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Old 08-06-2012, 08:51 AM   #31
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Re: Puzzled by my thyroid results...

Gooooood morning, almost noon, everyone... at least where I am!

So I saw the ENT today, and, as has been the case for me at every doctor's visit recently, the results were surprising.

He reviewed my results and said that, at this point, he thinks my endocrinologist has misconstrued the data. He said that she has diagnosed me with toxic multinodular goiter, attributing my low TSH to the nodular activity. He said that he is more predisposed to believe that my actual problem is the very early stages of Graves' Disease, and that my nodules are most likely benign and not the cause of the problem, since my radiation uptake was very close to being within normal range.

He ordered a FNA of one nodule that is the largest, and said we would talk more when those results are back, but that it was probably it was okay. He mentioned the next step would probably be something called a suppression test, to observe what that nodule is actually doing, and then the other antibody tests to see if he can affirm Graves.

Just to get at a couple of things down the road - would love to hear your feedback...

1) He said that if the thyroid is more than 80g it has to be removed... has anyone else heard this? Does anyone know what the rationale is, if it isn't visible and not obstructing function?

2) He said that if he determines the nodules are not a problem, Graves Disease treatment would be first beta blockers, if I need them, then methimazole to try to bring me into a euthyroid state. He said he has patients who choose to be on methimazole long term, but that 37% of people who go into remission relapse within two years, so some people choose to just go ahead and move forward with RAI. He didn't seem to have a strong preference between RAI and surgery, though he did say that surgery seemed to get people to the common end result faster, rather than trying RAI and eventually killing the thyroid anyway. And I am still in child-bearing years, though that's kind of tabled while I deal with this anyway.

What do you guys think? Does this sound like wiser advice than I got before? I was pleased he was at LEAST doing a biopsy, which is more than I could get my endo to commit to.
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Old 08-06-2012, 07:33 PM   #32
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Re: Puzzled by my thyroid results...

Last question I forgot - from what I've read, it seems like because my T4s are so low normal that I should just go on beta blockers to start, and see how that goes...? He seemed pretty keen on putting me on methimazole, presuming the biopsy comes back clean and the antibody tests confirm Graves...
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Old 08-06-2012, 10:17 PM   #33
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Re: Puzzled by my thyroid results...

Hello All,
I am new to researching all things thyroid. All of my blood tests came out negative regarding my thyroid. My last physical was done approx. three weeks ago. Upon that very same physical my doctor notated the right side of my neck was swollen and it seemed to extend to the middle of my neck. Needless to say, an ultrasound was ordered. They have found two possible three nodules in my thyroid. I have to go back for an additional ultrasound and a biopsy on one of the nodules that is over a cm. I have been experiencing a myriad of symptoms in the last 4 months and I'm unsure as to what to do next?!?
I have experienced significant weight gain, muscle pain, joint pain, swollen ankles, lines in my finger nails, hair loss, memory loss/lost of concentration, fatigue, pain on my neck with pressure, overly sensative, inflammation and headaches. My doctor has blood tested me once for autoimmune diseases and for my tyroid, I also had a sleep study done-which came back negative. Now my doctor is referring me to a rheumatologist and I'm at a stand still on trying to figure out what is going on with me? I'm frustrated and tired of constantly hurting. Does anyone have any recommendations or suggestions that helped to get over the initial slump?

 
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Old 08-07-2012, 03:17 AM   #34
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Re: Puzzled by my thyroid results...

Hi, CC...

Welcome! I wish I knew what to say, but I am not sure why your doc would send you to a rheumatologist when it's clear that you have thyroid nodules and you're presenting a lot of symptoms that are tied to thyroid disorder.

That said, you should probably start your own thread with your topic, as specific as you can get in the title, rather than posting your questions in mine. It's more likely to get noticed and stay on topic that way; I think you'll get better results.
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Old 08-07-2012, 06:05 AM   #35
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Re: Puzzled by my thyroid results...

While I'm glad the ENT seems to have properly evaluated the condition of your thyroid, it seems that he should leave thyroid function issues in the hands of a more educated doctor. (sorry).


Quote:
Originally Posted by Princesca View Post

1) He said that if the thyroid is more than 80g it has to be removed... has anyone else heard this? Does anyone know what the rationale is, if it isn't visible and not obstructing function?
I don't know what thyroid weight would have to do with anything if it's not causing a problem but, I must admit I haven't researched along those lines - this is just MHO.

I do know that the denser the thyroid is, the harder it is for RAI to be effective.

I will tell you this much - my first two endos were pushing RAI and my third pushed surgery.....my thyroid was normal size and had no nodules at that point. None of theses endos knew how to medicate properly.

Quote:
Originally Posted by Princesca View Post
2) He said that if he determines the nodules are not a problem, Graves Disease treatment would be first beta blockers, if I need them, then methimazole to try to bring me into a euthyroid state. He said he has patients who choose to be on methimazole long term, but that 37% of people who go into remission relapse within two years, so some people choose to just go ahead and move forward with RAI. He didn't seem to have a strong preference between RAI and surgery, though he did say that surgery seemed to get people to the common end result faster, rather than trying RAI and eventually killing the thyroid anyway. And I am still in child-bearing years, though that's kind of tabled while I deal with this anyway.
Please know that the only way to confirm/rule out Graves' is with a TSI (thyroid stimulating immunoglobulin) test. And, while some labs might indicate a level >140 (or some value) as positive, there are nuances associated with any result so, it would be best to post the results here.

Beta-blockers address the symptoms that can accompany hyperthyroidism...they also have the peripheral effect of lowering the FreeT3 level. Obviously, beta-blockers might make sense in your case.

Methimazole dosing is always based upon the FreeT4 level with the patient taking the lowest possible dose to maintain the FreeT4 level near the high end of the range. Right now, based upon your labs, you don't need it.

In fact, if you took methimazole now, you would be driven further hypo - that makes no sense at all.

His statistics about remission are total garbage. 88% of patients achieve remission and it can be long-lasting if the patient makes the appropriate dietary and lifestyle changes.

The people who relapse were often taken off anti-thyroid drugs too soon. Unfortunately, many doctors set some arbitrary timeframe for people on ATD's vs. keeping them on ATD's until the body (labs) indicate that remission is imminent.

Please also know that, if a patient relapses, usually another, shorter round of ATD's is all that's necessary to achieve remission once more.

The longest-lasting remissions occur in people who take ATD's for 4 years.

According to "Thyroid for Dummies", ATD's can be taken for life, if necessary.

The US is behind the rest of the world to the extent that doctors here seem all-too-quick to radiate the thyroid.

First off, if you do indeed have Graves', please know that the thyroid is the victim in this case so, why destroy it with RAI or surgery?

Please know that a very large study showed an increase in cardiac and cancer mortality in post-RAI patients. And, the RAI has been shown to pool in ovaries and could very well affect your fertility.

The common end result of either RAI or surgery is permanent hypothyroidism.

I don't understand why doctors push permanent treatments for what can be a temporary condition.

This doctor obviously doesn't know how to medicate for your particular situation right now. He can't be counted on to medicate properly after RAI or surgery.

When a doctor can't medicate properly for hypothyroidism, this means the patient isn't prescribed enough of the vital thyroid hormone needed by every cell of the body for proper function. That is the theme of almost every thread on here.

In the 5+ years I've been participating on multiple thyroid forums, I always advise to anyone considering a permanent treatment that they make sure, without a doubt, that their doctor knows how to medicate properly beforehand.

Most people found themselves in remission before finding a thyroid-savvy doctor (I am one of them).

If your doctor was to consider any type of meds for you, BRT (Block and Replace Therapy) could work.

Basically, the patient takes a small dose of anti-thyroid drug (5mg methimazole being a common dose/med). The ATD suppresses the production of T4 and T3 so will effectively lower both the FreeT4 and FreeT3 levels.

In addition to the ATD, the patient would take whatever dose necessary of T4 thyroid hormone replacement (common one is Synthroid) to prevent hypothyroidism (keep the FreeT4 level near the high end of the range).

I hope you can find a better doctor to address your thyroid function issues.
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Old 08-07-2012, 06:39 AM   #36
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Re: Puzzled by my thyroid results...

Thanks as always, Sammy... He seems like the kind of person who would listen to my ideas, so we'll see how the biopsy comes back, since I'm assuming, if there's evidence of cancer, then further research into the underlying cause is kind of pointless because my thyroid will most likely have to come out. If it comes back okay, I'll definitely reiterate the suggestion of BRT and see what he says. When I mentioned it in the consult, he and the resident who was with him both nodded, so it seems they've heard of the concept - whether that makes them prone to trying it is another story. It makes total logical sense to me to try beta blockers and see if those change my FT3/FT4 levels. I have read that they can only change the FT3s to a relatively small degree, but mine aren't that far out of whack. Just to make sure I'm clear, are beta blockers capable of bringing a slightly high FT3 into range and allowing FT4s to rise on their own? I am pretty asymptomatic at this point, so I don't think I need beta blockers to reduce the effects of hyperT - I'm not suffering any.

Jeez, I wish there was a BRT website where you could find doctors willing to try that sort of thing.

I'm feeling kind of down about all this... I've struggled with PCOS all my life, and now that I am finally eating very well, and taking better care of myself, this happens. Most days, I keep a stiff upper lip, but I'm horrified by the possibility of ending up with no thyroid, and what seems like a nightmare process of trying to get meds right after that. I read all these stories of people who've suffered all these terrible side effects, people who even say that their underlying emotional state and personality have changed, and I like who I am... I don't want to lose that. I know that Internet forums are to some degree self-selecting, as well... same as with hotel reviews, in a way, that people who are happy and their meds are well adjusted are probably not posting as often on the Internet in forums, unless they're trying to help others. So I'm trying to take all of this with a grain of salt.

Most days are okay, some days... not so much. Today is one of the latter.

But thank you, Sammy, for being, as always, my beacon in the dark night, and for your patience with all my questions. You're an angel. Have you ever considered becoming a professional patient care advocate for thyroid disorders? I'm not sure if such a thing exists, but it's apparent from reading this forum that they should, if they don't.

When I get biopsy results, I'll come back and do an update. I <3 you.
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Old 08-07-2012, 06:52 AM   #37
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Re: Puzzled by my thyroid results...

I understand where you're at.

Beta-blockers will do nothing for the FreeT4 level.

Please know that the FreeT3 level represents T4 that has been converted to T3. So, the T3 needs to get used if the FreeT3 level stands any chance of decreasing.

Right now, your body is "overconverting" the little T4 it has into T3. The beta blocker interferes with conversion so, if taken over time, can help lower the FreeT3 level.

It makes no sense for you to take anything if you're not having symptoms.

Endo #3 was supposedly "familiar" with BRT. However, she told me the "only problem with it is that people often wind up with suppressed TSH". She lasted all of my first appointment and labs.

I agree wholeheartedly that it's people who are struggling who are found on forums. Once people achieve wellness, it's not uncommon for them to leave forums.

One disheartening realization I had occurred when I looked at all the other forums on this site. Thyroid disorders "wins" with the largest number of posts.

Thanks for your kind words. As you know, I'm here to pay forward all the great help I received from my first-ever thyroid forum.

There are many professional thyroid advocates at work right now. In fact, I am aware of petitions that have been sent to a large number of endo/thyroid organizations. Unfortunately, it seems like we're up against brick walls.

I recently became aware of the "updated" information about hypothyroidism that was shared in the AAFP (American Academy of Family Physician) monthly newsletter - it set things back for thyroid patients.

The killer is that one of the newsletters published in 2001 finally said the right things: treatment should be based upon the FreeT4/T3 levels and many people benefit from T4/T3 combo therapy - all of that was redacted in the latest newsletter (sigh).

I don't want to deal with that level of frustration - I need to preserve my health. I'll keep on trying to effect change one person at a time. I'm happy to be here for you.
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Old 08-07-2012, 07:13 AM   #38
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Re: Puzzled by my thyroid results...

Wow... so... just want to make sure I'm understanding. And I know you're not a doctor, so I will not rely solely on your opinion, but you are much further down this road than I am, so you're really giving me great ideas about what to look for and ask and dig into further. It sounds like:

If my thyroid nodules are benign and not causing a size/compression problem, then what might make the most sense is a low dose of methimazole and a dose of Synth to bring up my T4s, taken in conjunction. Beta blockers are primarily for symptoms and in my case, because I am asymptomatic, would make little sense.

Am I right in thinking that if my biopsy comes back cancerous, then the only real recommended treatment is removal, correct? I haven't read anything in the research I've done to suggest any alternate treatments.

If it comes back normal, is the suppression test really necessary to observe the nodule activity, or should I ask for the antibody labs first?

I know it's bound to be disheartening, not just for those people beginning treatment, but for people who've been through it, and see the same mistakes happening over and over. You must feel Sisyphean sometimes... yeah, that Greek (?) guy that was forced to keep rolling that giant boulder up the hill.
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Old 08-07-2012, 07:30 AM   #39
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Re: Puzzled by my thyroid results...

I agree with all of your thoughts. And, yes, if the biopsy comes back cancerous (this happens in 3% of all cases), surgery is recommended. Just so you know, we have a thyroid cancer survivor on this board who is very helpful.

I'm not familiar with the suppression test at all. I've developed nodules since my diagnosis and, with the exception of one that was biopsied, all that my ENT and thyroid doctor have done is have me get regular ultrasounds to monitor.

No matter what, the TSI test is most appropriate. In fact, if you want really comprehensive antibody testing, a TBII (thyrotropin binding inhibiting immunoglobulin) test would be good. (TBII is another Graves' antibody only it blocks the production of thyroid hormone vs. TSI that stimulates the production of hormone).

While I do feel badly for people suffering as I did due to inept care, it's very rewarding to help people achieve wellness - that alone keeps me going. And, I use the ignore feature for people who refuse to drink the water I try to lead them to and criticize me for that.
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Old 08-07-2012, 08:07 AM   #40
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Re: Puzzled by my thyroid results...

Oh Sammy - one more question.

This is kinda whacked, maybe... but is there any truth, do you think, to the notion that people with Graves should not drink tap water? I have researched the fluoride issue, but I can't tell if it's legitimate science or not. I ask because I drink lots of tap water, exclusively, save for a daily espresso. I drink probably the equivalent of 5 sports bottles of water a day.
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Old 08-07-2012, 12:06 PM   #41
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Re: Puzzled by my thyroid results...

Flouride (or any of the "ides") is bad for anyone in regards to autoimmune disease.

In order for a person to develop an autoimmune disease. he/she needs to have a genetic predisposition and exposure to one or more triggers.

I can't remember if I shared the most common thyroid disease triggers with you.....if I didn't and you'd like to know them, please just let me know.
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Old 08-07-2012, 12:09 PM   #42
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Re: Puzzled by my thyroid results...

I think I read them somewhere - allergies was one, I believe, and this was the absolute worst allergy year ever for me. It may be that that, combined with all the tap water I drink, did me in.

Is there an okay water substitute that you can buy in the store that doesn't have the ides?

Hehe... beware the ides of March... and April, and May, and June... and...
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Old 08-07-2012, 12:42 PM   #43
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Re: Puzzled by my thyroid results...

Hmmm....my edited post that included this:

I'm going to be away next week so please ask any questions that come to mind before then.

was somehow repeated.

I deleted the duplicate info and will tell you that I think most spring waters wouldn't be flouridated.
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Old 08-07-2012, 02:52 PM   #44
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Re: Puzzled by my thyroid results...

Thanks for letting me know... I think I am out of questions for the moment (shocker) as further movement depends on the results of my biopsy, which I won't have until Friday next unless I decide to try and call in to get them earlier. I might just do that. On the other hand, my follow-up appointment isn't until that Friday, and I know I'll just obsess until then if I do. We'll see
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Old 08-08-2012, 08:49 PM   #45
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Re: Puzzled by my thyroid results...

Quote:
Originally Posted by Princesca View Post
Hi, CC...

Welcome! I wish I knew what to say, but I am not sure why your doc would send you to a rheumatologist when it's clear that you have thyroid nodules and you're presenting a lot of symptoms that are tied to thyroid disorder.

That said, you should probably start your own thread with your topic, as specific as you can get in the title, rather than posting your questions in mine. It's more likely to get noticed and stay on topic that way; I think you'll get better results.
Thank you Princesca, I'm new to the boards and just wondered if people who have been through what I am currently going through could give some insight. I apologize for posting on your thread and will take your advice. Thank you again.

 
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