Still unsure on diagnosis... surley theres an easier soloution

[Sammi87]

So those who have followed me since my diagnosis in june are aware of the struggles i have faced due to c**p care basically. I was diagnosed type 1 then changed to type 2 yet i have been on insulin since day dot basically they took me off it when the diagnosis changed and i ended up in hospital with suspected Ketonosis twice. I am now on 27 units humalog mix 25 am and 29 pm and 2000mg metformin and stigiptin 100mg daily? All of this just to get my sugars to a normal level and now im suffering from hypos on occassions. I work long 12 hour shifts that are hectic and stressful so no i cant always eat regularly. My sugars will generally be in the high 20s to 30s with just the insulin and metformin alone so the stigiptin was introduced at 50mg now 100mg is this definatley type 2? I always assumed that would be a gradual thing with type 2 yet i have been on it since being diagnosed with roughly a months break.

 

[Diabetes UK]

Hi Sammi, sorry to hear that you are still having so many difficulties with your health care team and your bg levels after all this time. How long have your levels been running in the 20s and 30s? With levels this high, it sounds like there really needs to be a review from your GP/DSN?
You are not the first person on this forum to experience confusion around diagnosis of type and I am sure some other members on here can empathise with your struggles. It is concerning though that your levels are consistently so high - and with two hospital visits from high ketones, you have not had in increase in insulin dosage. How have you levels been over the past few months?

 

[Sammi87]

My levels have been high pretty much the entire time i have been diagnosed. My insulin has been upped so many times. Started on 10 units am and 12 units pm. They sorted themselves out for a while then began to creep up again. I have had multiple abcesses too one of which required an overnight stay in hospital iv antibiotics and surgury.

 

[Sammi87]

Each time my meds change they settle for a while then go back up so insulins upped metaformin upped and now the stigiptin upped. It has now began to go down again but i wouldnt say it was controlled as now if i dont eat i have a hypo and when i do it goes up high again. Even with watching my diet. I have lost 3 stone since june due to the ketones.

 

[mikeyB]

You’re in a position I got rapidly into when diagnosed. No matter what I ate, I spiked, and never got a decent ‘resting’ level. When I went to see the consultant, he didn’t mess about, he just said “That's because you’re Type 1”. It took a slightly shorter time for that than you’re experiencing.

You’ve lost three stones in weight and recurrent ketones. It’s bleeding obvious you’re Type 1. You need to stop whacking your defunct pancreas with more drugs, and just get on a proper clean MDI regime, the sooner the better. You’ll start feeling well as soon as you do.

 

[Sammi87]

I dont seem to get anywhere though i was seeing a dibaetic nurse who was awful finally got to see a gp who specialised in diabetes and though ah ha im getting somewhere said needed to see me straight away to resolve my problems and i just ended up with more insulin and more stigiptin i dont wanna be taking all these drugs constantly. Its the typical i was 29, overweight no family history etc when first showing symptoms so they put me on insulin then decided i was type 2 so took me off and gave me metaformin. Thing is id never had symptoms in my life and then within a week i was crashing urinating frequently, fatigue, glucose in urine and a base rate of 17.9 i may be wrong but i always pressumed type 2 was a slow process and that my transition to insulin would be a while off. One dr said im now dependent on insulin as i was put on it too soon and then taken off causing my body to go into shock as it were. But i dont get how that would then encourage my pancreas to stick its middle finger up at me lol

 

[Amity Island]

Hi Sammi, I don't know your circumstances, but would seeing a private diabetes consultant be a way forward? You can look up online any specialist in your area who work privately, a private hospital like Spirehealthcare, they have lots of consultants in diabetes. It's about £200 for a half hour consultation. Once you have found a consultant, see your g.p. and say you want to see a private consultant and you have all their details at hand. Should then only take a few days to see the private consultant. It's just a diagnoses you are seeking not treatment, treatment is free on the NHS.

 

[Wirrallass]

Hi Sammi ~ if you do consult a private Consultant, go well prepared. Take all your notes with you to refer to. ie.

1. Medications you're taking
2. Insulin doses & when
3. Blood glucose levels and dates
4. Dates ~ when and why you were admitted to hospital
......and anything else you feel necessary to include in your discussion with the Consultant.

As I recall, you've been down this road before Sammi so you know the procedure. I understand how worrying it is for you but it's high and mighty time you had your Diabetes diagnosis confirmed for good so you can manage it and get on with your life. You cannot carry on like you are. Good luck with whatever you decide to do. x
WL

 

[Sammi87]

Sadly that is no an option do not have that sort of money avaliable to me x

 

[everydayupsanddowns]

Have you asked about a GAD antibody and cPeptide test to confirm your diagnosis?

 

[trophywench]

Would help if the person who decided on mixed insulin for a person who works shifts and doesn't eat regularly, had a brain really, I expect .....

 

[HOBIE]

What sort of things are you eating ? Low carbs are better. Good luck 🙂

 

[Amity Island]

Hi Sammi ~ if you do consult a private Consultant, go well prepared. Take all your notes with you to refer to. ie.

1. Medications you're taking
2. Insulin doses & when
3. Blood glucose levels and dates
4. Dates ~ when and why you were admitted to hospital
......and anything else you feel necessary to include in your discussion with the Consultant.

As I recall, you've been down this road before Sammi so you know the procedure. I understand how worrying it is for you but it's high and mighty time you had your Diabetes diagnosis confirmed for good so you can manage it and get on with your life. You cannot carry on like you are. Good luck with whatever you decide to do. x
WL

Hey, I did just that last year, got everything written down, to ensure the entire consultation time wasn't spent just trying to remember everything.🙂 Good advice!

 

[TheClockworkDodo]

Taking all the info with you is good advice for seeing an NHS consultant or DSN, not just for seeing a private one. I take a folder with me to all appointments now, so I have everything at my fingertips, whatever they ask I can find the answer. I also take a list of all the things I want to ask them, and take notes of what they say in reply.

But frankly, if I had readings over 20 for more than 24 hours and I was unable to get them down with the meds I had, I'd go and camp in A&E until they sorted it out. Ongoing readings that high are either likely to lead to complications in the long-term or to a diabetic coma in the short-term, possibly both, and it's appalling that no-one has helped you get them down by now. Please, if you can't get help from the surgery and hospital where you've been treated so far, try another one, even if it means travelling a bit further. It really can't wait until your current team get their act together.

 

[DaveB]

You’re in a position I got rapidly into when diagnosed. No matter what I ate, I spiked, and never got a decent ‘resting’ level. When I went to see the consultant, he didn’t mess about, he just said “That's because you’re Type 1”. It took a slightly shorter time for that than you’re experiencing.

You’ve lost three stones in weight and recurrent ketones. It’s bleeding obvious you’re Type 1. You need to stop whacking your defunct pancreas with more drugs, and just get on a proper clean MDI regime, the sooner the better. You’ll start feeling well as soon as you do.

I agree. At those BS levels you will be T1 and therefore the normal treatment will be MDI insulin (not mixed) and not Sitagliptin. Metformin is OK with insulin and helps just a little. You need a serious talk with the GP or asked to be referred to the clinic. It is not normal to up Sitagliptin when on insulin as insulin does the right job anyway as long as it's MDI. Mixed insulin is no longer recommended for newly diagnosed T1s (see NICE Guidelines for T1). Once on a balanced dose of MDI you will should be fine.

 

[Sammi87]

Thank you all for your advice as always i find this is the best place to come. I had a GAD antibodies test yet had mixed answers about that at first **** nurse said none so type 2, other nurse said there are antibodies but its more likely type 2, dr then said could go either way but leaning more towards a conplicated form of type 2. Nobody seems to know. Yes i agree a simpler treatment plan would be better. Taking all these meds daily just seems ridiculous. I asked to be referred and was told by **** nurse im too fat and need to lose weight before hand. Current doctor said the wait is too long and i need to be sorted sooner and upped my insulin and stigagliptin. Too many cheifs and not enough indians really.

 

[Drummer]

Do not suffer in silence - keep phoning anyone you can think of to report what is happening to you - tell them you need help and don't accept 'oh you have to wait until there is an appointment' if you need to get something sorted.
My brother in law's best mate - best man at their wedding found out fairly recently, from an urgent phone call when his consultant retired, that he'd been wrongly diagnosed type one and he should stop taking insulin at once - this after countless hypos needing an ambulance, losing his job, his home and his family. I don't know what the actual diagnosis is - if there even is one, but he is a quiet sort who just obeyed what he was told to do with disastrous results.

 

[Wirrallass]

Thank you all for your advice as always i find this is the best place to come. I had a GAD antibodies test yet had mixed answers about that at first **** nurse said none so type 2, other nurse said there are antibodies but its more likely type 2, dr then said could go either way but leaning more towards a conplicated form of type 2. Nobody seems to know. Yes i agree a simpler treatment plan would be better. Taking all these meds daily just seems ridiculous. I asked to be referred and was told by **** nurse im too fat and need to lose weight before hand. Current doctor said the wait is too long and i need to be sorted sooner and upped my insulin and stigagliptin. Too many cheifs and not enough indians really.

Yes I agree Sammi, too many cooks in the kitchen ~ not the solution you want or need. If your current GP says the wait is too long then it's up to him/her to get the ball rolling for you and make that referral NOW. Have you spoken with Diabetes.org.uk Helpline? It would be worth ringing them for advice. I'm sorry I don't know the link or telephone number but @Northerner or @Hannah DUK will be able to help you in this respect. Stay in touch Sammi. x

 

[mikeyB]

Sounds like the doc is a bit more on the ball than the rest of the crew, Sami. Pester him for a quick referral to a diabetes specialist. The nurse is talking b******t. You don’t need to lose weight before referral, it’s not a fashion show, it’s your future health.

 

[Amberzak]

I’m going to say this again. I was fat when I was diagnosed with type one. Admittedly I was diagnosed in hospital and never saw the gp nurse. There was one gp doctor who briefly suggested I could be type two but the diabetic nurse squashed that right away. I was very lucky to have a good nurse.

But my point is that being fat doesn’t mean you don’t have type one. Just like it’s a misconception that type two is always just about lifestyle, it’s also a misconception that all type ones are stick thin.