Adrenal inufficiency

Adrenal inufficiency

Postby member_41265 » Thu Jan 08, 2015 2:18 pm

Hi, I have just joined the pituitary org and have adrenal insufficiency (diagnosed Feb 14) which I cannot adequately control and worse still I am receiving inadequate treatment for it on admission to hospital. I wondered if anyone has any advice. I have hypothyroidism, hypogonadism, secondary adrenal insufficiency, pituitary microadenoma, pernicious anaemia and recurrent resistant UTIs/pyelonephritis and the adrenal side is making my own and my partners life hell.

Since 18th Dec I have had 3 adrenal crises, each treated initially by the emergency cortisone injections done by my partner or mum. As I have bad peripheral neuropathy in my hands there is little sensation or dexterity left in my fingers so I cannot even load the syringe, let alone break the top off the vial. One other injection was done by my GP when no-one else could do it but just to get that I had to sit for an hour in a waiting room full of other patients who presumed from my behaviour that I was a drunk.

After each emergency injection I have then gone downhill fast about 4 hours later so I have had to go to A & E. Twice an ambulance took me but the hospital had a huge queue of trolleys and I was not a priority so I had no choice but to put one after another hydrocortisone tablet under my tongue to fend off the next crisis. The symptoms are always the same but at the latter end I just pass out. Each time whilst in hospital I ask for fluids and additional IV cortisone as I feel so ill but get neither. On 1st Jan's visit to A & E my veins were shut down so I was told after 5 attempts I couldn't have fluids. But surely an IM cortisone injection would have allowed access to my veins? Most of the doctors I have met there have never heard of adrenal insufficiency, let alone crisis symptoms. And only one of the three wards I have been on keep the emergency injections on the ward. Even A&E do not have the hydrocortisone vial I would need.

It is bad enough to have to cope with unstable adrenal function but knowing I wont get the treatment I need to stabilise things in hospital is just soul destroying. What precipitates my crashes are usually bad UTIs or sinus infections. The last one, however, on 3rd Jan was due to acute labyrinthitis (diagnosed 2 weeks late and only then because my adrenals conked) which I think is an inner ear infection. I feel like I am totally out of my depth, even though I have extensively read about and known for at least 4 years that I had undiagnosed adrenal insufficiency.

I started out taking Dexamethasone 0.75mg daily and whilst on that had no crashes despite 3 infections but it made a terrible mess of my stomach. so now I am on hydrocortisone 15mg + 7.5mg + 7.5mg (currently doubled to 60mg in total for the labirynthitis) but still have symptoms. My blood pressure always drops on standing but usually runs high until a crash. I haven't been able to talk to my Endo and she is in a different hospital to the one where I attend A & E. If anyone has any advice I'd be really grateful as I do not know anyone with adrenal insufficiency and I cant join the Addisons Org site as my condition is secondary. I am told I am the only one at our GP practice who has it too, but which I doubt. My head is literally in the shed with it all. Anyway, thanks for taking the time to read this and best wishes to you all,

Tigerspace :shock: :shock: .
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Re: Adrenal inufficiency

Postby Carl » Thu Jan 08, 2015 5:19 pm

Wow, that is a lot to deal with.

In the first instance (if you haven't already) I would call the Pituitary.org Endocrine Nurse helpline on 0845 450 0377.

See http://pituitary.org.uk/support-for-you ... -helpline/

Hope you get things sorted soon.

Cheers, Carl
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Re: Adrenal inufficiency

Postby Carl » Fri Jan 09, 2015 9:24 am

Hi again Tigerspace

I was in a bit of a rush last night and didn't have time to say much. I had a macro-adenoma removed in May 2013 and have Hypogonadism and take Hydrocortisone (10-5-5mg) and luckily for me have only ever had one Addisons crisis (because of a sinus infection after surgery)....and to be honest one crisis was one too many. I probably will have another one some day, but I can empathise that they really aren't something I'd ever want to repeat, not that I can remember that much about it it tbh....

I assume you are on Testosterone of some sort for the Hypogonadism? (I have the Nebido injection, but have tried the gel's too)

I also carry a blue steroid card in my wallet that has my dosage as well as my Endo contact details, and I have an ID bracelet that I wear that says "needs Hydrocortisone" on it as well as a barcode that links to a website with my full medical details (from https://www.onelifeid.com/ , but I'm sure other companies do them). I am lucky in that if I have any concerns I can email my Endo at any time, wouldn't you be able to do that with yours?

I am in contact with someone with actual Addisons Disease via Twitter and she recommended I join addisons.org.uk (and I have secondary adrenal insufficiency like you) and I don't think they'd stop me joining, although I note on the site it does say "for people with Addisons" - I haven't joined yet. But essentially whether you have Addisons Disease, or whether you have what we have, the resulting Addisons Crisis is the same. Have you tried emailing them at feedback@addisons.org.uk and see what they say?

I know someone else who has agreed a Care Plan with their GP (different conditions) which sets out the exact path she should take at various points in her conditions. Read more at http://www.nhs.uk/Planners/Yourhealth/P ... eplan.aspx . Might not be for you....

I don't know what else to say right now except stay strong. One thing to be absolutely clear about, the expert on your condition is you, and hard as it can be when you are having a crisis, you need to 'shout' as hard as you possibly can to get the care you know you need. When you get to talk to your Endo, perhaps she can put some kind of plan in place with the A&E you attend.

Anyway, I've rambled on enough, stay strong and hopefully this is just a bad patch. I'd recommend you get to see your Endo as soon as practically possible to talk all this through though.

Good luck, Carl
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Re: Adrenal inufficiency

Postby Pat » Fri Jan 09, 2015 11:36 am

Hi Tigerspace
Be a very good idea to speak to Alison - she's next on Monday 12 January 10am -1pm and 6pm -9pm. 0845 450 0377

If you email me pat@pituitary.org.uk I have produced information direction sheets for A&E and general ward staff who are unaware of adrenal insufficiency/hydrocortisone needs and I will email you them back. This sheet (plus one for DI care) will direct them to treat you urgently and appropriately. We also have a bedside proforma, which can be completed by the individual patient's endo and used with these other information sheets. These will be fully available for all, via our website in February.

Our Hydrocortisone advice leaflet and emergency steroid card can be ordered free of charge from the Free Resources section of our website shop.
All of our AI information relates to secondary adrenal insufficiency, whereas Addison's (although similar guidelines as ours), is for primary AI patients.

In an adrenal crisis, stated to ambulance control on phone, ideally a paramedic would come who could inject you quickly, to save time on arrival at A&E. See your GP to ask if your details could be flagged protocol electronically at local ambulance service, so they are always aware.

Pat
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Re: Adrenal inufficiency

Postby member_41265 » Fri Jan 09, 2015 7:30 pm

Hi Carl.

Thank you very much for all the info you have given me. This afternoon at 4pm I had another crash and this time my partner used solu-sortef to inject as there is now a national shortage of hydrocortisone for the injections we need. Can you believe it? My pharmacist cannot get it anywhere. Anyway I was checked out by my GP 2 hours ago and I am ok, but of course I still have the ear infection so I will have to be careful. My GP (not my usual one) has agreed to fax my Endo to say I must be seen asap. But sadly she hardly knows anything about adrenal insufficiency. I will see my regular GP Tuesday to discuss a personal letter I sent her on Monday saying I am at my wits end and could she please contact my endo and urologist to sort out a treatment plan.

No I don't take testosterone (it has never been checked?), just hydrocort, HRT and Armour Thyroid/Thyroxine (for primary hypothyroidism diagnosed in 1995). I do have a blue steroid card, bracelet & the leaflets available from this website. I also have a medical ID card made by theidbandco.com which shows all my conditions and meds. The last ambulance crew that collected me (1/1/15) stated they can inject a person with Addisons straight away on request but in secondary adrenal insufficiency they can only inject when blood pressure falls below a certain level. Every time I start with this my legs weaken and have terrible pain in them, my BP rockets, as does my temperature, then both fall like a stone. There are earlier warning signs like low body temp, slurring my words and irritabililty/confusion during the preceding few hours but it is other people who notice most of those, not me. Theres low blood sugar (I'm not diabetic but use a glucometer to check on that) and dizziness as well but as I have labyrynthitis right now I am dizzy all day anyway.

Currently I am trying to get my urology consultant and endo to discuss my case and put some kind of set treatment protocol in place as I get so many UTIs and its those that usually cause my crashes. But its easier said than done. That's a great idea about the GP care plan, that sounds like just what I need. I will have a look at the link when I have typed this. Yes I would like to join the Addisons org too as they have some useful emergency leaflets and cards but I don't think I'm eligible. When I am on more of an even keel I will enquire about it and would be interested to know how you fare with them too.

On Monday I will contact the endocrine nurse, providing I am not in the hospital yet again. I don't have an endocrine nurse allocated to me so it will be a huge help to talk to her. Its is only after the hydrocort injection that I realised just how bad I had actually been feeling during the preceeding few hours. Did you feel like that after your crisis was treated? Thanks again for your advice, I'll post again with my progress and I'll keep on trying until I get what I need from the NHS. Just had another thought - my MP helped me to get monthly B12 injections for PA 2 years ago and I'm sure he would be willing to assist again here if necessary. Kind regards,

Debra.
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Re: Adrenal inufficiency

Postby member_41265 » Fri Jan 09, 2015 7:49 pm

Hi Pat,

Thank you very much for your reply, I intend to talk to Alison as soon as I can as I don't have an endocrine nurse at the clinic I attend. I will ask my GP next week when I see her if she can alert the local ambulance service of my condition so that help can be sent as soon as possible. The last crew I called out were one and a half hours late (delayed by drunks calling them out) but fortunately my Mum was able to do the injection for me within 5 minutes of me phoning her - she only lives 3 doors away thank goodness and used to do her own Vitamin B12 injections to treat her pernicious anaemia. It was very distressing for her though and her health isn't good either.

I will email you as the information direction sheets and bedside pro-forma would give me great peace of mind for what is obviously a quite rare but dangerous disorder as adrenal insufficiency. Its good to know that The Pituitary Foundation and its members and staff are here to help me as I have felt totally lost and alone since the crises began in August last year. When I was first diagnosed in March 14 I decided I would rule this condition with a rod of iron but how wrong I was about that. Suddenly I have become extremely reliant on my partner, two particular friends and my Mum, but they have been great about it all and I cant thank them enough. Thank you again for your help and I'll email you shortly. Best wishes,

Debra :) .
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Re: Adrenal inufficiency

Postby Pat » Sat Jan 10, 2015 9:22 am

Hi Debra

just emailed you over the information sheets

take care
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Re: Adrenal inufficiency

Postby member_41265 » Sat Jan 10, 2015 4:30 pm

Hi Pat,

Thanks for the email and the documents. My friend has managed to print several copies of each for me. I've rested up today and so far I've been ok. Kind regards,

Debra.
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Re: Adrenal inufficiency

Postby Carl » Mon Jan 12, 2015 9:08 am

Hi Debra

member_41265 wrote:No I don't take testosterone
Ah my error there, I had assumed from the Hypogonadism you were a man....oops :D Not sure about the Testosterone!

member_41265 wrote:there is now a national shortage of hydrocortisone for the injections we need
Yes, I can't get the usual injections either, and have a supply of Solu-Cortef, it does the same job, so hopefully not an issue. I carry an injection around with me whereever I go, just in case

member_41265 wrote:Did you feel like that after your crisis was treated?
As I said, I am lucky enough to have only had one crisis. My wife tells me a lot more about the events leading up to that time than I can remember. I can remember being ill (with a sinus infection and tonsillitis) and I can remember my wife getting really worried and calling the out of hours doctors - as it was a Saturday. Then I remember being wheeled into hospital (I couldn't walk) and then I remember waking up in a hospital bed full of IV lines and feeling "weird". It took two days before I came too and fully realised what had happened, I was in hospital 5 days in all. I came out wiped out by the infection, but feeling a whole lot better. Such a weird experience.

Hope you start to get some plans in place soon and start to get on top of the condition.....ruling it with an iron rod, you have to have that mindset!

Cheers, Carl
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Re: Adrenal inufficiency

Postby member_41265 » Tue Jan 13, 2015 7:20 pm

Hi Carl, oops, my mistake as I thought low FSH and LH was called hypogonadism! :shock: My levels of both are so low I'm actually surprised I haven't turned into a man! :D I haven't been on here for a while as I've got a terrible chest infection. My GP swapped my antibiotic today though so I'm hoping I won't end up in The hospital on IV. I caught the chest infection whilst in there being treated for a uti. I had asked on admission if I could be put in a side room as my immunity is so poor but even though a room was vacant I wasn't allowed to use it.

Yesterday I spoke to Alison the endo nurse as you suggested. She was a great help and she is so knowledgeable especially about hydrocortisone treatment. Maybe now with Alison's help I have hope of a much better quality of life with a lot fewer crashes. I didn't realise that just some fine tuning with times and size of doses can make such a big difference. Lunchtime today wasn't too good, my BP dropped to 91/61 and the horrendous leg pains and dizziness began but I laid flat on the floor and took a little extra hydrocortisone and it gradually passed. Then after A couple of hours sleep I was fine.

I haven't been able to contact my endocrinologist yet so my GP has faxed her requesting an appointment. To be honest I wouldn't even be up to the journey there right now but I need to get the Pituitary Foundation treatment advice documents (which Pat kindly emailed to me) completed. Then if I do have another crisis I will get the IV fluids and additional hydrocortisone I desperately need, rather than just being discharged still feeling very unwell and crashing again.

I am learning so much from this web site and intend to keep reading until it all gradually sinks in. I'm surprised just how much a pituitary disorder can affect short term memory and cognitive thinking. But maybe when things stabilise I'll notice an improvement in that respect. Thanks for your help and advice, regards,

Debra.
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