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Still classed as Diabetic

S

SAH154

Well-Known Member
Messages
74
Hi all am new on here :D

I have had Type 1 diabetes since 01/1992 I had a pancreas transplant 01/2012 and no longer take insulin does anyone know if 'officially' I'm still classed as being Diabetic? As on forms you often get asked this and also for medical exemption purposes for prescription charges.

I've asked several consultants and most think you are but despite the aid of google couldn't find any definitions of post transplant status

cheers
 
No idea, maybe that's something that Diabetes UK, the charity (not this forum) might be able to help with.
 
Hi
I had a Pancreas only Transplant in 1997,(no longer on Insulin) as well as taking drugs for my transplant I also take Thyroxine for an underactive Thyroid so I am still entitled to a Prescription exemption certificate. I think you will have to start paying for your precriptions, unless you are on some kinds of State Benefits or have another medical condition that is listed in the Prescription exemption list. You might want to check NHS Choices or Direct.Gov.UK websites.
I am still seen at the Diabetic clinic every 6-12 months as I still have Diabetic complications.
Hope this helps............

PS As for forms I would still put Diabetic, especially for things like travel insurance.
 
phoenix said:
No idea, maybe that's something that Diabetes UK, the charity (not this forum) might be able to help with.
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Definitely where I'd start and I wish you well on finding the answer.
 
TopoGigi said:
Hi
I had a Pancreas only Transplant in 1997,(no longer on Insulin) as well as taking drugs for my transplant I also take Thyroxine for an underactive Thyroid so I am still entitled to a Prescription exemption certificate. I think you will have to start paying for your precriptions, unless you are on some kinds of State Benefits or have another medical condition that is listed in the Prescription exemption list. You might want to check NHS Choices or Direct.Gov.UK websites.
I am still seen at the Diabetic clinic every 6-12 months as I still have Diabetic complications.
Hope this helps............

PS As for forms I would still put Diabetic, especially for things like travel insurance.
Click to expand...

Crikey that's a long time the average is 8 years for them to last.

The best answer I had from a consultant was 'you are still diabetic as your pancreas does not produce any insulin and your treatment is the transplant

I've been on the NHS/Direct.Gov websites but was unable to find any information it wil be interesting to see something in print'
 
noblehead said:
phoenix said:
No idea, maybe that's something that Diabetes UK, the charity (not this forum) might be able to help with.
Click to expand...


Definitely where I'd start and I wish you well on finding the answer.
Click to expand...

OK i have emailed them and will await an answer - until I see something definitive n writing I'll still class myself as Type 1 as without the transplant I would take insulin
 
ishjohno said:
Hope you don't mind but may I ask SAH154 and TopoGigi how you were able to get your Pancreas Transplants?
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It's not easy at all - you need a referral to a transplant unit - mine was more meeting the right people at the right time in the right place I think the UK does less than 200pa

http://www.nhs.uk/conditions/pancreastransplant/Pages/Introduction.aspx
 
Hi

I found article about prescription exemption on "NHS Choices" website Help with NHS health costs lists all the details you might need

Phone 0845 601 8076 for queries about medical exemption certificates.

Good luck.

I had my Transplant in 1997 again I was lucky that I too met the right people, at a time when they had just started doing Pancreas only transplants in the UK.
 
IMHO you are no longer diabetic because you have a functioning pancreas.
Really, you can't be T1 if you take no medication for insulin control.

However I also assume that you will be on long term anti-rejection drugs so presumably you will have an exemption for these.

Not being classed as a T1 should improve your status if you want to drive.
 
ishjohno said:
Thanks SAH154 :)
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Mine went like this

Asked Diabetic consultant how long I'd got left with my kidneys before that failed.
He referred me to a kidney specialist who came to see me at my local hosp - he said although they were below normal they still had fair bit left in them, he then mentioned a possible transplant and as his unit weren't allowed to do pancreas (NHS politics they can do kidney, Liver etc)he referred me elsewhere
I went to see the pancreas transplant team and they took down lots of info and I had to have loads of tests done most local to me.
I was then called in an interviewed and this info along with everything else was put to the transplant panel and I was on the list and less than 6 months later of being on the list I had my operation after several false alarms (fatty organ, organ stuck in bad weather etc)

I guess if you think you would benefit from one you need to speak to your diabetic consultant as first port of call - TBH they do so few per year I was amazed that mine actually went ahead
 
Saw my GP today for a fit note and asked the question - 'You are still marked on the system as T1D and we will not be removing the marker
 
LittleGreyCat said:
IMHO you are no longer diabetic because you have a functioning pancreas.
Really, you can't be T1 if you take no medication for insulin control.

However I also assume that you will be on long term anti-rejection drugs so presumably you will have an exemption for these.

Not being classed as a T1 should improve your status if you want to drive.
Click to expand...

I still have my old pancreas as that does what it should in relation to digestion as they don't remove it for obvious reasons - my 2nd pancreas is plumbed into my bladder

You don't get exemption for anti rejection drugs so a liver TX patient would not get free prescriptions bit unfair really
 
SAH154 said:
Saw my GP today for a fit note and asked the question - 'You are still marked on the system as T1D and we will not be removing the marker
Click to expand...


I thought as much, how do you feel about this?
 
noblehead said:
SAH154 said:
Saw my GP today for a fit note and asked the question - 'You are still marked on the system as T1D and we will not be removing the marker
Click to expand...


I thought as much, how do you feel about this?
Click to expand...


It's the truth my original pancreas doesn't produce insulin and my transplant one leaves me in a position of having to go back on insulin if it is rejected - I do feel better that someone on here has had pancreas only 14years and still going strong 8)

So I'll still put it down on any forms that ask (which is quite a few these days)

I'm just truly thankful I was able to even have a transplant :D
 
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