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Frustration

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

Rosiecarmel

Well-Known Member
Relationship to Diabetes
Type 1.5 LADA
My levels just aren't going down!! I had the GAD test and it came back negative so my doctor has put the idea of being type 1 out of her mind. So we decided now we have to focus on getting the right type 2 treatment. I was previously on 1.5mg metformin (i can't tolerate 2g) and 80mg gliclazide. She's put me now on 1.5g metformin and 120mg of gliclazide. Next month is going up to 160mg. I just don't feel like it's going to work. I've lost half a stone since being diagnosed in August which isn't a lot but for me it is as I've been gaining weight every year! I'm trying so hard with my diet, obviously I have bad days and I'm trying to get into the routine of eating at set hours instead of "grazing"

My levels went down to around 11 which I was so happy about because my original levels were 17/18. But now they're creeping back up. On a morning, they can be around 11 but that's because I've not eaten from 9pm til when I wake up at 6am. The second I eat ANYTHING my levels shoot up and don't go down. I just don't understand and I'm so frustrated. Im worried about what the next step is from here.... I don't want to go onto insulin as from what I've been reading online, it makes you gain weight which is the opposite of what I'm trying to do. I just want normal blood sugar levels :(

Sorry for the rant but I'm just feeling sorry for myself today
 
We all get days when we feel sorry for ourselves and nothing seems to go right. Have you thought of keeping a diary or record of some kind to see if it points to a pattern? Have you been under pressure with anything lately as they may push things up.

Unfortunately diabetes is not an exact science and is as individual as all of us. It is indeed very frustrating. I hope something is sorted for you soon and things settle down for you.
 
I'm a student nurse, i live under pressure ha! No I haven't thought of keeping a diary, that's a good idea thank you 🙂
 
Insulin will only give you weight gain if the calories you eat are greater than the calories you need to sustain you. Yes it is a growth hormone.

Although, gliclazide will also give you weight gain... It just makes your body make more insulin - if it can do so.
 
I found it very difficult to keep my weight steady, let alone lose weight, when I was on mixed insulin, but on MDI weight gain should not be a problem.
 
My suspicion is that the GAD test alone was insufficient to show whether you are Type 1 or not - as I think MarkT has suggested in the past, the GAD test alone can be inconclusive. You should also have had a C-peptide test which determines how much insulin you are producing. If you are producing lots, then this would show insulin resistance, and Type 2, but if you are not producing as much as a person without diabetes would produce then it would indicate Type 1. Type 2s can also produce insufficient insulin, but this is normally after many years, and not the short space of time that applies to you, Rosie. If your pancreas is unable to produce sufficient insulin (i.e. some of your beta cells no longer work) then gliclizide can only ever be a temporary solution - some people believe it simply speeds the decline of the beta cells because they are being 'forced' to over-produce and become more quickly exhausted.

Your beta cells actually prodcue something called proto-insulin - this then 'splits' into insulin and c-peptide, therefore, by measuring the amount of c-peptide they know how much insulin your body is producing. I was told once that the test costs the NHS about £200, which isn't a lot of money - certainly if it leads to a correct diagnosis and treatment. I would ask your GP if this test has been performed, and if not, why not?
 
Rosie, I'm sorry things are being so tough for you.
Keeping a diary is definitely a good idea to trace patterns.
I was thought to be type two for five years, and I'm now on insulin, I'm awaiting the results of the GAD test.
However, I was so resistant to go on insulin, I really didn't want too. Before I started insulin, I was on the highest doses of metformin, gliclizide and stitagliptin, it made me feel awful and wasn't really helping my BGs at all. I started insulin a few weeks ago, and already feeling heaps better, my levels have come right down.
My point is, the thought of insulin can be scary, but if it's the right thing for you, then it's better in the long run. And I haven't gained any weight in the last few weeks whilst on insulin.
Also, maybe consult a nutritionist about your diet, to see if they have any tips for you. I'm in the medical field myself, so know all about irregular hours and eating patterns, maybe some outside help could help?
 
If you can get the c-peptide test done and it turns out you are T2 then there are many other medications your doctor could prescribe that might work better for you. Perhaps a slow release version of Metformin or even one of the injectables such as Byetta/Bydureon or Victoza. Maybe you could discuss this with her at your next appointment?

PS: I've been on insulin for quite some time now and I'm slowly losing weight despite that.
 
Here is a useful webpage with a list of tests: https://labtestsonline.org/understanding/analytes/diabetes-auto/tab/test/
I'm fairly sure that I had IAA as well as GAD and quite potentially they did ICA as well. It's probably worth you encouraging your team to do the others as well. Not all the autoantibodies are always present.

Also, my diabetes specialist said that are more autoantibodies that are known about but there was no clinical test available.

Even if you are a Type 2, it's still worth you considering insulin in the short term in order to get your levels down. Those high levels will be damaging your pancreas and potentially you might end up with little to no insulin production anyway... Glic only works as long as you have got some healthy pancreas cells.

Alan I was told by my consultant that the c-peptide test was an in-patient test and that you had to be off all medication for a month - which was why they didn't like doing it. Not sure exactly how true that is.
 
Hi Rosie, sorry to hear you're still struggling with your levels. Hope you manage to get everything sorted soon. X
 
Mark T said:
Here is a useful webpage with a list of tests: https://labtestsonline.org/understanding/analytes/diabetes-auto/tab/test/
I'm fairly sure that I had IAA as well as GAD and quite potentially they did ICA as well. It's probably worth you encouraging your team to do the others as well. Not all the autoantibodies are always present.

Also, my diabetes specialist said that are more autoantibodies that are known about but there was no clinical test available.

Even if you are a Type 2, it's still worth you considering insulin in the short term in order to get your levels down. Those high levels will be damaging your pancreas and potentially you might end up with little to no insulin production anyway... Glic only works as long as you have got some healthy pancreas cells.

Alan I was told by my consultant that the c-peptide test was an in-patient test and that you had to be off all medication for a month - which was why they didn't like doing it. Not sure exactly how true that is.
Click to expand...
That's not the impression I got from my consultant - I said I wasn't keen on having to go to the hospital for the test as it's a pain travelling there so he said he could arrange it for when he was next visiting my surgery. However, I'll never know, since he never followed up on his promise to have me tested 🙄 But it's clearly more involved than a simple blood or urine test. I seem to remember him saying they need to collect the urine over 24 hours, which might be easier in hospital and I suppose it would depend on what medication you were on as to whether it might influence/invalidate the test (I'm only on insulin, which shouldn't matter as injected insulin does not contain C-peptide, and a BP med, which I could easily stop).
 
Well Patti had the C-peptide test done a few years back, 8 years after she was diagnosed Type 2, and 7 and a half years since she had been treating herself on ONLY insulin, in the same proportions as ANY Type 1 might. Guess what, she's Type 1; no surprise there. (It was Alan Shanley who first spotted that, incidentally!) BUT importantly of course - simply changing that number on her NHS records, enabled her to get a pump!

Anyway - just an armful of blood and a very long wait - nothing more dramatic!
 
Hi Rosie sorry to hear of your woes, What type of metformin are you on? I can't tolerate the standard metfornin but I can take Glucophage SR which is a modified release version. I take 2g per day and 320 mg Gliclazide plus Humalin I and Humalog insulins and at last seem to have got every thing in order.
Hope thy are soon able to get you sorted.
 
trophywench said:
Well Patti had the C-peptide test done a few years back, 8 years after she was diagnosed Type 2, and 7 and a half years since she had been treating herself on ONLY insulin, in the same proportions as ANY Type 1 might. Guess what, she's Type 1; no surprise there. (It was Alan Shanley who first spotted that, incidentally!) BUT importantly of course - simply changing that number on her NHS records, enabled her to get a pump!

Anyway - just an armful of blood and a very long wait - nothing more dramatic!
Click to expand...
DizzyDi had her diagnosis changed to Type 1 several years after originally being diagnosed Type 2 and put straight on insulin, the medics need to get their act together, especially if it's restricting people from treatments they might benefit from!
 
Ten years ago at the age of 66 I was diagnosed in hospital as type 2 and was put on MDI from day one ( Novorapid and Levimer) and told by consultant that I will have to inject for the rest of my life.
 
Thanks everyone. I'm normally a positive person but today I'm just having a miserable day!

In regards to metformin, I'm on the modified release and even that's making me feel queasy. My body just doesn't like metformin lol!

I don't know if my GP would even do this CPeptide test as she didn't even know why I'd had the GAD done!

I'm currently 17.6 and have a banging headache :( if insulin is the only thing that will bring my levels down then I guess I'll have to accept that as and when. Right now, it just seems a little scary!

I'll look into those other injections that aren't insulin and ask my doctor, Thank you 🙂
 
Don't be scared of insulin Rosie, it brings different considerations but it will give you much greater control over your levels, which can mean a much better quality of life. So horrible to feel poorly all the time, if you can't get any solutions from your GP then insist on either a second opinion or a referral to someone who can help 🙂
 
I agree with Alan, don't be scared of insulin. I have been trying to switch over to it for ages, lost count of the attempts to switch over. i found gliclazide is not suitable for me as it is so erratic in how it works on me. I would say insulin when in the correct combination of food and amount of insulin injected is far more controllable.

With gliclazide it basically forces your pancreas to produce more insulin and if like me some days it works well or to well on others it does not work. This can lead to one effectively having to eat more when one's levels drop, or having to skip meals when levels are way to high.
 
As Northerner said, insulin does give you a much greater control over your blood glucose (although diabetes still likes to surprise you with a curve ball every now and then, like today my BGs have all been high for no good reason!). As I mentioned, I started on insulin a few weeks ago, and feeling much better in myself as I now feel in control of my body and my life. When I was on the tablets I kind of felt like I was hoping for the best in terms of my BG levels, I felt like I wasn't in control and became very depressed and anxious.
Insulin isn't as scary as it seems, and if you do have to start insulin therapy, you will soon get used to it.
Whatever your treatment regime is, I hope you start to feel better soon xx
 
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