Type 1.5 what do i do now

[sharron 64]

I was diagnosed 3 years ago. I have graves disease which is an autoimmune disease which has already killed of my thyroid. I have had the GAD 65 test, and when i went for the results i was told i was type 1, i said i was not and to re check their records and came back and said no your not type 1 but that funny one type 1.5. I was sent to the type 2 clinic, where blood was taken once a year feet checked, whee they said i had lost some feeling in my feet, and i told them about the spot light pains i get in feet and legs, i was told it was nothing to do with the diabetes as i was only diagnosed the year before. Fast forwarding my feet and legs are so painful i was sent to an orthopedic specialist whom after x rays asking about the pain started to rant on about the diabetic clinic and why was i been treated as a type 2 when i have an autoimmune disease, then informed me my problems are diabetic complications, he is going to write to the consultant at the diabetic hospital, in the mean time i go to se my doctor whom told me i should have never been sent to her clinic as i am not type 2 however she says your not type 1 either, the doctor is also sending a letter to the hospital telling them her clinic does not know enough about my type of diabetes which they have on record as unusual type 2 with slow onset. My doctor said i need medication and is going to leave that up to the hospital.
I an seriously angry, as i now have terrific pains in both feet and legs, which could have been avoided if my type of diabetes was treated or atleast kept a closer eye on.

When first diagnosed i did asked the consultant what type they have me down as, she said it does not matter if your type1 or 2 as we dont put types 1 on insulin at the start anyway. I was given to advice, like diet or what ever advice other diabetics are given. I am very slim, and do not eat bread crispt drink any type of juice, and intend to make every dinner from scratch. I was given a monitor and get my strips on prescription also i got ketone strips to test my urine. My glucose levels are still not too high, they average between 10 mmol and 19.4, first thing in the morning they are about 7.
Can someone please tell me what i need to do to get someone to take my diabetes as serious cause i find if your not type 1 or 2 then tough.

 

[cezli84]

So sorry you have been treated so poorly. What area do u live? Im in wales. When i was diagnosed, they first diagnosed, they said i was T2 but within 2weeks i got even more poorly and re-admitted to hosp and they said it was probable i was T1. For them to tell u they dont start T1 on insulin straight away is not normal as even tho my docs werent 100% sure i was T1 they still started me on it as a precaution as the metformin did nothing to help me. I was on it for several wks when my first hb test came bk an confirmed i was T1. As ive only had it for 9 months, i dont know much bout the other auto immune diabetes im affraid but there are many ppl on here that im sure will help you with the questions an direction you should take. Chin up xx

 

[Clivethedrive]

I was diagnosed 3 years ago. I have graves disease which is an autoimmune disease which has already killed of my thyroid. I have had the GAD 65 test, and when i went for the results i was told i was type 1, i said i was not and to re check their records and came back and said no your not type 1 but that funny one type 1.5. I was sent to the type 2 clinic, where blood was taken once a year feet checked, whee they said i had lost some feeling in my feet, and i told them about the spot light pains i get in feet and legs, i was told it was nothing to do with the diabetes as i was only diagnosed the year before. Fast forwarding my feet and legs are so painful i was sent to an orthopedic specialist whom after x rays asking about the pain started to rant on about the diabetic clinic and why was i been treated as a type 2 when i have an autoimmune disease, then informed me my problems are diabetic complications, he is going to write to the consultant at the diabetic hospital, in the mean time i go to se my doctor whom told me i should have never been sent to her clinic as i am not type 2 however she says your not type 1 either, the doctor is also sending a letter to the hospital telling them her clinic does not know enough about my type of diabetes which they have on record as unusual type 2 with slow onset. My doctor said i need medication and is going to leave that up to the hospital.
I an seriously angry, as i now have terrific pains in both feet and legs, which could have been avoided if my type of diabetes was treated or atleast kept a closer eye on.

When first diagnosed i did asked the consultant what type they have me down as, she said it does not matter if your type1 or 2 as we dont put types 1 on insulin at the start anyway. I was given to advice, like diet or what ever advice other diabetics are given. I am very slim, and do not eat bread crispt drink any type of juice, and intend to make every dinner from scratch. I was given a monitor and get my strips on prescription also i got ketone strips to test my urine. My glucose levels are still not too high, they average between 10 mmol and 19.4, first thing in the morning they are about 7.
Can someone please tell me what i need to do to get someone to take my diabetes as serious cause i find if your not type 1 or 2 then tough.

I will ask
@daisy1 for the info pack for you

 

[TorqPenderloin]

Sharron, I'm sorry you are having complications and it's sad to hear you aren't receiving proper care.

Please understand that I mean well in what I'm about to say, but it may not be what you're looking to hear.

19.4 mmol/l is ridiculously high and even 10 is unacceptable. It may not put you in the hospital immediately, but at those levels you will almost surely develop more serious complications over time.

To answer your questions bout what you need to do: YOU need to start taking action and YOU need to do your research in order to decide what is best for your body. I know it's maddening to feel like no one cares about you, but that's why you need to be the one directing the situation, not your doctors.

In my opinion, "Type 1.5" is a ridiculous term exactly because of situations like yours. Its basically adult-onset type 1 diabetes characterized by an extended honeymoon period (the time when your pancreas still makes some insulin). As far as I'm aware there are no medical standards for deciphering T1 from T1.5 and nearly every T1.5 becomes a T1 eventually.

At this point you need to either request new doctors or demand that your current ones start addressing the situation. You need to schedule appointments as soon as possible and your first topic of discussion should be about starting insulin therapy.

Treat this forum as your most valuable resource. Do your own research, read old posts about other people in similar situations, decide what is best for you, and then take that information to your healthcare team and demand that something gets done.

 

[Daibell]

Hi and welcome. It sounds like you have been dealing with some ignorant medics. T1.5 is Late onset T1 and is essentially T1 but comes on later in life and often more slowly. It's diagnosis is often missed and labelled T2. If it comes on slowly as mine did then tablets will work for a while and then insulin will be needed. Any HBa1C that goes into the 7% area starts to become a candidate for insulin. Mine rose rapidly to 8.3% before I started insulin (too late). If your meter reading often goes into the teens then beware. If it goes into the 20s other than occasionally when on tablets then the time for insulin has certainly now arrived. My diabetes GPs were fairly clueless and I had to take control. They refused to accept I wasn't T2 (I'm still listed wrongly as T2) and initially refused me insulin until the HBa1C of 8.3%. My GP asked me why my HBa1C had rocketed up; I resisted the temptation to tell her again that I was T1.5 and it should have been expected. So much professional ignorance around, so take control.

 

[sharron 64]

Hi and welcome. It sounds like you have been dealing with some ignorant medics. T1.5 is Late onset T1 and is essentially T1 but comes on later in life and often more slowly. It's diagnosis is often missed and labelled T2. If it comes on slowly as mine did then tablets will work for a while and then insulin will be needed. Any HBa1C that goes into the 7% area starts to become a candidate for insulin. Mine rose rapidly to 8.3% before I started insulin (too late). If your meter reading often goes into the teens then beware. If it goes into the 20s other than occasionally when on tablets then the time for insulin has certainly now arrived. My diabetes GPs were fairly clueless and I had to take control. They refused to accept I wasn't T2 (I'm still listed wrongly as T2) and initially refused me insulin until the HBa1C of 8.3%. My GP asked me why my HBa1C had rocketed up; I resisted the temptation to tell her again that I was T1.5 and it should have been expected. So much professional ignorance around, so take control.

Sharron, I'm sorry you are having complications and it's sad to hear you aren't receiving proper care.

Please understand that I mean well in what I'm about to say, but it may not be what you're looking to hear.

19.4 mmol/l is ridiculously high and even 10 is unacceptable. It may not put you in the hospital immediately, but at those levels you will almost surely develop more serious complications over time.

To answer your questions bout what you need to do: YOU need to start taking action and YOU need to do your research in order to decide what is best for your body. I know it's maddening to feel like no one cares about you, but that's why you need to be the one directing the situation, not your doctors.

In my opinion, "Type 1.5" is a ridiculous term exactly because of situations like yours. Its basically adult-onset type 1 diabetes characterized by an extended honeymoon period (the time when your pancreas still makes some insulin). As far as I'm aware there are no medical standards for deciphering T1 from T1.5 and nearly every T1.5 becomes a T1 eventually.

At this point you need to either request new doctors or demand that your current ones start addressing the situation. You need to schedule appointments as soon as possible and your first topic of discussion should be about starting insulin therapy.

Treat this forum as your most valuable resource. Do your own research, read old posts about other people in similar situations, decide what is best for you, and then take that information to your healthcare team and demand that something gets done.

Hi, Thank you for your reply. I was at hospital today for a different reason however i need surgery but can have it until suger levels are level. So i went round to diabetic hospital that deals with type 1 and where i was treated for the 1st year i was diagnosed, then sent to type 2 clinic. I have already been told that the type 2 clinic will not treat me as i am not type 2, now the type 1 hospital have also said they will not treat me, as my hbcla results came back in Jan and was 49 or 6.6% they said they do not count everyday blood testing levels. I have now to go back to see my doctor, the same doctor that told me she was no longer going to treat me. I really do not know what to do? do i ask the doctor for insulin, as i need a quick fix so i can get the surgery that i need asap as i have a prolapse.