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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

T1 Diabetes

137 replies

LeCirqueFouFurieux · 29/10/2023 10:39

Not an AIBU (well it sort of is as I'm unsure if I should go to A and E). I've been having some tests recently and not got the results - one was for T1 diabetes, I've just googled the symptoms and I have every single one on the list (but I forgot to tell the GP this when I saw her as I was focusing on one particularly symptom).

I have an appointment tomorrow to get the results. One of the things I forgot to tell her (and I mean I really did only speak about two symptoms (weight loss and fatigue)) is that I've been fainting pretty regularly; this is the part I'm unsure of - I've fainted (full on fainting from standing) three times this morning (usually it's just once every few days).

Is there anything I can do at home or is this something I should seek 111 or A and E advice from, or is it OK to wait until tomorrow and speak to the GP?

I have no idea about diabetes at all so any help or advice would be really useful from those that have experienced it?

OP posts:
garlictwist · 30/10/2023 06:48

My sister was also diagnosed with T1 in her thirties. They think hers was brought on by pregnancy and covid.

Original poster
LeCirqueFouFurieux · 30/10/2023 06:49

One thing I'm worried about is I have zero money at the moment (I'm really skint due to not being able to work), how much of this is covered via NHS free prescriptions or do I need to be looking at taking an overdraft out? I mean I think I can ask the staff that but also would just like to hear from others personal experiences... may sound silly and grabby but there's been so much happening that I had to stop working for a while now.

OP posts:
ScoobySnacks1 · 30/10/2023 06:49

Your prescriptions will be free so please don't be worrying about that

Baconisdelicious · 30/10/2023 06:51

T2 progressing to T1 is usually misdiagnosed T1 because doctors don't believe you can get T1 as an adult and try to treat T2. And as many people are in the honeymoon period where there is some insulin secretion, this works until it doesn't which is when they get rediagnosed as T1

This happened to a friend of mine. It is common, however, as previously said, for Type2s to think they have progressed to Tyoe1 when they have to use insulin. The diseases are not the same.

AussieManque · 30/10/2023 07:01

Covid is increasing the incidence of T1 diabetes

MissSmiley · 30/10/2023 07:05

@x2boys I hope your son is doing ok, I'm at risk of type 3c after I had the head of my pancreas removed surgically and I'm prescribed creon for life. He's so young to be dealing with that.

isthewashingdryyet · 30/10/2023 07:29

All prescription free with diabetes

x2boys · 30/10/2023 08:02

LeCirqueFouFurieux · 30/10/2023 06:49

One thing I'm worried about is I have zero money at the moment (I'm really skint due to not being able to work), how much of this is covered via NHS free prescriptions or do I need to be looking at taking an overdraft out? I mean I think I can ask the staff that but also would just like to hear from others personal experiences... may sound silly and grabby but there's been so much happening that I had to stop working for a while now.

All your prescriptions are covered now so that's one less thing to worry about .

x2boys · 30/10/2023 08:05

MissSmiley · 30/10/2023 07:05

@x2boys I hope your son is doing ok, I'm at risk of type 3c after I had the head of my pancreas removed surgically and I'm prescribed creon for life. He's so young to be dealing with that.

Thanks hes,adapted really well,we have no idea why it happened and were told it waa very rare especially due to his age
But everything is stable at the moment.

DuckWithOneWing · 30/10/2023 08:08

Your prescriptions will be free, but you need to get a form from your GP and apply for it!

www.nhsbsa.nhs.uk/check-if-you-have-nhs-exemption/medical-exemption-certificates

Georgeandzippyzoo · 30/10/2023 08:27

Dh was recently at the doctors (LOTS of badgering from me) due to excessive thirst, urination, fatigue, weight loss.
Finger prick tests for sugars and ketones and we were immediately sent to a&e. He would have been blue lights had I not been there
We spent the evening in hospital , he was on a drip and given Insulin injections.
At the immediate point he was treated as type 1 diabetic with insulin pens etc, however after further tests it was reassessed to type 2 (not always obvious) and receiving tablet meds. His type 2 symptoms had gone under our radar for so long that it manifested in what could have been quite catastrophic. Looking back we can see that his symptoms were there but we didn't put 2 and 2 together. Looked at each symptom as a separate thing. Stress, not drinking during the day, fatigue from working too hard etc, needing the loo at night because drinking a lot once home.
If you've had general bloods done diabetes should have been recognised. If you've not had them done I'd def mention/suggest to GP..
Make alist of all worries and ayptoms so you don't forget anything in the moment

Darknight5 · 30/10/2023 08:41

@Georgeandzippyzoo if you read the thread you will see OP has been diagnosed with type 1 diabetes and Addison’s disease

RedSnail · 30/10/2023 08:50

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.

poetryandwine · 30/10/2023 08:58

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.

Toptutort · 30/10/2023 09:15

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.

TheShellBeach · 30/10/2023 09:16

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.
Grin

TheShellBeach · 30/10/2023 09:19

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.

Toptutort · 30/10/2023 09:19

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

BloodyHellKen · 30/10/2023 10:11

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

Nowanextraone · 30/10/2023 10:47

BloodyHellKen · 30/10/2023 10:11

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

@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.

SunlightOverBamburgh · 30/10/2023 10:54

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.

SunlightOverBamburgh · 30/10/2023 10:56

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.

BloodyHellKen · 30/10/2023 11:23

Nowanextraone · 30/10/2023 10:47

@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.

Show quote history

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.

bruffin · 30/10/2023 11:30

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

bruffin · 30/10/2023 11:32

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

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