Recently diagnosed with Addison's
Posted , 6 users are following.
Good morning I was recently diagnosed with Addison's disease.
It took about 6 months lost 60 lbs mostly muscle finally went into the ER on October 14th and that's where they diagnosed me. I started getting lots and lots of compliments on my tan even though I didn't go out in the sun so much.They started me on hydrocortisone 30 mg and after a few days they sent me home. We can have later started having very bad pain in my stomach came back into the ER found out I had an infection being treated well also was put on another medicine called fludrocortisone acetate. It seems that that's the medicine that I need to keep my blood pressure elevated higher. My biggest question is how do I learn to deal with Addison's disease when to know when my body is under stress. Does anyone have an idea of the best diet regimen for Addison's disease. Even though I was eating a healthy diet I keep losing weight and the doctors don't understand why. I was fired from my job for performance but I didn't know I was so sick and confused. Everyone says that you can live a normal life Addison's and I believe that. I guess once I get my medicine regulated and get a specific diet regimen delete any kind of stress in my life I should be okay. It's a very scary time and there's no one around here that has been diagnosed with it and nobody knows how to treat it. Hopefully I'll leave the hospital today. What's the best way to build up your strength? Does anyone know how Hydrocortisone and fludrocortisone works together and is that m my only option? What is the best diet regimen and exercise? How do you know when you need more hydrocortisone? Is there anything that I should let the medical staff now that I don't know already? I'm open for any and all suggestions to learn how to live with Addison's disease. Thank you
0 likes, 11 replies
rachel_36939 Bongiovanni17
Posted
I don’t know much about Addison’s disease but I do know my 93 year old grandad has had it all his life and had loved a super healthy fit and wonderful life and isn’t still here at 93! So please don’t worry xxx
patlon Bongiovanni17
Posted
Hi
Well, I have had Addison's for 25 years and have just come back from two trips climbing mountains. It is not like Diabetes where, perhaps, you might expect to adjust your Hydrocortisone depending on your activities. There is no particular diet. However, I do measure my blood pressure every day, which I 'smooth' out on my spreadsheet and make my own decisions regarding if and when to adjust the amount of Fludrocortisone. Initially, I was on 100 microgrammes but, generally, these days, I am on 50. It is you choice, but I endeavour to keep my 'smoothed'/average blood pressure between 115 and 125.
The main issue with Addison's is if you get a bad virus, rather than a mild cold. If so, you don't generate the 'hydrocortisone' (the quotes because it is synthetic) to fight it and you might end up in hospital. After a recent belated discussion with my endocrinologist, I now carry and syringe around with me to inject 100 mgs of Hydrocortisone if I have a trauma. Were it a bad virus, this would only be a 'holding' strategy, one would still need to call an ambulance. Last time I had a bad virus, last February, I ended up having 600 mgs of Hydrocortisone intravenously of a 24 hour period in hospital. The reason for carrying it around with you is in case one has an accident whilst out and about, accidents being 'traumatic'.
Pat L
Bongiovanni17 patlon
Posted
Oh my goodness thank you so much for responding. In the fortunately here they don't have anything that I can carry around that has hydrocortisone however I'm going to check in with some otherdoctors that might be able to see what they can do maybe an epi-pen with hydrocortisone in it or something like that.
Bongiovanni17 patlon
Posted
They were only giving me hydrocortisone and when I mentioned the fludrocortisone they starting to get it to me my blood pressure usually is around at 100 / 60 hopefully the food will cortisone will help balance that out better. You're great inspiration and thank you so much my husband and I love to travel and we were concerned about these things.
Roddy999 Bongiovanni17
Posted
There isn't really any special diet you need to follow apart from the usual advice to eat healthy "slow food". What you've got is not a diet thing. The medications you are getting are synthetic hormones to replace the natural ones that your adrenal glands used to make. From here on in, things are going to get better.
Your top priority now is to make contact with the national Addison's Society where you live. They have a stack of resources and experience to tell you what to expect (and better still what not to expect).
You need to get yourself a medical ID tag (dog-tag or bracelet) that says what you've got, in case you collapse in the street: give the ER/A&E team a head start!
I carry an injection kit when I'm going to be somewhere more than half an hour from an A&E hospital (= an hour round trip for the ambulance) or in an aeroplane, otherwise just some hydrocortisone tablets.
You need to brief your family on what to expect [AS info again] and not to go to pieces because fact is that you will have an adrenal crisis on average once per thousand days. You may need them to inject you and/or talk sense to the paramedic [the AS will give you a script of what they need to say].
Rener Bongiovanni17
Posted
They say I have Addison's too but I'm a bit skeptical. Find a good Endocrinologist! People with Addison's seem to have a hard time explaining things to Doctors. Our symptoms are so vague that it appears we are hypochondriacs! Lol! True! Watch Your electrolytes. I get really low sodium and high potassium! I was also fired because I was walking around confused. I had told them if this happens get me to hospital asap. They still just assumed I was high because I take pain medication! Well by that night I was in ICU from septic pnuemonia! I almost died and never got job back! Long story about pnuemonia but on gabapentin and it started casing chronic infections. There are a lot of good websites on Addison's. First step find a Doctor who specializes in Addison's! My Primary tried and did a really bad job! Good luck and will pray for you
Bongiovanni17 Rener
Posted
I was just in the hospital the first time they only gave me hydrocodone and it would not balance out my potassium and sodium levels. So after a long lengthy research of my own I realize that the medicine that I really needed to be on as well as the hydrocortisone was fludrocortisone and that balanced out my potassium and sodium levels perfectly. The doctor in the hospital could not believe it. So I'm currently on 100 mg of fludrocortisone and 50 mg hydrocortisone and it seems like it is working. I lost my job and we'll I was also so confused could not seen too get my words right. Hope this helps helps you. Regina Bongiovanni
sierra03643 Rener
Posted
Rener, you are very confused about Addison's Disease. Most of the things that you say make absolutely no sense. Let me see if I can help you. First of all Addison's Disease is so rare that most doctors do not even have it on their radar at all. They just do not think about it. The ones that do know of it know very little about it. Patient's with Addison's Disease are a big liability for doctors so doctors will either ignore them, belittle them by saying that it's in your head or they will just not want to take your case. Your Addison's Disease complicates every medical problem that you have or ever will have and it is very, very, deadly if not treated properly. Doctor's like to feel successful. Patient's who have Addison's Disease are constantly up and down all the time. It is frustrating to doctors and Addison's Disease creates so many symptoms that it is difficult for doctors to know where to start to help you. As far as doctor's thinking that you are crazy that's just part of what you have to deal with while having this disease. Doctor's do not understand patients with Addison's disease and they do not know how to recognize the symptoms of it unless you are on your death bed and not getting better. You have to listen to what your body is telling you and be your own advocate. As far as being confused and disoriented those are symptoms of your Addison's Disease. Those symptoms are symptoms that your blood sugar is getting low (hypoglycemia) and your blood pressure is getting low. You need to take more steroids immediately and take glucose followed up by protein or you can have a seizure, go unconscious and die. ( An Acute Adrenal Crisis) You need to be on at least 20 mg of hydrocortisone per day and at least .1mg of Fludrocortisone. You also need fast acting a Hydrocortisone tablet for an emergency. You need to keep the injectable Solu-Cortef, 100 mg, in case you have an Acute Adrenal Crisis or if you get into a car accident or get injured. The fludrocortisone (Florinef) should balance out your sodium and potassium levels, although you may still need some electrolytes to balance your glucose levels as well as needing more salt. You need to drink at least 48 ounces of water per day and stay on a high protein, low carbohydrate diet. You need to be eating 6 small meals per day and get plenty of low impact exercise.If your potassium is still high after being on Florinef there is probably another reason for it. Florinef should not cause your potassium to get too high. Get help immediately! Go to the emergency room NOW. Having high potassium levels in your body can cause life-threatening cardiac problems. People who have Addison's Disease normally have a compromised immune system but the steroids used to treat your Addison's Disease can also cause your immune system to be compromised. If you feel like you may have an infection get help immediately. Infections for people with Addison's Disease can be deadly and it could take you as much as 5 times more time to heal than a normal person. If you have an infection you will need more steroids. Why are you on pain medicine? Based on the fact that you are on Gabapentin tells me that you are having nerve pain. You need to see a pain management doctor if you have chronic pain. You need a doctor who is an advocate in treating your pain so that you do not get disrespected when other people or doctors see that you are on pain medicine. I do not know where you live but University of Maryland Midtowne Campus has one of the best Endocrinology departments in the world. There is a good doctor there. Her name is Dr. Margery Pennant. Fly in, drive in to see her. She will help you and she can refer you to a great endocrinologist in your area for on going care. As far as your job goes, go to the Social Security Administration and file for disability. People who have Addison's Disease usually qualify right away. It will depend on your work history and/or how much money that your husband makes, provided that you are married. Try to find a Work At Home position somewhere that is a low stress job that you can perform on your own schedule. You will have good days and bad days. Sometimes you may have bad weeks that can last for a couple months. Trust your instincts and do not let anyone put you on too much medicine. Medicine puts a huge amount of stress on your body. If you have Addison's Disease you will probably have hypothyroidism at some point. Having Hypothyroidism can cause problems with your metabolism so your medication can be metabolized at different rates. You may find that you go into withdrawal from a drug before your next dose. In order to be successful when you have Addison's Disease you have to listen to what your body is telling you and respond to your body as soon as possible. Drugs can cause your senses to be compromised so do not let anyone put you on medicine unless you have a diagnosis that you believe is correct. Keep your life simple and stay away from people and things that rob you of your energy. Keep only people in your life who believe in you and people who are positive. God Bless!
sierra03643 Bongiovanni17
Posted
Bongiovanni17, you are very confused about what you are saying but that is no surprise. Addison's Disease is a very difficult and confusing disease. Most people do not get diagnosed with it in a hospital. You need to find yourself the best endocrinologist that your state has to offer and get retested. You need to get all of your hormone levels checked. You need to be tested for Hypothyroidism and Hypoglycemia/Diabetes. You need to have your salt and potassium levels checked. You need to have all of your sex hormones tested. You need to make a list of all of your symptoms and get it to your doctor and to me. I can give you some direction about what symptoms are coming from where. The fact that they put you on both hydrocortisone and fludrocortisone means that you have primary Addison's Disease (Adrenal Failure). You need to research it extensively. Addison's Disease can kill you, make no mistake about that. You are not on 100 mg of Fludrocortisone or you would be dead. You probably mean 100 micrograms not milligrams, or .1 milligrams (mg) As far as being on 50 mg of hydrocortisone that dosage is probably wrong also. You may have been put on that dosage initially, when you were in the hospital but you should not be on that dosage daily when you are not fighting extreme physical stress. It is too high and it can cause your immune system to be seriously compromised as well as setting you up for osteoporosis. You should not be taking more than 20-30 milligrams,mg, of it per day. You are very confused and it is probably due to your Addison's Disease or the medication that you are on. You need to make sure that your blood sugar is not getting too low. Eat high protein/low carbohydrate food, and 6 small meals a day. You need to be doing low impact exercise, 20 minutes, 3 to 4 times per week. You need to keep an eye on your blood pressure. If you are dizzy, spaced out, confused, can't concentrate or articulate it is either because of your blood sugar or blood pressure is getting too low or because of the medicine that you are on.(not the steroids) Hydrate yourself by drinking at least 48 ounces of water per day with some salt and glucose,(electrolytes) not sugar, in it. Keep your water bottle with you at all times. If you are having these symptoms than you probably need more rescue hydrocortisone. It is very important that you understand the difference. You need to be on your daily dose of 20-30 mg of hydrocortisone and .1 mg of fludrocortisone, and a fast acting, sublingual form of hydrocortisone and fludrocortisone made by a compounding pharmacy, for additional stress and the injectable Solu-Cortef, 100 mg) for extreme emergencies. As far as your job goes being out sick too much which is what Addison's Disease does can cause you to loose your job. Go to the Social Security Administration and file for disability. Most patients with Addison's Disease get it right away. Listen to your body, do not take too much medicine and simplify your life. Stay away from people and things that rob you of your energy. I have Autoimmune PolyEndocrine Syndrome. It has cause Addison's Disease, severe hypoglycemia, hypothyroidism, hypopinealism, problems with my gut and Painful Bladder Syndrome (Interstitial Cystitis), fibromyalgia, allergies amoungst others. I have had 41 surgeries. All of this is related to the Addison's Disease. I was born with it but it only got diagnosed 8 years ago when I was 45. I gained 91 lbs because of it which I have since lost. I had no one to help me. I have had over 50,000 seizures from it. I should be dead! I am very smart and because of it I have figured this disease ( Addison's Disease) out. I do believe that I am one of the world authorities on this disease. I hope that some of the things that I wrote in this discussion forum have helped people out. Take this disease very, very seriously. You will be fighting for your life, aggressively, everyday for the rest of your life. Keep fighting. It is possible to have a great life in spite of it!
Prettylilly Bongiovanni17
Posted
Hello Regina. I am sorry to hear of the difficult time you have had but glad you were diagnosed and are on medication. I was diagnosed in August with Secondary Adrenal Insufficiency which just means my pituitary gland in my head is not telling my adrenal glands to give out cortisol when I need it....because of this I had all the weight loss, pain, fatigue, nausea and brain for without the suntan symptom. Usually Secondary Adrenal Insufficiency doesn't affect your salts but one of my major symptoms is low blood pressure. I am on .2mg of fludrocortisone daily and 24mg of hydrocortisone daily. I split my dose of hydrocortisone into 4. Because I work so early (and you need your first dose as soon as you get up ) I take 10mg at 3am, 5mg at 7am, 5mg at 11 am and 4mg at 3pm. I go to bed at 7pm. This split has helped me not to have too many dips in the amount of cortisol in my body . I used to have 10mg at 3am and another 10mg at 1pm. I would get headaches and brain fog around 10.30am. And without the 4mg at 3pm I would have a headache and depression around 6pm and not sleep well. Everyone is different and has different for circumstances. I am a 47 yr old female and my work involves a lot of walking and some repetitive hand work with packing small things. I also have to have extra salt with my food and put some in my water because it helps my body hold the water. Himalayan Salt is good for it's extra minerals. I have at least 34 litres a day. There are sick day rules for taking extra hydrocortisone which your Endocrinologist should have told you. If you are sick with a fever you triple your dose for three days and then as long as you are on the mend reduce your dose over three days to your usual maintenance dose. You need extra hydrocortisone in times of stress for example a car accident or death in the family. Look up anyhthing to do with Addison's on the internet especially sick day rules . There is so much information to educate yourself with. Make sure you eat well. Some protein with a complex carb of some sort and vegetables regularly. Processed sugars are not good as they'll make you crash because they are used up quickly. Very important that if you ever have a gastrointestinal bug and are vomiting more than once in an hour (therefore you can't get your necessary hydrocortisone into your system) or bad continuous diarrhea you must get to a hospital for an Emergency injection of hydrocortisone and extra iv fluids. Good luck. You'll do just fine if you stay aware of how you are feeling and learn as much as you can about this disease.
Prettylilly Bongiovanni17
Posted
Please take note that I only have at least 4 litres of water a day NOT 34. Bad typo.😶