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  • huntwork
    Participant
    Post count: 7

    Hi, I don’t know where to begin. I was told I had Graves Disease even though no antibodies were showing up. I had my thyroid removed…the path report stated that they didn’t find antbodies, yet I have been seeing a D.O who has put me on all kinds of anti-inflammatory suppliments (prior to diagnosis) like mega doses of fish oil, vit C, you name it, something called Transfer Factor which is FOR people with auto immune diseases..something must be hiding it. Anyway, I have ALL the signs and symptoms of Graves…all my life. Encluding the hypo/hyper thing, the swelling of the hands/legs/feet for no apparent reason, even my surgeon felt my eyes showed GO (I see an Opthamologist next Tues.) WELL, my Total thyroidectomy was August 10th, and things are not getting any better (I take natural desiccitated thyroid) everything is all over the place, I am trying to get off Lexapro as it is interacting with the thyroid med…anyway, I saw the Endo for only the 2nd time..first time, She says I have Graves, just for some reason (I associate with suppliments) antibodies aren’t showing up. NOW this very day, she says "It’s not Graves disease as no antibodies were in pathology". Okay, here comes the rant and plea for help: HOW IN THE HECK CAN SHE TELL ME I "MOST DEFINITELY HAVE IT" (AS WELL AS OTHER DOC’S) THEN SAY THIS TODAY? I told her I COMPLETELY disagree with her…she then proceeds to tell me that she is only a specialist in nodules and cancer…hello? I THOUGHT she was an Endocrinologist!!! She told me she was releasing me to my family doc. (who is freaking out about all this and doesn’t understand that I apparently am actually all over the place.) This endo even made the comment on my scar: "wow! that’s a huge scar!!" to which I said "Yeah, so, you don’t think inflammation was an issue huh? Even with all signs and symptoms showing?" She has released me, my family doc isn’t helping, I’ve done what I was told and now I am left with no thyroid and no frickin’ help!!! Is the WHOLE stinkin’ "Endocrinology" field like this? I was never given any iodine testing, just told I had eye problems (visible) all signs/symptoms of Graves…now I’m left without a thyroid and no one wants to help me get out of pain!! IS THIS NORMAL?!?!? What do I do? I wasn’t even given a name of another Endocrinologist!! And this from OHIO STATE UNIVERSITY!!!! I DO have Graves, and I am in pain, and now I have to fight just all of this?!?!? WHAT THE HECK?!?!?! I mean, they are messing with my livelyhood. (I am on disability, Graves is also covered, I have been diagnosed with it!!! She can’t just say "Oops, I was wrong" when I have ALL the signs/symptoms, clinical symptoms EXCEPT the antibodies are not showing up due to suppliments!!) Even my surgeon said I had it!!! WILL SOMEONE PLEASE HELP ME OUT HERE? I’M PRETTY SCARED AND DON’T KNOW WHAT THE HECK TO DO!!!

    Harpy
    Participant
    Post count: 184

    To say that you have recieved substandard care would be an understatement of the highest magnitude.
    I have not heard of GD without the TSI’s aka Thyroid Receptor antibodies, but as I understand from a previous post you did definately have some thyroid issues.
    You obviously do need treatment, the question is what, you are where you are and the main thing you need to have sorted is to get your replacement hormones right and you will need medical support to get the appropriate tests for this, that will include the FT3, FT4, TSH, if things are not stabilising then you may also need to test for RT3 and I would also test for the TSI’s and other antibodies, even though you have had a thyroidectomy, sometimes there is enough tissue left to still be reactive and produce hormone and I have also heard of some people having other thyroid tissue in a different part of their chest cavity that will produce thyroid hormone.
    The main thing is to get that replacement hormone right and then you can continue working on your other health issues, You will need a definative diagnoses on your GO so that you can rule out other causes.
    Some people do not respond well to the synthetic T4 hormone and may also need some T3 as their body’s conversion rate is poor, some do much better on the natural hormone, but be aware that the desicated natural will most likely contain some antibodies as it is after all just dessicated porcine thyroid gland, you will have to try these things and work out the kind of person you are by how your test results are.
    You must get medical support now as you will need the replacement hormone ongoing.
    I hope someone else here can direct you better regarding how you go about getting better medical attention and consideration from your doctors, I’m in a different country and couldn’t hope to guide you on that path at all.

    huntwork
    Participant
    Post count: 7

    Thank you, Harpy. I sorta knew all this already. And yeah, I DEFINITELY have had all signs of Graves" ( heart palps/anxiety/panic for no reason/ going hyper/hypo all my life/severe joint pain/Eye problems like night blindness/one eye larger than the other, swelling in my eyes, eye pain frequently, bilateral goiter, 2 small nodules (less than 5mm each), swelling of my hands and front of calves/feet. High BP, High heart rate at times, definite mood/thinking issues. My eyes are gritty, painful, red, swollen etc. have a LOW heart rate at rest (lower than 52) then suddenly it would jump to 120 bpm and I was waking up out of a dead sleep with heart palps, feeling strange then at times, I would be checked (like in December) and I was Hypo with the depression, skin dryness/flakiness, my hair is dry as straw and falling out, I can’t stand heat or when hypo I can’t stand cold. ONE endocrinologist I saw before all this said in Jan of 09 "You’re thyroid is actually BETTER than mine" this after being diagnosed as HYPO by my then PCP (have since changed)in Dec of 08 and put me on ONLY Cytomel to which I completely freaked out with anxiety and you could have peeled me off a ceiling, this is why I switched all doctors ….the WHOLE nine-yards. My eyes can suddenly go double, they are stiff, I obviously have no thyroid anymore because I FOLLOWED THE STINKIN’ ADVICE TELLING ME THIS!! And here I am. What the heck is WRONG? MY new integrative D.O. put me on iodine suppliments..which made things much, much worse and I went off of them, she checked me in Dec of 09 and I was hypo, then she checked me again in Jan of 10, and yep, you guessed it, I was Hyper again. I follow a pattern, I have severe swelling of extremities, my eyes are swollen right now and painful. The left is bigger than the right and I have severe pressure. I DO HAVE GRAVES. (all these anti inflammatory suppliments CAN hide the antibodies, especially Transfer Factor, which is Cow’s Colostrum..according to my D.O. I need this to help my body with the autoimmune disorder) I am so frustrated and in pain I can’t see straight. What do I do?!?! Just say "Okay," ignore it, and DIE from all this mess? That’s what it feels like they’re telling me!!!

    huntwork
    Participant
    Post count: 7

    Oh, BTW; the iodine suppliments were way before original diagnosis of Graves, and I stopped them totally before all that. This was a long time prior to all THIS mess. Then a hospitial ER did a radioactive Iodine CAT scan (when I had a cyst rupture, I also have ovarian cysts, uterine issues, Insulin resistant, Iron def. anemia, had frequent infections that would never go away, like on antibiotics 10-15 times in ONE year) and that concentrated in my thyroid (obviously). It’s a mess.

    Bobbi
    Participant
    Post count: 1324

    It is possible to be hyperthyroid (with all of those accompanying symptoms) and not have Graves — the autoimmune disease. Obviously, none of us here are qualified to tell you that is what was happening to you, but, again, hyperthyroidism does occur without the antibodies. And hyperthyroidism is what makes us so incredibly ill. Sometimes, it is caused by an actual virus — but that would not continue for a long period of time because the body’s immune system would eventually kill the virus off (as I understand things). Sometimes hyperthyroidism is caused by a group of cells that go berzerker for whatever reason — in medical speak this is called an "autonomous node." A group of thyroid cells go out of control, over producing thyroid hormone. The treatment for this problem is really the same as the treatment for the autoimmune disease, too.

    Also, the eye disease is now often called THYROID associated opthamopathy, instead of GRAVES opthamopathy because researchers/doctors have been seeing it in people without the autoimmune Graves disease.

    I know it is frustrating. And I wish you well, figuring out what is best for you to do now. I do hope you are feeling much better, and soon.

    Kimberly
    Keymaster
    Post count: 4294

    Just wanted to add that Graves’ *is* sometimes diagnosed without conclusive antibody tests. If the patient is hyperthyroid and the antibody tests are negative, this is usually where a RAIU scan is ordered. If the uptake levels are above normal and “diffuse” (meaning that the entire thyroid takes up the iodine evenly), this is often considered enough evidence to diagnose Graves’.

    PLEASE keep fighting until you find a doc who will work with you to get your thyroid hormone levels right. Some general practitioners are comfortable doing this…others will recommend an endocrinologist. A couple of good web sites for endo referrals are http://www.aace.com/ and http://www.thyroid.org/. If you use the aace site, be sure and select the specialty “thyroid dysfunction.”

    Please check back and let us know how you are doing!

    huntwork
    Participant
    Post count: 7

    Thank you, Ladies sooo much!! And Kimberly, you are correct. I just read in an Endo textbook (I do a TON of research) the very same thing that you said, it CAN still be Graves as the antibodies are diffused and called CIC and can hide…unfortunately no iodine test can be done because they removed the entire thyroid already. I have contacted my surgeron and he has been informed of the problem and he said he would talk to some of his endo collegues as to who would be the best for me. I appreciate his time and your time for putting up those sites. My D.O. doesn’t understand that right now, my labs WILL look "Hyper" because I have no thyroid at all. The TSH WILL be low. (but she didn’t do the extensive testing, just some regular tests that most PCP’s usually do) the "specialist" I saw said that no labs will be an accurate reflection of what is going on with my hormone levels right now since surgery was so soon. (August 10th) She said she wasn’t going to even pay attention to them. When I got the test results: TSH was at .02 (very normal for having no thyroid from what I understand.) Free T4 was 1.2 (Within normal limits) but my Total T3 was 216 (elevated) I am on other meds that can affect that (which I am weaning off of) so, basically, I will be getting to an Endo who specializes in "Hard to find" Graves cases.

    I thank you all for letting me "rant" and ask questions. I know no one is a doctor for this, but I really do appreciate the help from those who have experienced similar problems. Why is the endo field so weird? Well, I guess that can be said for a lot of medical fields. LOL!!

    Thank you again. <img decoding=” title=”Smile” /> And I look forward to participating and letting you all know what happens!!

    I took my daughter (9) to a "Ped Endo"….let’s just say he was EXTREMELY wet behind the ears and had not a clue as to what was going on..needless to say, we are being referred to another Ped Endo by my SAME surgeon who does have experience with this kind of thing in children too. Both girls are expressing Graves symptoms. Hopefully, they can catch it in time and not go through all I have!!

    Okay!! Thank you all so much!! I appreciate the help, the shoulder and the advice. It all really does make one feel not so alone and like I’m going crazy!!!

    mamabear
    Participant
    Post count: 484

    I dont have time to type a long post… please forgive my forwardness though…
    I think you might need a new DO, have you thought of an MD? or another DO that doesn’t try to put a bandaid over the issues you have. I mean who has you on Lexapro as well? Lex is some serious stuff, I know my sister was on it. If you were on it before doing the surgery I can see how you didn’t research or understand what was going on before the surgery. Lex makes the people I know who were on it numb to serious issues.

    I’d think about all the meds you are on, get a list and talk to your PHarmacist about the interactions and side effects you are having. DONT go off the Lexapro without consulting your dr. IT IS TOO DANGEROUS to just go off of it, the withdrawl is horrible so please dont. Talk to dr. and get it sorted out fast.

    GEt copies of all lab work
    Get copies of all ER/other dr’s you have seen
    Get all medical charts as well

    Lavender
    Participant
    Post count: 6

    I have Graves and had a total thyroidectomy in August as well. I am very frustrated with my Endo since surgery, and I think I may need to find a new one. My parathyroids have been very low functioning since surgery and my thyroid replacement does not feel right to me. I fell terrible and my Endo has not been helpful. If you find someone you like in Columbus, I would love to know who. I just want to feel normal again.

    Kimberly
    Keymaster
    Post count: 4294

    Hi Lavender – Sorry to hear you are not feeling well, but I’m glad that you found our group. This is a great place to get information and support!

    If you scroll up a couple of posts on this thread, I listed a couple of web sites that are good for endo referrals. You definitely want someone who is willing to work with you until you FEEL good again…not just until your labs are in the “normal” range!

    In the meantime, you might start keeping a detailed symptom log of the issues you are having on your current dose. Are you feeling fatigued? Or wired? Is your heart rate higher or lower than normal? Are you sleeping more or less than normal? This kind of info can potentially help your current endo (or a new one, if you decide to go that route) zero in on why you aren’t feeling well.

    Best of luck – hopefully, you can find a doctor who will get you back on the path to good health!

    Lavender
    Participant
    Post count: 6

    I saw the referral lists and may make some calls. My eyes just tend to glaze over when I see a list of doctors. I really feel more comfortable when someone who has actually been there can give me their opinion/experience.

    Bottom line is that I felt great for a good month starting a week after surgery. Endo told me I was hypo and raised my replacement hormone. About two weeks later, I started having heart palpitations again. I felt anxious and agitated and my whole body hurt. Heart rate and BP were elevated.

    Endo did bloodwork and everything was in range. He dropped my dose and switched me to brand synthroid.

    Two weeks later, I feel exhausted and depressed all the time. My whole body still hurts, and I can’t focus on anything. Don’t have the energy to do anything and I just want to cry all the time.

    My next appointment is in December. I can’t wait that long feeling the way that I do.

    Endo told me that as long as my labs were normal, he did not think it was thyroid, and would refer me back to my PCP. All through my hyper storm and in the months prior to my surgery, he would tell me that my symptoms were not thyroid related, and send me back to my PCP who would tell me that it was my thyroid and that it would get better after surgery. She was right, everything did get better for a month. I felt better than I had in years.

    Now I am just so discouraged. I have no idea where to go for help. One more appointment with a doctor who wants to argue with me about how I could not possible be feeling the way that I do and that they know more about this body I have lived in for 33 years than I do would just break me at this point.

    I have not been able to function since April and I really just want my life back.

    Bobbi
    Participant
    Post count: 1324

    One thing I have found helpful, Lavender, when my doctor tells me something "isn’t thyroid," is to turn things back by saying, "OK. Then what IS going on???" I mean, it doesn’t really matter what it isn’t, provided the doctor continues to puzzle out what the problem IS being caused by. As you have found, when the doc says, "It isn’t thyroid," he/she is essentially done pondering the problem. You have to get him/her jump started back to problem solving mode.

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