How to get accurate information and ways to get answers from docs?
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.
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As to what happened to that doctor who prescribed that Fentynal, well nothing happened and nothing will happen. Another long story. As far as unusual, you might be right but I don’t think so. I have talked to at least 20 lawyers about malpractice and about being compensated. In the beginning of 2011, when I started on this Fentynal crap I saw two different doctors at this pain clinic. I only saw them two times. The rest of the time for my appointments I saw either a registered nurse or a physicians helper. On my last visit there, I was told I no longer needed to come there and they were going to give written permission for my primary doctor to prescribe this med for me. That was suppose to save me time an energy so I wouldn’t have to drive and wait for them. From the end of 2011 to 2017, the primary doctor did this for me. He knew nothing about Fentynal and very little else as it turns out. There was no monitoring of this as there is suppose to. Every so often, my primary doctor wouldn’t be in his office and another doctor who worked in his office would authorize that prescription and I never spoke to that doctor or had an appointment with that guy. This primary doctor pulled a disappearing act when I had that pancreatitis attack and I never went back to see him. As far as a malpractice suit, well that is complicated by how I was affected by the Fentynal. With no understanding on what happened because of the unknown factor of chemical sensitivity and no visible sighs of injury to my pancreas and no blood tests that would show what was happening, it would be hard to prove in court. Lawyers don’t like these kinds of case because of the cost to investigate them. Another real dilemma. It would have to pay them 5,000.00 dollars up front just to get specialist for this and that is not including the lawyers fee. I could have proved my case since the gastroenterologist that I have, could validated this but he would have to stick his neck out to do this. I will give an interesting fact that really happened and is very unusual. Your pancreas does a couple of things. One is the production of insulin and the other is the production of the enzyme that allows your body to absorb the nutrients from your food. The insulin part was functioning but the enzyme part had stopped. The reason I was starving. The reality of this whole Fentynal situation is no one will really be compensated for. How do you compensate dead people and the people and the pharmaceutical companies have too much wealth to really lose anything for their crimes.
@goldleaf you have been through so much, some damage apparently irreparable, unfortunately. It is almost impossible to prove malpractice, and doctors are of course human and can make mistakes.
Despite all you have been through and are still going through I hope you can find it within yourself to not let your feelings ruin every pleasure in your life. If you do you are only punishing yourself.
JK
I understand what you are saying since I have heard the same thing from from a lot of people who feel this way. Yes doctors are only human and they make mistakes I know I have. Mistakes are things done by accident not on purpose and they are forgive able. I an accept that and move on. This is not the case here. This was on purpose and since this sort thing happened to thousands of people, it is unforgivable. Since you don’t know me other than these short emails, I have lived a life time of this sort of thing happening. I use to talk to a very good psychologist, who felt as you seem to until she heard what I have been thru in my life. We have ended that relationship after seeing and talking to her since 1996. She told me that she has a file draw filled with my stories of what people have done to me. She is still amazed that I am still alive. One of the odd things about ending up with Central Sensitization Syndrome and I also read about this while doing my research, is that people who are affiliated with this have had a history of crappy things done to them. I won’t bore you with that and it is too personal but I will relate something that is also rare to happen. I was award in a worker’s compensation case, a 100% compensation award. I use to work for one of the largest telephone companies in the U.S. I use to work in some very bad areas where there were a lot of gangs and violence and drugs. This company decided that it was OK to have us go there alone anytime day or night. I was in a lot of fights with the people there and witnessed the same things that only the police see but I got to enjoy that entertainment by myself. The police in those areas never showed up by themselves and they had guns. Out of the 25 other guys who use to work out of the same place where I was, 15 of them left do PTSD. No one will ever hear about it as this company has been very good at keeping what they quite. My lawyer told me after my case was settled that he was tired and disgusted with all the people that have come through his court with the same sort of complaint against that company. This happened just before my operation and my experiences with doctors and the healthcare system. I was compensated sort of in this matter but that didn’t last long since my case settled in 2002 and the worker compensation laws changed in California in 2005. I had to give up the good medical professionals I was seeing use only this new MP list that insurance companies now were aloud to use. They were really bad doctors. Maybe you can tell by this that I see the world differently than you. Again I have had a lifetime of this sort of thing happening. I am also human and have feelings like everyone else. In respect to going to someone for help medically and they do pretty much take the same attitude towards you and pull the same sort of things, it is really easy to recognize. As far as my attitude and outlook on life, well I still have my family who care about me and I have five grandchildren who I have fun with. I enjoy that and the time I have with them. And then there are the alone times and this is the hardest for me to deal with. I am in a lot of pain all the time, physically and mentally. Family can’t be with me 24 hour a day and I don’t expect that.. They have their own lives to live. I am older and that is a problem. I find those words from a song I heard a long time ago, “ I am a rock I am an island” which you might recognize are very true. I have become those words. Something to think about when dealing with people and giving advice on how they should feel. I don’t give advice on how to live your life or how to survive in this world. I am not a doctor or a psychologist.
All I can say is damn. I'm so sorry that happened to you. it's people who go to script doctors that ruin it for people who really need their medication. Honestly it really pisses me off. My husband needs his medication and he has to jump through the hoops to get it. I hope everything gets done well for you and let me know in the future what's a happening
@goldleaf From the sounds of this you are dealing with all of the problems in the most positive way possible. I am truly sorry for all you have been through.
JK
I would be telling you a lie if you think this about me. The reality is I have no choice if I want to survive this. I also am aware of something that I have gathered from all the posts I have read here and my own experiences with Central Sensitization Syndrome. Stress and stressful situations cause health problems all by itself. One of the major problems with this syndrome is hypersensitivity to everything about the central nervous system. Since this in its self will do me in, and it does increase the pain I am in, I have to deal with it intelligently. For someone like me, with all the years of hate and anger built up in me along the way, it is nearly impossible now. I am making the effort anyway. I have found that I can no longer do that the same way other people can. I have tried all those avenues. The neurologist I see is a practicing Buddhist and an expert at meditation. We have had many heated discussions about this very good method of calming. I have also practiced this for many years myself. The reality is I can’t do this with the degree of pain and anger I have. So I have had to adapt to a different way. I would call it a mixture of everything I know. I am still working on that. I would like to make a suggestion and if you think this might help someone else use it. I look up to very few people. I have very little interest in heroes or what people would consider as heroes. There are so very few people that I know who I would consider good. If I would do that, the youngest of us, children, especially children with genetic illnesses, would be first on my list. We are adults with a lot of life’s experiences and they have none. Their only experiences are pain. They see things in black and white with no gray areas. We have a lot of those gray areas that influence are thoughts. I have 5 grandchildren, so I am use to the way they see an answer questions. If you want to see how to deal with pain talk to them. Go to a children’s hospital and see how they deal with that and their lives. You would get a very true full and realistic answer. I have had lots of conversations with my grandchildren and they have always said something that has humbled me. They are very wise. It is just a suggestion.
@goldleaf Children truly are remarkable, and inspirational. I am always amazed and impressed at how those who have horrible medical conditions can be so cheerful. We really can learn from them.
JK
Hi -- my doctor also said that fasting is not necessary.
I don't know where to begin other than to say I feel the exact same way. Holding everything in and having anger that I can't let out. In the past two years I started seeing a therapist and she made a couple of suggestions. I don't know if you would agree with these suggestions but it helped with me. Doing meditation does not get anger out. Painting does not get anger out. But here in Texas where I'm from going to a shooting range helps getd the anger out. Don't ask me why cuz I don't know how the mind works. But doing something like that and or kickboxing and or doing something physical helps. But like I said that's my opinion and I know a lot of people did not agree with my opinion. It all depends on where your mind is. Some people shouldn't be doing those things. My husband is in a hundred percent pain everyday every night and he says the adrenaline rush is what helps make the pain go to the back of your mind. Even 4 hours after you're done. But he's Ex black ops so he likes shooting.
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