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  • My ENDO appointment... QUESTIONS???

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    Old 02-02-2012, 05:17 PM   #1
    Navy0Wife
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    Question My ENDO appointment... QUESTIONS???

    I saw an ENDO on Tuesday. I had a very bad experience. She was completely unempathetic, not concerned about any of my symptoms, did not discuss reason for any of my results and was only interested in taking more blood work. She also told me that she did not know if I have cancer or not because she told me that my nodules are too small to biopsy.

    The ENDO called me today with the blood work results and said that there is nothing wrong with my thyroid despite the results from my ultrasound, uptake and scan. She said "your thyroid is fine, maybe you feel like you are choking because you have a lung problem." Due to my experience on Tuesday I had already requested a new doctor. My new doctor appointment is this Tuesday.

    The reason for this post is to try to find some clarity with the symptoms and results that I have received. Will you please take a moment to look at my results below? My results are all ABNORMAL although my blood work has been determined to be NORMAL. Is the goiter causing me to have thyroid symptoms? Why are my results from the ultrasound, scan and uptake ABNORMAL while the blood work is NORMAL? Is there a possibility that I have cancer? Is it likely that I actually have a problem with my pituitary gland? I am very confused and very sick! Any insight that you can provide to me would be wonderful!!!!

    1. Blood work - NORMAL
    TSH 2.3 uU/mL
    Thyroxine Binding Globulin 7.0 ug/dL
    RESIN T3 UPTAKE, SERUM 31.8 %
    RESIN T3 UPTAKE RATIO 1.06
    Free Thyroxine Index 2.2 ug/dL


    2. Ultrasound - ABNORMAL:
    The thyroid gland appears heterogeneous in echotexture and enlarged in size. The right lobe measures 6.4 x 2.1 x 2.8 cm. The left lobe measures 7.1 x 1.7 x 2.7 cm. The isthmus lobe appears also thickened, measuring 0.47 cm. There multiple small hypoechoic nodules, most likely cystic nodules are scattered in both lobes. The largest nodule in left lobe measures 0.6 x 1.1 cm with small internal echo in the mid pole. The largest nodule in right lobe measures 4 x 9 mm in anterior midpole.

    IMPRESSION:Heterogeneous appearing thyroid parenchyma with diffuse enlargement and multiple small hypoechoic nodules through out, most likely consistent with goiter disease.


    3. Thyroid Scan and Uptake - ABNORMAL
    Two hours uptake 15 % (normal range 0-10%)
    Six hours uptake 32.5% (normal range 10-18%)
    24 hours uptake 42.4 % (normal range 15-35%)
    The thyroid gland is of abnormal size and demonstrates intense, homogeneous accumulation of radioiodine, with complete suppression of background activity.

    4. Symptoms:
    o Fatigue/ Lethargy
    o Emotional instability
    o Low endurance
    o Slow speech
    o Slow thinking
    o Poor memory
    o Poor concentration
    o Depression
    o Nervousness
    o Anxiety
    o Loss of appetite
    o Worrying
    o Prolonged menstrual bleeding
    o Heavy menstrual bleeding
    o Painful menstruation
    o Infertility
    o Miscarriage
    o Easy emotional upset
    o Obsessive thinking
    o Low motivation
    o Low sex drive
    o Dizziness
    o Dry skin
    o Dry mucous membranes
    o Fineness of hair
    o Hair loss
    o Weight gain unexplainably
    o Dry, coarse, brittle hair
    o Coarse skin
    o Muscle pain
    o Heat intolerance
    o Joint pain
    o Carpal Tunnel
    o Non-restful sleep/interrupted sleep
    o Insomnia
    o Poor vision
    o Sparse eyebrows/eyelashes
    o Choking sensation
    o Shortness of breath
    o Paleness of skin
    o Hoarseness
    o Difficulty in swallowing
    o Sensation of cold
    o Rapid heart rate
    o Vague body aches & pains
    o Decreased/Increased sweating
    o Night Sweats
    o Pounding heart beat
    o Heart palpitations
    o Swollen glands
    o Swollen lymphnodes
    o High cholesterol
    o Low Vitamin D
    o Diarrhea
    o Low body temperature

    Thank you very much for reading and I appreciate any information that you can provide to me. Take care!!!

     
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    Old 02-03-2012, 03:56 AM   #2
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    Re: My ENDO appointment...QUESTIONS???

    Even though you didn't have all the right tests run, your bloodwork (and symptoms) clearly show that you are suffering from hypothyroidism.

    The two uptake tests and the index are calculations so, not very useful. But, your TSH > 2.0 indicates hypothyroidism - the doctor should know this.

    And, the doctor should have tested your actual thyroid hormone levels:

    FreeT4 (T4 or thyroxine, free, direct)
    FreeT3 (tri-iodothyroinine, free, serum)

    I'm confident that either/both of these results will be below mid-range. Most healthy people have FreeT4 and FreeT3 levels in the upper half/upper third of the range.

    The uptake scan is probably abnormal due to all the nodules you have. And, as I already told you, please get the cancer notion out of your head - it is highly unlikely (the incidence is like 3%). It's singular nodules that are most often cancer. You have multiple, small nodules. Even the large one isn't the size that would usually be biopsied. Most ENT's would have you get a followup ultrasound in 6 months.

    I'm glad you will be seeing another doctor. And, if you don't get a diagnosis of hypothyroidism, I suggest you see yet another doctor. Many of us have had to see several doctors before getting a proper diagnosis/treatment. It is worth every effort.
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    Old 02-03-2012, 07:45 AM   #3
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    Re: My ENDO appointment...QUESTIONS???

    Quote:
    Originally Posted by sammy64 View Post
    ... if you don't get a diagnosis of hypothyroidism, I suggest you see yet another doctor. Many of us have had to see several doctors before getting a proper diagnosis/treatment. It is worth every effort.
    Agreed. And don't think your odds are improved by seeing an endo. You're probably least likely to get diagnosed by an endo. That specialty is full of the kind of jerks you just encountered. Ten years ago, I might not have believed she talked to you the way she did, but I see it here all the time and can easily believe it now.

     
    Old 02-03-2012, 01:15 PM   #4
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    Re: My ENDO appointment... QUESTIONS???

    UPDATED LAB RESULTS:

    Thyroxine (T4) Free, Direct S = 1.13
    TSH = 1.86
    Thyrotropin Recepter Ab, Serum = <0.51
    Thryroid Stim Immunoglobulin = 46
    Thryroid Peroxidase (TPO) = 9
    Triiodothyronine, Free, Serum = 3.1

    According to the lab used, I am in range for everything. Any thoughts would be greatly appreciated!!!! XOXO.

     
    Old 02-03-2012, 01:17 PM   #5
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    Re: My ENDO appointment...QUESTIONS???

    Thanks Sammy!!! I just added my lab results from my Tuesday ENDO appointment. Your thoughts are greatly appreciated!! Have a wonderful day. Thanks again for all of your help.

     
    Old 02-03-2012, 01:37 PM   #6
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    Re: My ENDO appointment... QUESTIONS???

    While the ranges for TSH are pretty much universal, this doesn't apply to thyroid hormone levels.

    Please supply the ranges for the FreeT4 and FreeT3 results and we'll then be able to properly interpret them.
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    Old 02-03-2012, 01:41 PM   #7
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    Re: My ENDO appointment... QUESTIONS???

    Hey Sammy,
    Now I am super confused. Did you see these labs??? See right below. She also did a CBC, and a metabolic panel. I don't see T3 free just T4 Free (below). Have I still not had the proper tests?? So frustrated.

    Thyroxine (T4) Free, Direct S = 1.13
    TSH = 1.86
    Thyrotropin Recepter Ab, Serum = <0.51
    Thryroid Stim Immunoglobulin = 46
    Thryroid Peroxidase (TPO) = 9
    Triiodothyronine, Free, Serum = 3.1

     
    Old 02-03-2012, 02:57 PM   #8
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    Re: My ENDO appointment... QUESTIONS???

    You did have the proper tests....if you look at one of my earlier posts, I showed you how the FreeT4 and FreeT3 tests might look on a lab report:

    FreeT4 (thyroxine, T4, free, direct)
    FreeT3 (triiodothyronine, free, serum)

    I was asking you to post the ranges for each result.

    Since different labs use different ranges, we need to see the ranges your lab uses to properly interpret the results.

    The ranges are usually listed to the right of the result. They might be referred to as "reference ranges" or "interval ranges".

    The other test results you listed (with the exception of TSH) are antibody test results and they, too, have ranges (or some indication as to what is considered "normal")

    Once you fill in those blanks, we'll be all set.
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    Last edited by sammy64; 02-03-2012 at 02:58 PM.

     
    Old 02-03-2012, 03:48 PM   #9
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    Re: My ENDO appointment... QUESTIONS???

    Goodness...it has been one of those days. So sorry!!!



    Thyroxine (T4) Free, Direct S = 1.13 (0.82 - 1.77)

    TSH = 1.86 (0.450-4.500)

    Thyrotropin Recepter Ab, Serum = <0.51 (0.00 - 1.75)

    Thryroid Stim Immunoglobulin = 46 (0-139%)

    Thryroid Peroxidase (TPO) = 9 (0-34)

    Triiodothyronine, Free, Serum = 3.1 (2.0-4.4)

     
    Old 02-03-2012, 04:11 PM   #10
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    Re: My ENDO appointment... QUESTIONS???

    Thanks so much for providing the ranges.

    OK....we'll talk thyroid function first

    While your TSH is in-range, it's higher than the type of TSH level a healthy person would have which is 1.0 - 1.5....this can indicate hypothyroidism.

    Since TSH is actually a pituitary hormone, thyroid function is confirmed by looking at the actual thyroid hormone levels - FreeT4 and FreeT3.

    Most healthy people have FreeT4 and FreeT3 levels around 60-80% of range.

    Based upon your lab's ranges, this would mean FreeT4 1.4 - 1.6 and FreeT3 3.4 - 3.8.

    So, you can see that both your FreeT4 and FreeT3 levels are lower than the types of levels healthy people have - you are hypothyroid.

    Now, we'll go over the antibody tests.....

    TPOab's (Thyroid Peroxidase antibodies) are seen in all forms of thyroid disease - your level is lower than what is most commonly seen in Hashi's but, TPOab's are really markers of thyroid inflammation so, as of now, your thyroid isn't too bad.

    Thyrotropin Receptor Ab's are seen in Graves' so, you can see you have a very low level. A result higher than 1.75 could indicate Graves'. Thyrotropin Receptor Antibodies (called TRab) include a few types of antibodies, including TSI (thyroid stimulating immunoglobulin) which you also had tested.

    Now, your TSI (thyroid stimulating immunoglobulin) result presents an interesting scenario.

    Please know that healthy people would have a level < 2. Based upon your lab's ranges, most people with levels > 139% would have Graves'-induced hyperthyroidism since TSI antibodies stimulate the thyroid to produce excessive amounts of hormone.

    The fact that you have measurable TSI *might* cause you hyper symptoms even though you are basically hypothyroid.

    You see, when a hypothyroid person has lower levels of TSI, the TSI will erratically stimulate the thyroid to produce hormone - this is what causes periods of hyper symptoms (yet labs will always show hypo).

    Since most cases of hypothyroidism are caused by Hashimoto's thyroiditis, the presence of TSI changes the diagnosis to "Hashitoxicosis".

    You might want to read a recent thread titled "Graves Burn Out" - HypoT - Elevated TSI. The original poster has realized that she has Hashitoxicosis and some really good discussion happened on that thread.

    And, you might want to read some of the other recent threads initiated by the original poster. I suggest this so you can see if you've been having similar experiences because this will help with your treatment protocol.

    You definitely need some thyroid hormone replacement such as Synthroid/levothyroxine since you are hypothyroid.

    And, it will be in your best interests to try to reduce your TSI level. I shared some suggestions on how to do this on that other thread.

    I hope you don't mind me asking you to read it but, a lot of great information was shared on there and I think you will benefit from reading about another person's experience.
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    Last edited by sammy64; 02-03-2012 at 04:58 PM.

     
    Old 02-08-2012, 11:30 AM   #11
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    Re: My ENDO appointment... QUESTIONS???

    I can so empathsize - been dealing with docs and thyroid disease for almost 30 years. have all the hypo symptoms and keep gaining weight while I eat a perfectly sane and sensible diet and they keep saying - you are in normal range - I had the gland surgically removed 22 years ago and they have never regulated me well since. I am the heaviest I have ever been - now fighting RA on top of it - both the families autoimmune diseases. My poor 20 year old daughter is now having issues and is on low dose of synthroid.

    I was having trouble swallowing and shortness of breath and hairloss again and insisted on an ultrasound - sure enough the little b*tch is growing back - there is active tissue on both sides - I am scared to death and getting no answers - going to see a new endo and see if I can't get some real help

    good luck to you

     
    Old 02-08-2012, 01:31 PM   #12
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    Re: My ENDO appointment... QUESTIONS???

    Drivinriane - Oh my goodness...I am so sorry for what you and your daughter have been going through. Looking back I have been having problems since high school and worsened while I was in college. Pregnancy pushed me over the edge. I feel like a hot mess. Get a new doctor. I went through two in CA and two in VA until finally finding a doctor who listened and cared to help me.

    I have heard of thyroids growing back. Are you going to have the new thyroid tissue removed or are you going to try to regulate it with meds? I will keep you in my prayers that you are better very soon. Take care and keep me posted.

     
    Old 02-08-2012, 01:51 PM   #13
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    Re: My ENDO appointment... QUESTIONS???

    [QUOTE=sammy64;4922185]


    Since most cases of hypothyroidism are caused by Hashimoto's thyroiditis, the presence of TSI changes the diagnosis to "Hashitoxicosis".



    Sammy - THANK YOU SO MUCH!!! I am sorry that it took me days to reply. I have been researching Hashitoxicosis like a CRAZY person. I also researched the hek out of the bell curve for lab reports and how the curve is actually made. I feel so much better knowing what is going on with me.

    I half liked and half disliked the new ENDO. She spent two hours with me. She visibly saw my hands trembling and saw my hyper symptoms (hot flashes, sweating). She listened to my concerns and symptons and seemed to really care although she does not think that Hashitoxicosis is a "real" diagnosis. She did say however, if she did believe in it that it would be very difficult to treat. My research has confirmed similiar instances.

    My ultrasound report was wrong. She took the time to review all of my reports and images from the actual procedures. The nodules that I have are 2+cm. She ordered a FNA but is not concerned. She thinks they are cysts. She also ordered a CT and several other tests. She is going to test my adrenal function and test me for vitamin deficiencies.

    She told me that my thyroid is one of the "largest" that she has ever seen. She thinks that it is bigger than what the ultrasound is even showing due to equipment limitations (reason for CT). She recommends the thyroid to be removed due to the size and she could here me "whistling."

    I know that you have helped a lot of folks on the message board. Have you ever seen another case where bloodwork was in range and a person had a giant goiter? If so, did that person have terrible hyper/hypo thyroid symptoms? The doctor I saw has been practing for 10 years. I don't think that she has ever had a case like mine. Thank goodness she will not be removing my thyroid.

    I did discuss levels with her, as far as after surgery, and she believes that a person healthy level does fluctuate on the bell curve. She told me that she works with her patients to rid thyroid symptoms. She said some might appear "hyper" to her but the patient feels great. I might stick with her because she seem to be willing to experiment.

    Thank you so much for all of your insight. You are amazing and truly a blessing to me. THANK YOU!!!

     
    Old 02-11-2012, 05:10 PM   #14
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    Re: My ENDO appointment... QUESTIONS???

    I am so blessed to have found this message board!!!! I feel so much better to actually know what is going on with me. Chatted with my ENDO nurse on Friday and the referral will be back in a few days for my CT, FNA and TT. Feeling anxious and relieved at the same time. Sigh...

     
    Old 02-12-2012, 04:22 AM   #15
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    Re: My ENDO appointment... QUESTIONS???

    somewhere in your text she does not think that Hashitoxicosis is a "real" diagnosis it sure does not come out of an alternative corner. it's not because it's less standard, that it's less real. Hashitoxicosis is the term used in medical literature such as thyroidmanager and pubmed.

    I can understand you feel anxious and relieved at the same time. hang in there!

     
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