Pitfalls on the replacement therapy for primary and central hypothyroidism in adults
Gisah Amaral de Carvalho, Gilberto Paz-Filho, Cleo Mesa Junior and Hans Graf AbstractHypothyroidism is one of the most common hormone deficiencies in adults. Most of the cases, particularly those of overt hypothyroidism, are easily diagnosed and managed, with excellent outcomes if treated adequately. However, minor alterations of thyroid function determine nonspecific manifestations. Primary hypothyroidism due to chronic autoimmune thyroiditis is largely the most common cause of thyroid hormone deficiency. Central hypothyroidism is a rare and heterogeneous disorder characterized by decreased thyroid hormone secretion by an otherwise normal thyroid gland, due to lack of TSH. The standard treatment of primary and central hypothyroidism is hormone replacement therapy with levothyroxine sodium (LT4). Treatment guidelines of hypothyroidism recommend monotherapy with LT4 due to its efficacy, long-term experience, favorable side effect profile, ease of administration, good intestinal absorption, long serum half-life and low cost. Despite being easily treatable with a daily dose of LT4, many patients remain hypothyroid due to malabsorption syndromes, autoimmune gastritis, pancreatic and liver disorders, drug interactions, polymorphisms in DIO2 (iodothyronine deiodinase 2), high fiber diet, and more frequently, non-compliance to LT4 therapy. Compliance to levothyroxine treatment in hypothyroidism is compromised by daily and fasting schedule. Many adult patients remain hypothyroid due to all the above mentioned and many attempts to improve levothyroxine therapy compliance and absorption have been made.
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You know it makes me so angry when they blame the patient for not taking the medication, I kept religiously with the T4 regime, only with water leave one hour before any food drink, evento it gave me bad stomach /bowle issues, leading to absorption issues ( as seen in blood tests) my gp was anything but helpful, saying the amount of fillers could not be causing side effects 🙄..I am lactose intolerant and have colitis, I have struggled since 2019 on thyroid meds after full thyroidectomy, again I'm now back on T3 as the liquid levoroxine didn't agree with me either, but it's like a game of tennis with these medical professionals, you just get batted about, never really getting the chance to sit down with someone with a brain who as some knowledge of thyroid conditions treated with thyroid medication.. Its so sad we have this in 2022 it's like medicine as gone backwards 😔😔😞
Thanks for sharing, even though it's not very encouraging.
Another publication where the author is clinging to TSH: "Serum TSH represents the best marker for assessing the proper LT4 dose. "
How can we expect to receive adequate treatment if that stuff is published by so-called professionals and then read by practitioners? Will they ever learn?
Yes I have actually come across that with two individuals self declared for no other reason than they had NO IDEA why they were taking levo - vaguely aware it was something to do with the thyroid - given pills with,” take those, there you go, should feel better, come back in a year - bye now!”.
I had the same done to me but I actually understood at least that the Levothyroxine was not an Anadin equivalent and was not optional.
When I sat down with the said individuals over a cup of tea and explained how important it was to take thyroid hormone replacement daily and be sure they were on the optimal dose (NEITHER WERE). Both had symptoms still and both for their size were not on even half the guide dosing. It’s people like this mismanaged for years who will become difficult cases later. We have a friend who was diagnosed as sub clinical years ago - never investigated further and now only on medication since his heart attack and pacemaker fitted.
I could scream sometimes. We need some sort of initiative to just make people aware of their own health problems. Simple leaflets or some physical follow up Q and A in a group setting perhaps. Not everyone will realise they don’t have to feel like ‘poo’ the rest if their lives. Heartbreaking 💔
Charlie-Farley. Putting a heart beside your observations just does not seem sufficient. I have always noticed that the word of the doctor is sufficient, no matter the circumstances. In fact, doctors would like all us patients to be like that. It makes their jobs easier and leaves their competence unquestioned. Off course we can’t force people to consider their own health. In fact it is a major flaw in our NHS. Too many people erroneously put their utter faith in the system. Re: your example of the heart attack and hypothyroidism. Medics own guidance in this very instance highlights this to them. It costs so much more to deal with this further down the line - no matter the cost and quality of life for the patient. All the time it comes back to how (allegedly) easy it is to treat! The irony is inescapable. A whole world of (paid) counselling for many health conditions would be useful to be available. Hypothyroid diagnosis for one. Also so much very expensive surgery accompanied by little or no after care information is another observation of mine. This is one job that could be unloaded from GPs (but they don’t actually do it in many cases) and nursing staff. Leaflets would be honed over time with FAQs. Someone ideally should be available to discuss when necessary. I will refrain from discussing the difficulties associated with this line of thought.
Of course you are right Advocate/advisory would be the way forward but it would need to be independent of NHS, otherwise it would just become another layer of NHS mantra and dogma.
It will come, just need a critical mass of people prepared to go to the next level. But can you imagine the savings in the NHS if people were to have advice and support???
Let alone Quality of life - Never factored into a cost benefit analysis. 😞
I have a friend who was diagnosed with hypothyroidism she was my hairdresser but always complained she never felt well, when I was diagnosed with Hyperthyroidism she thought both conditions were the same, I explained the difference, she again complained about feeling tired, cold sluggish.. I asked her how she took her thyroid meds (she still has her thyroid) her answer "ho well when I remember to take them I swigg them down with my coffee before work 🤦♀️🤦♀️🤦♀️.. I told her that was probably why she felt unwell and asked what her last bloods were..." ho I've no idea I had them done about 2 years ago 🤦♀️ bet her gp loves her.. 🤦♀️🤦♀️🤦♀️
Can you get her to sit with you for five minutes and make her realise how desperately important this is birkie? I swear to god people’s conditions are not being adequately explained to them and it’s creating so much further illness and irreparable damage as a consequence.
The Doctors moan about being overwhelmed, but if they would just treat thyroid issues adequately they would significantly reduce their workload. 😱
I agree, I asked her several times to get an appointment with her gp for thyroid bloods to be done as she'd not seen her gp in around 2 years 😱 and what was her surgery doing anyway 🙄 I also asked her if she recived text messages telling her that her thyroid bloods were due to be tested.. She told me she never recived anything like that, she was put on T4 and left as was my mother some years ago, before I knew about thyroid conditions (wish I'd known about them when my mother was diagnosed with an under active thyroid she went on to have a heart attack 😢) unfortunately I don't have any contact with her anymore as I think she as scaled down her business ( hairdresser) but I did try and sometimes I got the old answer "I haven't got time I'm so busy" what else can we do... My son as just found out his thyroid hormones have come back abnormal hypo.... And I'm on the case 👍👍👍👍👍😉
Perhaps, being an old performer in the field, you can see the steam leaving my orifices. There is the gap between revelation that things aren't quite right, and the implementation of what that means, in medicine, together with the apologia that " that was all that was known at the time", conspicuously avoiding blame. There are no culprits in medicine, except perhaps iconoclasts who defy the status quo. Not science and logicality as I know it.
Well, my doctor said the other day that nowhere is there as much lying as in medicine. Of course, I don't want to belittle all medical professionals; there are certainly many honorable people who do a great job. But what an indictment, isn't it?
Maybe because of the 'conspicuously avoiding blame' attitude?!
Well one endocrinologist told me and I quote.. "we are good at our Job when you are diagnosed, but awful at actual diagnosis... I said" that fills me with confidence"... 🙄🙄🙄
And did he also say whether or not they are good in treatment after the diagnosis?
OMG, might as well play bingo. I've had my own experiences with an endocrinologist (posing as a thyroid specialist) - turns out he's a TSH evangelist. I don't think I'll see him again.
Well if I'd had the energy I'd have asked him that.. But he was a typical endocrinologist who religiously stuck by nhs guidelines, I had 2 over range calciums which in turn requires the parathyroid hormone to be tested along with calcium and vitamin D.. Both my tests came back as over range PTH with in range but top end calcium, the definition of this is normocalcemic primary hyperparathiyroidism, but the nhs don't do anything about this condition until the calcium goes over 2.85 nhs guidelines, but yet people with levels as mine have had successful parathyroidectemys ( private) I have all the symptoms 😭 and now through several incompetent endocrinologist within the nhs who won't deal with me my son is paying for me to see a private parathyroid surgeon in Oxford, I see him on November 18th.. It can't come soon enough 😔
Oh, I am sorry to hear about your condition and that you are struggling with the system so much. The good thing about the bad is that you are getting help from your family. Hopefully, you will get this health problem under control soon.🤞
I’m always confounded by the departure from basic scientific principles in medicine- Classic one being only change one variable at a time. Inherent limitations of any test and concomitant uncertainty and actually recognising it.
Let’s not even get started on with symptoms? Heterogeneity of anything biological - more uncertainty.
That’s why symptoms are sooo important and latitude should be used.
You would think that was one of these phrases that would not need repeating. It’s pretty much an accepted ‘thing’ in about every walk of life; except medicine it would seem. When discussion of colour or religion is disparaging, there are consequences. No-one’s heart is in quite the same place as everyone else’s. Sometimes it’s even on the opposite side of the chest. If a cut was to be made assuming it was in the same place, without checking, it would be very dangerous for the patient. Over simplification. Why is there no leeway in hypothyroid treatment?
I just wish the professionals who deal with us understood we are all different, instead of the robot lable..which goes something like this... Your levels are within normal range so therefore you can't be having any symptoms (bull💩 doctor) an example of calcium.. Mine was 2.79 adjusted to 2.67 in March 2021 I felt awful, serious bad headache, vomiting, palpitations,sweating, then I was taken to A&E in the Aug 2021 with a very fast heartbeat same symptoms as in March.. calcium came back as 2.72 adjusted to 2.59..ranges for calcium (2.10..2.60) the specialist said "your symptoms can't be related to calcium as its in normal range".. You just can't make it up.. I then said " normal for who doctor"😠😠😠
they literally are treating the lab work- and I’ve told more than one this then explained how to use and interpret ranges. I’ve posted and put what I did in my bio and recent posts 🙄😂👍.
They literally don’t know it’s plain ignorance not wilful in any way. Too busy hitting targets to have an enquiring mind. Partially systemic, but those who thrive in the current working conditions hmmmm…..
I've said this statement before Charlie-Farley relating to ranges of blood tests... As I said gps and specialists tell you you can't be having symptoms your blood work is in range... Similar sinario.. You go to your gp you tell him you've lost your leg... Your clearly sitting there one leg lighter but your gp is fixated on your last report, which clearly states you have both limbs.. And he sits at his computer screen arguing "no you have both limbs" and you shout "why don't you just look at me examine me and ask me how I feel doctor" 😠😠😠😠
😱…..😬….😂……Yep! Crazy world. I just won’t take no for an answer - they really don’t like me- but I’m not in it for the popularity- I’ll live happy with their dislike if it means I am well 🤗
Crikey my mouth was hanging open throughout the reading of this. My first reading was how utterly basic it is. This is being put out there for medics? I thought what an utter waste of resources and that they would know these basics. (Silly me). Then I wondered why was this paper really necessary in the first place. Is it just to have a go at patients again? Well yes that too. BUT are we not just witnessing first hand how utterly clueless the medical profession is re: hypothyroidism, that this amounted to information for them? This paper is so remarkably ‘low level’. This piece of research is a damning pure demonstration of the level of hypothyroid knowledge and treatment within the medical community. It may be that someone has wasted a lot of money on this piece of research but somehow it just shows (if anyone is actually looking) the degree of ignorance. Patients can be excused but medics certainly cannot.
The sad and concerning thing is that a large cohort of thyroid patients on this forum have so much lived experience of thyroid disease that is ignored, side tracked or mocked by many ( most even)medics.
It took me around 50 years to find the key that I was convinced existed to unlock the reason for my gradually deteriorating health....until I could barely function. When I did find it, considerable irreparable damage had been done. However, with correct though belated treatment, enough was reverted to allow me to function again....and think straight!
We may not have medical degrees but we are capable of making observations and of drawing conclusions... given the correct information
This paper does neither and simply feeds the already mistaken and damaging "guidelines" that are causing so much damage.
I'm a stubborn ( now old ) woman who has doggedly stuck with my conviction that an answer did exist...one patronising GP had the nerve to suggest I was just upsetting myself and that it was having an impact on my mental health. I left her in no doubt as to the state of my mental health
Now, my situation is different thankfully. I did eventually discover that I have a form of Thyroid Hormone Resistance and that I need a supraphysiological dose of T3....enough to be very dangerous should the condition not exist
My current GPs, after discussion and persuation, now accept that I really didn't arrive on a broomstick! One of them even highlighted Patient Autonomy which was helpful. They cannot help me (and the one endo I saw gave me advice that would most likely have hastened my end) but they did, in the end, listen.
These GPs now leave me to take control of my thyroid treatment and I occasionally give them updates. I wrote a timeline/ explanation which is in my notes. They break the mould of 21st century thyroid treating medics.....but still they cannot treat me!
This need not happen but it does....and it makes me see red.
It is not remotely in the best interest of patients ...yet they persist, despite the evidence under their noses.
I arrived here a number of years ago, in desperation, I had by then read about T3 but was utterly clueless and hit a brick wall if I mentioned it.
This forum helped me gain the knowledge I needed to recover ( reasonably well anyway) because the collective knowledge here is vast and gained through personal experiences....it should be compulsive reading for medical students who are currently being left unable to understand or treat thyroid disease because they are being presented with the perpetual nonsense fed to them
Many adult patients remain hypothyroid due to all the above mentioned and many attempts to improve levothyroxine therapy compliance and absorption have been made.
I think the response to that might be....open your eyes and ears and try harder, because the answers you need are out there not in papers like this.
One of those GPs very quietly said to me a few weeks ago, " Your personal management is very good". It took me a moment to realise he was talking about my thyroid treatment. He understood!
Sorry for the rant but I will never understand how man can achieve so many wondeful things ( the James Webb telescope for example) yet they completely fail to address what is as clear as the noses on their faces.....if they dared to look!
No apologies necessary for ‘ranting’. It’s not even ranting. It’s coherent. It’s right. I have no doubts at all, that we on the followers respect and bow to yours and everyone else’s expertise on this forum. Most of us would not have got this far without your bravado, guts, staying power and the rest. There is a better word encompassing this but unfortunately it escapes me at this moment. You remind me of some woman warrior, Bouadicea perhaps. What would we do without the likes of you?! Thank you.
Oh! There are many like me here and for the greater part it's thanks to them and their impressive thyroid knowledge - far greater than mine - that I have learned enough to survive.....and now to rant!!
I have been right through academia. I’ve also got an H&S qualification and would you believe a city and guilds domestic electrical installation qualification (self confessed study junkie). I could have a right good game of scrabble!
BUT! all of these have conferred NOTHING on me other than a piece of paper and an acknowledgment I can study and have studied and understood a particular area of knowledge. Many People on this forum have more knowledge and have read and understood an equivalent or greater amount of information and I hold the more learned members on this forum in high esteem. 🤗
Yeah DippyDame it beggers belife, we can put a telescope in space, land a man on the moon, and now even thinking of exploring Mars.. I do hope none of those travelers develop any kind of thyroid condition, because they'd never make it to Mars.. 🌌 Better just drop them off on the sun ☀️😂😂😂😂😂😂
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