Still struggling

[Rowgirl]

It's now a year since I was diagnosed. I've lost 3 stone, I now weigh 8 stone 12 lbs. my blood sugars a more labile now than ever, mainly between 10 - 20mmols. Yesterday after breakfast (greek yoghurt) my blood sugar was 20, I had keytones and glucose in my urine. I phoned the gp who said go to A/E. I spent the morning there, given some IV fluids, fortunately I wasn't in DKA, my blood keytone 1.6, blood sugar 19. Other bloods ok. I've to get in touch with the gp to try and get my blood sugars more under control. I'll phone today. I'm at loss at what to do, i've cut out so much in my diet to try and help, no bread, pasta, rice, sugar foods etc. I open the fridge and don't know what to eat! So hopefully the gp will help me?

 

[jonathan183]

I'd suggest a c-peptide test if you have not had one already and also antibodies test.

 

[Deleted member 527103]

If your levels are rising so much without carbs, I would discuss with your GP whether you could have been misdiagnosed and have Type 1 diabetes.
There is a myth that only children get diagnosed with Type1 whereas more than half of the people with the condition were diagnosed as adults. Some time ago, I read an article which said that more than a third of adults with Type 1 were initially misdiagnosed.
Some doctors will change the diagnosis others may require additional blood tests which are what @jonathan183 suggests.

 

[Daibell]

Hi. From what you say it is possible you are a mis-diagnosed T1/LADA. I've been down that route. Insist on a referral to your diabetes clinic have a C-Peptide and GAD test; you always have an option to pay and have these done privately as I did. What meds are you on? You may well need to be on insulin.

(One word edit by moderator for word choice)

 

[Rowgirl]

Thank you all for your help. I phoned the gp again this morning, and the diabetic nurse called back who wanted me to go back to A/E. I went back, I think this was an irritation to A/E. I spent the day at the hospital, IV fluids again, the hospital Diabetic nurse spoke to me. She prescribed gliclazide, and to get back in touch with the GP practice. Feeling tired.

 

[becca59]

Please please please insist on tests to rule out type 1. That is the absolute first thing they should do before experimenting with gliclazide. That will only delay the inevitable if you are type 1. Your health will suffer even more. Do not be fobbed off. Gps are notorious with assumptions that anyone older is automatically type 2. Include me in that category. I was admitted to Hospital, and luckily the on call consultant was my now consultant. The gods shone on me that day.

 

[Daibell]

I agree with @becca59. You should find that Gliclazide helps a lot in the short term and the max dose I was on is 320mg/day. Watch out for hypos depending on the dose and test before driving. It did eventually stop working. Note that many say that Gliclazide burns out the remaining beta cells so it's better to get onto insulin earlier rather than later. You may have to fight with the surgery. My diabetes GP refused me insulin as she said I was not T1 despite me struggling with BS and low-carb. My lovely DN did refer me for the two tests when I asked years later when that same GP had finally put me onto insulin. Even that was a struggle but I'm now in regular contact with my Endo who treats me as T1 despite my tests not quite proving T1.

 

[Rowgirl]

I agree with @becca59. You should find that Gliclazide helps a lot in the short term and the max dose I was on is 320mg/day. Watch out for hypos depending on the dose and test before driving. It did eventually stop working. Note that many say that Gliclazide burns out the remaining beta cells so it's better to get onto insulin earlier rather than later. You may have to fight with the surgery. My diabetes GP refused me insulin as she said I was not T1 despite me struggling with BS and low-carb. My lovely DN did refer me for the two tests when I asked years later when that same GP had finally put me onto insulin. Even that was a struggle but I'm now in regular contact with my Endo who treats me as T1 despite my tests not quite proving T1.

Thank you, how long does it take for gliclazide to work? It's having no effect yet. It's like a switch has turned off this week and my blood sugars are 18-20mmols.

 

[Rowgirl]

Please please please insist on tests to rule out type 1. That is the absolute first thing they should do before experimenting with gliclazide. That will only delay the inevitable if you are type 1. Your health will suffer even more. Do not be fobbed off. Gps are notorious with assumptions that anyone older is automatically type 2. Include me in that category. I was admitted to Hospital, and luckily the on call consultant was my now consultant. The gods shone on me that day.

Thank you, I will ask, I feel drained and worried.

 

[Rowgirl]

Thank you everyone. After a week of being bounced between the hospital and GP's surgery, with blood sugars continuously at 18-22mmols, losing a lb in weight a day and increasingly feeling unwell. I was started on insulin. So a new chapter and lots to figure out.

 

[Ronancastled]

Thank you everyone. After a week of being bounced between the hospital and GP's surgery, with blood sugars continuously at 18-22mmols, losing a lb in weight a day and increasingly feeling unwell. I was started on insulin. So a new chapter and lots to figure out.

That could be great news, finally some proper action.
I can never understand the medical professionals desire to throttle the pancreas to death before starting insulin.
I've seen Studies where insulin has been used cleverly at diagnosis to protect beta cell mass & remove them from glucotoxicity

 

[Rowgirl]

That could be great news, finally some proper action.
I can never understand the medical professionals desire to throttle the pancreas to death before starting insulin.
I've seen Studies where insulin has been used cleverly at diagnosis to protect beta cell mass & remove them from glucotoxicity

Thank you, I hope so. It was like a switch turned off last week and I stopped producing insulin. The young doctor yesterday, part of the endocrinology team was the first one who took seriously my weight loss, I was loosing a lb a day, 3 1/2 stone in total, I look dreadful, skeletal. I need to put on at least a stone to start looking healthy again. Today my blood sugars were under 10, first day in months.

 

[EllieM]

Thank you, I hope so. It was like a switch turned off last week and I stopped producing insulin. The young doctor yesterday, part of the endocrinology team was the first one who took seriously my weight loss, I was loosing a lb a day, 3 1/2 stone in total, I look dreadful, skeletal. I need to put on at least a stone to start looking healthy again. Today my blood sugars were under 10, first day in months.

Hopefully they have done the tests to see whether you qualify for an official T1 diagnosis (worth having in the UK because T1s are eligible for more diabetic goodies (pumps, cgms) than T2s). If lack of insulin was your issue, then insulin treatment should hopefully return your weight to normal quite quickly.

Please tell me you are getting adequate help with insulin dosing. Everyone needs different amounts, and it can be a bit of a process to work out how much each individual needs.

 

[Rowgirl]

Hopefully they have done the tests to see whether you qualify for an official T1 diagnosis (worth having in the UK because T1s are eligible for more diabetic goodies (pumps, cgms) than T2s). If lack of insulin was your issue, then insulin treatment should hopefully return your weight to normal quite quickly.

Please tell me you are getting adequate help with insulin dosing. Everyone needs different amounts, and it can be a bit of a process to work out how much each individual needs.

Hopefully i'll work it all out? The diabetic Nurse said i'd be getting more bloods done at the clinic.

 

[Ronancastled]

Hopefully i'll work it all out? The diabetic Nurse said i'd be getting more bloods done at the clinic.

Good, you've been proactive & I think you're getting to the bottom of this.
I know you're probably worrying about damage done in the meantime but remember that those with gestational diabetes aren't considered at enough risk even to be referred for retinal screening.
If it turns out to be T1 then at least you've got the diagnosis & know how to treat it.
You live in an age of CGMs, fast acting insulins & loop systems, the last decade alone has been transformative.
Good luck with your bloods.

 

[Rowgirl]

I've been on insulin for 6 days now. My blood sugars are more stable now. The hospital diabetic nurse has been in touch a couple of times, and the practice diabetic nurse. I spoke with a dietition, I think in my attempts to try and bring my blood sugars down I wasn't eating enough. I haven't heard from my GP? I'm not generally an anxious person but the last couple of weeks have made me anxious. Plus I keep thinking did I over react? Below is where I plotted my blood sugars on my fit bit. The first week is where I struggled and got bounced between the hospital and GP. The second is where I started insulin.

 

[EllieM]

Plus I keep thinking did I over react?

Not in my opinion, that's a very dramatic drop in bgs once you started insulin.
Two recommendations from me
1) As a new insulin user always take treatment for hypoglycemia with you. One of its symptoms is confusion so you want to make it easy for yourself to take sugar if you need it. (Bedside cabinet is a good location at night).
2) Make sure to keep chasing till you get those blood test results to know whether you have an official T1 diagnosis.

Good luck and welcome to the insulin users club.

(ps What kinds of insulin are you on at the moment?)

 

[Rowgirl]

Not in my opinion, that's a very dramatic drop in bgs once you started insulin.
Two recommendations from me
1) As a new insulin user always take treatment for hypoglycemia with you. One of its symptoms is confusion so you want to make it easy for yourself to take sugar if you need it. (Bedside cabinet is a good location at night).
2) Make sure to keep chasing till you get those blood test results to know whether you have an official T1 diagnosis.

Good luck and welcome to the insulin users club.

(ps What kinds of insulin are you on at the moment?)

Thank you, i'm on novo mix. I haven't had any bloods yet to identify which type of diabetes. I'm waiting on an appt to go to the diabetic nurse at the hospital, i'm going to write myself a list of questions so I don't forget anything! I'm eating better and actually slept better last night. My anxiety this morning is to check if my prescription has been done, I'll run out of insulin and needles this weekend.

 

[Hopeful34]

I don't think you over reacted at all. Glad you got started on insulin, and your numbers have dropped. It's no wonder you were feeling anxious with such high blood sugar, nothing working to lower it, and trips to A&E. Hope you get your prescription and appointment sorted out today, and can relax a bit. Take care.

 

[Rowgirl]

I don't think you over reacted at all. Glad you got started on insulin, and your numbers have dropped. It's no wonder you were feeling anxious with such high blood sugar, nothing working to lower it, and trips to A&E. Hope you get your prescription and appointment sorted out today, and can relax a bit. Take care.

Thank you. I got through to prescriptions at the gp, I just wish the receptionist was more empathetic. Anyway the information hadn't come through from the hospital, but insulin had been prescribed but not needles, Hopefully on the prescription now? She wanted me to chase the hospital, but I haven't got a clue who to chase, which I told her. As long as the medication is sorted for this weekend, i'm going to leave that til next week. Try and relax and breath. The past 2 weeks are a blur and I cann't remember it all.