Site Review-Stop the Thyroid Madness.com:
Well, here’s the skinny. Globally, patients have come to a unified conclusion that for just over 60 years, a needless, blundering and bona fide medical scandal has compromised their lives. It has affected health, overwhelmed relationships, and put money in the pockets of pharmaceuticals who didn’t–and don’t–deserve it…
Can a whole branch of medicine REALLY be so bad that it can be considered a scandal from top to bottom?
Yes. Absolutely. In fact, the owner of Stop the Thyroid Madness (STTM) is letting endocrinology off a bit easy. It really, REALLY is that bad.
Doctors use inaccurate tests, prescribe synthetic drugs that often make people worse, avoid safer drugs that work better, they won’t look any further, and when patients tell them over and over that it’s not working, eventually the doctors just blame it on the patients. Scandal is putting it nicely. I’m an engineer, and I like to tell people that if engineers were as incompetent as conventional endocrinologists, nothing would work and they would all be fired.
OK, don’t get me started. This is supposed to be a review another angry thyroid patient’s blog, not mine!
I saw STTM mentioned on a forum today and decided that it was time to check it out. It’s great. Everyone who is affected should at least check it out and see some of the features and resources.
There is a book too, “Stop the Thyroid Madness: a Patient Revolution Against Decades of Inferior Thyroid Treatment,” by Janie A. Bowthorpe.
There really should be a patient revolution. When I opened the site’s front page, it reminded me of how angry I was at the medical system for their incompetency, and I also thought, “dang, this looks like something I would do!”
Here’s a summary of how STTM defines Thyroid Madness:
Thyroid Madness Defintion:
1. Treating hypothyroid patients solely with T4-only meds.
2. Dosing solely by the TSH and the total T4, or using the outdated “Thyroid Panel.”
3. Prescribing anti-depressants in lieu of evaluating and treating the free T3.
4. Telling thyroid patients that desiccated natural thyroid like Armour is “unreliable”, “inconsistent”, “dangerous” or “outdated”.
5. Making labwork more important than the hypo symptoms which scream their presence.
6. Failing to see the OBVIOUS symptoms of poorly treated thyroid, and instead, recommending a slew of other tests and diagnoses.
All six are pretty accurate. Unless you have been through it, it’s hard to get across how frustrating dealing with these doctors really is. I remember writing up a longish story on my personal site about this when things got sorted out, and some people read it and said “wow, you seem pretty mad!”
Besides bashing doctors that deserve it, STTM has some useful features.
There is a page describing why the standard TSH test is useless. Read it here.
Another good one is “T4-Only Meds Do Not Work,” read it here… Plus, there is a page on symptoms, a page called “stories of others,”, “How to find a good doctor,” and a link to sites that can help you get your own blood lab sheets and start taking charge of your health.
This thing about patients having to work up their own lab sheets to get the right things looked at is just remarkable. I’ve done it myself. I didn’t order a lab slip on-line, but I took one from my doc and added the tests to it on the way to the lab, because my doc wouldn’t listen when I tried to explain what was being overlooked.
If this crappy synthetic thyroid that doctors keep shoving at people is the wrong thing to use, what is right?Read “Natural Thyroid 101.”
There are 2 answers (maybe this is why doctors don’t want to go there, 2 things is too complicated for them.)
STTM has a good summary of natural desiccated thyroid, like Armour or Naturethroid, or something similar from a compounding pharmacy. These are a mix of T3 and T4.
Some people get T3-only, which is what is in Cytomel, or a compounding pharmacy. (This is what I use.)
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If this source is correct, almost 7% of Americans have some kind of thyroid condition. That is 20 million people, or one in every 15.
That’s weird, because when this comes up in conversations, the CW seems to be that it is very rare, or if you are affected, you are just an “exception,” and what you have to say doesn’t matter. No one else has a thyroid issue, so shut up and exercise, or whatever.
A lot of these 20 million don’t know. A lot of them do, but they get horrible medical advice, and horrible medicine. That is one of the reasons Mary Shomon’s books are so popular. There are so many fed-up and frustrated patients, they are all over the internet and bookstores looking for better answers than they get at the doctor. Mary is a patient too, so she has been through it, and made a career out of helping people figure things out, and confront those terrible doctors.
My own doctor’s office has a handout in the front office that says that most endocrinology, as it is practiced in the US, is 20 years behind the times. I believe it! The healthy skeptic says:
One of the biggest challenges facing those with hypothyroidism is that the standard of care for thyroid disorders in both conventional and alternative medicine is hopelessly inadequate.
Can it really be THAT bad? Yes, it really is that bad.
What to do? Read!
Another great source is Dr John C Lowe, a thyroid rebel… (you have to be a rebel in a field like this one)
I haven’t included any professional associations in this list, because I don’t know of any that I think do a good job.
Beware: Info about thyroid problems that steers you away from natural medicine is most likely to be paid for in one way or another by people selling synthetic hormones, like Synthroid, the 4th highest selling drug in the US, and a disaster. It makes a lot of money, bad doctors love it, and many patients hate it and can’t do anything about it.Share on Facebook
It’s frustrating to read the news and reports about the modern “epidemic” of type 2 diabetes. It should be no big mystery. People get too much sugar and simple carbs, and it’s wrecking just about everyone’s blood chemistry. There are people that have explained this very well, but they are being ignored.
I have been through this myself, so I know what it’s like, and what “experts” are missing.
It’s Not Rocket Science
Throughout most of human history, people consumed maybe 80 grams of sugar a day. Today, people are consuming about 350-600 grams, maybe more. This explains the type 2 diabetes problem, insulin resistance, and what is now being called “diabesity,” the combination of a wrecked blood chemistry and out of control weight.
It’s not rocket science. The answer is not more drugs. It’s simply to get the sugar consumption back to a reasonable level. Doctors and experts are acting puzzled about this problem and the answer is staring them in the face. It’s frustrating to see, because they really should know better.
It’s the Insulin, Stupid!
When troubleshooting a problem, doctors typically look at a patient’s blood glucose (blood sugar), and if it is OK, they say “Fine, you are not diabetic.” What they should say is “You are not diabetic-yet.”
What they need to be looking at is insulin as well. You can be taking in way too much sugar, and be well on your way to diabetes, have serious weight problems that stress the system, insulin resistance, all that, and doctors are not even looking in the right place. A high insulin level is easy to spot, but they don’t look!
My favorite explanation is that it is like the oil pressure warning on your car’s engine. The light comes on when oil pressure drops, which is not much help. It’s pretty much a light that tells you “Oops, your engine is toast now, call a tow truck.” If you knew all there was to know beforehand, like maybe the oil is leaking or has turned to mud, maybe you could have done something about it first.
This happened to me as well. I was asking doctors for years to explain what was wrong, and they would say “Blood sugar is fine, you are not diabetic, so no problem there.” One doctor, the one that was helpful, also looked at insulin, and was immediately able to explain what the others missed, and had a plan to do something about it-get insulin down to a normal level. This worked.
Insulin is a hormone. It does a lot of things. When there is too much of it, it screws a lot of things up. Why this is not part of a standard checkup is just a mystery to me.
What Do I Care?
Your insulin level doesn’t print out for you by itself. If you want to know what it is, ask your doctor next time you get tested for whatever. If you are starting a diet or exercise program, you should know what it is so you can plan accordingly. It may explain a lot of things, in fact, it probably will!
Some Very Good Reading
Here’s a very good summary of what you should know from Mark’s Daily Apple-
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1) The levels of blood glucose stay higher longer because the glucose can’t make it into the muscle cells. This toxic glucose is like sludge in the bloodstream clogging arteries, binding with proteins to form harmful AGEs (advanced glycated end-products) and causing systemic inflammation. Some of this excess glucose contributes to a rise in triglycerides, increasing risk for heart disease.
2) More sugar gets stored as fat. Since the muscle cells are getting less glycogen (because they are resistant), and since insulin inhibits the fat-burning enzyme lipase, now you can’t even burn stored fat as easily. You continue to get fatter until eventually those fat cells become resistant themselves.
3) It just gets better. Levels of insulin stay higher longer because the pancreas thinks “if a little is not working, more would be better.” Wrong. Insulin is itself very toxic at high levels, causing, among many other maladies, plaque build-up in the arteries (which is why diabetics have so much heart disease) and increasing cellular proliferation in cancers.
4) Just as insulin resistance prevents sugar from entering muscle cells, it also prevents amino acids from entering. So now you can’t build or maintain your muscles. To make matters worse, other parts of your body think there’s not enough stored sugar in the cells, so they send signals to start to cannibalizing your precious muscle tissue to make more – you guessed it – sugar! You get fatter and you lose muscle. Woo hoo!
5) Your energy level drops, which makes you hungry for more carbohydrates and less willing to exercise. You actually crave more of the poison that is killing you.
6) When your liver becomes insulin resistant, it can’t convert thyroid hormone T4 into the T3, so you get those mysterious and stubborn “thyroid problems”, which further slow your metabolism.
7) You can develop neuropathies (nerve damage) and pain in the extremities, as the damage from the excess sugar destroys nerve tissue, and you can develop retinopathy and begin to lose your eyesight. Fun.
Eventually, the pancreas is so darn exhausted, it can’t produce any more insulin and you wind up having to inject insulin to stay alive. Lots of it, since you are resistant. Congratulations, you have graduated from Type 2 to Type 1 diabetes.
Sure, we all know that one ancedote doesn’t prove much, but I hear too many stories like this one, and this one I got involved with myself. I just can’t believe how bad endocrinologists are sometimes-
Don’t Believe Something Just Because a Doctor Says So
A friend at work was told by an endocrinologist that his thyroid was overactive due to a cyst on it, and it would have to be treated with radioactive iodine, which would almost certainly mean he would be on thyroid meds for life, and his health would never be the same.
As it turns out, the doctor was wrong. He was able to do a little research himself, find a better solution, and he’s fine, and no crazy treatments that would change his life were required.
How can this be? Maybe it is just one time, but I don’t think so.
To protect my friend’s privacy, I will change his name to Bart.
A Scary Diagnosis
Bart was 24 and in excellent health. He’s an engineer at a NASA center, gets a lot of attention from the girls, and a workout freak. He’s often at the gym twice a day. He starts having some symptoms and is dragging a bit, so he goes to see a doctor. Long story short, a TSH test shows that his thyroid is very over-active. TSH is way under normal, so the diagnosis was hyperthyroidism.
His doctor did a scan and claimed that a cyst was seen on his thyroid, which would explain why it could be overactive. The fix would be to remove all or part of the thyroid with surgery, or zap it with radioactive iodine. Either option is a scary thought for a young guy who is not used to such things, and a permanent life change is not something anyone would look forward to.
The problem with either option is that it would be nearly impossible to either remove the right amount of thyroid, or to zap it just right so it works normally in the long term. As a result, Bart would almost certainly be on a synthetic thyroid (T4) for the rest of his life. I know about this stuff myself and I don’t trust it at all, and I don’t trust the numbers they use to decide what normal is. My friend is about to go from a healthy gym rat to a wreck.
Off To the Bookstore
Bart knows I have a thyroid history, and soon we start talking about it. He tells me what the doctor wants to do and I just can’t believe it. Based on one number, and what they think they saw on a scan, these people want to do the radioactive iodine thing on a healthy, active young guy and change his health forever. I just didn’t believe them and wanted him to study it and make his own decisions. Fortunately, he did.
From a local bookstore, I found Mary Shomon’s Living Well with Hypothyroidism, and Dr Mark Hyman’s Ultrametabolism. Neither of these books were an exact match for what we were looking at, but they had enough information to lead Bart in the right direction and he could use google from there.
We also went through his blood test results for clues. The TSH was in fact very low, but overall he was not a wreck. Whatever happened must have been a bit recent. I thought that someone with chronic, long term problems would have a lot more problems, even though I really wouldn’t know what. We also talked about how much he was at the gym, because I would think that maybe this could explain it, and maybe easing up on the training for a while would be a good idea before just doing something drastic.
Even though Shomon’s book was about not enough thyroid (hypo), not too much (hyper), Bart found enough information, combined with some google research, to go back to the dr and suggest something else. There are antithyroid drugs available, and his suggestion was to at least try one for a while and see if something changes.
Telling the Doctor What to Do!
It was a hard sell, and it wouldn’t, in theory, do anything about the cyst, but he was able to talk a doctor into it. It didn’t take long to discover that he made the right call.
His TSH started going back to normal sooner than expected. Soon he got a call and said that a follow up scan showed that the cyst wasn’t really there. Maybe it was an error in reading the scan before. (I would suggest maybe they expected to see something, and thought that they did.)
In about half the time that was planned, his TSH was fine, his scans were clean, and he had no symptoms or complaints. That was over a year ago, and he’s just fine. I think he eased up on the overtraining a bit, and learned that doctors can make some really big mistakes, and you have to take matters into your own hands.Share on Facebook