My Life With Adrenal Insufficiency

Preventing An Adrenal Crisis

ADRENAL cRISIS

Preventing An Adrenal Crisis

This week has been a difficult one for me and my Adrenal Health and I want to speak out about preventing an adrenal crisis.. I have Adrenal Insufficiency and I became seriously unwell. Developing symptoms of low cortisol can sometimes happen suddenly when the body is placed under sudden stress but on many occasions for me it usually happens over a period of time hours or days.

ADRENAL cRISIS

Last week I had a period. Officially in the text book which is about 70 years old a regular period does not cause enough stress to make Cortisol levels drop.

However I wrote a blog post about this asking if Women’s periods can cause Adrenal crisis and the consensus from the women with AI who I spoke to is that a period does in most cases require additional cortisol to be produced and therefore for someone with Adrenal Insufficiency more Hydrocortisone medication may me needed. Without the top up of cortisol one may very well end up in hospital very unwell.

periods

For me having a period has always made my Adrenal Insufficiency problematic. I think it comes down to the fact I have a diagnosis of PCOS Polycystic Ovarian Syndrome. Ever since I started my periods, I’ve been irregular, had scans, been repeatedly told I have PCOS and as a result I’ve had really bad and really painful debilitating periods.

No wonder when I do get an irregular period, my body becomes stressed, my cortisol drops and I end up in hospital. This is what usually happens every single time my period arrives. Whilst one might say get rid of your periods, get contraception which stops a period all together, have a hysterectomy or a coil fitted. I may not want to add more hormones into my body and screw it up even further.

I don’t think the solution should be to tell an Adrenal Insufficient women she should medically stop her periods to prevent the risk of crisis. What if an Adrenal Insufficient women would like to become a mother? The problem is not stoping the period but managing it so that the patient does not head into an adrenal crisis each time during the month.

So this week, despite going into hospital almost every time I have a period, I managed to stay home and prevent a full blown crisis. I was in pain, weak, low in Iron, dizzy and unwell but I survived. I certainly headed towards an adrenal crisis twice on two days. I had the stabbing pains, the confusion, the drop in blood pressure and the sudden runs which you get when you begin to head towards adrenal crisis but I managed to stop it progressing by following certain stress dose rules, rules I had never read until this week.

Usually I’m told to double up if I get unwell. Double up if I have a fever or illness or if I have the runs. However if my evening dose is 5mg and I take another 5mg it may not be enough to keep me from going downhill fast.

This is where the NEW INFORMATION, I got came in handy. I was sent information written by Juan-Andrés Rivera a Professor of Endocrinology based at the Department of Medicine McGill University Montreal Quebec Canada.

The text was very useful and made it clear that when heading towards an Adrenal Crisis rather than just doubling as you would when unwell, I am to take the equivalent of a whole days dose of medication. So for me who has 20mg of Hydrocortisone broken up over a day, when I am adrenally low I would take 20mg of medication and see what happens. If the 20mg helps then I can rest and start to recover and continue my 3 days of double dosing but if I get worse then I take my 100mg emergency shot.

Why have I not been told this before? I was told, If your unwell double up. If your in crisis take a 100mg emergency shot. However when I have an emergency shot, I then by default have to go to hospital to be checked over and treated.

I never heard of an in-between dose which can keep me from tipping over the edge where I need to go into hospital. So, as I received this information as I was heading to a crisis, my husband read it and gave me a 20mg of hydrocortisone and guess what, I was still very unwell but I did not go into the next stage of Adrenal Crisis. I managed to prevent it getting worse until of course about 24 hours later when things started to go funny again and I repeated the process.

Having Adrenal Insufficiency is tough. Every Endocrinologist has a different set of rules and guidelines and opinions on what to do. Medics are often unsure themselves and when I end up in hospital my adrenal issues are generally prolonged due to doctors not knowing what to do or nurses being too busy to give me medication at the right time.

Heck during my last stay in hospital, I did not see an Endocrinologist in 8 days and so they guessed how much medication to give me making me more unwell because it was not correct. A doctor also mistakenly ticked it off my medication chart and my life was put at serious risk as I had to go 14 hours with no life saving cortisol medication due to a Doctors error.

We need to follow our doctors directions but at the end of the day, Adrenal patients are being given information from the 1970’s and we need to work with our specialists to let them know what works for our bodies. Working together with the endo can help them to see what we need and help ourselves to prevent a full blown life threatening crisis.

We must always follow the advice of the medics treating us but…we also must advocate for ourselves and tell those with little experience in this rare illness what works for us.

I will be speaking to my Endo in August and telling him that I prevented a full blown crisis by taking 20mg and I’m sure he will advise me to do that next time. What if…I have hit the jack pot with this piece of gold. This little piece of information which i never had before and my endocrinologist certainly does not have?

Maybe I will still get very unwell but if I treat my low cortisol symptoms in this new way I have read, maybe I can keep myself home with the family more?

It’s food for thought and certainly something I am going to be discussing. Of course if I have continuous vomiting I would still need to head to hospital for IV steroids but maybe  a simple double dose is not enough when my body is under too much stress.

This is a learning curve and something others may find interesting. I recommend always discussing treatment with your own personal Endocrinologist but for me I have this week prevented an Adrenal Crisis not once but twice using this method.

I’m sharing the info here on the blog and hope this may help others to learn more about managing this dreaded disease especially during times of low cortisol.

Document by Juan-Andrés Rivera a Professor of Endocrinology based at the Department of Medicine McGill University Montreal Quebec Canada. 

Management of Emergencies in patients with Adrenal Insufficiency Symptoms

1. Onset can take place very quickly over minutes or hours
2. Patients experience fatigue, nausea, vomits, dizziness, light-headedness, abdominal pain, confusion, headache, somnolence
3. It can present exactly as if it was a gastro, a stomach flu or peritonitis
4. Fever is common even in the absence of a real triggering infection. However, once the patient is stabilized infections should be ruled out because often they are the precipitating event
Precipitating Events
1. Infections, particularly gastroenteritis, are the most frequent causes.
2. Surgery, strenuous exercise, emotional stress and accidents.
3. Cessation of glucocorticoid therapy by the patient (or by the attending physician)
4. In approximately 10% of cases the cause cannot be identified
Exam and lab findings
1. Hypotension (systolic BP below 100) or hypovolemic shock
2. Paleness, shallow pulse, decrease sensorium, tachycardia
3. Fever or slight elevation in body temperature
4. Hyponatremia and or hyperkalemia
5. Hypoglycemia or reduce need for hypoglycemic agents in diabetics
Treatment
1. ADRENAl CRISIS GRADE 1: Patient able to swallow and not vomiting
a. As soon as suspected, whether it ends up being a real adrenal crisis or not, the patient must take an extra dose of cortisone or hydrocortisone or dexamethasone or prednisone immediately, equivalent to the total daily dose (TDD) regularly taken. For example, a patient taking Cortef 10mg in the morning, 5mg at noon and 5 mg at supper, would take 20mg as soon as symptoms of adrenal crisis are suspected.
b. The TDD should then be repeated every 4-8 hours, depending on symptoms, for a total of 2-4 fold the TDD per day for the duration of the precipitating event, for instance a bad cold.
c. If symptoms persist or worsen, the patient should call her or his primary care doctor for assistance or visit an emergency room. If patient starts to deteriorate, for instance feeling weakness, nausea, vomiting, somnolent, despite following a & b above, the emergency kit of solucortef® 100mg should be used as soon as possible and as the patient is taken to the nearest emergency room.
2. ADRENAL CRISIS GRADE 2: Patient is unable to use the oral route either because of persisting vomits or because of depressed level of consciousness
a. Solucortef® 100 mg via intramuscular (ideally) or subcutaneous should be given by the patient him or herself, the first responders or a trained relative or accompanying person at the scene. The emergency kit carried by the patient or the first responders should be used. The deltoid muscle (arm), the supero-external quadrant of the gluteus, or the external quadriceps can be used to inject the diluted solution of solucortef®.
b. Transport to the nearest emergency should follow.
c. What follows is dictated by the state of the patient. In general the following applies:
i. An IV dose of 100mg of hydrocortisone should be given as soon as an IV access is established. This should be followed by an IV infusion of 200mg / 24h or 50mg every 6 hours for the first 24 h.
ii. IV hydration started with NS or D51/2NS bolus of aprox 10-15ml per kg of body weight during the first hour, followed by 100-200cc per hours until stable and able to eat.
iii. Blood sample then taken for electrolytes, creatinine, glycemia, CBC, and if appropriate troponins, liver enzymes, urine and hemo-culture, chest x-ray, etc.
iv. EKG as appropriate
d. In general there will be significant clinical recovery over the first 24h. If the patient status of profoundly impaired health does not improve in the first 24h with the treatment described above a different medical problem should be ruled out (intestinal perforation, meningitis, hepatitis, pneumonia, CVA, IM, etc)
e. If improvement occurs as expected within 24h, on the second day the patient may be switched to the oral route for the hydrocortisone or cortisone acetate as follows
i. Hydrocortisone equivalent dose of 30mg tid on day 2
ii. Hydrocortisone equivalent dose of 30mg bid on day 3
iii. From day 4: Pre-admission dose of glucocorticoids or a slightly higher dose if insufficient dose is considered to be the cause or if persistently ill but recovering
3. ADRENAL CRISIS GRADE 3: Patient is unconscious, in hypovolemic shock.
a. In addition to 2a, 2b, and 2c above, admission to ICU for close monitoring. Adrenal crisis are deadly and some authors refer to a point of no return which, if reached, the outcome will be fatal regardless of the intensity of the treatment provided afterward.
b. When admission to the ICU is necessary full recovery may take several days
Prevention
i. Patients with adrenal insufficiency MUST wear AT ALL TIMES their medical alert medal or bracelets with the Adrenal Insufficiency warning
ii. Patient MUST carry with them also at all times their Emergency Kit with Solucortef® 100 mg.
iii. In case of high mental or emotional stress or strenuous (out of the ordinary for the individual) exercise an extra-dose of about 50% the TDD should suffice. So for the patient taking cortef 10-5-5 it would be an extra dose of 10mg for the day of the event only, and taken one hour before the event (for instance an exam, an appearance in court, a funeral, etc).
iv. In case of introduction or discontinuation of certain medication dose adjustments may be necessary:
1. Starting or stopping oral contraceptives or estrogen replacement, anticonvulsants, thyroid hormone treatment, mitotane, carbamazepine, St John’s wort, and rifampicin (dose of cortisone may need to be increased or decrease respectively)
v. In case of fever >38 < 39º C the patient should double the hydrocortisone dose. In case of fever > 39 °C the patient should triple the dose of Cortisone. This dose is maintained as long as the fever persists and rapidly (within 1–2 days) reduced to the standard replacement dose after recovery.

 

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To Read More about my health Journey visit the Adrenal Diaries.

8 Comments

    1. Hi Angela,

      Would love the opportunity to talk with you. My dear friend has severe AFS. Too much to put into writing but because conversations are limited, I am limited in what I know and how I can support her. My intentions are to gain more insight so I can better support her. I am very familiar with everything adrenal because I am in the moderate range. Donna referred me to you. Please let me know if you are able to chat some time, I would love to hear more about your journey. I wish you well and will keep you in my prayers. Thank you!

  1. Thanks heaps Angela I have saved and filed the above emergency information I’m glad it’s helped you. Even though since my diagnosis two months ago my Addison’s has been stable and I’ve been fine I’m still trying to be as organised as I can just in case. A couple of days ago I finally got off my arse and went to get my script for my emergency hydrocortisone injection. Suprise, surpirse I went to three different chemists until I found one that actually stocked it. Then the pharmacist had to order it especially then I came in this morning and they still don’t have it. They kept asking me when I need the script and when I’m next seeing my doctor, Then the penny dropped for me they thought the script was for a medication that I have to take to the doctor not to have on standby for an emergency. Thanks again and take care

  2. Thank you so much. I have Adrenal Insufficiency and your help is crucial. Where I live, even the endocrinologists are clueless about it. I’ve been told so many different things, I have no idea how to treat my illness and fall into crisis at least once a month. The ER didn’t even know what it was. Now I feel like I have a grasp with your information and I can start to dig out of this mess. Anything you can tell me would be helpful.
    Thanks again!

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