborahC said:
But it sounds that they've (finally?) done a comprehensive set of tests so hopefully you will get some answers soon......... I sure do hope so. However, the SAME bloods were done in October 2018, I'm still waiting on an appointment with the consultant. They redone bloods following me contacting the clininc during a period of time when I needed 4 hrly injections of novarapid. Test done 3march.... Still waiting on results . Was promised change in regime, in October. Not occurred. I know clinics are extremely busy, and I sympathise. But how sick do I need to get before they see me? I'm now told I've to get vascular surgery due to poor diabetic care (bg very high for so long has apparently caused a vascular issue??? I am awaiting more info on that too) so so sorry, I feel like I'm just moaning. That is NOT my intention. My diabetic nurse is very supportive, I'm just worried about the lack of information I get.

I don't think you're moaning at all. As an old boss once said to me "In the end the most important person is yourself". You have every right, particularly with a serious condition, to expect timely and effective assistance from the NHS. Too often patients feel they are being a nuisance, but we pay for the service. Maybe, in addition to the advice above, you could contact PALS at the hospital and especially mention "Was promised change in regime, in October. Not occurred. I know clinics are extremely busy, and I sympathise. But how sick do I need to get before they see me?" That, in my past experience, usually speeds things up. The very best of luck.

DeborahC · Apr 13, 2019

Grant_Vicat said:
I don't think you're moaning at all. As an old boss once said to me "In the end the most important person is yourself". You have every right, particularly with a serious condition, to expect timely and effective assistance from the NHS. Too often patients feel they are being a nuisance, but we pay for the service. Maybe, in addition to the advice above, you could contact PALS at the hospital and especially mention "Was promised change in regime, in October. Not occurred. I know clinics are extremely busy, and I sympathise. But how sick do I need to get before they see me?" That, in my past experience, usually speeds things up. The very best of luck.

Thank you so much. Everyone has been very supportive. I think PALS is the way forward,. Kind regards.

DeborahC · Apr 13, 2019

EllieM said:
It sounds like you have an extremely unusual case, and unfortunately clinics often don't have the time to consider unusual cases. You genuinely need more time than a boring T1 like me. I feel that you have every right to moan. I'm glad your nurse is supportive and really really hope that you get a senior endocrinologist to pay some serious attention to your symptoms very soon.

I'm going to ask that question "how do i get to see a senior endocrinologist to pay some serious attention to my symptoms very soon.?"..... I'll update this thread with the answer and any outcomes.
I was promised pump therapy, and to be funded for libre, but neither has came about. All I've heard is "you need to get your numbers beter".... but how much more can I do? Injections 6- 8 times a day, when hi, testing 4hrly. Loosing days off work due to lack of sleep at night with alarms every 3 hours to check bloods. My tummy area is black n blue, it hurts now when I inject , takes about 3 mins to inject opposed to 30seconds like it used to. Probably going to lose my job due to amount of sick days, totally at wits end. Hopefully this is it. I can get heard come Monday.

Pipp · Apr 13, 2019

DeborahC said:
Thank you so much. Everyone has been very supportive. I think PALS is the way forward,. Kind regards.

I agree PALS at the hospital should be able to help. Make sure you give them info about your previous appointments, and who said what about the pump and the Libre. I have seen a similar situation with someone I know well. PALS did sort it quickly, and that person got the pump and Libre within 2 weeks of contacting PALS, and is now managing blood glucose much better, is sleeping well, feeling and looking healthier emotionally and physically.
Hope you are soon sorted.

DeborahC · Apr 13, 2019

Pipp said:
I agree PALS at the hospital should be able to help. Make sure you give them info about your previous appointments, and who said what about the pump and the Libre. I have seen a similar situation with someone I know well. PALS did sort it quickly, and that person got the pump and Libre within 2 weeks of contacting PALS, and is now managing blood glucose much better, is sleeping well, feeling and looking healthier emotionally and physically.
Hope you are soon sorted.

Thank you.

DCUKMod · Apr 13, 2019

@DeborahC - Have you brought any of this up with your GP?

I appreciate that your diabetes care may be handled in a hospital clinic, but to be honest, it sounds like things are somewhat lacking, in terms of things being at all joined up.

In your shoes, as well as contacting PALS, I would be inclined to make myself an appointment with my GP and to tell him how all of this makes me feel. I have a condition which is extremely atypical and have seen two consultants about it, and neither can get to the heart of the matter. When I go through a period of "what the heck's going on here?", or this doesn't make any sense to me, then I write to my GP and tell her about it. I write it down, so that I can check I have included everything I meant to, without a load of waffle or apologising for feeling as I do at that time. I have found that works really well.

What will sometimes happen is my GP will contact the Endo, prior to my appointment with her, to get Consultant input, without me having to eitherrr wait for an appointment or o actually see him.

Your GP will be able to email these folks far more easily than you, and you can bet your bottom dollar he/she'd get a response.

It can't do any harm, and the more people you tell about what's going on and how you feel about it, the greater chances of something happening.

When our health care starts going wrong, it can just keep travelling in the ssame direction.

Good luck with it all.

DeborahC · Apr 13, 2019

DCUKMod said:
@DeborahC - Have you brought any of this up with your GP?

I appreciate that your diabetes care may be handled in a hospital clinic, but to be honest, it sounds like things are somewhat lacking, in terms of things being at all joined up.

In your shoes, as well as contacting PALS, I would be inclined to make myself an appointment with my GP and to tell him how all of this makes me feel. I have a condition which is extremely atypical and have seen two consultants about it, and neither can get to the heart of the matter. When I go through a period of "what the heck's going on here?", or this doesn't make any sense to me, then I write to my GP and tell her about it. I write it down, so that I can check I have included everything I meant to, without a load of waffle or apologising for feeling as I do at that time. I have found that works really well.

What will sometimes happen is my GP will contact the Endo, prior to my appointment with her, to get Consultant input, without me having to eitherrr wait for an appointment or o actually see him.

Your GP will be able to email these folks far more easily than you, and you can bet your bottom dollar he/she'd get a response.

It can't do any harm, and the more people you tell about what's going on and how you feel about it, the greater chances of something happening.

When our health care starts going wrong, it can just keep travelling in the ssame direction.

Good luck with it all.

Thank you for your help with this. I think writing it down will be very effective.

DCUKMod · Apr 13, 2019

DeborahC said:
Thank you for your help with this. I think writing it down will be very effective.

The writing can be cathartic, and the benefit of dropping it in a few days before an appointment is that a chunk of the appointment isn't spent with all that explaining, and she has a chance to think about things, just like I have beforre my appointment.

It also really cuts down the chances of walking out of an appointment having forgotten to say something really important. We've all done that, no?

DeborahC · Apr 13, 2019

DeborahC said:
Thank you for your help with this. I think writing it down will be very effective.

I've brought it up with the diabetic nurse at gp surgery, but not so much with the gp. But I'm going to ring and make an appointment. Not wait till the one they gave me 1st week in May. I feel like I'm doing everything in my power to reduce my BG but getting limited support from consultants...prob due to complexity of my other medical issues. But, I don't want another TIA, nor do I want to loose limbs like my mum due to poor diabetic care, nor heart attack caused by long-term high blood glucose. I want to live, enjoying my grandkids and travel. I'm not for the rubbish heap yet....

EllieM · Apr 13, 2019

DeborahC said:
My tummy area is black n blue, it hurts now when I inject , takes about 3 mins to inject opposed to 30seconds like it used to.

OK, I have no idea what's going on about your other symptoms, but I can see a potential issue here. It sounds like you may have severely overused your tummy as an injection site, and need to give it a rest for a while. So there are other sites (eg thighs, even arms) and you may find that your insulin works much better when not injected into an overused site. (Your diabetic nurse should have already talked to you about this, as it's a standard diabetic issue.) Just a thought, and maybe not relevant, but I thought I'd put it out there in case it is.

DeborahC · Apr 13, 2019

EllieM said:
OK, I have no idea what's going on about your other symptoms, but I can see a potential issue here. It sounds like you may have severely overused your tummy as an injection site, and need to give it a rest for a while. So there are other sites (eg thighs, even arms) and you may find that your insulin works much better when not injected into an overused site. (Your diabetic nurse should have already talked to you about this, as it's a standard diabetic issue.) Just a thought, and maybe not relevant, but I thought I'd put it out there in case it is.

Hi.thank you for this information, thighs are a no go area due to 'other issue'. Thighs can't be used. Arms are a possibility, but would need someone else to inject due to 'other issue and limited mobility. This over use of tummy is a good suggestion though. I can but try and use elsewhere

EllieM · Apr 14, 2019

https://www.healthline.com/health/diabetes/insulin-injection#how-to-inject

They are saying thighs, arms and buttocks?

Can ANYONE offer advice?

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