Please create a MODY discussion thread

[steveelles]

After 5 years on Metformin and Sitaglyptin/aloglyptin (vomiting violently 3 or 4 times a week) and constantly telling various GPs that there is a problem I finally gave up on the NHS and paid for a private consultation with an endocrinologist. That was only after I took myself of all my meds and waited for my HBA1c to climb to 93. All that just to prove a point. I was right all along, I am not Type 2 - never was. I am currently under investigation for HNF1A (Mody 3) or early slow progressive Type 1. I would like to discuss my experience with other MODYs. I have been regularly visiting various GPs my entire life complaining of what were obviously secondary symptoms rather than primary. Dogmatism has no place in the identification and treatment of diabetes.

 

[Juicyj]

Hello @steveelles

Thanks for your post, i'm flagging this to other moderators for discussion, I appreciate where you are now that you need to speak to others to learn more and share experiences so it will certainly be given consideration.

Best wishes J

 

[Mr_Pot]

That was only after I took myself of all my meds and waited for my HBA1c to climb to 93. All that just to prove a point. I was right all along, I am not Type 2 - never was.

I didn't understand that bit, wouldn't a Type 2 who stopped taking medication have a raised Hba1c?

 

[Juicyj]

Hello @steveelles Can you please confirm for us - are you looking for a new Sub Section for MODY or just simply wish to discuss MODY on a thread with other MODY members, just for clarification, thanks

 

[steveelles]

Hello @steveelles Can you please confirm for us - are you looking for a new Sub Section for MODY or just simply wish to discuss MODY on a thread with other MODY members, just for clarification, thanks

Hi there. I think on a thread with other MODYs would be great but I will still continue to discuss more broadly on other threads. Thanks

 

[Juicyj]

Hi there. I think on a thread with other MODYs would be great but I will still continue to discuss more broadly on other threads. Thanks

That sounds like a good plan, other MODYs will spot it fairly easily too

 

[steveelles]

I didn't understand that bit, wouldn't a Type 2 who stopped taking medication have a raised Hba1c?

Appologies. More detail here: My GP had refused to refer me to the Blackburn Diabetes Centre despite me being under the Bolton Diabetes Centre when I registered with him. His reason was because my HBA1Cs were good. However, it was self testing that revealed a fasting of 32.2 which was contradictory to the HBA1C. I had to use data to get the care I needed. I took myself off my meds to trigger a referral. I also needed a referral for my private appointment because NHS diagnosis procedure does not facilitate the required tests. A shame that I had to take a self destructive route.

 

[Mr_Pot]

Appologies. More detail here: My GP had refused to refer me to the Blackburn Diabetes Centre despite me being under the Bolton Diabetes Centre when I registered with him. His reason was because my HBA1Cs were good. However, it was self testing that revealed a fasting of 32.2 which was contradictory to the HBA1C. I had to use data to get the care I needed. I took myself off my meds to trigger a referral. I also needed a referral for my private appointment because NHS diagnosis procedure does not facilitate the required tests. A shame that I had to take a self destructive route.

Thanks, I understand now. The only things I know about MODY are that it is very rare and genetic. Do you have any relatives with MODY?

 

[Brunneria]

Appologies. More detail here: My GP had refused to refer me to the Blackburn Diabetes Centre despite me being under the Bolton Diabetes Centre when I registered with him. His reason was because my HBA1Cs were good. However, it was self testing that revealed a fasting of 32.2 which was contradictory to the HBA1C. I had to use data to get the care I needed. I took myself off my meds to trigger a referral. I also needed a referral for my private appointment because NHS diagnosis procedure does not facilitate the required tests. A shame that I had to take a self destructive route.

How frustrating that you had to take such steps!

I don't know what the outcome of your MODY subforum request will be, but we have had a few MODY threads over the years. You may find them interesting.

If you type MODY into the SEARCH box, top right of the screen, and search on Thread Title, you will see a whole list of threads.

 

[SB.25]

After 5 years on Metformin and Sitaglyptin/aloglyptin (vomiting violently 3 or 4 times a week) and constantly telling various GPs that there is a problem I finally gave up on the NHS and paid for a private consultation with an endocrinologist. That was only after I took myself of all my meds and waited for my HBA1c to climb to 93. All that just to prove a point. I was right all along, I am not Type 2 - never was. I am currently under investigation for HNF1A (Mody 3) or early slow progressive Type 1. I would like to discuss my experience with other MODYs. I have been regularly visiting various GPs my entire life complaining of what were obviously secondary symptoms rather than primary. Dogmatism has no place in the identification and treatment of diabetes.

Hiya,

I can’t help too much as I am not MODY. But I just wanted to let you know I was tested for it and it was negative. I was told it could be likely as I come from a long line of diabetics (my maternal nan was T2 in her older years, my mum is T2 from 40 and never over weight, my sister getting gestational diabetes on each pregnancy).

Also when I had the test done it took many weeks to come back (I can’t remember how many).

Best of luck with everything

 

[Antje77]

Sounds like you've been having a hard time of it.

I have been regularly visiting various GPs my entire life complaining of what were obviously secondary symptoms rather than primary.

May I ask what you mean by the difference between primary and secondary symptoms? From what I understand diabetes symptoms are usually caused by high blood sugars, regardless of type.

 

[steveelles]

Thanks, I understand now. The only things I know about MODY are that it is very rare and genetic. Do you have any relatives with MODY?

Hi there. Maternal grandfather was Type 2. Paternal grandmother was "Type 1" but here's the thing. She was undiagnosed until 56 when she had a diabetic crisis on holiday which brought on a catasrophic stroke. This was 1982 and MODY was identified in the 90s if I have my facts right. She died in 1988. My father is prediabetes but he runs a couple of miles every day. His brother died 3 years ago of pancreatic cancer. The genetic link would explain my early childhood experiences.

 

[steveelles]

How frustrating that you had to take such steps!

I don't know what the outcome of your MODY subforum request will be, but we have had a few MODY threads over the years. You may find them interesting.

If you type MODY into the SEARCH box, top right of the screen, and search on Thread Title, you will see a whole list of threads.

Thank you, I will do that. Not a lot on YouTube either.

 

[steveelles]

Sounds like you've been having a hard time of it.

May I ask what you mean by the difference between primary and secondary symptoms? From what I understand diabetes symptoms are usually caused by high blood sugars, regardless of type.

Hi, yes absolutely. Until the night sweats started in my late 20s I never showed any of the usual symptoms. I was never tested for blood sugar until I was 40. I never had any thirst or frequent trips to the loo. However, I did wet the bed until 11 and my Mum pointed out that I was in fact always thirsty and used to guzzle all my drinks, always wanting more. I had forgotten that, presumably simply getting used to being thirsty all the time. The secondary symptoms I had for 2 to 3 decades were, blurry eyes, horrific stomach pains, trembling hands, night sweats, tinnitus, screaming headaches and mood swings. I can also remember of couple of incidents in my teens where I clearly hypo'd. I also had horrific hangovers and was anyone's after a pint. There's more to this list but you get the point.

 

[steveelles]

Hiya,

I can’t help too much as I am not MODY. But I just wanted to let you know I was tested for it and it was negative. I was told it could be likely as I come from a long line of diabetics (my maternal nan was T2 in her older years, my mum is T2 from 40 and never over weight, my sister getting gestational diabetes on each pregnancy).

Also when I had the test done it took many weeks to come back (I can’t remember how many).

Best of luck with everything

Hi. I hope they get to the bottom of things for you. I feel like we were all born a couple of decades to early and that the knowledge is going to come later. That said, I am feeling pretty grumpy about no one spotting I was diabetic for 35 years but I shall place a positive eye on the furture.

 

[biochemmama]

Hey there. I know this is an old post, but have you connected with the large MODY Facebook group? I am not sure what happened with the thought of a MODY subthread, but it's a great idea.