My Life With Adrenal Insufficiency

Waiting to see the Endocrinologist

sylviasstyle

Today is another day and as I sit in hospital and contemplate what I will say in the small “two minute” gap I will get to have with the doctor today, I am filled with hope, anxiety and fear.

I will be seeing a new Endocrinologist on the ward today. I’ve been waiting almost a whole week just to see the Endocrinologist, which is really poor to be honest and not acceptable but I’m hoping today’s Endo is not one who assumes everything is okay but refuses to listen.

sylviastyle

 

Yes I’m in hospital mainly because my blood pressure keeps dropping low and the evidence is there, the nurses have recorded it but sometimes they assume I’m dehydrated or the doctors look for another reason like blaming D and Vomiting, when actually D and Vomiting is the result of low Cortisol. Anyone familiar with Adrenal Insufficiency knows that.

sylviasstyle

 

It it clear to me after all these hospital admissions over the past 3 years and trips to A and E that there is still a serious issue with my medication and as feeling ill so often coincides with my meds dropping out of the blood stream it is quite obvious what is wrong. Cortisol only lasts in the blood 5 hours and so I’m always going to be under and over replaced on tablets.

sylviasstyle

While in hospital, the doctors want my BP up and then me out of here. What needs to happen is I need ongoing investigations, like I have had for the past three years. I need a new Cortisol day curve and an out patient appointments, but last year, the Endo said he would make an appointment and never did and they have only wanted to see me about my Growth Hormone and not worry about my Adrenal Insufficiency at the moment.

Yet my AI is the very thing making me so ill and keeping me apart from my family. So my goal today is to see the Endocrinologist and express to him how I feel regarding my medication not working, without sounding like a know it all or someone who knows best. Yet I do know my body and I know what is wrong.

I also hope before the hospital patches me up and sends me home  they ensure a proper plan is in place for a day curve and to see the Endo as an out patient. That however could be many months. The NHS is stretched and so often appointments are cancelled and postponed on top of the all ready long lists.

Now onto the good news. I have almost saved £250 towards seeing a private Endocrinologist. This wont get me too far but, I have every intention of going to London to see a specialist I’ve heard of who is familiar with my condition and the treatment I would like.

I don’t understand why the NHS wont consider using the treatment I’ve asked for for 3 years. It would literally save thousands of pounds and give me a better quality of life. Also it would allow us to be more self reliant and independent and well. There is too much red tape and protocols and rules which make it impossible for some doctors and then there are other doctors who are clearly lacking knowledge or too scared to try something which clearly appears to be working.

Well all I can do is ask again like a broken record and keep saving. An appointment in London involves a few nights accommodation to break the journey up, organising childcare and babysitting and the cost of travel so it’s not something we can just go do tomorrow.

sylvia 8

Today I will ring this new Medical team to discuss a potential appointment and date. It’s the only thing I can do and I will wait here in hospital with the hope the Endo can help today as well. At least I know what help I need. It’s just a matter of getting it.

6 Comments

  1. So sorry to hear you are back in hospital. It must be so frustrating for you. I too spend lots of time in and out of hospital, both as an in-patient and out-patient due to my Crohn’s disease, osteporosis and ME. I am on medication for all three but I still don’t feel better so there has been a lot of stopping and changing. All we can do is try our best to keep calm and carry on. I really hope you hear some positive news soon – take care (hug)

  2. It must be so frustrating for you. Hang on in there and I hope you make some progress with your treatment. Something needs to be sorting because just patching you up and sending you on your way isn’t fixing the bigger problem. Hugs x

  3. Hope the new endocrinologist will listen and try to help you. Must be so hard for you stuck in hospital, feeling lousy and being away from your little girl. x

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