I’m so confused and fed up with it all.

[fiona35]

I’ve not posted for a while, but real life has got in the way, and it’s only now that I can focus on me. Last year was my year of hell as I got Covid and then developed long Covid which I still have, also my Dad passed away after me caring for him for the last 5 years.
I’ve had Type 2 for quite a while and have lost 6 stone since being diagnosed but I don’t understand why when I’ve lost all this weight, my sugars keep going up so they keep increasing my medication.
I really thought if I lost the weight, I’d be able to reduce some of my meds.
Rather than a fixed dose of Insulin twice a day, I’m now on a Basal Bolus regime, which does seem to be keeping my blood sugars stable, but I’m only injecting 38 units of Lantus and 5 units for my meals at the mo until I get the hang of things. Is that a usual dosage or a lot of insulin?
They let me try a sensor for 2 weeks before changing the regime and it was very interesting to see the spikes I was getting even though I was eating low/moderate carb. I don’t eat bread, pasta, rice or potatoes but I do like some Fruit.
I don’t eat breakfast and the Dawn Phenomenon was amazing to watch on the sensor from 4.30am onwards!! Since changing to the new regime the sensor was still showing the Dawn rise!
I’m now back to finger pricking as I don’t qualify for a sensor on the NHS, seems to me that Type 2’s are a second class citizen, if you are injecting 4 times a day does it really matter what type you have? Also I’m only allowed 100 test strips a month yet I’m supposed to test min of 4 times a day. In reality it’s around 6 tests a day as I also drive. I’ve worked out I can afford to fund 1 sensor a month so that will be better than nothing.
My diabetic nurse has confused me by saying I can now go ahead and have some potato with a salad, bread etc when I haven’t eaten anything like that for years. I nearly fell off the chair when she suggested I could meet friends in the coffee shop and have a piece of cake!
Am I doing all of this wrong, or should I still be sticking to my usual diet, albeit I lost weight but never bought my sugars down.
Thanks for reading if you’ve got to the end of my ramblings and moan.

 

[AndBreathe]

I’ve not posted for a while, but real life has got in the way, and it’s only now that I can focus on me. Last year was my year of hell as I got Covid and then developed long Covid which I still have, also my Dad passed away after me caring for him for the last 5 years.
I’ve had Type 2 for quite a while and have lost 6 stone since being diagnosed but I don’t understand why when I’ve lost all this weight, my sugars keep going up so they keep increasing my medication.
I really thought if I lost the weight, I’d be able to reduce some of my meds.
Rather than a fixed dose of Insulin twice a day, I’m now on a Basal Bolus regime, which does seem to be keeping my blood sugars stable, but I’m only injecting 38 units of Lantus and 5 units for my meals at the mo until I get the hang of things. Is that a usual dosage or a lot of insulin?
They let me try a sensor for 2 weeks before changing the regime and it was very interesting to see the spikes I was getting even though I was eating low/moderate carb. I don’t eat bread, pasta, rice or potatoes but I do like some Fruit.
I don’t eat breakfast and the Dawn Phenomenon was amazing to watch on the sensor from 4.30am onwards!! Since changing to the new regime the sensor was still showing the Dawn rise!
I’m now back to finger pricking as I don’t qualify for a sensor on the NHS, seems to me that Type 2’s are a second class citizen, if you are injecting 4 times a day does it really matter what type you have? Also I’m only allowed 100 test strips a month yet I’m supposed to test min of 4 times a day. In reality it’s around 6 tests a day as I also drive. I’ve worked out I can afford to fund 1 sensor a month so that will be better than nothing.
My diabetic nurse has confused me by saying I can now go ahead and have some potato with a salad, bread etc when I haven’t eaten anything like that for years. I nearly fell off the chair when she suggested I could meet friends in the coffee shop and have a piece of cake!
Am I doing all of this wrong, or should I still be sticking to my usual diet, albeit I lost weight but never bought my sugars down.
Thanks for reading if you’ve got to the end of my ramblings and moan.

Gosh, Fiona, you have had a tough time of late.

Two things, have they ever tested you, or done any investigations to rule out a slow onset T1? In adults developing T1 can be a slower process, and not picked up - particularly if you carried any weight when diagnosed.

Secondly; where do you live? In the Midlands there is a research study recruiting T2s using insulin to explore how valuable the Libre might be to them.

(There is also a proposal for a study for T2s not on insulin, but it hasn't progress yet to funding and recruitment, so will be a while before that's on the stocks.

 

[fiona35]

Thank you for responding back to me.
They’ve never tested for Type 1, I did a few years ago ask for a GAD test and a C Peptide test and got laughed out of the door, with a firm your a type 2! I guess I can ask again and see if I get the same reaction! Alternatively I suppose I could try and go private but I’m guessing it will be very expensive? If I’ve had diabetes for so long, will these tests show anything up especially as I inject insulin and have done for the last 2 years.

I live in Bedfordshire so wouldn’t be eligible for the trial in the Midlands but thank you for suggesting it.

 

[Valsal]

Gosh, Fiona, you have had a tough time of late.

Two things, have they ever tested you, or done any investigations to rule out a slow onset T1? In adults developing T1 can be a slower process, and not picked up - particularly if you carried any weight when diagnosed.

Secondly; where do you live? In the Midlands there is a research study recruiting T2s using insulin to explore how valuable the Libre might be to them.

(There is also a proposal for a study for T2s not on insulin, but it hasn't progress yet to funding and recruitment, so will be a while before that's on the stocks.

Hi. How do I find out about the Midlands research study
Thanks

 

[p11carb]

My diabetic nurse has confused me by saying I can now go ahead and have some potato with a salad, bread etc when I haven’t eaten anything like that for years. I nearly fell off the chair when she suggested I could meet friends in the coffee shop and have a piece of cake!

That rings a bell! I've been led by 3 iterations of diab nurses and still get this same guff which is probably why I had a heart attack due to heart disease after 20 years t2 . I have gone low carb 4 months and finger pricking to work out what works/doesn't. So pasta, bread, rice, potato, cereals etc all out and so am interested to hear you have done this. When I told the nurse I get BG 15 after a potato was told not to worry insulin will react and bring it down! An earlier nurse told me to check carefully if my breakfast cereal had sugar in it. Never a word challenging why r u eating cereals!
Taking self control is the only way forwards I my book.
All the best with your challenges.

 

[fiona35]

Thank you all for your replies.
I will continue on my usual diet and skip the carbs, although I will allow myself my fruit ( I only have 2 portions a day and I really don’t want to give that up! ) it’s mainly berries anyway but occasionally it’s a juicy Apple or Peach!
I did ask the DSN about the blood tests and surprisingly she didn’t laugh at me. She said they wouldn’t do a GAD test as I’d had diabetes too long, but they may consider a C Peptide test. She was going to speak to the consultant at the hospital, especially as she asked if there was a history of Type 1 in the family and there is. No one has ever asked me that before.

 

[JoolsSugar]

This is interesting and I don't know how we as non-medical people are supposed to understand the ramifications of eating/injecting when even medical professionals give conflicting information. I lost 2.5 stone a couple of years ago, then started injecting, tah dah the weight came back, so I want to lose the weight again but don't know how to balance the reduced intake of sugar/calories with the possible reduction in insulin requirement and the probability of hypos.
It seems that diabetic specialists are not as fully informed or trained as they should be. My GP practice appears to have just put a 'bumb on a seat' and called them the Diabetic specialist.
I have been taking Gabapentin tablets since just after starting injecting a couple of years ago as I had a horrible allergic reaction to the insulin (well documented in medical journals and articles), but now they've taken away my Gabapentin prescription without reviewing the insulin I'm using. I have a backlog of tablets, thankfully, but what happens when they run out?!?! Do I start to burn again, literally my skin feels like it's on fire as I'm allergic to the zinc used to stabilise the insulin.
Lots to unwrap there, no replies expected, just having a bit of a 'rant', so thanks for reading

 

[Prancy]

This is interesting and I don't know how we as non-medical people are supposed to understand the ramifications of eating/injecting when even medical professionals give conflicting information. I lost 2.5 stone a couple of years ago, then started injecting, tah dah the weight came back, so I want to lose the weight again but don't know how to balance the reduced intake of sugar/calories with the possible reduction in insulin requirement and the probability of hypos.
It seems that diabetic specialists are not as fully informed or trained as they should be. My GP practice appears to have just put a 'bumb on a seat' and called them the Diabetic specialist.
I have been taking Gabapentin tablets since just after starting injecting a couple of years ago as I had a horrible allergic reaction to the insulin (well documented in medical journals and articles), but now they've taken away my Gabapentin prescription without reviewing the insulin I'm using. I have a backlog of tablets, thankfully, but what happens when they run out?!?! Do I start to burn again, literally my skin feels like it's on fire as I'm allergic to the zinc used to stabilise the insulin.
Lots to unwrap there, no replies expected, just having a bit of a 'rant', so thanks for reading

How are things going with you?

 

[Jantype1]

Thank you for responding back to me.
They’ve never tested for Type 1, I did a few years ago ask for a GAD test and a C Peptide test and got laughed out of the door, with a firm your a type 2! I guess I can ask again and see if I get the same reaction! Alternatively I suppose I could try and go private but I’m guessing it will be very expensive? If I’ve had diabetes for so long, will these tests show anything up especially as I inject insulin and have done for the last 2 years.

I live in Bedfordshire so wouldn’t be eligible for the trial in the Midlands but thank you for suggesting it.

Hi, I was in a similar situation to you - besaue I am overweight, and 67 years old it was presumed that I had type 2. Luckily they did ask me if there was a family history of type 1 and of course there is so they did the blood test (GAD) Meanwhile because my readings were so high they started me on treatment for type 2, 20 units glargine, 2 metformine tablets per day and a weekly Trulicity injection. Too much!!! I was also on a very low carb diet, some days no carbs. This resulted in hypos everyday, low low energy and gloom. Luckily here in France I had a nurse coming in everyday to monitor my glucose and teach me how to do the injections. I had to stop taking metformine, Trulicity because of some spectacular digestive issues and the nurse decreased my insulin to 10 units once day. However I kept getting these huge post prandial spikes whereas the rest of the time my sugar was pretty stable. My energy levels slowly restored and six weeks after being diagnosed as type 2 I was told I am type 1. My pancreas is still producing some insulin and I've been told that I'm in the honeymoon period (read very unpredictable) and I have learnt to adjust my daily injections depending on what I will be eating and the amount of exercice I will be doing, between 6 and 12 units. I find that when I play tennis this initially raises my sugar then the next day I get hypos sometimes spreading over two days so I will reduce to 6/8 units. However this doesn't always happen.....so I end up hyper! Oh the joys of diabetes.
My point is, and sorry for rambling, you really need to know if you are type 1 and it's not too late to find out. The treatment that you receive depends on the type you are. Luckily my body seemed to reject the metformine and the trulicity. Good luck! I'd be really interested to know how you get on.

 

[Jenny 105]

I am type 2 taking 15 units of Levemir in a pen on waking , plus metformin 500 twice. I get no explanation or advice from one main Nurse. So Ive booked a telephone call with another who seems to be more upfront and helpful. By the way I weigh 98lbs 49kg (?)
What should I be asking ? And doing in the meantime
This last week Ive had a lowish carb sorta diet with low sugar. Next week Im thinking of upping the carbs and comparing notes in readiness

 

[fiona35]

Thought I’d give all you helpful people an update.
I finally got an appt to see my GP and we discussed me! He’s none the wiser from the hospital either so agreed he would refer me to another hospital but he warned me that as it’s a second referral I’ll have to wait. The appt letter has come through for Jan 2025! He also advised me not to go private unless I could afford it as it would cost min of £3000 for all the blood tests needed.
In the meantime I’m off all my diabetic tablets and am just taking Lantus & Novorapid and am labelled as a type 2 Diabetic on my medical records.

 

[Jenny 105]

It might be a good idea to contact the department concerned . If you able to, ask if they would put you on a cancellation list. Give any days or periods you are not available. It doesnt always work but its been successful for me in other hospital departments.

 

[fiona35]

It might be a good idea to contact the department concerned . If you able to, ask if they would put you on a cancellation list. Give any days or periods you are not available. It doesnt always work but its been successful for me in other hospital departments.

Thank you, I will give this a try but as this is a second referral, I don’t hold out much luck. But you never know unless you try.