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Frustrated with diagnosis

hisjen84

Well-Known Member
Messages
73
Type of diabetes
Other
Treatment type
Tablets (oral)
i was diagnosed on the 1st of March with diabetes. My blood sugar was 25 hba1c 15% and my bmi 18. I saw a nurse at the hospital who ruled out type 1. After discussing family history I was told they thought it was mody. I had bloods sent to Exeter and given gliclazide and told I need to see a specialist within 4 weeks.
I have just had my hsopital appointment cancelled for the 3rd time I haven't yet l been told my blood results or seen a doctor and now I'm struggling to keep my blood sugar up increasingly recently. If I go to my gp or nurse they tell me they know very little about mody.
If feel completely in the dark as to what type I have and if I am on the correct medication
 
I appreciate (from my own experience) that this must be extremely frustrating for you @hisjen84 , but some blood tests do take longer than others and they may be waiting for all the results before seeing you. I am not clear though on how long it's been since your first hospital appointment?

Gliclazide can be responsible for hypo's so it's worth talking to your doc about your dosing if you're feeling uncomfortable with low glucose levels. I am thinking here of a discussion specifically about your medication rather than diabetes in general.
 
I was asked to go to the hospital on the 1st of March which is when I was told I had diabetes and had my blood taken. I was told I needed to see a specialist within 4 weeks regardless of whether my test results are back. I have yet to see the specialist or a doctor
 

OK, sorry, I thought perhaps that you'd been to the hospital since the 1st March. In that case you really ought to have your results, or be getting them very soon. There's a slim possibility that the hospital will have notified your GP - might be worth a phone call?
 
Have you tried contacting the diabetic specialist nurse team at the hospital? They should be able to help with the Gliclazide dose and let you know a time frame for an appointment with the consultant and/or let you know the results of the tests if they are available.
 
I keep getting my appointment then a letter saying due to alterations at the clinic your appointment has been rescheduled it's happened 3 times now which is frustrating as I arrange the time off work.
That's a good idea to ring the diabetic nurse team I will ring them tomorrow. I am quite anxious to get my results but like I mentioned I want to get my dosage sorted as I don't think it's correct. Thanks for the help!
 

That happened to me once. When they cancelled the third appointment, I phoned the hospital and spoke to the consultant's secretary, telling them it wasn't acceptable and I needed to be seen. They then reinstated my third appointment.

It's sad but sometimes you have to push. Your appointments could be being cancelled by someone who has no idea that you need to be seen. Phone the consultant's secretary, say you should have been seen and you're struggling.

Don't be afraid to be politely pushy and stand firm.

As for your results, I suggest phoning your GP. Don't accept a 'They're fine" or whatever. Ask for them to be read out to you or copied to you, and if the person you're talking to doesn't understand them, ask to speak to someone who does.
 
Thankyou. It really helps hearing you say this because I was starting to think I was over reacting and was prepared to wait for my next appointment but I'm going to push for my appointment. I've been prepared for it for a few weeks so was really deflated when it was cancelled again. I feel like I'm just stuck in limbo I've been diagnosed to a degree and then nothing!
 
Definitely push. Mine were being cancelled because they were overbooking the clinics. The first person I spoke to said "Someone has to be moved [to the next clinic]" and I said "Ok - but why does it always have to be me?" I then told them I needed to be seen and already had had two appointments cancelled.

Unless there's a staffing emergency or something, they shouldn't mess you round like that.

Let us know how you get on - and good luck
 
Thanks I will keep you updated!
 
hi there @hisjen84
contacting the people who are meant to be looking after your care is not being pushy
( if you don't look after you nobody else is going to do it )

so push push push away and try to get seen as soon as you can.
you've waited long enough

all the best !
 
Contact the PALS team and ask why you are getting numerous appointments can elled a d explain that you would also like to lnow your blood results.

They have to actiona complaint and you won't be treated worse...
 
Well I have spoken to the hospital who told me had to wait until June and after a bit of arguing I am going in Thursday but told I can't see the mody specialist. I then took your advice and phone the diabetic nurse I know who said this particular dr does want to see me and is going to arrange something for me! Thank you for your help
 
well done !!
do let us know how you get on at hospital !!
 
I will thanks!


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Yes well done. Keep in contact.
 
Well done! I know it's not easy being pushy but it sounds like you did really well.
 
After finally seeing my specialist I have an official diagnosis. Transient neonatal/later adult onset. I've been told this affects about 1 in 500,000 so quite rare I just relieved to have an answer!


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hisjen84, I'm pleased you've finally got a diagnosis. Is the treatment and control different from the usual classifications of T1, T1.5, T2 ?


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They gave me insulin to begin with to control my blood sugar levels and I am now just on gliclazide to help me produce insulin. It apparently can become insulin dependant but that could be a few years down the line or 10 years down the line. They also told me my mum is not type 2 and will definitely have the same type, she is being referred for genetic testing
 
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