I have always been hungry for statistics on the usage and efficacy between the different treatments of hypothyroidism. Because of the stranglehold of big pharma we are not likely to ever get an estimate of the true population statistics. However I found ONE sample on the Internet tonight. One sample doesn’t get us very far but it is still interesting.
The sample comes from Dr. Westin Childs, he is in the US and reports the following:
In my practice the breakdown of medication goes something like this:
•60-70% of people do the best on NDT
•20-30% of patients do best of T3 only medications
•5-10% of patients do the best on T4 only medications
.
This is encouraging in as much that if we only feel well on T3-only or NDT, we are not a tiny unusual minority, our responses to these medications are perfectly accurate. We should not be begging and pleading for something considered outside of the norm, our requirements are not unusual, they are expectations for the best treatment for our illness.
I wish we could get about 30 physicians to publish similar studies then we could present, or at least publish the truth about this scandalous situation.
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That's really interesting information! By the way doctors talk here you'd think it was '90% do well on Levo and the other 10% - well they're just depressed'!
60-70% do better on NDT. Probably as it is more conducive to the human body but, better still, it provides all of the hormones a healthy gland would produce.
20-30% do best on T3 - probably due to a Resistance that it is difficult to convert T4 to T3.
5-10% do best on T4 only.
Big Pharma had the money to do 'promotional' incentives to doctors etc and gradually T4 was the most prescribed hormone replacement worldwide and, seemingly, they all speak with the same tongue.
UK has followed with eventually NDT being withdrawn through untruthful statements. Now T3 has been on the 'hit list' even though the patient had very beneficial effects with the addition to T4 or T3 only. Increased cost by Pharmaceutical company who should have been investigated and the only one to be licenced. Other T3s are also available but doctors wont prescribe as they are unlicenced. Unlicenced doesn't mean it will kill the patient.
I would think it is the people who actually swallow these products are the only ones to decide which suits them: leads them to a recovery: removes all clinical symptoms and back to a normal life that they forget all of the suffering they've gone through (well nearly).
Instead we get dictatorial decisions that only levothyroxine should be prescribed. Patients frightened into submission with untruths, i.e. we will get osteo or heart problems.
Do they not think that we can do our own research and, thanks to the forum, help some get back to some normal life instead of wondering why we are worse on a particular hormone replacement and refused the opportunity to try alternatives. Sometimes it takes more than a few trials before we find the right one.
We now do not have an option unless we source it ourselves.
Many have monetary restraints or have lost their livelihoods through not being offered options.
what a fabulous insight ..... and you are absolutely right... if only someone would pick up the gauntlet on this and run with it.......with the politicians all falling over themselves to get voted for next election...we really ought to be voting with our voices....someone should get this as a story on tv....if the story were enough to embarrass politicians, maybe a newspaper or tv station would take it up for headline news one evening.....
It's anecdotal evidence. The medical profession and governments aren't going to 'pick up and run' with someone's opinions. This needs hard research proof not a physician's own possibly biased anecdotal experience
Not to be a downer, but while interesting, those stats aren't reliable as a source to estimate effects on total thyroid patient population.
1. It's in the US where NDT is prescribed more commonly as is T3
2. The doctor may use NDT as his/her preferred medication, with T3 second choice
3. His patients may know that and so his patient population has sought him out as an NDT physician i.e. It's a biased sample
We need proper research: large scale double blind randomised trials with large population and thorough testing of blood and physiological impacts. The DIO2 mutation effect needs specific testing to determine if in fact T3 does help us differently from not-mutated population. unfortunately this type of research is lacking
It doesn't' mention those on a T4 T3 mix. That's what I was on and greatly improved on that. Just 5 days after leaving off the T3 I am struggling so that's enough for me to know what was best for me. They just don't listen to the patient.
Dr. Westin Childs is a quack....or so I have been told.
He is getting HUGE kick backs for promoting NDT.
I have no thyroid gland and NDT almost killed me as well as taking more than 5 mcg of cytomel with my Eltroxin.
The human body needs t4 in abundance.
Our brain ( basically the central nervous system) only has ( mainly) t4 receptors, not t3 receptors...and converts it to t3 as needed...direct t3 is useless in this case.
Tired Thyroid and many, many other reputable sources state this time and time again...
I had a world renowned endo in Texas who saved my life.
I take T3 only and it's saved my life. T4 only made me dreadfully ill. T4 is, in effect, a pro hormone and needs to convert to T3 before it can be of any use. I take no T4 whatsoever but studied for, and gained, an MA while taking T3 and my brain is fine in every way. 😊
You raise an interesting point about the brain and it's needing T4 via T4 receptors. I have read that. However mental illness use to be treated successfully (maybe still is) with T3 only, so this is evidence that T3 can, on it's own cross the blood brain barrier. In some of the papers I have read it says that this doesn't happen. Interesting.
Hi Gardenofeden, where did you find that info about the brain only having T4 receptors? That's not fitting with what I've been told so I'd like to know how reliable the source is.
Also, spreading a rumor that Dr so-and-so is a quack is the beginning of denigrating a doctor who doesn't happen to be towing the party (Levo) line. Britain defamed one doctor to his death, maybe big Pharma is encouraging that practice now in the US. I wouldn't be alive if I could only get doctors who tow the party line.
BTW I realize that just one sample is only anecdotal it's just that it is so rare to see anyone brave enough to publish his statistics I was so happy to see it. Like I said, if we could just have a few more brave souls we could at least petition for the more scientific studies which we need.
Can you share you doc's name. I am 2 weeks out from having thyroidectomy and my doc said "weight loss is calories in, calories out". I want to take control. Childs is in my backyard but i don't want medical advice based on kickbacks. Can you help? Can you tell me who your doc is in texas? Romeztheworld@gmail.com
Cancerschmancer, I am miles away in California not in Texas. One piece of info I can give you however is that directly after your thyroidectomy you should be on t3 (Cytomel) only for about three months. Then you move onto either Levo or NDT (use Armour). My first endocrinological got a few things right and T3 only as a first medication was one of them. You will then need a GP who is willing to learn about thyroid problems and willing to do blood tests requested by YOU as you learn. You will have to read up and study as much as you can about your condition since the medical profession is very ignorant about thyroid conditions.
Don't worry too much about the operation, I am sure you are very scared but once you go to sleep it is mostly all over. I will keep you in my thoughts and send "good energy" your way. You will be OK, it is something that will keep you alive for decades to come whereas the cancer would have you dead within 6 months! Think of it that way and you will get through it, that's what I did.
Nobody gets kick backs from NDT recommendations. Please. Cite your reference. Dr. Child's has helped may in the US with his free information. He makes his money by selling supplements. No different than any other functional medicine doctor in the US.
Yeah, but I ended up here and read the thread. I used to be a newbie and it was comments like this with no proof which delayed my return to health. Love ThyroidUK my neighbors to the north.
Thank you for this - I've wondered about him many times. I had my thyroid removed as well and would love to know if you have had problems in other areas since your thyroid was removed. I would never had thought there could be so many issues but I am on anti-depressants, sleeping pills, and a host of other things. Thank you
While it's well-publicized that Big Pharma, specifically those promoting Synthroid, made their rounds to all the endocrine groups, medical schools and injected their claims into pharmacy manuals, the effort to obtain better treatment might be better served when we know why many doctors are so resistant to NDT and T3 therapy and then address the real reasons why they won't prescribe them.
I believe that the most effective strategy any thyroid patient can have is to develop the ability to negotiate. You CANNOT convince a doctor against his will by providing information written in a book. He's not sold. When you discover the primary reason he's resistant, now you have his attention.
Doctors tend to give T4-only for a number of reasons (some based on untruths):
1) It's once a day dosing which, from a pharmacy perspective, is an advantage. T3 has a short duration, requiring multiple doses per day, and there are fluctuations in blood levels, therefore more chances that overstimulation will occur.
2) T4 works by conversion, providing a form of slow release, converted as needed, giving consistent blood levels over a long period of time. Less chance ending up in the Emergency Room.
3) Since "everybody" prescribes T4, there is less liability. They can't lose their license staying with the herd.
4) They can use the TSH test with impunity, as the test was designed for therapy that was T4 only.
5) NDT are not regulated and the potency is questionable (just another excuse not to use it, not based on fact)
6) They can adjust the dose every 6-8 weeks versus every 2 weeks.
7) Doctors hate being wrong and hate it when a treatment doesn't work. That's why they developed the excuse-mechanism of "It's Not Your Thyroid" when you still have symptoms and your TSH is in range.
8) Treating someone with T4 only is simply less complicated overall (for them)
9) Doctors are woefully behind (average of 17 years) when it comes to implementing current effective treatment. They tend to stick with what they learned in medical school or use consensus thinking. They don't read medical journals.
Of all the reasons listed above, the one that probably concerns doctors the most is the LIABILITY of using NDT and/or T3-only. Everything else is a smokescreen.
What if a patient was willing to offer the doctor a way to reduce his or her liability? It's the elephant in the room. Doctors don't say it but they're thinking about it.
ASK. "Doctor, I'm getting the feeling that the real reason you don't want to prescribe NDT or T3 to me is because you're concerned about your liability."
DENIAL
"Doctor, I can understand how you feel if that's the case. That's why I'm going to provide you with liability-proof documentation. Neither of us wants to see harm done. Since this IS a safe and effective drug, let's go ahead and try it for a couple of months."
"Let's RULE IT OUT" (if they claim you don't really have hypothyroidism). Those words provide the doctor with the excuse they need in case you don't get better. Now they don't have to fight you to support their ego.
Documentation:
What would happen if the patient offered to monitor vital signs and any symptoms of overstimulation and provide a weekly report to their doctor?
What if the patient offered to obtain the necessary tests and then explain how they worked, all the time assuring that they can help the doctor with the interpretation of the tests and that the doctor is definitely liability proofed?
What if the patient countered any objection with direct questions relating to the reason the doctor gives to refuse treatment with NDT and/or T3 and provided articles written by the doctor's peers that debunk the TSH plus T4 treatment plan?
Many patients, thanks to websites like Stop The Thyroid Madness, are well-educated on thyroid diagnosis and treatment. Now's the time to equip those patients with the necessary negotiating skills to overcome doctor's objections. Then patients won't have to spend as much time searching for a thyroid smart doctor. They'll have created one by eliminating the barriers.
Gardenofeden, thanks for the reference. I'd like to ask you a favor. Would you be willing to share as many reasons as you can think of why doctors resist treating with NDT and/or T3 or rely exclusively on a TSH test?
I want to make a master list of every possible excuse and then discuss and create a method on the best ways to overcome their objections.
I've spent many hours reading about patients who were thoroughly thyroid educated, only to be shot down (including myself) by a blunt refusal to alter therapy. Doctors don't seem to be the least bit phased by their obvious lack of knowledge, and in fact only dig their heels in deeper when offered solid evidence of a global failure in thyroid treatment.
"A man convinced against his will is of the same opinion still."
I began to realize that doctors have many reasons but most of them might just be a smokescreen, with the real reason being liability by their medical board.
I know this is true with a Nurse Practitioner I saw who was terrified of the consequences and who went "white as a sheet" when my TSH result came back at 0.03 mIU/L while on NDT-90, even though I had no hyper symptoms. As she "fired" me, she winked and said, "Well, I can't tell you how to take this medication but you have plenty of refills..."
If patients were able to convince their doctors that they could make the doctor "liability-proof" there might be more doctors willing to experiment with something other than levothyroxine and a TSH test.
Suggestions of how to do this:
Doctors seem to be convinced that anything with T3 is "dangerous" or "life-threatening". They will talk about vital signs showing compromise and how hard it is to maintain reliable blood levels.
What if the patient offered to monitor vital signs along with any symptoms that suggested over-stimulation and file weekly reports?
What if the patient asked directly, "If you were to prescribe NDT and/ or T3, what can I do to make sure you have no liability?" There will probably be denial but their expression will tell another story.
What if the patient were to write a "contract" with the doctor, stating exactly what the patient wanted regarding therapy, and in return, the patient would provide any data, including blood tests, as long as the doctor would guarantee that dosing would be based on symptoms and NOT on a TSH test result?
What I'm talking about is moving to the second phase of patient education, which is learning the skills of negotiating. Sure, some doctors (endos) are unlikely to ever change their minds, but if 20 percent of the doctors who were opposed to anything other than TSH/T4 were to convert, that would be a victory.
Since doctors tend to be consensus thinkers (don't read medical journals, rely on other doctor's opinions) then conceivably more and more could be converted as one doctor who notices better patient outcomes discusses it with a colleague, who then implements the same procedure.
The doctors, or at least some of them, know very well that they are letting down their patients and subjecting them to a lifetime of illness unless the patients discover the truth.
After my vehement complaints to the local CCG about the blacklisting of NDT, my GP, presumably in collusion with the CCG, sent me to see a "consultant endocrinologist", (who turned out to be a thyroid and breast surgeon!), knowing full well that she would immediately offer me NDT. My GP admitted that to me. BUT it was on private prescription only, which missed the point entirely as that would cost me much more than Thyroid-S and would fail to show that NDT was the correct medication for me.
Following this the genuine endo offered me T3/T4 in the same ratio as in Armour which I again refused as There is no way in the world I will ever let Levothyroxine pass my lips again.
My GP, the endo and the GP's forming the CCG are therefore failing to follow the INSTRUCTIONS given to them by the GMC and should be reported to them, in a similar manner that Dr Skinner was hounded to death by them. When I EVENTUALLY get a written answer to my complaint to the local APC (sent last September and now allegedly being written as reported on their web site) that is one of my next tasks, which I consider to be a serious breach of any doctor's duties.
Just as I thought, one of the articles states that cancer can be caused by being hypothyroid. I had kidney cancer whilst on levo and constantly altering the dosage up and down in order to try to feel well, whilst repeatedly telling the GP that I was on the wrong medicine for being thyroid-less. I was right, he was hopelessly wrong.
I now take NDT and feel a lot better, he is still hopelessly wrong.
Medical ignorance could very easily have killed me but fortunately kidneys come as a matched pair.
Not caused by levo itself but by the lack of it whilst I was attempting to get the right dose. What else could I do other than experiment with different doses to find the one that suited me best when docs offered me no alternative medication?
Gave in eventually having lost all the lifelong faith I had in doctors and took NDT. I used to laugh at those who insisted on taking their non-recommended medicines, but I don't now.
If I could live my life again there are many things I would not do again that seem to have badly affected my health,and I am inclined to believe that some of my illnesses would not reoccur.
If I could prove what I believe in a court of law, I would be a lot richer financially.
I am not sure you keep posting that link is helpful. You have already besmirched Dr Westin Price, who only practices what most advanced functional medicine practitioners advocate. Whatever you think of him and them, at least they are prepared to listen, analyse and try different treatments, unlike most allopathic doctors
. I had great success working with Dr Peatfield, who is a man of great integrity and knowledge. Hopefully you will not say he is a quack also?
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Just didn't want you to be holding your breath waiting for a response.
Increase NDT or Switch back to Levo+T3?
Binned all my Levo - NDT only now but T4 still low
Switching from NDT to T3 only - what dose?
Should I transition from t3 only to NDT?
