Whingeing again

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AlisonM

AlisonM

Much missed Moderator
Relationship to Diabetes
Type 1.5 LADA
Sorry, but all I seem to do these days is complain about how awful I feel and that's what this post is about too.

My numbers have been running in the low to mid teens all weekend and my feet are killing me, plus I'm not sleeping much. I'm not hungry (although I do eat because I know I must), I've taken to making a flask of soup and just having small amounts regularly. The pills I'm on now don't seem to be helping and I'm still waiting to see the consultant. My main worry now is the meds I'm on are meant to 'trick' the body into making more insulin... which only works if my body can make the stuff in the first place... judging by my readings, mine can't make enough. I was doing a workshop yesterday for administrators in the Voluntary Sector and I really struggled to get through the day, by the end I was exhausted and was in bed by 7pm, not that I got much sleep, I just lay there in a dwam (nice Scots word that, means dazed and confused, or not all there, like out to lunch).

The only symptoms I don't have (and never have had) are thirst and peeing. I'm not sure why but I've never had ketones either, though I've not been tested much for those. In fact I can drink loads of fluids and never know where it's going, because it doesn't come out again (TMI, I know 😱 ).

I really don't know how much longer I can go on like this. I have yet another doctor's appointment on Wednesday at which I will make myself deeply unpopular by asking (again) how they're progrressing with their attempts to get me appointment to see the specialists. It's been over a year and I had hoped to be 'under control' (does that condition actually exist or is it a myth?) by now. Nothing I do seems to work and the 1.5 diagnosis just complicates things even more as I no longer know what I'm supposed to do. I feel really low and tired, and I can't shake this cough. I just feel like crying.

I have the office to myself most of today so at least I don't have to act as if everything's fine.
 
Urgh. Sounds horrible Alison :(

Sorry... I can't remember, have you had a c-peptide test (is that the one to test whether your beta cells in the pancreas are still doing their bit?)

M
 
everydayupsanddowns said:
Urgh. Sounds horrible Alison :(

Sorry... I can't remember, have you had a c-peptide test (is that the one to test whether your beta cells in the pancreas are still doing their bit?)

M
Click to expand...

I did, about earlier this year, that's when they decided I was a 1.5 and not a 2 as they did the antibody test at the same time (GAD?). It seems things have degenerated much faster than expected and I'm in limbo while the NHS gets it's act together and puts me on insulin.
 
i think its time you putm ypur foot down with your gp and told him to get that appoiment you should not be waiting this long how can they expect you to have good control when you dont see a consultant at all especilly if you are a 1.5. Good luck and keep us posted as to how you are doing
take care
gail
 
Good luck with the doctors. I hope you feel better soon. This D lark is a pain in what we sit on!
 
Alison, it's clear that you really need to get on the right regime, which from my thoughts would be insulin. As you say, it's pointless taking meds to stimulate insulin production if your beta cells can't oblige. Whatever meds you take it's not going to work without insulin coming from somewhere. Hoep you can finally get somewhere with the docs/specialists, because this is getting ridiculous. They know you're not Type 2, and basically they've exhausted whatever strength your pancreas has remaining - these things don't work to their schedule. So angry for you that you have had to go through all this! 😡
 
AlisonM said:
Sorry, but all I seem to do these days is complain about how awful I feel and that's what this post is about too.

My numbers have been running in the low to mid teens all weekend and my feet are killing me, plus I'm not sleeping much. I'm not hungry (although I do eat because I know I must), I've taken to making a flask of soup and just having small amounts regularly. The pills I'm on now don't seem to be helping and I'm still waiting to see the consultant. My main worry now is the meds I'm on are meant to 'trick' the body into making more insulin... which only works if my body can make the stuff in the first place... judging by my readings, mine can't make enough. I was doing a workshop yesterday for administrators in the Voluntary Sector and I really struggled to get through the day, by the end I was exhausted and was in bed by 7pm, not that I got much sleep, I just lay there in a dwam (nice Scots word that, means dazed and confused, or not all there, like out to lunch).

The only symptoms I don't have (and never have had) are thirst and peeing. I'm not sure why but I've never had ketones either, though I've not been tested much for those. In fact I can drink loads of fluids and never know where it's going, because it doesn't come out again (TMI, I know 😱 ).

I really don't know how much longer I can go on like this. I have yet another doctor's appointment on Wednesday at which I will make myself deeply unpopular by asking (again) how they're progrressing with their attempts to get me appointment to see the specialists. It's been over a year and I had hoped to be 'under control' (does that condition actually exist or is it a myth?) by now. Nothing I do seems to work and the 1.5 diagnosis just complicates things even more as I no longer know what I'm supposed to do. I feel really low and tired, and I can't shake this cough. I just feel like crying.

I have the office to myself most of today so at least I don't have to act as if everything's fine.
Click to expand...

So sorry Alison, have you been to see your doctor about your symptoms? I really hope you start to feel better soon. Keep your chin up, take care Sheenax
 
Catwoman76 said:
So sorry Alison, have you been to see your doctor about your symptoms? I really hope you start to feel better soon. Keep your chin up, take care Sheenax
Click to expand...

Doctor's again this afternoon. I've written everything down. I would say "I have a little list" (with thanks to Gilbert & Sullivan), but it isn't little!
 
AlisonM said:
Doctor's again this afternoon. I've written everything down. I would say "I have a little list" (with thanks to Gilbert & Sullivan), but it isn't little!
Click to expand...

Good luck with it Alison - I really hope you can get something sorted! 🙂
 
OK, had the appointment. The doctors called to talk to a consultant while I was there and the decision is they will arrange a c-peptide test as soon as they can (they have staff shortages - I wonder why?) and in the meantime the dosages for my meds have been doubled as the consultant wondered why I was on such low amounts (1x40mg Sitagliptin, now 2x40mg and 2x80mg Gliclazide, now 4x80mg) given the problems I'm having. She said that it might be possible to defer a move to insulin by getting the dosage right - always supposing the c=peptide test proves that's a possibility. As I've said, these pills only work if my pancreas can make insulin in the first place. I'll be happier once I have the answer to that question.

They also did a sensitivity test and reckon the pains in my feet and hands are Rheumatoid Arthritis and not Transient Neuropathy. Oh joy! They've doubled the dose of anti-inflammatories too.
 
Hope they don't take too long over getting the test done Alison. As you say, I suppose the drugs are only going to work if you are producing insulin. I must admit, I'm surprised at this approach of 'milking' your pancreas with the drugs. There seems to me to be a lot of logic in the theory that administering insulin - maybe just a slow-acting for now - would give your pancreas a 'rest', rather than stressing it further. Hope that, whatever happens, the extra drugs give you some relief from all the symptoms and high levels. 🙂
 
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