Possible 1.5, need help!

[nymple]

Hi folks,

I was diagnosed with type 2 in June last year aged 30 after a visit to the doctor for something unrelated. Since then I have been reading up and am not convinced the type is right. I have no family history of diabetes of any kind. Also although I'm overweight my doctor said that she was surprised as I wasn't heavy enough to get it at my age really. Finally, I was diagnosed 6 months after taking roaccutane which I have subsequently found out, can cause diabetes... Type 1 diabetes, often years after the roaccutane treatment was given. Which leads me to believe that it generally causes type 1.5 with some people not realising until it had developed into T1 proper.

My doctor is pretty good (gave me strips on repeat despite T2 diagnosis as I said eating to my metre was helping) which I believe is a rarity. One other thing I like about her is that she doesn't act like she is all-knowing and admits if she is unsure. So I took this information to her and she agreed that type 1.5 could very well be a possibility however then she admitted to having no idea how to order the test to find out for me although she was happy to do so. She suggested I ring the diabetic nurse to find out but can I get hold of her... No! I keep ringing and leaving messages but no call back. I know she is busy and out in the community but it's frustrating!

I was wondering if anyone had info for the doctor on how to order the test? Do I have to be referred to the hospital? I'm seeing her tomorrow for something unrelated so would really like to get the ball rolling rather than waiting for my dn appointment at the end of the month.

I know it doesn't matter for now as I've managed to get it under control so my treatment wouldn't change but personally I would like to know for sure which type I am. Partially so that if my hard won control suddenly disappears, I know the cause and don't delay heading to the doctor. Partially because of other medical professionals attitudes. If I'm put under the T2 header and yet am not a T2 I don't want to have to fight with future doctors for the correct care. Given my current doctor this may seem alarmist but well, things change.

Any advice or help is much appreciated!


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[kesun]

Hi Nymple,

My GP referred me to a hospital consultant, who seemed very much influenced by the researchers at Exeter University Medical School. He ordered blood tests for various types of monogenic diabetes, which were processed at Exeter. Your GP could probably do it herself. Point her to the Exeter research at http://www.diabetesgenes.org/ and see what she thinks.

Kate

 

[xyzzy]

Hmmm your doctor just needs to order c-peptide and GAD tests for you. I'd be a bit concerned that my GP either doesn't know this or worse how to order the tests from the hospital! Be careful that it isn't that they know c-peptide and GAD tests cost them money.

 

[paul-1976]

This definitely needs more investigation as I was classed a type 2 initially and later re-classed 1.5 and the tests Xyzzy mentioned above will give a clear picture to what's going on.

Incidentally I was on Roaccutane in the 1990's for acne-AWFUL drug that should be banned as it is in the states.

 

[nymple]

Hmmm your doctor just needs to order c-peptide and GAD tests for you. I'd be a bit concerned that my GP either doesn't know this or worse how to order the tests from the hospital! Be careful that it isn't that they know c-peptide and GAD tests cost them money.

Xyzzy my doctor fully admitted to not knowing enough about diabetes and offered to let me see a different doctor in the practice. He was a bumbling idiot who I fervently disliked. I think in the long run I'd rather have a caring and supportive doctor who admits to being a bit lacking in knowledge than one who knows (or thinks they know) exactly what they are doing, to the point that they don't listen to me...

She has liaised with the Diabetic Nurse since my diagnosis to ensure they are in agreement on the course of action. I think she is largely just covering her back by getting me to check with the Diabetic Nurse before ordering tests but I'm frustrated and impatient! Haha


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[nymple]

This definitely needs more investigation as I was classed a type 2 initially and later re-classed 1.5 and the tests Xyzzy mentioned above will give a clear picture to what's going on.

Incidentally I was on Roaccutane in the 1990's for acne-AWFUL drug that should be banned as it is in the states.

Thanks Paul. I shall bug my doctor about the tests. The worst part was, I had resisted taking roaccutane for years and one persistent doctor (at my old practice) wouldn't leave it alone because of my terrible acne and convinced me. He said that at 29, I was getting a bit too old for skin problems and wouldn't I like some relief... How I wish I had told him not to be so patronising and stayed spotty! Haha. It is indeed an awful drug!


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[elaine77]

The NHS have majorly cocked up basically. They have made assumptions on people and labelled them as type 2 when they haven't needed insulin straight away or when they haven't even hit the "markers" for it just because they don't know enough and don't want to spend money.

There are goodness knows how many wrongly diagnosed LADAs out there sitting under a type 2 diagnosis because GPs have been basing diagnoses on out of date information and don't want to spend the extra money getting a correct diagnosis because the "treatment would be the same".

Never mind research, never mind your own right to know exactly what is wrong with your body, penny pinching takes precedence! You just need a GAD test and a c-peptide test done. Low c-peptide and elevated GAD antibodies is enough to confirm LADA; high c-peptide and normal GAD levels would confirm type 2...


Diagnosed with GD in 2010, Completely disappeared postpartum. Re-diagnosed December 2012 with type 1.5 diabetes, age 26, BMI 22 currently controlled by only Metformin, 500mg twice a day.

 

[mo1905]

The NHS have majorly cocked up basically. They have made assumptions on people and labelled them as type 2 when they haven't needed insulin straight away or when they haven't even hit the "markers" for it just because they don't know enough and don't want to spend money.

There are goodness knows how many wrongly diagnosed LADAs out there sitting under a type 2 diagnosis because GPs have been basing diagnoses on out of date information and don't want to spend the extra money getting a correct diagnosis because the "treatment would be the same".

Never mind research, never mind your own right to know exactly what is wrong with your body, penny pinching takes precedence! You just need a GAD test and a c-peptide test done. Low c-peptide and elevated GAD antibodies is enough to confirm LADA; high c-peptide and normal GAD levels would confirm type 2...


Diagnosed with GD in 2010, Completely disappeared postpartum. Re-diagnosed December 2012 with type 1.5 diabetes, age 26, BMI 22 currently controlled by only Metformin, 500mg twice a day.

totally agree !

 

[shane-1]

I don't think some gps are unable to interpret gad ,c pep tests properly , maybe seeing a consultant might be more appropriate as he /she can advise best on treatment

 

[Daibell]

Hi. I agree with the others and was one of the many mis-diagnosed. The c-peptide will show your insulin level and if low then it means your pancreas is failing i.e. T1.5. The GAD will show-up GAD anti-bodies. There are a few other rarer anti-bodies plus viruses etc can affect the pancreas as well. My c-peptide showed very low insulin whereas my GAD was negative. Sounds like your GP is trying to do his best and not knowing everything is not a criticism; following-up is the right approach.

 

[smidge]

Hi Nymple!

I'm another misdiagnosed Type 2 who turned out to have LADA. Went thorugh the same nonsense trying to get the tests done. In some areas of the country, GP practises can't order the GAD tests and have to refer you to a diabetes clinic in a hospital where the consultant has to order the tests. If the GP rings the diabetes unit at your local hospital they will tell her how to go about ordering the tests in your area. Just ask for a referral.

Smidge

 

[Ian DP]

I asked my GP for a GAD test..... And told him why, and reasons / symptoms etc.... In other words justifying my reason for the test.
Nurse at the practice took a blood sample (on the same day I requested the test), but advised that it would take 3 weeks as it had to be sent to London (and there is only one place in the country that can do the test). From this I was diagnosed LADA, and referred back to the diabetic hospital.

In fairness, the only real change this has made is that I have been told to stop taking all medication. Which I had already done weeks beforehand anyway, because I could see it was making barely any difference to my sugar level readings as I gradually weaned my way off of them..... Oh, and any travel insurance I had would be invalidated, unless I advise (and paid the extra) accordingly. No dietary change advised.... Just stick to healthy diete.
Ian



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[nymple]

Thank you all for your replies! I feel more confident about getting what I want now. I just hope she doesn't insist on speaking to the diabetic nurse first! Haha I'm so impatient.

Smidge that information is particularly helpful, thank you.

I must write my pre doctor check list before I head off in the morning so I don't miss any points!


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[SueKen]

Nymple,
I was diagnosed type 2 in Oct, with a similar GP, open to discussion. I had no symptoms, and no family history, but was a little overweight, aged 43. At my first review in November, I asked about LADA, since there is autoimmune disease in my family. My GP told me she didn't really know, but to see the diabetes specialist in the practise. So 3 weeks later, I saw him, and he agreed to refer me to hospital consultant, as they are specialist tests which need to be ordered by the hospital around here. I saw the consultant 10 days ago, who agreed to do GAD and Islet cell antibody tests. Now waiting for results, apparently it takes several weeks. Round here they are sent to Birmingham.
Sue

 

[xyzzy]

Xyzzy my doctor fully admitted to not knowing enough about diabetes and offered to let me see a different doctor in the practice. He was a bumbling idiot who I fervently disliked. I think in the long run I'd rather have a caring and supportive doctor who admits to being a bit lacking in knowledge than one who knows (or thinks they know) exactly what they are doing, to the point that they don't listen to me...

She has liaised with the Diabetic Nurse since my diagnosis to ensure they are in agreement on the course of action. I think she is largely just covering her back by getting me to check with the Diabetic Nurse before ordering tests but I'm frustrated and impatient! Haha


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Ok but I still wouldn't be too understanding as you need to get the tests and treatment you need as quickly as poss. Also remember whatever the nurse says even if it differs to your doc the doc is legally responsible for your care they can't sub contract that out to anyone else.

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