Quite a wordy title (and a lengthy post - sorry!), but it's something that has been bothering me ever since I passed the first 6 months post-TT, and even more so now, following @waveylines' post from earlier this week concerning the NHS' newly reiterated views on NDT (thank you for making such an informative post, by the way!).
Throughout all of this, from TT to now, I don't feel that a single doctor I've seen on the NHS (save for my old GP) has had any concern whatsoever about my symptoms, or how I'm feeling both physically and emotionally/mentally. Whenever I've tried to voice these concerns, they just aren't interested, dismissing me with, "Your bloods are in range, so there's nothing wrong with you", and blaming any symptoms I have on some kind of personal failing of mine. Being in this community for the past 2 and a half years, I've learned that this is (unfortunately) far from an uncommon experience.
NDT has so far been the only thyroid hormone replacement that I've tried where I've been able to see improvement in a lot of symptoms that I had begun to believe were permanent, or that I simply "had to learn to live with" (to use the words of a consultant I've seen before). That post from earlier this week really got me thinking - why doesn't patient quality of life (QoL) seem to matter? It's all well and good pointing to research studies which say that there isn't a marked difference in QoL between Levo and NDT patients, but if a patient of yours is sitting in your consulting room categorically stating that they feel better on NDT or T3, shouldn't that count for something? I don't know how big or small the population of patients on thyroid hormone replacement for whom Levo monotherapy is not sufficient, is, but I am having trouble wrapping my head around why it is acceptable practice for any minority to be overlooked where QoL is concerned...
What if your bloods are "in range", but you still have visible symptoms? What if your free Ts are all nicely in range and you feel well, but your TSH is suppressed - must you need a dose decrease at the expense of your wellness? Why do blood results matter more than a patient's symptoms, when continued symptoms must be an indication that something isn't right?
I'm not trying to suggest that bloods don't matter - of course they do. But why don't symptoms seem to matter at all here? I understand the concern that suppressed TSH is supposedly linked with atrial fibrillation and osteoporosis, but, with all due respect...I am already sick. I already have a chronic illness - one (in addition to Graves') that has arguably been created by the NHS' decision to remove my thyroid gland. Perhaps this is a controversial take that I'm making based on emotion, but would it not make more sense to just view these increased risks as an associated hazard of being on sufficient thyroid replacement post-TT for some people, instead of barring me from any semblance of QoL by undermedicating me, all in fear of a suppressed TSH? (Of course, I don't mean to downplay the seriousness of the above conditions.)
Perhaps I'm still mourning 'the old me', and my old life pre-diagnosis/TT...but even the before and after NDT photos that I've been taking for my own documentation are starting to make me realise that my symptoms weren't just in my head or my fault - that it might be possible to have the life I was promised by my then-endo before I 'okayed' the TT. I was hoping to get my bloods looking really good somehow, while using the photos as extra proof to try and convince the NHS to prescribe me Armour (to fix the mess they created...), but those hopes have been dashed now. I'm just really curious to hear what the possible rationale behind the guidelines/practice of treating hypothyroid patients solely based on bloods might be.
Sorry, that was soo long but I would love to hear if anyone has any thoughts on the matter
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lau99
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and blaming any symptoms I have on some kind of personal failing of mine.
Doctors have been doing that to me for decades. They have found some way of casting doubt on my honesty or my sanity in practically every appointment I've had where the problem wasn't visible.
After being switched from mercury Pharma to Teva new formulation I became very ill so did my daughter I went to two different GPS who kept saying it was my age my daughter went to her GP who told her it’s the government to blame go and get private blood tests done she did and I did to it came back wee had multiple thyroid abnormalities my daughter seen two endocrinologists I didn’t see even one till after I had a heart attack yet I kept telling my GP about my heart racing I think that GPS are being told to hold back from sending elderly fo test because of hospitals being overwhelmed it looks like depopulation and decarbonisation if you ask me.
The comment "Looks like you've gotten plenty of help!" as if I was now cured, will always stay with me. Said by an ignorant GP who was looking over my medical history, which listed a bunch of antidepressants they had put me on over the years because they knew nothing of thyroid problems.
(spoiler alert- those meds made me feel worse than ever and an increase in levo is what I needed)
Hey! I haven’t had a TT but I have an underactive thyroid and the photos part you talk about resonates with me. Before diagnosed I looked awful, swollen, dark circles under my eyes I could go on. Since I’ve added T3 all that has gone, but I can’t get T3 on the NHS!!! Not sure this helps you in anyway but just saying I have experienced similar re the photos etc ❤️
They are just too busy to really care now these days. You do find the odd Dr that does, but then they get pushed out. The world's population is increasing dramatically and we just can't keep up. We keep building houses, but not new Drs surgery's or schools etc. It's all about the money now sadly, we are but a number!!!!
It's not just the house building, although that is a factor, it's that fewer young doctors are becoming GP's and we are not replacing those who retire or leave the profession through burnout. My practice has lost two very experienced GP's in the last 12 months. Its also more difficult to recruit doctors from abroad.
They are so overwhelmed. However that doesn't excuse them as even private doctors treat their patients with disdain and they are hardly overworked.
I totally agree! We are not a bunch of numbers, we are people whose symptoms are meant to be ameliorated until we are euthyroid ie symptomless. What could be simpler? Having been to hell and back and my symptoms being ignored or misdiagnosed in Isolation despite telling the white coats there was a history of thyroid disease in in the family I now self medicated with NDT and look after myself. I feel a whole lot better than . I ever did under NHS care and Levothyroxine monotherapy.
God knows when a bomb will be put under them to get them to shape up or ship out.
Please don't apologise for writing such a logical, well thought out statement of your thyroid journey especially since having had surgery.
I 'd just like to see this published in the next edition of the BMJ - and everywhere and anywhere where it might get traction :
It seemed apparent to me several years ago that my trust in the NHS was misplaced and fighting the system in order to get better simply exacerbated my symptoms.
For me, finding Thyroid UK was both alarming and enlightening - and you then come to realise it's endemic, and not just you, the issues have been there for a least a couple of decades, but when it hits you and your health, it becomes very real.
I guess as much as I don't feel confident on the internet and still learning, without this little laptop I would be in a much worse state mentally and physically, and totally reliant on the NHS to ' save me ' and taking copious medications for presumed other health disorders and believing I was being helped and cared for.
The NHS in theory and at conception was a wonderful thing, it's now become an industry and a business employing many thousands of people.
We are simply the 9-5 business, an appointment slot, a 10.15 or a 4.45 pm to be processed as dictated to by the computer guidelines and very few people who care look up and question what they are doing as it's too big a question to face and do something about.
My sister asked me the other day why do endocrinologists have a bias against this t3? Just her curiosity from hearing me stew about it all. I said in some countries where is is covered, cost.
But they usually talk about heart issues etc. And grab onto certain studies and won't let go. And disregard contradictory ones. They can't have that awful possibility coming to fruition (insert eye roll).
But hey they have no issue with someone having no improvement in symptoms for decades. And suffering year after year . All in the name of what if? Even when those same people reach the age that any health issue could occur regardless.
Lack of common sense, is the true answer.
And ego. And pressure from the system, for some.
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My GP has surprised me this week. So don't give up hope. My endocrinologist is monotherapy and the rest is rubbish kind of thinker. I told my GP I am suffering and my greatest fear is to finally be in normal range (after a TT) and not listened to that I am not well.
She said she would not & at least is open to NDT. Wow, I honestly thought she would support the endocrinologist, who acts like she is the gatekeeper of everyone's health choices.
Hi Lau99, Many of us here have become advocates for our own health and feel more supported by fellow members than our GPs. As I have TED, I find having a photo record of my eyes helpful for showing medics and as a personal record ( although I keep them in ‘hidden’ on my phone so I don’t have to look at them alongside my family/ friends photos!)
Thank you for writing such a well thought out analysis of the current inadequate understanding and treatment of the complexities of thyroid disease.
Doctors seem increasingly glued to the computer screen, rarely look at the patient, let alone actually physically examine them
Endocrine diseases are invisible, difficult and an “unglamorous“ branch of medicine. Thyroid specialist endocrinologists seem increasingly rare.
As to numbers affected, it’s vast. There’s approx 2 million people in U.K. on replacement thyroid hormones. Conservative estimates suggests 10-20% of these patients don’t do well on just levothyroxine…..that’s 200,000-400,000 patients…..over 90% being female
Any NHS patients not on just levothyroxine are supposed to see an NHS endocrinologist once a year. They would need vast increase in numbers of thyroid specialist endocrinologists to be able to meet this need.
It is possible, but difficult to get alternative treatments on the NHS, but your young age is probably not helping.
Many of us “difficult patients “ are post menopause, and with age can come an ability to stand up to the medical authorities and push back.
Delighted to hear you’re doing much better on NDT…..keep going.
I think there are two or three factors relating to the NHS and thyroid disease, which explain the situation. Only my view of course.
I have hashimotos and first went to the GP in 2008, only diagnosed in 2016 after a physiotherapist had a hunch about global inflammation and asked for thyroid antibodies etc to be tested. In 2014, I’d even had an underweight baby! I’m lucky he is ok, if a little petit even now.
The truth is that GP’s don’t have the depth of training and or knowledge on thyroid disease, and yet it is them who are charged with frontline diagnosis and subsequent management of our care.
There is a shortage of GPs, and endocrinologists for that matter, and a long-standing underfunding of services to support patients with chronic medical conditions. The current administration are running down the NHS on every front. It’s a political decision which will affect people who can’t afford to pay for private endocrinologist care in particular.
There’s little research being done by drug companies and as a result we haven’t moved from Levothyroxine. levothyroxine is not very effective on its own to treat thyroid deficiency of any kind. A lot like SSRI’s are rubbish at treating depression and we haven’t moved forward from the late 1980’s there either. Big pharma are making a lot of money supplying both levothyroxine and SSRIs and so there is little incentive for them to research and change that situation.
Thyroid disease affects men as well as women, but predominantly women. We know from research that the health service is basis against women, so this is also a factor.
The best thing to do in my experience is to read up on the subject (your condition) as much as possible - some papers are quite scientific obviously but you can start to form generalisations about what’s coming out of those studies. There is plenty research coming out of china / japan etc as they suffer higher occurrences of thyroid disease and they want to actually tackle it! Once you know more than your GP, you can manage your own care and know your rights and push for certain things. You have to own your own health and be proactive. Its the only way in my experience!
If our NHS is so wonderful and brilliant, why hasn't it been emulated in other countries?
It doesn't work, in practice, that's why. You get a cut price service with patients' health constantly compromised so as not to disrupt budgets.
Like many people on here, I was (under)dosed on levo according to my TSH for over a decade before I found Dr P and discovered the benefits of NDT. I asked the endo I had been referred to about NDT and his reply was " it is pure quackery and it doesn't work."
I felt like the old me, for the year I took Armour. I wish I could have afforded to continue it.
I have had nothing but bad experiences at the hands of the NHS. They even told me that I had stage 4 liver cirrhosis 6 years ago, on the strength of a Fibroscan kPa score. Being told I was life limited, my huband retired early so we could spend more time together.
Thirteen months later, a follow up Fibroscan showed that the original one was wrong.
Obviously we were relieved, but we had already changed our lives drastically by him retiring several years early and the monetary implications that entailed.
I now self source T3 and hope to work up to feeling as well as I did on Armour.
The pharmaceutical industry is all about making obscene profits. So it is not about cure, but managing symptoms because that's what brings in the money (indefinitely rather than once).
Consequently the number of sick people grows larger and larger, the doctors can't cope, patients become statistics, and very few in the medical profession actually care about the patient.
Hi lau99I hear you too. I had a gp who told me that I was "nearly 45 and might just have to learn to live with it" and offered me antidepressants! This was during the appointment where I told him my body felt like it was dying!! That's not the only thing with that particular gp but there's no room here to go on!
I had an appointment with endo who didn't even ask what my symptoms were and looked at his screen and my tsh nothing else! When u told him I didn't care about his ranges I just wanted to be well, he said "so do I....to a point". When discussing the risks of undermedication he told me they were negligible compared to suppressed tsh! If I hadn't found this forum and read other people's experiences i would think it's me and I would have given up!! The battles are too hard when you feel ill! No wonder my gp told me stay off the Internet when I was diagnosed!! You naively think Dr's have your best interests at heart but I don't think they cover listening skills or how to involve their patient in their own care. All the more important these days when so much information is avaliable on the Internet!!!!
I can't help thinking that one factor is the fact that at least 90% of people with hypothyroidism are female. The medical profession has a long history of thinking that women are hysterical (hystera being greek for uterus) when it comes to health and I do believe we are far less likely to be listened to. Even the female doctor I saw recently jumped in after my first sentence and overrode what I was trying to say. I'm pretty sure she wouldn't have spoken like that to a man.
Yes! Yes! Yes! In the 14 years since I was diagnosed hypothyroid, I have never, once been asked what my symptoms were/are, ever, by any doctor, anywhere! Worse still, with blood tests every year, I have NEVER been asked whether changes in symptoms (worse-better) due to changes in medications, have changed anything!
My thoughts are that they'll spend millions on fertility treatments when not being able to conceive does not negatively impact your physical health, and yet people are 'entitled' to fertility treatment because it's 'my right' to have a baby if I want one. Whereas me feeling better because I've now got T3 and am lamenting the lost 12 years of my life where nobody listened to me and all my multitude of problems were dismissed because my 'bloods are ok' doesn't matter to anyone. My QoL was severely impacted for years because they'll spend huge amounts of money in other areas which are equally only relevant to a small minority of the population but not improved thyroid treatment. It's incredibly frustrating. Is it not fashionable enough, or are there some other reasons we don't get told about? If a patient tells you something works why is nobody willing to listen?!
It's funny isn't it. If we believe like the NHS does that a condition like depression exists (there's no bloods or test for that), then it's ONLY symptoms that are used - "Don't feel better? we'll try something else". But give them the technology (tests) then they don't care to engage with us any more.
Unfortunately this so common. When my thyroid decided to start playing up I went to the gp with lots of hope that they would get me back to how I was previously. Yeah right!! I was told take this tablet once a day and soon you will be back to normal. Well it never happened. I started on thyroxine and gradually they increased to 100mcg and my levels were within range. I felt like I was a 90 year old not a 40 year old. I had extreme pain in my hips especially first thing in the morning and trying to get out of bed was excruciating. I had awful migraines, my legs felt like I was walking through thigh high mud by 3pm, I was fainting from being unable to cope with temperature changes, so embarrassing in M&S food hall! I had palpitations and a weird feeling in my chest that felt like ice draining down the inside. I complained about these symptoms and was told that I had arthritis probably starting, it was stress causing my migraines, etc..I asked for an increase which was denied, and was told not to go on the internet and read all the rubbish especially as "All Americans are mad"!! I gave up with gp's and bought ndt online and treated myself to how I felt. I have never had the pain in my hips since then, the migraines are few and very far between, no icy feeling in my chest, and by dosing twice a day my legs no longer feel like lead by 39pm. I am no way anywhere near the "normal" I used to be, however, I am a damn site better than I was. It is so unfair that to get to where I am I have had to treat myself!
I wonder how many other people with chronic conditions are forced to self treat. I know a lot of people with low B12 self inject as the NHS won't allow them more jabs than every 3 months.
I also know of people with Chronic Fatigue and Fibro who source Low Dose Naltrexone which is really hard to get on the NHS. I have Fibro and have considered trying it but I think there's only one pharmacy in the UK that dispenses it.
And you need a prescription of course. No wonder desperate people are driven to these measures. Then the NHS has the nerve to warn people off buying medication from the Internet.
My daughter recently had her Ferritin levels checked and it was 3 points off the bottom of the range. She was told it was fine and no further treatment needed! Her hair has fallen out in huge clumps and she was suffering dizzy spells but nothing needs to be done according to them! I give up!
I was told take this tablet once a day and soon you will be back to normal.
Did the doctor hold up two fingers close together and tell you that all you needed was a little white pill and you'd be all better? Apparently this is common, and I think it is so insulting and demeaning. We aren't toddlers!
Well written and it is hard to say so much in a few words. #1 I think many disorders including thyroid are related to nutritional imbalances/deficiencies. #2 I believe our foods are so maneuvered / manipulated with from seed to delivery it is a miracle we are still standing. #3 I believe doctors are prescribing chemicals they know "Jack Nothing About" , thus they are incapable of recognizing side effects and keep treating side effects as new illnesses! Wellness is not the goal of Healthcare any longer, so diagnosis/ the art of diagnosis is no longer required. It does matter what is causing imperfect health cause many things can cause a same disruption in health and if you don't get it right then you don't experience good health no matter how faithful you are in following "Doctor's Orders" . "Care of Health I am convinced these days are found on chats like this one where real people share real experiences and trouble shoot. Sorry to say many people are metabolically a mess because of doctors especially here in the U.S.A. We need the "Barber's Poles" returned to out side of "Doctor's Offices! You know places where someone actually listens to what you say and have the ability to make "unloaded" observations!
The post was well worth reading, and I agree with everything you have said, well done , I’m waiting on a phone call as my surgery are having a meeting today,I was started on a trial of liothyronine for three months had had two prescriptions then the last one I put in they wouldn’t give me , so all really has gone to pot didn’t know what to do , what a mess , I don’t know if it’s because my tsh went suppressed or what all I know is it’s a bloody nightmare, anyway what a good post
Thankyou for that I’m still waiting on the phone call to see if they will let me have them, if not I’ll have to go on my own, but thanks, hope you get what’s needed to keep yourself well.
As a thyroidectomy patient myself I definitely feel your pains …. My QoL has diminished a lot since my thyroid removal even though I was repeatedly told by my Endo that “Once you start your medication everything will settle down” absolutely a lie and I don’t feel like my body has ever settled down just spiraled out of control.
My take on this situation is that once they take your thyroid get your numbers somewhere in range they throw you away like a piece of trash and complaining or begging for NDT or T3 makes you look like a drug addict looking for a fix and this is exactly how they treat you … like your a junkie. Im sure some people have great thyroidectomy experience and your extremely lucky but most of us aren’t.
Very well said, I feel exactly the same way...even if one day, my body feels as well as it did before all of this thyroid stuff (perhaps wishful thinking?) it bothers me to think that the mental anguish I've been through as a result of this poor care may be something that stays with me for life. This chapter in my life will most certainly leave a permanent scar.
I know that my doctors don't know me or my situation (and they certainly haven't made the effort to find out), but as a patient, it's really hard to deal with the feeling of betrayal that comes with trusting your doctor has your best interests at heart, only for them to try their darndest to avoid you when their 'amazing plan' doesn't go accordingly, and you aren't "just like everyone else" after the surgery that was meant to "cure" you. It almost feels cowardly on their part.
Very true … I had so many issues prior to thyroidectomy once my thyroid was removed those issues cleared up to be replaced by other things. I did your photo show and tell with Endo’s and I even took my Fitness Certification license in along with pictures and they still didn’t see the issue… For me its been a major weight battle and when I showed my proof that I wasn’t a fat a$$ prior to surgery and actually work in the fitness industry the doc said T3 isn’t for weight loss and I can give you diet pills but you will have to pay for them on your own… Honestly I felt so ashamed of myself and felt like a big loser for not being able to stop the crazy weight gain.
I dread going into the doctors office because my weight always comes into play for everything and I gave up trying to convince these idiots that I wasn’t fat until you took my thyroid… I would have rather lived with the cancer because I just replaced one horrible health issue for another… sad.
There is not enough discussion around surgery, medication or results, I feel like a tick box exercise. With even a relatively simple old levo increase refused on someone's whim, I can see how hard anything more complex is. I had major surgery and wonder if it was the right thing but even for surgery appointments are so rushed and you feel you will lose your place and something worse may happen.
Lau99, very well stated post and a common problem in the US, also.
I've often compared thyroid monitoring with diabetes. Diabetes patients require a lot of self-monitoring and medication adjustment and, at least in my experience, are given the tools to do so. Thyroid monitoring should be as simple to access and adjust. Diabetics as young as pre-teen are given the responsibility to self monitor - we are considered to not possess the mental capacity to do so.
I tend to stay focused on thyroid cancer, but feel that the lack of objective presentation and scoring of symptoms applies to anyone who has had a TT or thyroid dysfunction. I put together a "symptom checklist" based on the large international thyroid cancer quality of life surveys done since 2016 which patients can use to "score" their symptoms and provide time points and language to help state their symptoms "objectively" while correlating them with thyroid hormone dosing and lab results. It isn't magic, takes thought and time but can help support the need for appropriate medication.thyroidcanceradvocates.net/...
More and more research is being done in support of combination (T4 + T3) therapy. Sadly, it takes a long time to put research into practice, especially when it goes against old outdated opinions and guidelines. In the US it's relatively easy to fire a doc and find another but can be expensive — my medical insurance costs above $5500 US/year and meds another $2400 which eats up about a third of my retirement income. Even at that some doctors complain they don't get reimbursed enough. But I do have access to doctors who are up on the newest research and are willing to collaborate instead of dictating.
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