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Type 1 and other autoimmune conditions

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
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Elaine22

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Type 1
Hi everyone, is there anyone in the forum that has author autoimmune conditions that affect their diabetes control? I have Hashimotos and Coeliac and if either is not controlled correctly my blood sugar shoots up. I'm wondering if any of you share this problem? The obvious answer is don't eat Gluten and take your thyroid medication but it is not as simple as that. In addition the Drs have said that I may get other autoimmune conditions:( Have any of you been told that? Thanks for any replies
 
I have Raynaud's which may or may not be an autoimmune condition (there seems to be two different type with the same symptoms).
I have had it since childhood and inherited it from my mother (who inherited it from her mother). It never affected me much but was a problem when I was diagnosed with diabetes later in life. A Raynaud's flare up can be triggered by stress. One of those stresses can be a hypo. Unfortunately, the Raynaud's symptom of white fingers means I have no blood in my fingers to take a test to check if I am hypo or whether it is due to cold.

I appreciate this is different to your Hashimotos and Coeliac and doesn't affect my blood sugars but I have read that autoimmune conditions gather in groups.
 
I have this also. As soon as it gets slightly cold my ring finger usually will turn white and feel numb for ages. If I try to warm them up my whole hand goes purple it freaks me out a bit.
 
I stopped counting the amount of autoimmune conditions I have 🙂
 
Underactive thyroid, psoriasis (not badly, just around elbows) and Alopecia Areata.
 
Coincidentally, I was just reading this: https://care.diabetesjournals.org/content/44/11/2449
It mentioned:
"Adults with new-onset type 1 diabetes are at increased risk of other autoimmune conditions. About 30% of individuals with adult-onset type 1 diabetes have thyroid autoimmunity. In addition, adults with type 1 diabetes who possess high-titer GADA and/or multiple islet autoantibodies are at increased risk of progression to hypothyroidism. "
 
Thanks for your reply I can see how not being able to finger prick when you have a hypo must be very difficult. Did you find it very hard to get your diabetes accepted by Drs as type 1 when you were a bit older? They quite often assume it is type 2 based on age. More and more diabetes types are now recognised. Not that I have experience of that as I was diagnosed as a child. Diabetes affects circulation so you must find that as a double whammy with your Raynaud's? Circulation is a worry of mine as it can can add to risk of amputation along with increased risk of infection. I don't know much about Raynaud's but read that it can be a sign of an autoimmune condition like Lupus, have you heard that?
 
Pattidevans said:
Underactive thyroid, psoriasis (not badly, just around elbows) and Alopecia Areata.
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Hi Pattidevans, did they test for thyroid antibodies when you were diagnosed with underactive thyroid? They quite often don't as the treatment is the same but it is important to know if you have antibodies (therefore Hashimotos thyroiditis).If you have 3 autoimmune conditions or more you have a condition called MAS (multiple Autoimmune Syndrome ) and there is a lot of research going on at the moment. They say it's rare but I think it's just because they don't check for antibodies so numbers are artificially lowered!
 
Elaine22 said:
Thanks for your reply I can see how not being able to finger prick when you have a hypo must be very difficult. Did you find it very hard to get your diabetes accepted by Drs as type 1 when you were a bit older?
Click to expand...
I was diagnosed in my mid-30s and they used the less than scientific method to determine my type (c-peptide and GAD tests were less popular than they are now): they took a look at me and said "You are too slim to have type 2 so it must be Type 1" and started me on insulin the next day.
I feel I was lucky - I was not misdiagnosed with type 2 so didn't have to go through years of being told I wasn't taking it seriously and they got the diagnosis correct wrt Type 1 so I wasn't put on insulin unnecessarily.
 
Helli, thanks for that LINK although I'm not sure I understood it all. It seems to be going against the long held belief that type 1 typically occurs at a younger age. My Grandson was tested for antibodies and genetics for Diabetes and Coeliac. At two years old he had genes for both and antibodies. However he was presenting with low blood sugar and ketones first thing in the morning after his fast. The Drs said he would grow out of the low blood sugars and ketones and that he may never develop diabetes. They did a gut biopsy for Coeliac which was negative however at age 11 he is now having to eat a Gluten free diet as he is being sick if he eats Gluten and now recognises that himself. It's all so confusing but I am keen to learn more. I don't think the immune system has had enough research as the medics don't understand it as shown in the recent COVID pandemic where the immune system was attacking organs in people in intensive care with Covid. Confusing isn't it!!
 
Elaine22 said:
Did you find it very hard to get your diabetes accepted by Drs as type 1 when you were a bit older? They quite often assume it is type 2 based on age
Click to expand...
My GP certainly thought that. Luckily she also recognised that I didn’t seem to fit the standard Type 2 model, so referred me to the hospital. They weren’t especially quick off the mark either, but did do a GAD test when I wasn’t responding to Type 2 meds. I was 51 at diagnosis. There are several other members who had the same experience of being misdiagnosed, @stephknits is one, I think.
 
I have T1 diabetes, mild asthma, chronic pancreatitis (auto immune), ulcerative colitis, and PLS (which is a variety of MND) which may or may not be autoimmune.

Like a lot of people, my T1 diagnosis was late after an initial assumption of TC because of my age. The two conditions that affect the diabetes are the ulcerative colitis, which needs high dose steroids to control flare ups, and the CP, because the Creon capsules can change the rate of absorption of food. Both are controllable with experience.
 
Elaine22 said:
Hi Pattidevans, did they test for thyroid antibodies when you were diagnosed with underactive thyroid? They quite often don't as the treatment is the same but it is important to know if you have antibodies (therefore Hashimotos thyroiditis).If you have 3 autoimmune conditions or more you have a condition called MAS (multiple Autoimmune Syndrome ) and there is a lot of research going on at the moment. They say it's rare but I think it's just because they don't check for antibodies so numbers are artificially lowered!
Click to expand...
No, they didn't check for antibodies. I was just diagnosed hypothyroid as a result of TSH tests as part of my periodic diabetes review at the GPs. At the time I was diagnosed as T2 since I was 57 when I staggered into the GP's surgery having lost weight rapidly and was drinking gallons of water. I could barely walk at the time and BG was above the level that a finger prick meter would register. It just said "Hi". I think the GP's nurse rang the local DSN (who I came to loathe subsequently) who said "oh well, she's 57 it has to be T2". Though I had ketones and within a week I was on insulin. 8 years later the Endo I was seeing about thyroid issues agreed to give me a CPeptide test and decided I was actually T1. He said GAD antibodies may have gone after 8 years so didn't test.

The only antibodies they have tested for are for the alopecia and they came back positive. Bit of a lottery isn't it? I'll do some googling on MAS. Thank you for the information @Elaine22
 
mikeyB said:
I have T1 diabetes, mild asthma, chronic pancreatitis (auto immune), ulcerative colitis, and PLS (which is a variety of MND) which may or may not be autoimmune.

Like a lot of people, my T1 diagnosis was late after an initial assumption of TC because of my age. The two conditions that affect the diabetes are the ulcerative colitis, which needs high dose steroids to control flare ups, and the CP, because the Creon capsules can change the rate of absorption of food. Both are controllable with experience.
Click to expand...
mikeyB said:
I have T1 diabetes, mild asthma, chronic pancreatitis (auto immune), ulcerative colitis, and PLS (which is a variety of MND) which may or may not be autoimmune.

Like a lot of people, my T1 diagnosis was late after an initial assumption of TC because of my age. The two conditions that affect the diabetes are the ulcerative colitis, which needs high dose steroids to control flare ups, and the CP, because the Creon capsules can change the rate of absorption of food. Both are controllable with experience.
Click to expand...
Poor You mikeyB, poor all of us! I've always thought that ulcerative colitis must be the most painful of the 3 conditions Coeliac being almost the easiest. Crohns is very nasty too. Pancreatitis sounds nasty too!!Sorry I sometimes list the autoimmune conditions to show myself how lucky I am. It sometimes works. I know that sounds very selfish, sorry bout that!
 
Pattidevans said:
No, they didn't check for antibodies. I was just diagnosed hypothyroid as a result of TSH tests as part of my periodic diabetes review at the GPs. At the time I was diagnosed as T2 since I was 57 when I staggered into the GP's surgery having lost weight rapidly and was drinking gallons of water. I could barely walk at the time and BG was above the level that a finger prick meter would register. It just said "Hi". I think the GP's nurse rang the local DSN (who I came to loathe subsequently) who said "oh well, she's 57 it has to be T2". Though I had ketones and within a week I was on insulin. 8 years later the Endo I was seeing about thyroid issues agreed to give me a CPeptide test and decided I was actually T1. He said GAD antibodies may have gone after 8 years so didn't test.

The only antibodies they have tested for are for the alopecia and they came back positive. Bit of a lottery isn't it? I'll do some googling on MAS. Thank you for the information @Elaine22
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Please let me know what you find out. I get lost in all the facts but read a few times but that takes a lot of time!😳
 
Hi, yes as @Robin says, 8 was misdiagnosed as type 2 due to age (42 at the time). I had no other type 2 risk factors. It took 9 months to get re-diagnosed,during which time I reduced carbs as much as possible as they made me feel like the living dead, lost a load of weight I didn't need to loose and eventually ended up in A&E on the advice of a gp i never met who was reviewing the urine sample i had dropped off at the surgery so the nurse could change my prescription. He told me to leave work and go straight to hospital.
 
stephknits said:
Hi, yes as @Robin says, 8 was misdiagnosed as type 2 due to age (42 at the time). I had no other type 2 risk factors. It took 9 months to get re-diagnosed,during which time I reduced carbs as much as possible as they made me feel like the living dead, lost a load of weight I didn't need to loose and eventually ended up in A&E on the advice of a gp i never met who was reviewing the urine sample i had dropped off at the surgery so the nurse could change my prescription. He told me to leave work and go straight to hospital.
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Hi stephknits, that sounds terrible you must have been on the verge of DKA all down to them not testing for antibodies which is a simple blood test. Glad you are on correct treatment now.
 
EPI, exocrine pancreatic insufficiency, all linked to having clapped out pancreas, 3 years diagnosed although problem was going on for while before that.

Take Creon supplement with food, it is what it is so just get on with things.
 
nonethewiser said:
EPI, exocrine pancreatic insufficiency, all linked to having clapped out pancreas, 3 years diagnosed although problem was going on for while before that.

Take Creon supplement with food, it is what it is so just get on with things.
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Thats a terrible condition but at least you have treatment which hopefully helps. Diabetes T1 is a risk factor for it and so is Coeliac so I'm crossing my fingers as I have both. do you still get symptoms even with the Creon?
 
Elaine22 said:
Thats a terrible condition but at least you have treatment which hopefully helps. Diabetes T1 is a risk factor for it and so is Coeliac so I'm crossing my fingers as I have both. do you still get symptoms even with the Creon?
Click to expand...

Wouldnt describe it as terrible, lot worse conditions to have.

Know about connection with coeliac disease, been tested few times over years but nothing showing every time.

Creon does keep things mostly steady, recently started taking probiotic daily as well as adding Inulin to morning porridge, feels loads better for it so dont know if one is helping or both.
 
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