Hydrocortisone Dosing for Adrenal Insufficiency

Posted on November 4, 2016 by MaryO
Allan S. Brett, MD reviewing Werumeus Buning J et al. J Clin Endocrinol Metab 2016 Oct.

In a randomized crossover study, higher doses resulted in modestly higher blood pressure.

No universally accepted glucocorticoid replacement dose exists for patients with adrenal insufficiency. When hydrocortisone is used, divided doses often are given to mimic natural diurnal variation (higher dose early, lower dose later). In this double-blind crossover study, researchers compared the blood pressure effects of higher and lower hydrocortisone doses in 46 Dutch patients with secondary adrenal insufficiency. Each patient received courses of high-dose and low-dose hydrocortisone (10 weeks each, in random order), according to a dosing protocol. For example, a 70-kg patient received 15 mg daily during the low-dose phase (7.5 mg, 5.0 mg, and 2.5 mg before breakfast, lunch, and dinner, respectively), and twice these amounts during the high-dose phase.

Mean blood pressure was significantly higher at the end of the high-dose phase, compared with the low-dose phase (systolic/diastolic difference, 5/2 mm Hg). Plasma renin and aldosterone levels were lower with high-dose than with low-dose hydrocortisone, presumably reflecting hydrocortisone’s mineralocorticoid activity.

COMMENT

Although the higher blood pressure with high-dose hydrocortisone was modest, it conceivably could be consequential over many years of treatment. However, these researchers have published quality-of-life outcomes from this study elsewhere (Neuroendocrinology 2016; 103:771), and those outcomes generally were better with high-dose than with low-dose therapy. This study was too brief to be definitive, but it does highlight potential tradeoffs involved in glucocorticoid dosing for adrenal insufficiency. Whether the findings apply to patients with primary adrenal insufficiency is unclear.

EDITOR DISCLOSURES AT TIME OF PUBLICATION

  • Disclosures for Allan S. Brett, MD at time of publication Nothing to disclose

CITATION(S):

  1. Werumeus Buning J et al. Effects of hydrocortisone on the regulation of blood pressure: Results from a randomized controlled trial. J Clin Endocrinol Metab 2016 Oct; 101:3691. (http://dx.doi.org/10.1210/jc.2016-2216)

From http://www.jwatch.org/na42734/2016/11/03/hydrocortisone-dosing-adrenal-insufficiency

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Severe fatigue, decreased physical activity in patients with Addison’s disease

Posted on March 18, 2016 by MaryO

van der Valk ES, et al. Clin Endocrinol. 2016;doi:10.1111/cen.13059.

Dutch adults with primary adrenal insufficiency reported abnormal or severe fatigue, reduced physical activity and significantly reduced quality of life vs. healthy controls, according to recent survey results.

In a cross-sectional study, Eline S. van der Valk, MD, of Amphia Hospital in Breda, the Netherlands, and colleagues also found that patients with Addison’s disease reported physical activity levels that were significantly lower than those reported by other Dutch chronically ill patients.

“The clinical relevance of the impaired [quality of life] and increased fatigue found in our study is supported by the size of the differences in scores and the restriction in physical activity in patients with [Addison’s disease], an important activity in daily life,” the researchers wrote. “Physical inactivity could be very detrimental in [Addison’s disease] because the prevalence of other cardiovascular risk factors is already increased, and it has been demonstrated that patients with [Addison’s disease] have an up to twofold increased mortality rate from [CVDs].”

Researchers analyzed survey data from 328 Dutch adults with Addison’s disease on stable glucocorticoid replacement therapy with hydrocortisone or cortisone acetate (mean age, 53 years; 223 women; mean duration of disease after diagnosis, 15.6 years). Participants attended outpatient clinics at University Medical Center Utrecht and Radboud University Nijmegen Medical Centre, or were members of the Dutch Association of Addison and Cushing Patients. They completed general and health-related quality of life (Short Form 36; Checklist Individual Strength) and physical activity questionnaires. Scores were compared with a random sample of 1,718 adults who completed a Dutch National Health Survey (controls).

Within the cohort, 53% of participants had isolated Addison’s disease; 74.1% received hydrocortisone therapy; 25.9% received cortisone acetate therapy; 87.2% received fludrocortisone therapy; and 23.2% received dehydroepiandrosterone replacement therapy.

Researchers found that 45.7% of participants with Addison’s disease met the standard of physical activity (Dutch standard of healthy physical exercise, defined as moderately intensive physical exercise for 30 minutes daily 5 days per week; “Fitnorm,” defined as 20 minutes of intensive physical exercise at least 3 days per week) vs. 67.8% of controls (P < .01). Researchers found 61% of participants with Addison’s disease reported abnormal fatigue, and 43% reported severe fatigue. Mean fatigue scores were significantly higher vs. controls (mean difference, 32.6; 95% CI, 24-41).

In both men and women with Addison’s disease, researchers found that quality of life scores in all component summaries were significantly decreased compared with controls, particularly in participants aged 65 years and younger. – by Regina Schaffer

Disclosure: The researchers report no relevant financial disclosures.

From http://www.healio.com/endocrinology/adrenal/news/online/%7Ba8914384-d40e-41ab-aa1c-134d856d2edd%7D/severe-fatigue-decreased-physical-activity-in-patients-with-addisons-disease

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Interview with Fabiana October 21

Posted on September 29, 2015 by MaryO

Fabiana had transsphenoidal surgery (pituitary) July 30th 2004.  She had a recurrence after seven years of being Cushing’s free.  A second pituitary surgery on 10/26/2011 was unsuccessful.

Another Golden Oldie, this bio was last updated 9/12/2015

interview

Fabiana will be our guest in an interview on BlogTalk Radio  Wednesday, October 21 at 6:00 PM eastern.  The Call-In number for questions or comments is (657) 383-0416.

The archived interview will be available after 7:00 PM Eastern through iTunes Podcasts (Cushie Chats) or BlogTalkRadio.  While you’re waiting, there are currently 88 other past interviews to listen to!

~~~

Well it has taken me a year to write this bio…and just to give some hope to those of you just going thru this process…I have to say that after surgery I have not felt better! I am back to who i always knew I was….the depression and anxiety is gone and I am living life like a 24 year old should!

I guess it all started when i was sixteen (hindsight is 20-20 i guess). My periods stopped i was tired all the time and the depression started. We all kind of just chalked it up to being sixteen. But my mom insisted something was not right. we talked with my gyno…who said nothing was wrong, I had a fungus on my head (my hair was getting really thin) and sometimes girls who had normal periods (in my case three years of normal periods) just go awry.

My mom wasnt hearing that and demanded a script for an endo. I went….he did blood work…and metioned cushings. But nothing came back definitive…so they put me on birthcontol and gave me some hormones and the chushings was never mentioned again because that all seemed to work.

As time went on my depression got worse, the shape of my body started to change-my face and stomach was the most noticeable- and my energy level kept going down. I kept going back to the doctors asking to be tested for mono..or something. I went to a psycologist….but i knew there was no reason for my depression. Two of them told me “i had very good insight” and that I didnt need them. I started getting more anxiety..especially about going out socially.

High school ended and my typical optimistic personality started to decline. I put on a good act to my friends but my family was seeing me break down all the time. I went away for college (all the while gaining weight). My sophmore year I had a break down..I called my family crying that i needed help. I couldnt beat my depression. I didnt drink in college because i knew that would mean instant weight gain, i barely went out…i exercised everyday..hard….i joined weight watchers…i stuck with it. I was at 103 lbs….that crept up to 110…that crept up to 117…each time my weight goal would be “ohh if i could just get back to 108..112…115” with each weight gain my original weight goal would get higher and higher.

Internally i felt like I was constantly under a black cloud..i knew there was no reason why i shoudl feel this way..i was doing great in school, i had a supportive family, an amazing boyfriend and great friends…why was i depressed? I was becoming emotionally draining to the people closest to me…I would go home a lot on the weekends…i was diagnosed with PMDS….like severe PMS..and was given an antidepresant…i hated it it made me feel like a zombie…i stopped taking it and just made it apoint to work on fighting the depression….and the weight gain.

When i was done college i was about 120 lbs. My face was getting rounder and rounder..i was noticing more hair on my face and arms…and a hump between my shoulder blades and the bottom of my neck. My mom saw a tv show about Polycystic ovarian syndrome and felt that maybe that was what was going on with me…i went to my PCP with this and she said it was possible and that i should to talk to my gyno….I am 4’8 and at the time weighing close to 125..i talked to my gyno and she said I was not heavy..that i was just “itailan” ..i told her my periods were getting abnormal again even w/the birthcontrol and that i was so tired all the time and my arms and legs ached. I also told her that i was bruising very easily…and that the weight gain would not stop despite my exercising and following the atikins diet very strickly for over 6 weeks. My boyfriend and I decided to try the diet together..he lost 35 llbs in 6 weeks..i lost NOTHING! I went back to my PCP who ordered an ultra sound of my ovaries…..NOTHING.(i kept thinking i was going crazy and that it was all in my head)….she also decided to do some blood work…and as i was walking out the door she said..”you know what..i am going to give you this 24hr urine test too. Just so that we cover everything”. I just kept thinking please let something come back ….please dont let this be all my fault…please dont let this be all in my head…..please dont let me be crazy. When i got the test results back it turned out that the 24hr urine test was the one test i needed to get on the right track to finding what was wrong. My cortisol level was 3x’s the normal.

I went to an endo…by the time i got to the endocronoligist i was up to 130…i could not work a full day without needing a full day of sleep and my body was aching beyond description. I was crying all the time…in my room…and was becoming more and more of a recluse…i would only hang out with my boyfriend in our houses. I looked my symptoms up on the internet and saw cushings…that was it! I went to the endo and told him..i think it is cushings….he said he had only saw it one other time and that he wanted to do more tests. I got CAT scans, x-rays, MRI’s….my adrenals my pituitary my lungs….he did a CRH stimulation test which was getting blood work done every fifteen minutes for 90minutes….it took weeks to get that test scheduled..no one had ever heard of it and therefore did not know how to do it…..finally after 3 months of tests my dr. felt he had enough evidence to diagnos me with cushings disease (tumor on my pituitary) I was diagnosed in March of 2004. By this time i was about 137 lbs i had to work part time (i am an occupational therapist for children..i do home visits….i could not make it thru a whole day)

In April i had to change to office work…i could not lift the children and i could barely get up off the floor. I have to say i was one of the lucky people who worked for people who were very supportive and accomidating…my boss was very willing to work with me and willing to hold my job for me.

July 30th 2004 i finally had transphenodial surgery to remove my tumor (they went thru my lip and nose because they felt my nose was too small). It is now over 1 year later….i am down to 108 lbs, i have so much energy…no depression….and i dont mind looking at myself in the mirror…i am enjoying my friends and my boyfriend…(who stayed with me thru it all) And my family. I feel healthy mentally, emptionally, and physically. And i just got back into my size 2 jeans!!!

It was a crappy time…(as i am sure you all can atest to) but i learned a lot…..most importantly i was bombarded by good wishes and prayers….friends requested masses for me…a nun in brazil prayed for me…people who i never thought i touched their lives…took the time to wish me well…send an email..or call….I got to experience the wonderful loving nature of human beings and i was lucky to be supported by my family (my mom, dad, and two younger brothers) and my boyfriend throughout this entire tough journey.

This experience taught me to realize the strength i have as well as to appreciate the good and the bad in life. I was on hydrocortizone for about 8 months…i was lucky that my tumor was in its own little sack so my pituitary gland was not touched. In the end in took about 7 years to diagnose me..i think that if the dr. at 16 would have pursued the cushings idea nothing would have been found because it took so long for my symptoms to really peak…needless to say i love my PCP and my endo ..and that i changed gyno’s…

I just want to let anyone out there going thru this disease to know..you are not alone….and to take each day is stride…when you need help ask for it….and that this road can lead to a happy ending. God Bless!

ps- it is ok to feel bad about what you are going thru…it is a tough thing to endure…and when the docotors tell you there is noting wrong…..follow your gut…and you keep searching for the doctor that will listen… If there is anyone in the philadelphis of south jersey area who needs someone to talk to please feel free to email me…fapadula@hotmail.com…i will help you out the best i can!

Update November 6, 2011

Well- here is an update, after seven years of being Cushings free it has returned.

With in those seven years I married my college boyfriend and we now have a son- Nicholas who will be 2 in Decemeber. It has been a blessed and wonderful seven years. However right around when my son was turning 1 I started to notice symptoms again. Increase facial hair, the whole “roundness” of my body, buffalo hump. I decided I was going to work out hard, eat right, and see – I didnt just want to jump to any conclusions. I stuck to it- and nothing…..my hair started thinning again and the acne was coming back and then the missed periods…..so I went to my PCP- told them i needed the 24hr urine and wouldnt you know…..427 cortisol level (on that 0-50 scale)……here we go again.

So back to endo- now at Penn Pituitary Center…..it was another journey b/c the tumor wasnt definative on MRI, and it seems to be cycling…..but I was diagnosed with Cushings again- with the option of 2nd pit surgery or BLA…….after some months of trying to make a decision I went with the 50/50 chance of the second pituitary surgery on 10/26/2011.

It didnt work- my levels never came down in the hospital and I went home w/ out of range cortisol levels and no need for medication……BLURG……Sooooo on to the next step…..after I recover from this surgery I will most likely have the BLA- with the hopes of not having to deal with Cushings ever again. This time around has been a little more difficult just with being a mom and feeling sick- but I still continue to be amazingly blessed with a supportive family and husband and we are surrounded by love and support and for that I am beyond greatful.

I keep all of you in my prayers for relief and health- as I ( we all) know this no easy journey.

Many Blessings!

Fabiana

Update September 12, 2015

So to bring this up to date. My second pituitary surgery in 2011 was unsuccessful. January of 2012 I had both of my adrenal glands removed. Going to adrenal insufficiency was a very difficult transition for me. It took me nearly 2 years before I felt functional. As time went on I felt more human, but I haven’t felt healthy since that day. I can and do function, but at a lower expectation of what I used to be capable of….my “new normal”.

My husband and I decided to try for a second child…my pituitary was damaged from the second surgery and we needed fertility…after 8 months of fertility I got pregnant and we had our second son January of 2015.

In April of 2015 we discovered that my ACTH was increasing exponentially. MRI revealed a macroadenoma invading my cavernous sinus. The tumor is sitting on my carotid artery and milimeterrs away from my optic chasim. I was not a candidate for another surgery due to the tumors proximity to.both of those vital structures.

So September 1st of this year I started daily radiation treatments. I spent my 34th birthday getting my brain zapped. I am receiving proton beam therapy at the Hospital of the University of Pennsylvania. I am so lucky to live so close to an institute that has some of the rarest treatment options.

Again Cushing’s is disrupting our life, my husband goes with me every night to radiation while family takes turns watching the kids….I am now on my 18th year of fighting this disease. I never imagined it would get to this point.

But here we all are making the best of each day, fighting each day and trying to keep things as “normal” as possible. Blessings to all of you fighting this disease…my new go to saying is” ‘effing Cushing’s”! For you newbies…Fight, Advocate for yourselves, and find a doc who doesn’t dismiss you and hang on to them for dear life.

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Filed under: Cushing's, Interview, pituitary, Rare Diseases, Treatments | Tagged: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | Leave a comment »

Hydrocortisone Replacement Patient Information

Posted on July 26, 2015 by MaryO

steroids
Patient Information

What is Hydrocortisone?
Hydrocortisone is a steriod hormone produced by the adrenal gland.  It regulates many of the bodies functions and is essential for life.
Hydrocortisone is taken as a replacement for the natural hormone where this is deficient, either because of pituitary deficieny of ACTH (the hormone that stimulates the production of hydrocortisone by the adrenal gland) or failure of hydrocortisone production by the adrenal gland.

How do I take it?
A common dose is 15-20mg orally split over two or three times daily, and depending on your individual Endocrinologist’s recommendations, e.g., 10mg before rising, 5mg at mid-day and 5mg at 4 p.m.

When would I need to take more hydrocortisone?

If you become ill then the body would naturally increase the output of steroid from your adrenals.  Therefore if you are taking replacement steroid (hydrocortisone) it is essential to mimic the natural response by increasing your dose appropriately.

How can I let others know I take replacement hydrocortisone?
When you are prescribed your medication you will be given a ‘blue steroid card’ from the hospital to carry.  You should also purchase and wear a medical necklace or bracelet, such as MedicAlert, to show your Cortisol replacement therapy.

Emergency Injections – should I have these at home?
It is advisable for all patients on hydrocortisone replacement to have a 100mg injection pack at home and for them or their partners to be taught how to administer it.  If you don’t have one of these already, you can ask your GP or endocrinologist if they will prescribe this for you.  Please check regularly that these preparations are not expired.  Some endocrine clinics will help to show you how to inject in an emergency.

When do I know that I would need an emergency injection?

If you cannot absorb your tablets, or your usual replacement wasn’t sufficient for an acute shock or illness, then gradually or perhaps quite quickly you would feel weak, sickly and light-headed.

Recommendations for changes in oral dose ‘The Sick Rules’
If you become unwell you should take additional hydrocortisone. The amount depends on how unwell you are and the type of illness. The pituitary foundation provides some sensible examples:

If a patient is unwell they should take additional hydrocortisone. The amount depends on how unwell they are and the type of illness. Some examples:

Situtation  Increase in dose Duration  Emergency?
Cold without fever   none
Fever, flu, infection         double dose duration of illness see GP after 48 hours
Vomiting > once, diarrhoea and severe illness Emergency 100mg injection if extra dose of 10-20mg cannot be kept down restart usual dose once stable Phone GP or go to A&E. Administer injection prior to this if emergency pack available (but still seek help)
Minor surgical procedure e.g. tooth extraction     20mg hydrocortisone before procedure resume on usual dose immediately afterward
Minor operation e.g. hernia repair  100mg im every 6 hours for 24 hours  resume on usual dose immediately afterward
Major operation e.g. abdomen or chest 100mg im injection every 6 hours for 24 -72 hours and eating and drinking reduce rapidly to usual dose tell the surgeon and anaesthetist before the operation
Endoscopy Double the dose the day before during bowel prep. For colonoscopy 100mg im before procedure take usual dose on the morning of the procedure drink lots of water to prevent dehydration. Inform your doctor.
Cystoscopy Double dose on the day of procedure. resume as normal inform your doctor.
Severe shock e.g. bereavment or road traffic accident 20mg as tablet or 100mg intramuscular injection See GP or hospital for further advice Sudden and severe shock may be classed as an emergency – seek advice
Long haul flight > 12 hours double dose on the day of the flight extra dose every 6-8 hours when the day is legnthened. Usual regimen in timing with sleep / wake cycle when day is shortened. Speak to your consultant before travel.
General stress, exams etc  not usually required ask GP if concerned

How do I cope if I’m travelling away from home?

You should travel with a 100mg injection kit  in case of emergency.  This injection should be placed in a small cool bag, labelled with your name and kept with you at all times during your journey. You should ask your GP or endocrinologist for a letter about your injection kit, medication and your doses prescribed.  This letter is essential to travel through security checks and will be helpful should you become unwell and have to see a doctor. It is wise to take an extra two weeks supply of hydrocortisone tablets with you in case you need to increase your usual dose whilst away.  All medication should be kept in your hand luggage.

Printable patient information

From http://www.imperialendo.com/for-doctors/hydrocortisone-replacement/hydrocortisone-replacement-patient-information

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Higher Cortisol Levels Found in Hair of Patients With Adrenal Insufficiency Using Hydrocortisone

Posted on April 9, 2015 by MaryO

Patients on hydrocortisone replacement for adrenal insufficiency appear to have elevated cortisol concentrations in their scalp hair, according to recent findings.

In the cross-sectional study, Nienke R. Biermasz, MD, PhD, of Leiden University Medical Center in the Netherlands, and colleagues evaluated patients treated at the outpatient clinical of the medical center between July 2012 and January 2014. Participants included 132 adults with primary or secondary adrenal insufficiency being treated with hydrocortisone (group 1) and 42 controls with a pituitary disease receiving hydrocortisone (group 2). A third group of 195 healthy controls were also included in the analysis.

The researchers collected locks of roughly 150 hairs cut as close to the scalp as possible. The most proximal 3 cm of hair were used in the analysis to correlate with the most recent 3 months. The researchers extracted cortisol from the hair and used ELISA to measure cortisol concentration.

The researchers found that compared with healthy controls and group 2, group 1 had a higher hair cortisol concentration (P < .001) and hair cortisol concentration was associated with hydrocortisone dose (P = .04).

Male participants in group 1 had higher hair cortisol concentrations compared with women in the group (P < .001).

Compared with healthy controls, group 1 had a higher mean BMI (P < .001) and BMI was associated with hair cortisol concentration in the overall sample. The association between hair cortisol concentration and BMI was especially strong in men.

According to the researchers, further studies are needed to better understand the sex-specific associations between hair cortisol concentrations and hydrocortisone use in this population.

“Intriguingly, this gender effect seems to be specific for hydrocortisone use, since it is not present in controls with an intact [hyptothalamic-pituitary-adrenal axis],” the researchers wrote. “In female patients, higher self-reported hydrocortisone intake was associated with higher [hair cortisol concentration], whereas this association was not found in male patients who demonstrated on average higher [hair cortisol concentration] even in the lower dose range.” – by Jennifer Byrne

Disclosure: The researchers report no relevant financial disclosures.

From http://www.healio.com/endocrinology/adrenal/news/online/%7B1d2660eb-3f68-4302-94b2-321f73a4ee89%7D/higher-cortisol-levels-found-in-hair-of-patients-with-adrenal-insufficiency-using-hydrocortisone

Filed under: adrenal crisis, Cushing's, pituitary | Tagged: , , , , | Leave a comment »

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