Adrenal Insufficiency and weight loss can be an ongoing battle for many adrenal insufficient patients and today I would like to share my experiences so far attempting to lose weight while on steroid medication.
Last week I went to the NHS hospital for my 6 month check up with the Endocrinology team. I was weighed and found out I had gained 2 stone in six months.
The Battle Between Adrenal Insufficiency And Weight Loss
When I first got diagnosed with Adrenal Insufficiency I would see the Doctors much more frequently. I was in and out of hospital having adrenal crisis and my symptoms were so bad that my body was, as my private Endo put it, shutting down.
Since seeing a private Endocrinologist and getting set up on an Adrenal pump my adrenal condition has become manageable.
However, I continue to have an ongoing battle with my weight.
Secondary Adrenal Insufficiency And Weight Loss
Managing Adrenal Insufficiency is not an easy task. I have to always be aware of my cortisol levels and because there is no quick test like a blood sugar test (for diabetics) I have to go by my symptoms and how I feel.
Adrenal Insufficiency is somewhat of a guessing game. It’s not fun at all but over the past 4 years I have finally got to a point that I can recognise my Adrenal Symptoms even if I don’t know what is causing them.
Cortisol levels change due to different stresses on the body so as soon as I get symptoms which can happen every day, I do several checks. I first swallow to see if I have the start of a sore throat, I check my temperature for fever and check my skin for infections.
What Causes My Low Cortisol Symptoms
For me, the slightest infection will cause low cortisol symptoms and mean I need double steroid medication.
If I get a small infection on the skin the size of a 20 pence piece it makes me unwell. It gives me pain in my large muscles, a feeling of weakness, lethargy and dizziness.
Sometimes I will want to vomit and if I don’t get on top of the infection fast enough my blood pressure will start to dip and I will get confused and feel like collapsing.
Adrenal Insufficiency And Skin Infections
Often when a patient with adrenal insufficiency stands up and their cortisol levels are low, they will feel like they are about to collapse. I have learnt to stand up more slowly and not to rush.
I never had infections on my skin growing up or before I developed Adrenal Insufficiency.
One of the side effects of the hydrocortisone medication when you don’t make natural steroids (natural cortisol) can be the skin becoming easily infected.
Skin infection can be a continual cycle. Skin infections equals increased steroid meds that treat infection, extra steroids means a weaker immune system and skin more prone to infection.
Extra steroids also lead me to gain weight.
Low Cortisol Levels And Weight Gain
Some people on steroids say that so long as they are only replacing the exact amount needed for the body, you won’t gain weight but for me and many others I know it’s not the case.
In fact, I have noticed from the many people I talk to with my condition that those with Addison’s Disease (primary AI) tend to be skinnier and those with Secondary AI from what I have noticed have more issues with weight gain.
It’s true and I think I know why.
With Primary AI, your adrenal glands are damaged and you replace the cortisol you need with medication and that’s it.
However with Secondary AI, the adrenal glands don’t work due the pituitary being dicky or not functioning properly.
So if my pituitary one day manages to send more cortisol to the blood stream then I may end up with a little too much cortisol.
It’s swings and round a bouts. It’s a huge guessing game and even when I am on what appears to be the perfect cortisol dose, I feel starving and super hungry.
Gaining Weight on Steroid Medication
I gained a ton of weight on steroids, many stones. I asked my doctor why I had very low cortisol but still gained weight.
In fact, I was around 21 stone at my biggest and so I went on a diet of 800 calories a day for two years.
I lost weight in the first 4 months and then remained the same until I had my gastric bypass in March 2016. I had a gastric bypass to help me lose more weight and I have to say it did not work as expected!
My bypass helped me lose weight in the first 6 months after the procedure due to the tummy healing and me not being able to eat hardly anything, however after my tummy healed, I started to regain the weight I had lost.
Hard To Lose Weight On Steroid Medication
It’s sad but it’s true and I am not the only one with Adrenal Insufficiency who has had this happen. I even know kids with the condition who are seriously overweight and it’s all down to a combination of steroids and inability to exercise and run around like normal kids.
For me I was disappointed that my gastric bypass failed. In fact, I went to see a dietician about it. I was told that with the medication I am on, it simply makes it difficult. I can eat really healthy and I will still gain weight. It is down to my medication and the fact I am not well enough to burn off weight.
It is hard when you give up so much, have your stomach made small and bypassed only for the procedure to not work out long term.
I have been quite sad about it, and disappointed and avoided talking about it on the blog for a while now because I guess I had hoped I could find a way.
I have accepted that this is how it is and maybe it is time to try something different and new. I’m looking into Weight Watchers as a potential option.
Even if I eat a low number of calories and do what others on healthy eating plans or diets do, I still gain weight and it is frustrating.
Accepting My Body As I Am
It really is a hard pill to bite but at least I tried and at least I lost something.
Just imagine how big I would be if I had not lost anything at all! I am weighing 17.7 stone which is much less than 21 stone but then it is no where near my goal or the healthy BMI weight I once dreamed of reaching.
So as I contemplate what I will try next to try and battle the steroid induced weight gain, I am focussing on continuing to manage my adrenal symptoms as and when they come.
I am also trying to improve my vitamin D, Zinc, Folate , B12 and Iron which are all out of wack and adding to the stress and pain I am in. I’ve had several Iron Infusions procedures recently to help with my low Iron levels.
Chronic Illness And Weight Gain
Being unwell is a constant battle and it can get you down. Being overweight and unable to exercise and make you feel like crap but I am learning and managing my Adrenal Insufficiency as in I am treating it on a daily basis as I need to and resting when I need to and that is what is important.
Yes I am overweight still but my family loves me and I love me and I am a great mum no matter what size I am. I will keep focusing on getting my adrenal health as controlled as I can.
I will keep working on my Iron and vitamins and maybe next year if things have improved I can revisit the weight issue. It is currently the last thing I am worrying about as staying alive and getting the right medication take priority.
When I visited the Endocrinology nurse she was not pleased that I had regained 2 stone in 6 months and neither was I but the reality is.
I had low Iron and was stuck in bed a good 4 months waiting for an infusion and I am still suffering and unable to do much physically so until it’s all much better the weight will have to wait!
And like I told my Nurse, anyone else in the same predicament, with the same health issues might be even more bigger than me because let’s face it, I have been to hell an back to try and lose and not everyone would do that.
You may find the following content useful.
15 Facts About Addison’s Disease
What’s it really Like to Have Adrenal Insufficiency
Children have Adrenal Insufficiency Too
Why the Adrenal Pump is a brilliant treatment for Adrenal Insufficiency
From Cancer to Adrenal Insufficiency – A Brave Story
My First Magazine Appearance and the fight to Kick Adrenal Insufficiency in the Butt!
Erica L. says
You have a strong mind and spirit, and that’s what’s making you move forward. Weight issue is a serious thing, especially for children that get’s bullied at school.
Across the miles, I send love and prayers to you. I hope there is some new medical discovery that can ease your pain and allow you to regain normalcy in your life and give you vibrance and energy. You’re very brave to share your personal adrenal-insufficiency story. Stay strong.
Thanks so much. If it helps someone else then this is worth sharing.
Corinne & Kirsty ? (@corinnekirsty) says
It must be so hard. I didn’t know about this condition. Weight issue is hard and weight loss requires a lot of work. I think you are really strong and working really hard so I hope everything goes well in the end.
Sarah Bailey says
It can be so horrid how illnesses have side effects like putting weight on, people often think it is so easy to just lose it but it is near impossible and it makes you feel awful as well.
It does suck when medication and health make it hard to lose and easy to gain!
I’m so sorry to hear about your struggles with weight and illness. It’s great to know that your spirit is strong and you keep trying, thats whats important. Well wishes on your journey.
thanks so much. It is tough but a battle I will keep on fighting.
Esse D says
First I will say you are a trooper. I have a brief stint where I had to take steroids and I felt like my weight was starting to take flight. I can’t imagine the efforts and great care you have to take to manage!
It does make you balloon big time and even with a gastric bypass I still gain.
Weight gain is so difficult to deal with, especially when it’s caused by so many different health issues. Hang in there.
Thanks 🙂 Will do!
Ruth I. says
Always look on the positive side of everything. I know it is not an easy journey and battle but I hope you’ll feel better soonest.
This was an interesting read for me. I didn’t know the difference or a lot about this. I imagine this would be frustrating.
It can be. It’s good to write about it and say how it is.
Michelle Gwynn Jones says
I am overweight. So far no one has found a medical reason for that condition. Okay, even I know it is me – I try to give myself incentives but nothing works. Good luck on your struggle and I hope you will find the right balance for you.
It’s hard to get the balance right. Thanks for commenting.
Very strong post — keep moving forward! I know someone with a similar issue.
This is good to know. I knew a bit about adrenal insufficiency but I now I know more. Great one – thanks for writing this!
Jessica Taylor says
You are so strong! I have no idea if I would be able to be as persistent as you!
I hadn’t known much about adrenal insufficiency until now, I can imagine dealing with the weight fluctuations and then not being able to lose it can be frustrating. However, you seem very smart and strong, you’ll get through it! Thanks for sharing!
Sondra Barker says
Sharing your story is such a display of bravery. I know it can be difficult to talk about so thank you for being so open so that we may all understand your illness.
Your welcome. I appreciate your comments.
I am so sorry you have to go through this. I have a family member who has health problems and is also seeing an endocrinologist at the moment.
Sorry to hear this. It is tough. I hope your family member improves 🙂
I can’t even imagine how difficult that would be to deal with all of that. You are definitely an inspiration to others in this.
Chuck Vargas says
Such an interesting topic to read. Lately been reading this kind of topic in the newspaper here
thanks so much! 🙂
Rebecca Swenor says
Meany people struggle with many different illnesses. Weigh control can be a big downside to meds or the illness. Just keep on fighting and don’t give up.
they sure do! I will keep going!
Jennifer L says
I can’t even imagine what youve been going through. It can be so frustrating to have to go through everything you go through and then have things topple over it. Please stay strong and keep pushing forward.
thanks so much. I will keep pushing forward and hopefully lose more weight eventually.
It’s so unfair that to be healthy you have to take something that makes you ill and fatter. You can’t walk around with a sign saying ‘it’s the steroids that make me fat’ so the public and drs alike will judge – ‘if you ate about less you would surely lose weight and be able to get about more’ even when you are dieting so incredibly hard!! This it what scares me about starting steroids especially as it seems my adrenal gland and my pituitary gland aren’t working properly, so from what you’ve said having secondary will definitely make me fatter ?
You have every right to be upset and angry that going through a gastric bypass wasn’t enough to keep the weight away. That’s a change for life and you still didn’t get the results you have sacrificed for. So unbearably unfair.
Thank you for sharing and not giving up despite the constant challenges, it is inspirational. X
Girl I so feel your pain! After I was started on steroids I gained 200 lbs and I barely eat at all. I have no appetite. Food doesn’t sound good or taste the same. I was denied for gastric bypass because of co-existing diseases. :(. I just am stuck. Stupid steroids. 🙁
Well wishes on your journey. I know the struggle of weight loss and an illness all to well. However, I believe in deterination and you have tons of I. My you overcome this challenge and thanks for sharing.
Thanks. It is a battle but I am surely getting there one step at a time.
Hi, I think we may have lots in common….I’m on the east coast (USA), could we chat?
sure… you will find my email on the blog.
Su Mucheng says
Your story inspires me to loss weight and live a healthy lifestyle. Thanks for posting.
Wow, your story was so inspirational and basically mine in a nutshell. I’m just now feeling better and trying to lose weight but one day I’ll
Be down 5 pounds and a few days later back up. I agree it is much harder to lose weight with secondary AI. Hang in their and know you are not alone in this struggle and yes we are still great Moms to our kiddos.
We sure are and yes it is so difficult!
Irene Lawrence says
This is such a great article and a condition that affects a couple of my clients. Hope you don’t mind but I’ve shared it over on my facebook page. Good luck with the move to NZ!
Mody Stampoc says
I’m so embarrassed and anxious about my weight gain. I have secondary AI. I am on steriod medication, I am obese with a very high BMI and I just have to accept it, accept me for me and if anyone has a problem with that then I have to let them know I have secondary AI and that’s why I am the way I am.
Hi my name is Dayna,
Thank you so much for sharing your story. I have Addison’s disease and hashimotos disease. After I had my last child I was at my largest weight. Over 200 pounds. I replaced all bread with corn tortillas and cut out sugar and all fruit and ate lots of protein and vegetables and beans. I only drank water and unsweet tea and coffee with half and half and the only exercise I did was walking. At that time my hard work paid off completely. I went from 200 to 127 pounds in one year. Everybody was really proud of me and I felt like I had control over my weight with this illness. Fast forward 7 years… I discovered alchohol. Alchohol has completely sabatoshed my weightloss. I’m now up to 171 pounds. The new year is about to start and I’m going to go from having it several times a week to only on special occasions. Once I cut that out I know the weight will come off because I eat very healthy but the drinking makes it impossible to lose weight. I totally understand your struggles because I am going through what you are. I have to work my butt off to lose 1 pound! We should swap emails. Thank you for sharing. – Dayna 😊