Changed diagnosis

[chris.tatt]

Hi All.

I was diagnosed 7 years ago with "unknown type" and then 5 years ago the specialsists gave up deciding and put me down as type2.

Been on metformin 2000mg daily, Pioglitazone and Glimepiride since then with very mixed results.

However......

Lately had BG rising to high 20's and ketones at +2.

Also changed GP and Consultant who have now "Re-diagnosed" as type1 and advised should have be diagnosed as T1 from outset "?!?!?!?

I have been advised to take legal action.... ideas?? :?

Anyway... just need BG sorting...

now on Insulin and NO tablets....

Humalog before each main meal 8-8-10 daily
Lantos before bed 14.

This is slowly being upped to balance BG.

Still getting as high as 25 in evenings.

Ketones have now reduced to 0.1


Anyone have any cooments re legal action regard to the misdiagnosis, should this be something to follow up?

Are the doses I am currently taking typical???????

Any further input ????

 

[daisy1]

Anyway... just need BG sorting...

Hi Chris and welcome to the forum
I can see you are not new to diabetes but all the same this is the advice we think can help people to get control of their diabetes when they have tried things but found it doesn't work. Many have used it as a basis and found after a few weeks it has helped lower Bg levels and also in some cases triggered weight loss. As you will see it doesn't follow the NHS/DUK dietary advice for the most part but it does work. Have a read....

Here is the advice we usually give to newly diagnosed diabetics. We hope that these few ideas gained through experience help you to gain control and give you some understanding of Diabetes. This forum doesn't always follow the recommended dietary advice, you have to work out what works for you as we are all different.

It's not just 'sugars' you need to avoid, diabetes is an inability to process glucose properly. Carbohydrate converts, in the body, to glucose. So it makes sense to reduce the amount of carbohydrate that you eat which includes sugars.

This is NOT a low carb diet suggestion, just a reduction in your intake of carbohydrate. You have to decide yourself how much of a reduction will keep your blood glucose levels in control.

The main carbs to avoid OR reduce are the complex or starchy carbohydrates such as bread, potatoes, pasta, rice, starchy root veg and also any flour based products. The starchy carbs all convert 100% to glucose in the body and raise the blood sugar levels significantly.

If you are on Insulin you may find that reducing the carb intake also means that you can reduce your dose of insulin. This can help you to keep weight gain down as Insulin tends to make you put on weight and eventually cause insulin resistance. This should be done slowly so as not to cause hypos.

The way to find out how different foods affect you is to do regular daily testing and keep a food diary for a couple of weeks. If you test just before eating, then two hours after eating, you will see the effect of certain foods on your blood glucose levels. Some foods, which are slow acting carbohydrates, are absorbed more slowly so you may need to test three or even four hours later to see the effect that these have on your blood glucose levels.

Buy yourself a carb counter book (you can get these on-line) and you will be able to work out how much carbs you are eating, when you test, the reading two hours after should be roughly the same as the before eating reading, if it is then that meal was fine, if it isn’t then you need to check what you have eaten and think about reducing the portion size of carbs.

When you are buying products check the total carbohydrate content, this includes the sugar content. Do not just go by the amount of sugar on the packaging as this is misleading to a diabetic.


As for a tester, try asking the nurse/doctor and explain that you want to be proactive in managing your own diabetes and therefore need to test so that you can see just how foods affect your blood sugar levels. Hopefully this will work ! Sometimes they are not keen to give Type 2’s the strips on prescription, (in the UK) but you can but try!!

If you are an Insulin user in theory you should have no problem getting test strips.

The latest 2010 NICE guidelines for Bg levels are as follows:
Fasting (waking).......between 4 - 7 mmol/l........(Type 1 & 2)
2 hrs after meals......no more than 8.5 mmol/l.....( Type 2)

2hrs after meals....... no more than 9 mmol/l ......(Type 1)

If you are able to keep the post meal numbers lower, so much the better.

It also helps if you can do 30 minutes moderate exercise a day. It doesn't have to be strenuous.

The above is just general advice and it is recommended that you discuss with your HCP before making any changes. You can also ask questions on the forum on anything that is not clear.

Sue/Ken.

As for your legal and dosage questions, some members who are knowledgeable on these subjects will be along soon to help you.

 

[phoenix]

Welcome, i'm glad that you are now on the right treatment for you. Given time I'm sure that you will be able to gain better control. At the moment it is clear that you are on fixed doses of insulin.
Unless you eat the same amount of carbs at each meal then it will be difficult to control your glucose levels with any degree of accuracy. It is early days yet but learning to count your carbohydrates and adjust your dose according to what you are going to eat in that meal can be much more effective.
There are 2 books that can help with this
Using Insulin John Walsh
Think Like a pancreas Gary Scheiner.
Later you might find it valuable to do a course
There is a very good course available in some areas of the UK called DAFNE (dose adjustment for normal eating)
and an online version
http://www.bdec-e-learning.com/

Hindsight is a wonderful thing, why I wonder did your doctor say that?
The fact your diabetes was able to be managed to a degree with oral medications for seven years and you don't mention DKA or ketosis at diagnosis suggests that you may have LADA (latent autoimmune diabetes in adulthood) which is a subset of t1. LADA, though named in the nineties had very little written about it until recently. Even today when it's clear that 10% or more of T2s are probably misdiagnosed, many doctors, expecially GPS aren't aware of it.
One third of people diagnosed with T1 in Australia were initially diagnosed as T2, and this included those who were relatively young and had an unmistakable rapid onset.There is also a multi page thread going on, on one of the American Diabetes forums with many, many stories of people initially diagnosed as T2 who eventually were found to have LADA..
There are tests that can aid diagnosis. A C peptide test is likely to show elevated levels in a fairly recent T2 and low normal ones in the early stages of LADA. There may be antibodies (particularly antiGAD, but sometimes others) present. A large number will indicate an early necessity for insulin, but people caught early may have only small numbers...as may some T2s and people without diabetes at all.
There are some authorities who are suggesting that these tests are used on all people who don't fit into a T2 profile and certainly if they find that oral drugs are not working and the person has continued high glucose levels and is losing weight.
At present anti GAD testing is not routinely available in the UK. though as you were type 'unknown' and seemingly under a specialist rather than a GP it does seem odd that you were not tested sooner.
if you never had ketosis there was always the possibility of a genetic type of diabetes called MODY, people with this would not have antibodies (and are not T1 or T2) You are even less likely to be tested for this as it involves expensive genetic testing and the tests are only available at a research centre in the UK .

I'm not a lawyer and that's where you need to go for legal advice but given that diabetes "pigeon holes" are not clear cut; the researchers argue between themselves on precise definitons and are still researching the best means of diagnosis and early treatment (there is ongoing research in the uK into how to define and diagnose LADA but this started well after your initial diagnosis) . I doubt you'll get far. Even in the US, I've heard of lots of stories of misdiagnosis, but I have never heard of anyone even attempting to sue.

 

[sugar2]

I am not a lawyer either, but I would ask "what suffereing has it caused you, being misdiagnosed?" I am sure that it is quite a long list, but I also wonder whether the correct diagnosis would have changed this list all that much? as you are finding, correctly diagnosed type 1s still suffer high BGs at times.

My own opinion is that people should not sue the NHS unless they need to, to be able to continuw with their lives eg people who were so badly treated at birth, that the bad treatment led them to need ongoing care for the rest of their lives...but if the only reason you are thinking of suing is because the new GP suggested that it would be possible, then I wouldn't. The NHS is cash starved enough. My opinion only though, and I do not know how/if you have suffered because of this misdiagnosis.


thsi site is a great place to find out lots of information, so that you can help yourself to manage your diabetes. Best of luck.