Dealing with Doctors Who Won’t Tell You Your Diagnosis

I was a nurse but due to my office abilities, was always made a secretary or office manager. One M>D> for whom I worked said: I do NOT send my patients to psychiatrists: generally, psychiatrists have THEIR OWN PROBLEMS that they want to "work through" and so, in med school, that is the specialty they choose. Not to help patients but to help themselves!!! You know what? I had a very low thyroid and believe me, the thyroid hits every little portion of the body with symptoms and complaints. M.D.'s will do tests and choose ONE positive response to work with, ignoring all the others. Finding a reputable Endocrinologist who had rather treat a patient with hypo or lyper thyroidism as opposed to putting the patient on a stringent diet (no sugar, etc.), they seem to think that if the just bide their time, said patient will be a diabetic and THAT IS WHERE THE MONEY IS!!! Thyroid complaints can often be treated easily IF ONLY the M.D.s would dig into books or ask other M.D,s for help with the problem; however, some are so d-----lazy and pretend to "be so busy with other patients, too" the poor patients suffers with many, many side effect from untreated thyroid problems. Have you see many diabetic patients who are slim and trim from having been put on a proper diet? Rarely. I cannot understand how some of these so-called M.D.s get out of first semester med school!! They cheat; they will get others to do their work....you name it.. Just so they get a DIPLOMA to hang on the wall with their name on it. IMPRESSION!! I had a terrible problem, caused from being over-medicated with antibiotics because "it looks like you have so-and-so and I ended up almost dead from dehydration and what seems like a million other symptoms and under psychiatric care. I will always believe that "nut-hatch" knew exactly what my problem was; yes, thyroid affect memories, the skin, the LIVER (elevated cholesterol) ;high sugar; high B/P and a patient gets a million pills to take that are doing no good. Yet, when practically begged to get better tests done or find a super specialist who does ONLY thyroid and not Diabetic problems, "old faithful: continues to do the same tests every time..T-3, T-4 and no more!! Well, there are physical signs on the bodies..the skin, hair, nails, etc. to check, but they never even look at the eyes (that used to be #1 on doctors' list to check...are they yellow, red, teary, itchy????? They do not give a hoot. Just do more tests and to heck with trying to CURE a patient because, once, medicine is being ruled by the BIG PHARMA and it trickles down thru their people who lobby Congress and medical committees in our U.S. Capitol buildings by what is called "pay offs". I dare anyone to deny that statement because we all know that M.D,s are directed by Big Pharma as to what pills to prescribe and it's a pitiful thing that the good doctors who are still out there, never see the patients who are being detained by some person who wears a long white coat and just plays at being knowledgeable about medicine. That is why so many people are turning to natural medications that are available OTC. I visited my "family doc" recently and he ordered me to stop taking ALL those probiotics and I have never given him a list of any one particular probiotic I have taken! He's stymied at my not getting better and my skin is not clearing up when he dares look at my spotty hands, but if he would just do some hard digging at research himself, he would soon see that he isn't helping me one bit. Yet, finding an Endocrinologist in this burg is like the old needle in the haystack. They either get "outta Dodge" and find a better place in which to practice or else skirt all issues. Yet, I drive over 50 miles to see this man who was highly recommend to me (and that's one way). Search for a good one? One who can cure? Almost impossible and, I add, the patient is the one who has to do all the assessments on good or bad.
And it is not done in one visit. thanks of the space.

The longer they take, the more money they make

Another reason is ,if they diagnose you they can't keep ordering tests which is a revenue builder for them. The longer they don't diagnose you the more money they make. They don't give a darn the stress patients go through not knowing what is wrong with them because they have very unhealthy consciences. They are souless vipers and we better realize they are real good at it.

Yea. My old PCP diagnosed me with depression and didn't tell me. He just started pushing antidepressants on me. No informed consent. No I think all your problems, even though they're physical, are depression. If he'd told me I would've moved on and found somewhere else. The drugs, which he told me would help so much, did absolutely nothing. Only made everything worse. I came in complaining of new problems. His responses were "I'm not concerned about that" to some and "it's just depression" to others. Turns out they were side effects. I didn't go to another doctor because all I ever had were bad experiences so I didn't think I'd get better service. No one could comprehend that maybe the treatment didn't help because it wasn't depression. He never asked what symptoms went away with thyroid treatment. It turns out what wasn't being caused by hypothyroidism was being caused by antihistamine side effects. Oh and no doctor figured that out. I'll never be able to trust doctors again.

I was diagnosed high functioning I wasn't told until I left therapy should I have been. black and white thinking yes I should no I shouldnt I'm out to lunch on this one I think most bpds will know what I mean

My bad - I thought this was a BPD-only article! Let me rephrase: "I love all the naughty/feisty patients on this board!" :)

I love all the naughty/feisty BPD's on this board, lol... There is nothing wrong with expecting to be treated as an adult by a healthcare professional!
Thank you Natasha Tracy so much for this article. I'm going to have to have this conversation with my therapist soon, myself. And I'm going to get a second opinion, as well. This article gives me more courage to do so.
If I have BPD, I want to know! So I can start treatment ASAP. I have read a lot about BPD and don't find the prospect of such a diagnosis scary. I am proud of who I am and what I've been through.
Knowledge is power!

It seems very cruel to withhold a BPD diagnosis of all diagnoses... The disorder is based after all on fearing disloyalty from the people you trust. What will a patient think when it comes out that their therapist of all people has been withholding a diagnosis for all that time? What will a patient think with it comes out that their own family has been withholding information from them? It seems like BPD's are being set up for a "perfect storm" in such a situation. Very cruel and degrading.

This may not be entirely relevant, but if I've been given multiple different (conflicting) diagnoses by different doctors, how do I know which one(s) are my actual diagnosis?

My psychiatrist withheld my diagnosis of BPD for 15 years. When I found out I told them they are all better off dead because I'm going to make their lives a living hell. Better believe I found a new doctor real quick and I laid down the law with him and reminded him that I may be crazy but I'm also very dangerous

Recent conversation with Psychiatrist
Me: I am worried about Bipolar diagnosis, and that I could lose my driving licence
Psychiatrist: Well you do need to tell them if you are on medication
Me: So, what do you think I have? What would be my diagnosis?
Psychiatrist: What do YOU think you have?
Me: PTSD and Bipolar is what I think. PTSD for last 6 years and Bipolar all of my life.
Psychiatrist: I don't think it would be in your interest to tell you
it is very confusing.... Why am I seeing a psychiatrist?

Natasha, you've done it again. You've hit the nail on the head, WHAM! First a therapist told me I have severe depression. Then I got treatment for my ADHD. The depression meds worked for a little while, but something still felt "off". Eventually, I lost the insurance covering the depression meds and so I went off them.
Somehow I've managed to deal with the depression, to "muddle through" and get to where I'm "okay", most of the time.
Now, when I was first dealing with the depressive symptoms, my Mom said she thought I might have bipolar. But I just refused to even consider it, so for years I didn't even bring it up with the doctors. A couple months ago I finally did... the doc didn't say anything as to whether or not SHE thought I fell somewhere on the bipolar disorder scale/spectrum/whatever-you-call-it. Instead she worded it like, "It appears you're having trouble managing your anger with the coping strategies you've learned in therapy, so I think we should consider a mood-stabilizer for you."
That was about two months ago. AFTER that unpleasant adventure I found out that sort of medication is supposed to be titrated up *SLOWLY*... Needless to say, the titration schedule she had me on was wayyyy toooo faaaast and I felt completely out of control, my temper was on even MORE of a hair-trigger than it was before, and I literally felt like I was turning into a monster.
So I called her up and I told her what was going on. I told her I wanted off this drug, immediately if not sooner. She tried to tell me that I'd reported severe mood-swings *before* starting the medication -- to which I told her point-blank what had happened to me on this medication was vastly DIFFERENT and it was NOT how it was before, but infinitely worse -- and after warning me that "the mood-swings will most likely return", she gave me a taper-off-the-meds schedule. Within a week I was back to what passes as "normal", for me.
So now I'm in the back-and-forth place of, "Oh, yeah, I definitely have some form of bipolar disorder," to, "No, those meds totally screwed me up, and they wouldn't have screwed me up if I had bipolar, so I don't have bipolar."
Ugh! What a road to acceptance, dag-nabbit. But I'll get there... eventually. In the mean time, more reading this cool blog and watching the Youtube videos!

None of this is helpful.....we need a written diagnosis for our insurance so we can live....we need some heat on this doctor, who is very arrogant and won't write things down. In his words"Thats not what I do!"

I've been seeing my psychiatrist since September 2013 (I personally have no issues with him), he's a decent person over all (we talk), I do the talking mainly (hence the reason I see him in the first place). I once had asked him in November and he basically stated that it's too early to tell (and from his perspective I can understand somewhat where he's coming from), and I also can understand where (the patient is coming from). I think it honestly has to do with you in general (the reason as to the why you must know), is the reason soly based on your need to know? For your peace of mind? Out of curiosity? Do you wish to state to people I have such and such? Or are you generally thinking you have one thing but wish to put your own mind at peace and have the Doctor state weather it is what you think it is that you have? Now from the Doctors perspective the same questions are running in his head at the same time, why does such and such care to know? Do they wish to have a pity party? Are they generally curious? Do they wish to validate a certain theory? Basically for myself once he gave me that response I never pursued that question again (I mean the meds are working for me, I know the purpose of the meds, google is your friend for this reason), and I don't need to stress the fact about thinking I have this, because the meds I'm on are stating as such for the time being (I don't really know), but in general Doctors are their to help us, not to get us so if you feel you can't trust your Doctor to do what's best for your health and mind that's when you should feel the need to switch Doctors but switching a Doctor over such a minute detail isn't honestly worth it, Just my 2 cents

Hi I've tried to get a diagnosis for years and have been to a number of health professionals. I've had the following diagnosis:
OCD, GAD, PTSD, mild depression, clinical depression, autism spectrum, dyspraxia, dyslexia. All the people I've seen have said different things and some professions have queried the diagnosis I've been given by other professionals. I tried again this year to get a diagnosis and went to get my notes (I had psychotherapy for over two years). At the time of having psychotherapy I had the diagnosis of clinical depression. When I got my notes however I saw something interesting my GP had recommended a psychiatric assessment but hadn't told me. I have long suspected that my GP believed me to have a mental health condition as he once randomly tested me eye movement. I've not gone back to ask him because I was annoyed that he wasn't straight with me. I have however recently gone to another GP as I have a problem with communicating with people; sometimes when I meet with people I feel I have nothing to say and just sit there like a dummy. This inability to say anything affects my ability to gain employment, have a romantic relationship etc. I also have a problem with memory (e.g. not remembering certain words). I asked the doctor if the memory problem and the problem talking to people could be related. The GP basically sent me away because at 30 odd years old I was too young to have anything seriously wrong with me and I looked healthy. She didn't even want to hear how it affected my life.
Sorry for the long post I have a few questions:
Should I go back to the GP who suspected that I have something wrong with me to get a diagnosis or should I find someone else?
If someone else how can I get them to take me seriously (it seems you have to be suicidal before anyone takes you seriously!).

I have never heard of this. I can't imagine a pdoc just sitting there, withholding information on purpose. In this case, I think it's pretty clear who truly has the issues.
Treatment should always be about two-way communication. A pdoc/therapist who does not communicate with you - ABOUT YOU - is unethical and shouldn't be trusted.

Diagnosis is so important but doctors often are unsure if they got the diagnosis right. It is such a grey area. I has 'diagnosed' as bipolar but the doctors/psychs don't appear confident that they got the diagnosis right. They avoid saying that I'm bipolar. I question the diagnosis too.
It is stressful to not have a clear diagnosis. I have been struggling for so long and the lack of clarity messes with my head. I would like to be confident that the diagnosis is right, so that I have more control and can do what I can to deal with it. I am more comfortable with a label for my condition - gives me an explanation and more power to do something about it. Knowing for sure whether I have bipolar makes me feel more a part of the bipolar community. Sometimes I feel like I don't fit in because I feel like I may not belong here. Yet I don't feel like I belong in the non-bipolar community either. Feel like I don't belong anywhere

My understanding is that the most important part about a diagnosis is for billing purposes to tell insurance and that some practitioners are a little bit more flexible on labels, especially considering a lot of meds can treat variety of disorders nowadays--is it different in Canada?

To keep secret any mental illness from patient exhibits tremendous issue. If this secret hold the psychiatrist who medicate respective patient the situation grow up most compassionate and counterproductive as well. Indeed, the process of explication to any mental disorder indicates as crucial prerequisite on satisfying treatment to pertaining mental disease. Psychiatrist, who hold secret mental disorder from its patient makes great professional and ethics mistakes, because damages the therapeutic process and ignore the dignity of patient with mental problems. Beside this antitherapeutic course, unknowingess of psychiatric entity on the patient side disturbs much more patient with many unpredictable outcomes. These and others bad consequences of this malpractice require immediate elimination of habit of non-forthcoming to oneself mental illness to respective patient.

The doctor is doing this for a host of reasons but without sounding conspiratorial, they are doing it for (1) They believe their propped up status gives them the power to protect themself at all costs. For one they don't believe in or suppress cures. They don't want you to know because they don't want you to confront them or yourself abou what you can do to help yourself or the more serious issue- that you're thre because of your parents or whatever and there is no issue on your part but whoever brought you there. So I forgot the second reason but it's disturbing that doctors are even allowed to addres mental issues with their track record of bumbling ineptitude, fraud, and even criminal actions of causing known harm on a massive scale. What's more they defend it. Greed or money is their source of enablement and they are just now realising in this internet age they have no defense from truth.

this author is rather smug. I have had dozens of diagnosis over the last 30 years or more starting with paranoid skitzophrenia going thru the skitzo classes till they used up all the manic depression diagnoses and going back to who knows what all it really does is justify the drugs they prescribe. in my case for the last 25 years the neuroleptic has been the same and the diagnosis of the week just means the drug salesmen were there before me that day.

I agree a 1000%, Tracy!
The doctors are working for YOU, NOT the other way around, we are grown adults who can make our OWN choices, and you're right it's NOT their call to decide 4 us "If it makes us upset" Uhhhhh, as adults LIFE can make ANY person upset diagnosis or not, and it's NOT their right to play all powerful daddy to people who are not their own offspring!
I, too, had this experience twice, and they gave me the same b-----it answer I am reading about here.
Now do you see why so many people shy away from psychiatrists, Tracy, we were NOT trying to give you a hard time a few months ago, but simply make valid points of all the issue and frankly s--t it has w/ it.
Puddytat

A diagnosis is permanent and has a prolonged affect on the patient years after the relationship with the professional ends. Employers in many lines of work require a background medical check which can prevent the patient from pursuing a particular career. I can easily understand why the practicioner was hesitant to provide a diagnosis until a further scope of the patient is known and understood. Instead of blasting them in a blog, how about appreciating their concern for the patient's future?

In my practice my motto was that a diagnosis was only as good as the treatment plan it generated. As to other doctors who don't share this process with their patients I think they are afraid of not being consistent with other doctors.

A suggestion for everyone. Each time I go to a doctor I request a copy of the doctors records for that day. By law he/she is required to give it to you. There should be no question as to the diagnosis as it will or should be on the record. Keeping records of your visits will not only keep you updated but you will often find incorrect entries which you can then call in and correct.

It's helpful if he doesn't give you a diagnosis officially - for instance, perhaps we could just NOT write that diagnosis you think I have on the insurance paperwork so that I am still eligible for life and health insurance in the future. But if he's writing a dx on the insurance report and not telling you, then it's inexcusable.

It's a funny thing, but when I was diagnosed in early 2000 with bipolar, the doctor didn't specify to me whether it was BP I, BP II, or BP NOS. I didn't know enough to ask, and it just didn't occur to me to do so until much, much later. Then, doing my own research, I finally concluded that I had features of both BP I and BP II, so I presume that it is NOS or something. I've had so many doctors since then that I could not count them, and I doubt if my original records are locatable amongst the hundreds of pages of notes taken over 12 years. I doubt if I will ever ask.

Docs want you to not give up hope, probably fearing that if you knew how bad your illness is, and the real prognosis, you might suicide. I was kept in the dark about my diagnosis while the results of notes, tests and records I wasn't allowed to see went right to my disability insurance carrier. This had the result of the insurance carrier knowing my situation much better than me, and that my condition was much more chronic and hopeless than I was led to believe. As a result the insurance carrier - with full knowledge - offered me a very low buy-out offer of my lifetime benefits (about 5 years worth) while the docs said I'd be fine and back to my high paying job in maybe 3 more years -- just don't give up hope - or be clued in to your real diagnosis (Complex PTSD/DID I found out much later). I had to decide to accept or decline the buyout offer without full knowledge of my condition and diagnosis; based only on the doctor's words of hope - that were based on their fear that I might give up hope and do myself in and they might find that uncomfortable. I accepted the buy-out more than a decade ago and now I face serious financial problems and realize I am not ever going to function well enough to get a regular job again (getting too old now as well), and, while much improved, am still disabled and unable to earn a living. Time's running out. Hello street life. Thanks, Doc, for looking out for me!

My doctor also doesn't want to "label" me for some reason and I do find it a bit frustrating. For years my diagnosis was major depression and generalized anxiety but when sypmtoms began changing to be more in line with bipolor she changed up my treatment to be more typical for a mood disorder and its been really helping. I'm assuming that means my diagnosis would be bipolor 2 (just based on my own research) but I do find it strange that she won't label me.

I only found out a diagnosis of Borderline Personality Disorder during a gp visit as I was able to read his copy of the letter upside down, a handy skill as it let me challenge the diagnosis and get it changed after having read up on it. Yes it did some harm when I found out but ultimately it put me in control.

How about not being told my diagnosis 45 years ago, leaving me in the dark for a very long time. Add to that, that in 5 years worth of work, I did not receive the medication I needed which was anti-depressants. What was depression? I did not know and could not ask for what I did not know about. Talk about idiots. That was the kind of therapy 45 years ago. Their talk therapy was worthless. They were worthless. I will spit on their graves.

There is also always the possibility that they just don't know. I know that when I was battling my issues, the terms 'schizophrenia, bipolar disorder, dysthymia, bipolar 2' all came up, but only after I poked and prodded. Most of the times, after prodding, they would simply say that there weren't sure and didn't want to risk giving me a diagnosis without being positive.
The most empowering answer I ever got was when I was an in-patient in a psychiatric hospital for major depression for three months. I asked my psychiatrist 'do you think I have bipolar disorder?'
He responded with 'do you?'

My doctor was reluctant to give me a "label". I was a person, not a diagnosis. I gave him that, but felt more able to assist and understand myself after getting a name that I could study and try to control. Well, control was a dream, but with knowledge, I could look back and sometimes see where I could have handled some things better. I'm still discovering insights (over and over), but repetition does sometimes lead to learning.

Even sadder is a Parent who won't tell you her diagnosis...even when 2 of her own children and one grandson affected. And this is from a Parent who is now 89, I am 52...sibling 58.
Sadly, in addition to the diagnosis, there is a lot of false pride and denial. I understand denial a big part of the illness.
Thank goodness for NAMI and good friends and supportive husband.

In undergrad I had a favorite doctor. She was a recommendation by a nurse friend who worked with her, & I loved everything her, except... She had a bad habit of giving me meds without ever telling me what was wrong with me or why I was taking the meds. I had to make it a point to ask what the diagnosis was, & she would tell me. For her, I don't think it was a conscious decision on her part not to tell me, I think it was just an oversight due to having a very busy practice. Of course, these also weren't big diagnoses because the biggest issue I had while seeing her still remains unsolved more than 10yrs later. I'm a medical mystery!