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Question for Type 1.5s

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
E

evilcat

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Relationship to Diabetes
Type 2
Hi all,

For those of you diagnosed as T2 when you turned out to be Type 1.5, did you have a gut feeling that the diagnosis might be wrong or did you only suspect when the meds stopped working?

I had just turned 36 when I was diagnosed and it came on out of nowhere. Within a month I'd dropped over a stone in weight and had every single symptom listed on the NHS Direct website. I don't know the exact figures for my first two FBG tests but they were over 20 and I had trace ketones.

By the time I went for my first blood test I was vomiting, with stomach pains and shortness of breath. Unfortunately I hadn't updated my contact details at the doctors, so they couldn't phone me - eventually a letter got to me via my old address telling me to go to hospital if I was sick 😱 By this point however, I'd started looking on this site and put myself on practically a zero carb diet which I think made the difference.

I'm on a reduced carb diet, plus Met and Glic and seem to be doing okay (last HbA1C was 6.0), but if I miss my Glic for any reason then my levels shoot right up. For example, I went out on Monday night and forgot to take my pills - fasting level in the morning was 9.2 😱

I had read that some Type 1.5s were treated with a small amount of Glic to give the pancreas a kick and was thinking that maybe this is happening with me...

I'm tempted to ask for the tests when I next see the doctor but would be grateful for any comments on your own experiences.

Sorry for the long post!!
 
Ask for the anti-GAD and c-peptide tests?

I'm in limbo at the moment (waiting for the above results) but I have a gut instinct that I am not a Type 2, I don't know exactly why, I just do. :(

There is information out there that things like Gliclazide are not a good thing for Type 1.5's to be taking though, but they often are if they are misdiagnosed as a Type 2....it can actually make your pancreas pack in earlier than it might have if treated with insulin earlier.
 
Many thanks Laura

I think I will ask for the tests next time I see the doctor. I'd also heard that Gliclazide wasn't good if you had Type 1.5 - I don't want to cause any further damage to my pancreas...
 
evilcat said:
Many thanks Laura

I think I will ask for the tests next time I see the doctor. I'd also heard that Gliclazide wasn't good if you had Type 1.5 - I don't want to cause any further damage to my pancreas...
Click to expand...

I suspect that if I had gone to my doctors when I just had symptoms then I would have been presumed Type2 and put on gliclizide. However, I ended up with DKA which more or less confirms Type1 so went straight onto insulin. I was discussing the fact that I may still be producing some homegrown insulin with my consultant the other day due to my very low basal insulin requirements, and he agreed I probably was but didn't think it was worth me changing my medication regime as it was working so well for me - presumably the alternative would have been gliclizide to force my ailing pancreas to produce more insulin which would have been a bit of a disaster for me, I feel, as you say it may have ended up exhausting my beta cells and ruining my control.
 
Hhm, interesting thread. Thanks for the 'heads up' about gliclizide, can anyone link me to anywhere confirming this?

Actually yesterday when I went to see GP he mentioned it and by the sounds of it I don't want to be on that D:
 
Hi

When I was diagnosed I spent a lot of time researching diabetes on the web and noted the comments on a couple of sites. I've just checked the patient info leaflet and it doesn't say anything specific, but these sites do mention it shouldn't be given to type 1s:

http://chealth.canoe.ca/drug_info_details.asp?brand_name_id=222&rot=4

http://bodyandhealth.canada.com/drug_info_details.asp?brand_name_id=5028

I'm not sure why I could only find references on Canadian sites, but it is the same pill...

This page makes reference to the potential implications of taking Glic for Type 1.5s:

http://www.phlaunt.com/diabetes/18382053.php

"Also, several of the oral drugs used to treat Type 2 diabetes stimulate the beta cells to produce insulin, and because LADA involves an autoimmune attack which is stimulated by the production of insulin at the beta cells, stimulating insulin production by the beta cells with drugs may increase the ferocity of the attack, killing more beta cells.

So it is very important to get a correct diagnosis so you can avoid the drugs that stimulate insulin production by the beta cells. These drugs include the sulfonylureas like Amaryl and Glipizide and may also include the incretin drugs, Byetta and Januvia because they also stimulate insulin production by the beta cells."

From a personal perspective, taking it has made a huge difference, with my HbA1C dropping from 12.5 to 6.0 in 6 months but I have a nagging feeling that in the long run it could be making things worse if I have been misdiagnosed...
 
I would go back to what you said in your first post. Explain to your GP (or even better get a referral to a consultant endocrinologist) the circumstances surrounding your diagnosis, which are not 'classic' Type 2, and request the GAD antibody and C-peptide tests.
 
Northerner said:
I would go back to what you said in your first post. Explain to your GP (or even better get a referral to a consultant endocrinologist) the circumstances surrounding your diagnosis, which are not 'classic' Type 2, and request the GAD antibody and C-peptide tests.
Click to expand...

Many thanks - I think I will book another appointment to discuss further. My surgery is pretty good so hopefully they'll agree to book me in for the tests.
 
evilcat said:
Many thanks - I think I will book another appointment to discuss further. My surgery is pretty good so hopefully they'll agree to book me in for the tests.
Click to expand...

Good luck! Even if it turns out you have the right diagnosis it's better to know than to be kept wondering! 🙂
 
I hope you get some answers and get your treatment sorted out asap...wondering if what you're doing is helping or hindering is not a nice feeling to have hanging over your head.

Good luck with your consultant 🙂
 
Many thanks Northerner and Katie 🙂
 
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