• Guest - w'd love to know what you think about the forum! Take the 2025 Survey »

three auto-immune conditions

B

briantaffy

Active Member
Messages
28
Type of diabetes
Type 1
Treatment type
Insulin
Hello 3 AICs. How do you all cope handling three AI conditions simultaneously? Mine are T1D, underactive thyroid and DH -a close relative of Coeliac disease.I just about manage. My main T1D area is waking up with high BGM numbers.
 
Hello, Ive got the triple too, T1, Coeliac and hypothyroid.

I've reduced carbs quite a lot and use a closed loop system to control the T1 beast (as much as possible). Closing the loop improved my overnight/waking bgs the most.
 
Type 1, Oral Lichen Planus and Coeliac disease ( Osteoporosis too, but the jury is still out on that one as an autoimmune condition) so definitely 3 at the moment.
 
Engineer88 said:
Hello, Ive got the triple too, T1, Coeliac and hypothyroid.

I've reduced carbs quite a lot and use a closed loop system to control the T1 beast (as much as possible). Closing the loop improved my overnight/waking bgs the most.
Click to expand...
Forgive my ignorance but does the closed loop involve an insulin pump and much expense? Plus much faffing and admin?
 
briantaffy said:
Forgive my ignorance but does the closed loop involve an insulin pump and much expense? Plus much faffing and admin?
Click to expand...

insulin pump (dana R) and Dexcom G5 - I self fund the dexcom so its about 70£ a month. Admin took a couple of hours to set up with really easy instructions

Faff is difficult to assess. mostly I just leave it do its thing, its dropped my Hba1c from 8.4 to 7.2 in 3 months. I don't stress about it too much but it does need connection and power, otherwise its straightforward.
 
T1 coeliac and Bile acid malabsorption sufferer here and I emphasize the word sufferer.
Its the BAM bit that I find the hardest and I find it works best to eat less but it not that easy to do it if that makes sense.
After 44 years a type 1 I find that the easiest of the three.

Tony
 
Tony337 said:
T1 coeliac and Bile acid malabsorption sufferer here and I emphasize the word sufferer.
Its the BAM bit that I find the hardest and I find it works best to eat less but it not that easy to do it if that makes sense.
After 44 years a type 1 I find that the easiest of the three.

Tony
Click to expand...
thank you Tony. My worst part of a day is waking up - when my bgm number is 50% of the time high ie over 12. My son and I ring each at 10pm every night, but always disagree on what to inject [or eat]. My thyroid condition is well-controlled - I THINK. I actually don't know! My rash on DH/coelaic is re-emerging according to how much "bad wheat or gluten" food I eat.I do sympathise with your BAM. My other "bad" area is eating huge amounts of carbohydrates. I have a sweet tooth. My average carb intake each day is 180-230! Any suggestions?
 
briantaffy said:
thank you Tony. My worst part of a day is waking up - when my bgm number is 50% of the time high ie over 12. My son and I ring each at 10pm every night, but always disagree on what to inject [or eat]. My thyroid condition is well-controlled - I THINK. I actually don't know! My rash on DH/coelaic is re-emerging according to how much "bad wheat or gluten" food I eat.I do sympathise with your BAM. My other "bad" area is eating huge amounts of carbohydrates. I have a sweet tooth. My average carb intake each day is 180-230! Any suggestions?
Click to expand...

Following a GF diet is imperative and I would avoid eating after 6pm so when its time for bed you know which way your levels are going.
Experiment on yourself and assuming at 73 you are retired then set your alarm for the middle of the night if you are anxious about what you've done.
I'm active and work at 50 years old and don't eat as many carbs as you but but but I realise that works for me and don't think I'm being critical.


Good luck

Tony
 
Tony337 said:
Following a GF diet is imperative and I would avoid eating after 6pm so when its time for bed you know which way your levels are going.
Experiment on yourself and assuming at 73 you are retired then set your alarm for the middle of the night if you are anxious about what you've done.
I'm active and work at 50 years old and don't eat as many carbs as you but but but I realise that works for me and don't think I'm being critical.


Good luck

Tony
Click to expand...
fine words Tony. My evening meal has always been at 7.30pm and I ALWAYS have a pudding, or TWO, so I know what to do. Easier said than.... I do plenty of exercise, which helps, despite exercise having a dual effect.
 
Sorry to be so delighted, but I think it's great that there's a place in the forum for this!

I have Grave's (2002), colitis (2011) and now T1 as of this month. Grave's is dealt with for the most part as I had my thyroid treated with radioactive iodine in 2002 (no function anymore, it's now just a little 'raisin' as one doc described it). The colitis is kind of an ongoing struggle which I can sometimes keep in control with the specific carbohydrate diet (basically low-carb except from veggies and a few sorts of beans). Now with T1 I'm feeling naturally more inspired to be low-carb and I feel like I can do that without missing too much.

Anyway, like I said, I'm quite happy to see other people with autoimmune hat-tricks. I felt like a bit of a freak when they diagnosed me with T1 on top of the other illnesses :/
 
Jo Bodensee said:
Sorry to be so delighted, but I think it's great that there's a place in the forum for this!

I have Grave's (2002), colitis (2011) and now T1 as of this month. Grave's is dealt with for the most part as I had my thyroid treated with radioactive iodine in 2002 (no function anymore, it's now just a little 'raisin' as one doc described it). The colitis is kind of an ongoing struggle which I can sometimes keep in control with the specific carbohydrate diet (basically low-carb except from veggies and a few sorts of beans). Now with T1 I'm feeling naturally more inspired to be low-carb and I feel like I can do that without missing too much.

Anyway, like I said, I'm quite happy to see other people with autoimmune hat-tricks. I felt like a bit of a freak when they diagnosed me with T1 on top of the other illnesses :/
Click to expand...

Good news Jo B; welcome to the Triumvirate! Does anyone know how a sweet-toothed man like me can eat low carbs [my daily average carb intake is 200gs!].
 
briantaffy said:
fine words Tony. My evening meal has always been at 7.30pm and I ALWAYS have a pudding, or TWO, so I know what to do. Easier said than.... I do plenty of exercise, which helps, despite exercise having a dual effect.
Click to expand...

Yes Brian
I do understand but as long as you don't think I'm being rude or critical.

All the best

Tony
 
I've had asthma and eczema most of my life, Type 1 for 40 years this November, osteoporosis for 5 years and coeliac disease for 2 years.

I have very little trouble with asthma but my eczema can be very annoying from time to time (thank goodness for antihistamines!)

Type 1 has its moments but I'm generally OK. However, in January retinal screening referred me to an eye specialist. In March I was told it's a 20 week wait for an appointment, but this week I was told it's a 30 week wait. My consultant wants me to see DSN and dietician to try and reduce the standard deviation of BGs. He said he would speak to DSN and I also e-mailed her but have heard nothing. It's only a fortnight since I saw the consultant, but I didn't expect to wait this long to at least get notice of an appointment with DSN and dietician. (My previous DSN was excellent, so I suppose I've been spoiled.)

My osteoporosis has improved since I went GF. I'm just angry that I was only tested for coeliac disease for the first time, after 38 years as Type 1.

Coeliac disease still upsets me. It's things like popping into a newly opened restaurant to be told they couldn't provide a gluten free meal (I had thought I could at least have fish or steak with salad).
Then there was the 4star hotel where they "lightly toasted" the gluten free bread to defrost it, before making my sandwich. The bread felt hard to the touch, so I sent it back. I didn't even bother to ask if they'd used a toaster for only GF bread.

Don't get me wrong. I don't mope around feeling sorry for myself. I regard myself as an active, healthy, happy person. I enjoy life!
 
Back
Top