I suspect there might be a few comments on this just-posted thread:
Matt Ettleson
Ed: @NorthwesternU
/@NUFeinbergMed
. Former resident/CMR @UMIntMed
. Clinical Instructor @uchicagomed
. Focus: improving care of thyroid disease.
Chicago, IL
1h
1/ How is thyroid hormone prescribed across the US? Our new claims study shows that prescriptions of desiccated thyroid extract (DTE) and T3 are increasing, especially in the western parts of the US
2/ 10% of new thyroid hormone prescriptions in 2020 were for DTE, which is a form of animal thyroid hormone that includes T4 and T3. This % nearly doubled from 2010 (5.4%)--> 2020 (10.2%).
3/ States with lower densities of primary care and endocrine physicians had relatively higher rates of DTE and T3 prescriptions. Similarly, residence in more urban areas was associated with higher likelihood of receiving DTE or LT3.
4/ We don't yet understand the reasons for these trends, but probably changes in behavior both from patients and prescribers are important.
5/ Next steps:
1) better understand the decision-making process in thyroid hormone treatment
2) measure long-term outcomes/safety of T4 + T3 therapy (with DTE and combination therapy)
I grew up in NY and moved to CA about 30yrs ago. I thought I was moving somewhere where the Drs would be more flexible and advanced as I suspected endocrinological challenges ahead of me. CA Drs disappointed me. I suspect that since there is such a flow of Drs and Medical residents to CA from NY and other Eastern states that that is why it lags behind other Western States in T3/NDT use. That said I think things are changing for the better and Drs there are actually listening to their patients more and less like thyroid police in general.
I had to chuckle at " I thought I was moving somewhere where the Drs would be more flexible and advanced". I don't know which province you moved to, but here on the prairies the wheels turn slowly and people are known to be conservative (possibly backwards). This seems to also (or even more so) apply to doctors. Never in my life have I encountered so many arrogant and, at the same time, incompetent doctors. Interesting, though, that doctors from the East of the U.S. are moving to Canada. Here we seem to lose our best ones to the States. I do hope, though, that you are right and a change is afoot. So far I have not experienced it, but am surely looking forward to even minor improvements.
P.s: I know quite a few people who cross into the U.S to receive more appropriate treatment. Could it also be a matter of "you get what you pay for"?
In the U.S., the area is constituted by most or all of the states of North Dakota, South Dakota, Nebraska, Kansas, and Oklahoma, and sizable parts of the states of Montana, Wyoming, Colorado, New Mexico, Texas, Missouri, Iowa, Illinois, Indiana, Wisconsin, and western and southern Minnesota. The Palouse of Washington and the Central Valley of California are also prairies.
The Canadian Prairies occupy vast areas of Manitoba, Saskatchewan, and Alberta. Prairies contain various lush flora and fauna, often contain rich soil maintained by biodiversity, with a temperate climate and a varied view.
Yes, definitely contains various lush flora and fauna, but not any good doctors and I'm not sure about the temperate climate. Here in Manitoba it is boiling hot in summer and freezing cold in winter. We only have those two seasons...except the third one, which we call construction. That's when they try to fill the numerous potholes we acquire in winter.
Varied view very good. You can see for miles. Everything flat as a board.
Hahaha! Never entered my mind. Being all focused on Canada. Human communication is just riddled with misunderstandings. Thanks for clearing that up for me.
My bad - yes I moved from NY to California. Sorry for such an error! I was downstate in NY, and in Cal was in NorCal. Now in the UK which presents all sorts of communication challenges- geographical and medical.
See how much fun we can have across the oceans and borders!? So much better than being at each other's throats. Just clear up some miscommunication and we're all good.
Over the past ten years more information has become available to patients. They have the ability to reach out to support groups and research online. 2020 was the first time I found out that DTE and T3 existed and was given a prescription to try. In the US the most forward thinking Drs are going to be located in Urban areas. You may find several functional health clinics in these areas which advertise the use of DTE and T3. Health, wellness, and balancing hormones is big business here in the Dallas Tx area. No surprise in areas with less endos because they're the last Drs to suggest T3 or DTE. I think younger generations are less willing to accept sub par treatment from Drs and they're starting to age and discover all is not well with their thyroid treatment. Manufacturers like NP Thyroid sends samples to Drs to hand out to patients so that could explain the increase in prescriptions. NP Thyroid is very inexpensive compared to some of the name brand Levos.
But we do find that endos at the best academic centers treating thyroid cancer are reluctant to prescribe combination therapy (DTE or T4 plus T3). Wonderful Arizona doc who is now head of Johns Hopkins endo surgery said they were never taught anything about DTE or T3. But she was open to learning all she could.
You’re lucky if you can get an appointment with an endocrinologist less you Han four months out. A lot of us work with our primary care provider (MD, nurse practitioner or PA) to order tests and meds. Many are quite knowledgeable.
States with lower densities of primary care and endocrine physicians
This could read as a comment on the mental capacities of the physicians in the other states!
But the underlying reason for the change is, I am as sure as I can be, the internet.
From my personal, and entirely UK, perspective, without the internet, how would I ever have found out about desiccated thyroid?
It was early in my thyroid interest I found out online in "news groups". Previously, I'd known nothing but had heard the word "thyroxine".
Even when people realise that Thyroid BP used to be available, it takes some effort to find out when it disappeared, why, and the experiences of anyone who had ever taken it. (Even second or third hand as it was a long time ago now - around forty years - that it disappeared.)
Possibly ironically, until the past ten or so years, a large proportion of the few mentions of desiccated thyroid in the medical literature were pointed criticisms of it, and of anyone who might prescribe it. So those medics, largely endocrinologists, ranting against it, helped to raise its profile in print.
At the same time, inveighing against something but not having a good case, can have the opposite to the intended effect. The lack of any trial to demonstrate the superiority of levothyroxine when it was launched and came to dominate has been more and more highlighted. The allegations of inconsistency of desiccated thyroid against a background of levothyroxine issues has not helped their case.
Access to PubMed, to product documentation, to "numbers of prescriptions" data, to guideline documents, to prescribing. guides and formularies, all makes a huge difference.
At the same time, we need to realise the profound impact of genuine communication between patients, endocrinologists and scientists. I'm sure much is not welcomed by the medical establishment.
I've long suspected that the attitude to hypothyroidism has been what has been said all too often,. the little white pill sorts it all out. But this communication is starting to force appreciation that all is very far from happy in this area. The "all my other patients are fine" attitude still exists but simply must crumble. However, changing from something that takes one blood test and five minutes resulting in one prescription to a complex disorder which might require multiple tests and appointments and many many adjustments to medication, that changes an awful lot of things.
Also, that medics across many areas of medicine are starting to wake up to the profound impact of thyroid disorders. Including psychiatrists, heart and circulation, musculo-skeletal, bone, skin, and many other specialists.
The cost of levothyroxine in the USA has long been madness.
Synthroid has greater PR and marketing costs than any other (I'm sure). So they have to charge more to cover those costs. Yet its excipients are close to a list of the more questionable substances used in levothyroxine formulations:
acacia - widely suspected of having the potential to cause allergic reactions in some
confectioner's sugar (contains corn starch) - corn has become more and more often identified as having the potential to cause allergic reactions in some
lactose monohydrate - having the potential to cause reactions, though possibly not often true allergic reactions, in some. (I have some pet theories as to why lactose might be specifically inappropriate in levothyroxine products.)
magnesium stearate - despite much criticism, I suspect it could be fine for many. This is extremely widely used and difficult to avoid.
povidone -questionable in that it might inhibit full absorption of the levothyroxine.
talc - which has had increasing questions resulting in widespread withdrawal as an ingredient across personal care products and medicines. (Johnson & Johnson to replace talc-based powder with cornstarch - bbc.co.uk/news/business-625... )
And yet they charge so much that they have to advertise coupon programs, etc., to make it available to patients who can;t afford it! (Yes - I know such things are common in the USA.) And use their huge profits to fund further marketing down the road of "Nobody got sacked for prescribing Synthroid." (Based on the old aphorism about IBM - not literally true.)
I am sure I have seen more members report benefits switching from Synthroid than switching to Synthroid.
The most expensive levothyroxine tablet in the UK is £1.77 (USD 2.26) for 28 Aristo/Vencamil tablets. With most less than a pound.
Thank you for this, it’s very interesting to find out how thyroid treatments have evolved over the years. It’s also interesting to find out about the excipients and their side effects. I personally detest the substitution of cornflour for talc and pleased to see Johnson & Johnson will continue the sale of baby talcum powder in the UK. The cornflour feels gritty like sand and it’s horrid!
If there is any reality to the possibility of cancer from talcum powder, I'd not want it! Especially for use on babies.
But getting to the truth in such areas can be very difficulty. And, other than as an excipient in thyroid medicines, it is getting well off-topic here!
What you say about other medical specialisations waking up to Thyroid issues is very pertinant to me and many others ....Psych...cardiovascular ...bone doctors etc . Also ref East West differences in thyroid prescriptions in US : I was qondering of it had anything to do with climate in California vs Newyork area? The former is warmer , and in my experience Hypo feels much worse when cold weather.Ive already mentioned before that my medical neighbour went on research in British antarctic survey many years ago and found that tsh( for those lucky people who have efficiently working tsh) goes up in the cold thereby demanding more t4 from a working gland . So maybe those who have Hashi or similar compromised thyroid gland are feeling more ill and seeing doctors more in New York / New England area where winters are longer ...???
Very interesting, 🤔 I'm most interested in the bit about lactose monohydrate and corn starch causing reactions, I myself have never got on with any thyroid medication from T4, to T3 in all forms started on it in 2019, I have stomach and bowle issues (colitis and lactose intolerant) I posted yesterday to batty1 about my journey.
I just can't stomach the stuff, I have bad cramps, very runny stools with bad inflammation in both large and small intestines, my life consists of taking my thyroid medication waiting for more than the required hour, have breakfast then just wait for the marathon run to the toilet 😣yesterday I was on 4 times😣 I couldn't stomach any food at tea time 😢
Gp is not interested, I had the colonoscopy on June 2nd and I got the all clear, but gp as not bother contacting me, she did say it was probably best if I go back to see the endo, so far no appointment as been done🤷♀️ I really don't know what she thinks is going to happen because the bowle/stomach issues still remain.
I'm a 100% sure it's the thyroid medication as I've come off them and all effects have gone.. Go back on and they come back, so it doesn't take a brain surgeon to work it out.
I've never been offered NDT and my surgery are just sticking to the same regime hoping to get a different out come😠
Honestly I was chuckling at the posts about the US getting a bit better at despensing T3 ect, because my small town may as well be on a praire in no man's land, it's like a one horse town, our GPS are in the dark ages🤷♀️ I've tried educating them on things I've learned on here and read about thyroid conditions but it's like talking to that old doctor that's set in his/her ways.. "HOW DARE YOU TELL ME MY JOB" attitude.. with one asking me to leave the appointment 😠.
Is it a doctors /specialist job these days to just let you suffer?
Not to listen to the patient or go out of the nhs ridged regime?
I'm honestly sick of the treatment I'm receiving in regards to my thyroid medication 😠
Again it's back to endless phone calls to the surgery in the hope I can get an appointment with the gp who referred me for the colonoscopy 🤞 better get my horse saddled up😂🐴
Good points. I agree the biggest influence has been the internet. The use of talc and povidone was enough to turn me off of Synthroid. Generic no name Levothyroxine usually cost $9 USD for a three month supply and this is without health insurance. I like the generics better because I end up with higher FT4 levels. The issue with the generics is that it's difficult to get the same generic for an extended time. One of the biggest coupon discount company in the US is GoodRx. I can get 210 quantity of the 5mcg Liothyronine for around $57 with their coupons. The 25mcg and 50mcg are much cheaper, which I understand is the same in the UK. I get health insurance through my employer for $40 a month so I pay around $34 a month for Pfizer's Levoxyl. There are a few other name brands(Unithroid) that cost less but so far no adverse reactions on Levoxyl and they're easy to split by hand. Tirosint has their own discount program. It's something like $0-$50 per month depending on if you get the ampules or gel Levo. The ampules are cheaper. Interestingly my health insurance company will cover NP Thyroid down to around $16 per month but won't cover Synthroid. I get the feeling insurance companies dislike Synthroid makers for their ridiculous prices. The price for NP Thyroid monthly is lower than all the name brand Levos, except for Unithroid. NP Thyroid has stated on their website that they use word of mouth advertising. Clearly it keeps their costs lower. I'd like to give the gel Tirosint a try once again but that stuff is quite potent, highly absorbable. My biggest complaint with Levo is that they don't make smaller doses like 5-6mcg to add to larger doses. This would be convenient if you need to reduce or increase depending on the seasons. I don't do well alternating a smaller and larger dose.
It's frustrating we don't have 10 and 20mcg Lio here in the US. Doesn't make sense to me. I've thought about going to a mom and pop type pharmacy to see if they can order the same generic. From what I gather your pharmacists(chemists?) have a lot of authority and say so when it comes to your prescriptions. Big name pharmacies in the US have little say so in what gets ordered and neither do we but this may be different for smaller ones. I've learned a lot from this forum about how things work in the UK! Also, I noticed in the UK that you don't have 88mcg and 112mcg doses?
There was a time (pre-1960s) when the only treatment for hypothyroidism was Natural Dessicated Thyroid (NDT), first discovered in the 1890s but apparently, in the 1960s a 'bad' batch of NDT led to the creation of Thyroxine (how convenient for Big Pharma) and NDT was banned.
Most definitely a bad batch did not lead to the creation of levothyroxine. Though such things might have contributed to the move towards levothyroxine.
Levothyroxine was available in 1926!
The first Eltroxin (branding) was in 1951. Similar dates in the USA.
Have a look at the history documents available on my blog, if you are interested:
I'm on the eastern side of the U.S. My doctor is open minded "so far" with my choice. Thankfully, the cheaper Levothyroxine works for me. A 3 month supply of Levo runs me $19 while a 3 month supply of NDT would run me $120. I asked if he would let me try NDT and he said yes.
It depends more on what type of Doctor that you see. Endocrinologists are just as difficult to deal with in the US as they are in the UK. They usually only test TSH and FT4. My old GP tested all thyroid hormones but never once did any endo test my FT3. physicians here that focus more on balancing hormones and recognize the importance of FT3 levels are more likely to not place importance on the TSH as they would a combination of symptoms.
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Just clear up some miscommunication and we're all good.
thyroid hormones and beta blockers 
How much thyroid hormone do you take? 
NDT for impaired sensitivity to thyroid hormone?
