Possible T1.5

I’m struggling. I have been T2 for 8 years but several bouts of Covid have played havoc with my blood sugar levels. My highest recorded fingerprick test was 42.5 resulting of course in a rapid visit to A&E.

My GP now suspects I have now got ketosis prone diabetes (T1.5 or Flatbush) it is refusing to refer me back to the diabetic clinic at the hospital at the moment. He thinks it can be managed by my diabetic nurse. As her definition of managing is one phone call in three months and then ‘let’s wait for the next HbA1c’ it’s clearly not working. My last HbA1c was 148, and this one is not going to be much lower as my daily readings are averaging 14.6.

While I wait for my next test, I am looking for some advice or help. Trial and error has shown me that ifI eat more than 150g carbs a day, my sugar levels go really high, if I eat less than 100g of carbs a day my ketones start to rise rapidly. My gliclazide has been increased to 120g in the morning and the same at night and it has made any difference at all.

Has anybody got any ideas of what I can eat to get between 35g and 50g of carbs per meal? I’m running out of ideas!

Zhnyaka said:

With t2, people's pancreas works, but they have a problem with insulin sensitivity, but with t1.5, the human immune system kills its cells capable of producing insulin. If it's really t1.5 and not t2, then you need insulin. but to find out if you have t1.5 or t2, you need a c-peptide test. Can you ask your doctor to prescribe this test for you?

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Hi. Thanks for your reply. I had a c-pep test which was borderline. There is a second test the hospital wanted to run but it hasn’t been done yet. The consultant is pretty sure it’s T1.5 and wants me to be referred back to his care as it’s been going on for over a year now (my BG readings have not dropped below 11.5 at all in that time). My GP practice is insisting that they can manage it using the practice nurse. But clearly it is not working, I have got them to agree that if my HbA1c is still high (which obviously it will be) on the next test they will consider referring me. Nice that they’re happy to play around with my health in that way!

The consultant thinks it could be one of two reasons for this change as I’ve been T2 for years is either my pancreas is reacting to the gliclazide (I have had pancreatitis several times), or I have yet another autoimmune disorder as I have multiple ones already. I also have MS which is not helping the situation.

I agree, I have asked several times and my consultant says I have every right to insist. Yet, they are using delaying tactics - I think part of the problem is that it is a training practice and we never get to see our regular GP any more (even those of us with multiple complex issues who supposedly have a care plan!). I never see the same person twice so there is absolutely no continuity of care.

Daibell said:

Hi. Your surgery is obviously not one of the best. Note that viruses can and do cause beta cell death. For a while after my diagnosis as a 'T2' I went onto Gliclazide which initially worked but when it went up to the max dose of 320mg/day and stopped working it was obvious I had few beta cells left and insulin was needed. Insist on seeing a consultant if the surgery won't give you insulin; my surgery DN handled the insulin and was very good. I did ask for a referral for a C-Peptide test which they did but it was marginal.

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Thanks for your reply. This sounds very much like the path I’m heading down. I was supposed the have an antibody test which hasn’t happened, but my c-pep was borderline. I am struggling to control my diabetes so I will call the practice on Monday and insist on a referral. Im falling into a deep sleep every time I eat and frequently feel lightheaded and confused so something needs to change - soon!

Thank you so much for your replies. It has all made me determined to get the referral back to the hospital. I did wonder if I was being overly concerned as the GP practice don’t seem to be taking it seriously, but I feel more confident in pushing for help now.

EllieM said:

How high are your ketones going? I assume you know about the risks of DKA

Diabetic ketoacidosis

Find out about diabetic ketoacidosis (DKA), including what the symptoms are, when to get medical help and how to prevent it.

www.nhs.uk

If you suspect you might be going into DKA you need to call 111 or 999 immediately....

I've got to say that like the others I am bewildered by your GP's attitude.

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They are within the limit the surgery set. The hospital insisted I am prescribed testing strips and I have to check regularly. The diabetic clinic explained about DKA and what to do if it goes above the parameter they set. I’m walking a tightrope between high sugar or high ketones …

My GP practice is awful, we don’t get to see any of the GPs just the trainees or practice nurses. Trouble is, where I live (rural area) it’s the only one in the catchment area. I have coronary artery disease too and they haven’t had me checked again since diagnosis 10 years ago! I feel totally unsupported, they don’t even check my CA125 after I had ovarian cancer … such a caring bunch!