Hi, I'm Lia and a type 2 diabetic with 'extras'. I have a rare condition called Neurofibromatosis or NF. As a result, I am in a wheelchair and my sugar levels for years were low and then presented high leading to me being diagnosed with type 2 diabetes. I take 2 types of insulin, metformin and another injection to increase the efficiency of the insulin. Not to mention my other meds. I am struggling to keep a 'positive' and 'low stress' disposition as the pain makes my sugar levels worse. I don't eat a lot of carbs, but that doesn't matter, my levels are still erratic (I don't eat lots of sugar either or consume lots of calories). I am ranging from mostly high of 8 to 32 (yes, close to a hyperglycemic coma) to even low as 2.4 (a nice hypoglycemic episode). Confused? Me too. I don't react in a normal way to medication so, I suppose, that I should not expect my diabetes medication to respond 'normally' either. What's normal? I say 'hello' to you all and thanks for reading my babble
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Hello. New to the site, type 2 for 7 years, insulin and tablets.
- Thread starter Lia Brown
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Ljc
Well-Known Member
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- Type 1.5 LADA
Hello @Lia Brown welcome to the forum.
Boy you sure do have a lot to contend with . I can’t be of much if any help as I have no knowledge of your other condition , with obviously impacts on your diabetes .
But I do have a few questions that may help us give you more appropriate advise .
What insulin’s are you on
Are you on fixed units or able to adjust your insulin to the carbohydrates you eat.
Are you under a DSN or just seeing/speaking the diabetes nurse at your Gp.
Have you noticed a pattern to your hypo’s/ hypers.
Boy you sure do have a lot to contend with . I can’t be of much if any help as I have no knowledge of your other condition , with obviously impacts on your diabetes .
But I do have a few questions that may help us give you more appropriate advise .
What insulin’s are you on
Are you on fixed units or able to adjust your insulin to the carbohydrates you eat.
Are you under a DSN or just seeing/speaking the diabetes nurse at your Gp.
Have you noticed a pattern to your hypo’s/ hypers.
Cherrelle DUK
Much missed Online Community Coordinator
Hi Lia, welcome to the forum.
Such a lot to contend with, it's no wonder you're feeling as you do. I second getting in touch with someone from your health team if you have one as they may be able to shed some light on things.
The only saving grace is the ability to test your BS after you eat so maybe you can keep a note of your reading for a week or two so you can see what's impacting you the most. Stress, hormones and medication has an impact also so maybe track that too.
Such a lot to contend with, it's no wonder you're feeling as you do. I second getting in touch with someone from your health team if you have one as they may be able to shed some light on things.
The only saving grace is the ability to test your BS after you eat so maybe you can keep a note of your reading for a week or two so you can see what's impacting you the most. Stress, hormones and medication has an impact also so maybe track that too.
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- Type 1
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Welcome to the forum @Lia Brown
Goodness, that sounds really challenging for you. Must be particularly difficult if your medications behave erratically, or interact in unpredictable ways.
Have you heard of Libre2? It is unlikely you would get funding unfortunately (unless some could be specially arranged because of your circumstances), it is a sensor which constantly monitors BG levels, so you can always check and see what they are, and (importantly) which direction they are heading / how fast. Additionally Libre2 can give audible alarms if your levels reach particular high or low values.
Sensors cost £48 for 14 days. I imagine they might be very useful for you.
Goodness, that sounds really challenging for you. Must be particularly difficult if your medications behave erratically, or interact in unpredictable ways.
Have you heard of Libre2? It is unlikely you would get funding unfortunately (unless some could be specially arranged because of your circumstances), it is a sensor which constantly monitors BG levels, so you can always check and see what they are, and (importantly) which direction they are heading / how fast. Additionally Libre2 can give audible alarms if your levels reach particular high or low values.
Sensors cost £48 for 14 days. I imagine they might be very useful for you.
Hi Martin, there is a query about possible NF2. I haven't had a DNA test as I was concerned about how it would affect my insurance. I have tumours through the plantar fascias of both of my feet with complex needs involvement making it inoperative. I was told that it was an unusual form of Von Recklinghausens. My hands are swollen a lot and very red and sore on the palms. I am now having even more trouble than before with my diabetes. My BG is repeatedly up as high as 30. I also have lows of 1.4 to 3.2. I am taking Novo Rapid (24 to 40 units, to reduce how high they are and for the food) with meals, Toujeo at night (130 units) and Trulicity (Dulaglutide at 1.5) once a week and am on Metformin 1000mg twice a day. I can't have Dapaglaflozin as I had side effects and I am, quite frankly, at the end of my tether. I don't consume lots of carbs or sugars. My problem is my base line. My HBA1c is in the 90's and upwards. The best thing to help was a 2 week trial of the Libre2 as the alarms when too high or low. However, they won't fund it for type 2. it's like they think that type 2 isn't worth the effort and that it must be your own fault. I don't even know if I am type 1 with insulin resistance (conditions like PCOS can cause this too). My poor diabetic nurse is also stumped and she thinks that my case is unusual and that I was probably type 1 at first as I had years of low BG events and it has now flipped to being high and insulin resistant. The extra is that we are certain that high pain levels make my sugar levels soar, as well as my WCC (which is permanently high 18 to 30). If any information can help I am all ears.
I have tumours through the plantar fascias of both of my feet with complex needs involvement making it inoperative. I was told that it was an unusual form of Von Recklinghausens. My hands are swollen a lot and very red and sore on the palms. I am now having even more trouble than before with my diabetes. My BG is repeatedly up as high as 30. I also have lows of 1.4 to 3.2. I am taking Novo Rapid (24 to 40 units, to reduce how high they are and for the food) with meals, Toujeo at night (130 units) and Trulicity (Dulaglutide at 1.5) once a week and am on Metformin 1000mg twice a day. I can't have Dapaglaflozin as I had side effects and I am, quite frankly, at the end of my tether. I don't consume lots of carbs or sugars. My problem is my base line. My HBA1c is in the 90's and upwards. The best thing to help was a 2 week trial of the Libre2 as the alarms when too high or low. However, they won't fund it for type 2. it's like they think that type 2 isn't worth the effort and that it must be your own fault. I don't even know if I am type 1 with insulin resistance (conditions like PCOS can cause this too). My poor diabetic nurse is also stumped and she thinks that my case is unusual and that I was probably type 1 at first as I had years of low BG events and it has now flipped to being high and insulin resistant. The extra is that we are certain that high pain levels make my sugar levels soar, as well as my WCC (which is permanently high 18 to 30). If any information can help I am all ears.
I was only allowed a 2 week 'troubleshooting ' trial of the Libre2. I absolutely loved it and the alarms were fantastic and it prevented 5 hypo events and stopped my levels from getting too high as I was alerted and could take corrective doses of insulin. Unfortunately, they won't fund it for type 2 and I was medically retired from the NHS 8 years ago due to requiring a wheelchair on a permanent basis (I am now 42 years old). They don't like you handling needles etc when you are in a wheelchair, not sure why . The cost of the sensors at £50 every two weeks is sadly, out of my price range. I would gladly use them if I could and highly recommend them to everyone. They are fantastic.
Hi, I am under my G.P's diabetic nurse, the specialist diabetes team for Lancs and South Lakes (I am in Southport) and have been with a Consultant who thinks that carbs are the fault of high levels (he has a bee in his bonnet about them that even my nurse admits about him). Luckily, thanks to the 2 weeks on Libre2, we can prove that it isn't. I don't eat lots of carbs or sugars and there is nothing 'food related' to account for my high levels. My specialist nurse is great and knows the truth of my unusual situation but there isn't anything else she can do. I am on Metformin 1g twice a day, Novo Rapid with meals, Toujeo at night and Trulicity (dulaglutide) once a week. She is now stumped too. There are no patterns at all to my irregularities. Which is why the 2 weeks on the Libre2 was used to see if there was a pattern of any kind.
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