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DON'T Let An Endocrinologist Treat Your Thyroid... - Thyroid UK
DON'T Let An Endocrinologist Treat Your Thyroid - the American Experience
Written by
Charlie-Farley
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Buddy195Administrator
Thanks for sharing the link Charlie-Farley👍
So many of us have seen practitioners like those described by Dr Childs, but let’s not forget that there are some enlightened endocrinologists out there….
It’s definitely worth checking the TUK list if you are considering booking an endo appointment, in addition to creating a post asking forum members for recommendations/ feedback (although replies must be via private message, as per forum guidelines) 🦋
I'm so glad that you added that members should ask for recommendations/feedback on the forum Buddy and not just take a name from the TUK list as I and others have done and wasted enormous amounts of money. I've only ever seen two endos in the whole of my life (both in the past 4 years), one NHS and one private and sadly neither would get a recommendation from me.
The NHS endo didn't think it mattered what thyroid disease I might have and wouldn't even check for antibodies so I paid out privately to get both sorts done to try and ascertain what thyroid disease I actually had. Since then I've been asked several times to come off of all thyroid medication which I've refused to do.
The private one practically shouted at me for never having being under an endo before (perhaps that why I kept so well for so many years). He also demanded that I reduce my medication immediately because my TSH was 0.01 - it's been this on every NHS test I've ever done during the past 30 years no matter what time of day I've given blood am or pm. Even though I've now halved my thyroid medication my TSH stays firmly at 0.01.
I would also like to add pharmacists to the list of people who aren't experts in thyroidism however well qualified they are in drugs. As far as I am concerned the very knowledgeable people on this forum are the ones whose praises I shall sing for ever more for all their support, advice and so much more!
I agree with you 100% regarding your comment about pharmacists. I went to pick up my meds a couple weeks ago and was asked by the pharmacist why I was taking NDT and not Levo. I explained to her that I tried Levo before, but had a conversion issue and that Cytomel did not agree with me. She insisted that Levo was the best for hypothyroidism and that I should switch back to Levo. I kept emphasizing that I had a poor converter and she had not a clue as to what I was saying. She even mentioned that conversion had nothing to do with taking levothyroxine and that it’s the only one that works for hypothyroidism. I do t trust endos to treat my hypothyroidism ( I have no thyroid), so now I’ve added pharmacists to the list. All I have to rely on is this priceless forum! Thank God for the wonderful, knowledgeable admins and members. I hope this forum will be active for the remainder of my life. I read most of the posts every night, to learn from everyone’s experiences and to gain valuable advice. It’s sad that the very doctors who are trained to take care of us cannot keep us healthy.😢
Yes Rosebud, I too have been quizzed about why I am taking NDT and perhaps I should now try going back onto Levothyroxine which is meant to be the panacea for all thyroid problems. Very simply an Integrated Dr I once had tried to get me onto Levo when he was threatened with closure for prescribing NDT and I was very unwell for a few months until I took matters into my own hands and started started self-medicating (not something I did lightly).
As for the very doctors who are trained to take care of us - endos, GP's, and Pharmacists in the main are not getting suitable training in thyrodism and herein lies the problem.
Good for you to be able to take control of your thyroid health. I can imagine it wasn’t an easy decision for you. I get my NDT prescription without a fuss, but feel scared/unsure when I have to take matters into my own hands to do tiny adjustments once in a while. So scared of making mistakes that could make me unwell for weeks.
Yes, I agree 100% that more training is needed. It sometimes feel as though we’re living in the 19th century. Why can’t they wake up and realize that it’s time for an overhaul of the entire medical system. We’re no longer living in the “dark” ages. AI will soon be replacing them.
Let’s continue to fight for our health. “THANK YOU THYROID UK” and all the supporters. We appreciate you!!
Poor training based on poor scientific understanding- the good guys are pushed to the margins and the idiots hold the centre ground.
So sorry for late reply Charlie - internet has been down. Thank you for posting the above which I hadn't seen before and which admittedly took me by surprise when I saw Dr Westin Childs actually advocating that we shouldn't go to see endocrinologists - the mind boggles! Wow, it would seem that nothing has improved over the years in some respects as we are all basically saying the same things - how sad.
Your pharmacist's should learn to stay in her lane and only worry about drug interactions and not tell you why one drug is more superior to another…. I would told her this .
When I tried to argue my point, the pharmacist accused me of being belligerent and threatened to refuse to give me my NDT. I have now transferred my account from that pharmacy. A bit of inconvenience to me, but I couldn’t deal with them anymore. They’re all so power hungry and make us feel like we’re less of a human being. Only because we’re vulnerable. I’m struggling to balance my thyroid hormones to be able to survive each day. I’m sick of being sick and don’t always have the energy to stand up to their ignorance. This thyroid disease has taken a toll on me, especially when those people that are close to me don’t even understand the undoing struggle that I face from day to. It is indeed an invisible, lonely disease. Very sad!!!
I don’t understand why a pharmacist has so much control over their customers and why no one files complaints… pharmacist is to make sure you have no interactions between prescriptions that the doctors order and nothing more.
we’ll said!!
Sorry Rosebud - internet has been down. Absolutely agree with everything that you've just said and also Batty1 - as it's none of their business what drugs we are on. My particular gripe was with our surgery pharmacists who tried to take over from the Drs 4 years ago. The first one telephoned me out of the blue to say that I should decrease my NDT as that obviously was a contributory factor in my having osteoporosis (I asked her to supply the evidence) which she couldn't of course.
The next one a few weeks later told me I should come off the A/D's I had been on for years for anxiety and that it would only take a couple of weeks per tablet - what a joke. It took me near 2 months per tablet as I had such bad withdrawal symptoms and then after dispensing with the last my body went haywire and has seen me having no end of problems since. Obviously they are now trying to do more work for the GP's but I for one think this is totally wrong and I won't ever let one of them tell me what to do again. Keep your chin up - at least we have a wonderful forum where we can let off steam and know that people will care and understand! XX
Degor, with that level of TSH the doctors reckon your hyperthyroid right, or will your TSH not budge due to T3 conversion issues ?
The first guys sounds horrendous. Second one not great either.
I am certainly not hyperthyroid JiggyGillow - I was years ago when my thyroid went badly overactive after a virus which culminated in a partial thyroidectomy. I did read somewhere that patients who have been overactive may never have a "normal" TSH ever again and it also has been said on the forum that for some people their TSH levels may never change. Again, it has been said time and time again that patients should not be treated according to their TSH levels and this is only one example.
They have ASSUMED (not tested) that the behaviour of TSH in people with hyperthyroidism - significantly over range levels of FT3, FT4 to meaning the same in people with hypothyroidism ie if TSH under range or suppressed the FT3 and FT4 will be over range , but they never test to confirm. It frequently isn’t the case. I am one of those who has a very low TSH but my thyroid hormone levels are still very much in range.
I giggle at their lack of logic and understanding- a result of the abandonment of Scientific rigour. Medicine needs more science.
I have not watched this video. I am however very familiar with Dr. Westin Childs. I found him before I found the Forum. He does give good info and advice but I have an inherent resistance to people selling their ‘own’ supplements online. However Childs has been around for a good while and I definitely think he is one of the most trustworthy sources of info.
I agree with you very much Delgor and Buddy195 . It’s like everything Thyroid, Check, check again and again, any endocrinologist, even from the ThyroidUK list. Get PMs from others on the Forum before spending (a lot) of money. My example is that I was convinced I needed T3. The Forum advice is I need T3. I found someone willing to prescribe T3 but there was no ‘aftercare’ and the endo got rid of me fast when I hit a problem. I guess if you are very confident you need T3 it’s worth a try. Just don’t expect aftercare. Private endos come from the same school of endos with the same educational framework - totally lacking! Basically A&E is your back up plan, if things go badly pear shaped.
Ironically I found out at my appointment that my private endo of choice had trained under a very eminent and despised endo, often mentioned on the forum. So perhaps I could have worked out that whilst this person was very happy to prescribe T3, they did not know anything much about it, probably because of the complete absence of T3 from the education, taken under said eminent endo. A ‘deeper dive’ (I watch too many detective programmes on TV) into their education and who supplied it might be in order choosing an endo!
Thyroid UK, quite rightly, say it’s not a list of recommended endos as such, it’s who people have used and they got whatever it was they wanted - probably most people want T3.
As has often been said on the Forum, if we were treated properly in the first place by the NHS, we would not be driven to fill up the coffers of private medicine. It’s a complete anathema to have to do this in the UK.
I happen to know who Delgor saw privately and I know a lot now about the background to the one I saw. I have seen both endos on video and they can actually present themselves quite differently from the reality.
I am telling you this so you do your homework not to frighten you. That you go into your appointment with your eyes wide open. We are far too trusting.
Check, check and check again so you don’t fall foul of endos who seem to have a completely different agenda from the patient! Please.
Well said 😊👍
The only reason I have anything to do with an endocrinologist is that I need them once a year to sign me off for another 12 months of prescriptions for T3. Other than that, they are utterly useless! I certainly would not follow any instructions about reducing dosages of my thyroid medication as it took me long enough to get to the stage where I’m feeling ok and my TSH has been undetectable for years!
I am so lucky to see an endo who is wise and when I read said Dr Peatfield’s book he said that is gold-standard. Am on NDT now and things are progressing well.. not ‘there’ yet..
My experience with the ‘thyroid expert’ at my local doctor surgery was horrendous… gas lit. He got angry when my TSH was normal .. although it turns out I wasn’t converting T4 to T3 so was in hell of a state. Then I found a lovely doctor there who tried to help.. but was completely foxed by it all so I found the endo myself - with all the brilliant advice and fabulous people on this forum = a godsend. I gave the lovely doctor a copy of the Dr Peatfield book and she was very receptive so hopefully can change one mind…
It seems so wrong we all have such a tough time.. something has to change…
Amen to that.
Reading some of the comments I wonder if some endos actually hate their patients.
This dr looks quite young , so maybe we should all be campaigning hard towards student endos and gps before they become brainwashed by the current ones.
The worst endo I've ever seen was a young one. They are generally worse - come out of uni brainwashed by big pharma. Wanted to send me for a blood test at noon, when I'd taken my tablet and eaten breakfast! When I declinedfor that reason, she said it wouldn't matter and the tsh was the only thing that counted anyways! I didn't go back, needless to say...
Thanks for the video …. However I haven’t found any joy with PCP, Endocrinologists or Functional Medicine Doctors when it comes to giving a darn about the way my thyroidectomy has destroyed my health and my current Endo only deals with thyroid cancer issues nothing else and guess what he still has a very narrow mind although he does test for everything except the FT3 it’s maddening .
Having had a thyrodectomy he doesn’t check T3 - it would be unbelievable if I hadn’t heard so much on this forum.
He checks T3 he won’t check FT3 … thats every endo I have seen … frustrating.
I’m actually baffled that they can’t connect the dots or is it their egos getting in the way - don’t answer that - I already know the answer.
The line about patient knowledge being seen as a hinderance struck a chord with me. In their heads they are Gods, and how dare you question them?
The fact that you cry all the way home is neither here not there. You have been told, now run along.
My body, my choice.
Interesting he would say in the video that your pcp is the best person to treat thyroid. That's all I got while in UK but sure didn't find one that knew anything about thyroid or wanted to know. If you tell them you're tired the first thing they offer is ssri (anti-depressants) drugs. Now those are dangerous, especially over the long term. Amazing how few docs know how to interpret test results. God help us all!
Ah well that is a big problem in the UK terrified to step outside the guidelines Even though if they read them carefully there is latitude to treat the patient. Baffles me…..
AGREE! The second-worst doc I ever had was an endo. And no endo was ever able to diagnose I had gluten intolerance that savaged my gut and launched Hashimoto's; I had to goto an ND to get diagnosed. I can only conclude that your average endo doesn't know what Environmental Medicine is.
This has good info for newbies to be aware of for sure, and a lot of these vloggers/bloggers have valuable insights to offer from their research, but too often wrap the good stuff in over generalizations / click bait titles that can be misleading and harmful. He qualifies his assertion in the course of the video (only watched a couple minutes) but the title pisses me off a bit!
I’ve been lucky to (without too much difficulty) find Endos here in the US that have been open to working collaboratively with me, and who aren’t scared of patients who have ideas and knowledge about their own care. Are they perfect, no, but I’ve found them helpful to get me most of what I need, thus far at least.
My PCPs/GPs, on the other hand, have been much more threatened by the idea of me driving my own care. Brought my previous PCP some research once and he literally threw it back at me like a toddler, telling me angrily that he doesn’t have time to read research articles. My current PCP, when I inadvertently disclosed details about my thyroid med trials (using words like “So I decreased my dose slightly..”) got a very concerned and disapproving look on her face and said to me, “Sounds like you’re making a lot of decisions. Can you give me the name and number of your Endo again?”, as if she was intended to have a stern talk with him about daring to let his patient have any power over her health (she never did, because that would have required time and effort). Wanted to tell her to f*** off, and am now looking for a new GP.
In the US at least, I think it’s hit or miss with any doctor or specialist. Some are better than others, and word of mouth/ reviews/ etc can to some degree help in locating the more evolved, patient-centered, patient-respecting ones. I certainly wouldn’t agree with the advice to not seek out an endo for treatment, quite the opposite.
Sadly, we have problems at every level in the UK and there are some good knowledgeable clinicians but they are the minority. Those who step too far out of line and solely focus on treating patients literally get hounded out by GMC. It is a very saddening situation.
My latest GP had a hissy fit because my TSH is below range but to even attempt to get it in range would require me to be grossly under medicated with an unacceptably low quality of life. Of course the bloods looking good are soooo important to them I doubt they would even notice. Getting patient's TSH in range is all they care about - first scientific principles it makes no sense to manage thyroid hormone replacement using a pituitary hormone. 🤔
So I refused a dose decrease (as it is not necessary) my thyroid hormones are within range (not that he would know as they don’t test) and I’m feeling fine. He wanted to send me to an Endocrinologist (so I would get a talking to). Told him I do not need a referral- I’m fine - and I am not going to let anyone make me ill when I know full well treatment protocols are flawed. I told him I’ve been fact checking, suggested he do the same. They spend/waste an inordinate amount of time and money chasing TSH and making people ill in the process.
Completely agree with all of that Charlie-Farley ! From your post and many others I’ve read on here it sounds as though the set up in the UK for thyroid treatment is notably different than in the US (where Westin-Childs in based).
It sounds like in the UK Endos tend to be more focused on TSH than GPs, and have more indisputable power over treatment decisions to boot, making it harder for patients to fight back on decisions with which they disagree. In the US, individuals rather easily have the choice to go to an Endo for hypothyroidism if we want to (sometimes need to request a referral from our GP to do so) and we can choose our GP as well as the Endo (or any other specialist)— typically within a pool of those that participate in the health insurance plan we have. I hate to make generalizations, but that’s typically how it works here.
Between the GP and Endo, which one is more likely to focus on TSH is a crapshoot, because neither is likely to be very educated on thyroid issues, but typically the Endo will be a bit more so and able to offer wider treatment options (T3, compounded, NDT, etc). It can take a lot of effort to find a good one, probably especially so in less urban areas, and definitely for some individuals a GP will be the better option.
I just think the title of Westin-Child’s video, which I assume has a high percentage US-based audience, is highly irresponsible and serves more to get him clicks than to educate his viewers.
[Edited to correct many, many typos 🙃]
it’s interesting you say that because it certainly resonates with the UK experience for many.
When you say
“It sounds like in the UK Endos tend to be more focused on TSH than GPs, and have more indisputable power over treatment decisions to boot, making it harder for patients to fight back on decisions with which they disagree. “
You have pretty much nailed it. It is not easy to get a say in your own health at GP level either though. Terrible situation.
Yes, very frustrating. Same here, if one doesn’t have a GOOD Endo/GP, forget it. We just seem to have a bit more choice in finding the good ones.
OTOH, from what I’ve gathered from this forum over the years, in the UK patients have the ability to legally self-source prescription meds (under certain circumstances?). We absolutely cannot do so under any circumstances; doctors have total control over that. (And, OF COURSE, we have no universal healthcare! )
HM. Dr Childs shares checking reverse T3 is a worthwhile, which is often cited as unnecessary on the forum.
Now I am more confused.
I would take anything thyroid vloggers/bloggers say with a grain of salt, HSD! Hope you’re well.
There are so many on Facebook now too it is a mine field.
not watching this as don’t need blanket condemnation scare stories and the idea that ALL endos don’t know what they’re talking about! Mine in the UK on the NHS is lovely thanks.
That’s interesting. I did watch it and even subscribed to his channel. Within minutes I thought about it and reached the same conclusion as you. Plus, it’s a not an easy compassion between US and UK health services.
I still believe as with most health professions in the UK, many simply won’t be up to the task at the hand. But, yes, there are some gems out there who are willing to work with you collaboratively. However, often times, this can take fostering a good relationship over years with the professional in some cases.
Same here! Mine is lovely.
please please we can’t discuss names here but could you let Thyroid UK admin know your endo via email. This could help others. 🤗
enquiries@thyroiduk.org
The private endo I saw is on the list and I currently attend Kingston Hospital who are great.
If you can feedback to the office via the email it continues to give the office up to date intel.
please please we can’t discuss names here but could you let Thyroid UK admin know your endo via email. This could help others. 🤗
enquiries@thyroiduk.org
I do like Dr Weston Childs. Looks so young but knocks most GPs In the UK into a cocked hat!!
Totally 😊👍
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