	AllExperts > Rare Diseases
	Search

About Tina Budde
Expertise
I can help on all aspects of the condition, treatment, support. I cannot diagnose but only give my personal expertise, and refer you to others who can help. I am in touch with doctors, therapists, and professionals on a regular basis. I can help with disability issues pertaining to lymphedema or cancer.

Experience
15 year cancer survivor, Lymphland International Lymphedema Online (LILO)Support group owner, Owner of Lymphland.com website, former writer for Butterfly Gazette, content Editor for ELymphNotes online lymphedema magazine, patient and advocate for 16 years, Yahoo answers advanced level answerer.

Organizations
Lymphland Support Group Owner, Lymphland.com website owner, American Society of Lymphology member, ELymphNotes forums coordinator and writer, member of many online support groups. Rainbow Bridge Pet Loss Grief Counselor, former bank loan rep, pharmacy ass't

Publications
ELymphNotes Lymphedema Magazine, Butterfly Gazette, many other health oriented websites and newspapers.

Education/Credentials
college graduate, volunteer in pet loss grief counselling.

Awards and Honors
Yahoo groups best of health and wellness 2007 award, World's best 2008 nominee, HonCode acceptance.

You are here: Experts > Health/Fitness > Rare/Orphan Diseases > Rare Diseases > Addison's Disease

Rare Diseases - Addison's Disease

Expert: Tina Budde - 10/29/2009

Question
Hi, I was diagnosed with addison's disease at the age of 16 (12 years ago)vasovagal syncope 2 years ago, polysystic ovarian syndrome @ 16 and a spinal fusion @ 10 and since then, I continue to feel horrible. I am currently on hydrocortisone 15 mg in the am 10 in the afternoon and fludrocortisone .2 mg twice daily, my basic problem is I am always tired, I have a terrible time getting out of bed and reading online most people can live normal lives, work and have families. I basically cannot. I have a terrible work history from trying to work and failing, I have a 5 year old daughter that my mom takes care of because I am not stable enough. I have tried prednisone in the past and it was the same thing. I recently had a disiblity hearing in which they had a doctor there, and the doctor basically said that the only way i would be feeling as bad as I have been is if I am not taking my medication properly. Which I am, have alarms set for every dose, and take stress doses when I am ill or stressed. So, basically my question is, Is there something else that I should try? Or any support sites that may help me understand better what is going on? Thank you for your time.

Answer
Hi Nicole,

First off the doctor at the hearing is paid to say exactly what is wanted by the govt to deny you benefits because they don't want to have to pay benefits out.

Addisons as you know is a severe deficiency of hormones, mostly cortisol and epinephrine, these are hormones that give you energy. Addison's is a chronic condition, daily replacement medication can never be stopped. Proper maintenance treatment requires regular visits to a physician for examinations, laboratory tests, and discussions about symptoms, and there are many other conditions that go hand in hand with it that you may have as well

If an underactive thyroid (hypothyroidism) coexists with Addison's disease, this is called Schmidt's syndrome. Other conditions are auto-immune diseases: insulin dependent diabetes mellitus, and insufficiencies of the parathyroid glands, gonads, and vitamin B12 absorption as well as other autom-immune problems such as lupus, fibromyalgia and chronic fatigue syndrome.

The doctors that you see for the disability unfortunately are paid to get you denied as I said above. what you need to do is gather any information you have on any other condition you have in addition to addisons, such as the mental anguish of not being able to care for your daughter, not being able to live life as you should, and your doctors need to support you so you have the right evidence in the disability file. You need to be sure that no other condition is adding to the fatigue so you need to talk to your endocrinologist and be tested on a regular basis. Lupus is hard to rule out out unless you have specific antibody tests and you are in a flare at the time of the test. It can be many years before you have a diagnosis on that. I have suspected lupus, it's not been showing up in blood work but I have all the symptoms so it's listed as suspected unconfirmed lupus.

http://health.groups.yahoo.com/group/Addisons_Disease/

is one online group that you may want to look at, usually support groups are very up to date on the most current treatments on conditions. The owners usually keep in touch with the larger organizations to be sure members know what is happening in the way of research.

Tina

Ask a Question