Can you donate blood with adrenal disease?

Donating blood is one of the most selfless acts a person can do, but when you have a life-threatening illness such as adrenal insufficiency, there are questions as to whether you are allowed to donate blood or not.

Can adrenal disease patients donate blood?

donateblood (2)

The answer is complicated.

Some countries/territories allow blood donation from adrenal patients and others do not. It is ultimately dependent on the regional medical director’s decision of a particular organization.

According to the Pituitary Foundation, Addison’s disease is listed as a permanent deferral which means those with this diagnosis are permanently banned from donating blood.

The Joint United Kingdom (UK) Blood Transfusion and Tissue Transplantation Services Professional Advisory Committee states that anyone diagnosed with any form of adrenal failure “Must not donate.” 
When we searched the American Red Cross website for adrenal disease information, we found no search results that pertained to whether adrenal patients could donate or not.
You can review the full eligibility requirements here.
To answer, the original question, Can you give blood with adrenal disease?
It depends on where you live and what organization is accepting blood donations.
If you are eligible to donate in your area, remember it is also a personal choice.  You should discuss it with your doctor to determine your risks and benefits of blood donation. 

 

 

 

 

 

Sources:

https://www.mskcc.org/about/get-involved/donating-blood/additional-donor-requirements/medical-conditions-affecting-donation

https://www.pituitary.org.uk/information/living-with-a-pituitary-condition/donating-blood/

https://www.redcrossblood.org/donate-blood/how-to-donate/eligibility-requirements/eligibility-criteria-alphabetical.html

https://www.transfusionguidelines.org/dsg/wb/guidelines/ad003-adrenal-failure

 

Interview with Adrenal Alternatives Affiliate- Lisa Baker

Interview with Adrenal Alternatives Foundation Guest Affiliate- Lisa Baker

Lisa CWC CNHP RNHP

 

Q- Please introduce yourself.

A- Lisa C. Baker, CNC, RNHP, CWC

I seem to have had several lives!  I was an Associate Editor of an International trade magazine for many years, and then as a Federally-enrolled Native American, I moved to the jurisdictional area of my tribal government and worked in the Language, History and Culture Department, also becoming the Director of the Museum and Tribal Historic Preservation Officer.  During this time, I was very involved with tribal ceremonial grounds, and worked with women’s medicine.  In preparation for retiring, I decided to go back to school and study alternative and holistic health so that when I finally retired, I could help people (especially adrenal patients) as much as possible!  I became certified as a Holistic Nutritionist, and also became registered as a Natural Health Practitioner.  I was working on my Naturopathic Internship with a licensed naturopath in Oklahoma, but when we moved back to Kansas, the legal requirements were different.  So, in order to continue helping people, I have just completed certification as a Wellness Coach.  I also was an international recording artist for many years, composing and recording under the name of Lisa LaRue 🙂  I have also been  ordained  for nearly 20 years, and have done weddings, funerals and other ceremonies!

Q- How were you diagnosed with AI?

A-  My mother had Congenital Adrenal Hyperplasia (CAH), so it was a concern as to whether or not my father was a carrier, thereby affecting me.  This was way back in the early 1960’s, so there were no DNA tests, etc.  As an infant, I had many problems requiring extra salt which was all they would do for salt-wasting children at the time.  I was always sick.  I missed many, many days of school weeks at a time, and my doctor would not even allow me to participate in Physical Education.  As I entered puberty, I would have huge menstrual periods that would last for weeks, but I’d only have them every 9 or 10 months.  I started growing sideburns and a moustache.  I also had my very first ovarian cyst which burst at age 17.  At that point, I saw an endocrinologist who knew it was adrenal right away when I had a consult with him.  After giving my history, he did all of the testing and verified I had 21-hydroxylase Congenital Adrenal Hyperplasia.  As is true with a number of CAH patients with this form, cortisol is not always low, but is cyclical.  However, he put me on daily dexamethasone which I took before bed, and within a few years I had developed Cushing’s Syndrome from overmedication with steroids.  It took a LONG time to get that resolved, as well as all of the terrible side effects.  Today, I am much healthier, and take fludrocortisone daily because my aldosterone levels are consistently <0 – 1.6, but I take hydrocortisone as needed for illness, and times I have just figured out that something is off.  I have had to inject about 2-3 times a year the last 8 years.  My endocrinologist has explained to me that they do not have much research on how CAH behaves after menopause, because there are not that many patients who reach an older age, so they’re not really sure how it changes, but it does!
My mother lived to be 65, but she had also had a bilateral adrenalectomy, which her doctor believed in the 1970’s was a cure for CAH.  I do know of several people in CAH support groups who are in their 60’s.  I am soon one of them!

Q-What is one piece of advice you would give to any adrenal disease patient?

A-  Know thyself.  What I mean by that, is each person is different.  Some people with adrenal insufficiency can run a mile and be fine, others can only do it if they updose first.  Yet another might not ever be able to dream of doing it.  Be aware of your body and when it has needs, because fulfilling those needs are the only way you can run your body safely.  You don’t wait until your car runs out of oil to give it more, or you will have damaged lots of parts.  That’s the way salt is.  And if you ran out of gas, it’s over, you’re not going anywhere.  And that’s the way cortisol is.  Know when your engine needs a rest, or clean filters, and when it CAN run a race, don’t overrun it and let it rest after.   Also, do not follow trendy diets.  Those are designed for healthy people.  Each illness adds a different dimension to what your body needs or doesn’t need.  Nutrition needs to be very tailored when dealing with any illness.
Can I give two?  Because my second piece of advice is just as important.  Don’t rely on the doctor’s pills for everything.  YES, we NEED cortisol and fludrocortisone if we want to live, but don’t fight your body.  If you are diabetic, you really know you shouldn’t eat carbs and sugars even though you’re taking insulin, right?  It makes you need MORE insulin, and makes your body have to fight even harder to get the effects of the insulin.  Cortisol is the same way!  Be mindful of other ways to compliment the steroid, and help your body manage the best it can!

Q-How has adrenal disease changed you as a person?

A- I’m pretty used to it, as I’ve had restrictions my entire life because I was born with it.  But I guess the biggest way it has influenced me is that knowing I could not only die at any time from an adrenal crisis gone wrong, or early because the CAH odds say so, has made me want to avoid drama, find peace within myself and others, and help people as much as I can.

Q-What do you find is the biggest challenge with adrenal disease?

A- There’s a bunch!!  Trying to get people to understand ‘it’s NOT adrenal fatigue!’  Trying to get people to understand when I need help (solu-cortef injection, or mega-electrolytes for example).  Finding endocrinologists who understand adrenal disease as many are just Diabetic and Thyroid doctors.  And worrying what I would do if I had an adrenal crisis and nobody was around me that understands how “I” need treatment.  My biggest frustration is that when our cortisol gets out of balance, we don’t realize how our behavior is at the time.  Lack of oxygen to the brain due to low blood pressure, sugars going wrong, organs starting their shut-down procedure – and instead of helping us, people get mad at us and then cause our situation to get worse.  It’s like giving cake to a diabetic.  I certainly wish there were a way to get people to understand that if you start behaving unlike your normal self, you need some intervention.  Not just for the sake of behavior, but to save you from organ damage or even death!

Q-If you could change one thing about adrenal care, what would it be?

A- Doctors allowing patients to direct their own treatment, and to include alternative methods or rather, non-textbook methods, if they work and are not harmful.  Many doctors go ‘by the book,’ and as Adrenal Insufficiency is relatively new to treatments (with fludrocortisone and hydrocortisone both being the original and still the only medication, I would like to see them more willing to be open to other solutions.  That’s the only way treatment for AI will advance like other conditions have.

Q-What is something you wish every endocrinologist understood?

A- That patients’ own experience is helpful in treatment, and that the main reason for being a doctor is to help someone.  If the textbook chapter didn’t cover it, that doesn’t mean it’s bad.  And to allow patients the ability to use methods that are not covered by insurance if they feel like paying for it themselves.  Of course, this involves politics, so …..

Q-Tell us about your book?

is a book that is appropriate for both patients of Addison’s Disease and all forms of Congenital Adrenal Hyperplasia.  In it, I discuss each illness and their differences, the testing that is helpful for each, how they are diagnosed, and more information to make AI understandable not only for the patient, but for caregivers, friends and family.  It continues and focuses on foods, vitamins and minerals, activities, and daily regimens for those with AI so that they get the most benefit from their doctor-prescribed treatments and hopefully enjoy a better quality of life.  It also serves as a guide to what you should be expecting from your doctor, as well as what you should be expecting from yourself.

Q-Tell us about your work with adrenal patients?

A- I do not treat adrenal patients, but I work with them on “Wellness.”  Wellness is not just physical, but mind and spirit, as well.  They are all interconnected.  And while we may be ill, we can still have a bit of Wellness.  I work with patients on helping them evaluate their symptoms and learn trends that may be warnings, help them evaluate their eating and nutrition status and how they can make changes, physical activity, and spiritual.  I help them make decisions on ways to get along with their body, have a positive outlook, and keep from fighting their medication with unhealthy behaviors.  Adrenal patients have to watch so many things!  For example, Lavender!  People love their lavender oil, and it is indeed lovely, but it also lowers cortisol.  So, if you are making any at all, it will reduce it and then you’ll have to take more meds.  I’ve known of people even going into crisis because of lavender in their pillows.  I am here to help them with wellness as a coach with a background in not only nutrition and healing, but as a lifelong adrenal patient.  I understand what they need, how they feel, and help guide them through it covering all of the basis to achieve a life of Wellness.
Lisa sick not sick

Thank you Lisa Baker for sharing your story with Adrenal Alternatives Foundation!

For more information on her book, Living with All Forms of Adrenal Insufficiency: Not Fighting Your Body please visit the hightlighted link.

When Invisible Illness Becomes Visible

Awareness about invisible illness is something that this foundation is incredibly passionate about. Those who suffer with diseases and conditions that cannot be seen are scrutinized by those who simply do not understand.

Conditions like Addison’s, Cushing’s and most adrenal diseases cannot be seen by the human eye but effect the lives of so many sufferers.

But what happens when your invisible illness suddenly takes on a visible form?

Which is worse; Looking well but being sick- therefore having people assume you are lazy and unmotivated  OR being sick and looking sick and having people stare at you in confusion; knowing something is wrong but not having the compassion to understand?

In either of these situations, people with chronic illness feel misunderstood.

My illness took on a physical form after my diagnosis of adrenal disease.

My body now bears the exacerbation and side effects of poor steroid absorption. Before I was on the cortisol pump  I was on steroid tablets, which I did not absorb and got very sick.

My once clear, ivory skin now bears the unfortunate appearance of acne, my figure is now in double digits instead of the quaint size “8”  I  formerly was and my body bears the bright purple/red stretch marks and scars resulting from my surgery and the mismanaged cortisol medication.

Every time I take a bath, I want to fight back tears. I want to scream and escape from the cage that my  body is. This cage is painful and unattractive. My once invisible illness has taken on a very visible form. I no longer can hide the fact that I am sick. No amount of exercise and make up can fix my body now. My diet is a strict as possible and I am in an intense physical therapy program for exercise and muscle strengthening. In chronic illness, there are just some things that cannot be controlled. I have to accept who I am now.

Self worth should never be dependent on looks. It is truly inner beauty that counts.

How someone treats another person is the TRUE reflection of who they are.

Anyone can have a pretty face, but not everyone can have a pretty spirit after going through darkness, pain and tragedy.

“True self control is controlling your thoughts, actions and feelings when nothing is the way you feel it should be.”

When I look at my body now, I have to realize that I did not choose this. I did not make bad decisions to cause any of the problems I have. Guilt is the worst thing a chronic illness sufferer can harbor in their spirit. It destroys us and is absolutely an unnecessary emotion.

Most of us with adrenal disease have struggled with our looks. Before my diagnosis, I was 87 lbs at 5’4….then four years later before the pump I ballooned to an obese size.

 

But you know what? My heart remains the same.

 

The only size that should matter is the size of your heart.

 

We have enough to battle, let’s not battle our own spirit as well.

You did not choose your illness, but you do choose to bravely fight it every day.

Whether your illness is visible or invisible, I hope you accept yourself for the strong warrior that you are.

If you are struggling with self acceptance, please reach out to us, we have counselors available to help you!

 

Wishing you Comfort &Cortisol,

Love, Winslow E. Dixon

The Adrenal Alternatives Foundation Founder

 

How to Be Tested for Adrenal Insufficiency

Adrenal disease can be life-threatening and is rarely tested for. This post was written to explain how to be properly tested for adrenal disease. This is not to be used to diagnose or treat any condition. Contact your doctor before starting or stopping any medication or treatment.

There are many forms of adrenal disease-

(This is not an all inclusive list, there are hundreds of adrenal complications)

Adrenal Insufficiency- Disease of the adrenal glands, resulting in the lack of cortisol production. Can also result in lack of DHEA, aldosterone and disrupt the balance of endocrine hormones, electrolyte balances and blood sugar levels.

Primary Addison’s disease- Autoimmune disease resulting in the
destruction of the adrenal glands, rendering them unable to
produce proper amounts of cortisol, DHEA & Aldosterone.

Secondary Adrenal Insufficiency- When the pituitary gland does
not produce the hormone ATCH (Adrenocorticotropic hormone)
resulting in the lack of cortisol production in the adrenal glands.

Tertiary Adrenal Insufficiency- When the hypothalamus fails to
release CRH (corticotropin-releasing hormone) which stimulates the
production of ACTH by the pituitary gland.

Congenital adrenal hyperplasia (CAH)- Genetic disorder present from birth that impairs the adrenal glands. CAH patients lack the enzymes the adrenal glands use to produce hormones that help regulate metabolism, the immune system, blood pressure and other essential functions.

Cushing’s Disease- A rare condition that is the result of too much cortisol production in the body. One source of Cushings is when the adrenal glands have a tumor; making too much cortisol. Another cause of Cushing’s syndrome is when the body makes too much of the hormone ACTH; which causes the adrenal glands to make cortisol.

Possible Symptoms of Adrenal Insufficiency-

(Note- This disease is sometimes referred to as “Syndrome X” because it presents different in everyone. The following symptoms are possible ailments that may be present in adrenal disease but are not all inclusive.)

Pain in the abdomen or muscles or joints, dehydration, dizziness, fainting, fatigue, lightheadedness, loss of appetite, low blood pressure, low blood sugar, water-electrolyte imbalance, or sweating, nausea or vomiting, craving salty foods, darkening of the skin, excess urination, muscle weakness, reduced sex drive, or weight loss.

If you are craving sea salt or salty foods, PLEASE get tested. That is one of the most prominent signs of adrenal disease.

The primary diagnostic tests that endocrinologists use to diagnose adrenal disease:

ACTH stimulation test- Measures how well the adrenal glands respond to the release of the adrenocorticotropic hormone (ACTH). When this test is done, blood is drawn prior to injection of ACTH, then at 30 minute intervals for a few hours to test your adrenal response to the ACTH. If your cortisol levels do not rise properly, you are then diagnosed with adrenal insufficiency.

Dexamethasone Suppression Test- Tests adrenal gland function by measuring how cortisol levels change in response to the steroid dexamethasone. This test has historically been used to diagnose depression as well.

8am Cortisol Blood Draw- Your body’s natural cortisol levels should be the highest in the morning, according to your body’s circadian rhythm. If your AM levels are low, it indicates an adrenal issue.

(Saliva and urine tests are also performed, but are not as widely accepted for diagnostic criteria)

Alternative Test- An insulin tolerance test (ITT) is a medical diagnostic procedure during which insulin is injected into a patient’s vein, after which blood glucose is measured at regular intervals. This procedure is performed to assess pituitary function and adrenal function.

Important Warnings-

Use caution if you begin steroids before you have had an ACTH stimulation test. You will forever battle for the right diagnosis with an endocrinologist if you do. Steroids can cause adrenal suppression and if you do not get tested BEFORE your steroid use it can be assumed you have adrenal insufficiency due to steriod supression, even if that was not the reason you developed adrenal failure.

Do yourself a favor and get tested and discover your body’s natural adrenal function.

This is in no way suggesting someone in adrenal crisis should be withheld from steroid treatment.

This is simply stating that proper testing should be done before a long term steroid regiment is started.

Steroids are life saving medications for those with adrenal insufficiency, but they do come with side effects. (Such as- Weight gain, stretch marks, cataracts, glaucoma, easy bruising, acne, increased appetite, increased growth of body hair)

They are not medicines that you want to start on a whim.

Steroids CAN cause adrenal suppression. DO NOT get on them unless your doctor is SURE you need them.

(Acute uses of steroids are common for infections and asthma, this is not what I am talking about. Long term or repeated use DOES come with risks. Please be advised and ALWAYS consult your doctor regarding your medication use)

An adrenal crisis will lead to death if left untreated. If you suspect you are having adrenal issues, please request the following-

Tests-

ACTH Stim Test

or

Dexamethasone Suppression Test

Blood Tests-

Aldosterone, DHEA, Cortisol and Renin levels.

To read more about adrenal disease visit the following links-

Understanding Adrenal Disease

The Care and Keeping of Adrenal Disease

Video- How to easily explain Adrenal Disease
This post is not intended to diagnose or treat any medical condition. Consult your health care provider before starting or stopping any medical treatment. I am NOT a doctor, nor do I claim to be. I am simply an adrenal insufficient woman who has done much research to understand adrenal disease and seeks to help others understand as well.