Looking For Help

That is my biggest problem (no pun intended) is weight gain. The Dexamethasone is very stable with my body, the cortef did not agree with me at all. Ironically the Doctor who diagnosed me believe it or not on my first
visit was Dr. George Moore From Baptist Hospital he took very good care of me, any time I would get the least bit sick, he wanted me at his office.

Almost like he took over my primary care. He also move away to Washington. Anyhow a lot of folks that saw Dr. Blevins are staying with the clinic and seeing Dr. Lakhani who has taken Dr. Blevin’s place. I will go to him if I run into problems with the Veterans Hospital in Nashville, but right now the endo department there has done very well. here is a link to Dr. Blevins/Lakhani office http://www.pituitarycenter.com (615)322-4752

Thank you. I have not heard of these doctors before or the pituitary clinic at Vanderbilt

your welcome, stay in touch

I’m sorry I’d be happy to send it privately. It’s difficult to get endos here too and even when you do most of them aren’t well informed on my conditions. Yes I do take a boat load of supplements. I have to have B1
2 injections because of an autoimmune problem, calcium, multivitamin, DHEA, melatonin, Vit D, Vit C, B complex, fish oil, glucosamine/chondritan, MSM potassium, magnesium and iron…and hormone replacement growth hormone, testosterone, estrogen, levothyroxin, HC, Florinef, …then add my regular
meds…

Renee

One of my biggest problems is I can not find a endo that I like. I live in Michigan in the Detroit area. I have looked and looked. Right now I am treating myself. I have other problems than just Addison’s but I never had these problems till I was diagnosed with Addison’s. I have a heart problem, I have a pace maker, Asthma and that’s about it. It seems like a lot more. I just got a mediport put in because the steriods have destroyed my veins. One of the reasons I have gained weight is from being in the hospital and they give me high doses when I am in there, 200 mg per day. I was in and out of the hospital for a year. At this moment I am fighting a UTI that will not go away. I have tried it all. Thank you for all the info. How many of you lead a full normal life? Does anyone get disability because of having Addison’s? Just wondering!

Thanks,
Toni

I am completely disabled and get disability for this disease. I also have many other diseases from this disease and medications. If you need more info, I have had, and studied this disease for 12 yrs. Feel free to write back or if you want to call let me know.
TTFN

Blessed Be,
Dianna

Hi, Maui,

I have read you E-mail and really I would like to know if people with addison’s can get disability allowance, because I have ask many years ago to my GP and he tall me NOT, not way I could get sickness allowance for addisons, so maybe, now the law change, is also because I can’t not work …Most the time I am really ill, with different health problems…like asthma, osteoporosis, not energy, bad back breathless, migraine, etc.

I really appreciated is you let me know Please!!! because in 2 weeks time I have appointed with my endocrinologist…so I would like to ask.

thank you
yours sincerely
Cecy

Toni

I’m so sorry your Addisons is this bad. We look pretty normal (except for the tan), so people expect us to be normal. I had gastroparesis (paralysis of the gastric region) before I was diagnosed and I threw up everything I ate. In fact, the doctor’s told me I needed psychiatric help because they thought I was anorexic or bulemic. Not true - I loved food too much to toss it back up.

However, I feel addisonians should seek out a good endocrinologist. Family doctors are wonderful but they can’t be expected to know everything and Addisons disease is baffling to even the experts. You don’t mention taking prednisone, but perhaps your doses are too low. I have lots of energy on most days. Some days I crash. You should have more good days than bad ones. If your doctor isn’t helping you feel better, you should look for someone until you find one that helps. I had to go through doctors for years before I found one that really knew his stuff. And I’ve stuck with him and have been happy. Please don’t give up. Keep trying. You’ll get there.

Laurie

Hello everyone, I have been browsing through some of the recent postings and thought that I might be able to add a few tips of my own.

I also have Heavy metal toxicity Mary Ellen. Specifically mercury and I am very sick from it.

I have Primary Addisons, hypothyroidism, female hormone problems, candida and a load of other stuff - ALL because of the mercury toxicity. I was diagnosed with ME 13 years ago and fibro too. I also have Ehlers-Danlos-Syndrome type III (hypermobilty type).

What I am realising is that I may possibly have other issues such as stealth viruses, lyme, biotoxins or whatever, but until I get the mercury out of my body I am never going to get better anyway.

Like many here I have spent so much money on trying to find out how to get better and on supplements etc. I had to diagnose most of these things myself before I ever got any help from Doctors.

I am now following the Andrew Cutler protocol for mercury removal as I firmly believe this is the most safe and scientifically sound protocol there is. (Having done my research of course!) But there are many dangerous protocols out there and I would like to warn those of you here who are also mercury toxic to be very very careful and do your own very thorough research.

Also, I have found, both from personal experience and that of others that Endocrinologists are often not the best Doctors to treat Addisons. Just my opinion and I’m sure there are people who are doing very well under the care of one! But sometimes a very knowledgable Naturopath or Anti-aging (bio-identical hormone using) Doctor may be of more help. I know of so many people who are kept sick by well meaning Endo’s just because they are not on the right dose of HC or Prednisolone or whatever. Lab tests can be very unreliable and as someone else said, all the hormones MUST be balanced at the same time.

This is especially true of the Thyroid which works very very closely with the Adrenals so if one is out of balance so will the other one be. Undiagnosed hypothyroidism or hyperthyroidism for example can have a severe effect on the adrenal glands and is a major stress factor. And Endo’s only diagnose and treat Thyroid disease with lab tests rather than clinical judgement and patient signs and symptoms. (there is good info on this at www.stopthethyroidmadness.com). Many folk are walking around with obvious hypothyroidism and yet they can’t get any treatment because the lab tests say they are fine! Lab tests don’t tell you how your body personally metabolises things and endo’s don’t have any idea what other hormone problems, or toxicities or whatever might be lurking in your body and stressing your adrenals, causing you to need more cortisol than other people.

One other thing - someone was asking about how to get over the morning lows. As our natural cortisol would normally be highest in the morning this is when we need the most. Sometimes it helps to take a little bit of Prednisolone at nightime so that there is still some left in your system when you wake in the morning. But not too much as it may keep you awake.

Alternatively, if it’s a big problem, I would set my alarm to wake me an hour or so before I am due to get up and take the medication then.

I had big problems with hydrocortisone because I metabolise it so quickly. It would wear off within two and a half hours for me! I had to change to prednisolone and even that I have to take three times a day because it wears off quicker than in most people too. But this is a problem probably caused by the mercury affecting my liver metabolism. Some of you may find the same thing happens.

Basically, one size doesn’t fit all and we are all different. Even the dosages of adrenal meds we need to take can vary hugely. Which is why I have to disagree with people who say that the replacement dose should be the same for everyone - it’s just not. It doesn’t matter how big or small you are, it’s about personal metabolism and genes. A Tiny woman may need more than a big man - or vice versa. One person may have many more natural stressors in their life than another person.

Hope this helps someone :slight_smile:

Vanessa

Hi my name is jeff and i have the primary version of addisons. I am currently on 50mg in morning and 5omg in evening of hydrocortiscone. I was diagnosed last friday and i am not feeling all that great. I had a terrible year in my life personally last year and a very stressful job. Currently in a very messy divorce and seem to be suffering big time. Have really no knowledge of how i am supposed to feel, do i get better instantly within a week or will the steroids take months to start working. Used to have so much energy at work but realised i was a bit like a 90 year old recently. I am 31 and 7ft tall in inches (can you imagine the dizzy spells lol).
Just looking for some guidance really. Hi to everyone and its great that some people set these sites up, you guys should be commended for your kind act.

love jeff

HI Jeff,

I hope your Dr. is planning to lower that high dose you are on. usually one can feel the benefits of the hydrocortisone within a few days. That dose is extremely high as most people are on about 25-30 mgs per day taken in at least two doses. I myself take 30 with my first dose in the am 20mgs and then at 5 pm I take 10mgs more. I am 46 years old and weigh 312 lbs. Where are you located as I did not understand your height.

BIGMIKE

Hi Jeff,

Although that is a high dose, your body maybe requiring that much at this point. when I was first dx (1 1/2 years ago) my endo put me on 30 mg a day & sent me home & within 5 days I was hospitalized for 6 days & given solu medrol injections every 4 hours. point is it took my body a while to feel better even after starting Hc. due to other health problems I am still battling daily. some good days some not so good…

hope you have found a good dr. who understands this illness & all the complications that can go with it. best of luck feel better soon.

Dannielle

Jeff,

You and I have something in common in the fact we both developed Addison’s disease at relatively the same age (mine started at 31). I also had a very stressful job at the time when I started gettings sick. I think I have a pretty good idea of what your are going through.

The following is a list of Addison’s websites that I frequent. Your best chance of successfully living with Addison’s disease is to become an expert on it. The disease is very rare and most endocrinologist may have only 1 or 2 Primary Addison’s Disease patiets, if that.

Addison’s Disease Self Help Group - United Kingdom
It has some good information including:
1)Emergency treatment guidelines
2) Surgical guidelines
3) Addison’s disease owner’s manual
http://www.addisons.org.uk

Glen Kardel’s Addison’s, Thyroid, and Diabetes Website
Has a lot of information and some good links to other Addison’s websites. Has a good message board.
http://www.addisons-diabetes.gkznet.com

The Canadian Addison’s Society
Very informative site. Read though all of the past newsletters and you will learn a lot.
http://www.addisonsociety.ca/index.html

The Autoimmune Disease Support Forum by Vbulletin
Message Boards for Addison’s and other autoimmune diseases
http://www.wideberthasmessageboard.com/

CarePlace
Message Board for Addison’s and other disease’s
http://www.careplace.com/group/664

Austrailian Addison’s Society
Very good website. Read through the Medical and Chemist Q&A. Has their newsletters on line. Has good links to other websites
http://www.addisons.org.au/core.htm?page=/content/qa_med.htm

Yahoo Addison’s Disease Message Board
http://www.health.groups.yahoo.com/group/Addisons_Disease/

The ADDISON & CUSHING INTERNATIONAL FEDERATION (ACIF)
Dutch Addison’s Disease Site - There is some good information under “available literature”.
http://www.nvacp.nl/page.php?main=5

Addison’s Disease Research Today
Chronic Adrenal Insuffiency Treatment, Cause & Medications
http://www.addisonsdisease.researchtoday.net/

Addison’s Disease.net by Teleplexus
Information On Addison’s Disease & Other Adrenal Disorders
http://www.teleplexus.com/addisons.html

Addison’s Village Forum
Addison’s Disease support and information - very good message board
http://www.s12.invisionfree.com/apeoplevillage

National Adrenal Disease Foundation (NADF)
http://www.nadf.us/index.htm

New Zealand’s Addison’s Disease Network Website
http://www.addisons.org.nz/

Chad Lansing
Iowa

hi mike just to let you know i am nearly 7 feet tall. I dropped from 19 and a half stone to 16 and a half in nine months. just got my next lot of 100mg. Its not gonna change till i get back to the doc at the hospital.

question?
does anyone else get a massive headache after their hc dose and has anyone else suffered from nightmare back pain when they were diagnosed. Does it stop after a while. Doc is a bit useless. Ps i live in northamptonshire in the uk.

jeffers

Toni,

I’m afraid your original question has gotten lost in the thread.

If your pitutary has atrophied, you must find a pituitary endocrinologist to do a thorough work-up for your pituitary gland. I’m guessing you have other deficiencies which might include your thyroid, growth hormone, testosterone and/or estrogen.

I am hypopituitary and I can tell you that although I was originally just treated for the addison’s I never felt better until all my other hormones were supplimented. It took about a year, but I finally got there.

I live in Indiana, but see an endo in Los Angeles named Dr Ted Friedman. His website has all kinds of great short white papers and one chart that shows the symptoms of the excess or deficiency of all the major hormones. There might be some good info on there that can help. He’s also got a list of recommended docs throughout the world if you need to get a second opinion.

Don’t stop fighting till you’re back to a normal life. I know how hard it is to fight when you’re feeling so poor. Stay strong and do your best to find a really good endo.
:slight_smile: Gina

Yes my main question did get lost. I did not have a question about toxic posion or other things that people have seem to write about. I almost gave up hope that anyone would help me. My pituitary gland has atrophied and is small and concaved. No one has been able to tell me why. I am very short and I have a lot of femal problems. All of the time I do not feel that well however, my doctor does not think what I have is anything to worry about or even slow me down. Last time anyone even checked my cortisol level was over a year ago. I think that is pathetic. I really do not know what to do. The part I am havong trouble with is I have gained so much weight since I was diagnoised and no one has done anything to help me loose it. My Secondary Addison’s is idiopathic. I can not believe how many people with Addison’s do not work and recieve disability. My doctors would not even fill out the forms for me to recieve it. Plus I know I can work. I am very active. I teach school, Ski, dance, go to graduate school. boat and jet ski. I love to read too. Please someone give me some advice on MY PROBLEM.