waiting for appointment

[fruitloaf]

Well thought I'd update with y progress since being diagnosed a month ago. I have been monitoring my glucose using a meter and fasting glucose is usually 10-14, non fasting glucose 18-Hi, had quite a few Hi readings at bed time over the last week.

I have just increased the metformin dose to 1500mg per day but still it doesn't seem to be making any difference, if anything my glucose readings are increasing!

My GP said she would refer me to the diabetology consultant and local hospital, after 3 weeks with no letter I phoned the hospital to find that they had never received the referral. Phoned GP surgery and got them to fax the letter, phoned hospital to check they'd got it etc... Letter arrived last week and I have an appointment in 2 weeks time (6 weeks from diagnosis).

Feeling really down about it all as I am really tired all the time and have stopped being shocked by my high glucose readings as they just seem 'normal' for me now, anything below 15 feels good! I went back to my GP about 2 weeks ago but she just said to wait for my appointment at the hospital and see what the consultant says.

sorry to be so negative, I just feel frustrated that I'm having to wait so long to be seen by someone who can answer my questions and get me on the right treatment.

 

[Northerner]

Hi fruitloaf, so sorry to hear that you have been suffering such high levels, no wonder you are feeling down about it all I am really appalled at some of the poor care and attention so many of the forum members appear to be getting from the so-called healthcare professionals! It's clear that the metformin isn't enough to get your numbers anywhere near reasonable, and those 'His' are particularly awful. Your doctor should not be leaving you to cope like this - I am certain he would not do so if it was him or a member of his family. When you are feeling up to it, I think you should write a letter of complaint to your PCT about the delays - it really is not good enough!

I can only suggest that you try to keep your carbohydrate intake to a minimum - this should help keep your levels lower until you can be seen by someone who can tell you what's going on. It sounds very much to me like you should be on insulin.

Hoping you get some relief and proper treatment soon 🙂

 

[fruitloaf]

thanks Northener, I have noticed that some foods seem to increase my blood sugar significantly, apple and blackberry crumble being one of the worst offenders - will have to avoid them for a while
Also I used to drink a lot of orange juice which I've stopped doing now. I don't like the taste of squash type drinks so have started drinking very dilute elderflower cordial which I really like although isn't completely sugar free.

 

[Northerner]

thanks Northener, I have noticed that some foods seem to increase my blood sugar significantly, apple and blackberry crumble being one of the worst offenders - will have to avoid them for a while
Also I used to drink a lot of orange juice which I've stopped doing now. I don't like the taste of squash type drinks so have started drinking very dilute elderflower cordial which I really like although isn't completely sugar free.

I miss my orange juice too! I'm also like you - never been a fan of squashes or fizzy drinks, so am a bit limited when I'm thirsty! I used to drink a lot of milk, but now I'd have to inject for it Now I just tend to drink tea or water, and the occasional beer!

I should imagine that the A+B crumble would have quite a lot of carbs in it, probably best to stick to low sugar stuff until they can decide on a treatment regime that will actually help get your blood sugar levels down to something half-reasonable. Grr! I want to come round and give that doctor a really good talking to!

 

[fruitloaf]

Today I tried numerous times to have my appointment brought forward, phoned the diabetes nurse who was only able to give me lifestyle and dietary advice. As I haven't been seen at the hospital before she couldn't prioritise my appointment but she thought that the consultant's sec could! I felt slightly uncomfortable trying to explain to the sec why I needed to be seen quickly because she obviously wasn't able to give me any advice and told me there were no other appointments available.
I then made an urgent appointment with my GP and decided that if she wasn't able to do anything then I would go to A and E. Thankfully my GP sought advice from the hospital diabetology consultant who said I was on the wrong medication (should be on glitazide rather than metformin) and agreed to see me in clinic tomorrow.
I am so relieved as I've been really stressed about it all over the last few days and felt in limbo between my GP who wasn't able to help me and a hospital appointment that I had to wait several weeks for.

So my advice to anyone waiting for appointments is to always persevere and keep pestering people. I made the mistake in the first few weeks after diagnosis of not wanting to be a difficult patient and not being assertive enough in seeking an expert opinion. Over the past week I've had to do all the chasing myself and be proactive about it and I'm finally making progress 🙂

 

[shiv]

fruitloaf - glad to hear you are making progress! I totally agree - if you're not getting the care you need, stamp your feet and shout until you get it!

 

[Northerner]

Hi fruitloaf, that's great news! I hope the appointment goes well. 🙂 I'm afraid it seems to be very true - you need to be persistent in order to get the care you need. I've had pretty good care since diagnosis, yet there have still been times when I've had to stand my ground.

 

[Copepod]

Fruitloaf - Glad to hear that you're making progress. Your GP was helpfully proactive in phoning diabetologist.
Unfortunately, a wait of a few weeks is fairly normal for a first appointment - perhaps even more usual during summer holiday period. Most clinics are more flexible once you're on their books, with access to nurses by phone / email / drop in clinics. I have my consultant's email, too, which is helpful eg to let her know my DVLA enquiry form is on its way to her. I only go for an annual review, usually in late Sept, date given at the appointment. However, around May I realised I would be at a work training course in a city 150 miles away, on the appointment date, so contacted and asked for a new date - they were able to give me a new appointment the following week, but said that was the last available slot for weeks. I don't blame the clinic staff for needing to take time off for their own holidays or training courses, but I do get frustrated at other patients who fail to attend for appointments, using slots that could be used by others.