[stormwarning (OP)]

After many visits to my G.P. for many minor ailments and infections (he said I was a hypochondriac)(One which he said was a little chest infection which turned out to be Cancer)I collapsed and was rushed into hospital, One of the Dr's on duty was a Endo specialist and he recognised my symptoms (my 1st Crisis), then proceeded to pump me full of Cortisone's. I was diagnosed with Primary Addison's Disease. Now through asking a few questions and net searching, I know it is caused through the destruction of the Adrenal Cortex. There is no cure, but I am wondering what might trigger the destruction of the Cortex. I can not get any information on the causes. Any facts or theories out there  [?] []

[Andrew K Fletcher]

Tell me more about your symptoms, time of day that is worst for you, does the weather affect you in any way for example low humidity high humidity. Do you wake up feeling refreshed or feeling worse? do you feel cold in bed, cold feet cold hands? Sweating?

Andrew

[RD]

The most common cause of Addison's is autoimmunity. However you mentioned that you have cancer.
The drugs used to treat cancer, or cancer itself can cause Addision’s disease.
 

When Thomas Addison described the disease that now bears his name [1], bilateral adrenal destruction by tuberculosis was its most common cause. Now tuberculosis accounts for only 7 to 20 percent of cases; autoimmune disease is responsible for 70 to 90 percent, with the remainder being caused by other infectious diseases, replacement by metastatic cancer or lymphoma, adrenal hemorrhage or infarction, or drugs

http://patients.uptodate.com/topic.asp?file=adrenal/7188

Although carcinoma frequently metastasizes to the adrenal,
development of adrenal insufficiency is rare and recognition occurs even less frequently.

http://www3.interscience.wiley.com/cgi-bin/abstract/112666450/ABSTRACT

Addison's is rare, approx 1:100,000
http://www.addisons.org.uk/

[stormwarning (OP)]

 Hi R.D. Thank you for the reply,
 The Oncologist said that the Addisons played a factor in my contracting the Cancer.(I had Addison's before the cancer appeared) Pre Addison's I was super fit, apart from Pregnancy, I never needed to see a Dr. I had never had any illness, apart from general childhood illnesses,  including Scarlet fever.
I have read up on Thos Addison and possible causes of the disease, but none of them seem to fit my profile. The Endo I have seems to have very little time to answer my questions or he just may not know the answers, and seems to fob me off with non commital answers. I know that he is a very busy man and has a very large surgery and his dept is small and very over stretched.
2 of the links that you have mentioned I have never seen before. Thank you.I am going to check these out.

[stormwarning (OP)]

Hi Andrew,
Answer to your Questions
Symptoms vary, but mine include......
Tiredness.... general feeling of constant exhaustion....feeling nauseous..frequent various infections of chest, kidney etc
palpitations....confusion (brain fog)...insomnia (it is 5.30am as I write this).... discolouration of skin (healthy looking tan)constant aches and pains... rheumatoid arthritis....swelling of arms and legs (fluid retention) these are but a few symptoms.
In answer to your other questions
The feeling of being unwell is a constant, there is no specific time of day when it feels worse, but if I did have to put a time on it, it would have to be, shortly before my first lot of medication is due in the morning. yes the weather does have an impact. cold weather plays havoc with joint and mobility, also more prone to colds which nearly always end up with hospitalisation as they progress to pneumonia. Hot weather effects hydration, I dehydrate very quickly, and have had to be put on a saline drip on frequent occasions. Maintaining body temp is weird, I can be hot when everyone else is cold and vica versa, sweating is bad even when body temp is low, (again dehydration) my hands and feet are always hot to touch. B.P is also strange. I have a constant low B.P norm around 85/60 sitting which drops on standing. dizzy spells are a way of life now and you learn never to stand up quickly or you end up in a heap on the floor. lol.
I could write a book on the symptoms, I just wish there was more research and info available on the causes of this disease.
                                             Su

[Andrew K Fletcher]

Thank you for the answers to my questions.

I may have answers for many of the symptoms you describe, Certainly helping you to fight off infection, aches, palpitations, oedema, dizzyness, and may even correct your B.P. or at least markedly improve it.

My work is in how the body functions. Rather than searching for a cure for symptomatic problems, I have looked at how the body behaves when horizontal, partially elevated, standing, sitting etc, which is why I asked the questions to see if there is a link between your symptoms and my own research.

I am pretty certain that you will respond well to some simple modifications to the way you sit and sleep. I know this sounds too simple to be of any use to you, but please do not rule this out as I have seen some pretty amazing results over the many years I have been helping people to recover from illnesses and injuries.

I do not charge for my research or for the information. My interest is in seeing what this research can and can't do for people like you.

On the cancer issue. You may want to look into whether Natural progesterone cream might shrink or arrest it's onset and development. I have seen benign tumours visibly shrink when using this, and it is being used for tumours in the brain and even breast cancer.

I have had some pretty amazing results with Parkinson's and cerebral palsy just by tilting a bed so that the body is inclined rather than flat. The logic behind the bed is that the circulation in the cerbrospinal fluid, main circulatory system, lymphatic system and even the flow in the dermis and epidermis requires the constant pull of gravity to be incline with the vessels of the body.

You can research my work by searching on the web for “Andrew K Fletcher” or “inclined bed therapy”
A video relating to IBT and some experiments can be found here:
http://www.metacafe.com/channels/AndrewKFletcher/

Natural Progesterone not the modified one from the chemists. http://www.thevitalimage.com/pr03.htm

[dkv]

There are psychological aspects as well.
Who is taking care you apart form the medical team?
Do you like to read or watch programmes?
What kind of thoughts or activities make you feel happy or better?
How long you have been suffering from this disease?
Whom do you care about the most?
Do you think there is a need to change habits?
Do you think there is purpose to your Life?
If yes then what is the that purpose?

[Karen W.]

Hi Andrew,
Answer to your Questions
Symptoms vary, but mine include......
Tiredness.... general feeling of constant exhaustion....feeling nauseous..frequent various infections of chest, kidney etc
palpitations....confusion (brain fog)...insomnia (it is 5.30am as I write this).... discolouration of skin (healthy looking tan)constant aches and pains... rheumatoid arthritis....swelling of arms and legs (fluid retention) these are but a few symptoms.
In answer to your other questions
The feeling of being unwell is a constant, there is no specific time of day when it feels worse, but if I did have to put a time on it, it would have to be, shortly before my first lot of medication is due in the morning. yes the weather does have an impact. cold weather plays havoc with joint and mobility, also more prone to colds which nearly always end up with hospitalisation as they progress to pneumonia. Hot weather effects hydration, I dehydrate very quickly, and have had to be put on a saline drip on frequent occasions. Maintaining body temp is weird, I can be hot when everyone else is cold and vica versa, sweating is bad even when body temp is low, (again dehydration) my hands and feet are always hot to touch. B.P is also strange. I have a constant low B.P norm around 85/60 sitting which drops on standing. dizzy spells are a way of life now and you learn never to stand up quickly or you end up in a heap on the floor. lol.
I could write a book on the symptoms, I just wish there was more research and info available on the causes of this disease.
                                             Su

Su

I know you have written these symptoms to Andrew, but I must say so many of your symptoms are the same as mine and we have different diagnosis.. Mine has been going on over a year now and am just now finally getting some answers.

The confusion or fog as you put it is quite irratating . I have forgotten things also which is also annoying. I think I remember them but then when I concentrate to try to recall it just flys out of my head as if it were never there! LOL.. I am laughing but it really is not funny at all and feels awful. I am not sure what my final diagnosis will be yet but we are much closer now. and will no soon.

The dizzy thing is right on. I lie down stand up and Boom nose to the floor .. and bending down for several moments does me in too and I fall. It is weird. I wish you luck and I hope a answer to your questions come.

[RD]

Su, you mention that you have had scarlet fever and have rheumatoid arthritis, (an autoimmune disease).

Scarlet fever can trigger autoimmune inflammatory disease ...

Rheumatic fever is an inflammatory disease which may develop after a Group A streptococcal infection (such as strep throat or scarlet fever) and can involve the heart, joints, skin, and brain.

http://en.wikipedia.org/wiki/Rheumatic_fever

The most common cause of Addison's is autoimmunity.

[There are a few recorded incidences of Addison's and Rheumatoid Arthritis ..
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1006932]
 

[violet4]

I have Addison's as well. The bad news is I have had to learn everything on my own as even Professors of Endocrinology and many other doctors over the years didn't treat my condition properly. If you have low blood pressure (orthostatic hypotension) please look into taking fludrocortisone as well as hydrocortisone. Fludrocortisone will also help you stay hydrated.I almost died when my BP plunged to 30/20, out of the blue one night, before I was taking fludrocortisone. Nausea is almost always a sign I am not taking enough steroids. Body temperature is always a problem like you-too hot or too cold. And it is important to not stress your body PHYSICALLY as much as possible, don't allow yourself to get too hot, too cold, too tired or too hungry. I don't know the cause in my case but I did have rheumatic fever when I was 18. The replacement steroids can only approximate natural hormonal release patterns. When the adrenals function normally, adrenal hormones are released according to moment to moment need. Replacing according to a schedule will never be as good but is the best we can do. Based on my own research over the last 10 years approximately, adrenal failure is much more common than is generally recognised. And many people are ill who still have some, although insufficient, level of adrenal function. I hope some of this is of use to you and good luck.

[stormwarning (OP)]

Hi Violet,
Thank You for the information, It is most helpfull.
I was on fludrocortisone and prendestelone for a long time, they did very little to improve my condition. I have had Primary Addison's for 5 years now and I am still learning about the pest of an illness. In this time I have had over 40 hospitalised crisis events, including 2 resuscitation's during surgeries. Lucky for me I live in the U.K and heat is no problem as we only occasionally have a summer lol.It's controlling my temperature thats a nightmare.  Just before a crisis I am starting to recognise the symptoms, though they can vary. I have muscle and stomach cramps, vomiting, very low B.P. high temp, brain fog etc.. thats when I know to inject the solu-cortef.Some have come on so quick there has been no warning and no time to inject
Like you also, I have found that my Specialists and Endo have very few answers to my questions, It is so frustrating. All they seem to do is write notes and check my bloods and weight.
May I ask but,
Do you ever isolate yourself from others in-case they are carriers of viruses (measles, chickenpox etc), or never travel far from home because of a  crisis coming on so suddenly. I have asked my endo if this is normal behaviour, but as I am the only addisonian on his regester, he has no other patient to compare with.

Thank You again and Best Wishes

 

[stormwarning (OP)]

dkv
In response to your Questions.....
Yes..
No-one..
Yes..
Reading and Eating..
5 yrs approx...
My children and Grandson...
No...
Yes...
To brighten the lives of others and to finish my degree..

[violet4]

Stormwarning you are welcome. You say you have used fludrocortisone and prendestelone, do you mean prednisolone? Also, may I ask what are you taking now and how much? I know what you mean about the crisis coming on quickly. Mine came on so quickly I was holding the solu-cortef in my hand but unable to assemble and inject. Fortunately doctor came very quickly (not in UK !). Is the treatment of Addisons complicated by the cancer? It would seem that it might be with interactions between medications and other considerations. I do try to stay away from people who might be carrying viruses but now that I look after my young grandchildren, it is not really possible and in the winter I tend to have a lot of viral illnesses which they bring home from nursery. Also, I don't like long car journeys or long journeys of any kind even though I always carry extra meds with me, it makes me uneasy. I hope this helps. Good luck

[Karen W.]

Hi R.D. Thank you for the reply,
 The Oncologist said that the Addisons played a factor in my contracting the Cancer.(I had Addison's before the cancer appeared) Pre Addison's I was super fit, apart from Pregnancy, I never needed to see a Dr. I had never had any illness, apart from general childhood illnesses,  including Scarlet fever.
I have read up on Thos Addison and possible causes of the disease, but none of them seem to fit my profile. The Endo I have seems to have very little time to answer my questions or he just may not know the answers, and seems to fob me off with non commital answers. I know that he is a very busy man and has a very large surgery and his dept is small and very over stretched.
2 of the links that you have mentioned I have never seen before. Thank you.I am going to check these out.

Su,

I hope your day is going well.I was just reading this thread again this morning. I to have had scarlet fever as a child and now arthritus also.I believe mine is Osteo not Rheumatoid.. at least thats what I believe they said!

I have in the last 4 weeks been experiencing tons of muscle cramps, legs calves fronts in my back around the tummy area arms neck and sholder blade area also. Have quit taking lipitor and the cramps have calmed down but still have one here and there!

I have virtually all of the same symptoms and have been positively confirmed as having a chronic infection. So am waiting for them to do more tests to tell me what we are dealing with. I did however suffer a TIA, (mini stroke in may of 2007) Thanks for the thread it is very informative.

[stormwarning (OP)]

Hi Violet,
I think that the meds are the same but are most likely to be generic names. I always carry my fluro-cortef solution and injection kit with me at all times and have also had times when i have not had time to prep my injection as  a crisis has come on so quickly, also on occasions as my B.p drops I have gotten pins and needles and cramps/spasms in my hands and have been unable to hold the injection. Do you carry a Addisons Emergency letter with you in-case of sudden illness or accident. This informs Medics etc...of your medications and the treatment required.
I have a young grandson and I am dreading the day he contracts Measles or Chichenpox, as contact with these two childhood illnesses can have very serious consequences to an Addisons sufferer and needs urgent medical attention, plus the worst part is that I won't be able to see him while he is ill.  All the best Su.

ps. I am recovering from pneumonia (again) and at the moment I am on Hydrocortisone 60mg am and 30mg pm. normal dose 1s 30/15. also on other meds for other associated illnesses

[stormwarning (OP)]

Hi Karen,
Of late I have been finding out more and more on Addison's. It is a very insidious disease. It seems to hide behind lots of other illnesses. A lot of the time the treatment seems to be for viral ailments, which does nothing to suppress the effects of the Addison's.
The Add part of Addison's is right, as this is an illness that is continuously adding more problems to the sufferers health, both physical and mental. Ask your Dr for a ACTH stimulation test, which measures your cortisoid levels. Best Wishes

[violet4]

Stormwarning, I am wondering why you do not take fludrocortisone as you have low BP which is an indication that you need it. I do not carry a letter as I am not in a country where it would likely be understood, but everyone around me knows and I keep my fingers crossed and try to get on with life.
Your grandson should be immunised against chicken pox and measles for his own sake and especially for your sake as you are vulnerable. Both of my granchildren have been fully immunised as I am vulnerable too and spend a lot of time looking after them. And you are particularly vulnerable with your other health issues, so if it were me I would make sure he is up to date with all immunisations including hep A and B etc.

Good luck and best wishes for good health.

[gymnast65]

Hello I am new here and I was reading up on Addison's Disease. A year ago, I suffered severe eye pain in my left eye. I called my neurologist and he set me up on a 5 day Solumedrol drip. The IV helped with my eye pain, but, 4 days later, I came down with a severe upper respiratory infection that floored me. I was very ill and had no time to rest because I was an Assistant Coach for my daughter's Cheerleading team and it was the middle of competition season. I began fainting!! The spells lasted only a few minutes, but, I never remembered falling and felt so disoriented afterwards for hours and sometimes a day or two. I lost my voice, the pains in my joints and muscles were beyond painful. I went to the hospital 4 times and then my GP. She discovered that my BP changed with positioning my body. She referred me to cardiology and I was diagnosed with "Vasovagal Syncope" (Cardiogenic). I was put on a Beta blocker for a month and it caused my BP to drop significantly. My Dr. pout me on Fludrocortisone .01mg. After 3 months of taking it, I hadn't fainted, but, had the "aura" effect. At my appointment in October, the Dr. asked me if I tan all year. I said no, I can't go out in the sun. Then he noticed the dark circles under my eyes and got really concerned. He mentioned Addison's Disease. He told me to make an appointment within 6 months to see if any other changes happen.  In the meantime, I cannot get rid of these circles!! I am exhausted all the time, have  barely an appetite, but, I am a personal trainer and have to set a good example for my clients. My joints ache so bad that it exhausts me and I too, workout everyday. I dump salt on my food because I can't taste anything. I am irritable and feel jumpy at times. I would like to now if anyone knows if this sounds familiar to them and if you can give me some information as to what I can do to get a diagnosis please reply in kind..thank you for reading

[RD]

... A year ago, I suffered severe eye pain in my left eye ... I began fainting!! ... I lost my voice, the pains in my joints and muscles were beyond painful ... My joints ache so bad that it exhausts me and I too, workout everyday. I dump salt on my food because I can't taste anything. I am irritable and feel jumpy at times.

Hypothyroidism can cause eye pain, dark circles around eyes, hoarse voice, decreased sense of taste and smell, irritability, low heart rate (which could cause fainting), joint&muscle pain and fatigue.
Hypothyroidism is a treatable hormone deficiency ... https://en.wikipedia.org/wiki/Hypothyroidism

[gymnast65]

I was tested for hypothyroidism and it always comes back negative. I am seeing my PCP in a couple of weeks and I know more labs will be ordered. In the meantime, fatigue is killing me and there isn't any kind of male up that will cover my circles! LOL! Unless I want to look like I plastered my eyes..