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    Old 05-30-2005, 02:30 PM   #1
    OraEtLabora
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    Red face Terrified of thyroidectomy

    Hello Everyone!

    I am new here. Have been reading the post for the past several days, and am struck by the amount of human suffering caused not only by thryoid disease, but also by failure of the medical profession to properly recognize and treat it.

    I was dx last year, after 18 years of misery and disability, with Hashi and adrenal fatigue. Currently, I see a wonderful Holistic MD who is treating me with Armour, as well as bio-identical hormone replacement therapy. For the first time in 18 years, I am beginning to feel some hope that I might start to feel "human" again, and might even get back to work someday.

    Unfortunately, having gone over 18 years with debilitating hypothyroid/hyperthyroid symptoms, I now have related problems that the Holistic doc can't treat (heart enlargement, cold nodules, uterine fibroids to name a few). Had I been able to see him 10 years ago, much of these problems might have been prevented by him. But that wasn't possible, so I am now experiencing the health problems that result from undiagnosed/untreated thyroid disease. He has been able to reverse my osteoporosis!

    This year alone, I have had 3 surgeries already. One for my heart, and 2 related to my messed up uterus - total hysterectomy with removal of both ovaries.

    The hysterectomy was a nightmare, and as a result, I am terrified to have a thryoidectomy (highly recommended by ENT doc I have to see for my chronic inflammed inner ears, and throat). The REASON the hyster was a nighmare was because I ran a fever after the surgery, and rather than the surgeon consulting with my holistic MD, she called in an Endo who took me off my Armour for several days (my TSH was 0, and despite my Free T3 and Free T4 being normal, which I demanded be done when they got bent out of shape about the TSH, he concluded that I was severely hyper!). Then, he put me on half my Armour dose. I was also not allowed to take any of my bio-identical hormones for the entire 6 days I was in hospital. This sudden surgical menopause, and drop in thyroid hormones, resulted in my having panic/anxiety attacks, horrible hot/cold flashes, chlls, abdominal cramps, etc. I believe that most of this was due not to any sound medical practice (my fever remained, and I was sent home after 6 days still with the fever), but to philosophical differences in treatment of severe Hashimoto's (my TPO antibodies are > 25,600, so the Holistic MD chose to suppress the TSH, hoping for some Ab decline).

    It didn't stop there. The Endo who made these decisions about my treatment without consulting me to find out if I was experiencing any symptoms of hyper actually came into my room and began to verbally trash the doc who was treating me. He said he saw that 0 TSH and thought he was going to have to give me beta-blockers. I commented that my other results were normal, and he insisted that was only because he took me off my hormone (they are checked by the holistic MD every 6 weeks, so I knew they were normal before he took me off my hormones!). He kept telling me how dangerous it was to suppress the TSH, and when I told him I was feeling better than I had in 18 years, he said that was temporary and that my long-term health would suffer. I asked him to explain, and he said to come see if when I am discharged. So, I called to make an appointment with him upon my release, and he refused to see me!

    For the next 7 weeks, I experienced horrible hypo and menopausal symptoms, until my hormone levels came back up a little. I'm still experiencing extreme fatigue and muscle/joint pain. I don't believe any of this would have happened at all had the traditional docs respected, even a little bit, my holistic doc's (and mine) choice of treatment options. I fare SO MUCH better on the bio-identical hormones (no side-effects), having tried Levoxyl (terrible headaches) and synthetic HRT (headaches, breast tenderness, fluid retention, depression).

    Sorry this is so long, but my questions are these:

    1). My ENT wants me to have a thyroidectomy - says most of my troubles are due to the Hashi's. After my horrible hysterectomy experience, will those who have had their thyroid out think it would be worth it to have my thryoid out? Honestly, I wonder if I can even survive another surgery - I have lost so much faith in the medical profession, not only due to the total mis-diagnosis of my condition for over 18 years, but the unprofessional behaviour of the Endo in hospital. Did thyroidectomy help you with symptoms like burning/ringing in ears, constant sore throats, swollen salivary glands?

    2). Has anyone else experienced such prejudice and lack of respect for a more holistic approach to thyroid treatment?

    Thanks for your advice. This board is wonderfully informative and helpful!

    OraEtLabora

     
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    Old 05-30-2005, 02:40 PM   #2
    AprilPow
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    Re: Terrified of thyroidectomy

    Docs trash anything that isn't what they would do. So, I am not surprised he freaked out like that. It sounds like your Holistic doc is treating you very well. If I understood correctly, your holistic doc recommended getting your thyroid out? or a different doc? If it was NOT your holistic doc then i would ask him what he thinks of it all.

    It did help with my sore throats (having my thyroid out) but I didn't have the other problems you mentioned. (salivary glands, ringing in ears, etc)

    I would talk first to the doc you trust and go from there. Don't be rushed into things. If you are feeling better maybe you should wait and see.

    Sorry I couldn't help more!
    April

     
    Old 05-30-2005, 02:58 PM   #3
    OraEtLabora
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    Re: Terrified of thyroidectomy

    Thanks, AprilPow,

    My holistic doc didn't want me to have the hysterectomy, but after I continued to bleed for over 4 months, he conceded that I was too far gone and he couldn't help me, so agreed that the hysterectomy was warranted. He suggested I keep my ovaries, but the GYN's talked me into removing them (and I regret that, now). So, when I asked him about the thyroidectomy, he suggested the ENT "might know something we don't know" and that I should ask him a lot of questions. Unfortunately, this ENT acts like I'm an idiot who wouldn't understand, so he rarely says a word to me - I find out stuff by asking the office staff after he leaves the examining room! Or, I get copies of all my tests, etc. He's just a very poor communicator - at least with me.

    The sore throats you had - were they sore like from a strep infection, or sore like sore muscles? I have both - feels like I have a bacterial infection, where the back of my throat burns, and my whole neck is sore, like someone hit me with a baseball. It's been like that for 18 years!

    Thanks again for your help!

    OraEtLabora

     
    Old 05-30-2005, 11:03 PM   #4
    diddy
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    Re: Terrified of thyroidectomy

    Get it removed.

    You will feel better mentally knowing the troublesome gland is no longer in your body. It is a very painful surgery for about a week after, but you live through it.

    I was scared about getting mine out too, but glad I did. I'm 1 week post-op and feel OK, but of course my levels will have to be leveled out.

    If you have all those symptoms, get the thing out.

     
    Old 05-31-2005, 06:24 AM   #5
    AprilPow
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    Re: Terrified of thyroidectomy

    Yes, my throat neck hurt, I think b/c my gland was swollen and pushing on things. If I were you- I'd get a 2nd opinion. Your ENT doc doesn't sound very nice so why not ask someone else to just be safe? Afterall you are removing something that you can't ever put back. Then of course you have to deal with more hormones.

    I know Diddy had a different experience with surgery but I wouldn't say it was "very painful". On a scale of 1-10 (10 being you can't take it anymore) I'd say it was about a 4. I had my appendix out and I would give that about a 7. Childbirth- about a 9. lol I think I have a pretty high tolerance for pain too.

    April

     
    Old 05-31-2005, 09:30 AM   #6
    OraEtLabora
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    Re: Terrified of thyroidectomy

    Thanks for all your help, Diddy and AprilPow. I think the main reason I
    want it out is because of the extremely high antibody titre - my TPO Ab's are >25,600, and I believe that is why I always feel like I have "Super Flu." I guess I was hoping I could relieve most of my symptoms by just taking Armour, but it hasn't been the case....

     
    Old 05-31-2005, 09:51 AM   #7
    bjm32
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    Re: Terrified of thyroidectomy

    Hi! I'm a newbie to this board but I just wanted to share with you that I had a thyroidectomy 2yrs ago. I "put off" the surgery for 3yrs. I, like you, had a couple of different surgeries and had complications that I believe was due to poor medical care. I lost all my faith in the medical profession. Not having the surgery caused me panic attacks because I thought I was sufficating (had large cold nodules on the left and multi-nodular goiter on the right) and I couldn't take it anymore so I told my endo that I wanted to see a surgeon who specialized in this. I met my surgeon at Mass Eye and Ear and I had complete faith in him. All the other surgeons I saw just wanted to hurry up and cut, cut, cut. This man was very patient with me and I was terrified of the surgery but it all turned out great. The pain wasn't bad and the recovery wasn't bad either. I felt so much better afterwards just knowing that it was finally gone. I certainly haven't been through the complications that you have, but can completely understand your hesitations. Is there a specialty hospital that you could go to? I'm not at all familiar with holistic medicine but you sound like you trust that doc's opinion, maybe he/she can help you find a competent surgeon?? Good Luck...~Bunny

     
    Old 05-31-2005, 10:06 AM   #8
    OraEtLabora
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    Re: Terrified of thyroidectomy

    Thanks, bjm32, for sharing your story. And welcome to the board, from one newbie to another. I have found this board so helpful, just reading the old posts.

    I'm glad you had your surgery, and that you feel better. You've helped me by sharing your story. I'm pretty limited by my insurance. I'm disabled, and have an HMO that limits my choice of doc, hospital, etc. n The Holistic doc I see is not covered by my insurance, so he is waiving his fee for me - I still have to pay for the labs, and meds. This doc truly cares for his patients, I can attest to that!

    I guess my biggest fear is that I will feel worse after the surgery - that somehow, I'll end up with hyper or hypoparathyroidism, which I don't have now. My level of misery is so high now, I just couldn't stand anymore symptoms! I never had anxiety or panic attacks, but since my hysterectomy, I've been having quite a few, although they have subsided somewhat since I am getting my thyroid back where it was "pre-surgery." But I still have a couple a week, and they are so upsetting, since I didn't have them before surgery. I guess I'm afraid they will be much worse after thyroid surgery....

    Thanks again for your help. I hope you continue to feel well!

    OraEtLabora

     
    Old 05-31-2005, 10:15 AM   #9
    linda115
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    Re: Terrified of thyroidectomy

    I had a total hysterectomy 7 years ago. The experience was very bad. Took a long time to recover. My thyroid problem started five years ago. I had thyroid surgery this Feb for goiter and nodules. Only the left side was removed. Pain was minimal. Stayed one night at the hospital. Recovery was not bad at all.

    This is my take on holistic medicine. Think of holistic medicine as a furniture polish; it can make the furniture shine and restore its dull finish. However if the furniture is broken, it needs to be fixed by other means. The furniture polish will not make it. After it's being fixed, then you can put polish on it again.

    Blessings,
    Linda

     
    Old 05-31-2005, 03:04 PM   #10
    OraEtLabora
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    Re: Terrified of thyroidectomy

    Thanks, linda115. I'm sorry your hysterectomy experience was so bad! Thanks for sharing your thyroidectomy experience - it helps to know that your recovery was not bad. Are you currently taking thyroid hormone, and have you had any thyroid symptoms since your surgery?

    I guess I feel about traditional medicine the way you feel about holistic medicine. At least it has been my experience that traditional docs treat the symptoms, but don't even try to find the root cause. Had they found my thyroid problem and treated it, I don't believe I would have needed all the other things, like anti-dep, anti-anxieties, anti-siezures, sleeping pills, narcotics, etc. The Holistic doc fixed, for me, what was broken, or at least he got to the heart of it - a really messed up thyroid gland, and some really fatigued adrenals.

    Have you had a bad experience with holistic medicine?

     
    Old 05-31-2005, 03:42 PM   #11
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    Re: Terrified of thyroidectomy

    I am not on any thyroid medication right now. After the removal of the left thyroid, my right thyroid seems to be functioning normally once again. My T4 & TSH rose to the optimal levels. So, I don't need to go on thyroid medication. In my case, my goiter and nodules were benign, so it's less complicated.

    During my years of thyroid problems, I did see a Chinese herbalist for treatment. I find the herbs very potent. I have side effects but it was hard to figure out the interactions since each formula contains so many different kinds of herbs. After several months of treatment and going nowhere, I decided to discontinue the treatment.

    Today, I feel strongly that it's risky to take any medication (whether it's drug, herb or supplement) without blood test monitoring. Symptoms do not give the full picture. Blood tests do. If I can find a holistic doctor who will use blood tests to monitor the progress regularly, I would feel safer.

    Since thyroid symptoms overlap with other causes not related to thyroid problems. e.g. my poor diet, lack of exercise, stress, etc., I have made changes in my life style and am doing well. The only medication that I am taking is for blood pressure, bone loss and cholesterol. Hopefully my health will be well enough to stop the medications in the future. In the meantime, I am enjoying my new life and a better body. I hope you will too.

    Blessing,
    Linda

     
    Old 05-31-2005, 08:14 PM   #12
    OraEtLabora
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    Re: Terrified of thyroidectomy

    That's great that your right lobe is compensating for the left lobe! My left lobe is almost gone from years of Ab attacks, and the right lobe looks like a dog chewed it, so my entire gland is pretty well done for. I guess that's why I wouldn't miss it too much if I had it removed.

    I agree with you totally - it is dangerous to be taking meds, etc, without some type of blood/saliva/urine monitering. I just cringe when I hear products being advertised that people buy and take without even knowing if they are deficient in that element. I was a lab technician for 17 years before I got so sick I couldn't work, so I could not take anything without at least knowing my baseline. My holistic doc is a MD, so he moniters my levels every 6 weeks, and doses are adjusted accordingly. The great part about him, over more "traditional" MD's is that he isn't married to the lab values. He prefers to keep me in the upper 1/3 of normal, but is willing to go a little higher if it is the difference between me being functional and me not functioning. In contrast, my former Endo didn't care if I was bed-ridden - she wouldn't up my dose one iota, which is why I quit seeing her.

    I think your best bet, if you are looking for a holistic doc, is to try and find one who is an MD, or a DO, or has had traditional training. That way, you get the best of both worlds!

    Thanks again for the input. I tried Chinese herbs on my own about 15 years ago, and it was diarrhea city for days after just one dose! I get chills just thinking about it!

     
    Old 10-12-2006, 12:38 AM   #13
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    Re: Terrified of thyroidectomy

    Don't be alarmed by the thryoidectomy. I had surgery to remove an annoying goiter (I had complained to many doctors over the years of hypo symptoms, but my TSH levels were always within the too-generous "normal" range) and thank God I did, because it was discovered AFTER the surgery that I had numerous, very tiny, cancerous nodules. I had a great surgeon, the scar is itchy but not bad, and I regained my voice fully after several weeks. I have done the radioactive iodine treatment, also no big problems. Some people aren't so lucky, but it's better to deal with these things as soon as possible, because they DON'T get better on their own. But since the surgery (4 months now) my fingernails are growing strong and healthy, which they haven't done in 30 years!

    I felt really awful just after the surgery - every pill they gave me made me dizzy and nauseous. I slept a lot, and would get weird rushes of energy - fine at 1pm, when you can get lots of housework done, not fine at 1am, when you're lying in bed. Very important to take the synthroid BY ITSELF, not with food - then it becomes a digestive enzyme. Get up in the middle of the night to pee and take it then, so you can have breakfast like a normal person. We're still increasing my synthroid dose - gradually, so my body can adjust.

    Granted, you've had some bad experiences with medical docs over the years, who hasn't? Unfortunately, the standard medical training encourages doctors to dismiss anything they don't understand as "all in your head". If we can't identify it (yet), it can't be real, and therefore can't really be causing any symptoms, right? I wish the human body was that simple. I believe medicine still has a lot to learn - after all, Chinese medicine has been treating people holistically for centuries, and there are 1.3 billion of them! However, surgery is still necessary in this world.

    For years, doctors didn't know what to do with me. I had environmental allergies, but this was nothing compared to people with severe peanut or shellfish allergies. I was sick (flu-like symptoms) more than anybody else I know, but I'm stubborn and was able to work - it's impossible to get disability anyways, and I've always had to earn a living. It was only at my insistence a few years ago that my doctor continued searching for what was really wrong with me, and we discovered I have Celiac disease! Now on the gluten-free diet, I don't need allergy pills 24/7 to be functional! So now I have to take synthetic thyroid hormone for the rest of my life? No problem! At least now, I will get to have one![url]http://www.healthboards.com/boards/images/smilies/wave.gif[/url]

     
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