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Dismayed!

cAlpha

cAlpha

Member
Messages
7
Location
Devon
Type of diabetes
Type 2
Treatment type
Pump
So I have moved from Buckinghamshire to Devon and have just come back from my first diabetic checkup.

I was diagnosed T1 diabetic in June 1996. I have been treating my diabetes with insulin, metformin(now glucophage). I have also been on ramipril, simvastin and aspirin since diagnosis. I have not had any heart problems, it was more precautionary.

I progressed from:
Mixtard 3x daily.
Glargine 1x Daily and Nvorapid 3x Daily.
Carb counting with Glargine and Novorapid many times daily.
Accu-chek Combo Pump with Novorapid.
Omnipod with Novorapid.
Omnipod with U500.

Pretty much told all this to the doctor. And he thinks I may have been misdiagnosed?!?!?!

I am probably not T1!?!?!?!?

Can anyone shed any light on this? As I say I am shocked! Is this possible? Is the doctor, safe to be diabetic specialist? Have I been taking drugs that I shouldn't have been taking for 20+ years?
 
cAlpha said:
So I have moved from Buckinghamshire to Devon and have just come back from my first diabetic checkup.

I was diagnosed T1 diabetic in June 1996. I have been treating my diabetes with insulin, metformin(now glucophage). I have also been on ramipril, simvastin and aspirin since diagnosis. I have not had any heart problems, it was more precautionary.

I progressed from:
Mixtard 3x daily.
Glargine 1x Daily and Nvorapid 3x Daily.
Carb counting with Glargine and Novorapid many times daily.
Accu-chek Combo Pump with Novorapid.
Omnipod with Novorapid.
Omnipod with U500.

Pretty much told all this to the doctor. And he thinks I may have been misdiagnosed?!?!?!

I am probably not T1!?!?!?!?

Can anyone shed any light on this? As I say I am shocked! Is this possible? Is the doctor, safe to be diabetic specialist? Have I been taking drugs that I shouldn't have been taking for 20+ years?
Click to expand...
Do you have any blood glucose/HBa1c etc history that you can post? As I understand it T1 is a complete collapse of the body's insulin production system, so you should have had some pretty scary blood test results until it was brought under control.
 
Today's doctor's conclusion seems rather odd.
Was he an endocrinologist or a GP?

It seems GPs have limited knowledge of diabetes. Even when they are the diabetes specialist at their surgery.
However, an endo specialises in this area.
If it was a GP, I would request an appointment with a specialist.
If he was an endo, I am dumbfounded.

Compared to most people I am aware of with type 1, you have been on a cocktail of drugs in addition to your insulin which also seems odd to me (a non-doctor who isn't qualified to comment). I am on Novorapid (through a pump) with no metformin, ramipril, simvastin or aspirin.
 
dawnmc said:
Did you ask you gp how they came to that conclusion?
Click to expand...

I don't know why he said it almost out of nowhere, and to be honest he could have said the earth is flat and the moon is made of cheese, nothing really went in after that!

This is supposed to be a diabetic specialist in a diabetic clinic at my hospital.
 
cAlpha said:
I don't know why he said it almost out of nowhere, and to be honest he could have said the earth is flat and the moon is made of cheese, nothing really went in after that!

This is supposed to be a diabetic specialist in a diabetic clinic at my hospital.
Click to expand...
You may well have been in shock, you do as you know need it clarifying.
 
I have been thinking back about the appointment; he said this after looking at my Omnipods' PDM. He was talking about my basal rate being rather flat and then said about not being type 1.

I fear he was looking at cost:

1. I am on a Omnipod pump system, which is expensive.
2. I am using U500 insulin (basically 5x strength), which is expensive and is imported from USA.

I have been put on U500 because I have high resistance to insulin: 2 carbs to 1 unit of insulin!
 
cAlpha said:
I can't remember what test they did back in 1996, I wish I could =( Back then everything was a blur of 30+ sugar readings, feeling ill and begging for help!
Click to expand...

It might be an idea to ask your GP if there are any records showing these tests and if there arn't then I would think it prudent to have them done. I realise that some tests can come back a little 'noisy' but it could clarify things a bit for you. I can't imagine how frustrating and worrying this must be for you. Big hugs.
 
So this endocrinologist told you he thought you maybe didn't have type1 but then failed to tell you why he thought so? Can you write them a letter to let them know this comment has left you very confused after being type1 for over 20 years and that you need more information from them?
 
Surely he could blood test you for antibodies? That would show whether or not you're type 1 - although even if you come back negative it doesn't mean your insulin requirements will change.
 
I know someone who,s husband had been told he was type1. This went on fer quite a few years then they moved to a different city and a different hospital. He was then told he in fact was type2. He is doing so much better now without insulin.
 
A full set bloods were taken. I have a huge bruise for my pleasure :mad:

I am going to speak to my GP on Monday, I will ask her if there are any records that indicate test results. Don’t even get me started on the trouble I have had getting the old GP practice to send my notes down. Thinking back my old GP never received any notes from my GP that I had when I was diagnosed. Lost in the post ☹️

I also have Macular Oedema in both eyes, and am now overdue treatment because my old GP hadn’t processed any requests from the new GP.
 
Just sending you three million hugs. Your treatment sounds like a nightmare. I think your doctor may think you're T2 because you're so insulin resistant. However, it's also possible you're T1 but have become insulin resistant, so are now exhibiting some T2 symptoms.... (Wild guessing going on here, by the way, as I don't know that much about T2).

Having said that, I suspect your oral drug treatment would have been much the same whether T1 or T2 - ie blood pressure and statins to prevent heart problems.

The issue is whether you'd have needed the insulin, I guess. I'm assuming that metformin on its own doesn't keep your blood sugar down....???

Good luck on Monday.
 
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