Never Late

Posted by stuckonu @stuckonu, Oct 29, 2019

Then, within the last week or so I was late twice: 5 minutes for my therapist 20 mins for my PCP My PCP was asked by my shrink to give me a competency test so I was his last patient. The therapist I’m seeing is puzzled about the competency test request. I did tell my therapist why I think the shrink who my therapist never met and doesn’t know only meets with me for 30 minutes at a time once every 6 months if I’m lucky more often than not it’s more like every 9 months.
It occurred to me that part of the problem with health care in general is that most doctors have little or no contact with other doctors that we see. Someone will inevitably bring up medical records and or “ notes “.
I’m already feeling anxious about my earlier post about being mindful of the length of my posts. My mind is racing attempting to imagine how to explain just what I mentioned so far.
Isn’t it at least important enough to wonder how and why a psychiatrist and a “ therapist “ LCSW don’t have any communication about a patient? As it turns out, most people that I have asked this same question to don’t think it’s so unusual at all. Remember that the shrink contacted the PCP to administered the comp test.
Based on what I know and also in part what I don’t know, I think it’s impossible to make this a short post. I do think it’s possible to break things down into several posts that will explain a few things and raise a few questions that I think are critically important in general that may shine a light on the much bigger problem of how we all got to this giant mess called “ health care “
I’ve written in my journal that I wish it was possible to wear a body camera as the police now wear to eliminate the he said, she said situations that complicate getting to the truth about what happened. Of course most individuals and professional business’s do not want to be recorded. I keep thinking of something my grandmother taught me when I was about 6 years old. She told me that “ if you tell the truth you never need to worry about remembering what you said “ I apply that saying to wearing a body camera: what is there to worry about if all one wants to do is to have a record of what is said and done?
Why did the shrink want a competency test? I’ve been complaining about a “brain fog” and other circumstances that have been happening more frequently and lasting longer.
Here is where I’m going to attempt to keep the information short.
This isn’t something that just happen for no reason. I see a reason and correlation but it doesn’t show up in any medical journals or well known illnesses so he immediately thinks that it’s signs of early onset dementia. I tell him that it’s stress related. I’m not a doctor so that theory gets tossed out.
Add to this my blood tests done about a year ago which showed extremely low Vitamin B12 and Vitamin D The VA hospital that did the test called home before I arrived back home after the test. The message was to return the call ASAP I called and was told to return the next day. 80 plus miles round trip. I asked if it could wait a week. The nurse said no because the numbers were so low that they wanted to repeat the test and make sure the test was taken correctly. I asked how low it was and all she said that in over 20 years of medical service she had never seen numbers so low. I honestly didn’t know nor do I know now how low is really low or what it means.
I was given injectable B12 and 5000 units of D3 tablets I’ve taken B12 shots before but I was never told to inject myself once a week for two months!
A year has gone by and the B12 If now “ high normal “ the D is still low after a year of making several efforts to get the D back to normal.
From what I’ve read, all of the most complained about symptoms that I’ve had for over a year now can be associated with low D including the brain fog, vision problems, digestive problems, sweating and lots more.
I don’t know where to go or who to see.

Does anyone know which specialty doctor can look at this with new eyes?

Hi again, @stuckonu

I'm not sure that you answered my question about reading the link about hyperparathyroidism. Did you read it? Did you see any other symptoms other than the low Vit D level that you could relate to?

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@rosemarya

@stuckonu, I just now came up on this message. I must compliment you on your ability to recall and write about your experiences. I see that you and @hopeful33250 are onto a plan to make communication with your caregivers more meaningful. Is that right?

Here is what has worked well for me as an efficient tool for my doctors. I kept a notebook and I entered:
– the date,
-my symptoms,
-treatment or medications (over counter and Rx) and any supplements , -doctor, if one was involved,
-running list of any changes as they occurred.
-I also kept a journal of my narrative because it let me express my own thoughts and feelings which helped me to cope when I was in failing health waiting for
my organ transplant.

Let me know if this sounds like something that might be helpful for you.

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Hi Rosemary, thanks for joining in and contributing your suggestions and thoughts. I’ve been a journal writer since my 20s before, in fact most people were familiar with the word journal and journaling in any event I know that your suggestion is a good one but it takes two; meaning that the doctor needs to value what you’re doing and listen if both of those things don’t happen then I’m not sure what you wind up with. I know that with my VA doctor I often find that none of what’s written down gets discussed.
As far as my remembering details of experiences I can tell that I think that there is a name for the way that I remember things I don’t remember everything thank god but what I do remember usually has way more details than anyone else remembers. It’s not “ photographic “ and it’s not what Mary Lou Henner has called H-SAM
In any event I can tell you this which is interesting IMHO: my private PCP doctor listened really well and when I told him that I could show him how to actually see something that wasn’t there. He was very fascinated. So I set up the demonstration and I could tell that he was blown away. It wasn’t magic or slight of hand it was science and in a way the human bodies way of fooling us.
Over time I think that he was no longer entertained he was something. I actually thought it was jealousy because I knew all of these things that he didn’t know nor did he know anyone who knew the same things. It’s gotten really bad because he can’t answer my questions nor is he interested in my suggestions.
I would LOVE to find a doctor like a few that I’ve had over the years. My favorite one died unexpectedly and it’s so difficult for me to just talk about him or even mention his name without choking up.
You are on to something if you already do what you suggested to me. If your Docs accept what you are doing you are a lucky person especially if you are a transplant person!
Thank you so much a God be with you! Sounds like she already is!

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@hopeful33250

Hi again, @stuckonu

I'm not sure that you answered my question about reading the link about hyperparathyroidism. Did you read it? Did you see any other symptoms other than the low Vit D level that you could relate to?

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Hi T, so in all honesty I did not read the link you post on the first go around; now I read it and it shouldn’t be a surprise to you since you seem very insightful and perhaps you possess those qualities that I wish that I could find in a doctor.
Maybe the next thing to do is follow the suggestions on the link which would mean planning a trip to one of the Mayo Clinic’s or maybe to one in particular. I’m certainly willing to do that. But going back to some of my other posts about finding a doctor or hospital that first of all takes the low D seriously. I now live in the Raleigh-Durham area which is often called the research triangle. They boast about having some of the best most progressive ground breaking doctors and facilities. So why has it been so difficult getting a return call?
To go over all of my efforts and attempt to COMMUNICATE with any of my doctors has been maddening. I wonder if I can get a call back from the clinic listed in your link. I’m not asking for a freebie, over the phone DX I’d just like to find out before hand what exactly they would like to see. The VA facilities do not even communicate with each other so my records are all over the place and one of the things that I have been repeating over and over again including yesterday when I said to the private pcp: “ my concern, dare I say FEAR , is that I’ve been complaining about these symptoms for over a year and we do not know how long I’ve been D deficient because it was only a year ago ( almost to the day that the Florida VA did the blood work and they were so concerned that they asked me to return the next day The test were done again and they were the same. “ How long have I been this way and what if damage has resulted from a cavalier attitude be every facility and doctor? I still do not feel/think/see any provider regrouping. It seems like your goal is to get my D level to a normal range but no one knows how long it’s been going on. I’ve had this incredible memory and now stress bombards me with brain fog and blurred vision. My shrink actually laughed at me because all of the tests that they’ve done for vision problems come back normal so he told me this: “ honestly I think it’s all in your head and I’m afraid to tell you that I think you are pre-dementia and I’ve change your records and ordered competency tests. He communicated this to my private pcp ( my shrink is a VA psychiatrist ) the competency test was done last Friday. The nurse he administered the test was making faces as I answered all of the oral questions but after she read what I wrote down when she asked me to write a sentence was amazement! When the doc came in he said” not only did you hit the ball out of the park you knocked the cover off of the ball “ but he’s still dismissing much of what I tell him and even show him.
I’m admiring that this treatment or lack there of only makes matters worse.
The shrink actually called the suicide help line and they sent police to my Moms in Fl and to my house in NC and to make the story more interesting I was in the ER for the fourth time and second time in two days. Not for suicidal thought but because of killer stomach pains. The nurse warned me that if the cops decided to haul me off the the psych hospital there was nothing they could do, they’d need to release me. I lucked out and the officer who interviewed me was a Veteran. He informed me that the call is subjective and if the officer doesn’t want to deal with you off you go for up to a 72 hour hold. My officer asked me similar questions to the competency test and deemed me non-suicidal. 5 hours later I was admired and was at a new Cleveland clinic in a new level of wards, one below ICU but not regular ward. After reading everything I could find about low D it sounded like it was possible that I was there because of that. After 4 days the doc came in and suggested exploratory surgery. My nurse who was standing behind the doctor was shaking her head NO!!! So I said no and was told that they thought that I had a small bowel obstruction but want to go in to look around. My nurse said that she knew me better than the doc and she knew all of my tests and said it wasn’t clear so that was why they want to do exploratory which she said is always risky especially around the digestive system.
Thank you for that link and your help. Like my nurse I think people here listen better than many doctors. I need to find an endo here or travel to Mayo.

Any other feedback from anyone is welcome!!!

GRATEFULLY THANKFUL!

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@stuckonu

Hi again Teresa, yes I did see your mention of the endocrinologist. Sorry I didn’t include that part of the story. I think I can keep this part short. I called the Mayo Clinic and John Hopkins basic customer service line and told them that I was told that I had a major D deficiency and I wanted to know which specialist would best be suited to answer my questions because I had read “ endocrinology AND hematology “ could someone there tell me which specialty would best be suited to address my questions. In both cases the operator transferred me to someone else for me to repeat my question along with why I was not sure. In both cases I was told that they would get back to me. So far no one has returned my call. It’s been over a week. So do you know for sure the endo is the best place to ask?
Not one of 4 PCP docs have suggested a referral. And as I mentioned in one of my epic posts my VA PCP who I basically like and think that he’s a good doctor for the most part took over an hour with me on my last visit and although he took a blood test I think he did it like walking up to a roulette table and putting all of your money on a 50/50 bet : red/black odd/even because he knew that with all of the D that I’ve been taking that the odds were on his side that I was no longer low. He lost the bet and sent me a letter along with 50,000 units of D2
He also told me that someone wrote a book about low D and it turns out that the author didn’t have the best credentials to write such a book and furthermore much that has been written about is not based on “ real scientific studies “ So he thinks that most D worries are based on pseudo science.
So what would you think of getting 50k of D in the mail with no plan or schedule for a follow up blood draw.
I thank you once again so much for caring to reply and comment. If you think or better yet know that endo is where I need to go I will ask around and attempt to make my own appointment. In Florida it’s getting near impossible to make an appointment with anyone except a PCP or family physician. Is this a sign of the way medicine is headed?
I know that this is already long but I would like to include a part of my theory on how and why things change. In short there are little changes that most people don’t see and they especially do not recognize how this one piece fits into the bigger picture. Over time no one even knows what you’re talking about. Not only do I think that I’m into something I think it’s so important to understanding so many major things from weather, healthcare, politics, and relationships.
I think that I have a responsibility to share what I know and what I think and feel.
I’m working on a screen play and I mentioned to my therapist a short documentary. She is immediately excited by my idea and a sketch of what it will look like.
I will announce to you here and now my working title. You are the first to hear it beside my therapist: the working title is called :
“ THE COST OF LIVING “
You need to think of the title as a broad expansion of the words.
What do you think of the title and the idea?

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@stuckonu I don't really know how IU translates to mg but after having a vitamin D test showing that my D was borderline low my PCP prescribed vitamin D2 50,000IU (ERGO). I checked with my transplant department and they said it was fine. I am only to take it once a week. Just now it occurred to me though, isn't D3 what a person is supposed to take to supplement calcium?
JK

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@hopeful33250

Hello @theshewolf1 and welcome to Mayo Connect!

I am glad that @rosemarya's post was helpful to you. It sounds like you deal with a lot of different problems related to the closed head injuries you received while in the military.

Here are some other Connect conversations that you might find helpful, just click on the link and you can read and respond to the posts of other Members,
https://connect.mayoclinic.org/discussion/help-help-help/
https://connect.mayoclinic.org/discussion/adult-life-after-a-tbi/
We also have a conversation on Connect about how to approach a new specialist in the most effective way. While it addresses visiting a new specialist, I think it is a helpful guide for any doctor's appointment. Here is a link to that discussion,
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/?utm_campaign=search
@theshewolf1, What is the worst symptom that you are trying to get help with?

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Hey T to answer your question about the worst symptom OMG!
Do I only get one?
I won’t drag this out I just want to say that over the year since the low D was detected I keep thinking about watching and experiencing major changes and actually told my doctors “ you would think that I was making a big deal about a splinter in my little finger. My fear I believe is happening which is this: over time things get worse and some morph into other things. Some new things pop up and some old things just get worse and worse. I’ve actually though that I’m fading away

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@theshewolf1

I appreciate your reply and I am trying to get my team of docs on the same page. As a retired soldier, I suffered quite a bit of head trauma so my migraines are horrible and the blackouts/seizures are back with a vengeance. I take a boat load of meds; however, my endocrinologist is working on removing several and adding one.

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@theshewolf1, I think that understand what you are saying about trying to get all of your docs on the same page. In a perfect world that would happen without you having to intervene, However in today's world, with all of the complex tests and medical medical records, there can be an overload of medical information to be discussed in a relatively short office visit. That is why the list has served me well. It has even served me well at most of my doctor visits. If you and your endocrinologist are working to remove and to add medications, you might find it helpful to record any related symptoms that you observe. Then share with the endocrinologist next visit.
Another thing that has been a big hit with a cardiologist that I was referred to, was when I took a list of questions that I had written on a piece of paper. When the attending nurse saw them, she asked for them and then gave them to the doctor before he came in to see me. Would you believe that he read them before he came in to see me, and he answered each question for me! He is my choice of a cardiologist if I ever need one!

I really hope that you find some relief from what you are suffering as a result of the head trauma.
Has anyone looked at the list of your medications? Would you consider asking the endocroninologist to take a look to be sure that they are safe to use in combination?

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@contentandwell

@stuckonu I don't really know how IU translates to mg but after having a vitamin D test showing that my D was borderline low my PCP prescribed vitamin D2 50,000IU (ERGO). I checked with my transplant department and they said it was fine. I am only to take it once a week. Just now it occurred to me though, isn't D3 what a person is supposed to take to supplement calcium?
JK

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Jk, I read that D2 is vegetable sourced and D3 is animal. After my hospitalization for what they said was a small bowel obstruction I decided to go back to my quasi vegetarian diet: no animal flesh which includes fish and fowl. Based on what I’ve been reading I did the wrong thing because vegetarians are none to be D deficient. I’m still in the dark because there’s no finger on the pulse.

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@rosemarya

@theshewolf1, I think that understand what you are saying about trying to get all of your docs on the same page. In a perfect world that would happen without you having to intervene, However in today's world, with all of the complex tests and medical medical records, there can be an overload of medical information to be discussed in a relatively short office visit. That is why the list has served me well. It has even served me well at most of my doctor visits. If you and your endocrinologist are working to remove and to add medications, you might find it helpful to record any related symptoms that you observe. Then share with the endocrinologist next visit.
Another thing that has been a big hit with a cardiologist that I was referred to, was when I took a list of questions that I had written on a piece of paper. When the attending nurse saw them, she asked for them and then gave them to the doctor before he came in to see me. Would you believe that he read them before he came in to see me, and he answered each question for me! He is my choice of a cardiologist if I ever need one!

I really hope that you find some relief from what you are suffering as a result of the head trauma.
Has anyone looked at the list of your medications? Would you consider asking the endocroninologist to take a look to be sure that they are safe to use in combination?

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My neurologist took the sheet of paper with my questions and copied it into my medical records. My memory isn’t as good as it used to be but I am sick of others judging me and trying to tell me what to do. My life is a never- ending nightmare on some days but it doesn’t mean I am a child or be talked to like one. I have been independent since 18 so please stop treating me like I am an invalid.

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@hopeful33250

Hello @stuckonu

You make some very good points about doctors communicating with each other. If you have a large inter-disciplinary medical center near you, like a university medical school or a Mayo facility, you will have greater communication between your different physicians as long as they are all part of the same center. Since you go to the VA, you might be able to get records from each doctor after your appointment and bring them with you to the other appointments. It might seem awkward at first, but it will be better for you in the long run.

As you are having problems with a low Vit D and a high Vit B12, have you consulted with an endocrinologist? If not, this might be a good idea.

I'm looking forward to hearing from you again. Will you post an update?

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Afternoon session < g > I was reading that article again and realized that my body was talking to me and the doctors as well. The docs listen to my body as much as they listen to me. Two years ago my back pain and joint pain moved to another level. One doc ordered a full spinal MRI and similar to last years call from the VA before I got home requesting that I call back immediately. If the phone number is not a well known VA number it’s for a specific person or dept. as this number was. It wasn’t about my spinal MRI per se it was about something else concerning picked up by the MRI it had to do with nodules on my thyroid and salivary glands. They wanted to biopsy them and they did and it wasn’t cancer so that was the end of that, however all of my PCP’s Mentioned hard swollen glands for too long to remember. They did nothing although I was told once that one thyroid blood test was always normal.
Ironies or ironies there’s been an odd history of what the VA doc calls “ anomalies “. So for instance I was being poisoned by my well water and I recall arguing with my doc constantly because he said there was nothing wrong with me except all illnesses were in my head. After a year of this arguing he calls me one day with good news/bad news They finally detected very high levels of ammonia in my blood which was making me blind and crazy as a loon. The so called “ good news “ was that he found out why it never showed up in my blood test. The VA process/protocol dictated that if liver enzymes were normal they through out the ammonia test. My question to the doc was this: if there was no ammonia test in the blood test would you not ask why not or where it was? He admitted that after a year of watching me go crazy he asked the lab and they informed him of their rules. He said he didn’t notice because he was expecting a red flag notification which never occurred because the test was never done. That may have been the first time he mentioned “ anomaly “ saying that most people with that high a level of ammonia in their blood would have it show in the enzymes.
I don’t know for sure but this has happened to me so many times I can’t say exactly. Although it may not be related I’ve always had what they call paradoxical reactions to medications Zoloft for instance should take two weeks to show effects. Within the first fifteen minutes of taking Zoloft ( on my birthday no less ) I was becoming Frankenstein’s monster and had to lock myself in my house for three days. I couldn’t answer the phone or the door or go out in public. Similar with Paxil but at least I wasn’t homicidal. But I had no appetite, my body temp dropped that my teeth were chattering and while in Fl during the summer I wore winter clothes and gloves and sat in the sun trying to stay warm. They finally told me to stop taking them when I didn’t eat for a week. I noticed in the article you posted that lithium was mentioned. I took that for a week and though I would never recover I became “ dumbfounded “ as I called it. My brain drained and I didn’t know anything I couldn’t speak.
Stress now triggers the brain fog, blurred and double vision and my pains are new and so bad I can hardly get out of bed in the am. I’m now recording it all because saying it seems to have no affect on the doctors.
My emotions are all screwed up too and guess what, all family and friends are staying away. I feel like the twin towers on 911: most people are running away. I need my hero’s like in the Army who would never leave a soldier behind. Hero’s run towards the fight everyone else runs away

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@theshewolf1

My neurologist took the sheet of paper with my questions and copied it into my medical records. My memory isn’t as good as it used to be but I am sick of others judging me and trying to tell me what to do. My life is a never- ending nightmare on some days but it doesn’t mean I am a child or be talked to like one. I have been independent since 18 so please stop treating me like I am an invalid.

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Sorry to hear about how you are treated. Read what I said about Hero’s in my last post. Sound like your experiencing that thing that happen to us when we return: everyone who wasn’t there tell you how to feel and to “ pick yourself up by your bootstraps “ if they only knew what that does to us inside maybe they’d just live you for being you! I’m here for you Twolf

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@theshewolf1

My neurologist took the sheet of paper with my questions and copied it into my medical records. My memory isn’t as good as it used to be but I am sick of others judging me and trying to tell me what to do. My life is a never- ending nightmare on some days but it doesn’t mean I am a child or be talked to like one. I have been independent since 18 so please stop treating me like I am an invalid.

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@theshewolf1 First, thank you for your service. Then, welcome to Mayo Connect, if you haven't been welcomed to our big cyber table, yet. We are a caring group who offers support and shares our experiences. I am glad you write your questions down – I do, too, and it helps me focus. You're lucky when a medical professional copies your questions! Those of us who have been through harrowing events like active duty and other examples, have to just shake our heads when people say "get over it". Our very core is changed and it takes a lot of effort to revert back to "normal", if ever.
Ginger

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@theshewolf1

My neurologist took the sheet of paper with my questions and copied it into my medical records. My memory isn’t as good as it used to be but I am sick of others judging me and trying to tell me what to do. My life is a never- ending nightmare on some days but it doesn’t mean I am a child or be talked to like one. I have been independent since 18 so please stop treating me like I am an invalid.

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@theshewolf1– I also welcome you to Mayo Connect. I have every single one of my labs results, ct scans and blood work. Anything that a doctor has in my file that I can get a hold of I have. After 22 years of lung cancer I have folders and folders. lol This way you can keelp track yourself and research any terms were not familiar to me. I became a better patient with this.
I agree, people don't stop to think how what they say can be very hurtful when they are just trying to help. Turning the question back on them might also be a tactic. Ask them how they would feel if that statement or question were aimed at them if they are seriously ill.
II was waiting in line about 22 years ago to check in with pre-op for my first lobectomy. The gal behind the desk asked who was with the gal trying to check in. The gal in the wheel chair said I'm a person and can hear you.
Maybe we all need to speak up more if walking away doesn't work. What do you think?

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