User Tag List

Page 1 of 2 12 LastLast
Results 1 to 7 of 8

Thread: Long rant; dr. walked out on us yesterday, plz help us

  
  1. #1

    Long rant; dr. walked out on us yesterday, plz help us

    Hi everybody,
    I am new here. I came, looking for help about mom's condition; she was diagnosed with Hashimoto's back in the mid 1980's and has been taking synthroid since that time. Recently, she started having this strange occurrance--she was born legally blind in her left eye, and suddenly, the eye is protruding. It is very noticable,and scratchy for her, and very irritated. We immediately made an appt. with the eye doctor, who said right away, Grave's Disease! Let's get some bloodwork done.

    The bloodwork came back 2 days later, said it is NOT Grave's disease, that she definitely has hashimoto's like we'd always know. This eye dr. he is a professor at the U of FL here, and he said he was perplexed and then had no idea what was causing the eye to protrude. So he says, 'let's make you an appt. with an endo--he is a specialist in the thyroid gland.'

    So we get an appt, and the 1 appt with him, his protocol on the first visit and that no one comes into the exam room except him, his nurse, and the patient. I was already protesting. Mom has brain fog, and has trouble remembering things. I didn't make a fuss, and let her go in alone. When she came out, she was upset because he told her if she didn't cover her eye at night, she could get an infection. They would NOT let us get copies of the paperwork he did, so we had to stand there and write down his findings all by hand, already in my mind this was a bunch of B.S.! I don't care what that HIPPA laws says-- mom made the request for the copies herself, and the staff said no, they couldn't do it.

    Anyhow, the Endo is the dr. who told her what was wrong with her eye. He said that her autoimmune system is attacking the fat behind her eye, inflaming it, and causing it to protrude. Go back to the eye dr, he said. So we made another appt with the opthal.

    The eye doctor said again the bloodwork (we had another panel done) was showing she has hashimoto's and he still didn't know what was wrong. He gave her more lubricating eye drops and said to wear a patch. The eye doctor again said he had no idea---he said people who have HYPO like mom usually don't have this problem, only seen in people with HYPERthyroidism. Go back to Endo.

    So we go back to the Endo yesterday

    and this time I go in with mom. The dr. comes in, doesn't say hi, how are you,

    nothing. He just pulls out 2 papers, says see here on the bloodwork, it says your

    T3 is high. And we ask, 'is this related to the eye problem? That is what we are

    here for.' and he says no. We tell him we are here about her eye and he said

    go back to the eye dr. At this point, mom says, but he doesn't know what is

    wrong, and besides, it was YOU that initially told me what was happening to my

    eye, about the fat being attacked by my immune system. He says whatever is

    going on is not thyroid eye disease. He says he wants to do an uptake test. I

    start asking his what is is, and he acts put off, like I'm asking too many questions.

    Mom is getting upset and we tell him we keep getting shuffled between him and the

    eye dr. Each keeps saying to go to the other. Then he says, Well I just won't

    do the uptake test then. And he starts to actually BACK out of the room, saying he

    had to take care of his other patients. I said, "Is my mom not a patient? You

    ahven't even answered our questions!" and he walked out on us. He had not even

    been in there 5 minutes with us! At this point, we headed out of the exam room and my mom informed them that he had not answered our questions and that she was not going to pay for this visit.

    Then, he gets his nurse, who we discover is his wife!--to try to talk to us. She takes us into another room, and isn't any more helpful. I am trying to tell her we are getting shuffled back and forth. I told her that her office had called us on Friday a few days earlier and said all of her bloodwork came out normal, and then later that day at 5, they called back and said it was not normal. It ruined our weekend, and well, mom let her know about it. The nurse/wife tried to say no one said that, but we told her this was not true. We also asked WHY he wanted to do an uptake test, which was primarily done only on patients suspected of HYPER, not hyop, and we told her that we had been doing a lot of research online, trying to understand about mom's condition, and everything. You know how you read and read? Well, we had already read many time about graves, the uptake test, the radiation, biopsies of the thyroid, everything. So we were informed and not completely ignorant when we went in there. When we told her this and asked why he would do this test, she got really nasty and said "He has been doing this for 30 years now and you are reading too much on the Internet!" I could not believe it. She said whatever we were reading was wrong. I wanted to scream, "So the Mayo clinic and WebMD are publishing false information, is that what you are saying?" but I held my tongue because I was already crying at this point, and too choked up to talk. My mom politely informed this nurse/wife that the Internet was full of helpful and correct information, and that doctors and surgeons all over the world were using it, publishing findings on it, and that not everything you read online is incorrect, especially when published by reputable sources, and published again and again.

    Did I forget to mention this dr and nurse/wife of his are quite old, at least in theit late 60's or 70's? They both have white hair. Mom and I believe now they are old fashioned for inforrming us we have read too much! Mom and I are adequately insulted! Since when it is wrong to be a little educated about things?

    Well, long rant short--- he was completely a jerk and didn't explain anything to us. His nurse/wife seemed to only try to make it worse. She eventually kicked me out of the room, asking to speak to my mother 'alone.' I stood right outside and listeneed anyways. I told the girls in the office I had just been kicked out for asking too many questions! They all 3 just looked at me, like, "blink, blink."

    So, can anyone help us? Any ideas on what is going on with mom? She has had hashi's for 20+ years now. Her bloodwork came back, but the T3 was a little high. Not sure HOW high, since they refused to let us have copies of anything! She had a cat scan, and her orbits were okay, no tumors were seen, nothing abnormal. Then she had an ultrasound of her thyroid and it also said nothing looked wrong. She has no goiter, no tumors nothing! Her bloodwork came back normal except the T3 is high. She has all the symptoms of Hashi's.

    The only thing was can guess now, since our wonderful educated doctor refuses to explain even the simplest thing to us, is that her autoimmune system is attacking the fat behind her one bad eye only. The CAT scan showed that there was some inflammation in the sinus cavity, near the eye in question. But why?

    Since this jerk dr. says this this problem is NOT thyroid eye disease, and all indications I can find say the uptake test is for people with HYPER not HYPO, do you think she might be having this uptake test done for nothing? I read it can only find 3 things wrong: 1. Inflammation of the thyroid gland because it is taking in too much thyroxine. (Bloodwork says this is NOT the case for her, it is the opposite). 2. Grave's disease. (Also ruled out in her case) or 3. a goiter, which might be cancerous. (Also ruled out, she has NO goiter, no swelling of her thyroid, not nodules, or anything, according to the ultrasound). So is he doing this for nothing?

    And, is the thyroid gland part of her autoimmune system? Is there a connection there? Does the thyroid produces antibodies, helper T-cells, or another autoimmune body? I am not sure.

    Any help or advice is greatly appreciated!

    Oh, and also, can someone advise us on what we can do about this horrible doctor? I know there are sites where you can leave your comments or experiences with your doctor, but we want to go higher than that. Can we make a report with a higher official? Like the AMA or something? We don't want to refute with the insurance company (God, you know what this might be like, the phone calls, ugh!) and it's not a case for the insurance really---we want to inform someone, a board of doctor's or something, about the crappy service we got, the fact that he walked out on us and refused to explain anything, and refused to let us have a simple copy of her bloodwork paperwork. Any help on this?

    Sorry this was so long; Mom and I appreciate your help! ~Molly

  2. #2
    Administrator Achievements:
    Veteran5000 Experience Points
    Thyroid Guy's Avatar

    Join Date
    Nov 2008
    Location
    Birmingham UK
    Posts
    875
    Country
    England
    Gender
    Male

    Re: Long rant; dr. walked out on us yesterday, plz help us

    I'm thinking the reason no one has replied to your post Molly is because its very very long. I'm speaking for myself now, I have looked at your post and its just to much for me to process.

    I hope you find a good response

    If you would like any help please dont hesitate to break it down into smaller posts, maybe asking about one particular problem at a time.

    Please dont think I'm having a rant, I'm not, I want you to have the best possible experience here, and get the best possible support and advice!

    I hope your mother gets well soon!
    I'm not an expert. I'm here to share my Thyroid journey and tell you all my experience of Thyroid disease.
    If you want to chat, please dont hesitate to contact me, I will help where I can!!

    http://www.twitter.com/thyroidhelp

  3. #3
    Junior Member Achievements:
    Veteran1000 Experience Points
    marsaday's Avatar

    Join Date
    Nov 2008
    Posts
    26
    Country
    UK
    Gender
    Male

    Re: Long rant; dr. walked out on us yesterday, plz help us

    it sounds like you are in the USA. where ever you are i would get a new doc and one who isnt an old set in his way guy.

    check out this site as they are more USA based. they also have a list of docs if you ask them.

    http://forums.realthyroidhelp.com/viewforum.php?f=14

  4. #4
    Junior Member Achievements:
    1 year registered1000 Experience Points
    blackberrybunny's Avatar

    Join Date
    Sep 2009
    Posts
    4
    Country
    United States
    Gender
    Female

    Re: Long rant; dr. walked out on us yesterday, plz help us

    Thank you, Thyroid Guy, I completely understand. I know it is too long. I was just so upset yesterday morning when I was typing it all. I didn't realize how long it had become. I'm sorry for the long post, you guys. I just really needed to get it off my chest, and that helped a lot.

    I know what most of you will say is find a new dr. We would love to. But there ins only one in our area, and others are over an hour away. We are just having a difficult time with the transporation to and fro, because mom is getting old, and I am legally blind and can't drive. We'll figure something out, we've got to! It's very difficult when there is no one left in your family to call on.

    for listening. I'm really sorry about the long post. I'll understand if no one wants to bother with it. Thank you.

  5. #5
    Junior Member Achievements:
    1 year registered1000 Experience Points
    Pamela's Avatar

    Join Date
    Sep 2009
    Location
    Michigan
    Posts
    14
    Country
    United States
    Gender
    Female

    Re: Long rant; dr. walked out on us yesterday, plz help us

    Quote Originally Posted by blackberrybunny
    Thank you, Thyroid Guy, I completely understand. I know it is too long. I was just so upset yesterday morning when I was typing it all. I didn't realize how long it had become. I'm sorry for the long post, you guys. I just really needed to get it off my chest, and that helped a lot.

    I know what most of you will say is find a new dr. We would love to. But there ins only one in our area, and others are over an hour away. We are just having a difficult time with the transporation to and fro, because mom is getting old, and I am legally blind and can't drive. We'll figure something out, we've got to! It's very difficult when there is no one left in your family to call on.

    for listening. I'm really sorry about the long post. I'll understand if no one wants to bother with it. Thank you.
    Hello blueberrybunny,

    I have some ideas, suggestions, but the post can be long winded. So maybe we could email one another to discuss this matter further?

    I am not a medical professional; instead a patient and caregiver like you. Empowerment, sometimes shared by others, is key to sound decision making and continued happiness.

    Let me know what you wish… in the meantime ((((((((((HUGS)))))))) to you and your mom.

  6. #6
    Baby Moderator Achievements:
    Veteran1000 Experience PointsOverdrive
    Awards:
    Posting AwardDiscussion Ender
    Stfluffybrain's Avatar

    Join Date
    Dec 2008
    Posts
    347
    Country
    UK
    Gender
    Female

    Re: Long rant; dr. walked out on us yesterday, plz help us

    Hi hon
    Thankyou Pamela, the mods and many members here not being based in the US are unaware of what you can do in this annoying and potentially dangerous to patient care situation in the US, there are procedures over here which would be of no use to you at all because of our different systems.

    I think you might get something out of this medical research paper
    http://www.pubmedcentral.nih.gov/pag...68&pageindex=1.

    Personally I feel your mum hasn't maybe been properly kept watch over during her long illness. Hashis tends to put you into thyrotoxicosis then down into hypo in swings and roundabouts, thyroxine is like a life support, doesn't supply all the required hormones and relies on your body to take up the slack with peripheral conversion. Inflammation levels soar in hypos.

    Now while I have no idea what is going on with your mum's eye I recommend damage control.
    Levelling out her thyroid hormone levels, getting that excess T3 down (if it is still like that), keeping her in the upper thirds of the ranges for T3 and T4, seeing how bad her levels of antibodies are at the moment and treating appropriately, it could be she may have to use some steroids for a short time which may indeed get this under control. She might like to have her vitamin D tested as if that is low it stops the thyroid working properly and there are all kind of implications for health problems with low D. Ferritin is another.

    You need to find a nice kind Dr, perhaps a naturopatic medical Dr, ie one qualified in both fields, I think from reading US forums they seem to be more tolerent of people who like to get involved with their healthcare. I could be wrong. Not sure but are they called DOs? Someone like Mercola.

    I believe before you got thrown out by the Dr, that you posted the problem of your mums eye on the Proboard Thyroid Disease chat centre forum? This is in fact US based and the first one I ever found when I hit the net about my problem over 2 years ago. Good board, very level headed, some of us are hot heads lol. A few of the folk I knew on there have gone now to other boards sadly

    There are lots and lots of people who might be able to advise you on the net, there are the Thyroid groups in the US I recommend you try
    http://health.groups.yahoo.com/group...guid=396325965 which is run by Janie who wrote the Stop the Thyroid Madness Book
    A little known group run by Tina who has a daughter with hypothyroidism, but it is small and she comes up with interesting stuff as do her members sometimes
    http://health.groups.yahoo.com/group...guid=335383847
    Our Mary Shomon and her forum is accessible through http://www.thyroid-info.com
    Also as someone already suggested the http://www.realthyroidhelp.com a great forum
    If your mum is suffering from thyroiditis she may be getting some eye disease, did they test her TSI antibodies, because you can have both diseases hashis and Graves.

    Any time you feel like ranting please don't hesitiate, go get em
    Even if we cannot practically help you we will certainly offer moral support.

    take care hon
    lotsa luv
    Dawnx
    ''If you don't know where you are going, any road will get you there.'' The Cheshire Cat, Alice in Wonderland

  7. #7
    Junior Member Achievements:
    1 year registered1000 Experience Points
    Pamela's Avatar

    Join Date
    Sep 2009
    Location
    Michigan
    Posts
    14
    Country
    United States
    Gender
    Female

    Re: Long rant; dr. walked out on us yesterday, plz help us

    Hi hon
    Thankyou Pamela, the mods and many members here not being based in the US are unaware of what you can do in this annoying and potentially dangerous to patient care situation in the US, there are procedures over here which would be of no use to you at all because of our different systems.

    I think you might get something out of this medical research paper
    http://www.pubmedcentral.nih.gov/pagere ... ageindex=1.
    Hello Dawn,
    Thank you for the kind words, (((((hugs)))))) but blueberrybunny was the original poster. You are right, I live in the US, which is why I thought I may shed some support toward blueberrybunny’s way - sounds like she lives in the US too.

    I downloaded that paper you recommended – excellent reading. Thank you.

    You need to find a nice kind Dr, perhaps a naturopatic medical Dr, ie one qualified in both fields, I think from reading US forums they seem to be more tolerent of people who like to get involved with their healthcare. I could be wrong. Not sure but are they called DOs? Someone like Mercola.
    Some physicians encourage patient participation but most are still intimidated by any patient involvement/knowledge. They refer to us as “uncooperative”. It takes time and many physicians before finding that “right one”, but they are out there.

    Yes, the DO’s are Doctors of Osteopathic medicine, treating the whole patient (complaints, symptoms and test results) not working solely from test results like MDs.

    There are lots and lots of people who might be able to advise you on the net, there are the Thyroid groups in the US I recommend you try
    http://health.groups.yahoo.com/group/Na ... =396325965 which is run by Janie who wrote the Stop the Thyroid Madness Book

    A little known group run by Tina who has a daughter with hypothyroidism, but it is small and she comes up with interesting stuff as do her members sometimes
    http://health.groups.yahoo.com/group/Th ... =335383847
    Also suggested the http://www.realthyroidhelp.com a great forum

    If your mum is suffering from thyroiditis she may be getting some eye disease, did they test her TSI antibodies, because you can have both diseases hashis and Graves.
    I will be checking out your forum recommendations above myself. Again thank you for your enlightenments…I am always looking to add to my thyroid education repertoire.

 

 

  • Advertising

    advertising
    ThyroidHelp.org
    has no influence
    on advertisings
    that are displayed by
    Google Adsense

      
     

Similar Threads

  1. ok, sohow long can I expect to be like this?
    By poorlyboy in forum General Thyroid Condition
    Replies: 7
    Last Post: 2nd January 2012, 05:37 PM
  2. How long to get it right?
    By aimee-lou in forum General Thyroid Condition
    Replies: 2
    Last Post: 24th August 2010, 07:59 AM
  3. Test results- how long? UK
    By akme in forum General Thyroid Condition
    Replies: 28
    Last Post: 14th January 2009, 01:30 AM

Tags for this Thread

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •  
Powered by vBulletin™ Version 4.2.4
Copyright © 2017 vBulletin Solutions, Inc. All rights reserved.
All times are GMT. The time now is 12:45 AM.