Does anyone have information on Addison's disease and T1 diabetes in conjuction with each other? Or does anyone know where I can go to find info? Thank you in advance!
I knew nothing about Addison's disease but your question prompted me to do a Google search. There is a lot of research and informational articles onlive about Addison's and type 1 diabetes.
Do you have both? Does the hypoglycemia hit randomly?
It is actually my son who has been a T1 diabetic for almost 11 years now, and has recently been diagnosed first with depression, and now Addison's Disease on top of the diabetes. I have been doing Google searches as well, but have not been able to find much on the diseases interacting. I can find Addison's info, and of course T1 diabetes info but not the two together. there is a great Addison's site out of the UK which I am utilizing and trying to piece it all together. My son required quite a large amount of insulin through the pump daily up until about 5 months ago when he suddenly started needing less and less. He is now taking about 1/4 of what he was taking before and we are still hitting hypoglycemia left and right. We have literally had the meter telling us he was low instead of a number. We have a continuous glucose monitor on order and should get it in a few days to help monitor and alarm us sooner. Kyle has no energy to get out of bed and is having trouble keeping food down when he can eat, which isn't often. His endo said he is in complete adrenal failure and started an aggressive dose of hydrocortisone for the next few days to try to kick start him before they lower the dose to what will be his daily norm. Any information or website you might be able to direct me to would be greatly appreciated! We have contacted NADF for info on a support group hopefully in our area.
It seems like you're doing everything you can. That's rough to have sporadic lows with your son unable to eat. Have you visited with a dietician about meal replacements? I'm not a fan of glucagon to treat most lows, but in your case it is important to have. Make sure your doctor gets you a prescription if you don't have one.
I'm so sorry you're going through this. I can't imagine how stressful it must be. I will pray for your son and hope the steroids are helping. At the very least steroids usually inhibit insulin, so it should raise his blood sugar.
You've probably seen the basic links I found
I have had T1 since 1977, I was diagnosed at age 11, I am now 48 years old. I was diagnosed with Addison’s Disease, and hypothyroidism at age 31, 17 years ago. Throughout the years I have gone through multiple steroid combinations. It has not been easy, but once you get a proper dose of steroids, you feel relatively “normal” I use a Medtronic insulin pump, with a continuous glucose sensor as well, it has helped me to prevent those horrible scary, midnight lows! There’s nothing worse than to wake up in the middle of the night & not know why the lights are on, and my wonderful husband is asking if I feel better, after being injected with glucagon! Which a definite must with T1 and Addissons. I don’t like having to use it, but it has saved my life on multiple occasions! My Endo has been really great with keeping my prednisone dose as low as possible, but still giving the energy I need to get through the day. I also take Fludrocortisone in combination with prednisone. This combination seems to keep my Addissions in check. as far as the depression goes, I know I thought I was depressed when first diagnosed, which took almost a year! But after I was on the steroids, and my energy came back, I was no where even close to being depressed! Everyone is different, which may not be the case for your son. If you have any questions feel free to ask.
Thank you for your post. I have a similar history to yours. I was diagnosed t1 when I was 3, then with Addisons when I was 19. I’m now 35. Three years ago, I moved to a new city, and I’ve been on the hunt for an endocrinologist who recognizes the balancing act these diseases are. (I also have hypothyroidism.). I have a doctor now who doesn’t get it, but she sort of tries. I’m very disheartened, though. It is nice to hear you have such a good doctor because it gives me hope!!!
I was diagnosed with Addison’s two years ago and have lived with T1 for 12 years. I am 14, and have a grouping of endocrine diseases known as polyendocrine syndrome type 2. In addition to T1 and Addison’s, I also have Grave’s and hypoparathyroidism.
I was very lucky when I was diagnosed with Addison’s, as I had not yet gone into an adrenal crisis. After the diagnosis, I was extremely depressed. My pedriatic endocrinologist was clueless on how to treat Addison’s, and so I ended up with an extraordinarily large dose of hydrocortisol, steroid fat, and high blood sugars. After searching for a doctor with experience with the 2 diseases, I found an endocrinologist who turned my life around. I have an A1C of 6.8, and feel “back to normal.”
One of the harder things with Addison’s is that there is no concrete way to tell if you are treating yourself correctly. With T1, there’s an A1C test. However, with Addison’s, it is a guesstimation based on a few different labs (Sodium and Potassium, mainly). The primary way to tell if your dose is correct is based on “how you feel.” For me, my dose fluctuated, because I had no idea what feeling “good” was. Another problem that I had was the fact that I was unwilling to take a large dose of steroids due to not wanting to gain weight, as had happened previously. Also, the symptoms of being low cortisol and having high blood sugar were the same, which does differ from person to person. My new adult endocrinologist changed me from shots to the pump, so that my basal could be increased when I took steroids.
Now I am pretty regular with T1 and Addison’s. I take 10mg of hydrocortisol in the morning with breakfast and 5mg (if needed) at lunch.
Good book to read if you are having trouble with weight and Addison’s (like I was) or just want some help with T1-
Dr. Bernstein’s Diabetic Diet or Dr. Bernstein’s Diabetic Solution.
His diet may seem harsh, but he has lived with T1 for over 50 years, and the diet has helped my high blood sugars drop to normal.
Steroids only complicate the original issue, serving as a bandaid fix, at best. I’m in adrenal failure and I’m finding great success with the only true medicine to jump start the adrenals, FOOD! Juicing has been a godsend as digestion is not reliable in these stages of AF. Also learning how to pair foods. And following the life basics helped.
I suffer from extreme jolts, almost like mini seizures from the vitamin deficiency I suffer. My cells do not regenerate. I have severe osteoporosis as well from AF. Also vitamins, don’t waste your money. They’re synthetic and add to the problem. My biggest reward has come from adding celery juice to my intake. Message me if you have any questions on what’s worked for me! Much love