The case for getting your own med records!

Hello sisters. I have had a few weeks off the board, but felt compelled to pass this along. I had to switch insurance to Kaiser recently. Asked my previous gp to forward records to Kaiser and for a copy for myself. Well, the copy for me cost $45, but it was worth it.

The "oldies" here know what medical h*** I've been through. For the the newbies who don't, I have had massive medical probs since my hyster. Saw a gazillion specialists. There was nothing wrong, said the drs. Except, finally, after I called them I found I had 2 leaky heart valves and enlarged heart. Might explain the racing, thudding, palpitating heart...

Anyway, I just got those records and I know they aren't complete. I really wanted a copy of the echocardiagram showing heart stuff and I had to call them to get it especially faxed to me and given to Kaiser. Guess they thought Kaiser didn't need to know results of echo?

Here's what I discovered about test results (and these are just the few I received, not the whole thing) and what I was NOT told:

*I have a moderate hiatal hernia (explains swallowing, tummy difficulties?)

*I have moderate left ventricular hypertrophy (the enlarged heart-it's already moderate?) along with mild mitral regurgitation and trace aortic regurgitation.

*Then there's mild diverticulosis (explains bouts of diarrhea?)

*My abnormal pap smear has someone else's name crossed out on the top and my name written in. I am a 21 year old, post menopausal female according to that, so who's pap smear is it (I'm 52, not even close)?

*I had results on a test called 5HIAA above normal range-it measures serotonin metabolism and could point to a carcinoid tumor. Nobody ever mentioned it or that I should be re-tested.

*There's some kind of fatty deposit on my liver.

So, okay. Are those drs. just protecting me from stuff that is not serious, neglecting to read the lab reports they ordered, or just enjoying watching me think I'm crazy because I have symptoms when there is "nothing" wrong with me?

I am going to try and get all my records if I can, including from my 3 hospital jaunt to hyster and the tortuous 7 lap surgeries a previous gyno put me through before admitting the uterine artery embolization I had didn't work. You could say that I am extremely annoyed and my trust of the med profession is even lower than before and I thought that was impossible!!!!!!!!!!

And on the hormone front, it is hormone fluctuations that precipitate those awful 12 hour high bp, etc. attacks. I thought once again that maybe I'd gone thru to the other side into post meno. Things were calm since the 6 wk. of sore breasts and swollen feet (except the attack as the hormones dropped off). Then I had another heart-pounding session this week and the breast swelled back up. Here it comes again. I know it's hard for the sisters who had ovaries removed, but at least you know you are bottomed out and can adjust from there. This is like being a drug addict, injected with estrogen and then going thru withdrawal again, over and over. My body is just worn out. And I'm taking better care of myself than I ever have. Good eating, daily exercise.

So forgive me the length, but I am not wanting to ever go to a dr. again. My venture into Kaiser got me a gp who didn't want to hear anything about hormones. He stuck his head back in the door (after prescribing 2 blood pressure meds from measuring my bp once in the wrong position) and said as a definite after thought, "Oh yeah, nice to meet you" in a voice that so dripped with insincerity.

Love you all for reading! Still Jane of the Jungle, swinging on my hormonal rubber band, Linda

((((Linda))))) I'm so sorry you've gone through so much since your hyst and that you're STILL fighting to get your health back

I can't shed any on your questions, but, hopefully, someone will come along soon who has some answers for you.

(((Linda)))
Some 'things' which they consider OK can collectively create a better picture of why we feel like we do. They think we don't need to know, that because we are women that we will overeact and make the condition worse<doctor logic>. That said it's their responsibility and your right to know just what they have discovered during testing. It may mean something further down the road and you can inform other health professionals of various conditions you have.
I found out early on just how important it was to get records, they didn't like it here in Oz (it's not normal practice, but we are entitiled to pathology reports, hospital notes etc.). For me it made me realise that my gyn was not being honest with me, that he had lied to me about several things and was not to be trusted any more with my health. So I went to another gyn who helped me out at the time. More recently having all my records has been a real boon trying to get my Lupus-or- whatever-it-is diagnosed. There was SOOOOOOOOOOOOOOOO much that they considered insignificant that adds up to Lupus criteria, things they never explained or even told me about. I gave all this to the University doc, he wasn't threatened, he was so glad to have it, it's helping him put together a more complete picture. I think good docs have nothing to hide. Like you I had trouble getting some of the reports, ones that hadn't been acted upon and should have been at the time.
I hope that armed with this knowledge that you can get over the initial shock of it and get the health care you deserve. Hang in there Linda, persistence pays off. And big 's to you, I know what swinging by that rubber band feels like, you have lots of women here who can identify with what you are going through.
(((Linda)))

	Quote:
And on the hormone front, it is hormone fluctuations that precipitate those awful 12 hour high bp, etc. attacks. I thought once again that maybe I'd gone thru to the other side into post meno. Things were calm since the 6 wk. of sore breasts and swollen feet

So, the fact that my blood pressure has been elevated and caused the dr to change my meds and the fact that my ankles have been swelled and my breast hurt worst then when I had PMS has not been my imagination!!!!

If anything, you getting your records Linda have been a god sent to me.

I thought I was going crazy.

Good luck in getting the balance of your records.

First of all, you look like a woman in need of a . And then on to business:

I'll start with your echo, as that's what I do for a living. The LVH (as we call the hypertrophy) means that the muscle of your heart has been beating against resistance of the high BP and thickening up, as any muscle will do against resistance. This measurement is very operator-dependent (time for my annual rant about making sure you have a registered sonographer to do your study, but that's for another forum) and should be indexed against your size. Mild mitral and aortic insufficiency at your age, and given your hormonal/BP woes, are really no surprise, and probably not a problem -- in part because our equipment is so sensitive we pick up insufficiency that is "physiologic" ie normal for all of us and unlikely to be pathologic.

You should track your left atrial size -- if it is larger than 4.0 centimeters, you may have an answer to your rhythm problems and a chance at treating them.

And, frankly, I'm with you on that ovary thing. They're not serving you very well, are they? Seems like you'd have a better chance at controlling some of this if you WERE in control by titrating your HRT, rather than having your ovaries make the "choice" for you.

Have you had your thyroid checked? And can you keep a diary of when you have the rhythms? We could probably work out a strategy with Kaiser to get you the help you need (sounds like the GP isn't going to be much). You might want to begin with a repeat of the 5HIAA -- not necessarily for the carcinoid angle, but the fact that it's involved in serotonin metabolism, which again may be hormonally mediated. Who had ordered that for you, and why? It's not the most common of tests to do. And, in conclusion, it's time to beg for an endocrinologist with a specialty in female hormones (a reproductive endo would be even better -- there is one at the Kaiser system Sunset office, and maybe Baldwin Park).

Nancy, your BP may well be in response to that, and, ladies, to the hyst itself. The uterus used to secrete, among other things, a hormone called "relaxin" which does have an effect on blood vessel walls as well. We do have more BP problems, and Trish has researched this subject extensively -- it's one of most confusing parts of the Jungle.

Linda, you keep working on it. You can change your GP at Kaiser, but do a search on their site...if I'm not mistaken, they are listed there, along with their specialties and areas of interest. Before you're done, you should see a cardiologist (for the arrhythmia); an endocrinologist to sort out the 5HIAA thing; and you should have an internist as your primary care provider, rather than a GP. In the Kaiser system, the GPs are the most effective with the young families without complex, multi-factorial problems. You look for an internist with an interest in hypertension, and look also into the endocrine people and the cardiologist. A GYN is almost superfluous at this point, although if they express an interest in HRT, it might be worth your try. You go to member services, let them know that you have multiple problems, and ask for the internist you've selected. They can then start to steer you through the system. And, of course, you'll need a therapist, by the time this is done, for how crazy the process makes you!

And if you have any other questions about your echo, PM me. If my mailbox is full, don't panic...hang on to it and PM again within the day. I'll get it.

Take care, and keep in touch, OK? Another for the road...

Audrey

Linda,
It is good to see you. I'm so sorry that you're still looking for answers. I hope you find some soon. I'm sending big s and lots of ers.

Nancy-yup, if you are on hormones, you sure can experience the sore breast/swollen feet thing.

I know you have been through the mill, too, Lily. I would love to hear your current set of drs. might wade thru your previous medical records and expand on them to come up with a solution.

And, Audrey, I will pm you with some more info. As usual, you are a wealth of info and made me feel better about the mv and av thing. I can see I will have a battle with Kaiser ahead of me and should keep the therapist's number handy (but not a Kaiser therapist!).

The good thoughts surely help, too, from Kim and Dany.

and more Linda

I'm with you on the inability to obtain records. I asked for my records from my gyn (who was very unhappy about me leaving) and was ttold that I would be charged $1.00 a page and that there was over 100 pages. When I finally did get them to release my records to me, there were only 76 pages. Now you tell me where the other pages are and what are contained in them? I guess these dr's don't realize that this is illegal. But now I'm told that is all there is and I know better. There are references to tests, but no results to be found. I asked for my COMPLETE record including ultrasound images and was told they couldnt be copied. I was interested in seeing the pre-op authorization that I signed and of course that's not in there either.

I hope that you are able to find some answers to your questions soon and find some relief. I know all too well how it feels for Dr's to make you feel like you are nuts. After giving a list of my symptoms to my gyn, his response was to write me a script for Xanax.That is certainly not going to help ANY of my problems but for him it was the easy way out. I have only just begun what I'm sure is going to be a long winding road of specialists, trying to find out what is REALLY wrong with me. I am starting with a GI and I go for colonoscopy and endoscopy over the next couple of weeks.

I hope everyone is doing well.

Dawn

It certainly is a frustrating experience - just trying to get your records from doctors can drive you mad! I guess my next move will be to demand my colonoscopy report from last December from my GI. He doesn't know it yet, but I'll be canceling my appt. set for December since he was supposed to call me back in September for a meds change and I'm still waiting for the call (not going to happen).

Anyway, when I asked for a copy of the report (which I have been doing since I keep running into idiot doctors), I was told "I'll give you a copy, but we have it here in your file and you really wouldn't understand it anyway." Hey doc, thanks for the insult - I used to work in a hospital and I could probably figure it out and if not, so what? I went through the prep and test and for that, I deserve to know what the report says. I'll be writing them for a copy. They just love it when I do that. My internist's office is the same way. They act like I am insulting them, but I don't care anymore. If I don't stand up for me, no one else will.

Sending 's to everyone!

Lisa

who has trouble getting complete sets of med records. This is just so stupid! When I get my car fixed, they give me a list of all the tests they did, results and subsequent work. There's a guarantee thrown in and it's much easier to take bad mechanics to task than bad doctors.

Why are we expected, in fact encouraged, to check out any work we have done for our cars, houses, etc. , yet there's an unwritten law about doing the same with the very people who hold your health in their hands????????

Confused and frustrated about this, too.
Linda