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Hashimoto/hypothyroidism not showing up in tests
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Hashimoto/hypothyroidism not showing up in tests

My sister, mother and I all were diagnosed with Fibromyalgia and thyroid nodules. My mom's nodules are being watched and her FNB's are all negative. Her nodules are growing slowly but not enough to remove them but she is developing more each year. All of us were diagnosed with these nodules (and cysts) 2 years ago. All of our thyroid tests were within normal range. My sister just had her thyroid completely removed. FNB showed an inconclusive or suspicious result and she had a goose egged size nodule on her thyroid. They decided to remove the thyroid because of the suspicious result. When they went in they found that she had Hashimoto due to the color and texture (firmness) of her thyroid and she had a very very minute amount of cancer in her thyroid. Very beginning stages. Since removing her thyroid almost a month ago she has been pain free in her body. No more Fibro pain. No more pain in her neck. She never had Fibro all these years. The symptoms of Fibro and Hashimoto is almost identical. Our ENT handles thyroid problems as he sent me for an ultrasound 2 years ago. We found nodules in an ultrasound but they were very small. I had a recheck last month because of my sister. The nodules went from a 7mm to a .7cm, not much growth but I did grow another cyst. Blood work was still normal. My ENT is a surgeon for thyroid too. He decided towards removing the entire thyroid because of the hereditary factors. I have no problem with this at all and in fact would prefer him taking out the whole thing. I'll take a pill for the rest of my life. What are your thoughts?

97953_tn?1193367871
The indications for surgery include large nodules/goiter that cause compressive symptoms or a suspicious nodule -- you don't have either of these.  The chance of finding a small thyroid cancer is about 7% in the general population after removing the whole thyroid (like your sister had) - so this does not necessarily increase your personal risk.  Would consider consulting with a thyroid expert (endocrinologist) as in my experience, many patients do not feel better (in terms of overall symptoms) after surgery and I would not use non-specific symptoms or fibromyalgia to guide surgical decisions.
12 Comments
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5270973_tn?1365798488
I do understand where you are coming from, however, I have seen far too many of my Fibromyalgia comrads whose test results come up negative and it turns out they had some other problems anyway. I have been told and I have read that Thyroid cancer and Hashimoto's is highly genetically hereditary. There is cancer throughout my mother's side of the family. Almost every relative has had and or died of some kind of cancer. I have all of the symptoms of hypothyroidism. Weight gain with the inability to lose and believe me, I have tried. I have gained 20 pounds in the last year with no explaination for it.  I have terrible heart palpitations after eating anything at all within 15 minutes. This just started about 2 weeks ago. Called my doctor and they said it is thyroid related, even though tests say otherwise. I hurt all over. I am exhausted all the time. I have learned to not pin everything on Fibro as that can be dangerous. Can you explain to me why my sisters blood work in all her tests for the last 2 years showed up normal not indicating that she had Hashimoto's?  My town has 2 endo's, one of which is retiring and he only works in his office like 6 hrs a week if he is still working at all and he doesn' do surgery anymore. The other is so booked up that you can't get in to see him for many months. I trust my ENT. He saved my husband from Stage 3 throat cancer. I really don't have alot of choices in this podunk little town. I just want to try and understand why bloodwork would not show obvious thyroid disease, something they told her that she had for quite some time by the looks of her thyroid. I want to open doctors eyes to the fact that they can't always rely on blood work alone. My sister had the symptoms. What if she didn't have that huge nodule? The cancer was not in the nodules at all, only in her thyroid. I kind of disagree with you on the feel better part because if her body was not getting the correct amount of hormones, if any at all because her calcium was so low, and then you start getting the right meds to supplement, you should begin to feel better. She cleaned her entire living room last week, something she hasn't been able to do in years due to her exhaustion levels. She has a 35% bone density now with osteoporsis. My ENT, after seeing my sister's results, decided to take the safe route plus I do feel like something is in my throat when I swallow. Have you ever run into a situation like this? I am certainly not arguing with you but in the medical profession, doctors should never say never. I am also posting these posts because I want people to speak up. If you have all the symptoms, the bloodwork should not be the only deciding factor. I read a post on here of a woman who had heart palpitations for 5 years! Everyday! That is just horrible. And it was because her test results were normal. No one should have to suffer that long. If your thyroid is giving you that much trouble and it is growing stuff, my attitude is this. If it ain't workin right and there is stuff on it that ain't supposed to be there, then take it out of my body and give me a pill.
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Avatar_f_tn
Hashimoto thyroiditis can be detected through lab work, not just by examining the thyroid during or after surgery/removal.  Have you had antibody testing to see if you have Hashi?  If you do, then even though you may not present clinically at this point, as the thyroid function declines, the reason will already be known and pharmacological support can begin.

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5270973_tn?1365798488
Yes, I have had the antibody test and so did my sister. For 2 years, all 3 of us have had the complete panel done. She also had the biopsys and only the one right before her surgery showed an inconclusive/suspicious result but even those biopsys can bring a false positive. All of our tests were negative, everything tested normal. Your statement that it CAN be detected is what I am referring to in my sisters case. It wasn't and that scares the heck out of me. Her numbers were always in the normal range. Always. This is what her and I have come to realize after a ton of research and speaking to a lot of people. Thyroid nodules seem to be looked at by specialists that they are a condition by itself. We see that it is a symptom of a thyroid condition. In our research everyone who has these nodules ends up with some kind of thyroid problem, whether it be Hasi or cancer or anything. The nodules are forming because the thyroid is trying to tell you something is wrong but it doesn't always present itself in bloodwork. That is why I am suggesting that there might be a lot more people out there who have a thyroid problem with symptoms showing but no blood work abnormalities. Therefore the specialist has to rely on his/her gut instinct by looking at the whole picture. I have a whole list of symptoms and with my family history I trust my doctors decision. We were going to leave everything alone and watch the nodules but he said that if my sister's lab work after surgery showed cancer he was removing mine because it is hereditary and from his experience people who have Hashimoto or thyroid nodules also end up with cancer 20% of the time, not the 7% that Dr. Mark said. I shudder to think what could have happened had my sister not had the huge nodule. Mr. Ebert had the same cancer that went undetected for years and he had nodules.
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Avatar_f_tn
It seems you already know what you want to do, so I'm not sure what you're looking for here.  It sounds like you do not have autoimmune thyroiditis, but because you are related to someone who has had thyroid cancer, you wish to remove your thyroid.  That seems a bit rash for me, but understand that it is certainly an option and one you are choosing.  Good luck!
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5270973_tn?1365798488
Why do you say that it sounds like I do not have a thyroid problem? Are you a doctor. I don't mean to be disrespectful at all but my own doctors, both my GP and my ENT tell me I have the symptoms of a thyroid problem so they are not relying on the blood work totally. They are looking at the whole picture. I am not having the surgery because I WANT my thyroid out. I am going on good reliable reasoning by my ENT. I am getting horrible palpitations after eating anything and this is just one of many symptoms. Clumps of hair falling out with brittle dry hair, very dry and itching scalp and eyebrows, sweating, and thinning eyebrows. There is much more to the list. I posted this subject in here to not only see if the doctor here had run into any people like my sister. Has he treated anyone who had the symptoms but the blood work was normal. This is a big big concern of mine and I wanted to make everyone aware that there are people like my sister out there and I thank God she had a good Endo. Where I live, I don't have that luxuory. I have to use who is available and the ENT I am using is highly recommended so I trust his instincts as well. I want to make people aware of the fact that if you have thyroid nodules don't assume that it is a condition all by itself. Your thyroid is making nodules for a reason, something that may not be evident right away. I want to know the statistics of how many people who grow nodules end up having the thyroid removed or ablated later. I think you will find that that number is quite high. I believe and from the research I have done, the nodules are a warning sign and would much rather heed the warning now like my surgeon is doing and from his experiences then to wait it out to watch something grow that has no business being there. I am not looking for anyone to tell me what I am doing is right. You are right, it is my doctor and my option, however, I do want to make sure that others realize that by waiting it out to watch something grow that should not be there could possibly be a decision that could lead to more serious issues. Did you know that obesity, heart disease and diabetes can be caused by a diseased thyroid? Think about it. The thyroid regulates many many things in your body. How many people do you know that is overweight and the doctors keep yelling and putting them on diets and they don't lose weight and it becomes a vicious cycle. The doctor checks their thyroid via blood work. Nothing shows up. There are nodules but they are too small by the standards. He develops heart disease. He develops diabetes. If they would put these patients on a dose of synthroid or remove the thyroid these patients would not get sicker, they would get better. All I am saying is that doctors should not clump every person into a neat little pile and treat them all the same. There are people like me, my sister and my mom who have test results come back negative all of the time to only find out something is really wrong. I have learned from my own experiences. This one I am following my gut instinct.
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Avatar_f_tn
Perhaps you're misunderstanding my point of view and I yours.  For that I am sorry. My intent is  not to be combative.  You posted and asked for input, which you've gotten, but perhaps not the responses you'd wished for.  With each response, you fire back with your reasons that you want your thyroid out.

To answer your questions, yes, I know and have experienced symptoms of hypothyroidism, as I have Hashimoto.  I have typical symptoms such as dry skin, hair loss, weight gain with little weight loss.  I also have significant GI problems and also osteopenia.  

No, I am not a doctor.  One doesn't need to be to understand labs and reference ranges. I asked if you have antibodies present indicating Hashimoto and from what I can read, you do not.  It sounds like you want to be treated for symptoms of a disease you've not yet been diagnosed with.  It sounds like you want to be treated for how you present, not what you have.  To me, that is like pulling an aching tooth because one presents with tooth pain when really the problem is an untreated sinus infection.  That is just me though.

I understand that some people with red flags for possible thyroid problems want to be treated with thyroid protocols.  There are definitely doctors who practice this.  If you and your doctor believe it is in your best interest to remove your thyroid, of course you should do that.  I realize I may not understand all you've included in your posts; they are very long, no paragraphs and you talk about others' and your symptoms all at once.

Best to you.

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5270973_tn?1365798488
"I asked if you have antibodies present indicating Hashimoto and from what I can read, you do not.  It sounds like you want to be treated for symptoms of a disease you've not yet been diagnosed with."

Let's start with this statement from you and break it down. To respond to the above statement, you are correct, I do not show the antibodies in my blood work. My sister did not show it either and yet when they removed and tested her thyroid she had chronic Hashimoto's that she was dealing with the symptoms of for many many years but was not treated for it because as you stated, she did not prove to the medical profession that she had anything wrong with her thyroid other than the nodules and the symptoms. If it weren't for the huge nodule that protruded from her neck she would have never gone to the doctors because she is poor and only goes to the doctors when it is something necessary. They would never have found her cancer either. She would be dying sometime in the future from a silent cancer. All because her test results were normal.

I am not trying to be combatative, just want an explanation. My sister and I both have the same genetic makeup and have had the same symptoms together for many years. Both of us diagnosed with Fibro because they couldn't find anything else wrong and the pressure point test proved positive. Well a whole new door has been opened to us to help us feel better. She is continuing to feel fantastic and is losing weight for the first time in years. We experienced all of the symptoms you say you have plus more.

All I want to try and understand is why are doctors relying only on bloodwork when someone like my sister has proven that you cannot rely on them with something so serious. And we can't put my sister into a category by herself as being one of a few that this happens to because we don't yet know how many people are out there walking around with thyroid cancer and don't even know it or Hashimotos, being in pain every single day, but no one can help them because their results also show up negative. I have seen videos and read testimonys of people this very thing has happened to but for some reason docs are not putting 2 & 2 together. Maybe, just maybe, the medical profession believes that this is the only way to find Hashimotos just because it is the norm. Maybe, like Fibro, there is no test that accurately finds it. Maybe, just maybe, Fibromyalgia IS Hashimoto's in camoflage.

I am sorry my posts are long but I do have alot to say about this. I am passionate about there being a reason my sister suffered unnecessarily for over 15 years. I am going today for my surgery. I hope nothing is found BUT at the same time, if something is found my sister and I are going to make alot of noise to the medical proffession and maybe we are going to be able to bust open the care for Fibro people and help alot of people get some much needed relief and who knows, we might save alot of lives. Ya never know until you speak up and that is what I am about to do.

I find it difficult that others are so adamant on not being open minded and wanting others to be pain free. This is not about wanting my thyroid out just to have an operation or to compare myself to my sister just for the heck of it. This is about being proactive in my own care because all the research we have done has pointed to nodules being a precursor to a thyroid illness that maybe we don't have to wait for someone to suffer for a long time before something terrible happens. Maybe our thyroid makes these nodules to say "Hey, something bad is about to happen here, so open up your eyes!"
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Avatar_n_tn
Hi Sunnee
I too had hyperthyroid never detected till i was 35 and was treated 6 mos with thyroid meds and have nodules.  I have also been tested every two years about possible new nodules.  I just want to say i was also treated conservatively and was really upset as i was recently told my thyroid is not working and need to take the treatment.  I now realize why this was the case not to interfere initally with treatment and let my gland do the work it could at the time.  Its feedback system so if u take meds the thyroid will stop producing the hormone, and im much more at ease now with this info and treatment i have had because i have never felt as bad as i have on the treatment now of replacement hormone thyroxin .  I now realize that the doctors approach was actually holistic in allowing my body to continue to function on its own.  Im not sure about Hashimoto in sense of the material is not clear if it speeds up and slows down thyroid function, nobody really could answer that for me clearly. I was told however that it will eventually tire out and stop working.  My experience was that with support at times i had returned to my body weight (I used holistic approach) then other times would get the symptoms back. I have also been told that ppl who have had the gland removed actually have better results with thyroid treatment as opposed to those who still have an unhealthy gland (ie nodules etc) unfortunately there is no quick fix.  I wish u much good health and seems u have done an amazing job in educating yourself on this subject.  Thnx for sharing ur experiences.
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5270973_tn?1365798488
I did not have the entire thyroid removed. My doctor decided to leave my left lobe in but he removed the right lobe and the center piece as both had several nodules of decent size and cysts. The left one had a small nodule but it was so deeply imbedded into the lobe that he knew it would cause terrible bleeding and problems if he tried to remove it. Plus he decided to give me as much of a chance to have normal thyroid hormones in my body as long as possible. We are going to just keep an eye on this side. I was tested via a frozen section of both sides for cancer and none was detected. There was no evidence of Hashimoto's. Him and I both do not regret doing what we did. I am recovering after just having the surgery this past Wednesday. It was not a simple piece of cake surgery. I am still in some pain but am trying to wean off the Loritabs to just taking tylenol as the drugs are messing with my GI system. Roxy, thank you for showing support. I did not come on here to cause trouble, that was never my intent. I just wanted others to realize that they must be proactive with their own treatment and don't always trust tests to come up with the answers. If it can happen to my sister, it can happen to alot of others. You yourself show this as well. Waiting it out just because the doctor says so is not always the right option and can be an option that takes too long with dire consequences. I did what I had to do because of the hereditary factor. They didn't find anything but at the same time, if they did, we would have found it in a good time frame. Roxy, I am so glad that yours wasn't something too serious as cancer. What a long time you had to go through without treatment. My sister is doing very very well. I am so thankful that she went to the doctors when she did.
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Avatar_f_tn
You asked his thoughts, he gave them..

Your really did not need to reply that he was wrong...

You apparently already had your mind made up before asking him his thoughts.
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Avatar_m_tn
So many of the things I am seeing here indicate 'hormone disruption' - don't forget to look at all the poisons in our world -GMO's (when people clean up their diet toward Organic many conditions improve), food color and additives, MSG -aspartame, etc. are all endocrine disruptors. Seleinum, iodine, medicinal mushrooms, greens (chlorophyll, algae, wheat grass,kale,etc.) Zeolite...help detox :) Aloha.
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Thyroid & Endocrine Center of Florida
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