Diabetes whirlwind of confusion.

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Jellynurse

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Type 1.5 LADA
Hello, just wanted to introduce myself as I'm new !! .my name is Ellie I'm 30 and a nurse, have recently (about 3 months ago) been diagnosed as having diabetes, however no one knows what kind type one, two LADA etc.

I found out doing my blood sugar at work showing another member staff how to use the glucometer. My reading came back as 16 but I hadn't eaten ... Anyhow from there the doc took my bloods and well confirmed diabetes.. Up until this point I had had no symptoms except in hindsight maybe some weight loss (I went from 8,11 lb to 8 stone. Because of my age and weight the doctor queried type 1.

I then proceeded to get thirsty, tiredness like never before and felt very unwell, cue starting me on insulin ....basal and bolus. Last two months been ok , odd morning hypo well (3.9) but from what I had been gave me shakes, hot fainty hypo feeling !!!. So you can imagine my surprise when my GAD has just come back as neg and they now don't know what's going on. The surgery told me a week pre to my con appt that I had type two but didn't know of I should stop insulin or not, I kinda took it upon myself to stop an monitor and to be honest with a strict diet I'm reading between 7-13 mmol throughout the day...
I have now been told to try metformin and gliclazide and see how that goes !!!!!

Anyhow I was wondering if the GAD test can be done whilst on insulin therapy as I have read that it shouldn't be but the reg (who seemed very confused by my predicament full stop said no but he didn't sound convinced tbh) ...

I now wait another 3 months to see the consultant ;((........

Sorry to bore you all with the details but my head is spinning !!!!
If anyone has been in a similar sitch I'd love to hear from you
Ellie x
 
I think my head would be spinning too, Jellynurse (love the name). Welcome to the forum. 🙂 I'm sure someone with some useful info will be along soon.
 
Hi Ellie, welcome to the forum.

I was initially diagnosed as T2 5 years ago. I was 52 and obese, but had no real symptoms until shortly before I collapsed with what I later learned was DKA - I never have had the thirst/peeing thing. I have other autoimmune conditions and no family history of D, plus the T2 meds not working I was eventually successful in challenging the Dx and had the GAD and C-peptide tests which confirmed LADA. I'm currently on a mix of Insulin and Victoza which sort of works. Unfortunately, there are days when my pancreas throws a spanner in and dumps a load of insulin so I end up with unexpected hypos, usually at the worst possible times. As for doing the GAD while using insulin, I don't know, mine was done before.

If the Metformin and Gliclazide don't work then maybe it would be worthwhile having the GAD/C/pep done again in a few months.
 
Hi Elle & welcome it does sound a bit not normal really good luck finding out 🙂
 
Hi Jellynurse, welcome to the forum 🙂 Sorry to hear about your diagnosis and the confusion that has come along with it. Personally, I think age is irrelevant when it comes to determining type of diabetes. I was 49 and I have encountered countless others who took a rapid route to insulin therapy at a similar age or older. Did they do a C-peptide test as well as the GAD? The levels of C-peptide accurately reflect the amount of natural insulin you are producing, and a decline in this would indicate slow-onset Type 1 (aka LADA/Type 1.5). I had symptoms for about 18 months prior to fnally being diagnosed when I caught a virus that pushed my failing pancreas over the edge and I ended up with DKA, so it can be confusing for quite a long time. We've also had several members here who have been misdiagnosed, some having to cope for years on inappropriate medication regimes.

I hope that the new medication works for you, but if things do get worse don't be afraid to go straight back on the insulin.

Please ask any questions you may have, we have a wide range of experience amongst our members, and no question is considered 'silly'! 🙂 Let us know how things go for you 🙂
 
Thankyou and hello !

I have asked for c peptide text to be done but the reg has to check with the consultant before he will do it.
I forgot to mention that I have no family history and have had three kids with no gestational diabetes.

Will persist with the met an glic an see what happens.

Thanks for your input it's nice to be able to chat to people who "get it" 😉🙂
 
I'm new here too jelly nurse, so hello! I'm still learning all the time and i was diagnosed 5 years ago. Neglected myself but am starting to sort myself out. Anyway welcome and look forward to possibly hearing back off you. I'm 29 and don't know anyone else around my own age who is diabetic. X
 
Hey jelly nurse! Also new here and found my self in a situation similar to yours in that they didn't (and still don't know for definite what type I am)
My first and only symptom was frequent boils which is the reason I first went to the doctors. I was told from numerous blood tests if had done that my sugars were crazily high and due to my age (I'm 24) and a number of other things they felt I was type 1 so after being in histerics I got used to the idea and for four days I injected myself. Then I went back to the diabetic nurse to be told they think I'm actually type 2. So then I was taken off the insulin and out on metformin 2000mg which reeked havock on my stomach and I had constsnt stomach cramps and having to dash to the loo. I went back and complained that I couldn't live like this and have since been out on the SR Bolamyn 2000mg and the same symptoms have arrison.
Every time I eat I get the stomach pain and then needing to go to the toilet. It's getting me down and I'm absolutely exhausted (which I swear people think I'm making up)
Anyways I'm sorry for rambling on but I just wanted to say that there are people out there who do kinda understand 🙂
I hope you get your answers soon!
 
"Every time I eat I get the stomach pain and then needing to go to the toilet. It's getting me down and I'm absolutely exhausted (which I swear people think I'm making up) "

Hello Jellynurse and All, I am new to this site too and I dont have any answers yet, I just gasped when I read this as I identify so strongly !

I will do anything to get energy back and out of pain, I have lost jobs over the past two years and its effecting every area of my life ! I dont mean to moan but I had no idea this would we so rough to deal with !!

I guess I just want to say I get it, and glad we are here....😱 KAYE
 
Welcome to you ALL.🙂 Sounds like you're all having a tough time. You've come to the right place.
 
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Kaye said:
"Every time I eat I get the stomach pain and then needing to go to the toilet. It's getting me down and I'm absolutely exhausted (which I swear people think I'm making up) "

Hello Jellynurse and All, I am new to this site too and I dont have any answers yet, I just gasped when I read this as I identify so strongly !

I will do anything to get energy back and out of pain, I have lost jobs over the past two years and its effecting every area of my life ! I dont mean to moan but I had no idea this would we so rough to deal with !!

I guess I just want to say I get it, and glad we are here....😱 KAYE
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Welcome to the forum, Kaye. Would you like to statrt your own introduction thread?
 
Hi jelly nurse and welcome to the forum. Hope you get the answers you need soon.
 
Hi Kaye!

Completely understand! People at work think I'm being lazy and don't seem to get that I'm so exhausted!

Because my sugars are ok (between 6-9 usually) the doctors don't seem to want to do anymore. I've got an appointment with the diabetic nurse tomorrow and I'm going to complain like mad.

How have you coped for two years like that Kaye? Mine only been a few months and Ive had enough.

Sorry Jellynurse for intruding on your post haha!

Kelly
 
Hi Jellynurse
We could be the same person! I too was diagnosed back in July and put immediately on NovaMix. I presented with very similar symptoms as you. Like you too I'm the same weight but much older (52)
Within a week of injecting I had to reduce my dose as I was hypo-ing. The dose was gradually reduced to 4 units a day. I went to see the consultant who put me on Gliclazide. He recommended 80mg twice a day. I chose at that point to only take 40 as I thought the higher dosage might be too much. Again I struggled and was having to eat all the time to prevent my levels dropping too low.
I rang my DN at the hospital and said that I would like to come off medication as I was struggling to cope. With reluctance they agreed. At this point I had got so frustrated and felt so alone but after reading posts on this forum I felt much better.
No one seemed willing to say what type I was, which again I found frustrating! I started being diagnosed as T1 but as it's now under control (for the moment) they are now saying T2...
I went to see the consultant again last week and am still not taking any medication. I'm just restricting my carbs and increasing my activity level and at the moment this seems to work for me. My only worry is that I'm not gaining any weight and I would like to!
Hopefully things turn out okay for you. X
 
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