New diabetic just moved to the Uk. Requesting tests

[Mbabazi]

I was diagnosed 5 months ago when I ended up in the hospital with DKA and I was told I was likely a MODy because my c peptide was borderline and I had markers of a type 1. My AH1C was 9.1. I was put on insulin to begin qith and a bunch of other drugs. I slowly weaned myself off meds and was on a strict diet to try and reverse my diabetes. My doctor had asked me to do antibody test to confirm what diabetes I have but I was unable to.

I have now just moved to the UK and would like to do those tests. When i went to the GP i was given an appointment to see a doctor a week later and then to do labs a whole 3 weeks later and that was only for them to check my AH1C. It is still unclear to me what type of diabetes I have. What is the best way to advoate for the tests need?. Also this week i feel like some of the symptoms i had when i had DKA are back but im worried i wont get any help at the GPs. I feel like id like to check for ketones in my urine but the lab date I was given is a week away. Im also running out of testing strips. How do diabetics navigate the health system in the UK. Some advice please.

 

[everydayupsanddowns]

Welcome to the forum @Mbabazi

Sorry to hear about the uncertainty over your diagnosis

Have you registered with a GP here? And have they got access to your medical records from your home country?

If you have registered with a GP, and have a diagnosis with diabetes treated with medication, then I think your GP should be able to fill in a form for you to send off to get a medical exemption certificate for any prescriptions you need (at least that’s how it works for UK citizens).

MODY is a collection monogenic forms of diabetes, and there would be specific genetic checks that would be able to identify if you were affected.

LADA and T1 are autoimmune conditions that cannot be put into remission once beta cells have been significantly reduced by autoimmune attack. CPeptide measures how much insulin you are still able to produce, so can help to assess your beta cell mass.

Hope you are able to get a confirmation of your diabetes type soon.

 

[Leadinglights]

I was diagnosed 5 months ago when I ended up in the hospital with DKA and I was told I was likely a MODy because my c peptide was borderline and I had markers of a type 1. My AH1C was 9.1. I was put on insulin to begin qith and a bunch of other drugs. I slowly weaned myself off meds and was on a strict diet to try and reverse my diabetes. My doctor had asked me to do antibody test to confirm what diabetes I have but I was unable to.

I have now just moved to the UK and would like to do those tests. When i went to the GP i was given an appointment to see a doctor a week later and then to do labs a whole 3 weeks later and that was only for them to check my AH1C. It is still unclear to me what type of diabetes I have. What is the best way to advoate for the tests need?. Also this week i feel like some of the symptoms i had when i had DKA are back but im worried i wont get any help at the GPs. I feel like id like to check for ketones in my urine but the lab date I was given is a week away. Im also running out of testing strips. How do diabetics navigate the health system in the UK. Some advice please.

Welcome to the forum
Can I suggest you phone the Diabetes UK helpline in the morning as they will hopefully be able to help with advice that will apply to you as a new person in the UK.

 

[rebrascora]

You can buy Ketostix either online or from a pharmacy to check for Ketones in your urine. They cost about £5 for a pot of 50 so I would recommend you do that tomorrow if you suspect you are developing ketones.
Unfortunately many people here on the forum and no doubt in the wider population are having difficulty getting GP appointments let alone the more complex testing, so there is an element of keeping yourself safe by kitting yourself out with test strips and Ketostix and seeking urgent medical assistance via hospital A&E if those tests indicate you need it.

If you had Type 1 markers and a borderline C-pep then you are most likely LADA rather than MODY and whilst a strict low carb diet might keep a lid on it short term, in the longer term you need insulin. .

 

[Mbabazi]

Welcome to the forum
Can I suggest you phone the Diabetes UK helpline in the morning as they will hopefully be able to help with advice that will apply to you as a new person in the UK.

Thank you so much. I am up and will phone them at 9am when they open.

 

[Mbabazi]

You can buy Ketostix either online or from a pharmacy to check for Ketones in your urine. They cost about £5 for a pot of 50 so I would recommend you do that tomorrow if you suspect you are developing ketones.
Unfortunately many people here on the forum and no doubt in the wider population are having difficulty getting GP appointments let alone the more complex testing, so there is an element of keeping yourself safe by kitting yourself out with test strips and Ketostix and seeking urgent medical assistance via hospital A&E if those tests indicate you need it.

If you had Type 1 markers and a borderline C-pep then you are most likely LADA rather than MODY and whilst a strict low carb diet might keep a lid on it short term, in the longer term you need insulin. .

Thank you so much. It makes sense to have those tests. There is a boots near where I live so I will get some this morning. So that is the thing, I am not sure if I am a LADA or Mody but my doctor back home just thought I was not a type 1 or type 2 so had ordered those anti-body tests that were not available in the country we figured I would do them on arrival here. I am in my early thirties and on the skinnier side so losing weight may not help me much but I did see improvements when I did the low carb because I was finger testing before every meal and 1.5 hours after. In fact if anything, I had more problems with low numbers and hypos. It is all very exhausting I feel.

 

[Inka]

Welcome @Mbabazi 🙂 It’s not easy to get MODY screening tests in the U.K. due to cost. They usually do a questionnaire first to see if you’re likely to be MODY. An obvious question for MODY would be your family history as it’s genetic.

Type 1/LADA comes on more slowly in adults so the insulin production declines more slowly. If you’re Type 1/LADA, the thinking is that early introduction of insulin helps preserve the remaining beta cells for longer, so don’t fear insulin. All Type 1s/LADAs will need insulin.

 

[Mbabazi]

Welcome @Mbabazi 🙂 It’s not easy to get MODY screening tests in the U.K. due to cost. They usually do a questionnaire first to see if you’re likely to be MODY. An obvious question for MODY would be your family history as it’s genetic.

Type 1/LADA comes on more slowly in adults so the insulin production declines more slowly. If you’re Type 1/LADA, the thinking is that early introduction of insulin helps preserve the remaining beta cells for longer, so don’t fear insulin. All Type 1s/LADAs will need insulin.

Thank you. It feels nice to join such a helpful community of others. Sounds like LADa makes sense. I just wish there was a way to know for sure. Honestly I'm scared of being on insulin and meds forever. I just started my 30s and it feels like a lifetime of it. This is why I researched alot of things about reversal and have been trying that. I will get ketone tests to rule out DKA and wait for my bloods tests for the A1C.

 

[Leadinglights]

Thank you. It feels nice to join such a helpful community of others. Sounds like LADa makes sense. I just wish there was a way to know for sure. Honestly I'm scared of being on insulin and meds forever. I just started my 30s and it feels like a lifetime of it. This is why I researched alot of things about reversal and have been trying that. I will get ketone tests to rule out DKA and wait for my bloods tests for the A1C.

I'm afraid if it is Type 1 then there is no opportunity for 'reversal' and no option other than insulin, what is important is to get the correct insulin regime for YOU.

 

[helli]

Honestly I'm scared of being on insulin and meds forever. I just started my 30s and it feels like a lifetime of it

I too started insulin in my 30s. I have been taking it for 20 years and much more healthy than many of my non diabetic friends and colleagues.

If you have LADA insulin is the only option and delaying it with low carb can make things worse by causing insulin resistance as well as killing off your insulin producing cells quicker.
I understand you have been researching but if you thought the doc said MODY you may have been researching the wrong thing.

 

[Inka]

Thank you. It feels nice to join such a helpful community of others. Sounds like LADa makes sense. I just wish there was a way to know for sure. Honestly I'm scared of being on insulin and meds forever. I just started my 30s and it feels like a lifetime of it. This is why I researched alot of things about reversal and have been trying that. I will get ketone tests to rule out DKA and wait for my bloods tests for the A1C.

Type 1/LADA is a very different condition to Type 2. It’s an auto-immune condition where your own immune system mistakenly attacks and kills the crucial insulin-producing cells in the pancreas. Before the discovery and purification of insulin, it was a terminal condition - everyone with Type 1 died. So, insulin is a blessing not a curse 🙂

I know it’s scary to think about being on medication longterm, but the insulin injections simply replace the insulin your body can no longer make. You can still live a normal life. It’s a big shock to start with, of course, but it gradually gets easier.

Looking positively, they are working hard to find a cure for Type 1/LADA. There’s no cure yet but there might be in the future. The important thing is to look after yourself - eat properly, take your insulin (if you’re Type 1/LADA).