GCK MODY testing

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MODYglucokinase48

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Looking for some advice about getting tested for MODY GCK. My HbA1c levels have been around the 45-48 level since being diagnosed with gestational diabetes over 4 years ago. My doctor told me in December to lose some weight as I was “pre-diabetic” (47) and I also started exercising more. My HbA1c has been 48 on the last two tests in February and May despite losing weight around my waist and doing HIIT workouts etc. I think I have gone from a size 10-12 to 8-10.
I contacted my cousin who also had gestational and she said she had her DNA tested in New Zealand and was told she was Glucokinase MODY.
My doctor says this type of testing is not available in this country. Any ideas of how to proceed? From my internet search it seems to suggest that I could have my blood tested in Exeter. I am in Glasgow, Scotland.
 
Welcome to the forum @Covidprediabetesnow48

Slightly confused that your Dr said there weren’t genetic tests for MODY available in the UK, because these are recommended in the 2015 NICE guideline for T1 diabetes in adults to differentiate suspected rarer forms of diabetes.

My knowledge of MODY is a bit thin I‘m afraid, but we do have a few members here with it who may be able to share their experiences.

There’s a little more information here too

Maturity onset diabetes of the young (MODY)

MODY is a rare form of diabetes which is different from both type 1 and type 2 diabetes, and runs strongly in families. MODY is caused by a mutation (or change) in a single gene. If a parent has this gene mutation, any child they have, has a 50% chance of inheriting it from them. If a child does...
www.diabetes.org.uk www.diabetes.org.uk
 
@Covidprediabetesnow48 MODY testing is definitely available here! I was tested to rule out MODY. Apparently the testing is expensive, so they sometimes do other tests first to judge if the MODY testing is necessary eg they might test C Peptide and for Type 1 antibodies before deciding whether to do the MODY testing.
 
everydayupsanddowns said:
Slightly confused that your Dr said there weren’t genetic tests for MODY available in the UK, because these are recommended in the 2015 NICE guideline for T1 diabetes in adults to differentiate suspected rarer forms of diabetes.

My knowledge of MODY is a bit thin I‘m afraid, but we do have a few members here with it who may be able to share their experiences.

There’s a little more information here too
Click to expand...
Thank you- yes that was the first thing that comes up when you search MODY but my doctor said it wasn’t available in the UK. I said about Exeter and he said he had asked the diabetes expert in the surgery and she said there was nowhere to get DNA tested and that she would check my levels again in 6 months. I’m planning to make an appointment again next week but want to go with more information this time. I can see a form on the Exeter website but not sure if I would be eligible for the test.
 
Inka said:
@Covidprediabetesnow48 MODY testing is definitely available here! I was tested to rule out MODY. Apparently the testing is expensive, so they sometimes do other tests first to judge if the MODY testing is necessary eg they might test C Peptide and for Type 1 antibodies before deciding whether to do the MODY testing.
Click to expand...
I think there is a high likelihood I am GKY as my cousin on my Dad’s side had this confirmed through DNA testing in New Zealand.
 
Covidprediabetesnow48 said:
Thank you- yes that was the first thing that comes up when you search MODY but my doctor said it wasn’t available in the UK. I said about Exeter and he said he had asked the diabetes expert in the surgery and she said there was nowhere to get DNA tested and that she would check my levels again in 6 months. I’m planning to make an appointment again next week but want to go with more information this time. I can see a form on the Exeter website but not sure if I would be eligible for the test.
Click to expand...
Well, it look like the diabetes 'expert' in your surgery is plain wrong! I’m just a layperson, yet I found the Exeter site with all the details on testing with a few clicks on Google. The other problem is cost, I think one of our members, @Stitch147 is suspected to be MODY but her GP refuses to fork out for the cost of the testing. Perhaps you should go armed with the links to the Exeter Diabetes Genes website and suggest the surgery have a read of it, and ask for a referral to a consultant for proper diagnosis.
 
Thank you - it’s just a wee bit trickier when everything is done over the phone. I was thinking I could try printing or sending the info by email and see if that helped? Just thinking aloud!
 
Yep, I'm suspected to have a form of MODY, but gp is unwilling to get genetic test done so I just get treated as a type 2.
 
It’s a bit unsatisfactory- it would be good to know! Also I have 3 nieces and my cousin and I both had issues with birth weight with our kids (very small and very big). What sort of cost is involved? Would it be possible to get it done privately?
 
Hi @Covidprediabetesnow48 I’ve been diagnosed with glucokinase MODY. This was found whilst I was taking part in the ReTune research study in Newcastle. They took lots of blood during the trial which lasted a year and at the end told me I couldn’t reverse my type 2 because I’m MODY.
My sister and niece subsequently went to their GP and requested a test as it’s a genetic type of diabetes. Both were also found to be MODY. It’s most important to know for pregnancy but for me meant I could stop metformin as it doesn’t help sugar levels. Levels just run slightly above normal.
I hope this may help you by at least confirming as others have said that you can get tested in UK.
 
Thank you so much everyone for your advice. I’ve been doing a wee bit more research this morning on diabetesgenes.org and the cost of the test is there Sanger sequence analysis of GCK £350 and Testing for a known GCK mutation by Sangar sequencing £100 (25% additional overhead for non-NHS tests)
 
That’s great that you now have the diagnosis! On a side note I understand how expensive these tests are but if they could stop undiagnosed diabetes getting out of control they should be run anyway
 
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