Junior Member (female)
Join Date: Oct 2009
Re: polyglandular autoimmune / Schmidt's
First, let me say that I feel for you. I know how frustrated you must feel. Schmidt's Sydrome is a very rare disease and because of that most Endocrinologist really have no idea how to treat it properly. They also do not know how failure in these organs effect other organs in the body. Endocrinology is still in it's infancy and it's important that people who have Schmidt's Syndrome make their voices heard. People with Schmidt's Syndrome have a very unique knowledge on how these organs interact with each other and how hormone imbalances effect the rest of the body.
I too, suffer from Schmidt's Syndrome. I have complete adrenal failure, had complete failure in the thyroid and in the pituitary gland and I have severe hypoglycemia. In the last 10 years, in my attempt to get to a correct diagnosis, I almost lost my life 15,000 times over. Ultimately, I had to diagnose myself and then find a doctor who would listen, no easy task since most doctors are deaf. I have had Schmidt's Syndrome all of my life. It only took me 44 years to get diagnosed with it.
I understand your frustration and your anger. I know that if our condition had been diagnosed when you and I were kids the disease could have been easily treated and not have lead to multiple organ failure and Diabetes/Hypoglycemia. I know that it's hard not to harbour that anger when your having bad days. First, you need to turn that anger into a way to help someone else who may be in the early stages of this disease before it destroys other parts of their body. You need to vent your anger by telling your story.
As far as helping you with your current problem, I think that I can help you a lot. The suggestions that I am about to give you are no replacement for advice from your medical doctor and I suggest that you speak with your doctor before doing anything that I may recommend. I am not a doctor and I do not know your medical history. My perspective is from a patient's perspective only.
First, the hydrocortisone that you are on concerns me a bit. I do not know what you are on, what dose you are on, or how it is administered in the body. If I were to guess, I would say that you are probubly on a 25 mg tablet of hydrocortisone. This kind of treatment for Addison's Disease is not the most effective treatment for Addison's Disease. What I would suggest instead is that you go on cortisone. Cortisone is a glucocorticoid which works just as effectively as hydrocortisone. The difference is that you have more control of cortisone. I have a pharmacy who makes me an extended release, sublingual form of cortisone which absorbs in the body within ten minutes. This is very important because when you go into a crisis, I have found, that you need to have medicine in your body, working within 10 to 15 minutes of the onset of the first symptom.(the first symptoms for me are pain in the mouth, blood sugar changes particularly symptoms associated with hypoglycemia because when you do not have enough glucocorticoids in your systems when you need them it will cause your blood sugar to start going down. I also get weakness in the legs and muscle spasms and my bladder becomes hyperactive. I also can get pain in my abdomin, back, pelvis and flank pain especially if I do not get my steroids in time. You need to know that your blood sugar does not have to get low or high to cause an adrenal crisis. The stress that blood sugar changes that happen too fast can cause enough stress which will throw you into an adrenal crisis. On the same subject if you have too much Hydrocortisone/Cortisone in your system it can increase your blood sugar. Too much of this type of steroid can cause hyperactivity in your thyroid, in your pituitary gland, in your pancreas and in your heart.) It is important to you especially if you are having this Diabetes/Hypoglycemia effect that you do not have too much hydrocortisne/cortisone at one time. Too much hydrocortisone/cortisone in your system at once can cause your immune system to crash. This is why it is better to takes these steroids in smaller doses more often. They must be sublingual because they need to work within 10 to 15 minutes of you taking the medicine. You do not have the time for a tablet to disolve and work in your system because by the time a tablet starts working, you could be dead. Doctors do not understand that an adrenal crisis can come on so quickly and it can kill so quickly. They just don't get it. I hope that you keep injectable steroids along with liquid glucose with you at all times so that if you need help from paramedics, they can get these treatments in your system within 10 to 15 minutes of you needing them. I carry Solu-Cortef. I have found that once you are in an adrenal crisis, there is not much that the medical profession can do for you. Giving you steroids after the crisis has begun will reduce the severity of the symptoms but it will not stop the reaction because by then the body has to save itself. The only way to stop an adrenal crisis is to get the steroids in your system within 10 to 15 minutes of the first symptom. When you have the first symptom of a crisis you need to give yourself more steroids, incrementally, not too much at one time because if you do this it can make your body hyperactive, hypersensitive and it can cause your immune system to crash. This is very dangerous to you because you have hypothyroid and if your thyroid becomes too active when your on synthroid it can cause a heart attack. When you are on too much synthroid it can cause a heart attack. The early signs of having too much synthroid in your systems are having to go to the bathroom and pee a lot when your not drinking much, feeling racey, sweating, anxiety, irritability, not sleeping, little or no appetite, you'll be burning through your hydrocortisone and loosing weight. These are also signs of your blood sugar being too high so try to understand what signals that your body is giving you and keep your blood sugar checked often. Stress will cause your thyroid to be more active, regardless of the source and if your thyroid is even a little imbalanced it will cause the absorption rate on your medications to be inconsistant. For these reasons, I do not like Hydrocortisone. Hydrocortisone does not work quickly enough when you need it, it gives you too much medicine at one time, it as well as other drugs will metabolize in the body at different rates depending on your stress and your thyroid and it gives you little control. You don't want to not have a shortage medicine in your body when you need it or too much in your system. I live in Maryland but in your state all you need to do is contact a compounding pharmacy who can make the drug for you. Ask your doctor to take the total quantity of hydrocortisone that you take on a daily basis and divide it up into eight so that you take the drug every three hours. This will help your body have a consistant level of hormone in your system at all times. As you know, just because a drug may say extended release does not mean that it will work for the entire duration that it is prescribed. For this reason, it is better for you to take the drug in smaller doses more often. Taking the drug in smaller doses more often will help eliminate the side effects from steroids plus it is the way that the body would behave if it were functioning normally. Consistancy is key especially when dealing with hormones. When your doctor prescribes this medicine, it will come in capsule form. In order for the medicine to work sublingually you need to open the capsule and put the medicine under your tongue. I believe that they can make hydrocortisone in extended release sublingual form. Make sure that your doctor writes for the extended release form. < edited >
As far as the fludrocortisone that your on, it works the same way. It's better to take a low dose more often. I take .05 mg. every six hours. Again, this drug needs to be in your system within 10 to 15 minutes of the first symptom. Make sure that you can tell a difference between the symptoms of needing more hydrocortisone and needing more florinef. I find that if I need more floinef, I suddenly get very weak, out of breath, my blood pressure drops and I have severe abdominal, back and flank pain. This florinef drug can be made sublingually. It's more difficult and it takes more time but I think that its more effective than the traditional tablet. Call Sam at Professional Arts Pharmacy and he will tell you , your doctor or your pharmacist how it can be made. Make sure that when you switch to sublingual drugs that you monitor your blood pressure, your blood sugar and your synthroid level more carefully until you get used to the medication. These drugs work very quickly so when you start on these sublingual drugs, when your transitioning, you might want to start with doses that are a little bit lower than your normal dose.
The best way to handle your blood sugar problems are to stay away from simple sugar sources. Stay away from process foods because they contain lots of sugar. Use foods that have been touched by humans, the least. Eat a diet full of meats, vegetables(very important),legumes, nuts and fruits. As far as fruits try to stay away or minimize your use of fruits like oranges, grapefruits, grapes and melons because they convert to sugar quickly. Try to stick with fruits that require you to chew a lot because they act like a timed release drug as they don't absorb in the body as fast. Eat lots of uncooked or stightly cooked vegetables again because they absorb in the body slower therefore keeping your blood sugar more stable. Protein is your best friend. Use lots of lean protein sources like fish, chicken, nuts, plain yogurt with fresh fruit in it(very important because the steroids that your on can cause a reduction in your digestive enzymes causing abdominal pain, bloating and diareah. When your deficiant in your digestive enzymes your body will not absorb vitamins from your food well. This can cause a common problem for Schmidt's Syndrome patient's called pernicious anemia otherwise called a vitamin b-12 deficiancy) Make sure you avoid artificial sweeteners as they can cause other problems. If you need to sweeten something use zero calorie sweeteners made from nature like Stevia. Avoid foods with high fructrose corn syrup in it. If you need complex carbohydrates use thick cut oatmeal, whole wheat english muffins or brown rice. Diabetics, my mother was one, still, with all their best efforts still have problems controlling their blood sugar and the reason for this is because their protein to carbohydrate ratio is off. The best way to control this is to take a scoop of Casein( a milk protein that you can find at health food stores) in a about 6 to 8 ounces of water with every meal and before bed. This will drastically help you control your blood sugar. If your blood sugar gets low do not run for orange juice or glucose unless you need sugar within three minutes. The best thing to keep with you is Muscle Milk Light Bars. These bars have a coating on the outside of them that will absorb in your system within 10 minutes. The protein on the inside will keep your blood sugar stable for two hours or more depending on your activity level. Controlling any fluctuation in your blood sugar is critical in your success at preventing an acute adrenal crisis which can lead to your death. Its the stress on your body that fluctuations in your blood sugar can cause which can trip you into an acute adrenal crisis. Your blood sugar does not have to be too high or too low to cause your a life threatening reaction it just has to change in one direction or the other too quickly. I would suggest that you buy the book " You the Owner's Manual" by Dr. Mehmet Oz and Dr. Michael Roizen. You may already know him through Oprah. He has his own show now. Tape it and watch it every day. You'll see me on it eventually. Dr. Oz really knows his stuff so follow his advice one diet and lifestyle. Make sure that you check with your doctor before making changes in your life.
As far as your bladder problem, I'm about to tell you something that will save your life. When you have an adrenal problem especially when it's combined with other endocrine problems, your body produces a lot of toxins. This is why it is important to drink lots of water. These conditions will make your body very acidic, it's called acidosis. When your body is acidic disease can start to manifest itself in any organ of your body. We know that acidity is instrumental in the aquisition of breast cancer. In the rest of your body the acidity flows from one organ to another not spending too much time in any one organ except the bladder. The bladder is your waste storage container. If your urine is acidic for a prolonged period of time that acid will wear down the protein layer of your bladder. The protein layer in your bladder protects your bladder from infection. A breakdown in your bladder can cause infection. It can cause your bladder to bleed and have ulcers. It will cause your bladder to spasm uncontrollably. This is what happened to me. The technical term for this condition is called Interstitial Cystitis. They say that they do not know how it is caused or how to treat it. I know the answer. I believe that people who have it have adrenal imbalances for one reason or another and they are not being treated for it.I had such a severe case of this disease that I wanted to die. I was going to the bathroom every five minutes. It ultimately caused me to be awake for 14 days and put me in the hospital. I suffered immeasurably with it for 8 years. I was about to have my bladder removed until I found a way to treat it. It was completely caused by adrenal failure and allergens i have removed from my life. I no longer suffer from any symptoms of the disease unless I do not have the proper amounts of steroids in my system. For you, drink lots of waterand eat lots of vegetables. Animal protein souces and fruits are acidic. Vegetable are alkaline. Vegetables will prevent your body from becoming too acidic and the add fiber to your diet which will help your gut get rid of toxins. You can check your body's ph by getting pH testing strips at your local health food stores. Doctor's actually use them now.
What we have is a very difficult disease to have. Most doctor's don't know crap about it. We gotta teach them what to do. Despite the fact that Schmidt's Disease is rare, adrenal insufficiencies are not nor are adrenal and hormone imbalances. It's gonna take people like me and you to get rid of the TABOO that is associated with hormone imbalances because everyone is effected by them and they cause dramatic problems in the body. Use your disease to change the world as I am. We have survived this long with a very deadly disease for a reason. Don't think just about how this disease effects you and thank God that you are surviving this terrible disease. In helping other people, you will find resouces to help yourself.
In the mean time here are a few tips. Stay away from allergens, they will make your condition worse. When your under stress, you will become hypersensitive to everything. Be aware of this and eliminate stress before it leads to an adrenal crisis. Pace yourself and take time outs through the day. Have a low stress job or find a way to work from home. Watch out for unnecessary medications. Medications are the #1 thing that will cause stress on the body!!!!!!! Medications will also make your body very acidic. When you are in an adrenal crisis beware because medications that normally may not be problematic for you can become a real problem. When your in an acute adrenal crisis even oxegen that comes out of a can like in hospitals can cause stress. If your in a hospital, keep documents with you telling medical professionals how to treat you. Remember, when you are in an adrenal crisis you should be considered in critical condition until the physical stress passes. If you should be in a hospital for any reason, you make sure that they treat you as if you were in critical condition even if your not in a crisis and your in stable condition. Things can change very quickly with people with adrenal failure. Make sure they keep you isolated from other patients. You must understand that you have an immunosupressive disease. Make the medical profession understand that. They do not see adrenal failure very often and they do not know how to treat if effectively. Understand and make people who treat you understand that people with adrenal failure take three to five times more time to recover than a normal patient. Make sure that any doctor who wants to prescribe medication for you unless its to save your life, checks with your endocrinologist first. Patient's with adrenal failure can't take a lot of medications. DO NOT TAKE ANY STIMULANTS! Wear a medical id bracelet at all times. Surround yourself with love and happiness as much as possible. Do the things that you love as often as you can. Get plenty of rest. Exercise on a daily basis. Exercise helps balance your hormones and it gets rid of toxins plus it makes your strong which will help you deal with the ups and downs of your disease. Believe and have faith in your instincts they will not fail you. Listen to your body and give it what it needs immediately before a crisis can happen. Timing is everything in dealing with this disease even a few minutes late can mean the difference between life and death. It is possible for your adrenal gland to recover if you eliminate adrenal crisis's. Controlling your adrenal gland is the key to your recovery. Since May, my pituitary gland has recovered completely and my thyroid went from failing completely to being almost recovered. You can recover from this and manage the autoimmune part of this disease so that it doesn't redamage your organs. You must first believe that it is possible. Lead a low stress life as your life depends on it.
Remember my suggestions are from a patient's perspective, only. My advice should not be substituted for medical advice from a good doctor. These are suggestions which have worked well for me. I was almost dead and now I am thriving. Stay around only positive people. Use this disease as a reason to live your best life. It can be an opportunity if you allow it to be. God luck and God Bless.
Last edited by hb-mod; 12-01-2009 at 05:20 AM.
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