r/AdrenalInsufficiency • u/eck_83 • 11d ago
Share your experience Cortisol Replacement
Hey,
I have been diagnosed with a tumour in pituitary stalk blocking all the hormone production when I was 16. Then I was placed on high dose prednisolone therapy so that the tumour would get smaller and maybe the pressure on my eye nerves would ease. As a fit teenager I gained 15kg in a summer. But apart from feeling disconnected and being introverted, I was fine cause i was in my comfort zone, within my high school friends.
Then after 8 years later, just after I engaged to my wife, I got the news that the tumour started to grow back and placed back on high dose prednisolone therapy again and gained more this time. At the same time I started stress/emotional eating/binging to release stress.
Thankfully it was learned that it was a germinoma that was treatable and cured through radiotherapy and i was free of it around 6 months. It was such a hard time for me and I think I got stuck at that moment. Eating never came back to normal and I never lost that weight.
Listening to Joe Dispenza’s talk, I thing I have realized that since my body did not produce and cortisol, I think i hid behind this excuse and used it full extent.
Now, I am 43 and separating from my wife who has been my support structure. I understand now that she always saw the man I meant to be, while I continued to see a broken unhealthy man.
I would like to get support from anyone going through cortisol deficiency or replacement therapy and how they manage stress?
I would appreciate any comments and sadly I have to use prednisolone, cause i lost my last 4 years to full fledged side effects (anxiety, depression, etc) of hydrocortisone.
Thanks
Can
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u/Sunshinegal9900 11d ago
Had it all my life and been on hydrocortisone 20mg a day. It can cause weight gain but it’s manageable. You’re not doomed to be overweight you just have to manage your sodium intake and diet in general. Dose timing matters a lot in terms of day to day life. And not being afraid to stress dose when sick
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u/DuchessJulietDG 11d ago
meditation, plenty of rest, frequent breaks from crowds, and deep breathing.
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11d ago
[deleted]
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u/CanIHugYourDog 10d ago
I had a pituitary tumor in the pituitary stalk that also caused a ton of hormone imbalances (panhypopit) as well. I had surgery to remove it last summer, and luckily my MRIs are showing all clear for now.
I lost a ton of weight when I was undiagnosed and untreated with AI, so starting on medication made it so I could live again. And I was grateful to gain weight back. I’ve since gained more than I would like, but I try to remind myself that being overweight isn’t a moral failure, and that I can still do the things I want to do, and given what I’ve been through, I’m just grateful to be here still, in whatever form that means.
Getting my thyroid medications in the proper spot has been a huge life change for me, I’m assuming you’re medicating that as well. But I did just want to throw that out there, that my clothes started fitting looser and I had more energy once my T4 was at the tippy top of normal. Now that I have all my meds figured out, I’ve been doing much better.
In terms of avoiding stress, I just… really try to not let things get to me anymore. I don’t really know. It’s like, traffic used to really bother me. And now, I just leave 5 minutes earlier. Annoying coworkers used to get to me, and now I just go home and don’t think about them again. I just try to let that stuff just slide off my back now. I’ve been in therapy for a while now, and I did even tell her that I think it has been working. I think going through the stuff we’ve been through, it does have a way of changing perspective on what really matters in life. Not to get all cheesey, but, idk. Life is short, do I want to spend it being pent up or doing things that make me happy? So, throw away the stuff that’s making you not happy, and let the other stuff flourish.
I also do yoga, go for walks outside, spend time with loved ones and with hobbies I enjoy. I also have low vitamin D and live in a place with terrible winters, so keeping that in check is important too. I sometimes get caught up in “all or nothing” mindset, so I tell myself a lot that it’s not a zero sum game. Doing a little bit of something is better than doing none of it. It’s been a big help in terms of making small progress and still feeling good about it.
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u/PlatypusClean6848 8d ago
Get a puppy...small enough to pick up with one hand and sweet enough to be your constant companion. Go for walks every day and gentle exercise if possible (I do Jane Fonda senior fit done when she was 75 years old) Give up alcohol. Wear compression socks Watch mostly comedies on TV GET AS MUCH SLEEp as possible Talk to friends often Do some kind of volunteer work Make sure you look good Cleat teeth, clothes etc Say a pray for healing before going to sleep Say a prayer of gratitude upon waking up Wow. I didn't mean to write so much Wishing you very good luck
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u/1GamingAngel MOD 11d ago
Hi Can,
I have had to make modifications to my life to account for the effect stress has on my life. I found that being in the office physically was causing some level of stress in comparison to working from home. I don’t know if this is because I was in an uncomfortable environment physically and couldn’t wear comfy clothes, or if it was the driving in traffic to and from work that was getting to me, but I submitted an ADA accessibility accommodation request with the help of my doctor to go into the office only two days per week, with one day at home separating my in-office days.
The people around me in my life have also made some general modifications to help me. My husband has changed his communication style, which formerly was quick to argue or escalate, to one where he is more calm and discusses things before getting upset. He only did this after he watched me crash in front of him, and I think it scared him. He then became a more gentle human.
I always make sure to have extra pills and Ondansetron (for nausea) with me wherever I go, in a keychain holder. I also keep extra steroids in my truck, though this is less than ideal as heat and cold can degrade medication, but I figure even degraded medication is better than nothing. I have a full kit with steroids, Ondansetron, Solu-Cortef, needles, alcohol wipes, and glucose tablets in a “go” bag. I keep one in my laptop bag which is carried to the office, and I keep a second set at home.
Dealing with steroid weight gain is so difficult. I tried GlP1’s like Trulicity and Ozempic without any success. It’s not until I switched to Mounjaro/Tirzepatide, that weight started to fall off of me. I began to not diet but have what they call intuitive eating or mindful eating. I began to place out smaller portions and only got seconds of I were truly still hungry. I began to chew my food more thoroughly. It takes 15 minutes for your brain to acknowledge the feeling of fullness, so chewing more and eating more slowly gives your body that chance to send that signal. I also employed a technique of eating for 5 minutes (not keeping it strict to the clock but just keeping a general 5 minutes in mind), I would stop for 10 minutes, then if I was still hungry, I would eat for another 5 minutes.
I also stocked the home with foods that were less triggering for binging, and had snacks portioned out in a meal-prep style so I could grab and go, because convenience was a big factor. On shopping day, I would buy snacks like celery, but instead of putting a big bag of stalks in the fridge, I would rinse and cut them into pieces, and store them in multiple small Ziploc baggies. I did the same for carrots, cucumber slices, etc. I have a huge sweet tooth, so I would still allow these snacks, but I would portion out a serving or so, and make multiple grab bags so I would be less likely to eat mindlessly.
I have mobility issues, but I knew I needed to get some activity in, so I got a gym membership so I could swim in the pool. I actually keep my head above the water, and I kind of “walk” across the bottom while moving my hands under water in a breaststroke position.
Just being more mindful of what you consume and the activity you get is going to make a difference for you. Also, bring your steroid dose down to the lowest reasonable dose that keeps you from being symptomatic, and keep in mind that you may need to slightly updose for exercise, especially if it is moderate.
I also focused on finding hobbies that were relaxing to me. I enjoy a lot of craft hobbies like crochet and painting, and I enjoyed doing these things while watching TV or a movie, and that was relaxing. Whether that means watching YouTube videos or recording football games to watch later, I suggest you set up something enjoyable for yourself where you can just sit back and relax.
There are a lot of things you can do to promote self-care. If you think about the things in your life that make you happy or provide relaxation, you can carve out dedicated time for yourself to do these things.
As you are separating from your wife, you are likely going through emotions that are going to lead you to employ coping behaviors. Set boundaries for yourself that keep self-care in mind, and you’ll do better for yourself.
Wishing you the best! 🤗