Mayo Clinic just published a paper on Overtreating an under active thyroid you may have seen. One of their researchers, Dr. Juan Brito Campana a Mayo Clinic Endocrinologist did a Podcast for patients. They will no doubt influence thyroid treatment in the states. Their view is of course conservative.
Mayo Clinic Q&A podcast: Overtreating an underactive thyroid
August 6, 2021
The thyroid gland creates and produces hormones that play a role in many systems throughout the body. When your thyroid makes too much or too little of these important hormones, it’s called thyroid disease.
And thyroid disease is common.
"We know that about 10% of people have some degree of thyroid dysfunction," says Dr. Juan Brito Campana, a Mayo Clinic endocrinologist.
There are several different types of thyroid disease, including hyperthyroidism, or overactive thyroid; hypothyroidism or underactive thyroid; and Hashimoto’s disease, where the immune system attacks the thyroid gland. Hypothyroidism is the most common thyroid disease. Treatment for hypothyroidism involves daily use of levothyroxine, a synthetic thyroid hormone that restores adequate hormone levels.
Levothyroxine is one of the most common prescription drugs in the U.S., but a new study by Mayo Clinic researchers suggests it is significantly overused in people with mild hypothyroidism or no apparent thyroid dysfunction. These results were published in JAMA Internal Medicine.
On the Mayo Clinic Q&A podcast, Dr. Brito Campana discusses diagnosis and treatment for thyroid disease, and what the research on the overuse of levothyroxine means for patients.
Helvella. Thank you for the report.I just want to know either one needs thyroid meds or not. I'm very concerned that patient that are in real need of thyroid meds are pushed to the sidelines because the labs according to the Dr looks fine and ignoring the cries of the patients symptoms.
I am one of those who never had ridiculously low FT4, nor especially high TSH. But the collection of symptoms was growing - some with significant impact on me.
This approach of trying to avoid treating, which seems predicated on an idea with little or no sound science, would be devastating for those like me.
Maybe something other than levothyroxine is possible? (For example, something that addressed why my thyroid is not producing enough thyroid hormone.) But they don't exactly offer much help for us.
Helvella your Spot On. I never understood this mentality of the medical establishment. Patients know Best how they feel . Patients need to be heard trusted and treated accordingly. My own sister who needs thyroid meds with all her symptoms is suffering because the Dr said he is
aware of the family history with thyroid issues and he sees that she is borderline lab results . But he still would not give her thyroid meds.
This does not make any sense.
How many people must suffer because of Dr's negligence???
And evidence is mounting that under treatment is downright bad for us. Why are they always bleating on about overtreated patients? Given the way they use, highly inappropriately, only TSH for treating it’s hard for anyone to get over treatment as the freeT3 which really denotes whether a patient is over treated, is totally ignored and often TSH has to be low or suppressed to get it in the top third of the range. Yet they claim that is an overdose! It’s a darn set up - we determine what you get and we ensure it is inadequate by using a stupid measure but we can then claim people are over treated when the converse is true - these people would argue black is white. I’m totally fed up of it. After decades of being told I didn’t have a thyroid problem when I darn well did and I told them I was suspicious I did have a problem, that it ran in the family and blah blah blah. Not one bothered to run a thyroid panel they just patronised me. Imagine being left to fester for that long and what that did to my health. I was virtually dead by the time someone actually listened and did something helpful about my terrible symptoms all they can go on about is a minuscule number of people getting a few piddly micro grams over of Levothyroxine which is unlikely to have any substantial effect upon their health. A close relative had been on a suppressive dose for decades with no ill effects whatsoever. When will these people start to look at the real issues affecting those with thyroid disorders namely poor diagnosis and poor treatment with just one thyroid hormone. They seem oblivious to reality for many of us.
This doctor says to his credit at the tail end of the podcast presentation that doctors must continue working with their patients to find the cause of their symptoms. He is imploring doctors not to ignore patient symptoms.
Thank you for pointing it out to me. I'm frustrated with Dr's that are closed mined ignorant or just don't take patients care seriously the way it ought to be. Have Dr's not taken the oath prior to practicing ???
Unfortunately, doctors make guesses about what is wrong with patients and often get those guesses wrong. I think there are very few skilled diagnosticians amongst doctors. (Where's Dr House when you need him.) And then they either don't write medical records or they obfuscate or they lie or they write something unreadable. I've seen my own GP in years gone by literally scribble on a piece of paper. When I bought a complete copy of my medical records those scribbles formed part of the record. Nobody could have read them - including my GP.
In my experience doctors don't work with me. They just tell me what they are prepared to do (usually prescribe anti-depressants or insult my sanity) and nothing will budge them towards doing something more practical that might actually help.
Yes. Yes. Yes. That's exactly what I'm talking about. They will be happy to fill up the patients medicine chest with all sorts of medications. Instead of giving the thyroid meds that are so crucial for their total well-being. I'm convinced they want to keep patients sick and to keep them coming back for more meds.
That is very tragic. I'm so so sorry you had to experience and endure such horrific negligent care. I hope and pray your getting the care you need and deserve for your optimal well-being .There has to be a change in the way Dr's are practicing and giving the right care for patients .
I visited the GP a couple of years ago and she asked numerous questions, which I answered honestly and best I could. Now you know when you just know they are thinking "bonkers, blah blah, blah - added a couple of Really's??" I left to collect my Levo prescription, feeling very sad, let down. When I collected the prescription it was for anti depressants, NOT Levo. The chemist called her, she apologised...waffled on about clicking the wrong button'ha ha ha'.......What can you do eh? Wrong on so many counts.
That is appalling! And so dishonest! And lack of Levo for a hypothyroid patient who hadn't realised what the doctor had done would really mess with their heads.
I know....good job I have a great relationship with the Chemist, and had been on Levo for many years. Freudian slip on her part..She asked me about my diet too. I said I cook from scratch, rarely have a t/a , lucky enough yo love fruit and vegetables. She clearly didn't believe me, looked sceptical then said "Do you know how many calories there are in a McDonald's , how many in a Chinese buffet?" Nope, no I don't. Not seen her again. I don't think she likes me! 😊
In the UK experience, that usually means that despite a constellation of signs and symptoms indicating Thyroid Replacement Therapy, doctors treat every sign or symptom separately.so a laxative for constipation
anti depressants for fatigue
diet pills to lose weight
propanolol to lower blood pressure and regulate the heart
Do you know if the lipids clinics are of any use. I was prescribed statins after a heart attack in 2012. A few months after the heart attack I realised that I'd been prescribed the maximum dose.......so I insisted on cutting it in half, with some mumbled objections from my GP. My lipids results are not awful, but they're not particularly good either. My thyroid results are pretty good on Levo at the moment.
I actually think the lipids clinic I attended was pretty good. I liked the consultant and I thought at the time that they ran a pretty first class service.
But I ran into problems with them. The statins they prescribed made me jittery and spiked my heart rate. When I tried to tell them that I thought there was something else wrong with me that was making my body somehow “allergic” to statins, they said that was unlikely and that it was more likely I was having a heart attack. They wanted me to go immediately to A&E. I didn’t as I was so sure that it was not my heart! (I was very fit at the time and tracked my heart rate, HRV etc off my iPhone so it would have been very unlikely.)
I stopped taking statins and my side effects immediately calmed down. I had not been diagnosed as hypothyroid at that time, and with the benefit of what I know now, my thyroid problem was almost certainly contributing to my cholesterol issue and indeed my inability to tolerate statins. The lipids clinic had tested my TSH after my GP referred me. It was over 3 and therefore judged normal. I really wish they had done FT3 and FT4 at that point as I’m sure that would have shown that thyroid not lipids were the main problem. Or, indeed, that they should have treated the thyroid issue first, which is, I believe, what the NICE guidelines say anyway. As it is, I now won’t touch statins again if I can help it.
I’m not sure I’m answering your question. I think the reality is that most medical specialists these days see things from the perspective of their own blinkers. You could ask your GP for a referral by all means however it’s possible that what you’re already doing is already what’s best for you 🤷🏻♀️
how important it is to find the right doctor. After 4 years of feeling ill, and regular doctors saying there was nothing wrong, I saw a locum who diagnosed under active thyroid within a few days. More recently I've had to walk out on a GP who insisted on reducing my medication because I had suppressed TSH, without testing my T3 (which is normal), and had to ask a nurse doing blood tests, to add T3 in order to get a proper picture. I have had to be very insistent.
Which is a summary of "The new advice was published as part of the BMJ's rapid recommendations initiative, developed to provide "rapid and trustworthy guidance based on new evidence to help doctors make better decisions with their patients," according to a BMJ press statement."
It advocates:-
"In a recommendation that could "substantially alter prescribing trends," according to its authors, an international panel of experts concludes that patients with subclinical hypothyroidism should not be routinely offered thyroid hormone replacement therapy.
This is because overwhelming evidence shows no benefit in quality of life or symptoms, which are minimal in many patients and not present at all in one third of individuals"
Well, the comment on no benefit to QOL is no different from those with overt hypothyroidism treated with Levo, so how is this relevant?
"There are exceptions. The recommendation specifically does not apply to women trying to become pregnant and those with TSH levels above 20 mlU/L, and it "may not" apply to patients with severe symptoms or young adults aged 30 years and younger, the panel notes."
I was dx with TSH 8.6 & T4 11 (10-21). I'd started losing consciousness for nano-seconds here and there, which is what made me see the GP. I only landed on the floor with a thud once. Would this guy think this was serious enough to treat, or would it have involved expensive head-scans etc.....
Curiously I knew an American who moved to uk & I can remember her telling me she had run out of levothyroxine and hadn’t sort to get more while living here. She was running every morning & holding down a job… all the things I dream about doingI couldn’t understand how she could function with out it.
it's a shame they are not so concerned about 'over prescribing of antidepressants'. There was no chance of them 'over treating' my 'sub-clinical' hypo .. since no body thought to even test my TSH for 4 years after i'd had a baby.. despite post partum hypo being (presumably) a well known 'thing'.
... but if they hadn't treated it when they did (even though TSH was only 6.8) i'd have been on the dole since 2003 instead of paying tax for the last 18 yrs .. and my 2 kids would have been living on pizza and not having anybody awake after 4pm to make sure they were doing their homework. They both pay lots of tax now too cos, they got good jobs... talk about 'a false economy' !
if someone is not listened to , doesn't have their symptoms taken seriously ,or is not given the appropriate treatment by a GP ....it's just as damaging to that person whoever they are.
Of course some people get treated better than others , of course it's 'not fair' ,but that's life, and there's a million different reasons why it happens .
I know men who've got fobbed off for months as "making a fuss about nothing .. try some antidepressants " ,only to discover that they had 2 cracked vertibrae ...
I also know women with nothing urgently wrong with them who are extremely effective at getting cowering consultants in the NHS to offer anything they demand within days.
You will see loads of women on here who've been offered antidepressants and not so many men ... that 's because there's not many men on here .... because not many men get thyroid disease.
What does my comment about overprescribing antidepressants have to do with 'it's not fair ~ they're always treating boys better than girls " ? ..... i stopped caring about that issue when i was about 12 yrs old, and got on with doing what i wanted ie. having a motorbike and not letting boys on the back.
I know several men who've been put on all sorts of antidepressant's long term ,with (in my opinion) really negative affects on their lives.... ie. left to self medicate with booze rather than getting any real help.
"they're always treating boys better than girls " ? ..... i stopped caring about that issue when i was about 12 yrs old" I didn't know it was an issue when I was 12, I think I was a bit naive. 🤣
Hi Helvella and everyone,I have relatives who live in the states - they live in an area outside of Las Vegas. Also relatives in California and Canada. I don’t know about anyone else on here - but I’ve always been active walking etc.
In the states and other areas of the States - they get into cars to go everywhere. So, were we might walk to our doctors surgery - in the States its a drive away! I have been with my cousins and they sit around a lot watching the TV a lot.
So, in thinking about this way of life and the elderly in the states, (I’m 68 and my cousins are similar ages) maybe there should be different guidelines for whichever country that you live in. Less activity probably means less hormone is needed for some? I mean I don't know I’m not an expert and can only talk from my own experience.
Towards the end of last year and earlier this year they tried to say that I was over medicated - taking T3 only. I more suspect that this was because 30 mcg’s is an expensive prescription! Needless to say they swapped my T3 to 10 mcg’s from 30 mcg’s and gave me 50 mcg’s of Levothyroxine to top up the shortfall of the T3! I was extremely ill and went straight back into all of Hypo symptoms again. If you are well - don't let them mess you around - I am now back on my normal meds T3 only and feel so much better again - but it took months to come back from this 3 month trial!
I have to agree with Mistydeb01 and Humanbean, I too was left for years so called subclinical with varying TSH levels from 4.9, 6.79, etc and just left untreated when they knew I had Hashi’s!
Finally, and in desperation, with my legs going from under me while walking,
I saw a different GP at my practice, she ran another TSH test (none done for over 18 months despite me continually asking) and it resulted in TSH of 38!
It’s wicked that people have to suffer in this way - maybe if some GP’s actually suffered with thyroid disease - they’d understand more??
It’s only thanks to everyone on here - that I have come back to good health.
Thank you to everyone who’s helped me on this very supportive group.
I live in the US and I must drive 2 hours to see my Endo and 20 minutes to see my GP so I guess I must be a lazy slob because I can’t walk the 2 hours or the 20 minutes and as far as your cousins sitting around watching TV we are still in the middle of a pandemic and not a ton of things to do or maybe thats how they have been raised to sit around….. Unbelievable!
Sorry Batty1, If I offended you. I wasn’t intending to, I was merely stating that you have a different way of life - because of the way your infrastructure has been put in. Also, the temperatures in places like Las Vegas would prevent you from walking unless in the winter months! Of course I don’t expect you to walk for two hours and 20 minutes. I think if some people want to take offence, they will regardless of any good intentions. And yes, my cousins used to be very active in their younger years one was a dancer with New York Ballet and the others were really good swimmers - but my cousins have just got into bad habits unfortunately.
I wasn’t calling anyone lazy - just saying that depending on your way of life and maybe your state of health this will impact on your overall ability to be active.
Not offended as much as just tired of people bad mouthing Americans and calling our life styles lazy because we don’t have doctors offices or grocery stores located inside our neighborhoods that we can walk to …. Actually I live outside of Washington DC and the traffic here is insane it takes almost 15 mins to just leave my neighborhood to go to a grocery store that I can actually throw a rock at but because I drive to it doesn’t make me lazy makes me smart otherwise I would be playing a real life game of frogger.
I've never understood how come so much of America seem to be built like that ie. , "no pavements included".. it's not as though there's not lots of space ? I once read a book by Bill Bryson (i think) . and he decide to try and walk somewhere in stead of driving.. and it was virtually impossible, and like you say highly dangerous.
We actually do have lots of sidewalks and bike paths accessible to only certain areas … I live right off of water our homes go for 500k and up and you would think with this type of money we would have better walking areas … problem with my area its HOT and everyone wants to buy homes here which sell in 1 day some sell as soon as they hit the market and builders see this and guess what they buy all the empty land and build more homes .. eventually you really run out of space . Before I got sick with psoriatic arthritis nightmare I would walk my area 10 miles beautiful and peaceful and last month my hubby drove me past this walking area thats now filled with townhouses 1/2 million dollars for a stupid townhouse but they sell and quick .. its sad that when I do get better I won’t have a place to walk through anymore.
Houses and Offices here in the UK are being built without anywhere near enough parking spaces. A lot of cyclists in London are really very dangerous with the speeds that they go. Its a no-win situation.
Im one of those patients that had normal thyroid test for years but suffered with severe anxiety and laundry list of other issues that were chalked up to being a worry wart … only to eventually discover I had thyroid cancer…. I often wonder if my doctor would have taken and active interest in my issues maybe just maybe I could have receive treatment for thyroid issues and cancer might have never been and issue. Annoying!
A few things that I think about whenever this subject comes up :
1) By not treating patients for Subclinical Hypothyroidism (SCH) such patients will be far more profitable to doctors in a for-profit system like the USA.
2) Research that shows that SCH shouldn't be treated is usually very poor.
3) I believe that the almost complete refusal to use both Free T4 and Free T3 testing in treatment and research means that hypothyroidism treatment will not progress in the next 20 years (by which time I'll be dead).
4) I wonder if these arguments between doctors/researchers and patients would be so bad if the patients were all or mostly male. I simply don't believe they would be.
5) There must be some male doctors who are hypothyroid. Do they treat themselves? Where are they and why aren't they helping us?
6) Without testing Free T3 and Free T4 central hypothyroidism has become an almost undiagnosable condition.
7) Modern medicine in the UK can be described as "Don't ask, don't look, don't test, and don't tell the patient anything that you suspect because then you'll have to treat them."
Mmm have to agree about the dr having the problem it would be sorted properly. I recently had neck scan (US & MRI). When I spoke to ENT dr I asked about my Thyroglossal duct cyst, he said it’s not that big not to worry about it. So I said to him. “If you had my cyst, would you be happy to have a wait and see’, mmm he said, I’ll put you down for an appt in 12 months. Low and behold I’ve got another neck scan this week. I have a really scrawny neck and what is small to them seems huge in my neck and you can see it when I swallow. We’ll see what happens.
My BS meter is on high alert here - Reading through the transcript,
"It's unclear the reason why, but what we have seen is that what is normal at a younger age, it starts becoming the number that is considered high at younger ages is actually considered more normal in older ages. And we know that these kind of different thresholds in your system changes in a way that might be protective because you might not need the energy that you needed at different age groups to do different muscle kind of driven activities you might do in other kinds of activities. So, it might be that the energy distribution and the way that we consume energy is different at different ages, different age groups. So, the older we get, the thyroid might not need to work as hard."
This is coming on the heels of some studies showing that older people may have lowering TSH along with LOWER free T3 and LOWER free T4, possibly indicating that as we age there may be pituitary changes which affect TSH. DUH. Anyone with an older horse who has dealt with PPID (Cushing's) can tell you that with age comes pituitary changes.
To say that we don't need as much energy as we age is to go along with the idea that old people shoukld be dumped in the dust bin. Maybe if they were given adequate thyroid therapy they would have the energy to live strong and well as they age.
Thankfully we have other endocrinoliogists in the US who are much more supportive of treating us appropriately. Doctors like this just infuriate me - he'll sing a different tune when he hits seventy.
Also - looked up this doc's (Brita) list of publications - he sounds so anti-treatment as if he's getting paid for saving Mayo $$ by not treating. Scary.
Oh, that explains why he looked so unconvincing when he was advising other Dr's to keep looking for other explanations. More tests = More $$$$$. Slimy B******d
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