How it all began, my story about how I learned I have Secondary hyperparathyroidism (SHPT)

1. Let me begin my journey of being very, very sick for a very, very long time. I have to tell you right off that I was once Morbidly Obese, which means that your body fat is so high, mine was 45 I believe, and my health was terrible. I am a diabetic, type 2, and I had severe high blood pressure as well many other severe health issues back then. This was in 2002. I was going to an Endocrinologist for my out of control diabetes and he told me I had to lose 150 pounds or I was not going to live much longer. I was only 55 at the time and had just had my first grandchild and I would have done anything in the world to get better so when this doctor suggested gastric bypass to help me lose weight I didn't think about very much, just found a surgeon, set it up and had it done. I didn't think what might happen 15 years down the road, nor did the doctors even know then what would happen. This is the type of bypass I had. In a Roux-en-Y gastric bypass , only a small part of the stomach is used to create a new stomach pouch, roughly the size of an egg. The smaller stomach is connected directly to the middle portion of the small intestine (jejunum), bypassing the rest of the stomach and the upper portion of the small intestine (duodenum) Within a year I lost over 150 pounds and life was great!!! I was very active again, got off all my medications, just got a new life actually. I celebrate August 7, 2002 and my Rebirth date, the day of my surgery. I did things I have never done in my life or thought I would ever do. Life was good. Then about three years ago I begin to put  weight back on, felt really bad all the time, fatigued all the time, blood pressure went back up and I began to have really bad pain in my stomach. I started going to doctors to find out what was wrong with me. I was finally told that I had gallstones in my bile duct. I had had my gallbladder taken out in 1997 so  I had no idea you could have gallstones in your bile duct. A doctor I was seeing then said he was trying to get me in at UAB for surgery to get them out because that was the only place that could do it. You have to have two surgeons to do surgery involving your stomach after bypass surgery,  one to go around it, one to actually remove the stones. During this surgery they clipped my bile duct and I bled internally for 24 hours before they decided to go back in and see what was wrong with me. I had collapsed when they were getting me ready to leave the hospital the morning after the surgery in the most pain I could ever remember having but they didn't know why until they went back in. My story at UAB is another whole story that is too long to go into on this post but it was the beginning of me being critically sick. I was in ICU twice, sent home with Staph and Mersa infections. I just never got over that surgery. I begin to lose weight rapidly. I lost about 35 or 40 pounds, got very malnourished and was in & out of the hospital for dehydration and malnourishment. I began seeing new doctors in Pensacola, Fl. They could find nothing wrong with me. By this time I was so weak, in so much pain, depressed, chronically fatigued, not just the" need to take a nap" fatigue, I mean fatigue so badly I could barely do anything anymore. Then my PCP sent me to get iron infusions for my severe animia,  but he also started me on TPN, Total parenteral nutrition. Total parenteral nutrition: Intravenous feeding that provides patients with all the fluid and the essential nutrients they need when they are unable to feed themselves by mouth. Abbreviated TPN. He wanted to feed me using TPN to try to build me back up. So  during the TPN he also sent me to get Iron Infusions because of extreme anemia. I was supposed to begin feeling like a new person with all this, my energy and strength was supposed to go up, I was just expecting to be well with the iron infustions. Again,something went wrong. My phosphorus level dropped down to .8 and  normal is between 3-4. I was so low on phosphorus it was dangerous. I began having trouble breathing, it just felt like something was in my chest squeezing be so bad I couldn't breath plus I was in so much pain in my chest, legs, back, just everywhere. Then the fatigue I had already had got even worse, if you can imagine that. I was totally bedridden by that time except on rare occasion I would dress and try to go to church but usually ended up having to leave because I just felt so weak like I would pass out. My dear sweet husband got so worried he started going online putting in my phosphorus, calcium and vitamin D levels in a search for symptoms of deficiency of those three things,  because all three were extremely low. My PCP doctor was trying his best to help me but he had no idea either until my husband came upon Dr. Norman's Parathyroid Clinic website and then the puzzle pieces started to fall in place. All the things I was going through and had been going through just came together finally. We took a graph of my blood work, which I always keep copies of because home health draws my blood every week, and we took it to my PCP  and showed it to him and the light went on for him. Parathyroidism  is what we finally knew that I had and why I continued to get so sick. You have four parathyroid glands behind your thyroid in your neck. They control the hormones that release calcium into your body to keep it working correctly. When something goes wrong the parathyroid glands begin to go crazy and overwork which causes many, many problems in your body which leads to death if not finally caught and treated. Unfortunately for me I had Secondary Hyper paryathyroidism which is only caused by a secondary problem in your body like severe kidney problems, alcoholism, or in my case it was caused by gastric bypass. Sadly, now 14 years after gastric bypass I find out that it is not IF you will Secondary hyerathyroidism, but WHEN. We get it because of the malabsorption  problems we have in our bodies due to us not being able to absorb foods that are put into our bodies, or anything else really, such as medications, vitamins, etc.  I just found out this past Thursday, March 3, 2016 finally after all this time, what is making my body so sick and weak. Sadly with SHT disease you don't usually have tumors on your parathyroid glands, as people who have just Primary Hyperparathyroidism do,  and those tumors can be surgically removed and you will be well, so now I am being referred to an Endocrinologist to find out what treatment there is for my SHT. This disease can kill you if left misdiagnosed for years so my mission now is to become and advocate or spokeswoman for this disease and post all my health issues I have gone through to hopefully reach people out there, like me, who have been sick for years yet doctors keep telling them they can't find anything wrong with you. I had that happen to me, so many times I would leave the doctors office in tears, telling my husband that I AM sick, I DO have severe pain in my stomach and many other places and I am sick and tired of doctors acting like God and telling me I am just imaging all my symptoms or making them up. It causes problems not only in you but with your family, in my case my husband, who has been my long term care giver now for three years. He's done so many medical procedures on me such as giving me antibiotics through a picc line, which I had for three months for a long term UTI, which now we know is from the  SHT disease. You can lose your kidney's from it because too much calcium passes through your kidneys. So today is my first actual day to try to blog and I apologize for this LONG post but it is very important that anybody reading this to understand all the things you go through with this disease and the havoc it can reek on your body and your family that has to go through it all with you. I know at times even my husband who loves me more than life would sometimes doubt if I was really sick or was I just making it all up. It's hard. When you know you have a specific disease, such as cancer or other long term diseases then people understand what is wrong with you but when you go through all I've been through and don't know what is wrong, don't have a disease to tell them you have, people just quit worrying about you and they begin to wonder if it's not all in your head. You also began to wonder if it's all in your head but you KNOW it isn't. I feel vindicated at last, I finally can explain why I'm so sick but not many people will understand it anyway or how serious it is but now I have hope where there was no hope. I will post daily when I feel like it to tell you what's going on in my body each day or developments in my treatment. Right now, I'm in a holding pattern, waiting to get into the specialist in Montgomery who I believe will know how to treat me and I will slowly start to live my life again. One other thing, when you are sick, really sick and you do make the effort to go out anywhere in public, if you take the time to dress, put on makeup, do your hair, etc. people look at you and say "you surely don't look sick". You can't always see what a person is going through so don't be so critical of someone who tries to not let their looks go just because they are sick. I've always been the fru fru kind of girl (woman) who wouldn't even go to the grocery store without hair and makeup done so I'm still that way. Even when I'm in the hospital, if I can raise my head I get my husband to bring me makeup and help me do something to my hair. My hair has gotten very thin due to the SHT but it's long and I love it long, it's so much easier to care for to me, but while I was in UAB so very sick my hair got all matted and tangled up and looked absolutely horrible and a nurse told my husband to just cut it off, it would grow back. Thankfully my husband knew how much I love my hair, how much time I put into taking care of my hair and he refused to let them cut it off. Bless his heart he walked all over Birmingham, downtown, looking for a drug store to buy something to help untangle my hair and he found something and patiently took hours to comb out all the ratted up tangled mess of hair and today  I'm so thankful for it, my hair is still long but it doesn't grow anymore due to the hormone imbalance so I found a solution. I bought a Halotte Halo Flip In hair extension that is hand made and custom blended to exactly match my hair and it's the same length as my hair, all it does is add thickness to my hair to cover up the thinness of my hair and I just love it. It's so easy to put in and take off and you just pull your own hair over it and blend it in and nobody ever knows you are wearing one. Not that I care though. I get so many compliments on my hair all the time and I just say thank you and go on, lol. So  if you are reading this and know me, see me often, go to church with me, etc. you now know the reason my hair always looks so good!!!! I have been told more times than I can remember that they don't understand how I can keep my hair so pretty and so well groomed during all this sickness. I say that if your hair makes you feel good about yourself, it's something you care about, then do whatever you need to to help it look the way it used to be. I can hook you up if you're interested in the flip I wear. My stylist here where I live didn't even know I had one until I wore it to get my hair cut & styled after I got it, and she was amazed to see it. She actually is selling them in her shop but not like mine and hers cost way more than mine. My is human hair, custom blended and comes from England from the nicest lady you'd ever want to meet. I found her company on Etsy after trying several others that were not human hair and looked horrible and   talked to her a good bit before deciding to try one from her. She told me to take a picture of my hair, out in the sunshine, so she could see what colors to use and she immediately told me I needed strawberry & light blonde blended in and she was 100% right. I never leave  home with out my halo!!! I apologize this post is so long but this is the only time (maybe???) that I will post this much at one time. I just wanted you all to understand my story so you can see if what we've learned the hard way might be helpful to you. Please contact me through email or FB if you are interested in talking to me privately about your medical condition. I am not a doctor, nor is my husband, but we can tell you first hand what it is like to struggle year after year with being so sick and not getting any answers. Thanks for reading my blog and I hope you will follow my journey as I now begin to heal and be the vibrant person I have always been. I am 67 years old in years but before my sickness I felt and acted more like a 20 year old and I want that again. Let's take this journey together!!!