The THYROID Thread

Discussion in 'Coping and Compassion' started by Christine, Nov 11, 2006.

  1. Christine

    Christine Would love to be able to sit on

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    Cool! Sounds like a dream job.
     
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  2. luvmarypoppins

    luvmarypoppins <font color=darkorchid>I am debating whether to pu

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    singing mom - have a great trip and that is so great about your d d's job!

    macraven - have a great trip too! Of course I want to hear all about the food!

    Christine - how is your back?

    had the sono and blood tests. The sono gal said she didn 't see anything unusual. Also said I am one of her "regulars". I said - unfortunately yes lol!

    Dh leaves for Houston wed. Now d h cousins husband died. He had legionnaires disease.

    Next up endo in 2 weeks and mammo when I find the script.
     
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  4. Christine

    Christine Would love to be able to sit on

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    LMP--the back is finally doing well. I don't need a bandage anymore but I'm supposed to have vaseline on it constantly, so at least during the day, I am globbing on the vaseline and putting a bandage/tape over it. It's looking pretty good all of sudden. I have 5 more days of restricted activity then I can get back to some form of exercise.
     
  5. squeegee

    squeegee DIS Veteran

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    I didn’t realize how long it had been since I checked in here. I’d never even finished my 2015 trip report! I’ll whack myself on the nose with a rolled up newspaper next time I find a newspaper.

    I’ve been up to mostly the same old stuff. Dreaming of Disney world, working, and helping friends plan their trips.

    Thyroid stuff - the doctors tried to kill me in early 2017. My blood sugars were rising, so they put me on metformin. Turns out, that binds thyroid meds, so I went severely hypo but it took them 2 months to figure it out and another month for me to recover. That was fun.

    Took the plunge last month and had a gastric sleeve done. Had to get rid of the diabetes somehow, and the sleep apnea, and the fatty liver, and a host of other problems. Down 25 pounds, and averaging a half pound a day for now. No major complications, thank goodness. When I hit goal (125), I’m going to book a trip, come h*ll ornhih water.

    Glad to see some familiar names still here, and it’s been great to read what everyone’s been up to. I’ll try to be a better DIS-er and check in more often. :)
     
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  6. luvmarypoppins

    luvmarypoppins <font color=darkorchid>I am debating whether to pu

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    squeegee - good to see you again. Sounds like you have a great plan and are on the way to good health. That must have been scary with that med. Bet your dd must be getting big. I miss Texas. Dh just got back from a business trip to Houston.

    well my endo visit was today. Sono was great. Tg was .15. She said the lab didn't do the right tg test so she is calling them. She only wants to test for tg antibodies since my tg markers are useless.

    asked me why I was using the walker. Told her I can't breathe well, had the pft test and primary never discussed it with me. Well low and behold primary dr nurse leaves me a message to call. I love my endo!!! She gets stuff done!

    Dh is going to Minnesota next week and then the West coast early November. My food and wine window of opportunity is not much, sigh.
     
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  7. luvmarypoppins

    luvmarypoppins <font color=darkorchid>I am debating whether to pu

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    Oops I typoed. My tsh was .15.
     
  8. squeegee

    squeegee DIS Veteran

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    TSH sounds pretty low. Have they made any dosage adjustments? Or is that what they’re aiming for? Mine is kept low because of the cancer thing, but the endo plans on aiming for a more “normal” range later.
     
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  9. Christine

    Christine Would love to be able to sit on

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    LMP, my TSH has been running at about .40 for quite some time now. If I get any lower than that, I really don't feel well. But my thyroid cancer was fairly low-risk/lazy type so that's why I get a little leeway there. What is the "pft" test?

    squeegee-welcome back!!! That sounds awful about the metaformin binding to the thyroid stuff. I had that happen many years ago with oral contraceptives. My TSH went from it's current low levels up to 8.0 in a matter of 6 weeks. No matter how much thyroid meds I added, it just wouldn't go down. It's known that thyroid hormone binds with estrogen (which is why you will need a lower dose in menopause) but it seemed to bind REALLY well in me! I'm definitely always an odd case when it comes to medication. My doctor says I have one of those livers that is a slow metabolizer. People can be slow, normal, high, or ultra. With a slow metabolizing liver you feel side effects more and drugs stay in your system longer. It's probably why I don't do well with alcohol.

    Good to hear the gastric sleeve is working for you. Based on your weight loss, it doesn't sound like you were severely overweight. Do they do that procedure for any amount of weight? That's awesome to lose .5 lb a day. I'm struggling to lose .5 in 2 weeks!! I know what to do to get there, but it's hard to only eat 1400 calories a day. I guess the sleeve makes that more manageable?
     
  10. squeegee

    squeegee DIS Veteran

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    My BMI was 37 when I started the process. They require a BMI of 35 WITH weight-related comorbidities or a BMI of 40.

    It’s a tool to help me keep it off long-term, a forced restriction. I’m consuming 400-600 calories a day, and it’s a struggle to eat that much. Have to be sure to get 64 ounces of fluid and 65 grams of protein a day, and it’s tough when you can only manage 2 ounces food at a time.

    I’ve already come off the heart medications, and I’m no longer diabetic. So, for me, it’s about getting rid of the comorbidities, not just being thin. I’ve never cared about being thin, but the sicknesses (on top of having had cancer) were just too much. I’d tried every diet imaginable and just couldn’t keep weight off long term.
     
  11. Hook326

    Hook326 Mouseketeer

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    Hello! I’m new to this thread and new to thyroid issues. I tried looking at a forum specific to thyroid issues but it got a bit overwhelming as I’m not familiar with all the abbreviations and lingo yet. I was hoping you all might be able to give me some info in a more manageable way if that makes sense :flower:

    I went to the dr because I had a lot of signs pointed towards something going on with my thyroid that started approx a month ago. I got an ultrasound last week and it shows my ithsmus slightly enlarged at 6mm and a “largely cystic complex lesion measuring at 12mm”. From what I’ve read that’s considered big and I do feel a lump when I swallow.

    I have a thyroid scan uptake scheduled in a week and a half.

    I’m just wondering if anyone has an idea based on their experience on what the normal route is for a situation like mine? Is surgery pretty much a given? I’m not expecting medical advice just experiences. Thank you!
     
  12. Christine

    Christine Would love to be able to sit on

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    Welcome!!! There's a couple of normal scenarios here but generally it could be:

    1. Watch and wait (have an ultrasound annually to see if it continues to enlarge, or
    2. Have a fine needle biopsy of the cyst and possibly ithsmus (man, that's an awkward word).

    The thyroid uptake scan will tell if the nodules are hot or cold functioning. Cold functioning is normally indicative of a cancer. Honestly, I didn't realize they were still relying on uptake scans (I had one but that was back in the 1990s).

    I think most thyroid experts would advice for #2 considering the size of your cyst. Doesn't mean it's cancer but benign or not, who wants a 1 cm. lump in their neck.

    My best friend had a huge lump that came up suddenly. They watch it for a few months. Honestly it was just disturbing to look at. She had a biopsy first which came back clear; however, due to it's size (and she had other smaller lumps), the doctor decided on a full thyroidectomy. All her lumps were benign but they found some "micro" thyroid cancer in the gland so it was just as well she had the gland out.

    Feel free to ask more questions and post back when you get farther along. Also, if you reply to this thread, be sure to quote this response so I'll get an alert. This forum is a little slow moving so I might not check it for a few days so an alert will clue me in to come back.
     
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  13. siren0119

    siren0119 Mouseketeer

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    Just found this thread but don't have time to read through all the past posts yet!

    I have Hashimotos Hypothyroidism, diagnosed about a year after my youngest son was born (he's now 9). But looking back over my medical records and stuff I had been dealing with prior to diagnosis, my MD and I figure things had been going south for almost 10 years before that. It's so underdiagnosed because symptoms mirror so many other things. My pet symptoms are digestive issues, hair loss, heart palpitations and fibromyalgia-like pain.

    Because my hypo is due to an autoimmune disorder, my TSH needs to be on the low end of normal for me to be asymptomatic - another reason it took so long to diagnose. My old PCP would see my TSH in a "normal" range and just call it good, even though I was on the upper end of normal and still feeling like crap. My new doctor doesn't just go by test results but asks how I'm feeling, what I'm noticing and takes into account that labs only tell part of the story.

    For now, my thyroid isn't too rigid, and if I keep my diet fairly free of grains and complex carbs my body is a lot less reactive and the immune response seems to be suppressed. No surgery needed yet (knock wood). Every day is a learning experience!
     
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  14. Hook326

    Hook326 Mouseketeer

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    Thank you for your response! I figured a biopsy would be coming at some point. In your opinion, is the thyroid uptake scan outdated? My cyst doesn’t protrude (yet?), I think it’s more pushing inward because I can feel it when swallowing. To remove a cyst is the only option to remove the thyroid too? They can’t just take out the cyst? Or was your friend’s dr’s concern it could be cancerous?

    I feel like a fish out of water with this so I really appreciate your responses.
     
  15. squeegee

    squeegee DIS Veteran

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    I’ve been dealing with thyroid cancer surgeries and treatments for the last seven years and didn’t have an “uptake” scan until after total thyroidectomy and iodine radiation, to verify they got it all out. They hopped straight to FNA/biopsy after the ultrasound.

    I know biopsy sounds scary - but it’s actually not all that painful and only takes a few seconds. Positioning your head properly is usually the most uncomfortable part (for me, anyway).

    As far as I know, they do not remove just a cyst. They can remove just half the thyroid in some cases, though, and some folks can get by with just the half left over.

    Keep in mind, too, that the vast majority of nodules/cysts are benign and it’s pretty normal for folks to have them, especially as we age.
     
  16. Christine

    Christine Would love to be able to sit on

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    I believe the uptake scan is outdated and unnecessary but it was a matter of course in the 1990s. Are you seeing an endocrinologist who specializes in thyroid issues?

    As squeegee said, you don't need a total thyroidectomy, but if you have multiple cysts (as my friend did) they generally remove the whole thing or you will just end up having more trouble down the road. Also, if they have any suspicion it's cancer, they like to remove the whole thing.

    I had all my stuff done in 1994. Thyroid cancer was much more rare then and no internet to learn anything. Mine had a very rare chance of being cancerous, so I only had a lobectomy. Even on the operating table, the biopsy came back benign. After the full pathology was done; however, I got the cancer diagnosis. I then had to go back in for surgery 2 weeks later to get the rest of the gland removed. I had no more cysts in there (although maybe the early signs of one) but the remaining half also had small sprinkles of cancerous cells in it. So had I not had the whole thing out, this would have gotten me later.

    Thyroid biopsies, unfortunately, are funny things. If a get a biopsy that is positive for cancer cells, you can consider that to be a good biopsy. If the biopsy comes back clear, it's actually not 100% guaranteed that you are clear. Kind of stinks, but that that's how it is.
     
  17. Hook326

    Hook326 Mouseketeer

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    Thank you both for your responses! I’ve been trying to do research to educate myself more. I’m not seeing an endocrinologist yet. I haven’t gotten that referral from my dr yet, I’m not sure why.

    So basically the uptake scan is to see if there is cancer? Tonight I’ve been making a list of endocrinologists and will call tomorrow to see if I can get in without a referral and if they recommend the uptake scan.

    This is quite overwhelming to navigate, I appreciate the help!
     
  18. Christine

    Christine Would love to be able to sit on

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    No, the uptake scan really isn't done for cancer. It used to be that, for some reason, they liked to see how the nodule was functioning. I just don't think there's a need for that sort of information anymore and the radiation used in the scan (while minimal) is unnecessary. It can also interfere IF you end up having thyroid cancer with the resulting radiation you might need later. I think that's why I asked if you were seeing an endo because they are more on the cutting edge of thyroid issues where a general practictioner is probably relying on information they learned 20 years ago. There's been a lot of changes in the past 10 years as to how thyroid nodules are assessed and treated.
     
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  19. luvmarypoppins

    luvmarypoppins <font color=darkorchid>I am debating whether to pu

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    it needs to be close to 0 as
    possible since I have the columnar cell aggressive variant.

    Also don't know if you got a chance to read the past posts but I had a recurrence last year and had to get lymph nodes in my r neck removed. this time I went to one of the top endocrine surgical oncologists in NYC.

    Oh and now I am non avid so no more rai for me, sigh.

    Sounds like the sleeve is working well for you. That's great!
     
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  20. luvmarypoppins

    luvmarypoppins <font color=darkorchid>I am debating whether to pu

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    siren0119 - welcome. I don't know too much about Hashimotos but I am learning quickly as my new daughter in law has it. Her symptoms and triggers are very similar to yours.

    Hook326 - welcome. Count me in with the rest about ??? The uptake scan. I would go with the fna too.

    And in my little thy ca world, sadly one of the rare group members passed away. She had bad lung Mets and has a 3 year old.

    New daughter in law was in hosp for 2 days. Lots of testing. No diagnosis, just hashimoto flair and symptoms

    Synthroid saga - pick up and see it's the wrong dosage only 6 days, they will call md
    2. No call in from md
    3. Friday I call md voicemail
    4. Mon. Call pharmacy and then md again
    5. Call pharmacy today. Yes Dr has called in correct script but now pharmacy out of synthroid:headache:
     
  21. squeegee

    squeegee DIS Veteran

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    I hadnt read too far back, no. So sorry to hear you had a recurrence and the neck dissection. Mine was the left side, modified radical, and it was a much harder thing to recover from than the thyroidectomy. *hugs*
     

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