Who do I turn to

Brettskee

Well-Known Member
Messages
99
Hi people posted a few things a couple of months ago still no change if read other posts been to see a new consultant last week thought this could be good I’m severely resistant to insulin all the consultants keep saying is up your insulin by 10 units I feel like I’m back at square one I’m on 180 units of tressiba a day 60/100 units of humalog and 1 once weekly injection of trulicity 1.5 my bloods have not really been under 20 for over 6/8 weeks I don’t feel poorly at these numbers but my neuropathy is so painful I struggle to walk so seeing this new consultant he literally said your blood sugars are very high he could see on his monitor as I’ve got a libre sensor which is linked to the hospital just up your tressiba 10 or 20 I asked him could you help me somehow with my neuropathy problems his reply was no go back to your doctor ok ile see you in 6 months I went out there scratching my head the nurse who took my blood pressure just before I went in I was 178 over 125 and bpm was 110 she did tell him near enough shut the door on her just don’t no where to go next any advice would be helpful I’m classed as a type two with severe insulin resistance sorry for the long post
 

Pipp

Moderator
Staff Member
Messages
10,695
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Yes the nurse rang me and told me she has ordered a blood pressure monitor for me should get it this week comming I’m on bp tablets already don’t no if they up the dose or not or give me something else thx
I often have very high blood pressure when it is checked by any Medical person.
At home it is fine. Nurse didn’t believe the readings from home until I took my BP machine to the surgery with the record of readings stored in it for her to see. Yet when she used my machine at surgery BP was just as high as with the surgery readings.
Despite not feeling nervous (though sometimes irritated and annoyed) I appear to have white coat syndrome.
 

Outlier

Well-Known Member
Messages
1,632
Type of diabetes
Type 2
Treatment type
Diet only
I definitely have white coat syndrome, and always warn the person taking the measurements. I have found that hospital staff are very laid back about it whereas GP staff are - not. I test at home, and over the years have confirmed that I am a fast reactor to any kind of stress. I earned my living going from tranquil to full-on emergency tactics for many years, so it's a useful attribute in the right arenas.

Also, "desirable" BP readings have been steadily lowered over the years.
 

Bewildered

Well-Known Member
Messages
129
Type of diabetes
Type 1
Treatment type
Insulin
I have insulin resistance, I’m LADA so have the joys of mixed needs etc. are you prescribed metformin? I’ve had issues with side effects from this so just started with a nutritionist who is type 1 herself. Only had one consult so slowly slowly, but she feels we can work on my resistance so that I don’t need metformin. I have yet to have this part addressed so have no pearls of wisdom. It’s not good enough to keep telling you to increase insulin and leave you in the gap between services. I hope you get some help, maybe see your nhs advocacy service for support - I’m not sure if they have different names in different areas but our local one is PALS, should have contact details on the trust website
 
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jennyfest

Member
Messages
5
Hi,
I am a type 2 diagnosed in 2005.

Way back in 2014 I was going through what you appear to be going through with Insulin Resistance and just kept getting told to up my dosage, my sugars were regularly over 30.0 at the time and my GP kept saying to me that when my meter said Hi it wasn't being friendly and I should really go to A&E, but I said it wasn't practical for me to go to A & E on a daily basis!

The local specialist Diabetic Team were as much use as a chocolate fire guard with one doctor having a go at me for failing to keep a single outpatient appointment when I was lying in a hospital bed at the time! I had phoned the clinic to let them know why I couldn't attend but he said that was not good enough! If he couldn't listen to me about that you can imagine how much he listened to me about my insulin.

The nurse at my practice said there must be something else going on (she thought it may be linked to me also having ME/CFS), and said if it was down to her which sadly it wasn't, she would have me into hospital and take me off all my diabetic meds and gradually try to reintroduce or try new things to see what worked and what didn't. I trusted her judgement.

Anyway naughtily I went home and went cold turkey and took myself off all the insulin and monitored and documented my blood sugars carefully for two weeks - it had little or no effect on my sugars in fact if anything they slightly improved without the insulin! I went back to my doctor armed with the results, they obviously did not approve of what I had done but I had at least proved my point that the insulin was having no effect and they finally listened to me.

My GP and Practice Nurse hunted round and came up with what at the time was a new tablet - Forxiga /Dapagliflozin and this changed things significantly for me. I started taking that combined with maximum Metformin and maximum Gliclazide, and my sugars finally started to come down and settled around the 15 - 20 mark. Over the following years with a concentrated effort on my diet as well I now have them down to the 10 - 15 mark still to high but so much better than they were. I can still get hypo like symptoms if it drops to 7.0 or below which mainly happens if I am in hospital, because again they do not understand my circumstances and without small but regular food intake my sugars can plummet with the resultant effect.

It has taken a long time but my GP is finally really pleased with my latest HBA1C results and the Community Team have just discharged me back to GP care, sadly a lot of damage has been done with having such high sugars for so long, particularly to my eyes, and the painful neuropathy in my feet.

I wouldn't suggest you try anything so drastic but do recommend you keep persevering with talking to your medical team, as sometimes doctors/nurses can get so stuck with following the 'normal procedures' they forget we are individuals and our bodies can react differently to the standard treatments especially depending on what other medical conditions/medications we have at the same time.

Good luck and I hope this gives you some encouragement that even if it does take years hopefully you will get somewhere eventually.
 

laurafowler

Member
Messages
5
Type of diabetes
Type 1
Hi people posted a few things a couple of months ago still no change if read other posts been to see a new consultant last week thought this could be good I’m severely resistant to insulin all the consultants keep saying is up your insulin by 10 units I feel like I’m back at square one I’m on 180 units of tressiba a day 60/100 units of humalog and 1 once weekly injection of trulicity 1.5 my bloods have not really been under 20 for over 6/8 weeks I don’t feel poorly at these numbers but my neuropathy is so painful I struggle to walk so seeing this new consultant he literally said your blood sugars are very high he could see on his monitor as I’ve got a libre sensor which is linked to the hospital just up your tressiba 10 or 20 I asked him could you help me somehow with my neuropathy problems his reply was no go back to your doctor ok ile see you in 6 months I went out there scratching my head the nurse who took my blood pressure just before I went in I was 178 over 125 and bpm was 110 she did tell him near enough shut the door on her just don’t no where to go next any advice would be helpful I’m classed as a type two with severe insulin resistance sorry for the long post
Hi
I have been a type 1 diabetic for 43 years and found I was taking more and more insulin to try and keep my sugars down. My doctor gave me metformin tablets to take aswell as my insulin and once it kicked in my sugars have been great and my insulin usage has dropped considerably and actually feels like its working now.
 

medievalbiker

Member
Messages
7
Type of diabetes
Treatment type
Insulin
Dislikes
CARS, MUSHROOMS
I have been insulin dependant for 22 years and all of them I have struggled to keep thing reasonable. As I am now on 292 units of tresiba, having recently just seen my consultant and him saying to increase it from the 280 I was on before I can safely say you have plenty of leway to go. I will say the consultant is reasonably happy with where things are and the way I am controlling my sugars, he just wants my nova rapide down (was 52 breakfast, 116 main meal, 25 snack, now 46, 96, 25 respecktively) and it is an improvement
 

Kessi

Newbie
Messages
4
Hi people posted a few things a couple of months ago still no change if read other posts been to see a new consultant last week thought this could be good I’m severely resistant to insulin all the consultants keep saying is up your insulin by 10 units I feel like I’m back at square one I’m on 180 units of tressiba a day 60/100 units of humalog and 1 once weekly injection of trulicity 1.5 my bloods have not really been under 20 for over 6/8 weeks I don’t feel poorly at these numbers but my neuropathy is so painful I struggle to walk so seeing this new consultant he literally said your blood sugars are very high he could see on his monitor as I’ve got a libre sensor which is linked to the hospital just up your tressiba 10 or 20 I asked him could you help me somehow with my neuropathy problems his reply was no go back to your doctor ok ile see you in 6 months I went out there scratching my head the nurse who took my blood pressure just before I went in I was 178 over 125 and bpm was 110 she did tell him near enough shut the door on her just don’t no where to go next any advice would be helpful I’m classed as a type two with severe insulin resistance sorry for the long post
That’s so bad you have been treated like this, have you thought of going on a pump, as my friend had to go on one as part of her insulin therapy and ok it’s not perfect but her control has become a lot better and hasn’t spiked so high, talk to someone and also see if you could see a diabetic consultant in another town or city worth a try as your body will not tolerate such high reading, I hope you can update your progress as you definitely need more suppor.
 
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nev 3454

Newbie
Messages
1
Type of diabetes
Type 1
Treatment type
Pump
Hi people posted a few things a couple of months ago still no change if read other posts been to see a new consultant last week thought this could be good I’m severely resistant to insulin all the consultants keep saying is up your insulin by 10 units I feel like I’m back at square one I’m on 180 units of tressiba a day 60/100 units of humalog and 1 once weekly injection of trulicity 1.5 my bloods have not really been under 20 for over 6/8 weeks I don’t feel poorly at these numbers but my neuropathy is so painful I struggle to walk so seeing this new consultant he literally said your blood sugars are very high he could see on his monitor as I’ve got a libre sensor which is linked to the hospital just up your tressiba 10 or 20 I asked him could you help me somehow ith my neuropathy problems his reply was no go back to your doctor ok ile see you in 6 months I went out there scratching my head the nurse who took my blood pressure just before I went in I was 178 over 125 and bpm was 110 she did tell him near enough shut the door on her just don’t noise where to go next any advice would be helpful I’m classed as a type two with severe insulin resistance sorry for the long post
Hi kessi I'm type 1 but sufferd the same insulin intolerance. My consultant arrangd for me to get a insulin pump. This worked very well for me rarely have bloods over 15 now. Average is 7.3
They used to be in the 20.0 or just saying High.
Hope this is some help
Nev
 
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Lifechanging#

Newbie
Messages
1
Type of diabetes
Type 2
Treatment type
Diet only
I had same problem just kept upping tablets until I ended up on insulin twice a day which I hated. I was a big lady 18 stone which I knew contributed to my problem so I went on the keto diet which has become my way of life For the last 3 yrs.I now weigh 9 stone 4lbs size 10/12 and I have been insulin and tablet free for 2 years ,best thing I ever did.I hope this might help somebody.
 

Brettskee

Well-Known Member
Messages
99
Thanks all for your comments just a couple of reply’s to some I’m on 2mg of metformin for about 7 years also I’ve been on insulin up to 760 units basal and 240 of bolus in the past also been on dapaglaflozin for about 8 years don’t no how to input my profile with meds I’m on etc thx again
 

Holisticrmp

Newbie
Messages
4
Type of diabetes
Type 1
Hi people posted a few things a couple of months ago still no change if read other posts been to see a new consultant last week thought this could be good I’m severely resistant to insulin all the consultants keep saying is up your insulin by 10 units I feel like I’m back at square one I’m on 180 units of tressiba a day 60/100 units of humalog and 1 once weekly injection of trulicity 1.5 my bloods have not really been under 20 for over 6/8 weeks I don’t feel poorly at these numbers but my neuropathy is so painful I struggle to walk so seeing this new consultant he literally said your blood sugars are very high he could see on his monitor as I’ve got a libre sensor which is linked to the hospital just up your tressiba 10 or 20 I asked him could you help me somehow with my neuropathy problems his reply was no go back to your doctor ok ile see you in 6 months I went out there scratching my head the nurse who took my blood pressure just before I went in I was 178 over 125 and bpm was 110 she did tell him near enough shut the door on her just don’t no where to go next any advice would be helpful I’m classed as a type two with severe insulin resistance sorry for the long post
Hi people posted a few things a couple of months ago still no change if read other posts been to see a new consultant last week thought this could be good I’m severely resistant to insulin all the consultants keep saying is up your insulin by 10 units I feel like I’m back at square one I’m on 180 units of tressiba a day 60/100 units of humalog and 1 once weekly injection of trulicity 1.5 my bloods have not really been under 20 for over 6/8 weeks I don’t feel poorly at these numbers but my neuropathy is so painful I struggle to walk so seeing this new consultant he literally said your blood sugars are very high he could see on his monitor as I’ve got a libre sensor which is linked to the hospital just up your tressiba 10 or 20 I asked him could you help me somehow with my neuropathy problems his reply was no go back to your doctor ok ile see you in 6 months I went out there scratching my head the nurse who took my blood pressure just before I went in I was 178 over 125 and bpm was 110 she did tell him near enough shut the door on her just don’t no where to go next any advice would be helpful I’m classed as a type two with severe insulin resistance sorry for the long post
I had similar issues with insulin resistance until I saw a wonderful specialist diabetes nurse who examined my abdomen and realised that I had developed hard lumps under the skin where I usually injected which were preventing the insulin from being absorbed. I now inject higher up my chest, and my blood sugars are pretty much now back to normal.
 

Brettskee

Well-Known Member
Messages
99
Thx holisticrmp I’ve never tried higher tried legs buttox and all abdomen I will definitely try higher thx again
 

lizzie_34759

Newbie
Messages
1
Type of diabetes
Type 2
Hi people posted a few things a couple of months ago still no change if read other posts been to see a new consultant last week thought this could be good I’m severely resistant to insulin all the consultants keep saying is up your insulin by 10 units I feel like I’m back at square one I’m on 180 units of tressiba a day 60/100 units of humalog and 1 once weekly injection of trulicity 1.5 my bloods have not really been under 20 for over 6/8 weeks I don’t feel poorly at these numbers but my neuropathy is so painful I struggle to walk so seeing this new consultant he literally said your blood sugars are very high he could see on his monitor as I’ve got a libre sensor which is linked to the hospital just up your tressiba 10 or 20 I asked him could you help me somehow with my neuropathy problems his reply was no go back to your doctor ok ile see you in 6 months I went out there scratching my head the nurse who took my blood pressure just before I went in I was 178 over 125 and bpm was 110 she did tell him near enough shut the door on her just don’t no where to go next any advice would be helpful I’m classed as a type two with severe insulin resistance sorry for the long post
Hi.
Sounds like you are not getting the proper support you need. What other diabetic medication are you taking?

I also have metformin forxiga and semaglutide added to the mix to keep my numbers under control as insulin alone was not working for me.

My consultant is very proactive and forward thinking. I was on trulicity but had to come off it because of supply issues.

You need to contact your GP about the blood pressure at your earliest convenience. High BP is not good for neuropathy or your heart or stress levels.
 
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Brettskee

Well-Known Member
Messages
99
Hi Lizzie I’m on trulicity 2.5 metformin 4 x tabs 180units tressiba 60/100 humalog 10mg dapaglaflozin and 267 of fenofibrate on quite a bit more meds for other things like 300 pregablin 150 tapentadol 30ml of oramorph 20 atorvastatin and 1 injection of elrezi 50mg for arthritis also sertraline folic acid 1 a day buscopan x3 as you can see quite a bit and also some others like fish oil x3 4 crabs of sulfasalazine sounds like a chemist shop also a blood pressure tab ramaprill this is why I don’t get hungry with this lot gp supposed of given me a bp monitor I’m in a que apparently thx for your reply