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.
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!
I have an invisible illness
A Doctor Diagnosed with Adrenal Insufficiency