It’s All Due to the Thyroid: Lessons Learnt From a Patient's Perspective

[helvella]

It's all very well repeating that not everything is due to thyroid but…

All too often, continuing symptoms are due to inadequate and/or inappropriate treatment of thyroid issues.

When a doctor says something isn't due to thyroid, they need to provide a diagnosis of what is causing it. Saying it is something else but then not identifying what is all too often reported.

Self-diagnosis of thyroid disorder seems, in my view, to be a reflection of the poor standard of diagnosis. Ranging from looking only at TSH, through excessively wide blood test reference intervals, ignoring many known symptoms, and severe delays between first presentation and any form of diagnosis. If patients felt that a thyroid disorder would be considered, with careful diagnostic procedures readily and speedily available, they might have more confidence.

It is all very well to reach conclusions about psychology, education and counselling, but they offer no promise that they are available and will be used effectively. If they were, this report would not have been needed. As they are not, how do we get from here to there?

Nonetheless, it is very good that someone has tried to look from the patient's perspective.

It’s All Due to the Thyroid: Lessons Learnt From a Patient's Perspective

Kira Schaab, Thoyaja Koritala, Ramesh Adhikari, Romil Singh, Vishwanath Pattan

Published: June 23, 2021 (see history)

DOI: 10.7759/cureus.15876

Cite this article as: Schaab K, Koritala T, Adhikari R, et al. (June 23, 2021) It’s All Due to the Thyroid: Lessons Learnt From a Patient's Perspective. Cureus 13(6): e15876. doi:10.7759/cureus.15876

Abstract

Symptoms associated with thyroid pathology can mimic and overlap with a myriad of other diagnostic possibilities. Based on the patient's educational status, underlying fear, anxiety, online medical search, the patient can erroneously attribute various symptoms to thyroid pathology.

We present a case of a 79-year-old female with a history of Hashimoto's hypothyroidism, meningioma, who erroneously attributed many of her symptoms to hypothyroidism despite having normal thyroid labs. The patient had symptoms of fatigue, dysphagia, and proximal muscle weakness. Surprisingly the patient already had an existing diagnosis of dermatomyositis and Zenker's diverticulum which could clearly explain her above symptoms. Moreover, the patient did not follow up for whole body scan and other tests that were ordered for cancer screening, which is the standard practice for dermatomyositis.

The patient helped us identify the deficiencies in the current health system regarding patient counseling. We identified factors that could act as communication barriers if not properly addressed which include: (1) patient’s prior medical knowledge, (2) patient’s own underlying fears about their health conditions, (3) use of effective patient education tools, (4) minimizing or avoiding use of medical jargon, (5) role switching to verify patient's understanding, (6) repetition of relevant information, and (7) involvement of the patient in shared decision making.

It is important to recognize that thyroid gland dysfunction is the most commonly self-diagnosed condition by patients and the blame can be shifted to thyroid despite evidence to the contrary if effective patient education and counseling are lacking. Understanding the psychological state of the patient along with addressing the underlying fears, and effective patient education with repetition is the key for patient compliance and management.

Full paper freely available here:

cureus.com/articles/59769-i...

[LindaC]

Thank you so much, helvella - more for the dossier [on the dossers! 😅]

[nellie237]

Well said helvella.⭐⭐⭐⭐⭐

[Tythrop]

So as I understand this article, the patient thought shewas Hypothyroidal but wasnt, and spent too much time on the internet?

[TSH110 in reply to Tythrop]

So it applies to us too - how logical is that?

[greygoose]

I would have thought that the doctor should be educated before thinking about educating the patient. And, who's to say that either education would be correct and not a bunch of myths as happens at the moment?

[diogenes Remembering]

In this case, with the multiple problems the patient had, trying to alleviate those directly given the thyroid results should be the first port of call. I would say that this lady was suffering from nonthyroidal illness owing to multiple problems. In which case FT3 would not be useful as a test. But extrapolating this example to other patients , presumed superiority of diagnosis from statistically obtained ranges over personal experience of the patient is just the fundamental error clinicians make. Personal experience is if anything more important. It's good to acknowledge the input of the patient, but it has then to be taken seriously by the doctor, rather than being brushed aside however politely if the patient's conclusion differs from the doctor's diagnosis.

[Doris11]

Hi there I diagnosed hypothyroidism myself 😬😬😬

[greygoose]

Yes, he said that. But not sure that applies in this case.

[TSH110]

In my experience. It is the medical profession that seem incapable of diagnosing a thyroid condition despite a miriad of symptoms being reported by the patient clearly pointing to this as a possibility. It seems this endless victim blaming now for invented thyroid problems by the patient is the height of medical fashion these days. When is it going to stop and these people look at the real problems we face - a useless diagnostic and treatment protocol that ignores what we have to say about our health or rubbishes it. I wonder how many people with untreated thyroid conditions there are vs people treated for a thyroid disorder who do not have one - my money us on the former far outnumbering the latter. Can one incident like this be meaningfully applied to everyone else? I agree with your comments helvella.

[Tythrop in reply to TSH110]

I couldnt agree more. How dare patients come up with their own ideas? and anyway the patients are only ill if "we", the medical experts, say they are ill, and their illness is only what "we" say it is, and, unlike normal mortals, "we" never make mistakes.

[TSH110 in reply to Tythrop]

Perhaps we are looking on the internet because very good information can be found there if you are discerning, which they sure as hell aren’t giving us, isn’t it called being proactive and taking responsibility for ones health? Funny how it can be twisted into a negative by the useless endocrinology brigade happy to be keeping us ill! How dare we little people challenge their ignorance on all matters thyroid, brought about by their complacent attitude and sheer laziness in keeping up to date with current research. Small wonder they don’t like patients using the internet which can help to reveal that they are the real problem, not us.

[nataliem19 in reply to TSH110]

Couldn’t agree more!! As patients are are often so desperate for help we have to do our own research. Of course we’d all rather have competent doctors who know how to deal with thyroid issues than spend hours online trying to piece together info! I am always beyond grateful for this forum and the help the administrators provide.

[TSH110 in reply to nataliem19]

Totally agree!

[TSH110]

And those that can’t teach, teach teachers to teach.

[tattybogle]

" Hypothyroidism...The majority of patients are either asymptomatic or have mild non-specific symptoms,, but rarely the clinical presentation can potentially be fatal with severe hypothyroidism and myxedema coma. " .... i doubt that is really true.. the asymptomatic ones would not be 'patients' cos they wouldn't have gone to the doctors.. and in my experience 'mild non specific symptoms' is what the GP writes on your notes when you've just told him "your work. social and family life has been going down the pan to such an extent you're dragging yourself through the day but you don't know why"

"Although musculoskeletal symptoms like muscle weakness, muscle aches, stiffness are common in hypothyroidism, these symptoms are unlikely to be due to hypothyroidism, if the patient is adequately replaced with levothyroxine to achieve normal TSH as seen in our patient."

Ok So they show very little understanding about the problems of hypothyroidism or it's treatment.. other than "it's not a big problem /or you're nearly dead ...but once your TSH is anywhere in range on Levo, nothing can be attributed to it anymore"

So since they know so little about thyroid issues, and this article is actually supposed to be about Doctors learning to communicate medical facts more effectively to patients.....

...... why is most of the article banging on about anxious people self diagnosing their thyroid conditions from the internet ??

(she was not self diagnosed , they diagnosed her with Hashis 39 yrs earlier, She's on 50mcg Levo , TSH 1.83 / fT4 1.48 [0.82-1.77] )

"... and had looked up information on Google.....,Her heightened anxiety about her thyroid could have caused her to disregard the information that she had learned about dermatomyositis."

I doubt that is really true either....

The issue is that she didn't understand the cancer risk related to the condition and therefore didn't go for the scans required.. to be honest i'm not really sure where her thyroid 'anxiety' and the use of the internet comes into that.

Last time i had something ?cancerous, i didn't decide it 'must be thyroid related'.. despite how much time i spend reading about thyroid problems on here.

"There is a trend of healthcare providers spending more time with electronic charting, documentation, and less time for face-to-face patient counseling. There is also an increasing trend of patients spending more time online for self-diagnosis. These trends are concerning because they lead to communication barriers and can adversely affect patient outcomes. It is our responsibility to clarify information for our patients. Understanding how best to transfer information to our patients may improve patient understanding of their disease, increase compliance to medication and follow-up tests, and decrease anxiety. "

Well it's good that they realise there is a problem with looking at the screen rather than the patient..

And that IS supposed to be the point of this article .. GP's needing to make sure patients understand the implications of a serious condition.. and how they initially failed to do so in this case.

Is it just me .. am i becoming paranoid .. or does it feel like this article spends more time bashing self diagnosed thyroid patients and thyroid forums, than it does giving instructions to doctors on how to improve their information communication techniques.

P.s she later went for the scan as instructed , she didn't have cancer ... they don't mention if they did anything to make her actually feel better .. or if they tried increasing the measly 50mcg levo on the offchance it might help her symptoms at all...but that's OK ... because she's nice and 'compliant' with her dermatomyositis monitoring now.

[TSH110 in reply to tattybogle]

Nice to know I’m a rarity then, left untreated until I was only days from death. I wonder how many still die of it without any diagnosis in life or death. I worked with someone whom I was sure had a thyroid disorder, many of the symptoms, the thyroid disorder look that doctors were once trained to spot, a noticeable goitre, hair falling out in clumps….but she was told repeatedly it was not thyroid related. She was persecuted at work by the nasty bosses there, disciplined for having to take time off feeling ill. I left the hateful place and asked after her some time after via a colleague I kept up with. I was horrified to discover she had died from her mystery illness that no one at a major teaching hospital (having the reputation as being pants at endocrinology, the no T3 here brigade I heard if you take NDT they refuse to see you 😳 despite paying NI contributions all your working life) could diagnosed. I am utterly convinced she died of a thyroid disorder but it would never be recorded anywhere. It was very sad she was not even middle aged and her beloved child was left an orphan. Does being a rarity make that somehow ok?

[Hidden in reply to tattybogle]

Well said !One of the most cruel things you can do to someone is to deny their reality . And then on top of that, suggest that the reality they present is as a result of a mental instability or ‘depression’.

This was my experience 20 years ago before and during the early years of hypothyroidism diagnosis and I have revisited this in the last year.

By complete contrast to dealing with GPs and Endocrinology, when I had breast cancer, every iota of test results, etc, were willingly shared with me. Obviously I was channeled into the NICE protocol for post op treatment, but when I chose not to follow it, I was able to discuss this in great detail with my oncologist and subsequently have never felt judged or excluded in any way during continued monitoring .

While we, as patients, are addressed by Endocrinology protocols as no more than a spreadsheet of data, rather than complex human beings with individual needs, it seems this pantomime will continue .

[tattybogle in reply to Hidden]

i agree with every word of that... my experience is the same ...loads of real damage done to my self esteem over the years when hypo wasn't diagnosed , (and later when treatment didn't fix it fully).. due to not having my symptoms accepted for what i said they were, and instead, being told all the time;

" we don't think your hypothyroidism would cause that ,and anyway, it's fixed now.. let's try some AD's /counselling "

.....Compared to much, much, better interactions with health professionals where cervical cancer treatment/monitoring is concerned. They have always been extremely supportive ,they accept my views, ( I had a close friend who died very young after a long battle with it , so i do have some informed views that don't always agree with the protocol.) They have never once made me feel like my views/choices are the result of mental issues , depression etc .. they accept them for what they are, and treat them with respect.. and they always draw pictures to make sure i've understood the implications. If i go in and talk about my understanding (from the internet !) of HPV virus and what happens if it keeps coming back .. they are pleased to discuss it . pleased i've already understood the implications, and pleased they can have an open conversation about it and call a spade a spade, and if i've got the wrong idea about something, pleased to explain why and reassure me .... all done without EVER making me feel half as stupid/belittled as my interactions with Doctors about hypothyroidism and it treatment routinely do.

You can't help people from behind a desk by looking a spreadsheet, and ranges .. you need to listen to them, and include them , respect them ... and draw them pictures if it helps..

[Hidden in reply to tattybogle]

Wow! It’s not just me😊 I wonder why there is such a contrast in behaviour. I find primary care as prejudiced as Endocrinology. For too many years, there has been a culture of superiority in the NHS with ‘patients’ expected to be totally ignorant . 43 years ago when I was pregnant, I asked a question and got the reply “are you a nurse?”.

Sadly of course many patients are lacking in knowledge or curiosity and I know there are 2 sides to every story. Last year a very close friend died after almost 3 years’ treatment for bowel cancer. Although she was a highly intelligent person who had a professional career, when it came to matters of health, she was resolutely ignorant. I accompanied her to hospital from the v beginning of her treatment and I saw the difficulty she presented to clinicians. As well as having no interest in understanding her treatments, she was often impolite, to the point of being rude . At the end of her life she actually caused unnecessary difficulties for me personally by refusing advice and help while expecting me to step in.

I actually found it traumatic because in addition to managing an already full plate, her crises exhausted me. It took me several months to truly feel grief after she died because I was, simply and sadly, cross with her at the end.

So I guess what I’m saying is, I can see that it’s so much easier to treat test results than people!

Keeping the dialogue open is incumbent on all parties . I believe I only got at T3 trial now because prior to my consultation I submitted a full written statement of my symptoms and how they affect my life. This is now attached to my notes. So the blood tests tell one story and my statement tells another. It’s in writing. We will have something to discuss in 3 months’ time.

But it is a battle. It would help if there was an easier way for patients to be believed

[tattybogle in reply to Hidden]

Yes .... i do see that some of us are very difficult to help, for friends and doctors alike , very sorry about your friend, if it helps any ,i found over a few years that the 'cross with you' feeling falls away, and you get your better memories of your friend back to keep .

It's the contrast in how we are received that's odd. I've been 'difficult' regarding cervical cancer appointments/advice .. but they have still treated me with compassion and respect for my intelligence... because they understand why reassurance won't really work on me , i know that whatever they cut off or irradiate.... some of us are still going to die from it anyway. They accept i've seen this from personal experience , and they accept i've researched it thoroughly.. and don't cast aspersions on my mental state for doing so.

Basically .. they treat me as well balanced and intelligent until proven otherwise. 'Innocent until proven guilty'.

But when i've been 'difficult' about hypothyroidism .. Primary Care ,always without exception, conclude i don't know what i'm talking about and /or reading too much guff on the internet.. and don't bother to hide their condescending opinion.

Even the phlebotomist.. although usually they are better to talk to than the Doctors.. once said to me (when i mentioned autoimmune hypo).. "yes , but you don't KNOW it's autoimmune, do you" .. well i think i probably do, since the Doctor who diagnosed me found TPOab of >2499.. and told me "your immune system is attacking your thyroid"

Basically .. where thyroid problems are concerned, we are 'easily misled by the internet, and probably over anxious and imagining things'.. until proven otherwise. ..... 'Guilty until proven Innocent'.

And when we are eventually 'proven innocent , often because WE pushed them to do the test... do they apologise for their earlier assumptions about us ? .. do they 'eck as like.

I blame the constant drip , drip, drip of studies (like the one above) that keep going on about self diagnosed hypothyroidism , and internet use, and health anxiety, and how mild hypothyroid symptoms usually are , and how they don't exist anymore once treated etc , etc.

I bet there aren't studies emphasising this sort of thing being constantly shoved under the noses of Doctors and nurses who treat cancer patients.. so they are not constantly being led to believe its 'all in our head' .. which means it's much easier for them to treat us like intelligent adults.. even when we don't agree with them , or 'god forbid' , do our own research .

[Hidden in reply to tattybogle]

Yes - all of that is exactly my experience .One of the biggest issues I had with my friend was that I was not a ‘relative or next of kin’ which often made conversations difficult. Then add covid visiting restrictions.

I was shopping for her while she was shielding and one Saturday night she opened the door (after refusing to for weeks, I had to leave shopping outside!) and when I looked at her she was obviously extremely jaundiced . On a call to the emergency doctor, he asked me to take her to hospital - and I had to wait outside for a couple of hours until she was admitted. Many of the consultations she had towards the end for her life were unsupported and she had no clue what was being said to her. Or maybe she refused to know.

By contrast the hospice welcomed me with open arms and were happy for me to spend 10 hours a day keeping her comfortable.

She never knew I was cross and, after all, she was terminally ill! And I knew her well. But it did take its toll on me .

Thyroid treatment is in the dark ages it seems and the awful attitude towards people just seems entrenched. My hairdresser’s 24yo daughter was having problems (she is now having B12 injections) and at a GP appt, she suggested testing her thyroid function as there is a family history of hypothyroidism. They later accidentally saw a comment on her notes made by the GP: “Mother is obsessed with thyroid”.

What a charmer

[tattybogle in reply to Hidden]

charming . wish they'd make their mind up ; either we're too thick to understand anything properly , or we understand too much.. such as the heriditary/family aspect to certain thyroid conditions..., (so we might reasonably be prompting them to look carefully at our kids, and prompt our kids to keep an eye on thyroid) .... seems we can't win.

And as for obsessed and over anxious about thyroid.. if they wanted to do something useful about that state of affairs , they could try treating thyroid with some seriousness and intelligence, and keep up to date with research and facts themselves, when they do treat it....rather than trotting out 'it's mild and easily fixed' all the time.

It's no wonder we don't feel very safe in their hands and start to feel we can't just do as we're told , and go off and try to learn about it for ourselves.

[Hidden in reply to tattybogle]

As I reminded a doctor once …‘it’s only your opinion’

I’ve said worse : years ago I saw a locum ‘specialist’ with my daughter and asked that it could be arranged for me to collect her prescriptions for controlled drugs. He said “I don’t know you”.

Deep breath ..

“No, you don’t. I don’t know you either. I don’t even know if you are qualified to treat her. And even if you could show me that your are, I don’t know if you’re very good at it. So where do we go from here?”

I do get bored with waking on eggshells around their egos at times .

[Batty1 in reply to Hidden]

Reading your story brought me to tears your were a good friend and don’t think for a second she didn’t know it .. I think people who are dying get angry with everything and everyone and find pushing people away is easier. My uncle is currently dying of lung and throat cancer and what you described with your friend is exactly what he is doing… 😞

[Hidden in reply to Batty1]

Oh I’m so sorry to hear that. And of course they get angry and they will show that to the people they trust the most and with whomthey feel safe.

She had many acquaintances as she belonged to lots of volunteer groups and while people genuinely meant well , she just wasn’t well enough to bother with their jokes etc. She just wanted it to be over .

Try not to take your Uncle’s behaviour to heart but at the same time take care of yourself . 💞

[FancyPants54 in reply to tattybogle]

You also need to let them try different doses and types of medication if they don't feel better.

[tattybogle in reply to FancyPants54]

Wot . u mean like how they happily offer people "50 shades" of Addictive Depressant's , when they say they didn't like the first one they tried ? yes that would seem eminently reasonable.

how civilised would that be .. "well, we have some other types of thyroid hormone we could try , if we can't get you feeling well on this one "

.......... and then the shopkeeper appeared , telling me it was time to go back through the door to Mr Bens shop , where everything was still the same as it was before.. and the nice doctor was still saying, "but your TSH says you're better now , but look i''ve just been on a course , so i can draw you a picture of your thyroid .. look , it's shaped like a little butterfly ..... would you like to colour it in ....."

[FancyPants54 in reply to tattybogle]

😆😆😂✏️🖼️

[FancyPants54 in reply to tattybogle]

I fail to see how GPs can improve their explanations of hypothyroidism and the medication to a patient when they have so little understanding of it.

Most of us know far more than our GPs and that's shocking. I see the article managed to get a shot in about "compliance"! Like we feel terrible so we don't take our medication 4 days out of 7. Right! 🙄

I am feeling very cynical today.

[Vonnie-72]

I too was told I was in danger with my results they were off the chart apparently I was feeling crappy for months I went to the doctor ps 4 times only to be told I had a virus I’d be ok in a few days and was also told by one doctor that I didn’t want to talk to people and it was all in my head!! My voice kept going among many other symptoms dry hair and nails and skin not sleeping feeling rough, having no periods. I just couldn’t put my finger on it and one time I actually collapsed at the gym, I again went to the doctors only to be told I probably had a virus!... I lost it and said I’m sick of having viruses! It can’t be just that they ran some blood tests and within days they were ringing me telling me I needed to urgently come and get a prescription for thyroxine and to make an appointment to see the doctor who told me levels were off the scale and that they’d never seen a reading like it before!! I was started on 200mg and am currently on 150 maintenance dose.

[nataliem19 in reply to Vonnie-72]

I got told the same thing, I went to a private doctor and paid a fortune for blood tests to be told I had suffered from a mysterious virus I wasn’t aware of and that’s what caused all of my symptoms…Thankfully I didn’t listen and in the end was able to get help via this forum for my woeful thyroid levels. I wonder why so many patients seem anxious? 😑

[TSH110]

I did have a vague suspicion it was a later addition to GBS’s original. It is clever tho! The inspector’s name deserves yo be known for it.

[Clarrisa]

To the doctor, at her age it was cancer until proven otherwise. To the patient it was thyroid until proven otherwise. With any potentially serious diagnosis denial is a frequent coping mechanism. It sounds like the patient visited the doctor’s office by herself (without someone to help her process). Surprise, surprise doctor!

[NWA6]

Well in my view the paper is null and void because they didn’t do a FT3 test and still treated using TSH. My test results for 10yrs were all in range, TSH 2 or under, GP’s and NHS very sure that I was optimally treated (although I continually pushed for more Levo to raise FT4 - I had no idea about FT3 at that time. More Levo was not the answer, I never went over range). I was not treated compassionately, I was ignored, told to google fibromyalgia and delicately they introduce the idea that maybe with these cycles of higher and lower moods, these ‘swings’ that I was having, possibly they should look at bi-polar. I vehemently denied I had either of these and stuck to my narrative that it was thyroid. Eventually I was proven correct, low T3, poor conversion. 2yrs after introduction I am living a very full and ‘normal’ life. The NHS say I am on a dangerous path and they will never support the long term use of T3.

[tattybogle in reply to NWA6]

as i read it .. they were saying she ignored/didn't understand the cancer implications of the other diagnosis with the long name, due to thinking 'everything was thyroid ' .. possibly due to spending too much time reading about thyroid on the internet , although it seems to me that's not 'our' fault . it's their fault for not explaining clearly enough that she was at greater risk of cancer.

They weren't denying she has either condition., but i agree with you ... they can't rule out hypo as cause of the symptoms she presented with on those TFT's with no fT3.

And that bit about 'throat symptoms only being due to thyroid if a goitre was palpable ...' what about those that grow backwards / downwards and are only found on scans ?

[NWA6 in reply to tattybogle]

I just can’t take any of these papers seriously because of how dismissive they are. I continually think that any other diagnosis’ I have throughout my life will be missed, and partly because I fear going to the GP because they’ll attribute anything and everything to my taking T3, they have said that what I’m doing is dangerous, not any recognition of the fact that an eminent professor of endocrinology is prescribing my T3, a man well known throughout the profession but now sneered at because he prescribed T3.

As for throat symptoms, I’ve never had a goitre, my autoimmune condition is Ords and yet still when under treated I get the gravliest voice, like a smoke a pack a day.

No, I object to this paper and the condescending tone of it. Eff them.

[FancyPants54]

After years of going around the block over and over, watching my life dribble down to nothing much, watching me get fatter and slower and more miserable, I took the positive Dio2 test result into the surgery and gave it to the GP. He looked at it for a moment, handed it back (I had given it him for my notes) and said "I don't understand that". I explained. He then said "your blood levels are in range and I can only treat to be in range. As far as I'm concerned I don't think it's your thyroid." I stared at him for a moment or 2 and said "So what is it then?" "I don't know." He said. And that was the end of the appointment. He had sent me to see a boy endo without a clue and he'd run a full blood count and my TSH was in range (just) and my FT4 was also in range so that was it. Dismissed. Get old and die on your own.

So now I have to try to do it myself. And they wonder why!