Type 1 Diabetic - 55yrs complications I never knew existed!


#1

I have Polyglandular Autoimmune Syndrome = Type 1 for 55yrs, Addison’s Disease for 17yrs [destroyed Adrenal Glands] + low Thyroid for 20yrs.
I wanted to post about my latest complication from D1 to offer a warning to others.
Due to a missed medication dose for my Addison Disease, my potassium rose to 10.3 and I became paralyzed and almost died. After ER treatment, my Drs were surprised that I survived, since a lot of people die at around 7-8!
As a safety precaution, since Potassium can damage your heart - they ran 3 tests on my heart = EKG, Ultrasound and Nuclear Heart Test. The first 2 tests came back perfect!
But the Nuclear test showed that even tho my heart was strong, my arteries were 90 -95% calcified and I needed a Triple Bypass - right away!
I had never had any chest pains or shortness of breath or any other signals that I was in trouble. This was due to D Neuropathy of the CHEST WALL = no pain or feeling, which you can’t tell if you have!
Apparently Calcified Arteries are a common D Complication - which shocked me, as I’ve never heard of this before.
So I’m not sure why we D’s are not receiving this Nuclear Heart Test automatically, as a precaution - since it’s a known complication!
So please ask your Drs to send your for this test and don’t take “NO” for an answer.

SuzyQ


#2

A useful warning, although Addison’s Disease and thyroid disease are less diabetic complications than a comorbidities which probably arise from the same genetic predispositions as are associated with diabetes.


#3

@Suzy_Q, I am really sorry to hear about the latest complication that is happening to you.

Did you already have your triple bypass? If not, I’ll keep my fingers crossed for you – let’s hope that all goes well and that you recover quickly!

Calcification is a common phenomenon with PWDs:

I was not aware that a nuclear heart test was a common test for finding out about calcification. I also think it should be a test that endos keep in mind for D patients.

As I am researching it, I am realizing it must be a very expensive test though – this may be why it is not standard procedure.


#4

I did undergo a successful Triple Bypass in April 2017 and just got clearance from my Cardiologist that I am totally back to NORMAL = PHEW :slight_smile:
The cause 4 Calcification from ALL my doctors was due to the Type 1D - with no connection 2 the Addisons or Thyroid. Of course the Addison did add another level of problems… but did not cause the Calcification.
I live in Canada where our health system - freely covers these type of tests and many others. I’m not sure about D1s who live in the USA.Do u know how much this test would cost in the States? It certainly saved my life!!!
6 months before my heart issues showed up - I had an ultrasound on my legs due 2 Neuropathy, below the knees + feet and it showed I had calcification of my leg arteries as well. Would that be a cheaper test for D1s and indicate artery problems in general?I’m not sure as my General Practitoner Dr never connected this as a problem with ALL my arteries.Would that ultra sound test be cheaper for US residents and perhaps indicate problems with the other arteries?
I noticed that your article is from 2003. Is there any up 2 date articles on this issue - I’m surprised that we don’t really hear about this - I’ve been going 2 an endocrinologist since 9yrs of age and NEVER was informed about this issue!!If it hadn’t been from my missed Addison’s pills and high potassium = I would never had learned that my HEART Arteries were blocked 95% and would’ve eventually died from Cardiac arrest.That’s what shocked me the most - no one in the medical profession WARNED ME and they all thought I was FINE!!!
SuzyQ


#5

Congratulations, @Suzy_Q, this is not a small thing! It’s wonderful that it is behind you.

No, but based on the cost of MRI + professional to interpret + fluid into your blood stream, I would estimate at $4,500 – I could be way off: I am not a medical professional but a consumer with kids who have many sports accidents :-).

In the US such prices can go from 1 to 5x or more. A simple MRI can cost $300 in one place in $2,500 in another.

Much cheaper! That might be only $600-$800.

I am not sure but I will check over the next few days.

That is shocking :frowning: Cardio vascular complications are some of the most common issues with D after retinopathy and kidney disease.


#6

@Seydlitz, I read that 1/7 of us have Polyglandular Autoimmune Syndrome. I had never heard of before. Reference is posted on your original forum page where this was posted. Reference is Joslin.

" Calcified Arteries are a common D Complication " - Suzy_Q

Anybody have a guess about what age I should get heart tests? I am 35.


#7

Well according to some of those links, because I’ve been T1 and hypothyroid since I was in High School, (autoimmune disorders affecting more than one endocrine organ) I have Polyglandular Autoimmune Syndrome that long.

I don’t really believe that but it seems to meet the definition?

I thought I was just T1 and hypothyroid which seems to be quite common. Even 30+ years ago they knew they happen together, and they did not think that hypthyroid was a “complication of diabetes”, just a co-existing condition that commonly occurs.

(Although if you look at the synthroid marketing you might be surprised that a male can ever be hypothyroid.)


#8

A house, a student loan, and bankruptcy, most likely…

I have Polyglandular Autoimmune Syndrome that long.

I don’t really believe that but it seems to meet the definition?

Since there is some apparent confusion about this, I thought I’d put my training and research skills to use here :slight_smile: Please see the following as my interpretation of reading up on PAS/APS: it is not intended as medical advice, and is just research that may (or may not) be useful to other PWDs.


So, you definitely have signs and symptoms of PAS (more commonly Autoimmune Polyendocrine Syndrome or APS), but that doesn’t mean you have it. On the other hand, your doctors should definitely be monitoring you for development of Addison’s. At it’s simplest, APS is just autoimmune disorders of more than one endocrine glandular system. But “true” APS is genetic in basis (we’re all used to this at this point with T1 haha), has a different genetic basis than “typical” DM T1a, and like DM T1a isn’t entirely understood.

tl;dr: without expensive genetic tests, you can’t really receive a differential test of APS Type 1; without expensive genetic tests or development of Addison’s disease, you can’t really receive a susceptibility test of APS Type 2; since you’re still alive, you almost certainly don’t have IPEX or APS Type 3.

So, it probably depends on what type of PAS (or APS, terminology is confusing) you’re talking about. There are two “Types” of APS, and the general focus has been on the adrenal cortex (initially researched by Addison, and hence “Addison’s disease”). I suspect if you had been diagnosed as T1 and with Addison’s, someone would have diagnosed you with APS. However, you’re already doing at least half of what is normal after being diagnosed with APS: treating the multiple failures of endocrine glands (thyroid and beta cells in your case). The second part of APS for most people is regular monitoring for other endocrine gland failure: if your doctor(s) are monitoring for Addison’s (which they should be), then you’re getting the full treatment even if not given the diagnosis officially.

IN short, if you have autoimmune disorders of more than one endocrine gland, then you have symptoms of either Type 1 or 2 APS. That you survived childhood likely means you don’t have IPEX (a very rare, X-linked APS that only males can manifest and is usually fatal). They can do genetic testing to determine whether you do have T1 APS. They can do genetic testing to determine if you are susceptible to T2 APS. Having more than one autoimmune glandular disorder means you are at high risk of having T1 or T2 APS, and since Addison’s can be absolutely devastating (c.f. the OP’s story), it’s really important to monitor.

Although I can’t find any “standard procedures” due to the extreme rarity of actual APS (rather than just being unlucky enough to have more than one autoimmune disorder simultaneously), it seems to me that any diabetic that is also diagnosed with another autoimmune endocrine disorder should absolutely talk to their doctors about APS and regular antibody testing for Addison’s, Hashimoto’s, Grave’s, and autoimmune Aenemia (at the least).


#9

There are two types of problems associated with type 1 diabetes. First are the complications which are caused, at least in part, by hyperglycemia. Second are the autoimmune diseases which are more common in type 1 diabetics, but which are not strictly complications of the disease, since the disease itself does not cause them. Instead, the same genetic disposition of the type 1 diabetic to develop diabetes as a result of autoimmunity when exposed to some environmental stress also causes the type 1 diabetic to be more likely to develop other autoimmune diseases, such as multiple sclerosis, Wegener’s vasculitis, lupus, etc.


#10

If you have had D1 for a long time and have other complications from it … than I would want 2 have my arteries checked, as a precaution.I just read this and thought I’d post it: "The longer you have diabetes, the higher the chances that you will develop heart disease.1People with diabetes tend to develop heart disease at a younger age than people without diabetes. In adults with diabetes, the most common causes of death are heart disease and stroke. Adults with diabetes are nearly twice as likely to die from heart disease or stroke as people without diabetes.
This is from a USA site: A basic exercise EKG costs about $200. Some doctors use a nuclear stress test in which a radioactive dye illuminates how well the heart is working. Those tests are priced at an average of $630.According to the American College of Cardiology, stress tests should only be performed on patients who have peripheral artery disease, diabetics over age 40 and people who have an increased risk of coronary artery disease.

Seydlitz
September 15 |

There are two types of problems associated with type 1 diabetes. First are the complications which are caused, at least in part, by hyperglycemia. Second are the autoimmune diseases which are more common in type 1 diabetics, but which are not strictly complications of the disease, since the disease itself does not cause them. Instead, the same genetic disposition of the type 1 diabetic to develop diabetes as a result of autoimmunity when exposed to some environmental stress also causes the type 1 diabetic to be more likely to develop other autoimmune diseases, such as multiple sclerosis, Wegener’s vasculitis, lupus, etc. Visit Topic or reply to this email to respond.
In Reply To

mohe0001
September 15 |

@Seydlitz, I read that 1/7 of us have Polyglandular Autoimmune Syndrome. I had never heard of before. Reference is posted on your original forum page where this was posted. Reference is Joslin. Anybody have a guess about what age I should get nuclear heart test? I am 35. Visit Topic or reply to this email to respond. To unsubscribe from these emails, click here.


#11

I believe this is your insurance copay, i.e. what you end up paying after your insurance picks up the rest.

This survey site writes that the average cost of cardiovascular stress tests in the US is $4,400, and that it can go up to $11,700 (accessed on 9/15/2017)

Full disclosure: I am not sure how accurate these numbers are. But I am not surprised at the numbers.


#12

If you are lucky and the facility you use has a 620 slice CT scanner you get the same or better results in 5 minutes and less cost.


#13

I don’t know HOW americans with health issues handle care + medication costs AND the STRESS of it all!!!It’s bad enough receiving a life threatening diagnosis - without having 2 figure out IF u can AFFORD the treatment.Canadians receive the same health treatment whether u r a homeless person or a millionaire!I don’t understand why a country as wealthy as yours can’t do the same!

David61
September 16 |

If you are lucky and the facility you use has a 620 slice CT scanner you get the same or better results in 5 minutes and less cost. Visit Topic or reply to this email to respond.
In Reply To

WestOfPecos Parent of a Type 1
September 16 |

I believe this is your insurance copay, i.e. what you end up paying after your insurance picks up the rest. This survey site writes that the average cost of cardiovascular stress tests in the US is $4,400, and that it can go up to $11,700 (accessed on 9/15/2017) Full disclosure: I am not sure h… Visit Topic or reply to this email to respond. To unsubscribe from these emails, click here.


#14

Hear hear!!


#15

Debatable. $20 Trillion US debt.


#16

Our country has Debt as well, but still manages to steer money into health care $.
Employees and businesses alike share in this cost, with monthly deductions.

Our Provincial Government supplies free insulin pumps [every 5 yrs] + $2400 cash every year to support Type 1 Diabetics.
Not sure how regular folks without insurance could afford these things?


#17

Canada appears to be more fiscally responsible. Canada’s debt / GDP ratio is about 65%. The USA is around 105%. It is unsustainable.


#18

It’s bad. But, I’ve been reading this book in an effort to understand. A play button at the bottom of the page links to the audio interview:

American Sickness


#19

What tests should endos be doing to monitor for the development of APS? I have Type 1 and Graves’, and when I was diagnosed with the latter the endos at the hospital
actually did mention Addison’s and asked about symproms. But that was almost three years ago, and I don’t believe they nor my current endos did any specific tests. It may be that screening tests are not done in Canada - my understanding is that tests need symproms to be ordered. I have looked up Addison’s so that I’m aware of the symptoms. I don’t want a repeat of Graves’ where I had no idea that I was at risk or what the symptoms were until I ended up in emergency.


#20

WOW, that sounds like a Michael Moore movie about corruption :frowning:
I guess since Canada has 1/10 the population of the USA it was easier [?] to pass Health regulations in our Parliament, way back in 1972 to establish a universal health care system.
Not sure if your country could achieve this now? Or if the politicians would want to fight the rich drug companies?