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Ayrton41

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Type 2
Hi all im a newbie here but not to DB2 unfortunately, was diagnosed in about 2012 while undergoing examinations to find what cancer i had, (Lymphoma).
Anyway i have a big problem now with my blood sugar levels staying high all the time regardless regardless of diet and the medication i take.
ATM i'm on the max of Gliclazide 4 x 80mg a day with also taking 45mg of pioglitazone daily.
I have a problem with my BS always being about 15 and have even seen it rise after taking my medication and not eating or drinking anything at all.
I have told this to my doctor who just tells me to watch my diet to which my answer is this,,, i'm 5"8 and weigh 9 stone, only eat twice a day and follow a card counting diet at all times.
Exercise is difficult for me because of my tumour hence the 9st weight as all muscle definition has gone,, i do walk a bit at work though and am always taking on water. I am at my whits end trying to get my bloods back in range between 4 and 9, does anyone have any ideas why its staying high please ??
 
Ayrton41 said:
Hi all im a newbie here but not to DB2 unfortunately, was diagnosed in about 2012 while undergoing examinations to find what cancer i had, (Lymphoma).
Anyway i have a big problem now with my blood sugar levels staying high all the time regardless regardless of diet and the medication i take.
ATM i'm on the max of Gliclazide 4 x 80mg a day with also taking 45mg of pioglitazone daily.
I have a problem with my BS always being about 15 and have even seen it rise after taking my medication and not eating or drinking anything at all.
I have told this to my doctor who just tells me to watch my diet to which my answer is this,,, i'm 5"8 and weigh 9 stone, only eat twice a day and follow a card counting diet at all times.
Exercise is difficult for me because of my tumour hence the 9st weight as all muscle definition has gone,, i do walk a bit at work though and am always taking on water. I am at my whits end trying to get my bloods back in range between 4 and 9, does anyone have any ideas why its staying high please ??
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Hi what was your last HBA1C result? I was misdiagnosed T2 4 years ago and my glucose was high for years and medication just didn’t work. You name it I was on it. Anyway I was diagnosed in December T1. They just presumed I was T2 as I was overweight. My HBA1c has now came down to 51 since starting insulin from levels of 128. I would suggest you are referred to the Diabetes team as something just isn’t right. Wishing you well.
 
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Really sorry to hear you have an unsupportive GP. Is it possible to get a second opinion at your surgery or ask to be referred to a specialist diabetes clinic because clearly the current and quite significant treatment is not working. Like @MichelleF78 above, I suspect that you are a slow onset Type 1 often referred to as Latent Autoimmune Diabetes in Adults or LADA and if that is the case you need insulin. Do you have a means of testing for ketones? Usually that would be a pot of Ketostix which you dip in your urine. Ketones can develop with a low carb diet because the body starts burning fat instead of carbs, but when you run out of insulin, your body also produces ketones because it has to start running off your own body stores plus whatever fats you eat. Ketones themselves are not a problem, but combined with high BG levels which cause the blood to become acidic, the ketones then become toxic and lead to Diabetic KetoAcidosis (DKA) which is very serious and potentially life threatening, so please do make sure you have some Ketostix to test for ketones when your BG levels are persistently mid teens or above. You can buy them over the counter at a pharmacy or online for about £5 if your GP hasn't prescribed them and if your ketone levels go above 2 seek medical help urgently. Similarly if you get abdominal pain or nausea/vomiting or respiratory distress or your breath smells of pear drops, get to A&E pronto.

Please push for an urgent referral to a clinic though as these high levels pose a serious risk to your health and your GP is letting you down by not getting you the support you need. Unfortunately in this current climate you have to be politely pushy to get the treatment you need. If necessary ask for insulin. A clinic can do tests which will show how much insulin you are able to produce yourself and thy can also test for the antibodies which are produced when the immune system attacks the Beta cells which produce insulin in the pancreas. In your situation with a history of cancer, I would also want a scan of my pancreas, in case it isn't autoimmune but a cyst or tumour in your pancreas. We have quite a few members here who have had to have their pancreas removed or part of it due to cysts or tumours or damage from disease and they are referred to as Type 3c diabetics. I don't want to alarm you, but knowledge is power, so hopefully if you can go to your GP oir ideally another GP armed with more knowledge it will perhaps make them realise that they don't know enough and you need specialist help. Ask them why they think you are Type 2 and have they considered you might be a slow onset Type 1 or Type 3c and if you are then your life is potentially in danger. You don't fit the profile of Type 2 and the Type 2 medication is not working and you are doing your utmost with your diet, so that suggests you are not Type 2.

I wish you lots of luck in getting this situation resolved and if you get nowhere with your GP or any other GP at the practice then maybe write a letter of complaint to the practice manager and continue to push for a referral or if you can afford to, perhaps go to a private consultant. I know none of this is easy and I do understand that GPs are under a lot of pressure but this is your long term and short term health which is at risk.

Let us know how you get on and if you have any questions please ask.
 
Excellent advice @rebrascora has given you. At 44 I was told they had misdiagnosed me. Believe me when I say I thought my world had ended but you need to action this fast. I am very fortunate that my practice nurse knew something wasn’t right. I was on every type of T2 medication you can think of and nothing worked. I had every symptom of T1. The aim is to get healthier and I think you need insulin to control your BG. Let us know how you get on but please FIGHT to get seen by diabetes team.
 
Sorry to read of the rough ride that you have had @Ayrton41
I am another suggesting that you may well be T1, so needing insulin, as you clearly don’t have enough insulin on board. The weight loss is also an indication of this.
Do chase and see if you can get an urgent referral to specialists.
In the mean time do check for ketones, and if those are above 2 you need to get urgent treatment so go to an A&E.
keep in touch and let us know how you get on.
 
Hi Ayrton41,

Just wanted to pop in and welcome you to the forum. Really sorry to hear of the health challenges you've experienced.

Some really helpful advice above, I too would suggest an urgent review with the doctor as what you're experiencing isn't typical for a type 2 and so you'll need to correct medicine as soon as possible.

It can be difficult to advocate for ourselves when doctors are dismissive but I'd go as far as changing docs if not heard or at the very least ask for a referral to a specialist.

You're welcome to call our helpline on 0345 123 2399 for some additional support if needed. Either way, do let us know how you get on.
 
Hi all, thank you for the reply s and the kind words i appreciate it.
I have pushed my doctor to refer me to the Diabetes clinic where i live which they begrudgingly have now, a friend/doctor told me surgery's do not like to refer now as the government have set it up so surgery's get charges/ loss of revenues for each referral.
Just to clarify a couple of points with whats going on with me atm, my weight loss is due to the cancer i have not the DB,,, i have lymphoma which unfortunately stops me from exercising or doing anything strenuous as i run out of energy and my tumours start to give very bad pain, they tumours also press on my verve which gives pain too.
I am stable at 9st at all times now but it sometimes drops if i catch any infections etc,I have ordered some urine test strips as recommended and will have a google on how to use them and what to look out for,, thanks again 🙂

regards to all and thanks.
 
Secondary care for their patients comes out of GP budgets as I understand it, yes, but in the long term it will almost certainly cost them less to have promptly referred you to a specialist clinic, as the cost of treating the complications that you could get if your diabetes isn't treated properly would be much higher. Even if it wasn't financially in their interest, you don't need to worry about that, as an individual you have every right to push for appropriate care
 
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