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?

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?

REPLY
@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?

Jump to this post

Thanks Teresa, Most VAMC’s are closely facilitated with generally great medical facilities. As an example two that I have used are near or across the street from Duke and Yale. There is a strange sense of confidence until I realized that the personnel from these wonderful medical facilities are employed by residence and some have supervisors that they consult with, sometimes while they leave you waiting in the exam room. So the so called confidence is a false confidence because they encourage the residence to go back to the room on their own and do what they are being thought what doctors do. Furthermore after a few close calls I almost had a miniscus surgery from a very confident doctor who told me that I would be his first which still almost happened except for an emergency in Florida with my Dad that I left to be there and cancelled the surgery. That was almost 10 years ago and I still haven’t had the operation but still walk about 5 miles a day and rarely use topical treatments to sooth some pain.
At Yale I was an in patient with stomach pains. After a few days of IV and laxatives I was felling much better. In walks a very tall attractive doctor with a pack of students following her. After greeting me and asking how I was feeling she proceeded to talk with the students: Mr S presented in the ER a few nights ago…. I felt like a cadaver but when she told the students that I was “ a classical case for gall bladder removal “ I interrupted and mentioned that I lived in California for 15 years and I’d like a second opinion for an alternative option. There was this brief but pregnant pause as she turned to the students not to lose a REAL LEARNING EXPERIENCE and told them that they will likely run into people from California who always have unusual offbeat ideas about how to doctor. In my mind she turned the pack around and walked them out of the room. She did however wish me “ GOOD LUCK “ I honestly think that wishing a patient “GOOD LUCK “ is thought in medical school. And if you think about it “ LUCK “ itself is a word that goes against the “ SCIENCE OF MEDICINE “ unless of course you get your medicine from a Native American medicine man or snake salesmen, or any other number of “ quack “ which is originally spelled kwak short for kwakzalver which is Dutch for a person who practices with home remedies. So hot tea with honey, lemon, and a shot of whiskey is quackery as are any of the remedies Grandma used give you if you were sick.
Of course I’m creating another epically long post talking around your suggestion which I really do appreciate Teresa and I do not want to discourage others from telling me what they think or know. Obviously someone might know something that the traditionalist doctors don’t know or certainly they would not practice. I had one person recently tell me to eat caviar because it is very high in vitamin D. I’m trying it even though I recall trying it in the past and I wasn’t an immediate fan.

I did have a very interesting conversation with an administrator at Cleveland clinic. She listened to everything that had happened and directed me to a doctor who had a special interest in the importance of Vitamin D
I found a doctor who now wants to see some of my records but he also wants me to write a narrative of what’s been going on with a time line. I think he found the right person to write “ a narrative “ 😃 So we’ll see where this goes. BTW, I still have my gallbladder
Thanks again Teresa! I really appreciate your willingness to reply.

REPLY
@stuckonu

Thanks Teresa, Most VAMC’s are closely facilitated with generally great medical facilities. As an example two that I have used are near or across the street from Duke and Yale. There is a strange sense of confidence until I realized that the personnel from these wonderful medical facilities are employed by residence and some have supervisors that they consult with, sometimes while they leave you waiting in the exam room. So the so called confidence is a false confidence because they encourage the residence to go back to the room on their own and do what they are being thought what doctors do. Furthermore after a few close calls I almost had a miniscus surgery from a very confident doctor who told me that I would be his first which still almost happened except for an emergency in Florida with my Dad that I left to be there and cancelled the surgery. That was almost 10 years ago and I still haven’t had the operation but still walk about 5 miles a day and rarely use topical treatments to sooth some pain.
At Yale I was an in patient with stomach pains. After a few days of IV and laxatives I was felling much better. In walks a very tall attractive doctor with a pack of students following her. After greeting me and asking how I was feeling she proceeded to talk with the students: Mr S presented in the ER a few nights ago…. I felt like a cadaver but when she told the students that I was “ a classical case for gall bladder removal “ I interrupted and mentioned that I lived in California for 15 years and I’d like a second opinion for an alternative option. There was this brief but pregnant pause as she turned to the students not to lose a REAL LEARNING EXPERIENCE and told them that they will likely run into people from California who always have unusual offbeat ideas about how to doctor. In my mind she turned the pack around and walked them out of the room. She did however wish me “ GOOD LUCK “ I honestly think that wishing a patient “GOOD LUCK “ is thought in medical school. And if you think about it “ LUCK “ itself is a word that goes against the “ SCIENCE OF MEDICINE “ unless of course you get your medicine from a Native American medicine man or snake salesmen, or any other number of “ quack “ which is originally spelled kwak short for kwakzalver which is Dutch for a person who practices with home remedies. So hot tea with honey, lemon, and a shot of whiskey is quackery as are any of the remedies Grandma used give you if you were sick.
Of course I’m creating another epically long post talking around your suggestion which I really do appreciate Teresa and I do not want to discourage others from telling me what they think or know. Obviously someone might know something that the traditionalist doctors don’t know or certainly they would not practice. I had one person recently tell me to eat caviar because it is very high in vitamin D. I’m trying it even though I recall trying it in the past and I wasn’t an immediate fan.

I did have a very interesting conversation with an administrator at Cleveland clinic. She listened to everything that had happened and directed me to a doctor who had a special interest in the importance of Vitamin D
I found a doctor who now wants to see some of my records but he also wants me to write a narrative of what’s been going on with a time line. I think he found the right person to write “ a narrative “ 😃 So we’ll see where this goes. BTW, I still have my gallbladder
Thanks again Teresa! I really appreciate your willingness to reply.

Jump to this post

Hello @stuckonu

In my previous post, I suggested that you see an endocrinologist. As you did not mention this, I wanted to check with you again. These specialists are very good at putting together hard to diagnose problems.

Have you seen an endocrinologist?

REPLY
@hopeful33250

Hello @stuckonu

In my previous post, I suggested that you see an endocrinologist. As you did not mention this, I wanted to check with you again. These specialists are very good at putting together hard to diagnose problems.

Have you seen an endocrinologist?

Jump to this post

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?

REPLY
@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?

Jump to this post

@stuckonu I'm not comfortable with the idea of taking that large of a dose of Vit. D without a physician's approval. Please talk with your doctor before increasing the Vit. D.

A problem with the parathyroid, hyperparathyroidism, can cause low Vit. D levels along with other problems. Here is some information about hyperparathyroidism (please remember that the parathyroid is a different gland than the thyroid gland even though they are close in proximity).
https://www.mayoclinic.org/diseases-conditions/hyperparathyroidism/symptoms-causes/syc-20356194

REPLY
@hopeful33250

Hello @stuckonu

In my previous post, I suggested that you see an endocrinologist. As you did not mention this, I wanted to check with you again. These specialists are very good at putting together hard to diagnose problems.

Have you seen an endocrinologist?

Jump to this post

PS
I want to attempt a short reply. Tell me how you think it works
T: “ Have you seen an endocrinologist?”
S: “ No “

How does this work? I read every word that you wrote and I can see/understand how and why you selected the words that you used and it is indeed very efficient in informing me what your wrote previously and noted the part that I did not reply to. So I ask myself if I can read and reply in a similar way. The answer is I don’t know if I can read and reply in the same efficient and effective way. I’m wondering if I can’t ask someone to help me break things down so I can see read and learn from another persons POV

Notice how I took a short direct reply and elongated it? LOL maybe I can blame it on the low D! It is possible ya know

REPLY
@stuckonu

PS
I want to attempt a short reply. Tell me how you think it works
T: “ Have you seen an endocrinologist?”
S: “ No “

How does this work? I read every word that you wrote and I can see/understand how and why you selected the words that you used and it is indeed very efficient in informing me what your wrote previously and noted the part that I did not reply to. So I ask myself if I can read and reply in a similar way. The answer is I don’t know if I can read and reply in the same efficient and effective way. I’m wondering if I can’t ask someone to help me break things down so I can see read and learn from another persons POV

Notice how I took a short direct reply and elongated it? LOL maybe I can blame it on the low D! It is possible ya know

Jump to this post

Great try on being more word-efficient, @stuckonu! Good work.

Let's try it again. Did you read the information on the link about hyperparathyroidism? Did any of the other symptoms, besides the Vit D level, ring a bell for you?

REPLY
@hopeful33250

@stuckonu I'm not comfortable with the idea of taking that large of a dose of Vit. D without a physician's approval. Please talk with your doctor before increasing the Vit. D.

A problem with the parathyroid, hyperparathyroidism, can cause low Vit. D levels along with other problems. Here is some information about hyperparathyroidism (please remember that the parathyroid is a different gland than the thyroid gland even though they are close in proximity).
https://www.mayoclinic.org/diseases-conditions/hyperparathyroidism/symptoms-causes/syc-20356194

Jump to this post

T, maybe one of the problems with the long replies is that things get missed. I did say that the doctor sent me a letter along with 50 k if D2 ( quantity 13, one a week until gone. I also mentioned that he did not include a follow up blood draw. I’ve sent him a “ secured message “ on our in house system similar to the charting systems that are very popular these days in most hospitals
( my chart ) his nurse wrote back informing me to go to any VA facility and there will be two orders in there: one for a D draw and another for a B12 draw.
I’ve mentioned to them that they do not “ keep a finger on the pulse “ which is so sadly true that I wonder if pushed if it wouldn’t be seen as a form of malpractice. Not that I would do that but how does one get the attention of those who are not doing proper follow-ups. Just saying….

REPLY

@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.

REPLY
@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.

Jump to this post

Great ideas, @rosemarya. Great suggestions for organizing a communication plan.

REPLY
@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.

Jump to this post

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.

REPLY
@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.

Jump to this post

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?

REPLY
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