Newly diagnosed.....kinda

Hi everyone,

I am new to the forum, just wanted to introduce myself and maybe get some advice if possible.

I had type 2 diagnosed last year after incidental blood result findings. No clinical symptoms. Went for first nurse appointment for medication and she wasn't so convinced looking at me. I went to see another gp the next day with no ketones present it was suggested I was a rare type and sent to specialist. Initiated diet control.

Specialist thinks genetic form, c peptide slightly higher than average, 2 of 3 GAD negative one has value of 44. MRI scan shows nothing unusual. Given 10mg gliclazide to control bg, droped me into hypo 12h later, increased carbs. Fatigued, tired and lack of concentration overall. Genetic tests negative. Now 8 months on I am stil no further forward with no further tests planned. Doctor suggesting higher dose of gliclazide as bg readings stared to creep up. Hba1c readings initially 60, then 53 (diet control only) now 63 after taking gliclazide for 3 months.

Has anyone else not had a straight forward diagnosis? I'm so frustrated with what to do

Daibell said:

Hi. If you are slim and possibly losing weight easily then Late onset T1 (LADA) is always a possibility as it was for me. As the c-peptide was slightly higher than average that works against being LADA. I can see why diagnosis at this time may be difficult. I would control the carbs you eat to avoid weight gain with the Gliclazide and make sure the Gliclazide dosage is adjusted as needed to avoid hypos. See how the HBA1C future readings go and discuss options with GP/Specialist. Beware NHS diet advice which can be completely wrong for us. For diabetes most of us need to keep control of the carbs and not worry about fats.

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Thank you for your reply.
I also thought this after reading..... a lot! I feel like I fit the catagorie for this time with my age etc considered. I had read that gliclazide isn't an idea starting point for latent autoimmune either. However my last letter from specialist suggested they dont seem to think I have this either. The only thing mentioned is that a diagnosis may become more apparent with time

I am slim and unfortunately losing weight and struggling to keep it on! I have found it difficult to know what's best, as you say advice seems to be different dependant on type. Did it take you a long time to be diagnosed?

Thanks

Antje77 said:

Did you have a test for anti-GAD 3 times or do you mean they tested blood for different antibodies and you tested positive for one of the antibodies?

Have you had a second C-peptide test recently to see how your insulin production is now?

I've had a diabetes diagnosis for close to 3 years now and have been on insulin since a month after diagnosis. I don't have a straight forward diagnosis even now, even though my specialist and I have decided to go with the assumption I'm T1 (LADA). That only happened at the beginning of this year, over 2 years after my initial diagnosis, and it didn't change my treatment. I'm fine with that, as my treatment works well.
Not to say you shouldn't try to find out what kind of diabetes you have, only to show that good treatment is possible even without a definite diagnosis.

Good luck, and let us know how you get on!

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So apparently there are 3 sections to the GAD test, 2 were negative and one antibody was positive but a very low number of 44. I have had this test twice once by go who said negative all round then once by specialist who said the above.

I haven't had a second c peptide test but I assume it might be worth checking again, I will see if I can request this.

That's a long time of not knowing and waiting, I'm glad you have medication that helps now.

I suppose I'm just tired and frustrated as i i am good with diet control but sometimes I will get a high reading and I just don't know why! I am exhausted on the 10mg of gliclazide I'm not sure why but it makes me so tired when I take it and my readings haven't improved with it. I feel like I'm in the dark a bit, I have a further appointment in 6 weeks to revise things.

Thanks for your reply