Help/advice would be very appreciated

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AJLang

AJLang

Well-Known Member
Relationship to Diabetes
Type 1
I'm usually really cheerful and positive about diabetes but now that I've got some additional problems I'm not sure where to go for advice - any help/advice would be really appreciated
Earlier this year my blood sugars went completely and totally erratic - nothing made sense. Alongside this I keep feeling very nauseous and bloated and generally didn't feel very well - this led to yet another bout of illness away from work - my diabetes consultant sent me for a scan which has shown that I have gastroparesis but I haven't been given a follow up ap
pointment or told what I need to do - I phoned the diabetic nurse at the hospital and she said, quite abruptly "I don't know either" and that I should speak to the consultant's secretary..........

I lost part of my sight in my left eye last summer due to a retinal vein occlusion - I was told by eye consultant in February that if the other eye goes "I'm stuffed" and now I need to see the diabetic specialist consultant because of something they've foudn in my routine retinal photo (this is in addition to me being under another eye consultant)


On top of this I've had MUA on a frozen shoulder in November but even with regular exercising it still flares up accompanied by problems from my neck (cervical spondolytis)


I'm now getting rather scared about what is going to happen and worried about being able to stay independent and working - thankfully my employers have been wonderfully supportive

sorry that I sound so fed up - just having a bad day........
 
first of all - welcome to the forum. this is definitely the place for you if you need to let all that stuff out!

sorry to hear that you are feeling so fed up. have you been able to get an appointment with any of your team?
 
shiv said:
first of all - welcome to the forum. this is definitely the place for you if you need to let all that stuff out!

sorry to hear that you are feeling so fed up. have you been able to get an appointment with any of your team?
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Thanks Shiv but I'm not sure who to make an appointment with. I had been speaking to the DSNs at the hospital about my chaotic blood sugars and followed their advice for four weeks but this did not help. They were meant to call me back and haven't and as far as I can work out don't know what advice to give if the problems are caused by gastroparesis. My diabetic consultant said that my next appointment would be in a year. He did say that if the gastroparesis was confirmed then I would be referred to another consultant but I've heard nothing about this yet. My GP increased the domperidone but didn't provide any other advice. I've made an appointment to see the DSN at my surgery but that's not until the middle of next week.

The appointment with the specialist diabetic eye consultant is next Tuesday.
 
Hi, welcome to the forum🙂 Very sorry to hear of the problems you are experiencing, and dismayed to hear of the lack of information provided by your healthcare team - I wonder how they would feel if it was them? :(

The stress of not knowing what is happening or what you can do must be something very difficult to endure on top of everything else. I think you need to press whoever it was that arranged the gastroparesis test and get an answer, or at least a date when you will know. Once you have a date, you may feel less in the dark about things. This page seems quite useful for explaining gastroparesis and possible causes and treatments. It does seem as though your symptoms might suggest it, but of course there may be other causes. http://digestive.niddk.nih.gov/ddiseases/pubs/gastroparesis/

How long have you been diagnosed? I hope that you are able to find some relief for the problems soon.
 
AJLang said:
I'm usually really cheerful and positive about diabetes but now that I've got some additional problems I'm not sure where to go for advice - any help/advice would be really appreciated
Earlier this year my blood sugars went completely and totally erratic - nothing made sense. Alongside this I keep feeling very nauseous and bloated and generally didn't feel very well - this led to yet another bout of illness away from work - my diabetes consultant sent me for a scan which has shown that I have gastroparesis but I haven't been given a follow up ap
pointment or told what I need to do - I phoned the diabetic nurse at the hospital and she said, quite abruptly "I don't know either" and that I should speak to the consultant's secretary..........

I lost part of my sight in my left eye last summer due to a retinal vein occlusion - I was told by eye consultant in February that if the other eye goes "I'm stuffed" and now I need to see the diabetic specialist consultant because of something they've foudn in my routine retinal photo (this is in addition to me being under another eye consultant)


On top of this I've had MUA on a frozen shoulder in November but even with regular exercising it still flares up accompanied by problems from my neck (cervical spondolytis)


I'm now getting rather scared about what is going to happen and worried about being able to stay independent and working - thankfully my employers have been wonderfully supportive

sorry that I sound so fed up - just having a bad day........
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Hi, welcome to the forum.

Sorry to hear about your gastroparesis diagnosis, unfortunately diabetes is usually the most common cause of it. I'm not sure what can be done to alleviate the symptoms.

I sympathise with you though as I've suffered from colitis for 30 years and know how debilitating and depressing gastro intestinal disorders can be.

Hope the doctors can come up with something to help.

All the best

Phil
 
Hi Northener and Phil

Thanks very much for your replies. In one way it is helpful that the gastroparesis was confirmed from the gastric emptying scan - at least I know what the condition is that is making me feel so lousy. But on the otherhand having the diagnosis but no proper care apart from a prescription of domperidone hasn't helped, it has made me feel very abandoned. Particularly when the eye consultants are really worried about the effect of the blood sugars on my eye conditions (and with this now seeming to be worse with next week's appointment. Thanks very much for the link that you've given me Northerner. I am trying to do what I can - more blood tests, more injections,lighter meals - but just as I get on top of the high sugars then they start crashing down with absolutely no reason apart from the gastroparesis. Some days I feel fine as long as I do lots of testing/injections/tablets etc but even with this every second or third I feel so nauseous etc and my blood sugars will just swing

I phoned the diabetic consultant's secretary a little earlier - she was really helpful and understanding. As soon as my records are available after next week's appointment at the eye department she is going to get them and ask my diabetic consultant if he will refer me to someone who specialises in diabetics with gastroparesis (he did mention this when I last saw him but no other mention was made of it after the diagnosis).
Maybe my body has just decided to give me a hard time as it leads into the 40th anniversary of having diabetes...........just keeping fingers crossed that it then improves and that next week's eye appointment isn't too bad!
 
AJLang said:
...I phoned the diabetic consultant's secretary a little earlier - she was really helpful and understanding. As soon as my records are available after next week's appointment at the eye department she is going to get them and ask my diabetic consultant if he will refer me to someone who specialises in diabetics with gastroparesis (he did mention this when I last saw him but no other mention was made of it after the diagnosis).
Maybe my body has just decided to give me a hard time as it leads into the 40th anniversary of having diabetes...........just keeping fingers crossed that it then improves and that next week's eye appointment isn't too bad!
Click to expand...

Ah, a little progress then - I hope that you get the referral soon, and that the eye appointment brings better news 🙂 We have several members here who have been diagnosed for 30 or 40 years. Has your control normally been good? I wonder if pumping would help as you would then have finer control over how much insulin you administer and when which might help to stabilise your levels more. Good luck for next week, please let us know how things go.
 
Hi Northerner

My control has never been brilliant but to quote the consultant for the past 5 years it has been stable and now it is chaotic - the HBA1C "only" went up to 8.0 but it is the swinging sugars that are part of the problem - and because the food digestion is so unpredictable sometimes my background insulin works and other times it gives me a very sudden low sugar when I haven't had any humalog for several hours. The hospital hasn't mentioned a pump that's why I'm hoping that the referral might help.

Chaotic blood sugars are difficult with my job but I'm determiend to make things work well - just days like today when it's really difficult when it's combined with the other problems...but I'm trying to stay positive😱
 
It sounds like a pump would give you more control so that you could react quickly to the swings. Perhaps they haven't mentioned it because of the expense, so it might be worth you mentioning it first. I'd suggest talking to John Davis at Input ( http://www.input.me.uk/ ) and see what he says - he's very good at responding if you email him. He'll probably know of your PCT's attitude to pumping and if there might be an alternative.

Just from reading your posts it is obvious that you are trying to be positive, so I hope that you can get things sorted soon 🙂
 
It has been a challenge the past few months as I've waited to see the diabetes gastroparesis specialist. I knew that something was wrong when the GP looked at the results of my gastric emptying test and then went very quiet - she then checked with me that I was definitely being referred to the right specialist. I then got told by another doctor (whom I was seeing for something else) that the results were significant and that I could be facing being fed through a tube into my bowel and an operation so that food bypassed my stomach. All very, very scary but fortunately after months of trying changes to my diet and different medications there has been a great improvement in my diabetes (my HBA1C went down to 7.2) but there are still a number of problems. I saw the diabetes gastroparesis specialist on Monday, she has explained that I have a severe form, and has put me on another medication - touch would although this could have bad side effects so far it is working well and the diabetes control is getting even better!! So although there are problems it's moving in a positive direction.....🙄
 
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