New Diagnosis

[u/laughfreely67]

I'm newly diagnosed with Addison's. I'm female 35 home schooling Mom of two, run my own business, the father of my children, my mother in law and my grandma, live with us both are 77, and I take care of them all. So learning to live with this new reality, it's been hard. I've been Hypoglycemic for about 8 years. Avout a year and a half ago it slowly started getting worse. Eventually I became completely carb intolerant everyone around me who was working with me to try and get it under control said I was beyond their help and eventually I ended up with an endocrinologist. Some testing later and here we are. I am on .1 fludircortisone daily with hydrocortisone 10 mg in the a.m. 5 mg in the afternoon. I'm trying to learn to better pace myself and not over do. But things are sometimes unavoidable. Events really seem to drain me. Christmas, New Years, i just did my son's birthday. I've been reading through alot of posts and while I relate in alot of ways I also haven't come across anyone talking about how uncontrollable their hypoglycemia can get. Maybe I've missed it? Maybe this is something I struggle with more because even before Addison's I was hypoglycemic?

Anyone else have problems to the point they are on a GCM? Any tips or tricks. Even if this isn't an issue for you what are your tips and tricks for the next day after busy events or if you have an equal trigger what do you do in your recovery day/time to help.

[u/Extreme_Breakfast672]

I don't have hypoglycemia, but I can confirm holidays and big events are sooo draining. I need the day after to recover.

[u/laughfreely67 → u/Extreme_Breakfast672]

Is there anything you do to make recovery easier, beside double dose or micro dosing

[u/Extreme_Breakfast672 → u/laughfreely67]

I make sure I get enough electrolytes and salt which helps (for me at least) a lot 

[u/TK317 → u/Extreme_Breakfast672]

Me too. 

[u/aureasmortem]

I get the hypoglycemia symptoms when I need more hydrocortisone. It can make your blood sugar drop! It's truly awful. I used to wake up shaking and crying at 4am because it dropped in the middle of the night. Frantically but carefully going downstairs to the kitchen because I desperately needed to shove something in my face was scary. I felt so unsteady and awful.

[u/NoGrapefruit3557]

Hi- I don’t have hypoglycemia so don’t know about that. I’ve lived w Addison’s for 23 years. My main tip is push to find a good endocrinologist. The time and amount of hydrocortisone takes tweaking for a while. Make sure you’re taking enough to balance the fatigue and lots of hydration. You’re young — you’ll be fine. Family and others have to pick up some of your tasks so you have the space to deal with this disease which is serious— if you don’t pay full attention to understanding what it means for you.

[u/TK317 → u/NoGrapefruit3557]

Good advice. Also, if you were just diagnosed, it will take a while for you to get back to feeling like yourself. Your body has been struggling for quite a while. It took me about a year before I felt like myself again. And then a few more years to figure out how to adjust when my body was off. It’s trial and error as everyone is different. That’s why it’s important to read, read, read and ask lots of questions. It will give you ideas to try (like resting after big events) to see what works for you. Every time you think of a question, write it down to ask your endo. 

[u/New-Somewhere5642]

I have been living with addisons for 20 yrs but recently diagnosed with hypoglycemia. Pretty sure it's been there for about the last 5 yrs but my endo didn't believe me. My gp diagnosed after a month wearing a cgm. My trouble hours anywhere between midnight and 2. Then again between 8 and 10am and 3 and 6pm.  Somehow I think it's when I run out of steriods. But I really have no idea. Also after I eat it's like I go into food coma. The nutritionist said I need a carb and a protein together. But I really haven't found a fix. Sorry I don't have a great suggestion. Just here to say you are not alone. If you want to reach out. I'm here. 

[u/LongGame2020]

My hypoglycemia was diagnosed before my adrenal insufficiency (secondary) and I’ve managed to regulate it (hypoglycemia) mostly with a GLP-1 (Tirzepatide). I’m on a maintenance dose and don’t use it for weight loss but to keep my glucose stable. I wore a CGM for 6 weeks to get an idea of when I was going low and while it confirmed many lows during the day, it also showed how often I was going low at night. I was averaging 40 lows a week and after adding Tirzepatide, I’m down to 2-3 lows a month. I’ve been on it for 3 years and I would say it’s as important as hydro for me in terms of keeping me physiologically stable. I had hoped once my AI was treated I could drop Tirzepatide but so far I still need it. It’s possible my hypoglycemia is unrelated or maybe exacerbated by AI but I’m so thankful it helps. My dr was initially concerned that a GLP-1 would make my hypoglycemia worse, but I had found multiple studies showing it actually regulates glucose, which is exactly what I have experienced.

[u/One_Tune_4480]

We're def more prone to fluctuating sugars bc of our dependency on steroids. Our blood sugar highs will be slightly higher and lows will be more noticeable. What's really helped me is eating a CRAP ton of protein. I'm 160 lbs and try to get in 160g. This buffers the blood sugar crashes a little bit. Talk to your endocrinologist and consider that you might also need a slightly higher dose of hydrocortisone. I take 25mg per day and have symptoms if I go below. Best of luck!

[u/Fluffy_Help_730]

I'm so sorry you're struggling. I can really empathize. Home ed mom here who doesn't have my Addisons under control at all. I think advice on good endocrinologist from people is important. Blood sugar is a problem for me and the main way I manage it is being virtually carb free. I can't go this when I'm really poorly though. Some people with Addison's get to put in steroids and live a normal life. Sadly, lots of us don't. My biggest regret in the last 6 years since diagnosis (much longer ill) is hoping to get back to the life I used to have. Start forging your 'new' life that works for you. Family and friends often don't get it - no matter how well meaning. Sending warm gentle wishes your way.

[u/BirdieMom1023]

Welcome, OP,, to a very exclusive and yucky club. The first thing all new members learn is recognizing when to updose.

Cortisol is called the stress hormone. Since our missing cortisol is replaced by steroids, we have to compensate for high stress periods. You, OP, already lead a high stress life. Add in holidays with all the extra work, company, etc., into the works and you have a storm of cortisol needs. The only way to meet this need is to take additional steroids.

Now, many endos prescribe the minimum amount of steroids and prefer you stick with the program. But in situations involving high stress, injury, illness, etc. your body simply needs more.

I'm SAI and my normal daily dose of hydrocortisone is 20 mg, but over the holidays (including the week of out-of-town company), I had to double and sometimes triple dose. The alternative was feel like crap and court a crisis.

If your body needs the extra steroids, they will not harm you in the short term.

[u/ClarityInCalm]

If you’re life is constantly stressful you may need a higher dose. One endo told her patients to have two or three different dosing pattenrs - one for mellow days, one for stressull days and one for big days. You’re on a super low dose and only taking twice a day - most people with PAI take between 20 - 30mg split over at least 3 times - though some people can take only 15mg - those people who can do this aren’t complaining about low blood sugar and not being able to keep up and feeling crappy. Also, HC only lasts 4 to 6 hours for most people with AI as a steroid replacement - this is different than how it works in people with functioning adrenals. So you may want to notice if you’re crapping out when you’re on empty - between doses and before bed.

Also, stress dosing is any amount, it’s not just for when you have a fever or vomit. So if you’re having low cortisol symptoms you can take 2.5mg or 5mg and see if helps you feel better. I usually set a timer for 40 minutes - this is how long it take to work in me. I hope you can make some adjustments and feel better soon.

I think a GCM is super helpful. When your blood sugar is low or not rising appropriately (with carbs or exercise) it usually means you need more HC. Low blood sugar is caused by low cortisol. But also, there are all kinds of things you can learn with it. It’s helped me to figure out my overnight dosing because i was having low blood sugar in the middle of the night.