Finally got help for my UTI with Ecoli in it, it's a shame you have to wait so long for help!!!! Just another "thing" with my Secondary Hyperparathyroidism

Let me tell you all, I have been in the worst pain of my life I believe for the last few weeks in my pelvic area. I had assumed it might be kidney stones because I've never had them and I knew that you have severe pain in your lower back but  I also know that the ones that I've known that have kidney stones, once they finally pass them the pain is gone. My pain was never gone. I went to ER in Enterprise last Friday because the pain got so bad all I could do was moan and cry. My PCP wasn't in the office, the whole office was closed in fact and my home health nurse, Melissa, told me I should go to the ER. I knew it would be a big headache and it was! I did get some pain medication though in my port and got about 12 hours of relief from the agonizing pain but it came back of course and I was once again moaning and crying and rolling around in the bed begging for help. I had an appointment to see my PCP Monday morning at 9:15, happened to have it already so didn't have to fight to get in this time. I told him the antibiotics his nurse practitioner called in for me on Friday didn't work because I CANNOT take antibiotic pills. They make me deathly sick  and I throw up and have diarrhea, which is exactly what happened. So he called me in IV antibiotics that I take through my port, which is what I needed all the time, plus he  increased my pain medication and wrote it so I can take it every four hours and that has helped so much. I knew that once I got the antibiotic going into me through the port that it would start clearing up the UTI quickly and the pain would began to be more manageable so thankfully all that has fallen into place. I had already realized that I was getting my strength back from my hyperparathyroidism from the new drugs that my new Gastroenterologist. Dr. Vic, gave me plus changing my TPN so I knew that if I could just get some help for the UTI I would began to see the light at the end of the tunnel and I DO!!!! My phosphorus level went up to 2.9 this week. It started out at .9 weeks ago and just wasn't going up very fast at all until the changes in my regimen that the new doctor gave me. Normal phosphorus levels are around 3-4. Mine was 4.3 right before I started getting the iron infusions and then it dropped drastically to .9. That causes extreme weakness, shortness of breath, pain in the chest and all over the body. So, yes, I'm extremely happy that my phosphorus is finally coming back up to normal. I never knew how vital certain things were in your body until all this jumped on me with the hyperparathyroid disease, which I had for a long time but it finally had just gotten to a point that it had caught up with me and I got just drastically sick. So today is a good day for me even though I'm now juggling three things going into my port, I will gladly it since I know now that it is finally going to make me well. WELL, I love the sound of that word! This has been a long, hard journey for me finding out what is wrong with me and how to fix it. I know there are other diseases out there that are just as horrible & I totally understand the frustration people go through going from doctor to doctor trying to find answers to only be told by each new doctor that they can't find anything wrong with you and they pretty much make you feel like it's all in your head or you are making it up just to get sympathy or something. Believe me, I don't want sympathy, I want to be well again and function like I used to. I do know one thing, I will NEVER take my health for granted again. I will enjoy each day to it's fullest, I will never take the ability to just get up out of bed, dress and just go to a store for granted again. Each step I take without a cane or a rollater will be something I never take for granted again. So, all that being said I want to tell you all that I had planned a trip to Pigeon Forge, Tennessee, to the Smoky Mountains, my favorite vacation spot ever, for this week because it's Rachel's spring break and we went last year so I wanted to go again this year but I had been so worried, I mean in a panic because I was only getting worse, not better as the time got closer and closer. I have a friend who owns a home up there, a second home, that she rents out sometimes and I had rented her house in good faith that I would be able to make the trip. My niece from Texas will be joining up because her daughter & son live very close to Pigeon Forge and it is just going to be a big family get together and I was so worried I would not make it but I am!!!!! I'm not as strong as I would like to be, but I am much stronger than I was even a week ago. I was afraid the UTI would keep me in so much pain I just couldn't do the trip but I just could no disappoint my foster daughter, Rachel. She has been planning this trip for a month and is so excited. I am too!!!!! I am packed, ready to go now! I won't be able to do all I would like to do but I will be able to do a lot that I didn't think I would be able to do. I had just hoped to get up there, make it to the bedroom in my friends house and just lay in that bed sick as I've been here but God answers prayers for sure. He answered one for me just this week. So Rachel and I will load up all my necessary medical equipment and as early as we can get up and get going in the morning we will be heading to Pigeon Forge and the Great Smoky Mountains, paradise on earth!!!! Thank you Jesus for answered prayer!!!!  

I just found out that I have E Coli bacteria in my urinary tract, thus the severe back pain. I wonder what else I will get next!

It seems like I just cannot catch a break!!!! I had no a urine sample for home health on Monday and they sent it to my primary care doctor who just called and told me that I now have E Coli in my urinary tract and have to began a 10 day treatment for that! I started reading about it online, thank God for Google, huh????? I had no idea how I got E Coli. While reading I realized that is the reason for the intense pain in my lower back, pelvic area and I thought I was passing small kidney stones all this time. I have pain medication but that only works for about three  to four hours and then I have to suffer the intense pain for another three hours before I can take another one. It just seems that Murphy's law applies very much to me. Here is some interesting information about E coli in UTI's. Just another routine day in my  life I suppose these days. I can tell you one thing, when I finally over all this I am going to be hard to hold down!!!!!!!

E. Coli and UTIs

Escherichia coli, or E. coli, is responsible for more than 85 percent of all UTIs, according to a 2012 report in the journal Emerging Infectious Diseases.

Several other common bacteria also cause UTIs, including Staphylococcus saprophyticus,Pseudomonas aeruginosa, and Klebsiella pneumonia.

Symptoms of UTIs include:

• Urination that burns
• Frequent, intense urges to urinate, even if there's hardly any urine to pass
• Urine that's foul-smelling, cloudy, or bloody
• Fever or chills
• Pelvic pain in women and rectal pain in men
• Pain in the lower back, abdomen, hips, or flank

Urinary tract infections aren't usually serious, but they can be dangerous if the bacteria make their way into the kidneys.

Left untreated, a kidney infection (which is still considered a UTI) can cause permanent kidney damage and even deadly blood poisoning.

Link to Dr. Vic, my new Gastroenterologist I saw this past Monday. This is is Jackson Hospital link.

https://jacksonhospital.netreturns.biz/providers/detail.aspx?providerId=546b3565-771d-4c46-a67f-e3ac66b7c23b#.VvQFKeIrLIU

This link will only work if copied & pasted I think. Also I just found out my UTI is back, or really it was never gone. My PCP called me in another antibiotic but it's pills & I don't absorb pills. Not sure why he can't remember that. I need it through an IV or it will never work. I will continue to have kidney stones I suppose.

I hope this link works. Dr. Vic doesn't have a personal website yet since he is in the process of building his own office in Montgomery. He is in the Goode Building by Jackson Hospital in Montgomery right now. He is the doctor that said he knows exactly what is wrong with me and how to fix it as soon as he opened my door!!!!! Most of the doctors, specialist are the worst! come in and say "we have to get some test first to see if we can find out what is going on with you". Then when their test fail to turn up anything they just end up telling you they can't find anything wrong with you and make you feel like they think you are making it all up. Right! Who in the world could make up all that has gone on with me the past three years. Who in the world would chose to do that anyway??? If I had my choice, I would be outside in the beautiful weather living life with my husband and daughter not laid up in a bed all the time because I'm too weak and sick to even dress most days. I just began my new TPN yesterday as well as my Calcitrol that he started me on. The TPN has an added file of B complex vitamins that I wasn't getting before that I need desperately to help regulate my parathyroid hormones in my body. That will control the calcium that has zapped all the bone density I had plus ruined my teeth, caused my hair to get extremely thin, bone pain, depression, and many other things. I'm not sure how long it will be before I start to notice a difference but I do know that I didn't get this sick over night so I have to be patient I know. I've said this before but patience is not one of my virtue's at all!!!!! We all live in a "fast" world these days. We want everything fast. Well, I want healing fast, but I will take it however it comes. I will give Dr. Vic a good shot at it before I get concerned simply because he was so sure of what was wrong with me, with no test, only looking over the notes on my case the nurse practitioner took and never even having said a word to me before saying he knows what is wrong with me. That deserves a good shot I believe. Besides, what else have I got right now????? I've been to doctors from Birmingham, to Dothan, to Pensacola, Fl, and back with nothing. Not even one of those doctors ever had a clue what was wrong with me other than I was malnourished. Well, anybody could tell that. I had a real bad kidney stone episode last night and one again this morning around 5:00 a.m. My back hurts so bad I feel like somebody is ripping  me apart! This is my first time with kidney stones so I wasn't prepared other than hearing other people talk about it but that isn't like experiencing it yourself for sure. It seems to me everybody I talk to tells me there is nothing they can do about them either. I was supposed to be getting an ultrasound on my kidneys but so far haven't heard a word from the hospital that is supposed to be doing it. My doctor said he faxed in the request and got a confirmation it was received, they say they don't have an order for an ultrasound of my kidneys so what is the patient supposed to do????? I've tried pretty much any home remedy anybody has suggested that might help them pass through easier and faster but so far nothing has prevented them. Until they pass there is no relief. I do have pain medication given to me by my primary care doctor but if I need one sooner than every six hours due to stones moving I'm out of luck. So that's where I stand today. If you have any suggestions about kidney stones, I'm open for almost anything. Other than buttermilk, lol. I did read on line buttermilk will make them pass but I just cannot make myself drink buttermilk. I've drank vinegar in water, beer (which is nasty!) and other things suggested but I'm open, let me know.

New TPN and medications have just been delivered!!!! Lot's of changes but I'm ready. Hyperparathyroid disease will not whip me!!!!!!

Well,  Home Infusion Services just delivered my new regimen that is going to make me well!!!!! I have faith it will. I have faith that Dr.Vic is the answer to many, many prayers that have gone up for me for three years. Many of you have stuck with me all this time, praying for me, supporting me, loving me. That is priceless to me because so many of you I don't actually even know other than through Face Book but you have become such good friends to me. You guys have been here for me when even some family hasn't. I know many people have believed that I wasn't really that sick since nobody could find a definite diagnosis for my health issues. I suppose I can't blame anybody since the doctors pretty much told me the same thing. Now I just feel total relief that I was blessed to find a doctor that really understands and believes me and knows exactly all I'm going through but better yet he knows how to fix it. I will never be cured, it will be a part of  my life until I die but it can be controlled once it is finally gotten under control. That will take time. I'm not a patient person, never have been. I wanted to find a doctor that would give me an instant cure. Well, that 's not to be but I do believe that today is the first day of beginning a treatment that will in time work it all out and I can live an active, happy life again for however long God give me on this earth. I have a lot of living to do and a lot of catching up. I never dreamed when this journey all began that I would still be sick, worse in fact and still not even have a clue what is wrong with me three years later. I really thought when I had the bile duct surgery that that was my problem and I would be completely well again but as you all know that have followed me, that was not to be. In fact it was a factor in not being able to even get some better since I have most likely had hyperparathyroidsim for many years, it had just taken time to get so bad I  couldn't go on anymore. I got a new drug today, Calcitrol,  that will be given by IV on a pole but it can go through my port. I will get that three times a week. Calcitrol is a drug used to treat or prevent low calcium levels and is used to treat poor parathyroid function, which is my problem. I got a whole new TPN feeding also. It contains much less calories than I was getting before but more phosphorus, more vitamin B complex, more protein from fat, all the things that someone on TPN for malabsorption/malnutrition problems needs. People on TPN for regular dietary problems do get a standard TPN feeding, which is what I have been on since January 4th thinking it was solving my problem. I don't fault my primary care doctor at all though because he was only doing what he knew to do.  He was trying, that's something the specialist never tried to do before finding Dr. Vic. I'm not sure how long it will take before I begin to notice a big improvement on my energy/stamina, etc. how long before I begin to get back to life as I used to know it but it can't come soon enough. However, I didn't get this sick over night and I won't get well over night. I still hope and pray that I can help other's that have had gastric bypass avoid all the problems I have gone through. First of all, the blood work that we need as gastric bypass patients is totally differently than standard blood work for normal people. Things like  vitamin D, magnesium, phosphorus, B complex vitamins have to be monitored closely. Those aren't standard blood work. If you are a gastric bypass patient, ask your doctor if those things are being routinely checked. If not, ask him to do it. Every time I would get blood work done and ask how it was I was always told "everything looks good" well, it didn't because the things I needed checked weren't being checked but I had no idea  those things weren't routinely checked. My primary care doctor only has two gastric bypass patients so he had no idea either, but now he does. Your parathryoid, PTH, level needs to be watched. If it is high, then you have a big problem. If it's high and your calcium, vitamin D, and phosphorus is low, you've got a definite problem. Then the problem begins where to go to get help. Even most Endocrinologist don't even recognize parathyroid disease because they normally only see thyroid problems, not parathyroid. I know it's not going to be easy, believe me but in the end my experiences might help you get help sooner than I did. If I had not found Dr. Vic though I'd still be in the same boat. I can attest that all Gastroenterologist are not created equal!!!!! I should know, I've seen a total of six in three years. Not one of them before Dr. Vic had any idea of my problem. Sad isn't it? So, I will continue to let you all know what happens as I get into this new treatment. Even if it doesn't go the way I hope and pray it will, even though I 100% believe it will right now, I will also tell you guys that. It's only fair to tell the truth in the whole thing. I can't mislead you and hope to help you. Continued prayers that I respond to this and do it soon!!!! Yesterday would be good!!!!

Finally!!!! New hope, another new doctor, but this time a doctor who has answers for all my issues dealing with my Secondary Hyperparathyroidism

Well, I am not even sure I had mentioned that I was to see yet another new doctor yesterday because honestly, I've posted that so many times before and then nothing came of it that I just didn't even want to go to this doctor. I was referred to him last week when I went to see the Endocrinologist that didn't seem to have a clue what to do with my hyperparathyroidism plus this doctor is a Gastroenterologist, so I figured, what can he say about hyperparathyroidism that nobody else can say, plus I had seen "the top of his field" down in Pensacola, Florida and he was clueless so just what can this doctor know that the rest haven't. I've been been suffering a severe sinus infection, as well has kidney stones and just was in lots of pain and just didn't want to go. I almost cancelled the appointment to be honest but I didn't because I figured if I had any idea of going back to Dr. Trippe I better keep the appointment so we got up at 4:30 again and went to Montgomery. My appointment was at 8:00 a.m. again and I just don't do mornings since I've been so sick and weak. I am so thankful this time I took the effort it took to get up there. First of all let me tell you this doctor's name, Dr. Viplove (Vic) Senadhl and he is a specialist in Gastroenterology & Liver Disease, Expert in Crohns, UC, Pancreatitis, Cirrhosis, Liver Transplant, GI Motility, IBS and Colitis, yep all that!!!! but more importantly, he trained at Johns Hopkins University in just exactly what I have!!!!!!!! He was in practice at UAB but decided to move to Montgomery and open up  his own practice to help more people like me that have severe gastro problems from gastric bypass! How cool is that???? His nurse practitioner came in first to find out why I came to see Dr. Vic, lol. We could see that poor lady was overwhelmed by all we had to tell her and we gave her the shortened version of all I've been through in the last three years. I told her finally that honestly I had no idea why we were there, what we hoped to find out from him, that we were there because we were told to come and after so many other dead ends we kept hoping that one day we would  find someone who might "get it". She left out to talk to Dr. Vic, as he is called due to his name, and Hamp and I were talking and we both had decided that this would be another dead end visit. The door opened and this very nice looking doctor, definitely of Indian descent opened the door and said words I will never forget "I know what is wrong with you and I know how to fix it". I said "you do????" He said yes, I do and I questioned him again if he were for real. He assured me he was for real and he did indeed know how to fix it. So we just sat there stunned and said, okay, how are you going to fix it. He started out by telling me that first of all my TPN (after looking at the bag himself) was all wrong. He said that Dr. Young, my PCP, had done his best but he just had no idea what somebody with my problems really needed, so in essence the TPN wasn't helping me at all but actually hurting me. He told me he would call Dr. Young himself and ask him if he would agree to turn my case over to him and let him redo  my TPN and care in general. I told him I was sure Dr. Young would not hesitate to do just that because he had pretty much done all he knew to do to help me and was struggling himself to know what to do next. Then he told me that once he got the proper TPN started with different things in it that I needed that I would begin to feel much better pretty soon but that wasn't all I needed. He is adding a treatment through my port also that will be drug that will help to treat my hyperparathyroidim that will help straighten out the mess my parathyroid has made trying to compensate for the imbalances in my hormones in my body, especially the calcium, which is also the culprit for my kidney stones and severe pain in my lower back. Too much calcium is spilling into my blood stream which goes to the kidneys and that causes stones or sludge in the kidneys that cause extreme pain. He also told me that I have to change my way of eating forever. Not a diet at all,  just a change in the things that I eat because I will never be cured of hyperparathyroidism because of the damage that is done by gastric bypass over time that causes it. He said reversing my bypass would do no good at this point nor would he recommend it anyway. I have gastroparesis, which several people had mentioned to me as a possibility, but that it too will be treated by the change in eating and just getting my whole body well again. I will be getting much more protein in my TPN as well the complex vitamin B's that my body has not been getting. plus upping the phosphorus much more to improve that faster. He said it's not about the number of calories I was getting in my TPN, all tha tis doing is putting pounds on me that I don't need and are doing me no good. I have gained 20 pounds from the TPN but yet I have been getting sicker since I've been on it. I felt that was happening but nobody believed me, they thought I just didn't want to gain weight. I don't mind gaining a little weight if it were doing me a lot of good and if that was the answer but he said it's not at all. He wants to decrease my weight again because getting fatter would only cause me other health issues that I had before, which is why I had gastric bypass in the first place. Basically my diet from now on will be low fat,low fiber, especially the fiber. Fiber isn't good for anybody with my problem. He said I need antibiotics for two weeks but that will be through Dr. Young, not him since that is for infection that I have that he isn't geared to treat. WOW is all I could say. I felt like I had won the lottery yesterday. I found a doctor that knows what he is doing and exactly how to do it. Now, my goal is even  more important to me, to find others who have had gastric bypass, of any kind! and let them know what is going to happen to them at some point. It doesn't mean they will all get as sick as I have if they happen to have a doctor or doctors that understand what kind of blood work and test that need to be done for a gastric bypass patient so that they can catch all this before it gets so far advanced as mine has. There is hope people!!!!! I really hate that it took me so long to finally find help, to find a doctor that actually trained in this and knows how to handle it. The thoughts that there are others out there that have either passed away from this without anybody knowing why they even passed away or they are as sick as I am and feel as helpless and I have. I had just given up really. I had decided that I would never get well again because nobody even knew for sure what is wrong with me and even if they do they don't know what to do about it. This disease is devastating.It takes a toll not only on the patient, but the patients family, friends, their social life, their world. I have things coming up that are so important to me in the near future that I felt like I would not even be able to do. My 50th high school reunion is in May and I want to go so badly but I felt like that by May I would not even be able to get out of bed at all or would be in a nursing home. The strain of taking care of me full time is wearing on my sweet husband. We have a 17 year old foster daughter that we both love and adore and want to live long enough to see her graduate high school and go on to college and become whatever she wants to be but I honestly didn't think I would even live long enough to see her graduate. I've been sick the two years we've had her and unable to be the mother I want to be to her. I have felt so much guilt about that, I wanted to be there for her but usually I'm in bed so sick I can't get up. Now I have hope. I am 67  years old so God  has never given me a time line to live but I had felt that I had pretty much met my timeline and wouldn't live to see any of the things that are important to me. I have six grand kids that I want to see grow up, graduate & get married and now maybe I can. Today I have hope, more hope than I've had in three years. My healing won't be instant like I had hoped but it will come, of that I am positive.If you are reading this and want information on going to see Dr. Vic please get in touch with me. He doesn't have a link I can post here yet because he hasn't been in his new practice long enough to have all that established yet but I will definitely get you to him if you need help. Stay tuned for the updates as I change my whole regimen of treatment & life. I can eat anyway I need to eat to maintain good health. It's not a hard diet to follow at all and I won't be giving up anything much that I hadn't already given up over three years of finding out what hurt my stomach and what didn't. I can eat normally within a few constraints. So I invite you to travel this road with me and see what God has in store for me.

Lord please I pray this is true in my life so that I might somehow touch someone else.

Can it get any worse???? I'm just getting sicker and weaker since seeing the Endocrinologist Monday. No cure for Hyperparathyroidism I guess, not Secondary anyway!!

Well, just when you think it can't get worse, it does. My lower back pain has gotten so bad I can't sleep, can't lay down and I'm pretty sure I must have kidney stones since I'm battling my third or fourth UTI again. I cried almost all night and rolled around on the bed. I started the Phosphorus pills Dr. Trippe gave me and guess what, they gave me diarrhea and I have been throwing up again. I lost six pounds in two days and that's being on the TPN still.  If my PCP doctor would just get with the Nutritionist I saw Monday and let her explain that my TPN needs to be adjusted and why then I could be getting the things my body needs and it would be helping me but I can't reach my PCP, it's almost impossible to even leave a message & if you do a nurse gets it and She decides whether I need to see the doctor or if I can just wait until the 28th when I have an appointment scheduled. I am not sure he would even get the message. I would have gone to the local ER here last night I was so desperate for some pain relief but if I go to ER then I have to go into my three year long illness and all that's going on and I'm just so sick I don't think I can do that at this point. I have some pain pills but only a certain amount so I can only take them every six hours and I couldn't take one until 5:00 a.m. this morning when I finally did take one and at least got a little relief but it won't last. I only slept about three, maybe, hours last night due to the pain in my lower back and constant trips to the bathroom because of my stomach issues. I hadn't thrown up since I have been on TPN but I did yesterday. I was told to eat peanut butter to try to get some protein in me, I did eat some on a piece of toast, threw it up for hours. It hurt my stomach so much it wasn't worth it. I have to figure out some way to get some protein in my body or I will die soon. I'm lactose intolerant due to the gastric bypass so nothing with any milk products will stay in me. My husband ordered some Isopure powder online because the Nutritionist recommended that since I could mix it with soy milk or water but it will take a few days to get here. He is gone to Wal-Mart right now to try to find me some kind of protein I can keep down. I have tried so many protein drinks in the last three years, none of them work for me. Usually they are so sweet even if they say sugar free, the sweetness makes me deathly sick to my stomach, another by-product of gastric bypass and now the hyperparathyroidism. I have decided that I am going to send an email to The Norman Clinic in Tampa, Florida, like I wanted to do in the first place and ask them what they advise me to do. If they say they can treat it without killing me with phosphorus pills and things that are making me worse. I'm really in a bad situation right now. I just honestly don't know what to do. When you do go see a doctor, it is eight weeks before you even go back and meanwhile you are getting sicker and sicker. I know I'm dehydrated again due to throwing up and diarrhea. I've got to figure out how to keep something down that has any protein or substance in it. I am still taking the liquid vitamin D3 the doctor gave me Monday but again, the nutritionist told me I wasn't getting enough B complex vitamins and my calories needed to be coming from fat, which is why she wants the TPN changed. So, now you know how my week has gone. I have barely been out of the bed except to go to Wal-Mart (a NIGHTMARE!) to buy Rachel a plain white shirt for color guard tryouts because she failed to tell me or Hamp she needed one until the day of the tryouts. I got a riding cart but still you have to walk to your car because there is nowhere to leave the carts unless you have someone with you to take it back. I got the shirt, took that and flowers to the school for her before tryouts and the came home for a couple of hours and went back to tryouts that lasted a couple of hours. I had to leave, I couldn't stay I was in so much pain in my lower back. That's my life these days.

My new doctor's visit Monday. Not what I had hoped for, still nothing positive. Secondary Hyperparathyrodism sucks!

Well, I had a very long, hard day at the Endocrinologist Monday. A day full of pain and depression. It was as I had expected, no real help for Secondary Hyperparathyroidism. No tumors to remove and only medications to try to get all the levels back up to where they need to be. Had to do a whole bunch of new blood test, don't know when or if I will hear from them and even if I do, what's the difference????? He gave me a vitamin B12 nasal spray that is supposed to help the B12 go into my system faster but I can only use it once a week! I got a prescription for phosphorus but again, it's pills, I doubt my system will absorb them. I asked him about that but he said my body could absorb these, I guess we will wait and see. He also gave me a vitamin D3 in drops that I take once or twice a day. All this will take time, if it even works. He also made me an appointment with yet another new Gastro doctor,like I haven't seen them before so I expect nothing there. It is in Montgomery of course and I have to be there Monday morning at 8:00 a.m. again. It is very, very hard for me to get there that early. I wake up in so much pain I can barely walk must less dress and ride and hour and a half. By the time I get there I'm exhausted and in dire pain. I suppose I will go but I'm not expecting anything at all from this visit. Honestly I feel like the visit to the Endo was useless really. I haven't ruled out The Norman Clinic in Tampa yet either. I am going to call them or email them and ask them what they suggest since I've seen an Endo who didn't seem to think there as much to be done about this. Am I supposed to just keep lying here until I slowly die? I've become quiet depressed again. I thought I had hope since I had used this doctor before but now I wonder. He asked why I was at an Endo doctor and I told him that is what my PCP doctor told me to do. Of course one doctor thinks everything another doctor had done or is doing is wrong. The one bright spot of it was I did get to talk to a certified Nutritionist and she looked over my TPN bag and thought they needed to make big adjustments to it and told us what needed to be changed. We called Home Infusion who said they couldn't change anything unless Dr. Young said it could be changed. Now I'm not sure how in the world anybody can get to him to even discuss it because he's not accessible to patients at all and his nurses don't have a clue how important it is when I try to see him or tell him something and I'm given the run around again. It is just so depressing to think this is how I will be the rest of my life, which doesn't seem that far away really if I don't get better. I decided last night not to take the TPN anymore so I took it off myself. I decided why keep taking empty calories that aren't doing anything other than putting weight on me but the weight is useless unless it's making me healthier. There seems to be no answers for my problem. My hips and legs continue to be so painful I can barely walk without a rollater and then it's still more than I can stand most of the time. It seems the iron I took wasn't the right kind of iron of something like that. There are two kinds of anemia, I can't remember which is which but the Nutritionist said she didn't think I was getting the right infusion in the iron I got. Yet another problem between doctors who don't even talk to each other or try to get this all together to help me. I am expected to just go to a doctor when I'm told to go, and do whatever he says to do, which I've done all this time but I'm just really worn out from it all. Test after test after test. Now I do know what is wrong with me, I just don't seem to be able to find anybody who is trying to help me get better in a timely manner. All I ever hear is "it's going to take time". Well, I've had nothing but time. I see no better for myself at this point and honestly, I don't see the point of wanting to live at this point because I have no life past my bedroom. My husband is worn out from taking care of me, I've become a 24-7 patient and I am always in pain and he just honestly doesn't understand how bad the pain is. He's the kind of man who rarely takes an aspirin, never sick other than his open heart surgery a few years ago and even at that he refused pain medication and just toughed it out. I'm weak, I can't tough it out. So, that's where I stand right now. I've even lost my desire to blog anymore because I have no hope to offer anybody that has Secondary Hyperparathyroidism. It seems we will all just be cast off because we had gastric bypass and now we are paying for it. I didn't have the information at the time to make a good choice, none of this was mentioned because they didn't know about it. Reversing the bypass is useless and I am in no shape to do it anyway if it would. So.... there you have it, the lack of hope is all I can offer to anybody in m shape.

Tomorrow is the first day of the rest of my journey to healing; I truly believe!!!!!!! I believe I will beat Secondary Parahyperthyroidism

I am so ready for tomorrow, even though it means I have to get up about 4:30 a.m. Yes, I said 4:30 a.m. I have to be at Dr. Trippe's office by 7:30 a.m. so that means a very early day for  us. It's about an hour and a half????? drive to Montgomery for us and that is all  depending on traffic. My appointment is at 8:20 but he requires you to be there at least 30 minutes early. Mornings are absolutely horrible for me. I wake up in so much pain I can barely even get out of bed but less dress. It usually takes me until around noon to even get enough pain relief that I can function. I now have to use my rollater all the time. I can't walk without it. A cane just doesn't  do it anymore and I hate that. The rollater is very hard to get in and out of the car. I know, I just did it!!!! It was in the trunk since we got home from the Jeff Bates concert the other night. I thought I might could get by with just my cane but I just can't. Hamp is at work & Rachel is in school  with flag corp camp until 6;00 p.m.so I decided I had to help myself. I struggled out to the car, I have a deck on the front of my house and that means going down five steps to get to the car  so that  meant even after I got the rollater out of the car, I had to get it up those same five steps. It took me awhile  and I'm hurting really bad but walking is so much easier when I can put most of my weight on the handlebars of the rollater. I had to wash my hair because I can't do it in the morning, that alone is a huge undertaking but it's done and I'm worn out but I won't have to try to do it in the morning. I'm waiting on my home health nurse to come because I spilled a whole cup of hot tea on my arm  a few nights ago and I have a 3rd degree  burn on my wrist where it puddled up around my metal watch band. Hamp has been cleaning it and putting antibiotics on it but she looked at it yesterday when she made her regular weekly visit to change my dressing on my Groshong port and she didn't like the look of it at all. She told me I just can't afford to get a bad infection in it so she called my doctor to get some Silvadene cream ordered for it. She is supposed to be coming to clean and dress it sometime soon. I got up and put some  chicken on to boil to make chicken and rice for dinner tonight and put a pot of peas on. My cooking is almost non-existent these days. If I don't get anything mostly done during the few hours a day I have that I can actually function a little better then I cannot cook anything for dinner. I feel horrible about that. I love to cook, or I did before I got so sick. I especially love to bake and now I can't bake anything anymore. My life these days consist of pain pills and lying in bed almost all the time. The pain in my lower back and hips has just gotten worse each day since I went to Brewton Saturday night to the concert. I suppose I overdid it, as I knew I would but I just had to do it for Rachel. I have come from a vibrant, vivacious lady to one who can't do anything without supreme effort and then I pay for it. So, I am looking forward to tomorrow in spite of the pain I will endure because I am praying Dr. Trippe will know what to do to treat me and I can began to live again. I sure hope that  if you're reading my blogs and have the symptoms I have laid out, especially if you also had gastric bypass, that all the information I have gained and posted on here will help you to get help before your parahyperthyroidism get's to the point mine has. I firmly believe that if any of the many doctors I've seen for the last three  years had suspected parahyperthyroidism and started treatment I would not be  in the shape I am today  so I pray that you won't have to go where I've gone.

HELP!!!!!! A bad day with my hip & leg pain. Ugh! I hate hyperparathyroidism disease

I am under so much pressure today. Tomorrow is the day I have to pull myself up my the boot straps, suck it up & get my niece & our friend to the Jeff Bates concert & I'm having a really bad day. Not just the hip & back pain but just the utter consuming fatigue. I'm so weak today after being up all day yesterday at the hospital that I seriously wonder how I can do this. Prayer is my only hope. Yesterday God got me through that MRI when I doubted I could do it because of having to lay so flat on my back for 45 minutes. God was in that tube with me, calming me, keeping the pain bareable. He will have to get me through tomorrow to but I don't want to just "get through ", I want to have fun. I'm so sick & tired of being sick & weak all the time. I hate being bedridden all the time. I have a very sweet friend whose son, age 42, passed away suddenly Wednesday & his wake & funeral is this afternoon between 1:00 -3:00 p.m. & I want to go so badly to just be there for her & support her but I'm worried that the receiving line will be so long & I'm too weak to stand there  that long so I'm just jingle here trying to make a decision. My life has been one decision after the other for the last three years. I just want to get stronger & the pain to go away so I can enjoy whatever years in have left. I know I'm blessed because I could have cancer or some other uncureable disease so I am thankful for that but when you have nothing but time on your hands, you basically are bedridden most of the time you just get depressed. I do try to give it to Jesus,  most of the time but then that ole devil gets in me & I start having a pity party. Today is one of those days. I've refused to take my feeding bag with me tomorrow because it's so heavy I believe it's the reason the pain in my hips & legs is worse than the other places I have pain. So....just another day in the life I live with secondary hyperparathyroidism.

Test, test & more test when you have Secondary Hyperparathyroid disease

Today has been a long day for me but I'm  finally home and in bed again, where I spend most of my life. I had to go to Enterprise, Al, where my PCP is and about 25 miles from where I live, to the hospital to have an MRI on my pituitary gland and an ultrasound on my parathyroid glands. Since I've been in so much pain in my hips and legs I had to use my rollater walker because I just can't walk very far without it, especially if I'm having to carry around that heavy TPN bag and I had to take it because we got it hooked up too late yesterday to get it done before we left so it had to go. The MRI was absolutely horrible because having to lie so still for so long on your back  with  hip and leg pain is almost unbearable. I made it through but I wasn't sure if I would or not. I was just hurting so bad. I prayed the whole time I was in that tube that God would help me get through it and to stop the pain so I could endure it. Of course I won't know anything about it until  we go back to the doctor next week. I'm not going to the PCP though and he's the one who ordered it but I suppose the Endocrinologist that I'm going to will get the results too. I am just so ready for next Wednesday to get to the Endo doctor. I have such high hopes this time that I have finally found the right doctor with the answers and knows how to treat my disease or at least can send me where I can. Sometimes I honestly just want to die and get it over with. Each day is just so hard for me, the pain just never ends, even with pain medication I don't get much relief. I hope that my blogging about all this will help somebody out there that is searching for answers, that's all I want out of all this blogging is to help. I want to be honest, tell it like it is, show it like it is so that others can see the real journey we take as someone with a little known disease, Hyperparathyroid disease. Saturday is going to be the biggest trail I've gone through in a long, long time though. I had bought VIP tickets for my foster daughter to go see Jeff Bates in concert this Saturday. I bought the tickets a while back just praying I would be better by the time the concert came around but unfortunately it's gotten much worse due to the intense, burning pain that started in my hips and legs a week ago. I WILL do this, not sure how but I will. She's been through so much in her life before e took her in and I've been sick the whole time we've had her but I've pushed through and done a few things with her but this time is different. When your hips and legs hurt this bad it is so hard to walk, even with a walker.  I walk like a snail, one little step at a time trying to keep from putting too much pain in the hips. I have determined I will do this though and I will. Not only the pain but the extreme fatigue. I just get go worn out and so weak I can't stay up very long at a time but I have to manage this. At least I will have to be up six hours minimum, maybe longer. We have to drive about 40 miles to the concert and then home afterwards. If I wasn't crazy enough for doing that, I also rented a friends vacation home she has in Pigeon Forge, Tn. a  while back to take my foster daughter up there for her spring break. Another niece is flying in to join us but we have to drive. It's about a 7 hour drive for us. I barely can ride, must less drive. I also shall do that somehow, someway. There again, I rented it in hopes of being a lot better by then. We will be leaving on March 30 after two doctors appointment the two days before and coming back April 2. We did this last year and I was sick but not nearly this sick. I already told her I was not going to be able to get out and do anything much with her but she's okay with that. Her aunt, my other niece that's coming is much younger and in much better health than I am so she's going to do the running around. I'm going to just sit on my friends front porch in the swing and listen to the screams from Dollywood (did that last year) and just enjoy the mountains around me. I love the Smoky Mountains so much that I have yearned to go up there just to be calm and relax. Now if I can just get up there!!!!! More on these issues later. Thank you for reading my blogs and please pray of me.

Here's a link for a blog about Parathyroid, Primary & Secondary

http://blog.parathyroid.com

I found this blog, again from Norman Parathyroid Clinic in Tampa Florida.  This is THE clinic that is the leaders in parathyroid surgeries due to Primary Hyperparathyroidism.  However as I've stated over & over mine is Secondary Hyperparathyroidism which normally produces no tumors that can be surgically removed to cure the problem. Still in find this blog very informative & I follow it daily because I'm still in the very early days of even being diagnosed with hyperparathyroidism. I wish my cure would be so simple. I'm having an ultrasound done on my neck tomorrow,  prior to going to the Endocrinologist next Wednesday because my PCP set it up when I was there last Thursday & finally got diagnosed with hyperparathyroidism although he & my husband/nurse (not literally ) both agree mine is secondary but we still have to have scans done just to make sure. If you found my blog by googling parathyroid disease is want to be able to give you links that can lead you to some extremely important information that has made a huge difference in my future care. Without us finding all this information by searching online trying to understand why I've been so sick so long I believe I would have eventually passed away & become another statistic,  someone who died from something like kidney failure never having it linked to the real culprit,  hyperparathyroidism.

Amended list of symptoms of Hyperparathyroidism

This is a much better list of symptoms than the one I listed before and I have all of them. Now you know what life is like living with this disease.

Symptoms of Parathyroid Disease (Hyperparathyroidism)

• Loss of energy. Don't feel like doing much. Tired all the time. Chronic fatigue. (#1 symptom)
• Just don't feel well; don't quite feel normal. Hard to explain but just feel kind of bad.
• Feel old. Don't have the interest in things that you used to.
• Can't concentrate, or can't keep your concentration like in the past.
• Depression. (blog)
• Osteoporosis and Osteopenia.
• Bones hurt; typically it's bones in the legs and arms but can be most bones.
• Don't sleep like you used to. Wake up in middle of night. Trouble getting to sleep.
• Tired during the day and frequently feel like you want a nap (but naps don't help).
• Spouse claims you are more irritable and harder to get along with (cranky, bitchy). (blog)
• Forget simple things that you used to remember very easily (worsening memory).
• Gastric acid reflux; heartburn; GERD. (blog)
• Decrease in sex drive. (blog)
• Thinning hair (predominately in middle aged females on the front part of the scalp).
• Kidney Stones (and eventually kidney failure). (blog)
• High Blood Pressure (sometimes mild, sometimes quite severe; up and down a lot).
• Recurrent Headaches (usually patients under the age of 40).
• Heart Palpitations (arrhythmias). Typically atrial arrhythmias. (blog)
• Atrial Fibrillation (rapid heart rate, often requiring blood thinners and pacemakers). (blog)
• High liver function tests (liver blood tests).
• Development of MGUS and abnormal blood protein levels.

Most people with hyperparathyroidism will have 5 - 6 of these symptoms. Some will have lots of them. A few people will say they don't have any... but after an operation they will often say otherwise. 95% of people with hyperparathyroidism will have 4 or more of these symptoms. In general, the longer you have hyperparathyroidism, the more symptoms you will develop.

A list of symptoms of Secondary Hyperparathyroidism

Here is a list of the symptoms of this disease. I got this off of the Mayo Clinic website.

Symptoms

By Mayo Clinic Staff

Hyperparathyroidism is often diagnosed before signs or symptoms of the disorder are apparent. When symptoms do occur, they're the result of damage or dysfunction in other organs or tissues due to high calcium levels circulating in the blood and urine or too little calcium in bones.

Symptoms may be so mild and nonspecific that they don't seem at all related to parathyroid function, or they may be severe. The range of signs and symptoms include:

• Fragile bones that easily fracture (osteoporosis)
• Kidney stones
• Excessive urination
• Abdominal pain
• Tiring easily or weakness
• Depression or forgetfulness
• Bone and joint pain
• Frequent complaints of illness with no apparent cause
• Nausea, vomiting or loss of appetite

The ravages of Secondary Hyperparathyroidism, showing the real me as I am unless I'm going out.

I can't believe I'm posting this but I promised you guys to be totally honest about all the aspects of this disease. One of  them is that you feel awful all the time. This is a never before seen picture of me with no makeup and my hair not done, just blow dried. I honestly hate posting this because I'm a very vain person, lol. I thank God every day for makeup and hair help, lol. I  was told once by a black friend of mine who saw me without makeup that white people shouldn't ever go without makeup,lol. In my case she was right. I just feel like a totally new person once I do all the things that make me me. The next couple of pictures will show you the transformation. You will never see me like this in public I can assure you!

This is the next step. I have my makeup on and my hair was "fixed" with the flat iron but as  you can see my hair has gotten very, very thin. I love my long hair & didn't want to cut it so I started looking for something to help me have a little help, add some thickness to it. My next picture shows you what I found and what it does!

Okay, this is how you see me out in public and why people tell me all the time I don't look sick. I'm glad I don't "look sick" because when I feel like I don't look my best I just don't feel  good at all. So, this is me with my Halotte Halo flip in that I mentioned before. It is so simple to use, it's  human hair (just not my human hair!) and the lady who does them matches your hair perfectly just from a picture. This flip in is attached to a very  thin wire, like fishing line kind of. You put it in with the wire close to the front of your head and then you began pulling your natural hair over the top of it with a special comb. Once I get it combed it you cannot tell it's not all my hair. It makes me feel  good and gives me confidence. I tried some before finding this one and they were awful and didn't match and weren't human hair so they just frayed badly. I wanted a human hair one that looks real and thankfully I found this wonderful lady that lives in England who hand makes these. She is now making me  a new one even though this one is still perfectly fine I  just wear it so much that I know it will eventually wear it o ut and want a stand by, lol. Maybe it's not for you, I'm not trying to sell anything on my blog, I'm just trying to be totally honest with you and show you and tell you what it's like to live with this disease. I haven't mentioned by feet yet in any of my post. I was diagnosed with Peripheral Neuropathy almost a year ago. My feet started burning so bad and they tingled and just were so painful it was hard to walk. I went to a Neurologist who did  absolutely nothing to help me. I started buying anything anyone recommended to me to stop the constant burning and hurting. It kept me from sleeping it was so bad. Now, finally, I find out that it isn't really neuropathy, it's another symptom of the hyperparathyroidism that I now know I have. It causes burning and tingling in the feet and sometimes even in your hands. I also found a product that actually works, stops the burning. It's a pair of socks I ordered one night when I was desperate for relief. I can't even explain them, they have a built in gel bottom on them and whatever is in that gel works, it stops the burning. The only thing is I have to wear those ugly black socks all the time and summer is coming and I want to wear sandal's  but I'm hoping I will be well by summer since I'm finally going to a doctor that I think can treat my disease and the symptoms will disappear or at least be manageable and the burning will be gone. I also  have burning in my eyes all the time. My eyes burn like your eyes burn when you have been in a swimming pool too long. So far nothing has helped my eyes so I'm still hoping all this will go away. Okay, now you've seen me as few people have ever seen me. Even in the hospital if  I'm not totally out of it or in ICU as I was twice Hamp knows to bring my makeup so I can at least put a little on. I don't make him bring my hair though, lol. I'm going to get a list of all the symptoms of hyperparathyroidism and just post it because there are many more I haven't talked about yet. Still hoping to help somebody that needs help badly as  I did.

Praise report!!!!!!!!!!!!!!!!!!!!!!!Finally!!!! I just got a call from Dr. Trippe's office, the Endocrinologist I'm going to see and I have an appointment at 8:20 next Wednesday!!! A very early appointment for us living in Opp but we will get up and get there. I honestly believe that Dr. Trippe will get to the bottom of this and know how to treat it. I was almost in tears when they called and told me when to come in. All the other specialists I've seen in the last almost three years took forever to get an appointment to even see them. She told me to be fasting when I come because he will do lots of lab work. I already knew that from using him before. He is a very thorough doctor and that is exactly what I need! Thank you Lord for helping me get this far and for finding the doctor that I believe can help me!

Random pictures of me going through just part of what I've gone through during my illness with Secondary Hyperthroidism

Today I just wanted to share a little bit of my struggle to find out what is wrong with me by showing you all a few pictures of what life is like on a daily basis for me dealing with the SHPT (that is an acronym for Secondary Hyperparathyrodism and I will use it often rather than type it all out. I did just get some pretty good news about my phosphorus from my Home Infusion service that mixes up my TPN feedings each week, my phosphorus came up this week from 1.2 to 2.4 !!!! That is a miracle. It had been going up a little and then way back down. They have to get my phosphorus back up to normal, which is between 3-4 before my symptoms such as extreme pain, breathing problems, extreme fatigue, just generally feeling like you just can't go on will ever get better. I praise the Lord for this and every little step I take. I still haven't heard from the Endocrinologist so I'm still on pins and needles waiting for them to call and set me up with an appointment to find out how to treat my SHPT so I can finally get well and begin to live my life again. I just want to be normal, whatever normal is for a senior woman of my age, which is 67. I have a lot of living left to do. I have a wonderful husband who has stood by me through all this that deserves a wife he doesn't have to nurse all the time. I want to feel like getting out riding the Harley with my sweetie again. That is something we both just love to do and I have only ridden once in  almost two years and it was just a very short ride and it wore me out. The feeling of being behind him on that V-Rod with the wind in our faces and the world at our feet is so awesome and I miss that. I miss dancing with my husband, just enjoying all the things we used to do. After all, we are still  newly weds because we have only been married almost four years but I've been sick most of that time so I want to be the wife my husband thought he was getting. He's such a good man. He's a godly man who cherishes our marriage and we both just want to be able to go to church together and me not have to stay home. So, in my attempt to get the word out to anybody I can about this disease & the effect it can have on your body, your soul, your  mind, your family, just everything you do I will be nothing less than honest and show even the bad parts of this disease. I hope soon I can begin to show the healing part of this disease.

Me getting an iron infusion

This is how I feel all the time!

?

 

In the hospital again, getting work on the Groshong port in my chest.

My 20 lb. bag of TPN I carry around for 16 hours a day!!!

The bag of TPN with the vitamins in a bag beside it that my husband has to add to the feeding before he hooks me up.

Just another procedure I had to have trying to get nutrition in to build me up

My bag of iron that I got once a week for four weeks. It ended up the iron caused my phosphorus to drop to .8, which is critically low so it's been a battle to get it back up.

I have no idea how much longer I will have this in my chest but it's going to be a good while. I had surgery on the Groshong port three times, The first one just didn't work right and he kept trying to get it to work but finally decided I would have to go back to surgery again to put a new port in. Thankfully this one is working fine.

Trials and Tribulations of living with Secondary Hyperthyroidism Disease

Today is just another long day in my journey. I've continued to have the extreme lower back, hip & leg pain but no answers yet. I still am very sure it's the 'bone pain", another symptom of this disease, that continues to plague me daily. It isn't enough that I deal with the continuing chest pain and trouble breathing due to the low phosphorus I have, you guessed it!!!! another symptom of my disease. One ray of sunshine in this otherwise cloudy day, I got a call pretty early this morning from my PCP that I went to see last Thursday, who promised to get me an appointment with Dr. Bruce Trippe, and Endocrinologist in Montgomery, telling me that they did talk with Dr. Trippe's office and they are supposed to be calling me soon with an appointment to go to Montgomery and consult with him and hopefully he will know all about SHPT and how to treat it. At least I'm holding on to that hope for now. I will take anything right now. I saw my home health nurse this morning for a dressing change on my Groshong port and for her to draw my weekly blood and she is supposed to let me know how my phosphorus is this week because this past week it went way down again in spite of receiving 40 mg. in each bag of TPN I am getting each day. I believe if that was going to do any good I would already begin to see a big jump up in the phosphorus levels instead of it going back down. The phosphorus is very important because it is the thing that is causing so many of my problems right now, weakness, chronic fatigue, chest pain, trouble breathing, heart palpitations and just a general feeling of udder depression that I might never get any better. I want the medical world that control all this to do something about it now, don't make me wait and wait for yet another appointment with somebody that possibly can do something to help me. This disease is hard to live with because nobody understands it, even when you try to explain it to them, and if they see me doing things, which I am very rarely doing anything because I don't have the strength or energy to do anything, they think I must be okay. I'm not but I have a 17 year old foster daughter who really needs me right now so I push myself as much as my body will allow me to to get up out of bed sometimes and make an effort to do something with her. My husband, her uncle, has to do almost everything with her because I'm just not able. While I'm whining I will just throw this in. I bought VIP tickets for Rachel's birthday present to go and see Jeff Bates in concert March 12 in Brewton, Al. and when I bought the tickets I honestly believed and hoped I would be better. Well, I'm not and now I'm so worried about this concert. It's this Saturday and I lay here and wonder if I can actually hold out long enough to do this. My heart says yes, my head says no, lol. I learned one thing, I cannot will myself to do anything anymore. I used to be able to do it before I got this bad, the phosphorus problems, then my hips and legs are hurting me so much each step is so painful. I have to just creep along with my rollater walker but that is so cumbersome to take around. Taking it out of the trunk and getting it opened up is a chore. Rachel can do it but still I just hate that I have to go that way. I used to be a ball of energy, a barrel of fun, always the life of the party until this disease started controlling my life. I am praying about this because I do know that prayer and God are the only answers for me. I know the doctors can treat me when I find the right one but I also know Jesus is the great physician and He's been with me through all this from the beginning so I know he hasn't forgotten me. My faith isn't strong sometimes, I falter and then I'm ashamed of it. I guess there are other things out there that are much more important but right now, being with Rachel, being the mother to her that she needs me to be, have fun with her like we used to do when I wasn't so  sick is just the most important thing in the world to me. I'm hoping tomorrow I will get that call to go see Dr. Trippe to see what kind of treatment her wants to do on me. So, good night all, I started this earlier this morning but just didn't have enough energy to finish it so here it is and I pray you all have a good night's sleep and awake in the morning feeling great!

Vitamin D Deficiency Linked to Weight Loss Surgery Complications

Vitamin D Deficiency Linked to Weight Loss Surgery Complications

I shared this on my SHPT blog because it goes hand and hand with this disease. My vitamin D is extremely low which was another thing that is used to diagnose SHPT disease. I had no idea that my vitamin D was so low because that isn't something that is usually ever checked in routine blood work your doctor does. Mine wasn't checked until the doctor ordered the PTH test to see if my parathyroid harmones were too high, and of course they were. All these years I assumed when I had blood work done that because I am a gastric bypass patient that ALL the things I needed to be checked routinely were being checked. Another big mistake for me, being too complacent about my own health. Ask your doctor boldly if he is checking things like vitamin D, ferritin, phosphorus,  calcium. Those are the indicators of parathyroidism,  you need to know & make your doctor aware of the problem that we gastric bypass patients face because most PCP as well as any other doctors just simply aren't aware that the percentage of gastric bypass patients that have parathyroidism is right at 100%. Some are in early stages of it, which is the time it needs to be caught & addressed before they end up extremely I'll like me. Had I known a long time ago what I know now I assure you I would not be where I am today. I would not sit back & just assume that everything I needed to be checked was being checked. I can't stress enough to you if you are reading my blog looking for help that YOU need to be proactive,  take your health into your own hands & don't be like I was, going from doctor to doctor being treated like you were just lucky they even took their valuable to even see you & if they can't find anything wrong with you, they make you feel like you are just making everything thing up. I was told by one specialist I saw after he did his test but couldn't find out what is wrong that you should just go on home & just die since that's what you seem to want to do! I was so upset I left there crying because I couldn't believe he had talked to me that way, he was so arrogant & rude. I got severely depressed because I felt like nobody even believed I was so sick & I was just getting sicker & weaker as time went by. Just read, educate yourself about parathyroid disease & keep up with your own blood work & don't be afraid to ask questions & show your doctor the proof, just as we did.

Another day in my journey of Secondary Hyperparathyroidism, my nurse

These are a couple of pictures of my nurse, lol, my awesome husband, long term care giver, nurse & doctor in training. Well you get the picture. I don't know where I would be without this man. We got married 4/27/12 and he is the love of my life. However when he pledged "in sickness or in health" little did he know what he was signing on for. I've been sick almost from the beginning of our marriage but he's stood by me, took care of me, and continued to love me. He's  had to clean me up when I was too sick & weak to do it for myself, he's washed my hair, he's learned enough about nursing by on-the-job training than he ever wanted to learn I'm sure. He's given me injections,  put antibiotics in my PICC line, now he's learned to finish mixing up my TPN feeding by injecting vitamins in the bag & hooking me up every day for 16 hours a day. He's had to learn how to work on the pump that puts the feeding into me through my Groshong port. He's gotten up at night when the alarm  goes off on the TPN indicating there is a problem that he has to figure out what to do about it. He's been through  five surgeries, two of them I almost died because of complications.  He stayed right by my side two weeks at UAB, never leaving my side. Yes, I love this man more than there are words to tell you. He also was solely responsible for finding out that I have SHPT,  by searching online by erratic blood work so if I could nominate him for Husband Of The Year award  I know without a doubt he would win it. He already has in my book!  So if I had to be sick, I praise God for this  man for loving me through all this. Just a day in my life on my journey to health.

Norman Parathyroid Clinic Tampa, Fl

A link to Norman Parathyroid Clinic in Tampa, Fl. I thought I might go there but after talking to my doctor Thursday and realizing that I have Secondary Hyperarathyroid disease and it can't be operated on that I am going to try going to the Endocrinologist  in Montgomery Al that I used to use. He is a top notch doctor and leaves no stones un-turned  to find out exactly what is wrong with you and how to go about treating it. I am now just waiting to hear from my PCP doctor to get back with me and tell me when I can go see Dr. Bruce Trippe in Montgomery. This Norman Parathyroid Clinic looks like the best you can find if you have Primary Parathyroid disease and have tumors that can be removed. I most likely don't have tumors because most SHT people don't but I am having an ultrasound next Thursday to see if there are tumors on any of the four parathyroid glands. If I were to have tumors and need surgery we will definitely be going to the Norman Clinic. Just pray that I can get into Dr. Trippe's office quickly so I can began to feel better soon. I have a big trip coming up and I want to be able to go. My foster daughter, Rachel and I have rented my friends beautiful home in Pigeon Forge for Rachel's spring break and another niece, Debbie is meeting us up there and her two children live very close to Pigeon Forge so we are planning on having a wonderful time. I just pray I am strong enough to even ride up there. I can stay in the house and rest as much as I need to while the girls all go out and have fun. I want to be able to have fun too though. So here's another useful link to Secondary Hyperthyroidism and how to treat it.

The increases in parathyroid hormone (PTH) after gastric bypass surgery.

Increases in parathyroid hormone (PTH) after gastric bypass surgery appear to be of a secondary nature.

Jin J1, Robinson AV, Hallowell PT, Jasper JJ, Stellato TA, Wilhem SM.

Author information

Abstract

INTRODUCTION:

Endocrine changes, particularly increases in parathyroid hormone (PTH), occurring after gastric bypass procedures have been reported but are not well characterized.

METHODS:

We reviewed retrospectively patients who underwent Roux-en-Y (short limb (SL) = 75 cm, long limb (LL) = 165 cm) gastric bypass procedures at our institution from January-December 2005. Patient demographics, laboratory values of serum calcium, Vitamin D, and phosphorous concentrations as well as levels of alkaline phosphate and PTH were followed at quarterly intervals for one year.

RESULTS:

140 patients were identified. Mean age for the group was 45 years and 90% of patients were female. The average BMI was 49.2. The mean PTH levels increased from 29.4 immediately post-op to 43.1 ng/mL (P < .001) one year after surgery. Five percent of the patients had hyperparathyroidism (PTH>53 ng/mL) immediately postoperatively; the ratio then increased to 21% at one year. Only two patients had evidence of true primary hyperparathyroidism with increased PTH and hypercalcemia. Sixty percent of patients had at least a 10 ng/mL increase in PTH level at the end of one year, reflecting a 30% increase from baseline levels. Vitamin D deficiency (levels <20 ng/mL) were identified in 45 patients (32%) initially postoperatively and they continued to be low compared to the rest of the population (P = .004). Vitamin D levels did vary with seasonal sun exposure and were greatest in the third quarter (July-September). Sub-analysis of the group showed that patients with LL gastric bypass had lesser Vitamin D concentrations (22 vs 30 ng/mL, P < .01) compared to SL patients.

CONCLUSION:

Although preoperative endocrine abnormalities are present in patients undergoing gastric bypass procedures, the derangements intensify after gastric bypass surgery. A four-fold increase in patients with elevated PTH deserves special attention. When combined with the concurrent prevalence of low serum Vitamin D and normocalcemia in this population, we propose that this is a disorder of secondary hyperparathyroidism requiring medical treatment with Vitamin D supplementation.

PMID:

 

18063076

 

[PubMed - indexed for MEDLINE]