In for the 4 weeks of isolation and just found out that I have Addison disease. My gp gave the specialist all my tests bloods scans and how I have been feeling over the last 18 months. One of my tests was very low at 1.9 should be 6 - 8
The specialist has given me hydrocortisone but that’s it . No information. No guidance
I have had no letter from the docs and government as I’m in the high risk group due to meds and lupus and sjorgrens.
The most worrying thing is if I have a “crash” I have no injection yet.
I’m worried sick and getting more stressed and depressed
Marie
Written by
Marieg2009
To view profiles and participate in discussions please or .
No food is hard as the Asda web is having problems and keep cancelling my order . I’m going to have to go out tomorrow as I have no one else to help me
Please phone your local council and ask about food deliveries. You really don’t want to risk going out to the shops yourself now - and most areas have nhs volunteers who want to help. It’s just a question of finding them - look it up on coronavirus food help online
Have you registered on the government website for vulnerable people? They will deliver a food parcel and get you on the online delivery lists.
Have you seen or are you yet under an endocrinologist? I have a friend with long history of Addisons and Sjögren’s and she is guided by her endocrinologist. It’s important that you are properly diagnosed and monitored by the right specialist I believe because Addisons is not that rare and really no one should be left to try and manage it by themselves.
Please phone your GP or the specialist who diagnosed this and insist on getting proper help and information from them.
We keep being told that many hospitals are half empty and people are dying or becomjng very sick from their non Covid related illnesses rather than go into hospital - but it’s hardly surprising when we are just given medications and told to get on with it?
Really all these GPs and consultants need to do is get on the phone - especially when a patient has just been diagnosed.
Best of luck to you with getting the help you need and deserve
Not with any specialist for my Addison disease as it was diagnosed only 4 weeks ago as for the meds yes was told to take meds phone if your in difficulty. If I not in difficult what am I.
As Hidden says, once you are diagnosed, your GP should have no reservations about prescribing an emergency kit with 100mg IM hydrocortisone and injecting equipment in it. I would be on the phone to request this; you should also always have sufficient oral hydro to carry you through a week of double-dosing when appropriate x
Docs stopped issuing the kits because they say they need to see us when in crisis instead of self medicating and falling very ill. At least that’s in NI. X
Thanks for that rather worrying information....it seems the attitude that the doctor always knows best and the patient is an incompetent idiot is still alive and well This is a good example of where that attitude could be genuinely life threatening. The solution is to provide patients with proper education and skills, not deny them the understanding that will help them manage their own life.
When I awoke in crisis some time ago, the on-call doctor took over an hour to arrive. He said he was very glad I'd self-medicated immediately as otherwise he might have arrived to find me seriously ill.
Sorry I cant offer any other help - perhaps the ADSG would be able to advise? Or maybe you could point your GPs at the guidance on the ADSG site?
The ADSG group has useful information. With regards to COVID, their advice is to use "sick day rules" if you feel unwell, and increase your hydrocortisone dose. It also goes into detail about getting you emergency kit (hydrocortisone injections) and emergency letter. See here:
The 1.9 is your cortisol level and that is too too low. You need to be on standing hydrocortisone twice a day or once a day fludrocortisone. Hydrocortisone should be taken at 8 am and 1 pm to match with naturally occurring physiological peaks. Usually taken 10 mg and 5 mg. Has the endocrinologist written a prescription for either of these? If he didn’t give you instructions on dose or timing, call back and ask.
Was told that my cortisol is very low . At 1.9 . Should be between 6- 8 I believe. 9 o’clock 12 o’clock and last one at 5 are the times . Still getting dizzy low blood or sugar cramp in legs and a headache
Those are pretty good doses. Avg daily dose is 15-35 so you’re on the high end. Sounds like when people are talking about “sick days” they mean stress dosing to make sure your body gets more when you’re sick and your pressure doesn’t plummet. This can also be done with steroids so don’t fret if you don’t have injection. Definitely call endo if you’re feeling ill. It may also be wise to keep a BP cuff at home to make sure your BP is staying up.
That’s definitely concerning. Makes me wonder if there is something else going on besides Addisons that is causing your BP to drop even on a generous dose of hydrocortisone. Sometimes they add fludrocortisone to help retain salt and fluid or DHEA which improves quality of life.
I’m just wondering what your ACTH is because if this is low then your pituitary (part the brain that controls endocrine function) might be the problem. Pituitary controls menstruation, lactation, thyroid and adrenals. If these are dysfunctional, you’d need replacement for all functions.
Definitely tell your endocrinologist that the hydrocortisone dose isn’t cutting it. Since dose is already on high side, he/she should take this seriously and maybe keep digging. I wouldn’t place all my money on Addison if you still feel crappy.
Hello, sorry to read you have this. Have they said it’s primary Addisons or have you been on steroids for a while? Either way you need to have a hydrocortisone injection kit. It would also be a very good idea to buy a medical bracelet saying you have Addisons etc.
My body isn’t producing any cortisol itself so am also completely steroid dependent but my (usually excellent) GPs and rheumy refused to prescribe the injectable hydrocortisone, said it was only endocrinologists who can do this. I got a private endocrinologist to prescribe and now have an NHS endo who says he’s writing to GPs telling them they can -and must- prescribe these injections.
The only times I’ve had a big problem and an adrenal crisis was from constant vomiting so I couldn’t keep the oral steroids down. As whisperit says the ‘sick day rules’ of doubling your oral steroids if unwell is needed too, but be very careful if you get vomiting or diarrhoea as you won’t be absorbing the steroids. I was told to not leave it more than a few hours of being unable to keep down steroids to inject then get to hospital.
It’s all ok if managed properly but you need proper help and advice - and definitely an injection kit. Best bet would be to call your endocrinologist. They will insist on an injection kit and you should have an appointment to discuss how to manage it all. They did one with me on the phone last week so are available at the moment x
I have secondary addisons with a SST of 0. It is unclear whether your cortisol level is 1.9 or whether you had an SST done. Either way, you now have an answer which is a good start.
In terms of managing it just now, as long as you are taking your hydrocortisone at the correct times this should control your symptoms. It can take a while to feel better though as your adrenal glands get used to the regular doses.
The only issue comes if you have to follow "sick day rules" (i.e. when you are physically sick, have diarrhoea etc). The leaflet can be found here: addisonsdisease.org.uk/newl...
Sick days can be managed by doubling your dosage or taking additional doses. You can always consult your GP about this if you are unsure so that you have a backup supply. Emergency injections only come into play if you are repeatedly sick and cannot get to a hospital. You have to be trained to use them (they are not epi pens sadly so you have to draw the vial etc) so this is not possible at the moment. Having injections prescribed won't help you without the training because you could do serious damage to yourself. They also can't do referrals at the moment but I am sure they will do one for endocrinology once the lockdown is over.
That being said, injections are only for serious emergencies AND in situations where you can't get an ambulance or to an A&E department. This is often when you are on holiday etc. Even under the current climate, I had a potential adrenal incident two weeks ago and the ambulance arrived within an hour. I didn't have to use my injection and in the past two years have only had to use it once myself.
Look after yourself and keep in touch with your GP if you are worried. It can be a scary diagnosis but it is quite easy to manage 99% of the time. There are addisons support groups online if you want to speak to others with the condition.
i so had Addison disease was put on prednisone for 3 months weened off slowly.. you need to make sure you drink milk and take calcium Gradually your levels will go back to normal if you can stay off the prednisone Its a good and bad drug lots of side effects ,,google what others have done there is also an addison web site this is only one .addisonsdisease.org.uk/onli...
For Addison's? Not really. There are people who attempt to improve their adrenal function with diet but I dont think there's anything with good evidence of effectiveness. For adrenal crises, it is imperative to get hydrocortisone injections/infusions immediately as it's life- threatening emergency.
I hesitate to give any opinion on this; it sounds like you need an endocrinologist to advise. You might also want to look at the ADSG site; there are lots of info and resources there about adrenal function. addisonsdisease.org.uk/
Sorry for delay in response. I changed phones and everything went on the fritz. I think “steroids” is used broadly. Some steroids control inflammation, some control blood pressure. You want more of the later to control BP more than anti-inflammation in adrenal insufficiency. But since prednisone is so cheap, many doctors just used that and it’s not the best idea.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
This is a good example of where that attitude could be genuinely life threatening. The solution is to provide patients with proper education and skills, not deny them the understanding that will help them manage their own life.
why do I feel pig in the middle !!
Losing my Mind with this pain and not knowing what to do...feeling isolated in this world!
I think i'm in love with my steroids!!!
I have my 2nd appointment tomorrow with my GP with specialist interest in skin, first time since all this kurfuffle with officers at HB
