Until the 3rd episode in early July I didn't actually realise what was happening. I have always been wiped out with a 'flu / bug' for a couple days about once a year but after 3 times I did some research. I found this link to these symptoms.
I tried to move my appointment with the endocrinologist forward from November but the best I could do was mid September. A bit too late, I was laid low again 1st of September. I've always tested OK in the past. Not sure what's gone wrong this year?
When illness strikes, it's a chronic shortage of cortisol, I double my hydrocortisone dose, 20 to 40 on a morning, 10 to 20 on an afternoon. However, as it usually presents during the night it's a bit late to fight off the worst. I ended up in hospital overnight this time, my worst incident and my good lady was worried.
Obviously my Addison's disease is linked to AMN. So I was wondering if anyone else is suffering in silence?
Thanks Keith
Written by
KeithS
To view profiles and participate in discussions please or .
Sorry to hear you've been battling our illness more intensely than ever recently!! I also have had more crises within the last year than since before my Addison's was diagnosed. It was pretty consistent that every couple of years I would have a crisis and end up in the hospital needing solu-cortef, mostly because I couldn't keep any meds down, but also because it needed to get into the system more directly. Usually when anything seems to be coming on I will double my hydrocortisone and fight it off before it gets bad, but sometimes the bugs work to fast and I don't have time. The last one was brought on by what I think was food poisoning. Do you have an idea of what was the initial cause of the crises each time?
There doesn't seem to be a common cause. The previous 3 episodes were more or less same bar one came on about 5PM so I caught it quickly and was only off work one day.
On the latest occasion I again woke up ill but I only had stomach pain. Within an hour I had the normal headaches, nausea and fever. I actually vomited which has never happened before.
I have never used my emergency injection before and as I'd taken my double medication at least 2 hours before being sick I didn't use it this time either.
At hospital they did give my hydrocortisone intravenously. My water tested fine but my blood did show some infection but even after an ultra sound they couldn't pin it down.
I can't even imagine having four adrenal crises in one year! I've been highly fortunate in 38 years of having Addison's with having only one ER experience. My endo wrote on my prednisone Rx "3 x 3", whereby you triple your dosage for three days with fever and other illnesses. It is also recommended that you have a Rx for Solu-Cortef, an emergency corticosteroid injection when having an Addisonian crisis which can be life-saving.
I also subscribe to an Addisonian community board on inspire.com and have learned so much from other Addisonian patients. This has helped me to open up my dialogue with my endo for treatment which he has highly supported.
Please let us know if there was any particular stressor aside from illness, perhaps stress, for example, that can lower your immune system.
Thanks for sharing your experiences, Keith, and I am so sorry that you haven't been feeling well.
I also have adrenal insufficiency secondary to AMN, but I'm not sure if I've ever had an adrenal crisis. I don't even know exactly what that would look like for me. It sounds like everyone describes it as being nauseous or diarrheal and not being able to keep down hydrocortisone, but few people actually explain what the crisis is or how it is different from just having the flu. I experience dizziness, weakness, and mild confusion fairly frequently, but these are such non-specific symptoms that may have a variety of causes.
I can only describe my usual symptoms (2 out of 4 attacks this year and previously). I awake hot, sweating but with the shivers. I have a blinding headache, my stomach feels off, sickly and if I stagger to the toilet I'm so weak my legs almost or actually give way. I'm tired and listless and I can barely manage a conversation, 1 or 2 word answers.
Unfortunately I've been having these episodes for at least a dozen years so I know these symptoms well. However, until July this year I didn't actually know what they were.
When I'm feeling really ill I take 3 X or 4 X dose of Hydrocostisone I've taken this for a week in the past, it what your body does naturally! Do you have a injection kit? I have Dexamethasone but I've never used but when I was in crisis last year the paramedic gave it to me!
I hope your endo will get you sorted soon
All the best
Steve
PS I take Hydrocostisone 10mg on waking 5mg 1pm and 5mg 4pm
Treble your daily dose is 60mg, that is only double mine. I'll have to see what the endocrinologist has to say before going above 60mg a day as I don't know if I would be doing any long term damage.
I was at the endocrinologist on Monday. They have advised me to take 3 doses of 10mg hydrocortisone a day at 7AM, 1PM and 6PM. At present I'm still taking 20mg on a morning as I have been on antibiotics due to a water infection.
He also advised me that as well as doubling my dose when I'm ill to also take an extra dose at bed time to see me through the night.
KeithS How similar are your symptoms to migraines? I've had migraines in my past (I'm 52) and I've learned to prevent the triggers so it has been a while. That is until this week. I have a tendency to get dehydrated when I work out and it happened this week. I woke 2 mornings later with a blinding headache and had mild nausea. I had to sleep it off and missed work. I was much better that same evening after drinking some water.
In the meantime, I have had dizzy episodes but it passes very quickly.
I've always tested negative for adrenal insufficiency, but it has been a few years since I tested.
Hi Julie, I've never suffered from migraines but as I said I get all 6 symptoms I listed earlier. Weakness and confusion (although I would describe as extreme fatigue and the desire to be left alone) for example are always present. My sister has AMN, does suffer migraines and hasn't got Addison's?
Hi Keith, that's interesting about your sister. I suppose headaches are symptoms. I have weakness in the form of not being able to carry the loads I used to carry while walking. If I'm standing still or at least not walking, I'm rather strong.
It's also interesting that there is the desire to be left alone. This year, I've been thinking of ways to shorten my time around others (and their energy) and am staying home more often than I've ever done. At the same time, I don't want to lose touch!
My migraines were brought on due to IV medication I was being treated with for breast cancer. Since stopping the medication, I’ve had no further migraines. Low dose beta-blockers worked a treat for me to prevent the migraines.
Hi, Keith, my Endocrinologist has always told me to take my afternoon dose no later than about 5pm as the body naturally doesn't produce any cortisone after that time? I take my last dose at 4pm!
Hi Keith, I forgot to say I had a flu jab last week, I have them every year, do you get one? If you don't it might be worth asking your GP as they are being done now.
Bit of an update. I think I've had another couple (maybe 3?) of episodes since my last post. I'll tell you about the last one. We've had a snowy winter by UK standards, with 2 cold snaps and a few inches of snow that hung around for a week. During the first spell I drove to work and was stuck behind people in the snow and also got stuck myself. I got a friendly push to get going. I drive an automatic car and the triptronic gears tripped out twice so I had to disconnect the battery, count to 30 and reconnect. The half an hour journey took 1 hour 45 minutes. After 90 minutes I started to feel unwell. I got to work but just took extra tablets and drove straight home. I was off for 2 days before I returned to work. I did a bit of research and found adrenal crisis can be brought on by stress. The journey was very stressful, I was late for a meeting too. I told the endocrinologist about the above on Monday, she said stress isn't proven. I was fine before setting off and ill after my stressful nightmare journey so I'm convinced stress brought on my latest crisis. Good to know as I can perhaps nip it in the bud next time by taking extra hydrocortisone when stress levels are rising.
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.
Could this be AMN? Elevated VLCFA and white matter changes with adrenal insufficiency
Symptoms? Onset of AMN?
Developing Addison's in 40s
Bone marrow trans plant is a go!!!
