My Life With Adrenal Insufficiency

When the Endocrinologist will not Listen Adrenal Insufficiency

cortisol levels change

When the Endocrinologist will not Listen- Adrenal Insufficiency

Suffering from Adrenal Insufficiency is never fun. One of the biggest difficulties I have and struggle with is the fact my Endocrinology team appear to have a “text book” list of symptoms for my illness and because my personal symptoms don’t match up with the ‘general list” of AI symptoms I am often told “your cortisol much be fine – you don’t need extra medication”.

I know my symptoms. I know what life felt like before and after I became unwell and the same thing happens every time before I go into a crisis. At different times most days I have stabbing pains and nausea, I go weak and dizzy along with many other things, yet I’m consistently told my pain and symptoms must not be due to low cortisol!

How can this be? I get unwell around the time my next dose of medication is due. I get a headache and pain in my legs and body. I get irritable and stressed, my memory is shot. i cannot walk, yet I can walk when I have cortisol in my body.

Once my meds have been taken and absorbed things clear up only for the symptoms to return a few hours later. I get way worse in the night when I’m not supposed to have any cortisol medication. “Hello, when healthy people have stresses at night, the body makes more cortisol”. Just because I need to replace my cortisol, it does not mean I wont ever have stress in the evening or night.

Take for example a period. A period does not stop at night time! It happens both day and night. In a woman with functioning adrenal glands, the body would make whatever cortisol is needed. I’m told I don’t need to take extra cortisol for a period, yet every single time I’ve had a period since diagnosis (26 months ago) I have had an adrenal crisis.

The emergency team tell me clearly you need to double on a period. The Endo team say, no you don’t.

When I am in crisis at the hospital and my muscles are in pain along with the low blood pressure the Emergency Team say, yes your part way through a crisis and they put a stop to it with a high dose or hydrocortisone, usually 100mg and often fluids.

Yet, the team who are supposed to support me on a daily basis (the endocrinology team) cant accept that my levels are always up and down and try to blame me needing a wheelchair on ME chronic fatigue Syndrome.

They cannot see that when I double up, I can walk and function normally. When I have a crisis and am treated at hospital, I can walk. The extra cortisol give me what I need. Yet when I return home and take tablets, I’m back to using a wheelchair and feeling sick all the time.

My GP can only prescribe the dose of medication the Endocrinologist says I need. The Endocrinology nurse tells me I should be on 20mg. If I reduce to 20mg I collapse often and lose weight. The hospital team when I have a crisis put me up to 30mg. (This is far more better for me). However I still struggle. My cortisol still runs out for the slightest stress.

Even though this happens for me and I’m told “theoretically” it should not. It does and my GP agrees. My body is cortisol sensitive and certain things make me use more cortisol. For example,

If my child gets cheeky or has an arguments and cries- this makes me ill. (No it doesn’t stress me out because i’m an anxious person…I should know i’ve had anxiety in the past). For me, I feel my body becoming weak and my early “low cortisol signs appear” – the same signs I get before I go into a crisis.

Also, If I here a sudden bang which startles me or a loud noise, my body goes weak. Am I the only one? No. I was just yesterday talking to another AI patient who’s body goes unwell whenever they have a planned fire drill at her work. It’s not because she is anxious but the stress to the body causes her to go low in cortisol.

At the end of the day, I had a 9-5 cortisol day curve last year. My stress levels were tested in a hospital room, I was laying down and resting with no worries. I may have had enough cortisol to function in a hospital room, but that environment is nothing like the environment I live in.

My GP says it is not possible to test my cortisol the instant my child is screaming with a tantrum, when I have a stressful situation to deal with or am attempting to walk, put things away and do every day things.

If my cortisol levels were tested, whilst I was at home doing what I usually do- the hospital would see I do not get enough coverage. The day curve is not an accurate reflection of the medication I need.

When on 20mg I cannot stand and have no appetite. I lost 30lbs and i’m sure the low cortisol influenced this. I should know…it’s not easy to lose weight. Now i’m on 30mg (which i’m told is too much) I am staying the same weight. If it were too much surely I’d be gaining. It’s not. my body is using up my cortisol extra fast and when it does I get really unwell.

I may be able to absorb the medication but I know depending on what I do each day and the events I face, I will run out of cortisol. Different circumstances cause me to clear my meds faster than others.

If I double up or take extra meds, (which i never know how much to take) theEndocrinology team will tell me – you don’t need to! Yet, if I don’t take extra I end up in hospital being told to double up.

I cannot win. I need a 24 hour day curve and I need to have some real life stressors during the test. I cant just lie on a bed and expect it to be accurate when this is not a reflection of my daily life.

I’m going to see the Endocrinology team at the end of October and my GP said, if they don’t listen to what I am saying he will refer me to a different hospital. I say finally! Thank goodness.

And….oh my gosh…something I never thought i’d hear was my GP saying to me yesterday was,  “I have a few patients with you condition and they all have the same problem…..maybe you need an adrenal pump! That might really help you to get well”.

In my head I was like “OH MY GOODNESS ME! Did he seriously just say that? The one thing I’ve been asking for to help me get well (and the one thing everyone has said NO to) and my new GP is now thinking this may be the answer!

Sadly my GP is not an endocrinologist and I have to go see theEndocrinology Team but when I do at the end of next month, I’ll be letting them know how I feel and requesting yet again a 24hr day curve and the Adrenal Pump. I wont give up.

I need more tests doing but tests take time and have to be approved and to be approved I have to see an Endocrinologist  and that takes many months, and to convince the Endocrinology to actually do the tests I need..that could take years. At least if they don’t listen to me next time I can try yet another hospital.

In the mean time I’m instructed to stay on the dose I was given and not change it. I’m told not to take extra because “the nurse on the other end of the phone” does not believe I need it. The GP cant prescribe more than what theEndocrinologist recommends so I am stuck waiting.

I think I’m going to write a letter to the endocrinology team about my concerns. Surely then they will have to address them?

Angela Milnes xx

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  1. Oh my goodness what an absolute nightmare it sounds as though you’re having? It’s not something I know anything about but I can only imagine how desperate it must make you feel at times!? One thing I do have experience with though is writing to the NHS, both with positive and negative feedback. I have to say that in both cases they responded quickly and investigated thoroughly so I think it could definitely be worth a try? Good luck and I hope they come back with some solutions for you xx

    1. Thanks. It is difficult and I just find it easier to write down how I feel. I will be waiting for my next appointemnt and based on how that goes I may need to make a big complaint! Thanks for stopping by! Angela x

  2. Angela, I got so mad reading this…..these doctors should listen to you when you tell them how you feel! I agree that 20mgs is not enough for most people….I wouldn’t survive on that. I have changed up my doing times, taking smaller amounts every 4 hours through the day and night. It’s been about 2 weeks now, and I am feeling so much better. My endo told me to try and let her know how it works. Good luck with your next appointment.

    1. Thanks Mo. I feel mad too as I’ve been going around in circles and I should not be so unwell that i need ot use a wheelchair just because im not getting the correct medicine. It is upsetting and they need to do something. I am awaiting my october appoitnment and fingers crossed things will improve from there! Angela x

  3. Endos seem to be one of the worse depts, sorely lacking in listening to patients, they go on figures and stats all the time in the NHS (unless you need a diabetes specialist then they are all ears). If it is your adrenals, other glands, thyroid etc you get the short end of the stick.

    1. I totally agree. My hubby had thyroid issues and is so unwell too. Because they understand diabetes a lot better and the symptoms, they help people with this more.

  4. So sorry to hear, that you too have to suffer this illogical, nonsensicle failure of some departments in the NhS to actually ‘see the patient’ in front of them, and listen.

    Like you, I too am struggling on hydrocortisone (secondary addisonian), and only a few weeks ago had a major crisis and was rushed into hospital to be treated. Yet, even as I sit in hospital, in bed, and explain how I react to hydrocortisone, to an endocrinologist; he then tells me that I have to increase my dose under certain circumstances; the exact same circumstances I had two minutes earlier told him were side effects I only get when I do take the hydrocortisone.
    Still waiting to hear back from my own cortisol day curve; again 9 AM to 4 PM, so not expecting it will show anything of any interest; i slept during most of the day curve anyhow, so not exactly a good setting to determine ones natural fluctuations in levels over 24 hours.
    Also trying to regulate my hydrocortisone here, in relation to the levothyroxin I have to take, the 8-weekly testosterone injections, and soon, I’ll probably be starting growth hormone replacement too.
    Just try and avoid getting any other illness!; i can’t get oncology and endocrinology to talk to each other at all; and each blames the other for any side effects I now get (have had oedima over a year and they just keep sending me from one department back to the other, and back again). (I have to deal with oncology as I also had lymphoma last year).
    Do you also get treated patronisingly?; I do, its like they talk down to me as if I’m some kind of idiot; i do occasionally have to point out to my Drs that I’ve a BSc in biomedical sciences and a masters degree in immunology, although they probably ignore that too like they do everything else. – Maybe changing Drs and hospitals is worth a consideration.
    Best of luck with your Drs and getting them to pay attention!

    1. It’s tough and sometimes I am talked to like im dumb..and yes like you I am educated and have two degrees. Its not like i don’t understand but it can be hard.

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