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Could he have been misdiagnosed?

Kasef

Kasef

Member
Messages
9
Type of diabetes
Other
Treatment type
I do not have diabetes
Hi All

I am back again !! :)

I am just getting ready for yet another consultation with my hubby's GP. She was shocked to find that he had been diagnosed with type 1 diabetes at presentation to the hospital nurse specialist in 1999. At this time he had extreme thirst drinking up to 4 liters of fluid a day, thrush, keto acidosis which made the strip turn a very dark red as soon as it touched his pee and a blood reading off the monitor as it gave an error message twice. The GP records said he was type 2.

The back story to this is that the GP we see now is new, and has only been at the practice for 3 years. We went to see the endocrinologist around 4 years ago who tested my husbands Islets or something and said they suggested that he may not actually be a type 1 diabetic. We saw the GP nurse who looked at the letter and changed my husbands diagnosis to type 2, which I kind of overlooked as I thought the GP would still be able to get the notes from the hospital. Now they are treating him like "Oh you are a fat person it's your fault you have type 2 diabetes."

So my question is this. Have any diabetics who frequent this forum EVER been misdiagnosed as TYPE 1 when they are actually TYPE 2?

We have had so many problems with our local care that I am at my wits end and am compiling a folder of research and statistics.
 
I was diagnosed prediabetic and then T2!

But I'm not diabetic!

But most doctors and health care advocates, don't have a clue about my condition!

So it was quite understandable!
 
Kasef said:
So my question is this. Have any diabetics who frequent this forum EVER been misdiagnosed as TYPE 1 when they are actually TYPE 2?
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It is usually the other way round (T2 re-diagnosed as T1 when the T2 treatments fail after months or years of high blood glucose), but yes, there have been several people posted in this situation during my time on the forum.

And I am very, very sorry to say that the kind of 'fat bloke so it's your fault' thinking is pretty prevalent amongst the ignorant - even amongst health care professionals.

Do you have copies of the test results? You can get them from your GP. Just ring up and ask for them. Sometimes you might be asked to pay for the printing costs, but usually not. The same with the hospital. Once you have copies of the tests, you can ask here, or read online and actually see what is going on, and why your partner has ended up with an ambiguous diagnosis - and research what treatments are best for him!
 
This is the problem we are saving currently as we have "lots" of notes for him as he has "complex" needs, being diabetic, epileptic and bi-polar.

The notes from both will cost £50 which we just don't have at this time, despite being on benefits :/. I have however started to get prints every time he has tests as these are £1 each.

What has tipped me over the edge is about a fortnight back now we had a visit from the delivery guy with some new medication "Ramipril" which my husband has never taken. After phoning the doctors I found out they should not have been for my hubby but were mean't for someone else and it was the DOCTOR not the pharmacist that had sent it. I could add other mistakes here and shall we say "advice" that was given at inappropriate times along with episodes and diagnoses of his other Illnesses but it would turn into a "huge" wall of text.
 
Hi. It sounds like your surgery isn't the best. You can be late onset T1 without islet cell antibodies as things like viruses, pancreatitis and so on can result in cell death. Also doing the GAD antibody test a few years after diagnosis can give a negative whereas it would have been positive at diagnosis (I think that's my problem). The c-peptide test for insulin is pretty reliable and if it reads low then your husband is T1 regardless and should be treated as such. I'm afraid diabetes diagnosis and treatment within the NHS is a lottery. The important thing is the right diet and the right medication if needed to keep within NICE levels.
 
We recently changed his diet, in the past 2 weeks, as because he is "fat" we keep getting the standard you must eat this, this and this. Typical NHS style rubbish, but through his research and mine he is now on a low carb high fat diet, I must admit I did drop it drastically but he takes no more than 10 carbs at each meal, he still eats 4 meals a day when he is up to it. he weighed in at 191.1 kg at first weigh dropping to 184.6 kg 6 days later and it was weigh day yesterday which he weighed 182.6 kg. \o/ we may have actually found a diet that works not only for weight loss but his blood sugars are now more in line. We are talking around 7 before and after a meal with around 120 units of insulin still but we are still adjusting and trying to keep him in ketosis.

We are still waiting for the Nurse Specialist to come and see us and fully expect a lecture on "no carbs is a bad thing mmmkay" and the usual look.
 
I have to say that you have certainly taken you and yours 'care' into your own hands!

I have to stay in ketosis, with my GP and consultants approval!

It is not easy to start with, but with your determination, and the right food balance, you'll get there and by my own experience, it's great!

I am steadily losing weight and keeping healthier than I have been for decades!
 
Kasef said:
We recently changed his diet, in the past 2 weeks, as because he is "fat" we keep getting the standard you must eat this, this and this. Typical NHS style rubbish, but through his research and mine he is now on a low carb high fat diet, I must admit I did drop it drastically but he takes no more than 10 carbs at each meal, he still eats 4 meals a day when he is up to it. he weighed in at 191.1 kg at first weigh dropping to 184.6 kg 6 days later and it was weigh day yesterday which he weighed 182.6 kg. \o/ we may have actually found a diet that works not only for weight loss but his blood sugars are now more in line. We are talking around 7 before and after a meal with around 120 units of insulin still but we are still adjusting and trying to keep him in ketosis.

We are still waiting for the Nurse Specialist to come and see us and fully expect a lecture on "no carbs is a bad thing mmmkay" and the usual look.
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Hi. It looks almost certainly T2 and you appear to be doing all the right things. Keep at it with the diet and I would ignore any alternative 'have carbs' advice from the NHS. If your Hubby isn't already on Metformin then do discuss this with the GP as it can help with insulin resistance if overweight.
 
Kasef said:
We recently changed his diet, in the past 2 weeks, as because he is "fat" we keep getting the standard you must eat this, this and this. Typical NHS style rubbish, but through his research and mine he is now on a low carb high fat diet, I must admit I did drop it drastically but he takes no more than 10 carbs at each meal, he still eats 4 meals a day when he is up to it. he weighed in at 191.1 kg at first weigh dropping to 184.6 kg 6 days later and it was weigh day yesterday which he weighed 182.6 kg. \o/ we may have actually found a diet that works not only for weight loss but his blood sugars are now more in line. We are talking around 7 before and after a meal with around 120 units of insulin still but we are still adjusting and trying to keep him in ketosis.

We are still waiting for the Nurse Specialist to come and see us and fully expect a lecture on "no carbs is a bad thing mmmkay" and the usual look.
Click to expand...
Sounds as you two will sort it fine and I assume you have found the http://www.dietdoctor.com/low-carb site but if not I'll post the thread as I quite like Dr Eenfeldt.
 
Hi, sounds like you two are doing great! Has he been tested for sleep apnoea? (Sorry I can't remember if I have asked you this before or not).
 
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