# Why TSH is not the best test..link to article



## usmc4myson (Sep 26, 2010)

I just read an article that I think most people would benefit from reading. I learned a lot about my own disease state, and I hope that someone else benefits as much as I did.

Here is the link:
http://nahypothyroidism.org/diagnosistreatment/

Now...I just need to find a doctor who understands, and is willing to expend a little brain power to figure me out! I have had it up to my puffy eyes with doctors who continue to write me out a long slow death sentence to a drug that clearly is failing my body, and who never once suggested that I try a different type of medicine. 
They say that teachers are forced to "teach to the test."
Well, in my 12 year journey down this road, all of the doctors I have seen "treat to the TSH." and rarely look at any other lab values. This is an outrage. Yes, some people are very happy on Synthroid. Others, such as myself, are made to feel ignorant, and frantic, as we try, year after year to figure out what the heck is wrong with us. Shame on those doctors for ripping away YEARS of someone's life by insisting that "it is not your thyroid." I have never felt so utterly betrayed in my life. 12 years I have been struggling, sick, UNHEALTHY, and asking my doctor the same questions. Like a good little girl, I did not really question his authority. I made many attempts to describe my symptoms...but when you feel so bad for so long, everything sort of melds together, and you just carry on and try to be strong. I am so *angry* with myself for not waking up sooner. I KNEW, but didn't know how to ask. 
I hope to find a doctor who will put two and two and two together, and truly help me heal. 
If you are just starting out on this journey, I hope and pray that you find a doctor right away who doesn't hide behind dogma to the detriment of your health and wellbeing.

~Amy


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## Andros (Aug 26, 2009)

usmc4myson said:


> I just read an article that I think most people would benefit from reading. I learned a lot about my own disease state, and I hope that someone else benefits as much as I did.
> 
> Here is the link:
> http://nahypothyroidism.org/diagnosistreatment/
> ...


Amy...............we will all appreciate that link!! I have bookmarked it. Thank you so much!

It is a shame when one is so ill that they have to learn to advocate for themselves but most of us here have had to do the same.

We will help all we can.

How are you feeling today; a bit better I hope?


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## lainey (Aug 26, 2010)

In another page on this site, it proceeds to slam the "evidence based" recommendations of the American Association of Clinical Endocrinologists, the Endocrine Society and the American Thyroid Association:

http://nahypothyroidism.org/why-doesn't-my-doctor-know-all-of-this/

and then makes statements such as:

"Evidence-based medicine involves the synthesis of all available data when comparing therapeutic options for patients. Evidence-based medicine does not mean that data should be ignored until a randomized control trial of a particular size and duration is completed."

I object to this. Evidence based medicine is based on randomized clinical trials with controls. Just because they post a dozen references from journal studies afterwards they have made a case?

Science, and to a large extent medicine, is based primarily in measurable change--of course we need numbers--how do you quantify "feelings"? People want much of the thyroid diagnosis and treatment to be based on how they "feel"--that's a laudable goal, but how do you measure that? How do you adjust for the differences between people?

Healing with medicine is only one component. The rest comes from within the patient.

The groups they criticize are those who produce the rubrics for diagnosis that the website itself recommends--yet they are inadequate and their methods are not based on good empirical data?

Anyone can twist the data any way that they want--the important part is the perspective. If your goal is to have all kinds of people taking thyroid medication because everyone with a TSH over 2 must need it, you can twist the data to support your position. Do the reverse and in the same way then say that it's not their thyroid causing the problem because their TSH isn't high enough.

Now, a diagnosis is not difficult when the numbers are clear, see, and often times they are, negating the need for many of those tests on the first go-round. You don't need to run antibodies if there is something clearly amiss from the start. However, some people need the additional tests to make a sub clinical diagnosis, and even then there will still be some people who fall outside of the parameters, simply because that is the nature of a distribution, and is not a case for advocating that most doctors are ignorant or not up to date in their specialty--once again, you have a distribution there also, and there are plenty that diagnose and treat properly.

Now, I think in the end, each patient has to be their own advocate to make sure that they get the complete testing for a diagnosis--and they should be aware of what is needed to make a complete diagnosis--just in case they fall outside of the box and the physician doesn't get enough "evidence" the first time.

But then, keep in mind, on these message boards, the population is skewed. There aren't mobs of people who have been diagnosed and well treated and not suffering posting here and in other places--we don't hear from the majority. Instead it is the minority of patients who struggle for a diagnosis or struggle to be properly treated.

Yes, they do need a variety of information, but they need to remember the old adage: "believe nothing of what you hear and only half of what you see" and there are plenty of people who make it their business to treat the "seekers", the dissatisfied, with their own brand of misinformation.

I wish you luck in your healing, and in finding a doctor to help you, it is not always easy.


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## usmc4myson (Sep 26, 2010)

Lainey~
I just want the option offered to me of adding a T-3 or switching to Armour if I am not *well* on the Synthroid alone. If so many people are helped GREATLY by trying a different medication, why isn't it even spoken about or offered?? Why must I suffer needlessly, and scream silently?? What is the HARM in trying a medication that is effective for many people, FDA approved, and trusted by many patients???

The HPA Axis is SO individualized, and SO extremely complex, that it is incumbent upon doctors to be open to different thyroid drugs. It's not a one size fits all deal. What works for Suzie might not work for Jill, and they may have the exact same lab values!! Maybe Jill needs a tiny dose of Cytomel to help her endocrine system function properly.

That is my entire point. Nothing more, nothing less. 
I don't want sympathy. I just want to understand, and be understood. Maybe I am more emotional about it than you are...but that doesn't mean that either of us is wrong.

The field of medicine is always discovering, always learning new ways to do things. Thank God for that! It is about time for a new model of thyroid treatment to emerge. A model that works for both the number crunchers, and the autoimmune, complex, emotional, and sometimes desperate women like me. There is room for all of us on the ark...


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## lainey (Aug 26, 2010)

Armour thyroid is not FDA approved--there are some older medications which are also not approved, keep in mind, so that does not mean it cannot be sold, only that it's formulation and potency are not controlled by the government. It has reserved a place similar to phenobarbitol--an older treatment, still in use because it still works for some.

Actually, the new model was the synthetic and bioidentical levothyroxine, along with high sensitivity TSH, Free T and antibodies testing--these are all within the last 30-40 years--prior to that we didn't have either available for diagnosis, or an accurate way to dose people or even measure their thyroid function.

In that sense, a lot more people are being treated and diagnosed than ever were--god bless the TSH test.

The something new shouldn't be about diagnosing the problem. It should be about stopping the autoimmune process in the first place.

True, not everything works for everyone, and I am not implying that it does. This is true of any disease. But, evidence based medicine does lead to standards of treatment--and good clinical practice backs thyroid treatment--consider yourself lucky that you live in a country where "options" are available--in many parts of the world T3 medications are not available to supplement T4, let alone compounded medications. If that is the case then, is the world just generally off base regarding thyroid treatment? Or is evidence driven medicine based on what works 90% of the time, when weighing cost v. benefit?

What I am saying is that the people for whom traditional therapy does not work for, as well as the people who have such difficulty being diagnosed fall well outside of the norm--and they should be aware of that. Forums and the internet provide a basis for asking questions of the medical establishment, so that if the typical treatment is not working, they can try something else.

All of these tools are useless unless they are in the hands of a good clinician. There are plenty of bad doctors, bad lawyers, bad government--people who are unwilling or unable to think and act creatively based on available evidence. But, there are plenty of others that do--the challenge is to find them and hire them for yourself, especially if you don't fit inside of the box.

People need to have rational expectations for what treatment can achieve. It's medicine, not a miracle, not a cure. It won't solve all of your problems, and people shouldn't expect that.


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## usmc4myson (Sep 26, 2010)

Lainey~
You made some very valid points, and I understand what you are saying. A good clinician shouldn't be so difficult to find. I have had a diagnosis for 12 years. That wasn't even the issue. I look back over the last 12 years, and I see a stack of medical records, with myriads of testing, specialists, and a woman who was trying her darndest to feel awake and to function, let alone lose weight!
All that time, nobody ever put two and two together, and suggest that maybe, just maybe, the levothyroxine wasn't the right medication. That's my point. Doctors were ok with me feeling like death warmed over, as long as my TSH was "in range." It's the same story we hear over and over. Symptoms don't matter, as long as the TSH is ok. The KICKER is this...the Hippocratic Oath speaks of doing no harm. It is just as harmful to *withhold* a potentially _helpful_ drug, as it is to offer one that actually does harm. Some clinicians were instrumental in helping someone FEEL good again, and others were (and still are) withholding the chance to try that same drug. THAT is a breach of the oath that they take. It is so reprehensible to me. I don't even understand how these doctors can sleep at night...knowing that so many of their patients are suffering. Maybe they don't want to be bothered adjusting meds. Maybe they need the money that all of my "sick" visits provided. Maybe they didn't lay their hands on us in harm, but by offering us nothing but synthroid, they may as well have. 
Obviously, the model for thyroid treatment care should include a clause that makes it imperative for the doctor to check certain labs, test the adrenals, and offer alternative medications to patients who do not respond well to whatever medication they are placed on. What is the harm in that? Everyone is different. Some people can't take natural dessicated thyroid. Some can't take levothyroxine. It's not rocket science! No, Doctors are not God. They are people that we are supposed to be able to TRUST. Yes, they make mistakes. But is it simply a MISTAKE to fail to offer a chance to try a different drug, or a reprehensible "sin of omission?" Isn't failing to tell the truth the same thing as telling a lie??!


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## lainey (Aug 26, 2010)

My experience is that doctors don't communicate much.

Quite frankly, I think they train that out of them, because a good percentage are not good natural communicators.

My experience with people is that they are often too general in their descriptions, and don't communicate their needs well with doctors in a way that will get their attention.

In a lot of ways, the internet is a blessing and a curse. People have access to a lot more information, are able to research and ask questions that they never would have considered.

But, I think it lets doctors do even less, because they assume that with the information available, that the patients already know all they need to, and if they wanted something they would be asking.

I have met a few responsible professionals who have actually directed my research into the procedures and treatments that they provide, to help me make an informed decision. Others are using e-mail and the internet to communicate with their patients outside of the office for simple questions. But this isn't the status quo for sure.

Then, you have to consider where the usefulness of dessicated thryoid falls into evidence based practice and the clinicians experience. It is a little more complex to dose and prescribe, and the labs it produces are not always "normal" to the ranges. Like any independent contractor, doctors can pick and choose what they would like to deal in, and if there is a reliable alternative, they can choose not to prescribe these medications--whatever their personal reasons may be. Yes, it is a disservice to you to not present all the alternatives--but they are not really in the business of sending patients away, right, if they can convince you to stick around long enough to try what they're selling?

It is always about finding a doctor who is a good fit for you--as humans they are as inherently inconsistent as we are, so unfortunately for some of us the good "match" takes a little longer than for others.


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## usmc4myson (Sep 26, 2010)

Absolutely. Communication is KEY. On both sides of the table. Patients like me tend to allow our emotions to wash over us, and doctors are trained to remain aloof and professional! That is a recipe for disaster, right there. 
You are right about the internet being a blessing and a curse! If you try and tell your doctor that you looked something up on the internet, they gasp in horror! Oy vey...


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## Andros (Aug 26, 2009)

usmc4myson said:


> Lainey~
> You made some very valid points, and I understand what you are saying. A good clinician shouldn't be so difficult to find. I have had a diagnosis for 12 years. That wasn't even the issue. I look back over the last 12 years, and I see a stack of medical records, with myriads of testing, specialists, and a woman who was trying her darndest to feel awake and to function, let alone lose weight!
> All that time, nobody ever put two and two together, and suggest that maybe, just maybe, the levothyroxine wasn't the right medication. That's my point. Doctors were ok with me feeling like death warmed over, as long as my TSH was "in range." It's the same story we hear over and over. Symptoms don't matter, as long as the TSH is ok. The KICKER is this...the Hippocratic Oath speaks of doing no harm. It is just as harmful to *withhold* a potentially _helpful_ drug, as it is to offer one that actually does harm. Some clinicians were instrumental in helping someone FEEL good again, and others were (and still are) withholding the chance to try that same drug. THAT is a breach of the oath that they take. It is so reprehensible to me. I don't even understand how these doctors can sleep at night...knowing that so many of their patients are suffering. Maybe they don't want to be bothered adjusting meds. Maybe they need the money that all of my "sick" visits provided. Maybe they didn't lay their hands on us in harm, but by offering us nothing but synthroid, they may as well have.
> Obviously, the model for thyroid treatment care should include a clause that makes it imperative for the doctor to check certain labs, test the adrenals, and offer alternative medications to patients who do not respond well to whatever medication they are placed on. What is the harm in that? Everyone is different. Some people can't take natural dessicated thyroid. Some can't take levothyroxine. It's not rocket science! No, Doctors are not God. They are people that we are supposed to be able to TRUST. Yes, they make mistakes. But is it simply a MISTAKE to fail to offer a chance to try a different drug, or a reprehensible "sin of omission?" Isn't failing to tell the truth the same thing as telling a lie??!


I definitely agree!! I was the walking dead on Synthroid and Levoxyl. The doctor I found to agree to "try" me on Armour saved my life. I was not converting T3 at all.

It is said that if after 3 visits to a doctor, you are not seeing any improvement, something is seriously wrong and one should at that point seek out another doctor.

It's all about the money! Big Pharma!


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## HeidiBR (Apr 4, 2010)

I've never really went in for the whole "Big Pharma" theory. I think it is more the physican's comfort zone issue that Lainey describes rather than physician's being in big pharma's thyroid pocket. After all, Armour is technically big pharma, too.

For many people, synthetic T4 works very well. Most people I know who are being treated for hypo are on it, and happy with it. I know some folks who swear by dessicated, and others who had a bad experience with it. Some people love Cytomel, and others can't take it, or it does nothing.

I think we are all individuals, and our treatment has to be individual. What works for me, may not work for others.

I also think it is OUR responsibility as patients to be assertive and knowledgeable about our care. 12 years of feeling like crap? I think you need to interview endos; don't waste your time with an office visit. Just call and ask questions, like, does he dose only on TSH? Is he adverse to prescribing Cytomel, or dessicated? I made a bunch of phone calls, and that's how I found my endo. I would not waste my time with an endo who only will dose on TSH. My TSH is totally flatlined, and my endo doesn't care. Another endo would probably flip out and reduce my dose.

Maybe it is time to find a doctor who will prescribe what you want, instead of trying to convince your current doctor to give you a new drug?


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## lavender (Jul 13, 2010)

I do see there being a problem with the AACE holding synthroid up as the Gold standard treatment, when it does not work for many of us. I had to fight my endo to test my Free T3 after my thyroid, and even when the tests showed that it was non-existent, and I was a zombie, he would not acknowledge that something was wrong, or that there was another treatment option. 3 months after having my thyroid removed, he declared me eurothyroid, even though I was not able to function at all, and my T3 was non-existent, and sent back to my PCP for anti-depressants.

I fired him, took all my labs elsewhere, was put on Armour, and my symptoms improved dramatically in a very short time. But the AACE does not see this as a valid treatment????? I wonder if any research studies have been done on those of us who feel like we're pinned under an elephant when we're supposedly erothyroid on synthroid????? Probably not.

I am glad I found a doctor who is willing to help me find a treatment that works, but I am also concerned because I know I am not alone in suffering on only T4 therapy. I would like to see more done to educate docs on the option of dessicated thyroid treatment.


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## HeidiBR (Apr 4, 2010)

I agree with you that physician's need to be taught about dessicated and T3 treatment in addition to synthetic T4. I think this is an area where there has not been a lot of research because there is not a lot of money potential in it for researchers; after all, thyroid treatment is inexpensive, and thyroid issues mostly affect women.

My endo is very open to exploring different types of treatment. He has done all of the appropriate tests without me asking or prodding. He is open to everything except Armour: he feels that with Hashimoto's that the dessicated thyroid tends to aggravate autoimmune issues and that the body tries to reject it more than synthetic T3 treatment. I don't know if that is true for me or not, as I have not been on Armour. My endo keeps my TSH suppressed completely to control the auto immune issues. The endo also believes that dessicated medicinal levels fluctuates too much for a narrow margin of keeping that TSH suppressed.

I don't think the issue here is "Synthroid versus Armour." Both work for different types of people. The issue is that some people need more pure T3 than others for whatever reason.
I know the Armour and its like works miracles for some people. For which I am very glad! Everyone is so different in how he/she responds to thyroid treatment and what our bodies need.

For me, knowing that the AACE doesn't recommend it, my endo doesn't recommend it for me, and that it is not FDA approved is enough to keep me on Cytomel and Synthroid.

There is really no way for how many people Synthroid is not working; forums such as this usually attract folks seeking answers, as their treatment isn't working. In other words, there may be a majority out there who are fine with their Synthroid treatment; they just are not on forums because they don't have a need.

I am one of those people who need some T3. It took me a year to get it - I didn't want it until I was sure that I couldn't get all that I needed from Synthroid. I didn't want to take two pills were day. Finally, I realized that I needed some Cytomel and my doctor agreed. And it has made a tremendous difference, almost immediately.

I think what I was trying to impart to the original poster Amy is that sometimes it is futile to try to educate your physician. She may need to find another one. Also, don't get so hung up on only being treated with dessicated; try some Cytomel and see if that works if she can't find a doctor to give her dessicated.


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## lavender (Jul 13, 2010)

I have also read in various places places that Armour can increase antibody action in those who still have a thyroid. It does seem that exploring synthetic T3 and T4 replacement is a good option for some, while others swear by dessicated thyroid. It is my understanding that antibodies are less of a concern for those of us who still have thyroids. In any case, an awareness of various options for thyroid replacement and finding which one fits each individual patient seems to be essential in helping those of us with thyroid disease have the best quality of life possible. Which is not what I found with docs who follow the AACE's recommendation of supplementing with synthetic T4 only.

I looked up some information on Armour and FDA approval since this is the first time I have heard that it was not FDA approved. (sometimes I get a bit obsessive about these things)

"Is It FDA-Approved?
Contrary to what is implied by many Web sites, Armour Thyroid (as well as all other thyroid USP products) has never been approved by the U.S. Food and Drug Administration (FDA). However, this is not necessarily as bad as it sounds. Many prescription medications have never received FDA approval. Almost always, these are old medications that were in use long before the FDA existed or before certain laws and regulations were in place. For instance, phenobarbital (Luminal®), a prescription seizure medication, has never received FDA approval."
http://endocrine-system.emedtv.com/armour-thyroid/armour-thyroid-p2.html

I have looked up various sites and keep finding the same answer. The FDA has not disapproved of Armour, but Armour is a very old drug that existed before the FDA approval process and has never been required to go through the approval process. I think this is a big difference, and I would hate to see people shy away from Armour thinking that the FDA has some problem or concerns with it.

Interestingly, the FDA did have some concerns about Synthroid, and required that it go through the approval process about 10 years ago. The FDA could do the same thing with Armour if they were concerned about it. 
http://thyroid.about.com/cs/synthroid1/a/approvedfda.htm
http://www.nytimes.com/2001/07/24/s...of-sales-thyroid-drug-needs-fda-approval.html

In my opinion, newer is not necessarily better, even when it comes to medication. I have also found that Armour is way cheaper than brand name Synthroid, which is the brand names synthetic T4 endorsed by the AACE. So yes, money is a factor here.


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## HeidiBR (Apr 4, 2010)

For me, it is the possible antibody increase that keeps me away, really, as I still do have a thyroid. As I said, I know people who did really well on Armour - and others who didn't. Kind of like Synthroid.

One is not better than the other. Just different.

As for the FDA approval, I bet they will require it at some point of dessicated. If they want to, they'll find a way, grandfathered or not.


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## usmc4myson (Sep 26, 2010)

Heidi,
I have autoimmune too, and from what I have read, it is very possible to feel well on dessicated. It just may take more time. I do not know of many people with autoimmune thyroid disease who really do well with synthroid. It helps at first. Then it seems to be downhill from there if you are under the care of a doc who won't even consider anything else. Many of us have fatigued adrenal systems. That's a huge component of autoimmune. Also, inflammation in the body prevents proper absorption and conversion of T-4 medications like Synthroid. There is a website called Stop the Thyroid Madness, and I found a lot of helpful info about what not to do when you first go on a dessicated product like Armour. There are a lot of issues with autoimmune conditions. Hashimoto's impacts a lot more than just our thyroid gland. Maybe modern medicine will finally wake up and acknowledge it. I hope so. I also found a website made by a Dr. Jonathan Lowe. I learned a lot from his website. In fact, I need to take a step back and marinate for a few days to really let it sink in. It's giving me hope for the very first time in 12 years!


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## lainey (Aug 26, 2010)

Let me just say, regard with suspicion ANY website that promotes a particular treatment, or sells items such as books, supplements or false hope.

Stop The Thyroid Madness, like any other "position" twists the research journals and articles it choses to use to back up it's claims--"big pharma" or not, if you are going to make statements, credible research does not consist of patient testimonials, and you shouldn't be selling your books and merchandise there.

There was talk of sending Armour through the FDA approval process most recently, because during the "reformulation", they technically were supposed to initiate it, as "technically" it became a new drug. The websites were buzzing with "fear" over that. Why?

A vast majority of patients, world-wide, are treated successfully on T4 only medications. What you see on the internet does not represent the majority. If they are feeling well, they don't need to be here, nor are they looking any where else for alternatives for that matter. Occasionally you find an odd-ball like myself, who feels the need to represent the majority and sticks around to post on their behalf.

This is not a "new" discussion in the sense that there are other conditions where similar situations with available drugs has arisen, and people who insist that because it comes from an animal rather than a lab that it must be better. You can go into diabetes websites and see people making the same arguments for bovine and porcine insulin versus the bioidentical synthetic insulins that are now available.

It has been my anecdotal experience in these forums that there are a always a few for whom nothing works well. At that point, is it really their thyroid that is the problem?


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## usmc4myson (Sep 26, 2010)

Lainey,
The STTM website never claims to be more than what it is. Patients with a voice. Opinions. Helpful hints. Support. Just like this forum.
Am I missing something? Of course, I don't believe everything I read, but for the most part, people who post on these boards are not lying or being deceitful! I think it's also important to use discernment. I know the difference between a fact, a conjecture, and a theory. 
However, I am angry that in 12 years of suffering, my doctor never once suggested that I try anything else. I didn't know any better...until recently. It was only this board, and other internet sites, that helped me when my doctor didn't. I owe my future health to them.


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## lainey (Aug 26, 2010)

I'll quote myself:
>>Let me just say, regard with suspicion ANY website that promotes a particular treatment, or sells items such as books, supplements or false hope.<<

This particular forum promotes, in my mind, discussion and the dissemination of reliable information. It is not focused on promoting a particular treatment or viewpoint regarding treatment. It encourages people to research their options and find what works for them.

The STTM website is nothing at all like this forum.

As for being deceitful on the internet--we all know there are two sides to every story--in forums such as these we only see one side--the posters'. While this may not be directly deceitful, a reasonable person would assume that anything they read is not the whole story.

I appreciate that you're angry that no one has ever suggested that you try an old treatment to see if it helps. Niacin used to be the first line treatment for high cholesterol--funny, it's experiencing a resurgence as a reliable "old" standby, and much cheaper alternative to the new and popular and expensive statin medications. As are patients, doctors are victims of popular thinking and conventional wisdom--which changes daily, even hourly it seems, due to the psuedo science that we all rely upon for making our health decisions.

At least you are aware now, so that you can try something different and see if it really will make a change in how you feel.


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## HeidiBR (Apr 4, 2010)

lainey said:


> This particular forum promotes, in my mind, discussion and the dissemination of reliable information. It is not focused on promoting a particular treatment or viewpoint regarding treatment. It encourages people to research their options and find what works for them.
> 
> The STTM website is nothing at all like this forum.


I totally agree. STTM actually calls T4 treatment scandalous and a conspiracy and only advocates one form of treatment. And I don't think they are even particularly friendly about it. This forum is helpful, knowledgeable, and has credibility.


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## Andros (Aug 26, 2009)

HeidiBR said:


> I totally agree. STTM actually calls T4 treatment scandalous and a conspiracy and only advocates one form of treatment. And I don't think they are even particularly friendly about it. This forum is helpful, knowledgeable, and has credibility.


I also agree about STTM. "Sometimes" they provide "food for thought" but I don't think that site is credible because they are biased. Biased always scares me.


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## HeidiBR (Apr 4, 2010)

That site seems very angry to me, somehow. And by espousing what they do in the way that they do they actually give a bad name to thyroid patient advocacy. Mary Shoman wants nothing to do with the site - and vice versa. Not to mention Janie makes a nice living through being an angry thyroid patient.


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## Andros (Aug 26, 2009)

HeidiBR said:


> That site seems very angry to me, somehow. And by espousing what they do in the way that they do they actually give a bad name to thyroid patient advocacy. Mary Shoman wants nothing to do with the site - and vice versa. Not to mention Janie makes a nice living through being an angry thyroid patient.


That's it! The anger. It comes through loud and clear. Very negative. Not at all uplifting!


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## HeidiBR (Apr 4, 2010)

I guess I don't understand all the anger. What purpose does it serve other than to get people riled up?


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## CA-Lynn (Apr 29, 2010)

I agree. If you're hell-bent on taking a specific drug and a doctor won't prescribe it, then find another doctor. Then if things go wrong, you've only yourself to blame.

BTW, my doctor won't prescribe Cytomel.


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## usmc4myson (Sep 26, 2010)

Yes, I agree it is an "angry" site. However, I think that some of that anger is simply a frustration at not being heard for too many years. I think the best thing they do is call attention to the matter, and as Andros said, food for thought. It's not really a forum like this one, so you've got the whole apples/oranges thing. I agree with you all that it is definitely biased...but if you truly stop and think about the long journey many people have had, you can understand why they are biased, and understand where they are coming from (like so many on THIS board do~thank you!)
It's not always as simple as changing your doctor. If it were, I would have done that LONG ago! Instead, it is the fact that MOST doctors don't give you any options~or they tell you that the problems you have are from your lack of exercise-or whatever else- and NOT a vicious cycle caused by the autoimmune portion of your disease.
Heck, that is nothing less than a bold faced lie. It IS outrageous and shocking! It is something to get angry about!

CA-Lynn, for 11 years, I didn't KNOW there were other drugs! My symptoms raged on, and my synthroid kept being raised.

Many women such as myself are also dealing with a tremendous amount of stress, pain, special needs kids and spouses, and then our "not your thyroid" health problems. I don't know how else we COULD feel...but betrayed, and yes, even angry. It makes me CRY. I know I can't stay in that place of hurt-and I really haven't. Instead, I am spurred on to learn as much as I possibly can about my wacked out body. If a site such as STTM and this forum helped me get to this place, then I say PRAISE GOD! 
I wish it hadn't taken almost 12 years to get here, but it did. The important thing is, I'm here now...
I just hope it is not too late for me. 
I have been feeling weird for over a week now, with trouble swallowing, no appetite, utter fatigue, etc. 
I just noticed today that the area right above my right clavicle has a golf ball sized swelling. I never saw it before, because it has never been there before. My Dad is in remission from Hodgkins Lymphoma, and also regular T-cell or B-cell Lymphoma. I have Hashimoto's. His mother, my Nana, had her thyroid removed when she was my age for cancer...we don't know what type. 
I know my risk of TL is higher because of my Dad, and because of my Hashi's. 
This is just a really really bad time to get sick.

My husband and I have been on the verge of divorce for almost a year now. I want it-he doesn't. He is telling me to leave and file papers. He has aspergers, and very little empathy for me. He refused to look at the lump on my clavicle. He was hurt that two days ago, I read him portions of an article about adrenal fatigue, and then told him gently that I could not get well if the stress continues and continues, as it has for 18 years. I need a divorce for my own physical and mental health. He just cannot understand that, and I feel stuck. Time just goes by. That's how life with him has been. Nothing really changes. 
Maybe it has all caught up with me. Too much "putting on a happy face." Almost a total lack of real communication. I have been trying to figure out what the heck is wrong with me...well, maybe that was it.

I would bet that if they did a study of women who were married to aspergers men, the rate of cancer and other illness would be higher. Especially if the aspergers was undiagnosed all that time.

Andros, I read the article you posted about Thyroid Lymphoma. I fit. I know it's a very rare type of TC...but my symptoms fit.
I should probably call the ENT surgeon who dx me with esophagitis and reflux. Tomorrow. 
I'm sorry if I tend to ramble on...it just feels so good to express my feelings~maybe I should write a book about what I have been through, and what it taught me. 
Thanks for "listening"~

Amy


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## HeidiBR (Apr 4, 2010)

Amy,

Some times it isn't always a thyroid issue. Sites like STTM tend to list a laundry list of maladies and then point out, "See, all these symptoms can be solved with dessicated thyroid."

Sometimes it is not thyroid. My husband was sick and I ate like crazy and gained 20 pounds in two months. The easy way out would be to say that my thyroid is out of whack. The truth is I just ate a lot of junk.

I'm glad that you have started to find the information you need to get to a better place. Information is a great place to start. But we still need the expertise of our doctors.


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## McKenna (Jun 23, 2010)

Aww Amy, I hear the frustration and pain in your post. :hugs:

I'm reminds of a friend of mine, who had thyca two years ago. She had a TT and was put on synthroid but lost her health insurance so she has been relying on her familydoc to monitor her levels. She's been feeling so bad lately, even though her doctor continued to tell her that her levels were fine.

She finally got a copy of the most recent results (another set that her doc said she was fine) and her TSH is 3.8 and her free T 4 was low. When she called the doctor about it, she was told that she is fine and perfectly in range. (THS range being .45 - 4.5 on her results). She was so surprised and upset. All this time she had been having symptoms, especially depression, and had been told all along that it wasn't her thyroid but something else. This is a woman who did not have thyroid symptoms before her TT. She talked to me on Sunday about this b/c she knows the struggles I've been through.

My own endocrinologist does the same thing to me and it does upset me too.

I've read on the STTM site and they do have a lot of good info. I've found a lot of good info. from many different thyroid sites. I think that with every site, forum, person's opinion, doctor's opinion, etc., that we have to take what will work for us and leave the rest. We have to be discerning and take into account that not everyone is cookie cutter or will have the same experience, same treatment, same ideas, etc. Thank God we have options that take into account our differences in body chemistry and treatment.

I've been on sites that shred people for being on natural thyroid, and on sites that shred people for being on synthroid. I'm happy that THIS site is accommodating to people on both natural and synthetic. Which is why I'm here. arty0006:


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## Andros (Aug 26, 2009)

usmc4myson said:


> Yes, I agree it is an "angry" site. However, I think that some of that anger is simply a frustration at not being heard for too many years. I think the best thing they do is call attention to the matter, and as Andros said, food for thought. It's not really a forum like this one, so you've got the whole apples/oranges thing. I agree with you all that it is definitely biased...but if you truly stop and think about the long journey many people have had, you can understand why they are biased, and understand where they are coming from (like so many on THIS board do~thank you!)
> It's not always as simple as changing your doctor. If it were, I would have done that LONG ago! Instead, it is the fact that MOST doctors don't give you any options~or they tell you that the problems you have are from your lack of exercise-or whatever else- and NOT a vicious cycle caused by the autoimmune portion of your disease.
> Heck, that is nothing less than a bold faced lie. It IS outrageous and shocking! It is something to get angry about!
> 
> ...


That's okay; just vent away. I am sure that every single one of us here understands by way of having similar experience.

{{{{{Amy}}}}}









I could not agree more; seeing an ENT ASAP would be the best course of action.

Asperger's is difficult; did a little research on that a while back. I am keeping "both" of you in prayer.


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## midgetmaid (Jul 22, 2010)

Hon, you need to call a doc about that swelling above your clavicle-TODAY!

Renee


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## usmc4myson (Sep 26, 2010)

I just got home from the doctor. I had found an Integrative Medicine M.D. about an hour from me, and last week set up a physical for next month...

However, based on the nice lump, I knew I couldn't wait till May.

This morning, I called their office and she agreed to see me today. 
I cannot BEGIN to tell you how amazed I was with the care I received today. I received CARE for the first time...in a really long time!!!  I received CARE!!! 
She spent 45 minutes with me...and that was squeezing me in to her schedule. 
She ordered an ultrasound of the thyroid and the neck, which I was able to have done right in the same building. The US tech found that my nodule had not grown since January. YES! She also found 3 or 4 lymph nodes enlarged in my neck and right next to the nodule--which I didn't have before.
She could clearly see the huge lump-it is at the base of my neck-an inch and a half up from that pointy part of the clavicle. Supraclavicular. It gets bigger if I move my neck and shoulder a certain way. She could not find a lymph node or mass with the ultrasound to correspond with the lump. She said that was the limitation of ultrasounds. If there is something deeper in there pushing up on the soft tissue-I would need a CT scan to show it. The deep lymph nodes are impossible to image with an ultrasound. In that case, my doctor will order a CT scan of my neck and chest.

So tomorrow, I will get my bloodwork done. My good doctor ordered a ferritin, total iron, calcitonin, TSH, FT-4, FT-3, Reverse T-3, B-12, vitamin D, metabolic panel, lipids, and a CBC with diff. 
We will get labs back and go from there as far as meds/doses. She is very open to trying different meds with me. At my appt in May, we will also discuss adrenal fatigue and hormones. She also wants me to eat an anti-inflammatory diet and to keep exercising as I am able.

So...thank you everyone for your support and advice. I am so thankful to you for suggesting that it is time for me to get a new doctor. I can't quite wrap my brain around the fact that I actually found one!!! Thank the Lord, is all I can say.

Even though I am exhausted from a long day...I am going to get dressed and take my butt to the gym for a little bit.

Yay for good doctors!!! Yay for you guys!! Yay for me!!

~Amy


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## midgetmaid (Jul 22, 2010)

Alright! This is very positive news!

Renee


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## Andros (Aug 26, 2009)

usmc4myson said:


> I just got home from the doctor. I had found an Integrative Medicine M.D. about an hour from me, and last week set up a physical for next month...
> 
> However, based on the nice lump, I knew I couldn't wait till May.
> 
> ...


OMG!! Amy!! How in the world did you get so lucky! It must be your time to shine!! This doctor is a jewel; a real keeper and I personally am very much relieved. Whew!

Go kick some butt and please do keep us informed.

I am sure that you feel much joy right now. Ironically, knowing what is wrong can bring a great relief! We all know how you feel!


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## usmc4myson (Sep 26, 2010)

Thank you for sharing in my excitement, Andros and Renee!

I will post my labs when I get them...on the lab discussion page.

This girl has officially become a member of the Found a Good Doctor Club...priceless.
(I believe this is my shortest post ever! LOL)

~Amy


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## Andros (Aug 26, 2009)

usmc4myson said:


> Thank you for sharing in my excitement, Andros and Renee!
> 
> I will post my labs when I get them...on the lab discussion page.
> 
> ...


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