Visit to the Endocrinologist
So I attended my Endocrinology appointment and it didn’t exactly go according to plan. I did my best to try and get my points across and say what I wanted to say but I was thrown a huge curve ball which totally confused me and left me feeling totally upset…but I am now trying to process what on earth happened in that appointment and the best way for me is to write it down.
Here is a summary of what happened:
A New Diagnosis
First thing first. I have a new diagnosis of Human Growth Hormone Deficiency. The Insulin Intolerance test I undertook at the start of July revealed I have this issue. I then underwent an Arginine Test on the 1st of October to confirm this.
I meet the criteria to have daily Human Growth Hormone Injections. I have to wait for an appointment to be trained or shown how to do these injections. I don’t know when I will start my new medication but I’m hoping within the next 8 weeks. Fingers crossed. It all depends on how busy the Endocrine Nurse is.
I was told my exhaustion and poor quality of life is most likely due to not producing growth hormone as an adult. I am allowed to take the medication for 6 months. If there is no improvement after six months the medication will be stopped. I was told 80% of patients do improve and feel way more better.
I was told there is clearly something not working right in my pituitary as I have two hormones which are playing up from the same area in the brain.
How do I feel:
I’m frustrated it has taken many years to get a diagnosis. I’m upset that I’ve had to wait since July- when they knew what was wrong with me to be approved for medication and I’m frustrated I have to wait even longer before I can start the medication I need.
I’m happy there is something clearly wrong, which might explain my muscle problems and continuous exhaustion.
I’m excited to be starting daily injections soon and hopeful this will improve my quality of life.
I’m scared just incase it does not work.
I’m scared about the fact I will have to inject daily. This wont be a pleasant thing but if it helps me to feel better I am willing to do this.
My Secondary Adrenal Insufficiency Diagnosis
So, when I dd the Insulin Intolerance test, I stopped taking my hydrocortisone at lunch time the day before the test. According to the results my morning cortisol levels were 200, (they should have been 600) which means my adrenals produced 1/3 of the cortisol I needed on their own during the night!
Um….. I thought my adrenal glands had packed in. I’ve twice been told my adrenal glands do not work at all yet these results according to the consultant indicate I am making some cortisol, even if it is not quite what my body needs.
As a result he wants me to have another Cortisol Day Curve Test to see if the 20mg I am now on is too much for me.
I was told there is a possibility I could eventually come off Hydrocortisone and may only need it in the future when I become unwell rather than daily.
I asked if I could have a 24 hour test as I get worst between 6-8pm at night and the day curve ends at 5pm. I was told no. I was told the lunch time test will show how fast the medication/cortisol leaves my system.
I asked if I can do circadian dosing or go on the pump. I was told, No! Because I’m producing some of my own cortisol and only need a small amount of hydrocortisone, (according to the consultant) It would not benefit me to dose according to the circadian rhythm.
How do I feel:
If I’m making some cortisol on my own and my adrenal glands are not packed in completely or they have restarted then that is wonderful!
However I am still not producing 2/3 of what I need so I still need to be on hydrocortisone and I still would like a 24 hour day curve.
I don’t see how a 9-5 day curve will benefit me if I am laying down or sitting in a chair at the day treatment centre. It will not show how my medication clears when I am active, parenting, doing stressful things like blogging, writing, housework, walking, exercise, physio etc.
Should I try at my day curve to do lots of activity to show them what happens to my body/cortisol levels during exercise. Should I walk up and down the corridors until I feel unwell so they see what happens to my cortisol when I have done something other than sit for hours?
Will this day curve actually mean I need to reduce my medication further? Could it be that I have been on far too much medication for the past two years. Am I on too much medication and this is causing my headaches or am I (as I believe clearing my medication too quickly resulting in dizziness, weakness and headaches?). I do not know?
If I need Hydrocortisone which I clearly do- no matter the amount, then I would still benefit from having this medication given to me via the pump/ circadian rhythm dosing to mimic how the body would naturally produce cortisol.
Just because the hospital does not know how to work with the pump, does not mean I should not use it!
I was told by the consultant that he does not believe that my Adrenal Episodes when I go to hospital are actually “Adrenal crisis”. He said he does not believe I am going hypo with my blood sugar and that my trips to hospital must be for some other reason!
This DOES NOT make sense to me nor to my husband who see’s me collapse. When the Doctor in A and E saw it happen he admitted me into hospital straight away! The endo who saw me in hospital said it was an adrenal crisis.
If I am not having an Adrenal Crisis or the start of a crisis,
Why do I collapse? Why do I get dizzy? Why do my muscles get weak?
Why does my Blood Pressure drop down to 90/45?
Why do I have sudden Diaorreah?
Why do I get stabbing pains?
Why do I get the same symptoms that all my friends with Addisons/adrenal Insufficiency get?
Why am I told my blood sugar is low and get asked to eat chocolate and drink milk?
Why does the emergency hydrocortisone make me feel better?
The consultant feels It is not a crisis because my potassium/salt levels etc don’t drop dangerously.
How I feel
I do start to have an Adrenal Crisis when these episodes happen. I know it. My husband knows it. However after a few hours I pick up a little because (I make some cortisol myself) which is just enough to keep me from getting worse but not enough to deal with my low adrenal symptoms.
I’ll go into hospital will a BP of 90/45 and it will pick up to 110/60 and then an hour later drop back down to 90/45 again and then pick up. This to me tells me I am getting unwell but then the small amount of cortisol I make helps me but then runs out and I go back to square one.
When I finally get 100mg hydrocortisone, I get much better and can walk and function again. The Hospital want to keep me in when I am 90/45 but when i improve they want to send me home and then when it drops again they want to keep me in.
I am confused. I know this is the start of an Adrenal Crisis, even if it does not go into a full blown complete one, I still need support and help. I cant be expected to lay in bed at home when this happens and just get through it.
I feel the Consultant is very wrong about this and he has never actually seen me during a Adrenal Crisis. The Consultants that do see me in hospital actually tell me to increase my hydrocortisone dose because they see it really is an Adrenal Crisis.
So I wait for my injection training and to start my human growth hormone medication and hope this helps me.
I wait for a day curve which will probably be in many months as the waiting list is massive. When I do the day curve do I try to mimic my everyday life to demonstrate real everyday life?
Do I now go look for a second opinion? I’d have to wait until January if I want to transfer NHS hospitals as doing so now would only delay the start of my new meds and the day curve.
Do I save up to see a private Endocrinologist for a second opinion about my cortisol levels?
Is the Consultant right and I’m just a confused weirdo with an imaginary illness- which would make my husband confused too as he looks after me and deals with my daily symptoms.
Is the Consultant looking too much at the “Text Book” rather than looking at me as an individual!
The Consultant said when unwell I will still need more hydrocortisone- yet I still don’t have instructions as to how much that is or what to do in certain situations. I just have to go by what I think.
So I made some progress but also feel confused about some things. Doctors are only humans and can only guess what is happening based on the blood results they see…but is this consultant wrong and will my life be at risk of another Adrenal Crisis and if they don’t believe it is a crisis…could I be at greater risk of dying if they are wrong? and if they are right..what the hell is wrong with me?
Angela Milnes x