On Friday morning about 4am I woke up with sharp stabbing pains in my abdomen. It hurt really bad. I sat up and my body was weak. I could barley move my muscles. I felt dizzy and confused. I had a sudden urge to use the bathroom, the stabbing pains getting stronger.
I dragged by body to the toilet and had the most painful runs. This wasn’t due to a bug or infection. Diarrhoea is one of the nasty symptoms when your body becomes too low in cortisol. The stabbing pains were horrendous. I wanted to throw up. I cried and moaned as I became more dizzy and weak.
I tried to wake my husband. I called him to help me. I could feel my body getting weaker. My husband did not wake up. He was in a deep sleep. I cried some more. My seven year old daughter woke up. She went and got my emergency meds and brought them to me. By this time I was too weak to move. My child bravely brought me my sick bucket, the one I keep permanently by the side of the bed as I feel nauseous almost every day.
I felt upset with my husband because he could not wake up. I needed him to be with me and help me. I prayed in my mind asking for help. I then had an asthma attack, the stress on the body was unbearable. My child brought me my inhaler and I took it repeatedly until the wheezing stopped. I continued to feel dizzy and unwell. I thanked my daughter for helping me and told her to get her school clothes on and jump into my bed.
I stayed in the bathroom for 40 minutes weak and exhausted. I finally got the strength to drag myself back to the bedroom. I went and laid down with my daughter and husband. I was so weak and tired I fell asleep.
When the alarm went off in the morning, John finally woke up. I told him what had happened. He really didn’t realise the seriousness of what I was saying. My daughter asked me to tie her hair. I could barely lift my hands and I struggled but finally got her hair into the bobble. My husband sorted breakfast for Sylvia and took her school.
The next thing I knew it was 12pm lunch time. I had slept for 6 hours. My husband gave me my medication. I had again become weak and was unable to lift the tablet into my mouth or lift my drink. John poured the drink into my mouth for me.
Low cortisol effects my concentration and “problem solving” sKills. I get a brain fog. It’s sometimes difficult to work out what to do. It can be too hard to figure out during an adrenal episode. I managed to explain to my husband what had happened while he was asleep and how serious it had been. He checked my Blood Pressure and it was very low. We decided to go up to the hospital, which I should have done earlier in The morning but I was too sleepy and weak to work that out on my own.
John took me to A and E. They saw me straight away and dealt with my symptoms. I was much better after 5 hours and the doctor allowed me to go home to rest with strict instructions to double my steroid dose for the next three days. I did not go into a crisis to the point where you fall into a coma. I never do that thank goodness. I think that may be because I have Secondary Adrenal insufficiency not primary Addisons. My adrenal episodes and symptoms are somewhat different to the “textbook” description, but I now know when I’ve become so low in cortisol that my body starts down the road to crisis. I know my own symptoms and it’s always the same.
I have a mixed bag of emotions. I felt upset that my husband was unable to wake up. I understand he had been working until late into the night and was in a deep sleep but I felt frustrated. I thought to myself, “Do I need a night carer to be here in case this happens again?” It’s not a daily thing though and my husband usually goes to bed on time. I can’t realistically expect him to help me 24 hours a day…but this was an emergency and I needed his help. Neither of us knew I would suddenly run out of cortisol in the middle of the night. I felt guilty that my child had to help me out. Yet she has seen this on a number of occasions and now knows what mummy needs. I felt proud of Sylvia for helping me and being so brave.
So I’m back home and feeling a little worn out. On the way home from the hospital my hubby stopped at Asda and bought Sylvia a Shopkins treat. She is collecting the little characters. We gave her this to say well done for being brave and helping Mummy. I came home to a happy Yoda puppy who was excited to see me. He came and laid by my side, somehow knowing how unwell I’d been.
People with Adrenal Insufficiency don’t “just run out of cortisol” for no reason. There is always a reason for this, but for me often the Doctors don’t know what it is. When at the hospital, I am checked. My chest is x-rayed. My urine is tested for infection. Bloods are taken to rule out other possible infections. The nurse performs an ECG. My blood sugars are tested and this time they were rather high to say I’d not eaten in over 13 hours, (but that is an ongoing problem I am currently suffering from) I am not emotionally stressed or upset or extra happy.
There is only one major issue I’ve been having in the past week and that is severe pain in my hips and legs, knees and feet at night. It’s a stabbing burning pain which theoretically could be an indication of low cortisol in the body. It’s not normal that’s for sure and the pain is often so unbearable at night time that I struggle to sleep and end up moaning and complaining and disturbing my husband.
Theoretically Cortisol drops out of the blood stream after 5-6 hours. For me my morning dose of 15mg lasts until lunch. At 12pm I take 7.5mg but am always feeling weak and dizzy by 4pm even though the next dose is not due until 5pm. When I take my 5pm dose (7.5mg) it drops out of my system by 10pm. Theoretically evenings are the most relaxing time of the day and therefore (the endo says) you need much less cortisol at night. For me evenings is the most stressful time of the day, I am parenting, doing dinner, bath time routine, story time and often putting a typical seven year old child to bed, a child who often does not want to go to bed. This is stressful! Not emotionally but physically stressful on the body.
Often my stabbing pains start up really bad between 10pm until the morning when I wake up. Does the Endocrinologist really expect me to live from 10pm-7am without any cortisol in the body? It is argued people don’t need much cortisol in the night, but surely you need something? Everyday people produce some cortisol at night.
Last time I was at hospital I asked the Endocrinologist to give me a night time dose and was told you don’t need cortisol at night it will keep you awake. Well, actually not having a bedtime dose keeps me awake anyway because I’m in pain and then playing catch up the next day.
Clearly my body is not getting the correct cortisol coverage that I need to function as a normal person. I’ve been on steroid replacement therapy for 27 months now and am still very unwell, still having these episodes almost monthly and feeling sick daily. I’m exhausted and have been told that my dose needs decreasing. This does not make sense to me.
How can a doctor work out what I need based on a day curve test performed from 9am-4pm. I need a 24 hour Cortisol Test, yet I have to wait six months to see my Endocrinologist. My GP has requested my appointment be expedited but we have heard nothing. I simply have to keep waiting.
8 Weeks ago, I did an Insulin Intolerance Test and was told over the phone that I have a second deficiency- Human Growth Hormone Deficiency. I was told this would require medication and that I would see the Endocrinologist but still I have heard nothing.
Last week I was told I that my Iron is not binding to the oxygen in the blood. I need to start Iron tablets to give me more Iron which will give me a greater chance of the Iron binding.
I’ve been to the hospital a number of times since my last Endocrinology appointment. In fact I visited the hospital 4 times and on the fourth time was admitted for 5 days- after the Doctors witnessed me collapse. Also I’ve collapsed twice since and both times been to A and E and had the medication that I’ve needed. Yet I still do not have an appointment with an Endo specialist. I do ring the hospital every day but it’s always a answer machine. I also emailed the Endocrine secretary.
I feel my calls for help are not being heard and if they are, there is a problem and that is the waiting times of the NHS. Too many sick people and not enough doctors. When I have a life threatening illness which people are dying from regularly, it really does make me feel frustrated.
The best medication for me, to stop the cortisol dropping in and out of my bloodstream and to ensure I get a continuous flow of cortisol would be a “Subcutaneous Hydrocortisone Infusion Pump”, which is in actual fact a Medtronic Diabetes pump which releases Cortisol into the body rather than Insulin. This could be life changing for me and solve the times when my body simply does not absorb my meds and the problems I have with dosing regimes tat never work for my body.
A pump costs about £4000 and then there is the yearly cost of medication (which works out about the same as my current steroid tablets) on top of this but surely this would be far more cheaper than having me repeatedly turn up to hospital and have thousands spent on me each time as I use x-ray machines, do blood tests, see doctors, use ECG machines and take up hospital space and Doctor’s time. I avoid ambulances when I can but I’m sure i’ve been in about 12 ambulances in the last 18 months. I use hospital resources when it could be avoided with better treatment.
An adrenal pump would potentially improve my quality of life like it has to the 15 or so people I personally know who use the pump. It would improve my child’s life getting more quality time with a Mummy and make my husband’s life easier too. I really want this pump but every time I’ve asked for it, I’ve been told NO. I don’t think it’s a matter of money- I feel it’s because the specialists who look after me (or will do- once I get through the waiting list) don’t have experience with the pump as it is a newer treatment option.
What bothers me is…when I see the specialist, I will express my concerns and they will probably say the same thing as usual, “we will discuss your case in a meeting and contact you”….and then never contact me and also, “try this dosing schedule and lose more weight as your steroid requirements will reduce once you weigh less”. This is of course good advice but losing weight on steroids is difficult. Also they say, your on the correct dose! How can this be if I am constantly unwell?
I do feel frustrated and I try to be a patient, patient. I try my best but sometimes it is not easy- especially when my body feels like it had been run over by a steam roller each night! Well I shall keep waiting and on Monday will try again to contact the Endo team and see if they can see me and help me to get well.
Until then I guess I will continue to write my feelings and experiences down from time to time and do my best to live with this hideous illness which does my head it at the best of times.
Angela Milnes xx
I am fundraising towards private medical care and the purchase of an Adrenal Pump. If you would like to help me out here is the link to my GOFUNDME account
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