This week I got a letter from my Endocrinologist. I recently discovered that as an NHS patient, I’m able to request a copy of any letters the Endocrinologist writes to my GP and so I received the first ever letter since being told I have Adrenal Insufficiency in 2013. The letter stated I have 4 official diagnosis. Three I agree with most of this but one of the illnesses I really don’t know if it’s correct.
I’m trying to make the most of my life and live the best I can with the conditions I have. I’ve heard the phrase when life gives you lemons make lemonade. This is what I’m trying to do. I’m trying to find ways to make my health the best it can possibly be so I can enjoy being a Mother more and reduce the limitations I face each day.
So, today I wanted to discuss each illness and where i’m at, what i’m doing to progress in each area and how I’m feeling.
Well, I was originally diagnosed with Adrenal Insufficiency in July 2013. At first I was told it was Addison’s Disease (Primary Adrenal Insufficiency) and then I was told it wasn’t Addison’s Disease, it was Secondary Adrenal Insufficiency. I was then sent a letter stating I had Tertiary Adrenal Insufficiency and boy did I feel confused.
In 2015 I was finally told that the problem is the Pituitary Gland which despite having no Tumour or visible damage, it simply does not work from time to time. What was this supposed to mean I asked? Well said my Endocrinologist. Sometimes the Pituitary makes the ACTH hormone which tells the Adrenals to produce Cortisol and sometimes it does not.
Someone with Addison’s can not make any Cortisol whatsoever due to the Adrenals not working. This is the same for someone who has had the Adrenals removed. For me however my Adrenals were not functioning in 2013 ad 2014 and the start of 2015. However according to my Endo, he now thinks my Adrenal glands are functioning a tiny bit. I was told they had stopped working and would never work again and now I’m told they make a little Cortisol but not enough to come off steroids and not enough to prevent an Adrenal Crisis if I were to get unwell or be placed under stress.
It does not make sense to me. I started on 60mg of Hydrocortisone and then went down to 30mg then to 25mg and back to 30mg and down to 25. I had three Day curves and lots of other tests and in August 2015 I was reduced down to 20mg. I was really hard for my body. I was very sick for about 8 weeks and eventually the regular crisis and blood sugar hypo’s calmed down a little. My Adrenal Insufficiency became the most stable it’s been since 2013 but it’s still a problem and there is still more that needs to be done.
My GP has finally referred me to a different Hospital to seek a second opinion and see what more can be done to help. I do feel the Adrenal Pump would help me by mimicing the natural cortisol circadian Rhythm but it’s just so hard to get the pump in the UK. I am still saving up for the pump and hope my next Endo may consider this as an option for me. For now I am just living with the illness, saving and waiting for my new appointment. I estimate in 2-3 months time.
Severe Human Growth Hormone Deficiency
I was diagnosed with severe Human Growth Hormone Deficiency officially in October last year. I have had difficulties for many years and was continuously told I had Fibromyalgia. I do not have Fibromyalgia. I used to read up on the illness and it didn’t make sense. I was even told by my Endo I must have a muscular condition as my muscles grew weaker and weaker. As it turns out, I actually had a serious hormone deficiency which causes.
- Reduced muscle mass and strength
- Reduced bone mass
- Impaired concentration and memory loss
- Increased Body Fat
In July 2015 my Growth Hormone was tested and the Endocrinologist realised I had a serious problem. I was finally started on daily Growth Hormone Replacement injections 6 weeks ago. When you go onto these injections you have to start at a low dose of 0.2mg and work your way up to the right level. For me, I will increase my growth hormone dose every six weeks until I’m at the correct level. Once I’m at the correct dose level, it will take between six months to a year for my body to recover.
It’s going to be hard to rebuild my muscle strength and bones but I feel they are growing and rebuilding and my body is slowly improving one day at a time.
When I was put on a too high dose of steroids my weight ballooned. I’ve always had struggles with weight however the Adrenal Insufficiency combined with the Growth Hormone Deficiency and my inability to walk around or exercise without serious pain meant I gained a while lot more weight and I ended up at around 21 stone.
In 2014 my Endocrinologist asked my GP to refer me to the Weight management team. I was told I needed to lose 10% of my body weight on my own to be considered for medical weight loss support. I worked really hard to lose weight and got down to around 19 stone. I did this by reducing my diet to 1200 calories a day and felt like I was starving. After a year of weight loss and attending classes I was referred to the Bariatric team.
I met the criteria under the NHS rules to have weight loss surgery. 18 months after my weight loss journey began I had a pre op assessment and was given a date for my Gastric Bypass. I never made my plans for bariatric surgery public until I was finally given a operation date.
I went on a 2 week Liver Shrinking diet and on the night before my operation it was cancelled. Their were too many sick people in hospital and no bed for me to recover in so I had to continue the Liver diet for 2 more weeks. I’m still on the diet and awaiting my operation which is now scheduled for the 2nd of February. The diet I’m on is really hard emotionally and physically. I’ve been starving on only 600 calories a day. I became dangerously low in Zinc, my face has gone all spotty for the first time in my life and half my hair has all ready fallen out. I’m more exhausted than I usually am and feel mentally and emotionally drained.
Most of my friends are supporting me, however I have had someone challenge the fact I’m having surgery on the NHS, saying I am not as big as someone who was declined. Well to be honest everyone has different illnesses and situations and I lost the 2 stone I was asked to lose in order to be considered. Not only this, the NHS gave me the wrong medication dose in the first place causing me to balloon in weight and the cost of the operation is around the same as three hospital stays. The operation will support me to lose weight and be healthy to the point I will probably have far less hospital stays.
At the end of the day my operation is next week and people who are jealous or haters can go jump because I’ve paid my taxes.
Chronic Fatigue Syndrome
Well this is the one illness I’m really unsure about. You see I am told I have Chronic Fatigue Syndrome which is an inability to feel refreshed and muscle weakness brain fog, exhaustion etc. However I really don’t think I do. You see, I think the AI and GHD actually cause my exhaustion and muscle weakness and strangely enough every time I have had an Adrenal Crisis and switched to IV steroids from tablets, something miraculous happens! I can walk. I have strength in my muscles, I feel refreshed. Surely if i had genuinely had CFS that would not happen, but I really don’t know. I guess time and the correct treatments for the other conditions will show whether I do have this or not.
At the end of the day I am obese, I suffer from chronic exhaustion, muscle weakness, bone pain, muscle pain, headaches, concentration issues, brain fog and ongoing Adrenal issues. I find it much harder to speak than I do to write. I don’t know why that is. When I speak I cant get the right words out and often forget what I’m saying mid sentence but when I write the words flow and it’s the one thing I can do. If I get up and walk round though I cant write. I can only write if I stay in my bed and don’t go places.
If I go out I suffer for several days and get really ill again. Another thing I cannot do which is purely down to being ill is maths. I cannot add up or calculate the way I could as a student and teacher. It’s as if trying to solve a logical problem of do maths or a budget confuses my mind and I just cant do it. I can write but I cant do logic. I also get anxious when I’m in pain.
So this is where I’m at. Im waiting to see a new Endo for my AI, I’m rebuilding my growth hormone and hopefully muscles and bones. I can go somewhere but I will be unwell afterwards (so I pick carefully what I do). Sometimes it may be one outing a week or if I have hospital or GP appointments I don’t have a choice and I have to go out more. I’m about to have a major life changing operation to help me become much healthier. I still have to use the wheelchair for long distance and on my really bad days. I stay in bed a lot to help reserve my energy and the only thing I can do really well is write. So I’ll keep writing and sharing my life, raising awareness for Adrenal Insufficiency and Chronic illness and other subjects I care deeply about. I’ll share my story and hope that it can inspire and help others.
I feel blessed that I am able to write with lots of breaks, rest and support from my husband and I’m grateful to have made so much progress in the last year. I’ve been handed a whole pile of lemons and will keep making my lemonade and making my lfe as sweet as it can be.
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