hello

[taibhsela]

Hi,

When I was 18 I was diagnosed as suffering from hypoglycemic attacks on a fairly regular basis, until ten years later I was diagnosed as a type 2 diabetic and placed on metformin. A year after that I was taken off of metformin and have for last ten years managed my diabetes through diet and exercise alone.

Recently I've begun having problems and after visiting the gp they've discovered and old letter in my medical files from ten years ago suggesting I might be a mody diabetic and should be tested for it.

However my gp seems to be ignoring it and I have no idea if it matters or not, or what the practical difference is.

Anyway, hello, nice to meet you.

 

[Drummer]

If you are MODY then your doctor's attitude could mean that you get a ride in an ambulance.
I think that the initials stand for mature onset diabetes of the young - or something similar, meaning that you gradually lose the ability to produce insulin, so DKA is a possibility with high glucose and high ketones.
I would be pointing out the changes and problems you are having and asking why the information in your notes is being ignored - but also look up the symptoms of DKA and if they begin to appear then contacting 111 or even 999 would be safest.

 

[taibhsela]

Alright Drummer, cheers for the reply.

The doctor's attitude has been pretty poor right from the start and left me feeling like I was wasting his time, and has me questioning my own judgement on this. After all he's the doctor...

But like I said, for ten years my bloods have been fine for all that time until recently I started getting pain in both my hands. A collection of burning, numbness, pins and needles, and a loss of feeling in the fingers.

He suggested this was probably peripheral neuropathy and since I had an end of year diabetic review in the 3 months time, to wait and tell them.

The end of year review is handled by the practise nurse, who after testing my bloods said she wasn't comfortable handling this and suggested it needed to be handled by the diabetic clinic. It was also the nurse who noticed the letter about mody in my notes.

However, as it's a 42 week waiting list to get an appointment I would need to see the doctor again. By that point four months have gone by with nothing really being done.

Since then I've seen three locums and now back to that original doctor, with the only thing being done, is the same blood tests over and over again and being told to take paracetamol for the pain which hasn't helped in the slightest.

It's now seven months since that first appointment and I'm in constant agony, tired from lack of sleep, and confused by the actions of these doctors. So, hearing from someone else that is an issue really helps, I've been kind of depressed recently and it's much appreciated, cheers.

 

[Flower]

Hello and welcome taibhsela

This information from the Diabetes UK site explains MODY diabetes and the different types. https://www.diabetes.org.uk/diabetes-the-basics/other-types-of-diabetes/mody it also explains the need for a correct diagnosis.

In light of the letter on file presumably someone at that time considered you may have it . Ask for the name of the consultant/clinic you have been referred to and ring their Secretary to ask for an appointment asap. 42 weeks is a very long time for an initial appointment and I would keep on at your surgery until something is sorted. It can be hard work to do this but you do need to know that you have been correctly diagnosed and as MODY is rare it sounds a possibility it could have been overlooked. Best Wishes.

 

[stephknits]

Hi and welcome. MODY is a very rare form of diabetes that is genetic. There are several different types, based on different faulty genes. They can test for it, I believe the test isn't cheap, so maybe an influencing factor. If you are MODY you do not necessarily need insulin, in fact I understand most diagnosed don't take insulin.
It is good to get your questions answered, so worth pursuing.
Do you test your blood sugar at home? If not, might be worth doing do to get a clearer picture of what is going on.

 

[SueEK]

Hi,

When I was 18 I was diagnosed as suffering from hypoglycemic attacks on a fairly regular basis, until ten years later I was diagnosed as a type 2 diabetic and placed on metformin. A year after that I was taken off of metformin and have for last ten years managed my diabetes through diet and exercise alone.

Recently I've begun having problems and after visiting the gp they've discovered and old letter in my medical files from ten years ago suggesting I might be a mody diabetic and should be tested for it.

However my gp seems to be ignoring it and I have no idea if it matters or not, or what the practical difference is.

Anyway, hello, nice to meet you.

Hi, I can’t offer advice on your diabetes as very new to all this; however I do work as a medical secretary for 11 GPs and would advise that you constantly bother them - make appts, ring and leave messages, put your concerns in writing and copy in the Practice Manager. GPs are so incredibly busy, a lot of which is never seen by the public that sometimes you need to ‘get in their face’ to show how concerned you are. I know you really shouldn’t have to do that but I would in your shoes. Hope this may be of some help and best wishes to you.

 

[taibhsela]

Hi,

I just want to say a big thanks to everybody. It's easy to feel a little lost when stuff like this happens, but I already feel a bit better about it all and more determined to see it through.

It's a simple thing, a few words of encouragement, but it makes a massive difference, especially when you've been dealing with it on your own.

Thank you.

 

[SB2015]

Hi,

I just want to say a big thanks to everybody. It's easy to feel a little lost when stuff like this happens, but I already feel a bit better about it all and more determined to see it through.

It's a simple thing, a few words of encouragement, but it makes a massive difference, especially when you've been dealing with it on your own.

Thank you.

Just to bring this thread back to the original poster, do feel free to ask any questions that you have. We are here to help in any way we can.

 

[TheClockworkDodo]

Hello @taibhsela and welcome 🙂

I would definitely keep going back and pestering the people in your surgery if I were you - it might be worth making another appointment to see the nurse, as it sounds as though she is more helpful than the doctors - you could ask if she could help with getting them to take you seriously and/or with getting you a more rapid referral to the hospital diabetes clinic, in view of your symptoms. She will probably have details of the hospital diabetes specialist nurses and might be able to contact them on your behalf. If you're MODY you need to see a specialist, as a GP is likely to be pretty clueless about it - as you've discovered.

I'm going to tag @Stitch147 as she has MODY and might be able to give you more information and advice about it. It took her ages to get an accurate diagnosis too.

 

[Stitch147]

Hi and welcome to the forum. I am strongly suspected to be MODY (maturity onset diabetes of the young). I haven't had the genetic testing done as it's not cheap, so gp's are reluctant to do it. I have spoken to specialists at my local hospital and at Exeter (see link below) and they all believe me to be MODY, due to how my diabetes presented (I had no symptoms), how I reacted to different medications and my family history of diabetes. Check out the website below as there is a lot more info about MODY.
https://www.diabetesgenes.org