Anyone any news on Consultations - re proposal to remove T3 from prescription?
One HypoT friend has told me hers has been and gone with only Dr input?
I have a response from the CMO office saying public will be able to contribute.
Cannot see anything open or closed on the NHS pages.
It is supposed to be prescribed for 'clinical need' and most doctors only believe that levothyroxine is sufficient and what are we complaining about, because they've been brainwashed that levothyroxine alone is the hormone replacement of 'their' choice but not by the patients on this forum. Only TSH and T4 is tested with no regard to the disabling clinical symptoms which are treated with 'other than' thyroid hormones.
Yes, I am aware of this shaws - the narrow minded head in sand attitude of many medics. Been fighting it all my life, as have many others as this, and other forums and pages prove.
But CMO's office did say there would be Consultations and public would have their say, so was wondering if anyone had any knowledge on when consultations likely to be. Was told after election. As that has now happened.
I am trying to find out when they will take place so that we can all have our day through them...hopefully.
I hadn't heard there would be a Consultation (confrontation 
)
I imagine the BTA and endocrinologists assume because the majority of hypothyroid patients being 'women' that we are hysterical anyway and do not believe us that adding or taking T3 only gives us a pain-free - symptom-free and normal life.
I think that is our due right as human-beings and not being dictated to by those who've never had a dysfunction with their thyroid gland or who do o.k. on levothyroxine. There has to be exceptions.
The fact too that they have also prohibited NDT which suited many and if members cannot afford to pay for their own thyroid hormones are abandoned. Oh! They also made False Statements about NDT and despite three yearly reminders by Dr Lowe, they never did respond before his untimely death.
thyroidscience.com/Criticis...
How many have paid for a Consultation and be sorely disappointed by being treated abominably by people who should have a sympathetic soul in that they'd do their utmost to improve their patients' wellbeing come what may.
Dr Skinner (RIP) said that patients were put in Parlous Situations by being untreated/undertreated/undiagnosed despite clear clinical symptoms.
I will try and link or post my reply from the COM 're the consultations. We have to start standing up for ourselves. Dr Skinner, like Dr P and others have sacrificed such a lot to help us, it would be criminal to let their efforts go to waste.
We have to open ears. And I'm sure there are enough if us to be heard if only willing.
My Endo is a coward lieing .. (Can't say the word in here) ... I wish I knocked him out and happily settled for the consequences after my 'So called' consultation ...
It is so frustrating -our blood boils. If lies are told about the oldest thyroid hormone replacement, NDT, safely used since 1892 with no licence and no blood tests - only the patients clinical symptoms our trust has been removed.
I think we've lost respect for many doctors who are supposed to be more knowledgeable but all that happens is that the 'extras' for the symptoms push up profits for Big Pharma instead of hormones being provided for patients who don't get well on levo.
Wool cannot be pulled over our eyes for ever so this forum has been fruitful and allows members to vent their feelings.
The thing is when we have a consultation, we are expecting the person to have more knowledge in order to relieve clinical symptoms. That's their job.
It's my opinion that they DO have the knowledge, they are clinical specialists supposedly! They wouldn't send you into a spine operation with someone who hasn't the 'Knowledge' would they? They are only interested in keeping the obscene NHS salary and bow to the pressure of the NHS to not prescribing T3 OR trying to swap people onto T4 .. To the point where they blaitantly lie about it! My endo said 'It's dangerous and not recommended' .. If they were straight and said 'it's near on impossible for me to prescribe you it but if you self medicate I'll monitor you' I'd be happy with that but no, they would rather lie .. As for them being more knowledgable of course they are, they know all about it, they just choose to turn their heads and be cowardsand forsake their patients ... If their not knowledgable that's even worse as people will be going to see a specialist, most likely taking 80-100k a year wages out of the NHS without a clue what they are doing above GP level .. What ever one it is it's disgusting!!
Did you ask your endo to elaborate on the 'danger' and why it is not recommended? The danger being too much t3 =palpitations and heart problems (low thyroid function and mistreatment with T4 can have same) and what medication does not have 'side effects' as long as we know about them we can look out for them and if they are monitoring us as they should be it should not be a problem. It is only not recommend because of cost! Question everything negative they say about T3 - make them explain and then stand up to their lies.
Quasarlis The consultations I was talking about are the NHS consultations to discuss the proposal to remove of T3 from prescription. NHS sometime hold open consultations that allow the public to comment.
Unfortunately your experience of an Endo consultation is not an isolated case. You only have to read through posts on this forum to see how many people have had negative experiences with Endo's. And to think they are getting good money for insulting and attacking and neglecting patients!
That said, others do have better experiences. I just wonder how such 'eminent' and 'intelligent' people can allow themselves to be 'suppressed' and not stand up for what they really believe - the one's who know the benefits of T3 but allow their hands to be tied by ...whomever?
I know ... Just get so angry with all this!! I have been self medicating with T3 for a bit, still tweaking my dosage .. Went for my pre-op assessment for a wrist op that I have been waiting for (Git 2 weeks until I have it), for over a year .. My free T3 levels were elevated (as said I'm tweaking my dosage) .. I get called by the head nurse in the pre-op clinic who was 'relaying' the anethetists concerns who said 'Your free T3 levels are elevated .. We may not be able to do the operation for fear of Thyroid crisis/mixedema coma' (What a pile!! I don't have severe and untreated Mixedema that the above are rare reactions to!!) they didn't give a flying ... about my elevated T4 AND TSH that was on my Blue Horizons blood test ... When ever I see the NHS mentioning the removal of T3, Endo's blairantly lieing about its 'dangers' and so on it just makes my blood boil!!!
If your T3 is elevated are you processing it ok? When my adrenals are struggling with stress it impacts on the uptake of the meds and showed as elevated too. Once adrenals settle would drop back down. Surely a pre - op may cause adrenal fluctuation.?
We are being too nice to endos. One things I've learnt is that being a pain in the ass patient is more likely to succeed in relation to endos than being a nice one. I never had to do this with other "breeds" of doctors. Maybe endos see as a histerical females and when we start to behave in a way, which is seen by the society as "less female-like" they start to take us seriously. I'm getting in touch with my butch side for the purpose of endo appointments 
As I said I wish I knocked my little lieing, coward endo in his arse when I had the chance I really do!!!!
I'm going to try for the 3rd time to comment on this post Kitten1978
Some Endos/GP's are not so bad, they agree and acknowledge the benefit of T3 they just don't have the b***s to stand up and fight for us.
We do need to be strong. We need to go into appointments armed with exactly what we want and why. Preferably with evidence to prove that some people do well on what we are asking for. We also need to be proving that the current treatment does not work. We should be making sure that adverse affects of any treatment are yellow carded. Nowhere had the adverse conditions and symptoms that T4 caused me been recorded. And now the system will not allow me to do it after 7 years.
It is like taking a car to a mechanic - if we go in batting eyelashes and playing dim, we will get robbed...unless you are lucky enough that they mechanic takes a fancy to you... But go in three telling them what the problem is and what they need to do to repair it makes it harder for them to take the 'you now what'.
Go in armed with evidence. Printout and anything you can quote/discuss incase they refuse to look at the evidence. If the Medic starts flustering about the 'dangers' ask them to elaborate and explain. Then when they have finished tell them that you now know of the 'side effects' (and which medication does not have side effects? ) you know what to look for and can be aware, so if you were to react in any adverse way you would contact them to review the medication. After all you are an adult. They can do their job and monitor you.
So be strong and determined. Know your stuff, know what you want and don't take no for an answer. Perhaps we need to be asking these Endo's what responsibility they are prepared to take when 'their' inadequate treatment makes us more ill?
Butch up girls!
I agree 100%. The difficulty is having to do the above when we are unmedicated and really ill ;( It gets easier when we are better and more like our old selves.
I like that: "what responsibility they are prepared to take when 'their' inadequate treatment makes us more ill?" This is a really interesting point. The problem is proving that T4-only treatment made us more unwell. I don't know how we could prove that ;( Testing positive for DI02 gene can help to substantiate our claim but it may not be sufficient evidence for some docs.
Thought I'd responded earlier to this but didn't go through - second time in two days!
I am the proof that T4 was causing me more problems, as when I stopped it they all went away, within a few days. Tried several times to reintroduce it but each time symptoms reoccured - again within days. Trouble is that I'm sure the GP's did not log this on my record. And if they did it is not there now, as far as I could see.
Yet a few years ago another GP has noted that I said I felt better since being on T4!!!!??? I had been on T3 for a few years at that point and it should read T3, not T4. I have asked that to be amended. Have an appointment the beginning of Jul will check again then.
If you look on the FB pages the amount of people saying similar, should be proof enough?
Just because it is not 'logged' by surgeries (WHY? - oh yes, so it makes it easier for NHS spokespeople to say 'There is no evidence of benefit) ) doesn't mean evidence not there. Isn't 'real life' evidence better than paper stuff?
I see where you are coming from I cannot tolerate T4 at all but because my head doesn't explode when I take t4 I don't think they really believe me. Even if I carried taking t4 and eventually died I think they would attribute it to something else! The problem is that docs simply refuse to listen to their patients... If my serum blood results indicated that I'm totally not converting T4 to T3 and my T3 was below norm that would perhaps mean something to them...They are just so stuck on the "paper stuff" that they are blind and deaf to anything else...
They will probably fabricate and lie about the participation too, just like they do with everything else regarding our illness ... I say 'Go Away! (Or words to that effect) to them ...
That is the thing. Even if we, the public 'patients' get our say, who's to say they won't lie. A million of us could respond they could say they had 10 responses. How would we know? Cynical I know, but my trust in the systems died a long time ago... But it is about time things changed.
Poor treatment means there are increasing numbers of people suffering with mis/non treatment. But the increasing available knowledge, internet etc, means that these people are becoming increasingly aware of how poor this treatment is. How poorly this condition is understood. I think there is a growing feeling of the injustice of this and more and more people are becoming 'fired up' to fight for change. It is long overdue! If we keep accepting what is thrown at us we have no complaint. We have to do something. Enough of us have to do something! There is enough of us to be heard.
Hi Ursula,
I have been informed by NHS England that the consultation is in development and that members of the public will be welcome to participate in the consultation.
Further queries can be directed to NHS England as shown below:
Telephone: 0300 311 22 33
Email: england.contactus@nhs.net
General Post (including complaints): NHS England, PO Box 16738, Redditch, B97 9PT
Address for service of legal proceedings and formal letters of claim: NHS England, Legal Team, 4W08 4th Floor, Quarry House, Leeds LS2 7UE
British Sign Language (BSL): If you use BSL, you can to talk to us via a video call to a BSL interpreter. Visit NHS England’s BSL Service.
Yours sincerely,
Lee
DH.JPG
Lee Williams
MPD Parliamentary & Public Accountability
Room G104 Wellington House
133 – 155 Waterloo Road
London SE1 8UG
E-mail:lee.williams@dh.gsi.gov.uk T: 020 7210 5264
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shaws nightingale-56 crabapple amasufindme
Thank you for notifying us of this UrsaP .
We need to be aware of when they take place to be able to respond. Will let you know if anything comes back from emails.
Will keep an eye open for this. Thanks for finding out information.
Your a star UrsaP
Ha ha...if only...stars are shiny and bright!! If you could see me now! LOL!
Thanks, UrsaP for your tenacity and vigilance. Look forward to your update
UrsaP, thank you.
When the news from NHSCC broke at the end of March, NHS England stated "In developing the guidance, the views of patient groups, clinicians, commissioners and providers across the NHS will be sought." My local patient group knew nothing about it at the time.
I'm afraid I have no trust in the systems and would not put it past 'them' to sneak it through on the back of the GF consultations or some-such. Leaving us without a say.
When they say 'patient groups' are they 'established' groups or anyone? I have asked to join the patient group on my local CCG but not sure it has been accepted. Think I tried before and got no response. I also emailed my local GP patient group to see if I can become a member - no response? Must chase that up.
As I understand it (& I'm sure someone will correct me if I'm wrong) the only patient group involved in previous guidelines has been the BTF.
I'm on our PPG and it is the only way to find things out. Mind you, when I asked about starting a Thyroid Group at the surgery it was not answered, just ignored.
nightingale-56 Can you not 'ask' your questions in writing they would find it harder to ignore?
Got a reply from Mr Lee Williams today saying that the Consultations were still in development and he couldn't comment. Advising me to contact NHS England directly. I have responded that I have emailed NHS direct (No response as yet!) But hope that in line with his earlier email which did say that the public would be welcome to participate that he and the CMO would ensure this is the case. Surely the CMO has some clout in these things. Perhaps others could contact the CMO asking for her input too? sally.davies@dh.gsi.gov.uk
If enough of us do, maybe they will take notice? I continue to live in hope.
Confused re consultation with endo. 
Consultant wants to remove half of my thyroid...
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