Appreciation and thanks

[HowNowWhatNow]

hi

Just wanted to say how grateful I am for this group, which has saved thousands of us from relying on the poor quality, low input thyroid medicine which comes as standard these days. And for the joy, relief and release from pain, fogginess & tiredness, and for the clearer understanding, that all the interactions here promote.

Doubly and triply grateful to those who are admins and other organisers here and put in so much time and thought into answers and pieces of research that shed light and advance health knowledge.

I feel confident that the knowledge in this group and from the doctors who listen to people like us will percolate into the wider thyroid medicine community. And that in ten years time you will not need to stumble on this group in order to get good advice and signposting to doctors who care about more than just numbers. I really hope so.

[J972]

Well said!!!

[Charlie-Farley]

🤗🙏♥️

[Tythrop]

Hear hear.Wish the percolation would speed up though

[HowNowWhatNow in reply to Tythrop]

The percolation won’t come without huge amounts of effort on our part. If the past 10 is anything to go by.

What change would you most like to see?

[Underactiveclare in reply to HowNowWhatNow]

I know it’s not my question but I would love to see more specialist thyroid centres around the country where research, testing and education can happen.

[HowNowWhatNow in reply to Underactiveclare]

Appreciate your response.

What a great idea!

Does this exist anywhere in the U.K.?

And if it doesn’t, why doesn’t it?

[Underactiveclare in reply to HowNowWhatNow]

I know there’s a thyroid clinic somewhere near Manchester but nothing to that extent. This site is truly a blessing

[HowNowWhatNow in reply to Underactiveclare]

How is it that such a common condition still gets such little care, research funding and frontline awareness?

[HowNowWhatNow in reply to HowNowWhatNow]

Even if it is easily medicated with levothyroxine, why not roll out more centres where we can be told this and be patronised in all of the other colours of the rainbow?

[Underactiveclare in reply to HowNowWhatNow]

haha patronised is right. I hope one day things will change.

[Zephyrbear in reply to HowNowWhatNow]

Significant lowering of the TSH threshold before treatment starts and the cessation of reliance on TSH readings to assess how treatments are performing once medications begin with attention shifting to FT4 and, more importantly, FT3 results. That would be a major step in the right direction. And doctors listening to patients when they are trying to explain how they feel.

[Tythrop in reply to Zephyrbear]

Yep

[Tythrop in reply to HowNowWhatNow]

Doctors to take us seriously would be a start .We have credibility but they can't see it .

[humanbean]

I agree this forum is a godsend to anyone with thyroid disease, and it helps so many of us to help ourselves since doctors won't.

I would disagree about the next ten years changing thyroid treatment dramatically.

I'm a confirmed pessimist when it comes to any facet of medicine and actually think it is going to get worse - a lot worse - and this recent thread was a huge warning to all of us :

healthunlocked.com/thyroidu...

More and more diseases are being declared to be psychiatric / psychological / functional in origin. The powers-that-be seem to want to declare as many sick people to be mentally ill as possible so that they won't need to build hospitals for the average citizen, won't need so many expensive biomedical doctors, won't need to do research for physical diseases at all, they will just do the same "research" over and over again where they test people with useless and badly constructed questionnaires, will treat sick people with online and/or group CBT, and will compel patients, particularly those on benefits/welfare that they need to exercise, even though it makes some sick people worse. And if they don't get better they obviously weren't committed enough, and can have their benefits withdrawn because they are lazy.

I'm not on benefits, but I worry a lot about anyone who has to survive on them, and the systems behind allocating benefits appear to have been getting more and more sadistic over the last 20 - 30 years.

[HowNowWhatNow in reply to humanbean]

humanbean - I would agree with your realism if I had to bet money on the 10 outcome: I’m not sure it is pessimism, sadly.

Since becoming hypothyroid I have repeatedly been told that the origin of X symptom or other could be “stress”. The attitude being that my doctor can then wash my hand of me. Tell me which person is not under some kind of stress? But if the person says “yes”, the doctor consider their job to be done.

[humanbean in reply to HowNowWhatNow]

I was told for years that I was anxious and depressed, and I was prescribed many different anti-depressants and other addictive pills over the decades.

The anxiety disappeared completely and the depression mostly vanished when I repaired my extremely severe iron deficiency by myself.

[HowNowWhatNow in reply to humanbean]

Phenomenal example of what medics should not do, in action.

[HowNowWhatNow in reply to humanbean]

I provisionally diagnosed myself with a new condition recently, after two years of various problems and no diagnosis. Went to hospital yesterday for an investigation to determine whether I have this - turns out my (auto) diagnosis was correct.

Maybe .. listening to patients is a good idea?

[Tythrop in reply to HowNowWhatNow]

I'm amazed they accepted you were right . They don't like to accept that patients may know what they don't know

[Underactiveclare]

This is so true. I was recently prescribed anti depressants for feeling low. They made no difference because it’s my thyroid and vitamin levels. I wouldn’t know that without the amazing support and guidance from this group.

[HowNowWhatNow in reply to Underactiveclare]

How are you feeling now?

And are you also taking the anti-depressants?

[Underactiveclare in reply to HowNowWhatNow]

I have gone back to my lower dose of antidepressants. I’m experiencing a lot of physical symptoms currently. Just waiting on a home blood test and start taking b12.

[HowNowWhatNow in reply to Underactiveclare]

Good luck and keep us posted

[Jazzw]

I’ve been here over a decade already (switched user name at one point) and the advice provided back then was similar to what we get here now, just a few minor tweaks as we’ve learned a bit more from people like Diogenes.

I’d like to think things will improve in time but there’s not a lot of sign of it—if anything, things are slightly worse at the moment, with more “paint by numbers” GPs and so-called Endos than ever.

Luckily, this forum does exist. Thanks to all of you for your advice and support and determination. xx

[HowNowWhatNow in reply to Jazzw]

So the advice being given here was broadly the same 10 years ago.

And in this time the NHS .. hasn’t changed its views or guidelines to accommodate what we know and what patients say? Or has it progressed at all?

[Jazzw in reply to HowNowWhatNow]

Unfortunately, I’d say things are worse. If anything, I’d say patients were being gaslit more than ever that it’s “all in their minds”. If thyroid blood tests are in range, the patient is told it can’t be their thyroid and that it must be something else.

Plus it used to be that at least men with hypothyroidism got taken seriously (for women, it’s nearly always mistaken for something else, at least to start with, be that PMS, post natal depression, depression in general or menopause). A decade on, men too are told it’s depression all too readily.

I don’t know whether the recent trend to not even see patients face to face is worsening things. Possibly. But it’s more the fact that doctors these days seem to view blood test results as infallible instead of as an indicator.

[Miffie in reply to Jazzw]

I have to agree entirely with your comments. I was diagnosed sixty years ago and have witnessed the care for hypothyroidism go downhill over the decades. I find it steadily worsening. Every time I think it has reached rock bottom something happens to indicate otherwise. I recently had bloods and an ecg done at my surgery ahead of my ‘chronic condition review’ as the surgery now calls annual/ six monthly reviews or those who have conditions which require monitoring. My thyroid results were grim for the second time in six months and the doctor who reviewed them noted ‘needs to speak to a doctor’. I called for an appointment to be told if GP hasn’t said urgent it isn’t. ( It seems they always say urgent or routine topsoil if nether said then it’s definitely routine. They don’t make errors like forgetting to state urgent. I assume they do forget to state routine). I already had an appointment with the diabetic nurse who said not her remit phone reception fir appointment . I about my ecg. ( it’s classed as abnormal on the printout copy on my medical record). Her happy reply don’t worry a GP will look at it and get back to you. No it’s not been looked at and the last one three months previously also abnormal was only looked at when I asked the GP about the result. He had the decency to look embarrassed he hadn’t checked up and went on to discuss the abnormality and what it meant.

It’s not just care for thyroid patients that’s gone downhill it’s everything. The surgery I attend has a Facebook page and regularly tells patients they can see a GP online anytime using the Livi app. No need to contact the surgery!

[HowNowWhatNow in reply to Miffie]

I’m so sorry. This is abysmal and the kind of treatment that suggests you should change surgeries.

I know someone in her early 80s and un your position. She has been a cardiac patient since she was young but has not had a cardiac clinic appt since pre Covid. She recently had to go to A&E - with heart failure - because all her requests for a GP appt had been ignored for weeks, and she got suddenly worse.

Please complain to PALS / the GP equivalent.

[Zephyrbear in reply to Jazzw]

Anthony Weetman and his “somatoform” diagnosis has a lot to answer for!

[HowNowWhatNow in reply to Jazzw]

The one doctor I know well - my sister - says online medical care doesn’t work, in her field anyway. Patients don’t always know how ill / well they are and you need to see them and make physical observations.

This has been my experience, too.

Interesting that when it comes to children, doctors still mainly want to see them in person.

[RedApple in reply to HowNowWhatNow]

Your sister is absolutely correct of course. Unfortunately, when it comes to thyroid disorders, the vast majority of GPs don't recognise it even when they see it. Partly because they spend too much time looking at the computer screen instead of the patient, and partly because they don't even know what a hypothyroid/hyperthyroid patient may look like. A mild case of hypo/hyper may not show obvious visible signs, but listening to, and believing the patient is also a good idea. e.g. Understanding that depression isn't only in the head and is frequently caused by physical disorders is vital.

[HowNowWhatNow in reply to RedApple]

I am helping out a friend who is dealing with social / children’s services and they also are adopting this dangerous new paradigm, that looks like:

1. If we don’t think your problem is (stupidly) simple, we will tell you it’s “complex”, meaning it’s not our problem / we can do what we like and stop listening to you and involving you

2. If in doubt as to how to deal with an intelligent woman whose opinion you disagree with but who obviously is motivated by all the right reasons (ie. you can’t blame / write off in a direct way) then a) gaslight her and b) ask her if she needs counselling or some other mental health support

3. Listen to and believe men, even when you are told by several other reputable sources that they are lying (this last one is not 100% analogous to thyroid conditions but goes to explain some of why this mainly female health condition is met with such indifferent to poor care.

We should all be very scared by the path to non-empathy we and our friends, children, grandchildren, neighbours are embarking on. And call these steps out when we see them.

[HowNowWhatNow in reply to RedApple]

My sister’s observation has been brought home by the realisation that many of her patients are extremely ill, some terminally, and don’t know it. She is in a field of medicine that involves seeing patients who can become extremely unwell, but generally once they come into the system and are on the doctors’ radar, they are closely observed enough (through blood tests, urine tests, height and weight, scans and other markers) that a) you the doctor know roughly how they are and b) you the doctor inform the patient. Over the last 3 years, a) and b) have not been happening.

This deterioration in health outcomes will come out in the death rates soon. But because so many other things are going wrong in the NHS, caused by the lack of funding and investment and then Covid, it won’t be immediately apparent that lack of face to face care, along with lack of basic bread and butter tests (such as all the above) played a major part.

[elwins]

❤️🥰 if my late Mum had not pushed nearly 70 years ago I would never have been told I had a under active thyroid. She was just told she was a fussing Mother. So has much changed over the years.

[HowNowWhatNow in reply to elwins]

A positive note!

How old were you at diagnosis? And how did the doctors diagnose / test for thyroid issues then and what treatment were you put on?

[Miffie in reply to elwins]

Gosh that’s surprising. I was diagnosed 62 years ago and the GP knew by looking at me and symptoms exactly what was needed. I was immediately put on ndt, everyone was pre levothyroxine being pushed. No family history as I was adopted GPs were trained very differently then.

[elwins in reply to Miffie]

thanks for reply, it was left to my late Mum to push as I said, she just had a instinct that something was wrong and she was not being fobbed off by the family GP. Seem to think I saw a consultant privately who sorted me out, but cannot remember after so many years.

[Miffie in reply to elwins]

That’s what I found unusual as GPs were diagnosing hypothyroidism without blood tests as TSH etc had not been ruled out. It was incredibly unusual to not get a diagnosis based on symptoms. Private consultants very very expensive in those days. Fortunate your family could afford private health care and prescriptions for you. I wonder how you were moved to NHS care from private . My mother paid for some private surgery and follow up as she was struggling somewhat. Her surgeon was one of many cousins who were consultants or GPs. All follow up was private as NHS did not take on cases from private. Maybe she was unlucky . I found your history very interesting.

[HowNowWhatNow in reply to Miffie]

Would you mind giving examples of the symptoms that got you a hypothyroid diagnosis without blood tests, way back when? And the types of observations carried out: Did you have reflex tests? Temperature taken? Etc.

My own GP told me I did not have Hashimoto’s after my thyroid numbers had come back showing extremely high thyroid antibodies, as well as raised TSH. That fact denial really confused me. I had read all about Hashimoto’s and seen my thyroid numbers and could not understand (I was new to gaslighting) why 2 + 2 did not make 4. Of course I was right, but it took a while for them to admit it.

[Miffie in reply to HowNowWhatNow]

General lethargy, feeling cold, puffy face, eyebrows starting to shrink on utter edge, weight gain or no reason . I have always had a low body temperature, even as a child. Reflexes may have been tested. I don’t remember much as I was 10. (Unlike you I didn’t do any real research into thyroid disorders until I was older, some years after diagnosis , then I studied the medical text books in the university library avidly. I wouldn’t have known what to expect when diagnosed). My mother explained symptoms to the GP as I was so young. I had some blood tests to rule out other causes. I understood there was no blood test for hypothyroidism in the UK in 1961? Certainly no one I know diagnosed between 1950 and 70ish was given such a test. I find it really interesting and new knowledge to learn elwins was given blood tests. I don’t have Hashimotos, I had radiation therapy for a facial birth mark as a baby and on into early childhood and doctors suggest this caused my hypothyroidism.

[HowNowWhatNow in reply to Miffie]

thank you

And did you originally / usually have care and advice from an endocrinologist?

[Miffie in reply to HowNowWhatNow]

I do believe I have told you my story. It’s in my bio as well. Beginning to wonder why my medical history is relevant to you 62 years after the event. Not wanting to be rude but curious why details need clarification .

[HowNowWhatNow in reply to Miffie]

Thyroid disease was treated and diagnosed very differently in the recent past.

When I wrote the original post above I set out my hope that things will become much better in the next 10 years.

We don’t have any evidence or indication from those with sway that it will be. So my breezy remark is as likely not to come good as it is to be a shoo-in.

Whereas 30-40 years ago, and more, people (as your story corroborates) did have a full hearing when they went to see their doctors, now our doctors are only interested by the numbers. It’s interesting to know how it was treated in the U.K. pre-1980s, or whenever it was that TSH numbers became God.

I had a diagnosed thyroid condition for 7 years before I saw an endo, despite asking to see one on several occasions. My GP care was inadequate and so eventually I went privately. I have often wondered why they made it so hard to see one, and whether this was always the case.

[HowNowWhatNow in reply to Miffie]

Apologies if you found my questions too probing. Am interested in the history of thyroid care and what it was like to live through it changing.

I am always interested by those sections of medical research charities that contain testimonials - they tell you so much more than the history as relentless progress sections of those websites. Please don’t share more info if you’d prefer not, of course.

[elwins in reply to HowNowWhatNow]

I think then we either had private health care with my fathers job or my grandparents paid.

[HowNowWhatNow in reply to elwins]

Thanks

[elwins]

I was about 6 years old, my Mum thought I might have been born with an under active thyroid but she could never prove it. They put my symptoms down to other things like tonsils which I had out when I was about 3 years old. I was lucky I had good parents. Cannot remember much about it, was just told medication is for life. No annual check ups done then, stayed on the same dose till I was a teenager, then found out I needed to increase my dose quite a bit. A thyroid registrar was eventually set up by the local hospital and you had a reminder to get a annual blood test, this was eventually given to the local doctors to deal with, so since then mine is checked one a year with a annual blood test. No wonder I went through my school years being told I could do better on my reports it was because my thyroid medication was not correct.

[HowNowWhatNow in reply to elwins]

Thanks for explaining. What was the medication given to you? Was it levothyroxine?

[elwins]

cannot remember but think it was not levothyroxine in those days. Think it was produced using something from an animal. But I am afraid I cannot remember, just had a tablet to take each day.

[HowNowWhatNow in reply to elwins]

Sounds like NDT, from pig.

This is what the advice on NDT is now:

sps.nhs.uk/articles/review-...