Simplicity my A***

[LindaC]

Many of us with thyroid issues know this can often mess with our metabolism, temperature and heart rate.  Recalling the likes of [Prof] Weetman et al, on how SIMPLE it is to treat the thyroid, I just stumbled upon this on a little info thing passing my way on yahoo: first few words are...

"If there's one thing we know for sure about the thyroid, it's that shit's complicated.

The butterfly-shaped gland in your neck is normally responsible for producing hormones that help regulate your metabolism, temperature, and your heart rate, among other things."

refinery29.com/thyroid-prob...

[Twinkle1964]

Oh yes Linda C  and that's me right now. I've been hypo for 6 yrs now and it wasn't until 2 yrs ago going through the menopause that things really started going wrong. Very slow heart rate, sweats on and off all the time and tired and achey joints. Sometimes I really struggle getting out of bed. Levothyroxine been put up and it has made a bit of a difference but honestly once you go through the menopause that's when things really start going wrong. I'm post menopause now! I'm hoping it doesn't last much longer!

[posthinking01 in reply to Twinkle1964]

Hi Twinkle sorry to hear you are feeling so bad.............know where you are coming from............not many people realise but as the menopause approaches and the ovaries downgrade it is the adrenals that need to pick up the slack supplying the estrogen you will need now the ovaries have stopped producing and if you adrenals are low and can't supply then you are experiencing the results of that - aching joints - mine were so bad ..........and lack of energy - I would suggest you get your sex hormones tested................if the NHS do it - doubt it.

[LindaC in reply to Twinkle1964]

Yes Twinkle 1964, I was past menopause when the worst of it came out [I'd had signs/symptoms for decades... and through my largely undiagnosed family] so I do understand when you come through the other end of the menopause how it worsens.  Oh, I do hope you feel that you've gotten through the worst of it soon because the menopause does seem to both 'mask' and make worse these hormonal issues.  Do take care and be well xx

[Twinkle1964 in reply to LindaC]

Hi Linda so do I. I used to have so much energy and loved to try new things but these last  couple of years have been a nightmare on and off. Take care x

[LindaC in reply to Twinkle1964]

I know, I used to be able to 'take on the world' [and did ] this is dreadful and, worst of all, not to be believed... look after yourself xox

[Eddie83 in reply to Twinkle1964]

The primary reason you are suffering, is that the average MD can barely get to first base on bioidentical hormone and nutritional therapies.

[MarsBar12]

Yes, but further down it reads - "treatment is fairly straightforward"

I think there's lots of us that would disagree with this!

[waveylines in reply to MarsBar12]

Given the research that is now coming out showing there are multiple feedback loops to maintain our homeostasis and any fault in anyone of them can affect its equilibrium.....and thyroid as a result....meaning the TSH to FT4 thyroid is NOT a linear one as assumed for many years, I think the medical fraternity will have to eventually wake up that this IS a highly complex system that is not necessarily easy to diagnose or treat.....doing it by TSH levels WILL not work. Many of us hypothyroid patients know that already only too well to our cost!! 

[LindaC in reply to waveylines]

Yes waveylines, I had no clue about the thyroid gland until I did   Considering just what it does for us, out of whack hormones can 'disable' people in ways that only those of us who "know" can speak of, the complexity is self-evident to us.  Yes there is as you say, thankfully, research out there and of course one weakness in a link of the complex hormonal chain greatly impacts other hormones.  But one hormone impacting another is surely basic stuff that any of us could reasonably expect doctors to know, even without reading newer research

I think I've covered with MarsBar12 that treatment and complexity - although highly interconnected - are not the same.  Many diseases can be diagnosed but treatment remains problematic in many disciplines of medicine.  We get it both ways: slapdash_be_off_with_you_dear non-diagnosis and generally rubbish treatment [in the main 'they' are doing their utmost to have their T4 fits all as the only option by eroding away at alternatives].  At very least diagnosis, as other difficult illnesses, could be acknowledged as it was 100 years ago.  When it comes to us, they seem not to even use the 'tick box' method of signs/symptoms in favour of blood tests which may or may not bear much relation to our own individual issues    Best wishes wavey x

[LindaC in reply to MarsBar12]

Oh yes MarsBar12, I would also kind of disagree with that but treatment COULD be fairly straightforward, if our vits/mins were checked along with any other tests - including sex hormones, adrenals and cortisol - then medics actually listened to our signs/symptoms [an A4 sheet would do] and our family history.  How fairly straightforward does it get?  Oh, that would be too much for them?  So too is the long term illnesses wreaked by out of kilter hormones, then the NHS has to pick up the cost later, along with the [in many cases] unnecessary suffering that many of us have.

How about checking our thyroid levels at strategic points in childhood right through critical points in life to know our baseline and how our hormones affect us?  Some might say that is too much expenditure... really!?  To avoid illness long term, I don't think so.  Proactive is always better than reactive, especially for us who are often so very poorly neglected, then scorned to boot when medics have no clue as to our 'baseline' thyroid functioning. 

Point taken but this just caught my eye when shutting down last night, like a red rag to a bull... that some little 'magazine type message' readily sees the complexity of the thyroid, when arrogant doctors dismiss it and us. Be well xox

[shaws in reply to MarsBar12]

It IS very straightforward if you are an Endo/doctor who firmly believes that the TSH is the only level to take into account, whether its high, low, or middle of range. Anything else is down to some other problems, i.e. family, work etc. so you will be given 'another' medication to keep you quiet and send you on your way - abandonded.

healthunlocked.com/thyroidu...

[waveylines in reply to shaws]

Oh yes Shaws that's certainly what happens and of course there is always the wonderful cop out -it's all in your mind......the biggest insult to patients of the lot if you ask me 

 But am encouraged by the new research showing increasing complexicity.....maybe eventually they won't be able to be so dismissive. Of course if you insist on doctors doctoring by numbers and following flow charts what can you expect!! Haha!! When and if they ever absorb what research is unfolding do you think they will invent a 3D flow chart to demo all the interrelated links in multiple feedback loops they are finding in our bodies 😊😊 It would be fun to see them try....you know those bods up in NICE .....joking of course ...though no doubt some idiot in the higher eschalons in some disconnected medical body will try.....they do seem determined to take the art form out of medicine...

[LindaC in reply to waveylines]

I do hope so waveylines, it only takes one 'bright spark' and the rest might follow to be seen to 'know'. Yes 3D would be great; sure some would just play but somehow it might finally  dawn.

Thank you for being encouraging on our 'complex' issue   

[waveylines in reply to LindaC]

Oh LindaC I was really joking!! 😊😊 They could never devise such a model -the reason behind that is in a very complex system there will be so many potential points of failures and combination points of failure that such a model wouldn't never be able to cover all the potential system failures and their consequences!!

 Sometimes doctoring has to be an art form

 -the systems that computers provide have linear sequences. Can't see that working in a system with potential for multiple failure break down points in multiple layers that all sort of interrelate.....resulting in a same set of  current medical test results (based on the crude blood assessments they currently have)  -even if the treatment ends up being similar. Not sure a computer would computate it? Apart from the fact they're are light years away from finding tests to test the different potential failure points in a highly complex system......the mind boggles at how they would even start to do a 3D painting by numbers diagnostic computer prog for GPs.... 😊😊😊 

Far better some old fashioned but effective clinical assessment with patient feedback that does already exist & WAS working pretty well back in the 60's but seems to be rarely used these days......cost effective too if doctors are trained in it properly! Lol....

[LindaC in reply to waveylines]

Oh waveylines, no joke... and of course this will at some point become reality... the foreseeable problem is that doctors are likely to be unable to understand.  Where I have scant faith in some 'maze dull' doctors, this kind of reaseach is certainly within the realms of AI and science; they are perfectly capable of dealing with such complexities.  The question whether doctors could assimilate this is quite another question but their capability is, for me, a bit of a joke.

Of course 'doctoring' has to be an 'art' and here, it would seem, now lies the problem.  Many older forms of assessment are way better but the mode of teaching/learning has also 'lost its way'... medicine - at least in these complex, highly individualized areas - is badly failing patients and medics alike. 

[waveylines in reply to LindaC]

Oh so true LindaC.....so very very true....

[shaws in reply to waveylines]

Research - scientists work hard figuring things out yet those who should be interested are uninterested and many appear not to take notice of the patients' clinical symptoms (what are they? they might ask).

[waveylines in reply to shaws]

Too true Shaws -that's why I've noticed the art of doctoring has died a death -only the old school docs seem to still have any element of it left.....only the researchers are still trying. It's a sorry state of affairs. The world of thyroid seemed to be enmeshed in dogma imposed on the practioner that is breath taking illogical with scant regard to anything remotely investigative or even plain good practise. No wonder so many of us are forced to do our own doctoring with much better outcomes then those strangled by those postulating frank arrogant breath taking nonsense! 

[LindaC in reply to waveylines]

Worse than this is the demonising of those doctors who were/are still capable of good practise... it is those sinister aspects that leave the foul taste.

[crimple]

I'm tempted to print the article or something with similar info and post it anonymously at GP surgery! Waiting for my blood test results for annual review. Practice nurse insisted I have cholesterol test, I told her whatever the result I would not be taking any statins. What a surprise they are only testing TSH!! but they will do B12, ferritin and folate. I will be doing a proper blood test via Blue Horizon!

[LindaC in reply to crimple]

Oh crimple, check out on here first if you are considering taking anything with you because there are excellent references/articles to take with you. My post was a little tongue in cheek that an online 'women's mag' type article readily acknowledges the complexity of the thyroid, when that is not what we encounter in our lives.  Yes, see what Blue Horizon discovers - it is dreadful that many of us are treated so shabbily.  Take care and be well xx 

[crimple in reply to LindaC]

Thanks LindaC. I have today been in touch with TUK and they are considering something for GP's but need to get wording right. Apparently people in another group(and they are confused with TUK-bad news) do write but only manage to annoy the medics, so I will hang fire and see what TUK suggest.

[LindaC in reply to crimple]

crimple that sounds great - something needs to happen somewhere: how we are treated can often be appalling.

Best to you on that, please let us know of any outcome.

[Hillwoman in reply to crimple]

Are you referring to TPAUK? 

[crimple in reply to Hillwoman]

don't know who it was organizing bombarding GPs re thyroid treatment, I was quoting from item I read.

[LindaC in reply to Hillwoman]

Hillwoman: where did that question come from??

[Hillwoman in reply to LindaC]

TUK and TPAUK seem to have a fractious relationship. I wondered if Crimple was aware of the finger-pointing that appears sometimes on thyroid forums. 

I've no idea myself who is responsible for the letter-writing drive, but I don't think it is necessarily a bad idea. Other health charities have done it to good effect.

[LindaC in reply to Hillwoman]

Oh, I am aware of that one   It seems like crimple gave an explanation and people seem not to know of historical stuff, when all they're after is info. 

A letter writing drive seems essential. I am aware that TPAUK used to have kind of pre-set letters for us to use.  Maybe they still exist?  Something certainly needs to be available for people to take to GPs/'consultants', who seem to be riding more roughshod over patients than ever.  Something certainly needs to happen!

[Hillwoman in reply to LindaC]

TPAUK do indeed still have pro forma letters available to their forum members. Thinking of using one myself...

[LindaC in reply to Hillwoman]

Right, thanks for that.  Could be very helpful if used as a template to then fit in  own details?  Just wish there was a concerted campaign or something... been tried before.  It really can't go on much longer because 'they' seem to be further eroding into patient [what little they have' rights

[Bluedragon]

Still shows a high level for being normal rather than at about 2!

[LindaC in reply to Bluedragon]

Yes Bluedragon, the point was merely the complexity of thyroid functioning. Apart from the odd exception, I have little to zero faith in any of them Blood testing has clouded their judgement on clinical practice.  Best wishes xx

[shaws]

Thanks LindaC it was an interesting read. 

There are two points within it (the first I agree with and the other disagree) though which I think are very important. In the UK it's rare that your T3 levels are checked. Many GPs say it's unnecessary and the TSH alone is sufficient.

1. it's a good idea to make sure your doctor is doing more than one and keeping tabs on your T3 and T4 levels as well.

2. Once you're diagnosed, though, treatment is fairly straightforward

[greygoose in reply to shaws]

Yes, point number two hit me in the face like a wet lettuce! what? Who are they kidding! Obviously said by yet another doctor that doesn't know very much about thyroid! 

[LindaC in reply to greygoose]

Yes greygoose... I think I've covered above about your exclamation too   Apart from those "Thyroid Greats", how many of them do know much about the thyroid?  I was drawn to the complexity issue, on way to bed and didn't think the post through   Be well xx

[greygoose in reply to LindaC]

You too, LindaC.

[LindaC in reply to shaws]

Shaws, it was my shock at a 'little passing by my eye article' actually stated the complexity of the thyroid [which of course we all know very well!] that caught my eye.  A good read to me [and you ] is the wonderful John Lowe et al, but seeing that article and remembering comments made by Prof Weetman...

Of course the thyroid is complex yet still can be diagnosed without gross overreliance on blood tests [ranges determined via the surrounding population].  Given the treatments in existence - which need to be made available - including vits/mins, the issue is surely one of trial and error?  Yes I agree treatment can be fairly straightforward with all of the other building blocks in place. Best wishes shaws! xx

[Eddie83 in reply to shaws]

Yes, "treatment is fairly straightforward".   Ironic.   That explains perfectly why, from the time of my initial diagnosis of hypothyroidism, it took 15 years to feel decent.

[Musicmonkey]

When I told the GP at my surgery (who needless to say I refuse to see anymore) that thyroid issues are complex, he became very patronising and said 'No, it is quite simple....' and proceeded to draw me a diagram.

When I showed him my list of continuing symptoms, he screwed up the paper and threw it back at me across his desk.

When I persisted, he asked me which one of the symptoms I would like him to treat, offered me anti-depressants and referral to the local mental health service. I didn't pursue this - I am a counsellor, and I am not saying that counsellors don't need counselling, but apart from one (low mood) all of my symptoms were physical!!

[LindaC in reply to Musicmonkey]

That is simply appalling Musicmonkey!  They never cease to amaze me with their arrogance! What with them studying the equivalent of an 'A' level text book in med school on psychological matters - and clearly no training worth a cockroach on communication skills - their presumption that 'It must then be depression or whatever their lack of knowledge leads them to falsely believe' is anathema! 

Of course, they cannot test for this supposed 'chemical imbalance', which has them treat millions of people every year, so how come they can dismiss someone with several signs/symptoms of hypothyroidism on the basis of blood test [which is known to have flaws, not simply the construct of the test but with huge individual variation]? 

I seriously now believe that medicine in several such fields has had its day... and for some of them, in my book, that couldn't come too soon.  As they are meant to have taken 'The Oath'... good old Hippocrates would turn in his grave: "As to diseases, make a habit of two things — to help, or at least, to do no harm".  How many of us feel very much harmed by medicine today?  Not having an answer is one thing, but their contempt is quite another.  You take care and be well xx

[Musicmonkey in reply to LindaC]

I tend to agree Linda unless there is a complete shake up and 'shake down' of Big Pharma.

For a moment there I thought you were actually writing a book!! That would make a very interesting, but devastatingly sad read if based on stories reported here on this forum.

Sometimes I despair reading of people's stories and even feel I am lucky to feel as relatively well as I do, despite feeling very often that I am only living half a life and that it is more of an existence rather than a life lived to the full.

[LindaC in reply to Musicmonkey]

Musicmonkey, totally agree re Big Pharma but still no reason for docs to be so blatantly, sneeringly cruel to patients, 'as if' we turn up there [last place I ever want to be] to whine.  Hey there are a few 'books' in various shades of progress in particular the one that led up to my hypothyroidism 'coming right out in all of its glory'; also my Family [Horror] Tree where most have been ignored out of hand only to die with quite awful illnesses.

I absolutely agree, I know what this has done and continues to do to me [I get a reprieve when it warms up] but sometimes sit crying reading stuff from thyroid people but more so I get angry. I too consider myself lucky but yes, a live now half+ lived in comparison.  Hormones are strange beasts; stuff might finally get into cells and there may be improvement along the line... somewhere, but we're not getting anywhere near the medical care we all deserve in the 21st Century.  Take care, be well x

 

 

[Pinkpeony in reply to LindaC]

LindaC

I just wanted to say isn't it wonderful being a woman !

All the c**p we put up with periods , childbirth and the good old menopause and now we are 10 times more likely than men to have thyroid problems.

If God exists which I seriously doubt  , it is most definitely not a woman !!

[LindaC in reply to Pinkpeony]

Gotta love you <3  Be well lovely, I'm with you too

[LAHs in reply to Musicmonkey]

Good point Mm, "half a life". I do not feel particularly ill, I have most of my physical problems fixed but I have wondered for a long time how I could explain my problem. My lawn needs mowing and it used to be no big deal, I even used to enjoy doing it, but now I have no drive to even get up from my computer or sofa. Now multiply that by 50 other similar things and that is my life now, just half a life. Thanks for pointing that out.

[Doodeet in reply to Musicmonkey]

What a jerk". You should report that doctor who likes to throw paper wads at his patients. Seriously. 

[Eddie83 in reply to Musicmonkey]

Sounds like your GP is dysphoric.   Perhaps HE has a thyroid problem.

[LindaC in reply to Eddie83]

I suspect several have quite serious mental health problems... I do a good 'appraisal' at low cost

[shaws in reply to Musicmonkey]

Well, musicmonkey, I'd say that people who say that treating a dysfunctioning thyroid gland is 'simple' I would say that it is them who are 'simple' because they don't even know the basics.

[Eddie83]

For about half of the population with thyroid problems, "simple treatment" is mutually exclusive from "correct treatment that makes you feel well".   Apparently Fink stated "Once you're diagnosed, though, treatment is fairly straightforward".  Bullsh*t!

[LindaC in reply to Eddie83]

No argument from me Eddie83 - they've lost their way and any clue along with that - I feel [deeply] for all of us   Take care and be well xox

[jamalka]

Lord have mercy on "hypos'"