This afternoon is a major milestone in my Adrenal Health. I am seeing my consultant at the hospital after waiting almost 5 months.
I have a lot of say and ask and although I don’t want to be too overbearing or come across as a know it all or too pushy, I cant sit back and be ignored as I was in my last two visits. I’ve been seriously unwell for two years and it affects all aspects of my life including my hubby and child.
I was given some good advise to write down the goals I wish to achieve at the appointment. I will also be taking some research about circadian rhythm dosing to my appointment. Research written by Professor Hindmarsh. Here are my goals.
Goal One: To make it clear that my medication is not working for me- I am clearing it at different rates depending on what I do. After 26 months I can tell when I am low in Cortisol.
As a result I am always unwell. My family suffer, I suffer. My quality of life is poor and I have more adrenal crisis and regular blood sugar hypos- which is unfair. I can not live a semi normal life. I am stuck in bed, unable to go out often. Need to use a wheelchair and unable to exercise.
- The Day curve Test was taken 12 months ago- during a day resting.
- When I get up and make food/get dress/walk/do stressful parenting/cook/clean etc I can feel when that the cortisol has run out – I get symptoms – dizzy, weak muscles, headaches, feel exhausted and unwell. (stabbing pain in legs)
- If I leave home and go somewhere, I feel I need my medication earlier. I become unwell at 3.30/4pm rather than 5pm
- If I am late for a dose, I begin to get symptoms- dizzy, weak, muscles, headaches, (stabbing pain in legs) the same symptoms I get if I do something and my meds clear faster.
- Symptoms/ weak muscles inability to stand improve when I take my medication but headache and tiredness continues as a knock on effect.
- I can have problems in the evening – getting unwell if I do something more stressful. (family night/homework/dinner/parenting)
- I would like to have a dosing schedule which is circadian rhythm dosing based in the short term and to have a 24 Hour Day Curve Test.
Goal Two: I want to be seriously considered to use a MiniMed Diabetic Pump and have Subcutaneous Hydrocortisone Infusion Therapy.
- I have researched and this is the best method for improving quality of life and mimicing the Cortisol Circadian Rhythm.
- I have asked for this on 3 occasions over the past 18 months and been told it would be discussed but have never had any response about this request.
- There is a method/formula that can be used by contacting Professor Hindmarsh at Great Ormond Street.
- I want to know will the Endocrinology team will support me to try the Adrenal Pump?
- Can I apply to the NHS for funding. Based on the people I have spoken to who use this pump it has kept them out of hospital (prevented adrenal crisis) since they started on it! I have had about 16 Adrenal Episodes where in the past two years and the pump would be financially cheaper for the NHS than repeat emergency visits and Hospital Admissions
- If the NHS will not fund a pump… then will the Endo team prescribe and supervise me to have the Mimimed Pump for Cortisol treatment if I pay for the Pump myself?
- If unwilling, will the Endo team refer me to another hospital such as Manchester where a number of patients are using the Pump.
- I am currently rely upon carers to remind me to take my medicine (due to serious memory issues- as my cortisol wears off) and the pump would reduce the need to rely on other people.
- cortisol in my body to get up and prepare/make my meals. I currently cant do this.
- The Adrenal pump has changed the life of many of my friends with this condition. They had similar symptoms to me and now are able to do so much more.
Goal 3: I do not feel I have sufficient support as an Individual with Adrenal Insufficiency
- When I get unwell, Doctor says it is a Hospital Issue, yet not bad enough for A&E.
- My BP can drop to 90/50 and I go to Hospital and then get sent home.
- What do I do when this happens? What do i do medication wise?
- What do i do when I have a hypo?
- Does my Husband need to contact anyone when Im lying in bed adrenally low and falling asleep due to low blood sugar? Or should my husband deal with this at home and how does he do this?
- Do I take more cortisol medication when my Blood Sugar drops?
- Do I take more medication when I have a period?
- Do I take Cortisol in the night when I have a heavy painful period? Every time i had a period I have ended up in hospital with AI issues.
- Why does the Endo Nurse tell me my stabbing pain in the legs is not a symptom of Low Cortisol when this is what happens to my body? I have a sequence of symptoms which take place before an adrenal crisis and I know my own symptoms.
- Why when I have been so unwell for many months was I not able to see a Consultant as an urgent appointment?
- If I am sent away today – can I have a 8 week follow up (not 6 months). It is unfair to make me wait 6 months to see if a new dosing schedule is not working. This means I am seriously unwell for many more months than necessary.
- I’m going to have physio due to how weak my body has become since becoming Adrenal Insufficient. Do I need to take extra meds when I do this exercise?
Goal Four: I was told in July I have HGH Deficiency
- Will I be getting treatment for this condition?
- How often will this condition be monitored?
Goal Five: Better Communication with my GP
- Please can I get copies of the letter sent to my GP
- Please can my GP be told to provide more steroids than the single dose of 20mg per day so I have medication available to stress dose when I am supposed to.
I simply wish to be heard and have my questions answered. I’d like to receive the correct treatment for my conditions and not be treated as an Adrenal Insufficient but as an Individual with symptoms.
I hope I am heard. I hope to get answers and have more information. I hope to have a change in my medication as the dosing schedule I am on is clearly not working for me. I hope to be seen more regular and be seriously considered for a 24 hour Day Curve and the Adrenal Pump.
Angela Milnes xx