T1 Diabetes

@bruffin I think the requirement for T2s to get a Libre on prescription round here is that you are on at least 3 medications for diabetes. According to the c-peptide tests, DH definitely makes insulin but his body doesn’t seem to release it as required. His consultant said the Trulicity would help with that. He asked about Victoza years earlier and was told he ‘wasn’t fat enough’ 😡 so he struggled on with other medicines and eventually ended up with DKA. That was what triggered all the re-testing (c 18 years after initial T2 diagnosis). He was on Novorapid and Levemir for a while (that’s when we decided to pay for the Libre) but since all the second batch of tests came back saying definitely T2 and Trulicity was prescribed, he was able to stop the Novorapid. So the Libre isn’t so vital now but it still helps us to monitor how different foods affect him.

sorry @LeCirqueFouFurieux , I’ve hijacked the thread somewhat. I hope you are feeling better. When my DH was first diagnosed we joined Diabetes UK and have been members ever since. While most of the time the magazines go straight into the recycling, I do flick through them and sometimes pick up useful titbits of information. They also fund research into diabetes so that’s an added bonus.

Thanks@jellycat
I have used a libre which i got free trial. It was great but i dont qualify under NHS as too stable. Im on Novomix 30 twice a day and libre showed i was 97% in range.
Going to see consultant again next march and need to do another cpeptide test before then to see how much insulin i am producing naturally

@bruffin my DH (T2) is on metformin and insulin as well, plus Trulicity. He’s pretty much tried all the different oral medications over the years but none of them worked well enough so here we are (we call Trulicity the wonder drug because before he was prescribed that he was on basal and bolus insulin and now he only needs basal). He has been tested (repeatedly) for T1 (they thought he had LADA) and MODY but in the end decided he was T2. I wonder if in a few years they will want to test again for something else newly discovered (he is a very atypical T2-quite young at initial diagnosis, slim, fit, and has had DKA which prompted them to re-test him for T1). He has a Libre (which he gets on prescription now, after years of self-funding) which is brilliant.

Im on metformin and insulin, but half my initial dose when i was first diagnosed.

This was exactly the same for my DH . Treated as T1 , had all the tests but told that We wouldn't officially know for several weeks. Consultants expected T1 due to severity of his symptoms. Given Insulin for several weeks before decision made it was T2. Had to be weaned off the Insulin slowly and placed on meds.

How are you doing, OP?

I missed Op's latest and see she is T!
Yes i had a GAD test and a cpeptide test . They didnt seem to know whether i was t1 or t2 for weeks

She will have had the antibody test to confirm if it is type 1 or type 2. With type 1, she will be full of antibodies.

Diabetics get free prescriptions for life. Don't worry.

Apologies I have seen the update now.

All the best @LeCirqueFouFurieux. I know it's not an easy condition to manage, (from my own experience) but it can be done.

RTFT

T2s get free prescriptions if they are on any diabetes medication, not just if they need insulin.

OP I hope you are feeling better. After everything has settled down, you’ve had all the test results and have the correct treatment, hopefully you’ll be offered a Libre or Dexcom on the NHS (continuous glucose monitor).

People with Addisons and people with Type 1 diabetes always get free prescriptions
Also T2 if you are on insulin.

It may not be T1 , it could be T2, i had excessive thirst, weight loss etc and ended up in hospital with an infection and DKA without A. My blood sugar was 26 (instead of under 9) and i had high ketones. My GP sent me straight to a&e where i was taken into resus within 10 minutes. I was there for a day then on ward for a week
I went straight onto insulin and metformin and been diagnosed with T2

There is a type 1.5 which can sometimes be misdiagnosed as type 2 which starts in older people

That's very interesting about your afternoon BS spikes.

Have you had a day curve to see what's happening with your cortisol levels over 24 hours? It's a faff and you might have to push for it but DD had one. You stay in and they take blood every 2 hours for 24 hours and then you can plot your cortisol levels on a graph and compare it to a standard, non Addison's cortisol graph. It's very interesting. We discovered that DD's cortisol was higher at 5pm than at 8pm which is completely the wrong way round so we were able to adjust her medication accordingly.

Alternatively have you thought of trying prednisolone instead of hydrocortisone? It will be less peak and trough -y and give you a flatter cortisol profile that might be better for your blood sugars.

I did know someone who was diagnosed as type 1 in their 40s, so it can happen. He almost died, they caught it just in time and he doing pretty well now in his 70s.

Those symptoms can also be found in type 2. Either way it needs urgent help. If it does turn out to be type 1 then you need help very urgently.

@bloodyhellken
This is so interesting about other supplements, thank you. I have both T1, Addisons and under active thyroid. The steroids make my blood sugars very high every afternoon but there is nothing that can be done except ride it out each day. I am on a pump and the artifical pancreas software. My hba1c is 6.9% despite the afternoon highs 😊

My 7 year old daughter is also T1.

OP, you'll be just fine. You'll get the handg of carb counting etc and make sure you fight for the best technology out there. They still try and say no, but when you fight for it, you'll get it.
Follow Partha Kar on Facebook. He's a wonderful T1 consultant. He's very responsive if you ever wanted to contact him too.

Hi Op,

I was one of the posters who urged you to go to A&E yesterday and reading what's happened since, I'm really glad you did.

I'm really sorry to hear about your double diagnosis. We are 'blessed' with a rich autoimmune history in my family including T1D, Addison's, underactive thyroid, Reynaud's and probably more way back that I'm not aware of.

re: T1D
You will need to start Carbohydrate counting - this will be explained to you. It's not difficult once you get used to it but it might take a while for your insulin ratios to be worked out as from memory things can be a bit up and down in the first few weeks after diagnosis as your body readjusts to having insulin to use again. You can expect a few lows where you can feel shaky and horrible - which maybe won't be that low, but your body by now will be used to having high blood sugar.

Carb counting is basically counting up all the carbs in a meal and injecting the corresponding amount of insulin to balance out the carbs you're eating. It's not an exact science and as time goes on you'll get a good feel for different foods (and have the gift of being able to look at a plate of food and guesstimate the carbs in it). Be aware that fats - eg cream slow down carb absorption. Also look up 'resistant starch' (ie reheating cold starchy (carby) food like potatoes so you don't get a blood sugar spike) It wasn't something we were told about when DS was diagnosed but is really good to know for everyone, not just people with diabetes. There are lots of places to read about T1D and loads of info out there.

re: Addisons
This is a bit more tricky as it's less understood my many endos IMO, but hopefully yours, like ours will be on the ball. I would recommend the Addisons society forum - you can joint for about £30 a year I think (I am a member on behalf of my daughter).

You will be put on tablets - usually hydrocortisone to replace your missing cortisol and fludrocortisone to help you stop losing salt. You can also take prednisolone as an alternative. I would recommend reading up on Circadian Rhythm Dosing and any literature about Addison's by Professor Hindmarsh. There are many documents available online about his work (I think he is a paediatrician, but the same principals apply). There is a really good booklet called Living with Addisons Disease: An owners manual that I also recommend. Addisons really is one of those things where you should educate yourself as much as possible because it's quite rare and often misunderstood.

The other Addisons related thing I would recommend is taking 10-20mg DHEA each day because natural DHEA is mainly made in your adrenal glands and you may find yourself low in oestrogen as a result - it's covered in the booklet I mentioned above. Most importantly when you have Addison's you have to try not to overdo it by burning the candle at both ends because you will feel it more than most people and take longer to recover.

Good luck OP. If you want to ask me anything, even by DM please feel free x

Exactly what happened to me. Misdiagnosed as T2 and 2 years later ended up in A &E !

People with Addisons and people with Type 1 diabetes always get free prescriptions.

(Or move to Scotland, where everyone's prescriptions are free)

The endocrinology team will explain things to you today.

I'm so glad you went to A & E yesterday.

Good morning OP I hope you slept better then whoever is looking after your menagerie at home.
We used to have birds and they do make a racket.

I'm a type 1 diabetic....with "late onset" diabetes.
It's true what @BananaHamster says.
I was diagnosed at 50+yrs.
The blood tests should tell all.

OP,

I am in awe of how calm and collected you have sounded throughout your ordeal, especially as you continue to update us with your health situation. It sounds like you have some good people in your life.

The bird’s song is hilarious.

You need to apply for a medical exemption card, once that comes all prescriptions for anything are free. Your GP will have the form. Ask endocrinology about it when you see them.