"A ban on Liothyronine will be devastating" by ... - Thyroid UK

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"A ban on Liothyronine will be devastating" by Dr Hoendercamp

Pamela0106 profile image
61 Replies

Great to see this GP standing up for thyroid patients. No surprise to learn she is one herself!

"A ban on Liothyronine will be DEVASTATING - I should know" by GP Dr Renee Hoendercamp

pulsetoday.co.uk/views/dr-r...

❤️🦋 ..

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Pamela0106 profile image
Pamela0106
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61 Replies
greygoose profile image
greygoose

What about those comments! None of those commenting have the least idea what they're talking about, so I presume they are all GPs and endos!

Fruitandnutcase profile image
Fruitandnutcase in reply togreygoose

My thoughts exactly - as for that Tom Caldwell character! Says it all really. What an ignorant idiot. Shows what we are up against when he can come up with that sort of comment. I can feel my blood boiling, I think I need to go t a darkened room and have a lie down.

greygoose profile image
greygoose in reply toFruitandnutcase

If he were my GP, he'd probably end up with a smack in the face! Yes! Being hypo can make you sooooooo agressive! As I never fail to point out to my doctors!

Fruitandnutcase profile image
Fruitandnutcase in reply togreygoose

Ha,ha. Bet that keeps them on their toes 😉

greygoose profile image
greygoose in reply toFruitandnutcase

Nah, not always. Half the time they're not even listening, anyway.

Rapunzel profile image
Rapunzel in reply togreygoose

Fight club, gg? 🥊🥊 :P

greygoose profile image
greygoose in reply toRapunzel

First rule of Hypo Fight Club... what was it again?

Rapunzel profile image
Rapunzel in reply togreygoose

:D :D :D

marigold22 profile image
marigold22 in reply toFruitandnutcase

I've reported Tom Caldwell's comment to the moderator! Said he should be suspended/struck off.

shaws profile image
shawsAdministrator in reply togreygoose

I thought that too especially this quote from a GP:-

"Firstly a (n=1) study to justify the view point. Whilst these can sound compelling they are poor science, let's face it they are not even science.

Secondly I am certain the author could not function as a GP seven years ago as she wasn't a GP seven years ago... the GMC entry seems to indicate she gained registration seven years ago.

Thirdly T3 is very far from normal management of hypothyroidism in U.K. medical practice. It is a drug which is associated with a markedly increased risk of AF and drug induced thyrotoxic states compared with T3 treatment. It's prescription and advices prescription has been the subject of several GMC cases for its use outside of suitable oversight by endocrinologists."

I think this GP also made a mistake by calling T3 a 'drug' and quoting this in the last sentence:

It is a drug which is associated with a markedly increased risk of AF and drug induced thyrotoxic states compared with T3 treatment.

greygoose profile image
greygoose in reply toshaws

Yes, he did. And, he got his T3 muddled up with his T4! That should have read '... compared with T4 treatment.' lol

What a silly little boy, showing off there! Wants his bottom smacked!

dashi2208 profile image
dashi2208 in reply togreygoose

I want my bottom smacked . . . must be a hypo symptom . . .

greygoose profile image
greygoose in reply todashi2208

lol

Pamela0106 profile image
Pamela0106 in reply todashi2208

A very rare but lucky symptom hahaha my libido upped and buggered off a long time ago 😂😂😂

Cooper27 profile image
Cooper27 in reply togreygoose

Next to the usernames, it says what their role is (e.g. GP partner, salaried GP) - every one of them is a GP in some way...

Dr Stupid has made an appearance at 9.49 pm.

Thanks for the post Pamela0106

Pamela0106 profile image
Pamela0106 in reply to

You're welcome x

Rapunzel profile image
Rapunzel

Tom Caldwell, m'learmed commenter: Thirdly T3 is very far from normal management of hypothyroidism in U.K. medical practice. It is a drug which is associated with a markedly increased risk of AF and drug induced thyrotoxic states compared with T3 treatment. It's prescription and advices prescription has been the subject of several GMC cases for its use outside of suitable oversight by endocrinologists.

What a tool. He gets his Ts confused and still sees fit to comment. Clearly he hasn't seen the tears study

healthunlocked.com/thyroidu...

or the study which had a twenty year span

endocrine-abstracts.org/ea/...

Doubtless the GMC cases he speaks of resulted in poor Dr S's premature death and Dr DP having to voluntarily jack his registration.

Listen, you doctor (fast becoming my profanity of choice). T3 and NDT saved my life. Period. Feck off and play on the M25

😠

Kitten1978 profile image
Kitten1978 in reply toRapunzel

I reported his statement to the moderator. I don't know whether they will remove it but it was worth trying ;)

"First of all: Tom Caldwell made personal, offensive statements about Dr Renee Hoenderkamp: "the author could not function as a GP seven years ago as she wasn't a GP seven years ago... the GMC entry seems to indicate she gained registration seven years ago". Tom Caldwell makes ad personam attack on Dr Hoenderkamp. It's highly unprofessional.

Secondly: Tom Caldwell lacks basic knowledge about scientific evidence regarding T3 (liothyronine). The safety of T3 medication has been documented in two large scale population-based studies, which were carried out over the period of 17 years (Leese, Soto-Pedre & Donnelly, 2016) and 20 years (Soto-Pedre & Leese, 2015). Here is a link to one of them: endocrine-abstracts.org/ea/...

Furthermore, 13 incidents of patient deaths have been reported in the UK as a result of administration of T4 hormone (Medicines and Healthcare products Regulatory Agency, MHRA, 2017). There have been no reports of any deaths caused by T3 hormone in the UK (MHRA, 2017)."

Kitten1978 profile image
Kitten1978 in reply toKitten1978

Improve Thyroid Treatment petition has reached 22,335 signatures ;)

Please SIGN and SHARE this petition: change.org/p/itt-campaign-g...

We need 100,000 UK signatures to make sure it's discussed in the Parliament.

Angel_of_the_North profile image
Angel_of_the_North in reply toKitten1978

Just to be picky, It's ad hominem not ad personam (hominem is human, not male)

Kitten1978 profile image
Kitten1978 in reply toAngel_of_the_North

Yes, you are right! Thank you. I cannot change what I submitted to the moderator of the Pulse though ;(

quora.com/What-are-concrete...

Pamela0106 profile image
Pamela0106 in reply toKitten1978

We've wrote him an e-mail along with some correspondence he's been politely asked to read up on 😂

in reply toKitten1978

Kitten1978 the billion dollar question of course is whether Dr Stupid would have responded in that manner to a male doctor.

Sorry if I'm seeing sexism and misogyny, feel free to correct me!

Kitten1978 profile image
Kitten1978 in reply to

I'm seeing sexism and misogyny as well! There is plenty of it in the thyroid world (and in medicine in general).

Pamela0106 profile image
Pamela0106 in reply to

I don't necessarily see sexism and misogyny in Tom's specific reply. I simply see an egotistical person who likes to be seen to be clever by pointing out additional facts irrelevant to the main point. I also see a person (regardless of gender) who has never experienced thyroid disease for themselves.

I don't know if it was his reply you meant but we must be careful not to accuse people of something that's not clearly evident/obvious ... even if it's our perception.

That said .... his reply was clearly obnoxious and smug. I'd also go as far as to say that his response, in my personal opinion, says a lot about whether he chooses to follow standard protocol versus treating the patient infront of him. I don't know that this makes him sexist though.

With all that said I agree that Thyroid Disease being a woman's disease and that if it were a man's one, I truly believe we'd be further ahead and more advanced in its treatment.

in reply toPamela0106

He definitely thinks he's a smart ar$e Pamela0106 and agree with you regarding perception, so easy to do.

I did think though it was unusual to see in Pulse such a comment and surprised that nobody picked him up on it.

Yes, we've drawn the short straw but how much longer will it take for change?

Pamela0106 profile image
Pamela0106 in reply to

I am optimistic. The noise about this in recent weeks and months is surely to lo much to be ignored.

I hope I am not blinded as to its importance and sizeable "noise" because I am involved/close to it. I honestly reckon we're starting to get people's attention now for sure! 🤞🏼🤞🏼

We must never give up the fight Xx

shaws profile image
shawsAdministrator in reply toRapunzel

Rapunzel,

Doctors like the above just don't understand the rage many sufferers have when they eventually find out that there is alternatives to levothyroxine, after being repeatedly told that there was no alternative and leave us suffering with disabling symptoms.

Doctors like the above who have never had a dysfunctional thyroid gland (or levothyroxine works for them if they are hypo) has no right to dictate what is right or wrong for the patient.

All the patient wants is a replacement hormone which makes them well. First the BTA made False Statements about NDT (in order to remove it from being prescribed (I assume) , refuted by Dr L. We also know many have recovered their lives on NDT or T3/T4 or T3 only.

An 'expert' who gives misinformation is not an 'expert' when many patients suffer. Those especially who have no internet connection and particularly those driven to suicide in their despair.

Treating thyroid hormone dysfunctions is now always down to a TSH and T4 blood test and ignorance of clinical symptoms which used to be the priority before blood tests. It has become a mechanical diagnosis and, in the UK, the person has to wait till TSH reaches 10. It is diabolical.

Rapunzel profile image
Rapunzel in reply toshaws

Diabolical, shaws, is exactly right. I'm not a vengeful angry person although I am aware that I can often come across as Queen of the Harpies. Nonetheless if I had my way these so called 'experts' would be cast into the eighth circle of hell - where they leave their hypothyroid patients who cannot thrive on T4 monotherapy.

Doubtless the upcoming nhscc decision concerning the efficacy of liothyronine will be influenced by such as Dr stupid. 👿

shaws profile image
shawsAdministrator in reply toRapunzel

Maybe some 'arrogance' will be thrown into the mix as well. I don't know how you got a 'red devil' but it looks good. :)

diogenes profile image
diogenesRemembering

I too have read the article and comments with a great sadness. The problem is that GPs are probably (on average) at least 17 years behind the times as regards present day knowledge. For example, trotting out the old AF and osteoporosis story re T3 treatment is now outdated as are the results of trials on T3/T4 combination, as the studies purporting to show these effects are all fatally flawed. Could go on for hours justifying this statement but let it stand for now. Its based on the fundamental flaw of categorisation rather than personal appraisal of the patient. As for passing the buck to endocrinologists who seem almost as ignorant as GPs this seems to be no solution. GPs could easily monitor T3 or NDT or combination treatment by using the right tests for diagnosis and control (i.e. FT3, not FT4 or TSH). But at the same time, biochemistry dominates over patient presentation which is wrong. The basic problem is that GPs can't handle the situation given the limited tools they have set themselves to use and the limited interpretation of those tools, and no amount of pressure from nonmedical sources will convince them. I did think about commenting in the Pulse article, but my lack of medical qualification would soon lead to hands over ears.

Kitten1978 profile image
Kitten1978 in reply todiogenes

Dear diogenes , I couldn't agree with you more. I have felt for a long time that our attempts to convince GPs or endos are not getting us anywhere. It's like talking to a brick wall (or banging our collective heads against it). It this approach hasn't worked we need to think about something else. The question is: what can we do? Whom do we need to convince? I have been thinking about addressing economists: they are more neutral (they haven't spent their careers convincing themselves that T4 works), they are open to logical arguments. It's not only ethical but also a finacial issue: poorly treated hypothyroidism leads to massive public spending.

Another course of action is litigation but neither TUK nor ITT could afford to take a legal action. As far as we know we don't have a billionaire among HU members, who could afford it ;)

Angel_of_the_North profile image
Angel_of_the_North in reply toKitten1978

Crowdfunding?

Pamela0106 profile image
Pamela0106 in reply toAngel_of_the_North

There is already a Go Fund Me set up for ITT Campaign and I guess TUK is already a charity. Possibly monetary spend there but it's a lot to ask in fairness for people to put into it when already having to adjust to ill health, being off work in some instances, unable to work in others and a huge amount putting all their money into self medication. Massive big vicious circle.

It makes me angry for sure but ultimately I just feel sad about all this.

Just shouldn't be happening 😢

Kitten1978 profile image
Kitten1978 in reply toPamela0106

Yes, it's a vicious circle as so many of us suffer financial consequences of being ill...;(

marigold22 profile image
marigold22 in reply toKitten1978

There is something called Pro Bono where lawyers give their time free for a compelling matter. Dr Renee Hoenderkamp states : "The courts recently overturned a decision by the NHS not to prescribe an alternative to the normal cheaper medication for a child with phenylketonuria. It costs £3,000 per month. The judge said that it ‘would be inhumane’ to deprive the child of this expensive drug. I feel a legal challenge coming on"

lawworks.org.uk/legal-advic...

shaws profile image
shawsAdministrator in reply todiogenes

On here you find open arms as desperation of the patients and instinct tells them that all is not well with the diagnosis and treatment they are receiving.

We would rather read/listen to you without medical qualifications as we can always tell sense from nonsense as nonsense is what most of us receive from doctors/endos with regard to the TSH.

Particularly if you want answers as to why one feel so awful and remain undiagnosed as none of the 'specialists' ever did a blood test for hypo for me.

Gcart profile image
Gcart

I tried to post on the thread but it would not let me. I left off T3 for 5 weeks recently , trying to conform with what I'm told about levo alone working. I worry about the future if I can't source T3.

Anyway after about a week I had to take sennacot as I became totally conspitated , it didn't work and I ended up in big trouble had to use suppository , ugh . This happened over this 5 week period again and again .

My eyes were so painful, my tongue like a piece of leather in the night. I couldn't sleep more than a hour or two at a time, muscle ache , cramps at night . Another symptoms that returned was a burning mouth and lips .

I felt hot and cold and was very irritable.

I decided not to wait the 6 weeks, as I couldn't stand anymore and reintroduced T3. I am pleased to say all the above receded after a week or so.

No problem, keep taking the hormones. However I am very afraid of getting these in the future, as many others on here are no doubt.

Something has got to be done.

Rapunzel profile image
Rapunzel in reply toGcart

change.org/p/itt-campaign-g...

thyroiduk.org/tuk/T3-Campai...

:)

Kitten1978 profile image
Kitten1978 in reply toRapunzel

Thank you Rapunzel ;)

Pamela0106 profile image
Pamela0106

There is a limit on how many times you can open and read it before it locks.

You must have already opened.

Try opening on a new device or clearing all browser history and try again

marigold22 profile image
marigold22

There is already case law which Dr Hoenderkamp quotes on purpose, showing that a judge decided in the petitioner's favour. Why do you think a lawyer would consider there was not a good chance of winning? Not worth a try?

helbell profile image
helbell

I dont get why Concordia upped the price so high as to risk the NHS goose bailing out...or is it a game of chicken. They now say they have resolved issues and will be reducing the price...erm

pulsetoday.co.uk/views/dr-r...

crabapple profile image
crabapple

Dr Renee Hoendercamp replied to her respondents yesterday, including specifically Tom Caldwell...

ITYFIALMCTT profile image
ITYFIALMCTT in reply tocrabapple

What a fine response from her, crabapple tho' I doubt Tom Caldwell will be at all abashed.

crabapple profile image
crabapple in reply toITYFIALMCTT

I agree, it's a good comeback. If he wished to pick holes he really should have read it properly first. And then reread what he'd written. However when you're sooooo sure of your facts...

helvella profile image
helvellaAdministrator in reply tocrabapple

Thanks for pointing out Renee's response.

Can't help wondering how her first draft read - before she edited it into publishable language? :-)

Pamela0106 profile image
Pamela0106 in reply tohelvella

She said to me earlier that she’s learned not to respond to people like him when cross so she took her time to write it and send! It’s a brilliant and very credible response but I’m sure Draft 1 would have been much more entertaining! Haha x

helbell profile image
helbell

I can't access now from my link. I will try and get it from another source.

Pamela0106 profile image
Pamela0106 in reply tohelbell

The link times out after so many access attempts unless you’re a GP member of pulse. I’ve found that deleting my browser history seems to reset it so you can open again x

helbell profile image
helbell in reply toPamela0106

Ah...brill x

helbell profile image
helbell

I cannot access the link now, either...links to firefox screenshots someone posted of her response. in three successive pages. I'm guessing there is an auto recognition that blocks unregistered veiwers on the PULSE.

screenshots.firefox.com/728...

screenshots.firefox.com/feN...

screenshots.firefox.com/h8V...

Pamela0106 says:

The link times out after so many access attempts unless you’re a GP member of pulse. I’ve found that deleting my browser history seems to reset it so you can open again x

RhodeHaw profile image
RhodeHaw

You cannot get this link up unless you are a registered health sector employee unfortunately.

helvella profile image
helvellaAdministrator in reply toRhodeHaw

Perhaps at some point years ago I inadvertently said I am a doctor (which I am NOT!), but I have access.

This link will let you see the content:

dropbox.com/s/n4lh2drv509ly...

RhodeHaw profile image
RhodeHaw in reply tohelvella

I don’t have a Dropbox account, it costs nearly £100 per annum to sign up. Is there any other free way in which to read this article?

helvella profile image
helvellaAdministrator in reply toRhodeHaw

You don't need a Dropbox account.

You should be able to read it for free regardless (it is in my personal Dropbox).

Are you getting pushed towards subscribing by Dropbox?

helvella profile image
helvellaAdministrator in reply tohelvella

And if you did need Dropbox, there is a free option:

dropbox.com/basic

helvella profile image
helvellaAdministrator

Dropbox are a pain - and I have only a free account. (The paid accounts became far too expensive.)

Trouble is, because I have Dropbox on everything, I don't see what someone without Dropbox would see. So cannot readily guide them.

Cooper27 profile image
Cooper27

What an interesting read those comments are! It's amazing to see how much debate there is even among GPs.

I note quite a few seemed to concur that T3 should be prescribed by an endocrinologist, but we see a lot of feedback from patients saying the endo prescribed them T3 and their GP then withdrew it or refused to fill the prescription.

This one had me interested:

"I approached this article in a spirit of scepticism, with Liothyronine being one of those words like "Lyme disease" which sets alarm bells ringing in my head... but it's well argued, and to my surprise I also note that NICE currently endorses the use of liothyronine as an option for specialist initiation."

Why would a GP not wish to investigate/treat Lyme Disease? It's a proven disease, so is a positive blood test a product of manifestation then?

Cooper27 profile image
Cooper27 in reply toCooper27

Just realise this post is 3yo! Woops!

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