This episode illuminates what is wrong with med... - Thyroid UK

Thyroid UK

137,936 members161,765 posts

This episode illuminates what is wrong with medicine, even today!

diogenes profile image
diogenesRemembering
59 Replies

I read with some anger and dismay an article in today's Sunday Times which showed that despite the medical world being aware of the dangers of valproate treatment for epilepsy in pregnant women on the physical and mental future for the baby, since 1973 this danger has not been properly recognised and 20000 babies have suffered from various malformations and malfunctions. The tardy recognition of this scandal will result in the danger being recognised and at last dealt with. However I was struck by the indignation about this compared with the silence about thyroid function mistreatment in the adult. Babies are cute -they are little lives to be cherished. They are also helpless; they are "done to" rather than "agree to be done to" as is the case of an adult. It's one of the reasons that eventually their mistreatment is illuminated as a new horror from authoritative no-question medical mistreatment and action is taken. Thyroid patient suffering is mainly an adult problem and is not often immediately dangerous, but destroys wellbeing nontheless. Thus, the same mistreatment of thyroid problems, especially hypothyroidism treatment, can go on in the same authoritative unquestioning way, based on a similar lack of understanding or subsequent inaction. Although the patient has a voice, the response medically is just like that for babies - one must be "done to" rather than "discuss with". The parallels are obvious, as is the difference between the outcomes. One thing is certain though. This example is a powerful example of what happens in too many parts of medicine. Its tragic outcome is one factor that keeps at least me and our team to try to avoid another, however longstanding and gradual the change may be and however difficult to overturn.

Written by
diogenes profile image
diogenes
Remembering
To view profiles and participate in discussions please or .
Read more about...
59 Replies
Musicmonkey profile image
Musicmonkey

Thanks again diogenes for the work you and the team do. It must be soul destroying at times, but I for one am more grateful than I can express for what you do to further the cause of more effective diagnosis and treatment of thyroid disorders.

RButus profile image
RButus

Well said, Diogenes...you must feel like you're trying to make an ocean liner do a handbreak-turn :-(

TSH110 profile image
TSH110

Well said!

helvella profile image
helvellaAdministratorThyroid UK

In the specific case of Sodium Valproate, the Summary of Product Characteristics is very clear.

mhraproducts4853.blob.core....

As is the Patient Information Leaflet. But it surely has to be the prescriber's responsibility in the first place?

WARNING

Valproate can seriously harm an

unborn child when taken during

pregnancy. If you are a female

able to have a baby you must

use an effective method of birth

control (contraception) without

interruptions during your entire

treatment with Sodium Valproate

Tablets. Your doctor will discuss this

with you but you must also follow

the advice in section 2 of this leaflet.

Schedule an urgent appointment

with your doctor if you want to

become pregnant or if you think you

are pregnant.

Do not stop taking Sodium Valproate

Tablets unless your doctor tells you to

as your condition may become worse.

If you are a parent or caregiver of a

female child treated with Sodium

Valproate Tablets you must also read

section 2 of this leaflet carefully and

contact your child’s doctor once they

experience their first period.

mhraproducts4853.blob.core....

But these warnings are as it is now. I do not know how long they have been issued.

As the thalidomide tragedy unfolded, the medicine itself was effectively banned. (Though too late for many.) The rationale appearing to be that the medical establishment couldn't guarantee it not being prescribed to those who might become pregnant.

More recently, thalidomide has again been used for some patients.

I completely agree that thyroid treatment is all too often done from a position of ignorance and indolence.

I believe that we have not moved on from a TSH component in the heel-prick "panel" of tests. While there have been papers questioning whether FT4 is a better test to use. And about the timing from birth, which some claim offers only a narrow window in which it is reliable - and soon enough to avoid any impact should the baby require thyroid hormone medicine.

LindaC profile image
LindaC in reply to helvella

Absolutely! Thank you for this. What a mess we're in! Medicine, especially chronic, needs to be dismantled and put back together again... getting rid of the pompous prigs, seemingly relying on status and not enough else.

Fruitandnutcase profile image
Fruitandnutcase in reply to helvella

No wonder people have no faith in their doctors! How could any doctor possibly prescribe a drug like that to women of childbearing age knowing the possible outcome? Talk about patients needing to read the PIL to familiarise themselves with possible side effects - their doctors need to do the same.

Coppernob profile image
Coppernob in reply to Fruitandnutcase

PIL is frequently omitted, as I understand it. And sodium valproate is still being prescribed without warnings.

kittyelen profile image
kittyelen in reply to helvella

They have been known about for some years I was put on this in 2008 and advised not to fall pregnant by accident, and warned of the dangers. I was moved to lithium due to side effects/ I replied saying from a certain year there have been strict guidelines they no longer prescribe this to women of child bearing age (Unless it is a last resort/ certain circumstances where there is no other option etc)

The poster may not be fully aware of this, but the dangers have been known for some years it's going back further in the past when this med was used and it did cause birth defects.

tattybogle profile image
tattybogle in reply to kittyelen

The Sunday Times article referred to in the original post, and the one from the Independant below , would seem to be saying it has still been happening. independent.co.uk/news/heal...

"According to the latest figures, 222 pregnant women were exposed to sodium valproate in the period 2020-2021 the Medicines and Healthcare products Regulatory Agency (MHRA) said.

They said rates of exposure have been declining since the Pregnancy Prevention Programme was introduced, and rates in 2020-2021 are “substantially lower”.

Mr Hunt said sodium valproate was “a major risk to patient safety” as he called for it to be banned from being given to pregnant women."

kittyelen profile image
kittyelen in reply to tattybogle

You already replied that to me :) Yes I know if it is still happening that's awful and if women were to have a baby that would be a massive claim to be made..... there has been clear guidance since 2018 so those doctors are negligent if not following them.

It's not a nice med anyway, made my hair start to fall out. In psychiatry as far as I am aware doctors don't use this as much nowadays as a mood stabilisor. Maybe with epilepsy there are not as many alternatives, it's good there is now more awareness I just didn't get the post about how it links to thyroid meds apart from Carbimazole which is similar and you are told not to get pregnant on it.

tattybogle profile image
tattybogle in reply to kittyelen

lol . For a moment there i thought i was loosing the plot or had hit 'delete' instead of 'reply' , but now i realise your other reply is lower in the post ... it all makes sense.

tattybogle profile image
tattybogle

ye gods .. how is it even possible they didn't effectively sort out something so apparently simple and important to implement as "make sure nobody pregnant/potentially pregnant is taking this" ?

Not surprised it has wound you up,

You're right ... the failures of thyroid treatment in rather less cute adults, who's 'life potential' is never the less going slowly, and unspectacularly down the pan... is rather harder to get on the front page , because the problem /scandal manages to be 'too boring' and 'too complicated' at the same time.

... thanks for your persistence in unravelling the 'too complicated ' part of the problem.

DippyDame profile image
DippyDame in reply to tattybogle

Well said tatty!

DippyDame profile image
DippyDame

Thyroid patient suffering is mainly an adult problem and is not often immediately dangerous, but destroys wellbeing nontheless.

Thank you diogenes !

Wishing you and the team every success because it feels as if there are very few people, who should understand this, that actually do

Being in that place can be a dark and lonely experience

I suspect that had I been correctly diagnosed and treated in my twenties then I would not have been subject to the many and various "symptoms" which medics failed to either explain, or resolve.

I may have discovered, based on my medical history and that of my parents, that an as yet undiscovered genetic variant was the cause...as a geneticist one suggested to me

I may not have developed thyroid hormone resistance and consequently cellular hypothyroidism

The damage done by under/no medication over decades has left me with a diminished quality of life.

It has had an impact on my precious family...and it cost me my career.

My body felt as if it was slowly shutting down.

I am one of the lucky ones however!

Barely able to function and realising the severity of my situation, I found TUK

This forum gave me the support and confidence to find the answers to problems that medics tried to tell me did not exist.

Just a pity that had to be as I entered my 70s!

Like you I feel anger and dismay...

No longer for me ( and my family) but for the many people out there, quietly suffering ( and dying) behing closed doors because of neglect and ineptitude.

In contrast-

The tardy recognition of this ( epileptic) scandal will result in the danger being recognised and at last dealt with.

Why was this missed/ overlooked for so long!

"Valproate can seriously harm an unborn child when taken during pregnancy."

Another case of neglect and ineptitude!

I rant at length here - at risk of boring members by my repitition- about this thyroid scandal.

The only answer I can see, is for the (thyroid) medics on their high perches to climb down, admit that they have been wrong for decades, swallow their pride and put their patients first....and crucially, to listen to the (thyroid) scientists.

Your work is vital and possibly more appreciated than you will ever know.

It should not take a tragedy to happen first!

diogenes profile image
diogenesRemembering in reply to DippyDame

In a particular way I am observing an experimental result of observation of 50 years longterm treatment of my wife on T4 only (150 now 125mcg). We've had to educate our GP to accept that lifetime undetectable TSH hasn't been a problem and isn't now. But I suspect my wife would feel better if she took a tiny amount of T3, in her old age - though I know at heart this is now too dangerous. I too have learned a good deal from this forum..

DippyDame profile image
DippyDame in reply to diogenes

I'm curious diogenes ...sorry!

Is what you have learned from this forum both negative and positive?I ask, because of your conclusion regarding "a tiny amount of T3" being dangerous in old age.

At age 76 I take 100mcg T3 with no evidence of overmedication.

Am I missing something?

Thank you.

diogenes profile image
diogenesRemembering in reply to DippyDame

No, all I am saying is that in old age, novel T3 addition to T4 doses are to be treated with the utmost caution as we are not so able in old age to with stand significant sharp changes to treatment dosage. What I have learned from this forum is that it exists at all. Prior to Lorraine Cleaver's approach, I was totally ignorant of this subgroup of patients. Before that, I was intensely suspicious of diagnosis by TSH but didn't know why. This forum supplied the answer, from which our research has progressed.

DippyDame profile image
DippyDame in reply to diogenes

Thank you again...

I hope your wife is as good as can be expected.

I don't know Lorraine Cleaver but I'm in Scotland and have followed her campaign with huge interest, I think we owe her a great deal.

It was desperation that led me from 20+ years of T4 to T3 and eventually to high dose T3-only.

My GP thought I was going to kill myself but I was determined to try and told her I was sure there was an answer.

I think she thought I was travelling on a broomstick!

I would probably be dead now or close to it, without this forum.My new hobby horse is low tissue T3, causing cellular rather than glandular hypothyroidism, about which very little appears to be written

I cannot see medics accepting this any time soon though science appears to offer the proof.

"They" will probably now think I have a pointed black hat and a black cat to go with the broomstick!

I'm neither a medic nor a scientist, just a curious, stubborn old woman who is convinced that thyroid patients will continue to suffer until T3 is better understood and more generally accepted.

If I can see this, anyone can.

I'm also convinced that, in my case anyway, it is genetic in origin.

I do know that I have a very rare genetic deletion - inherited by my elder son and his younger son. It causes us no apparent problems.

As for a thyroid connection...." we just don't know"

I'm just so grateful to the wonderful people here who support those of us who don't fit into the medic's tick box of thyroid treatments....and to you.

I appreciate your response diogenes

BB001 profile image
BB001 in reply to diogenes

I'm intrigued. Is there any research that has shown that adding T3 to thyroid meds in old age is unsafe if added in a very small dose and increased slowly?

Also, is there any research that indicates the prognosis for people already on T3-only medication when they get to old age? As those people are likely to have turned to T3-only medication because T4 medication didn't work for them, surely reverting back to T4 medication in old age would be detrimental?

I hope with all your efforts, by the time I get to old age, research will have answered these questions.

Thank you!

diogenes profile image
diogenesRemembering in reply to BB001

No; the reason I venture t his is that after a lifetime on one treatment, the body gets hard-wired to it and has possibly adapted without possibility of serious alteration. Adding T3 then in old age could therefore be difficult.

BB001 profile image
BB001 in reply to diogenes

My experience doesn't suggest that adding T3 in later age is dangerous.

I was on levothyroxine for 25 years then switched to bovine NDT for 5 years, then to T3-only. I came off NDT and started on 25mcg T3 split into 4 doses spread throughout my waking time. I increased by 5mcg after a week, then increased by 5mcg every 2-3 weeks. I got up to 75mcg split into 5 doses in winter and fT3 is in range at around 5.4pmol/L (Range 2.5-7.0). TSH is unmeasurable. I have an atrophied thyroid and my fT4 result is unmeasurable. I'm a poor converter of T4 to T3, between 0.16-0.20.

Given some of the research, I would say that having a chronically low T3 level is the most dangerous. I like this article by Prof. Tania Sona Smith that analyses research on the subject.

thyroidpatients.ca/2020/10/...

waveylines profile image
waveylines in reply to diogenes

I dont like the sound of being hard wired Diogenes & would like the evidence to substantiate the claim. Am getting closer to those years & hard wiring isn't something I'm prepared to take on board easily! 🤣 There was a time when they wouldn't operate over a certain age because you were too old. These days they assess medical fitness for all and operate on people in their 90s sucessfully. So surely unless your wife's health is very fragile, introducing T3 at a low dose very slowly is possible? I am so sorry if thats not the case because she is now too ill & frail that is so sad.

I was once cast off by the medical profession diagnosed with suffering with CFS & left to rot. I was in my early 40s. I had hypothyroidism & it took me over 6years to get effective appropriate treatment but the NHS medical profession refused to withdraw the original diagnosis which was clearly wrong.. Am left in no doubt the long delay harmed my health & whilst I'm well now, my metabolism has never fully recovered & though I cant prove it I believe the NHS ignorance & long delay in treating, then inappropriate and insufficient treatment has impacted on my health. I treated myself for 3years before they finally agreed to the correct treatment and dose for me. Ive learnt from the NHS that most of the time your best off piste as if you wait for the NHS to catch up you suffer unnecessarily. I also think the way the medical profession pigeon hole patients leads to poor treatment....its not wholelistic and for optimum health thats what you need.

For these reasons am so so grateful to the research you and your team do......I live in hope the medical profession will one day listen so people don't waste yeas of their life suffering needlessly.

diogenes profile image
diogenesRemembering in reply to waveylines

After a long time on a treatment which (say) makes TSH almost undetectable in an otherwise healthy T4-only patient, it is difficult if not impossible to adjust the dose and get any response from the pituitary at all. This is what I mean by hard wired. If the pituitary is permanently out of action as well as the thyroid the reliance on taking T4 or T3 is the only "show in town". Nearly all the intricate relationships in health are lost, and only a cruder dosage-body reaction is possible. BTW my wife is 82 and is reasonably well on T4 only. But we discussed T3 in the light of occasional fibromyalgia flare up but she'd rather deal with that by anti-infmatories.

waveylines profile image
waveylines in reply to diogenes

Thanks Diogenes..... If I'm honest I don't understand all the intricacies of how our bodies react in different direcgions to thyroid hormones as you do. I can understand though why you suggested T3 to your wife though - am trying g to think of the American doctor name who felt there was a link between Fibromalgia & T3 & had sucess with a significant proportionate of his fibromalgia patients using it. Am glad your wife is doing well..... 82 is still 'young' these days. So hope she stays well for a long time to come.

I really hope your research will break through the huge high concrete wall that has been built. Am looking forward to reading the layman's version of your latest research when it comes out. Thank you. 😊

BB001 profile image
BB001 in reply to waveylines

Are you thinking of Dr John C Lowe? He treated his fibromyalgia patients with Thyro-Gold bovine NDT.

waveylines profile image
waveylines in reply to BB001

Yes I was. Thank u. 😊

lidoplace profile image
lidoplace in reply to diogenes

I think you might reconsider if you think your wife could benefit. I was 70 before I ‘found’ T3 in the form of NDT. I have a second life after T4 only. I can’t compare ft3 levels before changing because it was never tested. However when questioning an eminent endocrinologist about the risks he said it is my choice whether to feel great for the rest of my life or play it safe and maybe still get the dreaded consequences. 7 years on I would never go back to T4.

DippyDame profile image
DippyDame in reply to lidoplace

I was also close to 70 when I found T3!

T3 had been tested but results were all over the place!

Endo insisted that I should continue to take levo

My body was screaming out in disagreement

When asked about the possibility of RTH, he dismissed the suggestion

He was wrong on both counts!

We parted company, a lovely man, but not a thyroid expert!

Doctor doesn't always know best!

Previously I'd been on levo for about 20 years..

And eventually could barely function.

The start of my T3 journey was sometimes very bumpy...and very long.

All in my profile.

About a year ago, then on 200mcg, I had a heart scan...to be sure!

No heart issues found ...which is critically important.

T3 is not necessarily the panacea of all ills

It is a very powerful hormone and must be used with understanding and caution.

But it absolutely relieved me of many of my ills.

And possibly saved my life.

I can only discuss my experience ( as I do frequently on the forum) and then leave others, once they are in possession of the facts ( as I have absolutely no doubt is the case with diogenes ) to do what they feel is right for their circumstances.

It is a truth universally acknowledged ( well, here on this forum anyway!) that we are all different with different needs.

You and I are clearly the lucky ones...it worked!

I self medicate...

I jumped of my own accord... I wasn't pushed.

nightingale-56 profile image
nightingale-56

I am so appreciative of all you and your team do for us diogenes . After 12 years of suffering whatever went wrong with Mercury Pharma Levothyroxine when my son and I were changed from Goldshield Eltroxin, we are still suffering, and all the departments involved with medication just turn a 'blind eye'. As my LD son is at home with us I can alleviate much of his suffering (me too), but when we go, my heart breaks for what ineptitude he has to suffer from so-called 'Carers' and the 'Powers-that-be'.

JGBH profile image
JGBH

Thank you so much for bringing this to the open. I feel incensed by this utter neglect by so-called doctors… Who do they really think they are? Why do they not care about patients? They are far too arrogant and behave like psychopaths. How could we stop them being so neglectful? Clearly this practice must be challenged and stopped.

LindaC profile image
LindaC

Thank you diogenes. Without you and your team... one fifth+ [in old money!] into this 21st C, that this bare-faced disregard/neglect glibly continues, is anathema. 🦕🐍👽

kittyelen profile image
kittyelen

There are now strict guidelines like Valporate cannot be given to child bearing women (unless extenuating circumstances)

Even back in 2008 ish I was put on this med and advised do not get pregnant on this med, if ever planning would need to move to another med, I was switched to lithium quite soon after anyway as I had some side effects.

The dangers have been known about in more recent years, sadly in the past it was given to some but from a certain year there have been stricter guidelines on this med. I just want to make that clear you make it sound like this med is still given to women of child bearing age when that is really not the case!!!

There's actually a few bipolar meds where they do not recommend in pregnancy, yes this issue exists in the medicine world but this is why the docs do discuss this with you and you are moved to other meds when planning for a baby, and after birth.....this post has annoyed me a bit as you can tell as yes some meds can affect you in pregnancy but doctors will work around this and nowadays they are so more educated and if you want a baby they will not put you on meds like this!

tattybogle profile image
tattybogle in reply to kittyelen

That's precisely the problem kittyelen ... it's shouldn't be ,... but it seems still is independent.co.uk/news/heal...

"According to the latest figures, 222 pregnant women were exposed to sodium valproate in the period 2020-2021 the Medicines and Healthcare products Regulatory Agency (MHRA) said.

They said rates of exposure have been declining since the Pregnancy Prevention Programme was introduced, and rates in 2020-2021 are “substantially lower”.... Mr Hunt said sodium valproate was “a major risk to patient safety” as he called for it to be banned from being given to pregnant women. ...."

kittyelen profile image
kittyelen in reply to tattybogle

Well yes if pdocs do that they are breaking the code of conduct.

gov.uk/government/news/valp...

Gov.uk says Valporate should not be given to women of child bearing age since 2018 unless fully made aware of the risks and on birth control.

helvella profile image
helvellaAdministratorThyroid UK in reply to kittyelen

Seems to be across the Sunday papers:

MHRA to look into cases of unsafe epilepsy drug being given to pregnant women

Sodium valproate, associated with birth defects, reportedly being prescribed without proper warnings

Regulators will investigate cases where an epilepsy drug that can cause birth defects has been prescribed without proper warnings, in light of reports that pregnant women are continuing to be given it.

Sodium valproate is a drug used to treat epilepsy, and is also used in some people with bipolar disorder or migraines. However, it has been associated with a raised risk of birth defects and developmental problems if taken by pregnant women.

Some unborn babies continue to be exposed to the medication: the latest figures reveal 247 women had exposed pregnancies between April 2018 and September 2021.

theguardian.com/society/202...

And who knows whether it is continuing even today? September 2021 is not long ago.

birkie profile image
birkie

Excellent piece of work diogenes👌I myself were totally ignorant about thyroid conditions (thank the lord for this site) as I was well and very fit attending the gym eating a healthy diet had a good silm toned figure loving life.. Then bang I began to feel weird around the end of 2017 just couldn't understand what was wrong with me, I had a noticeable tremor was sweating like crazy, exhausted, fast heartbeat ect, eventually going to see my gp who said its the menupause, but I'd started going through the menupause in 2007 with no real symptoms, upshot I continually went back and forth to my gp from 2017 till sep 2018 when I collapsed at home and my son got me to the surgery where a completely new gp.. (just joined the surgery one week ago) diagnosed me on the spot overactive thyroid I eventually lost my thyroid to it being toxic (full thyroidectomy in May 2019) that's when my horror story continues with thyroid medication and the lack of knowledge GPS and endos have about thyroid conditions, when I was rushed in to hospital in thyroid crisis.. The doc on A&E kept taking blood running to the labs and getting it analysed, my T4 was 100 T3 39.6 TSH not detectable, he mainly focused on T4,T3 not bothering to much on the TSH.... Fast forward to dealing with my gp in relation to my thyroid bloods and all they do is focus on the TSH egnoring the T4 T3.. even one gp told me T3, T4 don't count its the TSH that we should be worried about 🤦‍♀️.. And so this practise continues, I find myself constantly arguing with so called professional people about T3, T4 being the hormones we should be looking at as well as the TSH... But deaf ears comes to mind here!!! I honestly feel at some point the gp was going to prescribed a couple of leeches to take along with my thyroid meds.. Their you'll feel better now!! off you trot.. 😂😂😂 If I don't laugh I'd cry.... Thanks for all the work your doing its greatly appreciate 👍👍🌹🌹🌹

diogenes profile image
diogenesRemembering

It's possible I'm rather "jumping the gun" on this, but we have in principle a highly mathematical but conclusive review provisionally accepted by Frontiers in Endocrinology about to be finally reviewed after required alterations. The altered paper has been submitted and we hope for a smooth onward passage. What it does is to describe the whole working of the Hypothalamus-Pituitary-Thyroid - body system in health and disease. The basis of the paper is to explain two apparently contradictory things. The first is the body's determination in health to closely control this system and not let it get out of hand (this is ROBUSTNESS TO CHANGE). But we have at the same time to explain why, when circumstances demand like nonthyroidal illness, the system freely and smoothly changes to a level totally different from health and maintains that as necessary. (this is ADAPTATION TO CIRCUMSTANCE). No system in the field has been able up to now to explain how these two situations happen. And the explanation involves the thyroid gland's direct production of T3 as well as T4 as an essential part of the system. This then concentrates on the thyroid's role in altering the ratio of T4 and T3 produced to provide the necessary controls. It has been praised by our reviewers, who wanted to put some of their slant on it but not alter the message. Unhappily, it will be too much for the thyroid stablisment to wear or indeed understand how much and how completely it torpedos their stance. There is an intellectual gap wider than the Grand Canyon between we physiologist/medics and the medics who deal in patient populations only.

NieuwOndaatje profile image
NieuwOndaatje in reply to diogenes

Many thanks Diogenes! I’m really looking forward to reading your revised paper! It certainly sounds like it will ruffle a few of the pterodactyl’s feathers! It also sounds like a more comprehensive “systems” based analysis of the HPA axis, it’s complexity and functions and it’s adaptations to changes in health, like a well functioning thermostat should adapt to changing weather, to turn the flame in a boiler on and off, or up and down, to maintain the desired thermal balance! The current static, linear approach to thyroid treatment belies the complexity and dare I say “individuality” of the HPA axis and the broader range of hormone conversion, regulation and interaction! TSH may still prove to be a useful indicator, but only in combination with an understanding of all the other factors at play in regulating the cellular uptake, release and conversion necessary for hormone balance. Statistics are also useful but we do not all fit neatly into the “normal” range and while many patients may respond adequately to the L-T4 “standard” of care, there are many others who continue to struggle with their current thyroid treatments based on these statistical averages and “normal” ranges of TSH and fT4 in serum, rather than on their ongoing symptoms, often without any fT3 tests being considered and almost certainly with no consideration of “conversion” issues! Hopefully your new paper will go some way to highlight some of the current deficiencies in treatment based on these apparent differences between “healthy” adaptation and moderation during illness! Thanks again for all the links to papers and research that shine some more light on the current standards of care, and just how far we still have to travel on our individual and collective thyroid journeys. The learning and support that’s available on this site is unrivalled and I am grateful to have finally found a resource that is so insightful and offers glimmers of hope for new research and glimpses of a potentially bright future for improvements in thyroid treatment.

LindaC profile image
LindaC in reply to diogenes

Oh My! Great!! 🎶🎵👂👂 💚

DippyDame profile image
DippyDame in reply to diogenes

Can't wait!

Huge thanks.

jgelliss profile image
jgelliss

Thank you so much Diogenes for fighting a good fight for all mankind's wellbeing. Is it a wonder that we don't have trust in today's medical care. How can we? Heaven Help Us.

buddy99 profile image
buddy99

OMG! This is so on the nose. Thank you so much, diogenes. When I see a physician I often find myself being treated like a toddler. And when I ask too many questions or do not immediately fall in line with the doctor I'm being treated like a naughty toddler. I want to amend this; often I'm being treated in a way I personally would NOT treat even the naughtiest toddler. I sincerely hope that this systemic disrespect and disregard for patients will end at one point, but I doubt I will see it during my lifetime.

LindaC profile image
LindaC in reply to buddy99

Yes, I doubt it too! Medicine per se is not included in that which follows.

We have many amazing researchers and doctors!

Many people are sufficiently smart to become a doctor, so treating people as if they're idiots doesn't really help anyone but themselves. The GMC is 'meant to' hold them to certain standards of conduct BUT, in certain disciplines, some doctors seem little more than belonging to that 'snotty-nosed' I'm 'right' ;-) Boys Club.

Statistical and scientific methodological endeavours seem to have escaped many, with them relying at all costs on their little 'beliefs' OR face exposure for the charlatans some of them are.

Conduct of [some] doctors!
buddy99 profile image
buddy99 in reply to LindaC

Love it! The sad part is that I feel so helpless so often no matter what approach I take. If I say I'm concerned because of my own thinking (or even of what I learned from experience or another doctor) I get waved off because I have no medical background (at least that is the narrative; people with medical backgrounds do not necessarily get treated any better). If I have the research in hand (or even a research backed information leaflet) I get waved off even more aggressively because as a layperson I do not have the qualification to interpret research (again, narrative). It is basically, do as I say or else and do not worry your pretty little head because I'm a doctor which puts me in the realm of the gods.

diogenes profile image
diogenesRemembering in reply to buddy99

Perhaps one could say (without naming) that on the issue you are talking about, you have communicated with the authors of the work you're quoting, and it is their opinion that you are relaying, not your own as interpreted.

tattybogle profile image
tattybogle in reply to buddy99

not to mention the fact that if you express any interest in your own treatment at all , or god forbid, go and read something about it, and ask awkward questions .. you will of course be diagnosed with 'health anxiety '... for which the treatment seems to be "a reassuring pat on the head every time you go in for anything even if your leg's hanging off"

DippyDame profile image
DippyDame in reply to tattybogle

...and if you self medicate with T3, and even if you have resolved many difficult symptoms, every other ailment minor or otherwise, is blamed on the T3!

buddy99 profile image
buddy99 in reply to tattybogle

Yep! Exactly, tattybogle, that's exactly it. I now get reamed out for saying, "Good morning Dr. R.. How are you?" or even saying, "I could not agree with you more.", which he never believes but somehow always assumes that I'm out to get him. My presence alone seems to imply that I will now surely cause some kind of trouble. So not exactly health anxiety but probably some mental issue that should be treated pharmaceutically or maybe I should be locked up. :D Quite frankly, I believe that if my doctor could get away with beating me into submission he totally would. And I really mean that. He can be very threatening, like right in my face or standing over me while telling me what he thinks of me. It is no joke.

LindaC profile image
LindaC in reply to buddy99

Oh my! Yes, initially, I've kind of been there but never caught by 'bluff and bluster' - you seem like a smart person, you must then 'know' that they're often talking garbage!? You must then try to find the best way to make it work for you, for they won't assist in any way; certainly not in the little cabal they've spent more time creating than in actually reading the available relevant materials for the benefit of their patients, therefore themselves and society as a whole. This is, by now, all crazeee stuff!

They seem rather hapless and hopeless but it is their steadfast unwillingness to 'look at more pertinent evidence' which knocks the socks off their own... whatever it is they seem to think they have'!? Should you feel helpless, this is surely as a result of their ongoing shenanigans... I might add, these charades are largely being paid for from the public purse. Little point in trying to... futile = fingers in their ears, lalalalala.

Best of xox

userotc profile image
userotc

Unfortunately the medical profession is effectively bomb proof so anything goes.

LindaC profile image
LindaC in reply to userotc

Someone, Somewhere, Needs To Stop This.

userotc profile image
userotc in reply to LindaC

We tried to sue for my misdemeanor (prescription drug) but legal companies effectively put us off.

LindaC profile image
LindaC in reply to userotc

They all seem to 'P in the same pot' - shameful conduct from so-called professionals.

Charlie-Farley profile image
Charlie-Farley

Well said diogenes.

Partner20 profile image
Partner20

Yes, the scandal of the effects of sodium valproate, aka Epilim, seems shocking, resulting in the birth of severely disabled children as it has. However, it is not as straightforward as it seems. For many years, since the effects of taking Epilim during pregnancy have been known, most of those responsible for treating epilepsy have warned adult epileptic females against getting pregnant while on this drug, and have generally limited its use to girls pre-puberty, or adult females on contraception. One issue seems to be that some medical professionals have not been prescribing this drug correctly, by not giving the necessary warnings, and another that this drug appears to have been dispensed without the required PIL, and with warnings on the box/bottle obscured by pharmacy labels. These issues almost point to to a shocking lack of personal knowledge, or even ignorance of the effects of this drug by those who are prescribing or dispensing it. Here we are not talking about GPs, but neurologists, specialist epilepsy consultants and dispensing pharmacists Epilepsy takes many forms, and, unfortunately, sometimes Epilim is the only suitable and effective medication. When given to young girls, parents are made aware of the dangers, and they have the choice of treating with a drug/drugs which are not so effective, or using Epilim for as long as they consider safe. This decision is an extremely difficult one to make. There seems to have been a horrifying lack of communication and knowledge regarding this drug, but as many knew, and know, about its effects, it is not clear how these dreadful mistakes have been made. How were some aware, and others not? One obvious error is the dispensing of drugs without a PIL, however packaged, and the lack of warning labels on every pack, box or bottle. I take exception to the fact that the description "cute little babies" has been used to try and create a comparison with these events and the treatment of hypothyroidism. The children affected by Epilim being taken while they were in the womb are horrendously disabled, both physically and mentally, often with very little quality of life, far removed from the image emotionally portrayed by the OP. If any hypothyroid adult, however badly treated they consider themselves to be, or have been, thinks that their situation is comparable, or even worse than that of these disabled children and the mothers that gave birth to them, then words fail me.

diogenes profile image
diogenesRemembering in reply to Partner20

In my post I wasn't judging putting the severity of one situation against another. I was simply pointing out that in too many situations doctors are not sensitive to problems in several areas, and their response does not stand up to the demands made on them as physicians.

LindaC profile image
LindaC

Under the guise of sometimes flimsy 'expertise', why even drunken coachmen [filled with 'bad bread'], would not be permitted the degree of latitude all too often afforded to medics.

shaws profile image
shawsAdministrator

Thnks diogenes. Your post caused tears to come to my eyes at the thought of unnecessary damage to a baby and also to the shock the parents and family members go through that continues for a life-time unless the 'experts' do not change their attitudes.

Due to one of my GPs shouting at me after an umpteenth visit with my child - about 4 years old - of 'putting ideas into her head' when I mentioned that my sister had rheumatoid.

It did turn out that is what she had but not diagnosed until her late teens and is unable to do anything for herself now but thankfully has a good husband.

I always thought that if we consulted with an 'expert' or knowledgeable doctor that we would get 'good service' but by the amounts of disservice statements on this forum many of the medical professionals need to return to 'listen and learn' to avoid disasters to patients and/or offspring.

I had to diagnose myself - one or two hours after GP phoned to say there was no problems. He didn't understand what a TSH of 100 indicated. He was an older GP - not newly qualified.

Thanks to you and others who study to try to relief unnecessary suffering.

BrynGlas profile image
BrynGlas

I thought the very same when I heard about the epilepsy medication.

Probable because I am epileptic as well as hypothyroid. I have never been given that particular medication as yet though.

I got my 3 children out of the way before I was diagnosed with either of my two bugbears. The epilepsy is much easier to cope with, I have to say - at least once I am controlled it is easier to manage!

You may also like...

I don't know what I've done wrong...so upset

it's made me upset because I don't know what I've done wrong and I thought I was making progress. I...

What is wrong with me?

was now in normal range. Asked him to check my thyroid as I match all the symptoms. In July 2014...

What Is Wrong With ME

understand why I feel so horrible on every thyroid medication I take. I am always foggy headed, no...

What is wrong with me?

What is wrong with me

boobs are still painful and leaking. I've had thyroid test done which are normal. See pic for...