A little over a year ago my NP became obsessed over my thyroid meds. When I tried to explain about the skewed testing (see FDA, ATA, Endo. Soc. warnings on biotin) she not only ignored all the warnings but startd putting false info in my medical records. Any time an advocate tried to reason with her she took it out on me in a variety of ways such as lying, saying I did & said things that she actually said & did. Put in fake documents, tests & blood draws I did not have. NO ONE believes me but they take her word for it. I have witnesses to the truth but no one will even talk to them & now I have been told to back off or more will be added & NONE of my meds will be refilled. Does this sound like quality care? What can 1 do if the governing agencies won't even investigate? I am 72 & mentally healthy but reading what she wrote would make you think I am full blown demented.
It's always okay to get a second opinion.
Years ago I was mis-diagnosed when presenting classic symptoms of MS. I was told that it was my weight (the go-to my whole life, and I am not even close to being THAT fat). I was also told that, since I cried in her office over having felt terrible for months with no real diagnosis other than "lose weight", she said "that's it! You're depressed"! and gleefully wrote me a prescription for antidepressants. After further months of nothing changing, I was finally referred to a neurologist for some of my symptoms. One MRI later and I got my diagnosis. I'm still fat 17 years later but I feel pretty good since I am receiving proper treatment.
How does 1 prove a document is false? Time lines, witnesses, conflicting dates, but if the people who are supposed to investigate won't what else can we do? From what I can gather this appears to be a localized problem but not the only locale. Still, I need my meds. What is so baffling is this is over .12 mcg of levothyroxin that I had been stable on for years.
In my own personal healthcare, a couple of NPs were able to solve problems that whole teams of doctors couldn't. Both times it was kind of funny how they communicated with me. They would wait for the doctors to leave and then quietly suggested what I should do. Both times, they saved me from surgery which is what the doctors ordered.
Deliberate in legal terms infers intentional, and/or premeditated. You may conclude that this occurred, but what proof do you have?
That's something to consider if you decide to take action against the doctors. You could already be bordering on slanderous charges if you go public on these issues, including involving state Boards.
It also says I yelled stuff at the provider that I don't even know how to pronounce! It simply did NOT happen. How do you prove something didn't happen when the investigators don't investigate? I am a nobody. Just an old woman who lives out on a mt. in a 'mother-in-law home. Nobody. Why do I need all this hoopla over 12 mcg of levo????????? My labs SAY I need it.
Have you considered talking to a psychiatrist, preferably one with geriatric experience?
I ask this NOT because I think that you're mentally ill, but because in my experience, Geri Psychs are the last specialty out there who actually take into account the WHOLE patient, body, mind and soul.
Just as I would not accept an NP's diagnosis of a serious neurological disease, I would not accept that dx of depression from anyone other than a psychiatrist.
Do you have the means to travel to a nearby city to get better, more objective medical care?
I am surprised if this has happened in the USA with no controversy and no ability to opt out. Is there no way you can go to a new doctor without providing contact detail for all your old records?
Has that changed?
Roxy, if the doctor you went to for a second opinion got records from the NP illegally, you may need to consult with a lawyer and threaten legal action. You should not be treated with so much disrespect. To be honest I've never seen such blatant disregard, even while working in healthcare.
State boards will NOT investigate at the patient's word. They ALWAYS take the provider's word over the patient. Thus my efforts to get help out of channels. Thanks for your response.
These advocates? Might they recommend a practioner they are happy with, and recommend you to their care?
Generally the tests for hypothyroid are very cut and dry. And the amount of medication prescribed is as well. I would love to have more information on exactly what the problem is.
Are you satisfied with the results of the tests or do you feel they are mistaken?
If they are "mistaken" were they repeated when you asked that they be?
Are you satisfied with the medications you are taking?
How long have you been hypothyroid and was there ever a time that your condition was in good control. Especially for women, hypothyroid condition after our 40s is VERY VERY COMMON, and usually very well and easily controlled. Of course if you go online you get all kind of squirrels falling out of the trees about take this and don't take that, and every possible thing that could ever happen. While I love the internet it isn't always a good thing.
You mention in one of your replies "mental condition". May I ask you what you mean by that and what it would have to do with your hypothyroid problems?
You mention caretakers. Do you have live in caretakers, or caretakers who work for you? And are they who you are using as advocates when you visit the doctor?
You mention everything being in the cloud. The cloud is just another name for everything we do on the internet, and yeah, it is all there, including whether or not we are on this forum. There is nothing that goes through the keypad and has "enter" after it that isn't somewhere stored. It is common, when we see another practioner, to take our old records with us. Or to allow access.
Wishing you luck going forward and sorry you are having all these problems and issues. My Mom had an old adage that, with time, most things work themselves out. I have found it true, but not always.
Yes & no. Advocates both within my community & out. My insurance advocate worked for & with me for several weeks until they realized she was retaliating then they backed out & suggested other options.
My insurance has coverage in my area & as far as I know 1 other. When attempting to change insurance I find no others (I'm told) are here. Makes no sense to me! As for the recommended providers, there are NONE! The ones who take my insurance (medicaid & medicare) are full or too far away for me to attempt. The 16 mile ride I did take has left me with debilitating problems.
As for the tests, yes. I was on multiple vit/minerals + others she was telling me to use. Vit B is biotin. She ignored the warnings from the FDA,ATA,Endo people as well as nthe warning on the bottom of my lab report & changed th diagnosis to hyper in stead of hypo. (See the ATA article). The previous labs showed me to be low but I had told her the endocrinologist had said my labs are off & I referred her to the FDA as I was advised. I was not rude about this. This is the ONLY discussion there was other than her saying she was going to make my labs normal. When I asked for a blood draw while I was off my supplements she refused & dropped me saying I was non compliant. I finally got the new doctor to order the blood draw while I was off the supplements & my labs were back into normal range in all areas. I was on the 124 mcg for that blood draw. When I asked him to restore the 124 which I had run out of, he yelled that my concerns were "insignificant, irrelevant & moot". He told me he would not give me back my needed dosage inspite of the data that showed I needed it & that was FINAL(shouted). (Previous comment) I had been stable on the 124mcg for around 10-15 years & was stable & doing well before she became obsessed with it. I was diagnosed in 1970.
I am not allowed to write my own script or maybe I would. As I said, it appears there really is no course of action I can take any more. But I do appreciate the efforts & time everyone here has put in.
As for the meds I am taking. I wanted to quit 1. That one he increased X3. The other 3 he reduced so now my conditions that had ben under control are now out of control. So, no.
The 'mental condition'. According to her & what she wrote in my medical records, I have major depression & rfise to take my zoloft. NONE of which is true & I have NEVER been prescribed Zoloft. I refuse to be educated. I refuse to have blood tests, I yelled at my provider saying really stupid stuff some of which I can't even pronounce & threw a large ball during my intrview to my large dog. Absolutely NONE of that is true. But a large part-except for the dog which I don't have-she herself did. & again. It should not have anything to do with the thryoid issue other than what 1 advocate said: "she is discrediting you."Another said " When she introduced the mental issue she assured no one would believe you."
Again. I appreciate your words. It would be easier to let time take care of it but having to try to survive let alone function on the 112 mcg is a real problem. All I really asked for was to have the correct dose of levo. In 4 years I saw this NP 3 times. It isn't like I want someone out here every couple weeks or months.
No. My caregivers are only witnesses. I had other professional people trying to help. I thank you all.
I have heard of what OP is talking about when it comes to health records. I do think there is some controversy over how private it is.
Being homebound seems to be your problem. And maybe excess to specialist. Where I live I had to take Mom to an Encro 30 min away. Some of the others didn't take Medicare. Not all practises have NPs that do house calls. I think the problem is you know too much and the NP feels intimidated. Or is like u said, a narcissist.
I am not a nurse but I worked 7 years with them. My daughter is an RN. I fought to get the hospital to keep my Mom because something was wrong. She took a 180. My daughter walks in with her scrubs on and says the same thing I did and they listened to her. It was found that the antibiotic she was given had penicillin which Mom was sensitive to. If they had sent her to rehab with the same antibiotic prescribed, she may have died. Her breathing was labored and my daughter thought she was on deaths door. Change of antibiotic perked her right up.
When I told Moms PCP what happened, he said our health system is going down the drawn. We need to be proactive but then...no one listens.
Sorry, I have no answers. Seems like you have advocates and no one is listening. Moms Encro was so nice. Yes, he listened.
Does anyone actually know the situation, rather than guessing? Or know how to find out? This OP can’t be the only one who would like a true second opinion.
In preparation for cataract surgery, I was told to complete, online, medical records for the surgery center. I decided to explore the privacy issue, even though I don't as a matter of course provide that information online, as I have already prepared med histories which I take for medical appointments.
This was the first time that data entry directly into an online portal was mandated; in the past I've just refused and it hasn't been an issue b/c as noted I have my own prepped records.
The portal identified the entity managing the portal for the medical records uploaded, and required an indemnification, hold harmless and defend acknowledgement by me before I could even enter the portal. Obviously I refused.
There's no way I'm going to agree to defend an entity that's merely hosting records. I've negotiated indemnification clauses and know the liability they create, with "defend" being the operative word that could easily bankrupt anyone who is forced into defense of a lawsuit.
I did research as well on the "guardian" of the records, the company that stored the uploaded records, learning that 2 of the members of the company are venture capitalists. Big red flag.
I researched the venture capitalists' own company, learned that it deals with medical information, leveraging it, and providing "SOLUTIONS" to individuals (and med practitioners) for various nice sounding goals. NO medical personnel were in management or ownership positions of this company. Bigger red flag.
There were also references to "data silos" and other tech references in terms of access to medical data.
I contacted my surgeon's office and advised that I refused to sign the pre-operative medical records release required to upload data. One of the surgery boarders agreed to fax my medical history to the surgery center. Problem solved.
But it was raised again by surgery staff on the date of the surgery; I again refused. The operation was almost cancelled while we politely dueled over the issue, with an understanding physician agreeing that I was justified in my concern. Although it wasn't a solution, he noted my position in the records.
Unfortunately, I had/have no control over the surgery center itself's action in uploading the records faxed by my surgeon's office to the same venture capitalists' cloud storage.
For the next surgery, I wrote a letter stating my position and asked that it be included in their files. I still have no control over the data once the Surgery Center uploads it, and in researching T & C, I could find none by which the cloud storage company agreed to be bound by HIPAA.
And I realized where robocallers might be getting their information that I might be in a population group that needs medical devices, or this or that that affects people in my age group.
Anyone who thinks that your medical records are safe needs to put on a Sherlock Holmes hat and do some sleuthing. Do you really think that hospitals maintain all their own records? That they have the funds, staff and technology to maintain cloud hosting? It's contracted to cloud hosting companies. And who owns those? Have you ever researched that?
Do some investigating to find out what company really manages cloud storage of your medical practitioners' medical records, then research those companies, if you can actually get the name of the cloud host from your practitioners.
If you think the HIPPA provisions protect your data, ask yourself this, or ask it of your med providers:
1. Does the cloud host company sign an agreement with med providers to abide by HIPAA?
2. If not, why not, and
3. If not, what protection is provided by the host company of your medical records?
4. Or ask your medical provider to provide you with the documentation it signs with a cloud host. I doubt that any medical office/hospital would give that to you.
Can anyone see the contractitions here? Or false info? I am supposed to sit quietly while my health is destroyed. I told them I KNEW my records had been mixed up with someone else's & I have proof. Again, no one will even look & I was denigrated because of this. & now it is all in my e-records. Does NO ONE see that this is wrong? I said I wouldn't pursue this but obviously I didn't follow thru. Forgive me if I am annoying. There HAS to be others out there that are being mistreated in this way! I can not possibly be the only one! Can I?? Don't feel you need to respond to this. But thanks for your time. I will try to sit quietly.
I think you've "hit the nail on the head." Most people are NOT familiar with indemnifications clauses and how volatile they can be in a situation in which someone is notified that he/she has to defend based on such a clause.
I don't think I did either until I became heavily involved with contracts.
Roxyann,
I don't know what to suggest other than try to move to a more populous community, but that's obviously not something that's easy to accomplish. If I recall correctly, I read somewhere that you're in a mountainous climate, with probably limited medical facilities and not the best at that.
I wish I could be of more help, but I don't know how I can. When I've run across poor medical treatment I have the option of many other practices in the same field of medicine, but that's not the case in a mountain community where there are probably limited choices.
Do you have any family outside the area with which you could stay for awhile?
So much I didn't put on here & it wouldn't make a difference. People here are so kind. I thank you all.
The solutions offered so far have all been exhausted. This is a warning: this may be a long post & it is actually a SHORT version!. Please forgive me.
Back in Nov. when th NP 1st started her 'treatment' I had been stable on 124 mcg for at least 10 years. When she announced she was reducing my dosage I told her that my tests were not accurate as per the diagnosing doctor. I also referred her to the FDA statement that thyroid tests are not accurate. 1 1/2 months later she withheld my meds completely & nearly killed me....Once I was back on my feet on the correct dose-which she gave back to me I called the insurance co & asked for a list of available doctors. They asked why I needed to change & I told them. I did this about 3 times before I realized the NP was retaliating. I then was put in contact with the Ins. liaison/advocate & he spent several weeks trying to reason with the NP. EACH time she retaliated. I had NO idea that when I called & spoke to the insurance co that they reported to the NP! That was why she was retaliating. I had no clue but once we figured it out I worked on my own attempting to find a new doctor. There were none available who would do house calls & took medicaid. None. (At this time my advocate started pressuring me to file formal complaints with medicare & medicaid. They refused to investigate.) I dragged my feet until after the NP dropped me because ALL the organizations report back to the offending provider.So I was stuck & she could do whatever she wanted. (& for the kind person who mentioned house calls were a problem. Yes. You are correct.) Once I was back on the 124 mcg I was improving & was nearly back to where I had been when she dropped it again. She had ordered 3 blood draws which I did but at the time, even tho the biotin warning was on the lab results I still did not know about the reason for the bad readings. Before she ever ordered the blood draws she had accessed the previous tests (this is 1 place where it shows HIPAA no longer exists) & determined I was hyperthyroid & that is what she acted on.I trusted this NP. Yeah. Really dumb. She KNEW I was on Centrum supplements & she was ordering me to take large doses of D & B vits. I refused the overdoses but in an effort to get along I did take the D & B. I did not need it but I took it to appease. So she KNEW I was on a large amount of biotin...& ignored it. I still did not know about the biotin & blood tests. When she dropped it again I was with home health as they did the blood draws. THEY did not know about the biotin tho it was discussed. NO one including myself thought to look it up...What HH did do was set up a telemonitoring system so we could document the decline in my health as the dosage was reduced. I had to quit at 112 mcg because my heart & temp had declined seriously, then I worked my way back up to the 124 where I started improving again....Mind you, this is being done to a 72 y/o woman. At the end of the monitoring HH again tried to reason with her but also asked for a blood draw without the biotin. The NP refused it. Then the NP sent me a backdated letter dropping me for non-compliance...I was in trouble & knew it & started looking for...uh...those squirrels Alvadeer mentioned(!) & also looked up biotin warnings. I was shocked. This info had been out since 2016. Look it up for yourselves...jump forward...A doctor who HAD to leave his former clinic became available so I went to see him. I asked for a blood draw without the supplements I was taking. He dragged his feet for a month & then reluctantly ordered it. My results were back in 'normal' range. But he refused to give me back the 124 even tho I was on it at the time of the draw......& here we are.
What is so disturbing is this NP SHOWS many mental health issues. & they continue backing her up & even now she is adding HER OWN SYMPTOMS to my medical records. So sorry for the long story. But now you have a better pix. Thanks to all of you.
I believe that medical personnel on the NP or PA level need to be registered at a state level, and sometimes on a national level. I would research to determine your state's requirements for RNs, NPs, PAs, and physicians to find out how and where they need to be registered.
Then determine the method for filing complaints against medical practitioners.
That route might get someone involved enough to review their records. And I'm assuming that you've documented your complaints against the offenders?
I don't recall - do you have actual copies of the medical records in contention?