Had first Clinic results....More Confused than ever

[Mark14400]

Hi,

First Clinic Results back:

HbA1c 38mmol/mol, total cholesterol 3.2mmol/L, TSH 1.52 mU/L, creatinine 85umol/L, feet nice and pink...Carb to insulin 25g to 1 ish...Bit on the fat side and High Blood pressure. That concerned the consultant (195/90) so prescribed Amlodipine...nobody's perfect
Big point is I'm GAD negative and my type one diagnosis was based on a classical clinical presentation (I broke the hospital BG meter, Ketones present and had lost 3 stone in weight). Any chance I'm not Type 1? I'm starting to think, does it really matter, I'd probably be on Insulin anyway but not knowing one way or the other is ripping me apart...It's been over 6 months since diagnosis and it turns out I am none the wiser.....Are there any other tests out there that will confirm this or do I just accept the consultants diagnosis.....Mark

 

[EllsKBells]

Hi @Mark14400 I'm afraid being GAD negative doesn't mean much - 25% of T1s are. So with a classical presentation like that, I would be surprised if you weren't, but I'm not a doctor or any kind of medical professional. Have you had a c-peptide test, or a test for IA2 antibodies?

 

[Mark14400]

Thanks @EllsKBells I've not had a C-Petide test. Is that worth doing whist on Insulin...I was told it should be done before you start on Insulin therapy

 

[librarising]

"Anti GAD antibodies are found in 65 - 85% of patients with Type I Diabetes, in 70 - 90% of patients with LADA"
http://www.southend.nhs.uk/pathology-handbook/test-directory/test-directory-g-index/gad-antibodies/

Doesn't help, does it, a negative result ? Leaves us in diagnosis limbo, although you're more than probably T1/LADA.
Same boat as me. Perhaps we should have our own section on the forum ? After all, we are special !!
Geoff

 

[Mark14400]

Ha.... @librarising ....Forum called "Type No Idea"

 

[CJOtter]

I'm assuming that you are adult onset.

I have adult onset T1 and my honeymoon period was very long. this could be what is going on.

 

[Mark14400]

@CJOtter Yes I am 46..... Do you mind if I ask how long was your honeymoon period...my consultant mentioned the same thing in the notes...

 

[CJOtter]

It was 20 years ago now but around 6 months or so. The frank period of extreme thirst, peeing all the time and weight loss was spread over 3-4 weeks ( unlike 3-4 days that's the kids get!) and that was preceded by 6 months of getting tireder and tireder, with retrospect feeling like my head was full of syrup. I was 30.

 

[Mark14400]

Virtually identical to me except I am through the first 6 months....I give up trying to understand...If my BG goes Ape I'll deal with it...I'll accept the Type 1 diagnosis but not happy...Having weighted up the pros and cons, done a lot of research and on the balance of it I have come to the conclusion that diabetes isn't for me and I'd like my money back please.....
....wishing you all the best in health....Mark

 

[EllsKBells]

In some ways, I think it is harder for an adult such as yourself to be diagnosed - I'm not saying that it isn't awful for young children to be diagnosed, nothing could be further from the truth. But I was 16 when I was diagnosed, and nobody gave me any results, any numbers - "you don't need to know that, you're too young to understand" - so there was never really any basis for me to question it. But being a little bit older, you do get these numbers, and you can look them up, and sometimes they feed the little voice in the back of your head that says 'this can't possibly be happening to me, it isn't real'.

 

[Mark14400]

In some ways, I think it is harder for an adult such as yourself to be diagnosed - I'm not saying that it isn't awful for young children to be diagnosed, nothing could be further from the truth. But I was 16 when I was diagnosed, and nobody gave me any results, any numbers - you don't need to know that, you're too young to understand - so there was never really any basis for me to question it. But being a little bit older, you do get these numbers, and you can look them up, and sometimes they feed the little voice in the back of your head that says 'this can't possibly be happening to me, it isn't real'.

Perfectly written....and so true...thumbs up

 

[CJOtter]

Virtually identical to me except I am through the first 6 months....I give up trying to understand...If my BG goes Ape I'll deal with it...I'll accept the Type 1 diagnosis but not happy...Having weighted up the pros and cons, done a lot of research and on the balance of it I have come to the conclusion that diabetes isn't for me and I'd like my money back please.....
....wishing you all the best in health....Mark

I soooo relate to that!

For a long time after being diagnosed I felt like I wanted to crawl under the table and it all go away. The constant joke between my husband and I was making shopping lists and at the bottom would always be "new pancreas for Charlotte ". We have great physical care from the NHS, we are provided with the tools that allow us to approximate normal physiology. What isn't well funded is our psychological care. We have been bereaved on a very personal and intimate scale and we're sent out with some insulin pens, a meter and a bit of education and expected to get on with it. I finally received psychological support about 10 years down the line after I'd burst into tears in the third outpatient appointment in a row.

Diabetes is sh:t. None of us would choose it and we would all jump at a cure. It gets easier to cope with, mainly because the longer you live with it the more knowledge you get about your particular version of this disease. Hang in there.

 

[Diamattic]

I wasn't diagnosed as late as you, but my honeymoon period lasted me about a year.
While it was going on my carb ratio was about the same as yours to the point where i could eat some snacks without needing insulin at all.

They didn't do any GAD tests on me, the Dr. told me its just better to go straight on insulin then fight this thing for years just to see it get worse and worse until i NEED insulin. Honestly, the better you manage now daily the longer your honeymoon will last.

Having a long honeymoon is like a safety net to learning diabetes, if you go through all the motions now and mess up it wont be as bad as those without the honeymoon, you'll bounce back faster. When your honeymoon is up, you will wish you had done more to keep it around longer instead of ignoring it and 'just living your life' as many try to do.