How to get accurate information and ways to get answers from docs?

Posted by stuckonu @stuckonu, Dec 29, 2019

Do doctors or specialist ever comment in/on connect?

If not I’m curious about getting specific/accurate information about a blood test and results that vary what seems like a significant amount in one month period of time.

I discovered here about Hyperparathyroidism which I had never heard of until someone here suggested that I read the article here on Mayo.

That said, it is almost a joke trying to get tested and to get straight answers about the condition as well as the tests. If I could record all that has occurred since I read the article and tried to be tested.

If nothing else I read in the article here that some or all of the blood work should be done fasting. None of my tests have been done fasting and the push back that I get just mentioning it is crazy. I thought that perhaps the reason why my blood work is all over the place is because each time it’s been taken has been late in the day. None of the doctors were interested in previous tests. The tests have been done 3 time in one month. PTH is always high but that test alone had one doc call it moderate and another calling it significant.
One doc said we want to know why it’s high, the endocrinologist did an ultrasound and reported to me that where there once was two nodules no there appears to be more but that an ultrasound can not determine if any of them are the gland or just benign masses. That said the hormone is high.
Even my Vit D has varied a lot in one month; going down while taking 50,000 a week.
Lastly no one who is listed including Mayo will talk over the phone unless I’m referred.
Does anyone know definitively if the test needs to be done fasting and is it possible to have radical swings in the chemistry they are looking at to determine a plan going forward.

Interested in more discussions like this? Go to the Just Want to Talk Support Group.

@veteranspouseinpain

No you are not a doctor but u have honestly can see the world for what it is. A lot of Americans other than soldiers have not seen the world the way it actually is. So you're stories or what you're saying is very very insightful. Thank you for sharing that

Jump to this post

I do understand the world as it is. I am not a veteran but in a sense I did go to war. The war zone was where I use to work. I was suppose to go to Vietnam, but the draft lottery came along at that time and I wasn’t called. All my friends from high school got drafted. Some came back some didn’t. The ones who came back didn’t make it either. They depended on the V.A. for help. What a sad joke. One of the main differences of my war zone was I didn’t have to leave the U.S. That is really weird. Maybe the other is I had no one watching my back. The only person I would compare that to was a friend who was a tunnel rat. In the end, he couldn’t stand anyone around him. He ended up moving to some out in the middle of no where to live. I agree that anger and hate and violence is not well understood by people who haven’t had in their lives. Yes I think going to a shooting range and blowing something up can be a good. I use to like that myself. I did get rid of mine for a good reason. They are to easy to use and take very little effort. Way to much temptation for someone like me. On my job, we weren’t suppose to have weapons. That was just a dumb idea. I had to go to those areas all by myself. I never saw a cop and never had one save me. They took on average about 1 1/2 hours just to show up to a crime scene and they would show up with 4 or 5 cars with 3 or for cops in each. They also had guns. I worked in those areas for 15 years before I went off on a supervisor. I won’t say anything more about that as it is over and done. I will tell you my youngest son has been in the Marines for the past 19 years. He is a gunny. I have listened to his stories as he has spent time in those wonderful places in the world where people hate our guts. In listening to him, he was in a different part of the world but the same things he experienced were the same as mine. I am 71 and I am not interested in fighting with anyone anymore. I can’t even if I wanted to. I am still the same inside and I hate the people who tried their best to kill me but they didn’t. For some reason I am still here. You or your husband may have heard this saying” What doesn’t kill you will make you stronger”. If you ask me , that is Hollywood bull*. In every fight I was in, I lost even if I won that fight. I have permanent scars mentality and physically from that crap. Something to think about.

REPLY
@goldleaf

I do understand the world as it is. I am not a veteran but in a sense I did go to war. The war zone was where I use to work. I was suppose to go to Vietnam, but the draft lottery came along at that time and I wasn’t called. All my friends from high school got drafted. Some came back some didn’t. The ones who came back didn’t make it either. They depended on the V.A. for help. What a sad joke. One of the main differences of my war zone was I didn’t have to leave the U.S. That is really weird. Maybe the other is I had no one watching my back. The only person I would compare that to was a friend who was a tunnel rat. In the end, he couldn’t stand anyone around him. He ended up moving to some out in the middle of no where to live. I agree that anger and hate and violence is not well understood by people who haven’t had in their lives. Yes I think going to a shooting range and blowing something up can be a good. I use to like that myself. I did get rid of mine for a good reason. They are to easy to use and take very little effort. Way to much temptation for someone like me. On my job, we weren’t suppose to have weapons. That was just a dumb idea. I had to go to those areas all by myself. I never saw a cop and never had one save me. They took on average about 1 1/2 hours just to show up to a crime scene and they would show up with 4 or 5 cars with 3 or for cops in each. They also had guns. I worked in those areas for 15 years before I went off on a supervisor. I won’t say anything more about that as it is over and done. I will tell you my youngest son has been in the Marines for the past 19 years. He is a gunny. I have listened to his stories as he has spent time in those wonderful places in the world where people hate our guts. In listening to him, he was in a different part of the world but the same things he experienced were the same as mine. I am 71 and I am not interested in fighting with anyone anymore. I can’t even if I wanted to. I am still the same inside and I hate the people who tried their best to kill me but they didn’t. For some reason I am still here. You or your husband may have heard this saying” What doesn’t kill you will make you stronger”. If you ask me , that is Hollywood bull*. In every fight I was in, I lost even if I won that fight. I have permanent scars mentality and physically from that crap. Something to think about.

Jump to this post

@goldleaf- WOW. I'm speechless and that's a big thing for me. I'm familiar with the armed forces as my husband and his son and others were in the service, and this goes way way back. Are you referring more to a war within yourself and people whom you became involved with or an actual "US service position?" My twin sister's daughter was murdered and no one was brought to justice. I know anger. How can I help you?

REPLY
@merpreb

@goldleaf- WOW. I'm speechless and that's a big thing for me. I'm familiar with the armed forces as my husband and his son and others were in the service, and this goes way way back. Are you referring more to a war within yourself and people whom you became involved with or an actual "US service position?" My twin sister's daughter was murdered and no one was brought to justice. I know anger. How can I help you?

Jump to this post

Thank you for your reply. You have an interesting take on what I wrote. I had a job working for a major telephone company. The areas where I mostly worked in were Watts, Compton and Paramount. Sometimes, if you watch the news, you will see some of the project buildings and where a crime happened. I use to see the crime happen first hand. The physical fights I had never made it to the TV. I didn’t get killed. I also never saw a police car when the fights use to take place. They don’t patrol those places ever. They just show long after they happen. Everyone in the garage I worked out of had those fights so I wasn’t the only one. Our union use to keep a log of all those incidents but never did anything to help us. The company I worked for took the I don’t know what you are talking about approach or this military approach of the needs of the service where this is your job just do it and stop complaining. There was one time when the company invited a couple of the police agencies, Sheriffs and the LAPD, to give us a lecture on how to deal with gangs. It was very dumb and way too late. I was working for them for 10 years already. When a couple of guys told these officers that we had to go there alone day or night, they looked at us in disbelief. That was when the supervisors shut that meeting down. I won’t tell you anything else as it brings back bad memories. War in myself, I like that idea. I will have to give this more time to roll that around in my head before I talk about that idea. I will get back to you.

REPLY
@goldleaf

Thank you for your reply. You have an interesting take on what I wrote. I had a job working for a major telephone company. The areas where I mostly worked in were Watts, Compton and Paramount. Sometimes, if you watch the news, you will see some of the project buildings and where a crime happened. I use to see the crime happen first hand. The physical fights I had never made it to the TV. I didn’t get killed. I also never saw a police car when the fights use to take place. They don’t patrol those places ever. They just show long after they happen. Everyone in the garage I worked out of had those fights so I wasn’t the only one. Our union use to keep a log of all those incidents but never did anything to help us. The company I worked for took the I don’t know what you are talking about approach or this military approach of the needs of the service where this is your job just do it and stop complaining. There was one time when the company invited a couple of the police agencies, Sheriffs and the LAPD, to give us a lecture on how to deal with gangs. It was very dumb and way too late. I was working for them for 10 years already. When a couple of guys told these officers that we had to go there alone day or night, they looked at us in disbelief. That was when the supervisors shut that meeting down. I won’t tell you anything else as it brings back bad memories. War in myself, I like that idea. I will have to give this more time to roll that around in my head before I talk about that idea. I will get back to you.

Jump to this post

@goldleaf- I hope that I didn't completely misunderstand you! It was hard to tell if you were an undercover agent of some sort or something that kept going over and over in your mind. Witnessing fights and killings on the streets surely make you feel threatened and has to be so scary. You must have always been looking over your shoulders! That must have been terrible without the it all being complicated by being denied it's reality and support by the powers that be. You sound as if you are still very effected by it. Can I help in anyway?

REPLY
@merpreb

@goldleaf- I hope that I didn't completely misunderstand you! It was hard to tell if you were an undercover agent of some sort or something that kept going over and over in your mind. Witnessing fights and killings on the streets surely make you feel threatened and has to be so scary. You must have always been looking over your shoulders! That must have been terrible without the it all being complicated by being denied it's reality and support by the powers that be. You sound as if you are still very effected by it. Can I help in anyway?

Jump to this post

The result of all those years end with me going off on a supervisor at work. He made the mistake of not letting me walk away from some dumb thing he just told me. In brief, I had trashed my knee while climbing a pole. I had to have surgery to sort of repair the damage. It took me about 8 months before I could return to work. In the mean time I had filed a worker’s compensation claim to make sure I would have future medical care for it. This company didn’t like that. When I returned to work, that case had settled and the company sent me to a place where they had a custom made brace made for me so I could still do my job safely. They didn’t like that either. There were additional things that they agreed to thru my lawyer that they were suppose to do for me. They went back on that agreement. There way of “ punishing me”, was by leaving me all day or night in those areas I told you about. I had several job titles during my employment there. At that time, I worked cable maintenance. Fixing damage caused by bullet holes mostly. It required a lot of time in one place. I had to deal with a new problem, everyone could see this brace and there would be no running away from trouble. So now I had to deal with this company’s crap and the gangs in that area. Fun times. One of the things that I was told by my lawyer was anything to do with this injury was to happen on company time,it was company business. No exceptions. Well needless to say this one dumb ass supervisor decided he didn’t have to do that. For no reason he decided I needed to go to a doctor of his choosing and wanted me to on my day off. I said that wasn’t going to happen and turned a walked away. Dumb ass grabbed me from behind. What happened next was from all the fights I had been in. I through him on the floor and had a knife at his neck. The only thing that saved him was the guys who were still around me. The company then sent me to a psychologist that day and I never went back to work. I had called my lawyer and the result of a 3 year long additional workers compensation case, which ended in me receiving an life time award of 100% compensation award. Since there was more to this than I will go into and there were more people involved in this company that also received awards from this kind of behavior it would take too long to explain. About a year ago while out walking my dog, I ran into this guy who had a shirt with this companies logo on it. So we started to have a conversation and he told me that for awhile he worked out of that garage. He told me that this company had made a complete reversal on its policies in this area. Now one goes there alone. Two or three guys at one time and everyone stays there until the job is done. You only go there in the morning and leave by 12:00 noon. Too bad it took people being hurt and nearly killed for that to happen. It seems it takes that for any powers to be, to make that to happen. I appreciate the offer of help. I saw a very good therapist for years. If you have the time look up Central Sensitization Syndrome. I had an operation about 5 years into therapy that caused permanent nerve damage. There were a series of problems that stemmed from that surgery and those things snowballed into this medical problem. The reality is no one can help me now. I am stuck with a mountain on top of me with no way out. No cures and no treatment that help. I am told this happens rarely but so what.

REPLY
@goldleaf

The result of all those years end with me going off on a supervisor at work. He made the mistake of not letting me walk away from some dumb thing he just told me. In brief, I had trashed my knee while climbing a pole. I had to have surgery to sort of repair the damage. It took me about 8 months before I could return to work. In the mean time I had filed a worker’s compensation claim to make sure I would have future medical care for it. This company didn’t like that. When I returned to work, that case had settled and the company sent me to a place where they had a custom made brace made for me so I could still do my job safely. They didn’t like that either. There were additional things that they agreed to thru my lawyer that they were suppose to do for me. They went back on that agreement. There way of “ punishing me”, was by leaving me all day or night in those areas I told you about. I had several job titles during my employment there. At that time, I worked cable maintenance. Fixing damage caused by bullet holes mostly. It required a lot of time in one place. I had to deal with a new problem, everyone could see this brace and there would be no running away from trouble. So now I had to deal with this company’s crap and the gangs in that area. Fun times. One of the things that I was told by my lawyer was anything to do with this injury was to happen on company time,it was company business. No exceptions. Well needless to say this one dumb ass supervisor decided he didn’t have to do that. For no reason he decided I needed to go to a doctor of his choosing and wanted me to on my day off. I said that wasn’t going to happen and turned a walked away. Dumb ass grabbed me from behind. What happened next was from all the fights I had been in. I through him on the floor and had a knife at his neck. The only thing that saved him was the guys who were still around me. The company then sent me to a psychologist that day and I never went back to work. I had called my lawyer and the result of a 3 year long additional workers compensation case, which ended in me receiving an life time award of 100% compensation award. Since there was more to this than I will go into and there were more people involved in this company that also received awards from this kind of behavior it would take too long to explain. About a year ago while out walking my dog, I ran into this guy who had a shirt with this companies logo on it. So we started to have a conversation and he told me that for awhile he worked out of that garage. He told me that this company had made a complete reversal on its policies in this area. Now one goes there alone. Two or three guys at one time and everyone stays there until the job is done. You only go there in the morning and leave by 12:00 noon. Too bad it took people being hurt and nearly killed for that to happen. It seems it takes that for any powers to be, to make that to happen. I appreciate the offer of help. I saw a very good therapist for years. If you have the time look up Central Sensitization Syndrome. I had an operation about 5 years into therapy that caused permanent nerve damage. There were a series of problems that stemmed from that surgery and those things snowballed into this medical problem. The reality is no one can help me now. I am stuck with a mountain on top of me with no way out. No cures and no treatment that help. I am told this happens rarely but so what.

Jump to this post

@goldleaf- You must feel very abandoned and I can't imagine the anger that you feel. What are you doing to help yourself now? Are you mobile? Do you have family or friends to help you?

REPLY
@merpreb

@goldleaf- You must feel very abandoned and I can't imagine the anger that you feel. What are you doing to help yourself now? Are you mobile? Do you have family or friends to help you?

Jump to this post

Thanks for your interest. Abandoned not really. I would have to be part of something to feel that and I have learned not to be dependent on anyone. Anger would be a mild word as to how I feel. I do as many things that I am capable of doing myself. I was a phys. Ed major in college and I have been exercising since I was 5. I have practice meditation since I was 16 and practice martial arts, Kung Fu, for a few years when I was in my 20’s. My work was my exercise from that time on. If you met me on the street, you would be able to tell how much pain I am in or how ill I am. People shocked when I explain my medical problems. I eat a very healthy diet. I have no choice. Look up the map diet. I can only eat the natural foods on the low side. The high side I have allergic reactions to. The inside of my mouth becomes numb, the same for my tongue and my lips swell up. It is called mouth allergies. Chemical sensitivity is more like it. My deadly allergic reaction is to shellfish. I take my dog for a walk twice a day for about an hour. My feet hurt like hell but if I walk it is tolerable. My problem is standing still. I can only stand in one place for about fifteen minutes before the pain is unbearable. Same thing happens while I am in the car. My wife drives me now. The longest I can sit is about 20 minutes before I can’t stand the pain. That is after I have had the injection I get from the neurologist Those injections last about 8 to ten months. That has to do with the fact of chemical sensitivity to drug. The injection last longer for me. I can only drive for about a half hour before I have to get out of the car and walk around for awhile. The doctors offices are about 3/4 hours away. Sounds like fun doesn’t it. Then I have to go home with all that pain crap again. When that injection wares off, and that is without any warning, I am hit with excruciating pain. It feels like someone just stuck a red hot poker up my ass. Ice packs and then a heating pad are my only relief that I can use now. When this happens no one can help me not even my wife. All she can do is watch. The last time this happened she nearly passed out twice. She had to call my oldest son and he had to leave work and come to my house, just to take care of her. He has seen me go through this before many times. Like I said he can only watch. I then have to make an appointment with neurologist and see when he has time to see me. After seeing him I have to wait for approval from the insurance company for the injection and then I have to wait for a time to see the neurologist again to have that injection. It takes about two weeks for the injection to completely work. Sometimes he misses the exact spot, like this time and I have to go though the whole process again. I have another appointment in two weeks and maybe it will take this time. That is only for this painful spot. With Central Sensitization Syndrome, you hurt all over all day anyway and there is no treatments for that. I exercise and that helps some and I take hot showers and use a shower message attachment which helps some. For the most part, I just have to eat the pain. On top of that, there is the psychological part of this syndrome. That I can’t describe, it is too unreal for the average person to understand. You would have to have this syndrome to get that. Hypersensitivity is all consuming as it affects your entire central nervous system. In reality no one, even the doctors who know about this, can do anything to relieve the stress it causes or the pain you have to endure. My only option is to learn to accept this. This is the hell I have to live with for as long as I can. I also realize I am 71 and nature will take it’s course. Aging has it’s own hell and I will have to decide when I can’t deal with that extra pain.

REPLY
Please sign in or register to post a reply.