Thyroid UK T3 Survey

Thyroid UK T3 Survey

Thyroid UK is planning a survey about T3 treatment which will enable us to show NICE, NHS England, the British Thyroid Association and other bodies that T3 is not an alternative treatment for most people but is an essential addition.

I have put below some of the questions we are going to ask. What we want to know is, are there any other questions you would like to see in the survey about T3 treatment, non-treatment or withdrawal of treatment?

Please bear in mind that this survey is focusing on T3 (liothyronine) - not NDT.

We will try to incorporate your questions if they are relevant but if there are too many, we will do another survey at a later time (we need to be succinct in our analysis and too many questions muddies the waters).

Questions that we are going to ask:

•Age; Sex; Which Country do you live in?

•Have you been refused T3?

•Have you been prescribed T3/T4 combination or T3 only?

•Who prescribes?

•Do you self-treat with T3?

•Does your clinician know that you self-treat with T3?

•What are the benefits for you of taking T3/T4 or T3 only?

•Are you scared that you might have your T3 withdrawn?

•Have you had your T3 withdrawn?

•How do you feel about this?

•Do you feel you have a voice in your treatment of hypothyroidism?

If you have any other burning questions, please just put them below without any other text so that we can easily find them to incorporate in the survey.

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71 Replies

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  • What brand of T3 do you take and why? :

    a) UK Generic T3 because it's prescribed by NHS GP/Endo

    b) Outsourced T3 prescribed on Named Patient basis by by NHS GP/Endo

    c) Own/Self sourced branded T3 due to refusal of NHS GP/Endo to prescribe

    d) Own/Self sourced branded T3 due to permanent withdrawal of NHS T3 prescription

    e) Own/Self sourced branded T3 due to intolerance (and/or ineffectiveness) of NHS generic T3.

  • f) Own sourced branded T3 due to ineffectiveness of NHS Levothyroxine only

  • What dose of L-T3 do you need.

  • Which county, rather than country?

    I can't imagine NHS will have any interest in what is happening in other countries...

  • Because the UK is made up of four countries. As per usual Northern Ireland will be ignored and treated like some sub human hole.

  • Northern ireland is part of uk and they are another country also treated on nhs so need to be included

  • We are going to ask people which country and Northern Ireland will be an option. The Scottish Parliament will be interested in this survey as may other bodies.

  • Good to hear. Those of us living in Northern Ireland nearly always get ignored.

  • Great to hear. Theres more to the uk than jsut england.

  • Brilliant idea! I have one small correction regarding your justification of why T3 should be prescribed on the NHS: for a small minority of thyroid patients, who can only tolerate liothyronine, T3 is more than "essential addition". It's a LIFE SUSTAINING medication (sorry for the capitals but I wanted to emphasise it).

  • I'm with you on this one kitten1978 as I'm allergic to thyroxine!

  • Thank you glassgirl I'm alergic to any form of T4, both synthetic and in ndt. That's why I feel so strongly that T3 needs to be seen as a distinctly separate thyroid medication in its own right.

  • It's life sustaing for me

  • Agree with Kitten. x

  • I agree with Kitten on this

  • Could you add: What is the impact on your life when you do not have acces to T3?

  • Also, is there a way to illustrate to them that T3 is bought privateley for a fraction of the cost of what the NHS is charged? E.g I pay £50 per month for 25mcg time release T3 that my private GP gets made up in Germany. But NHS figures are in the £100's

  • Brilliant! Hopefully it works - looks comprehensive with the addition of others. Maybe something about the reasons why t3 is required/why t4 didn't work for individuals

  • If you pay for your T3 how much does your it cost? (So they can see the nhs is being over charged)

  • 1. If Liothyronine becomes a drug that cannot be prescribed on the NHS are you willing to try T4 only treatment?

    2. Do you think that that the treatment of Hypothyroid patients is satisfactory in this country?

    It strikes me that this threat of T3 withdrawal has brought to the fore how much unmet need is out there for Hypo care!

  • •Does your clinician know that you self-treat with T3?

    • If no, why have you made this choice?

    (rolls up sleeves and rests hands on keyboard, ready for some serious vituperation...) :D

  • I love that word "vituperation" and I am going to park it in firmly into my next GP appt...sadly haven't got a pianist to accompany me as an advocate! :-)

  • - if yes, is the Clinician continuing to treat you?

    (I attended a NHS Endo Consultant appointment last week. I have become more and more ill, on ever increasing amounts of T4, since he stopped prescribing T3 two years ago ('due to sky high cost' he said). He refuses to prescribe it again. At the appointment, I explained that in desperation I have started supplementing specific nutrients to reduce antibodies, improve my immune system, enable better conversion etc ('there is no point' he said) and have sourced T3 from overseas. He ended the appointment. He will not see me any more because of these decisions and will be writing to my (just as useless) GP to inform him of my ('reckless') decisions. Perhaps my GP surgery will sack me too, for trying to save my own life?)

  • Q: If living in NHS England, what is your CCG?

    Q: What is your postcode? [essential demographic data missing from last TUK survey]

    Q: Have you had your DIO2 gene tested?

    Q: Has your DIO2 gene polymorphism been accepted by the NHS?

    Q: Has the failings of your NHS thyroid treatment rendered you suicidal?

  • Hi,'

    Can this include NDT seeing as it has T3 in it? Otherwise difficult for myself nd others to be a statistic for the survey as T4 only doesn't work for us but not just taking Liothyronine.

  • KateP

    - If you have never taken T3-only or T3/T4 combo you are not the target group for this particular survey.

    - T3 isn't the same as ndt: people who feel well on ndt would probably tolerate T3-only or T3/T4 combo, the opposite isn't always the case. Some of us can only survive on T3-only medication.

  • Never had the opportunity to try as my Dr and Endo flatly refused so I found NDT cheaply online and that was that!

    When we win our campaign hopefully I'll get it on prescription.

    It's clearly the T3,in the NDT that makes me well.

  • I'm glad ndt is working for you ;) I'm sure you are right: it is T3 in ndt, which is making you feel well. The problem is: some of us cannot tolerate any amount of T4, not even in ndt. That's why I strongly feel that T3 needs to be seen as medication in its own right, different to ndt. Take care

  • Do you have a heart complaint?

  • Why only NHS England....what about Wales, N Ireland and Scotland? It is after all Thyroid UK!

  • agree - while NHS England may be initial target, this is an opportunity to collect data for the whole country in one hit! If done properly, it can be segregated and analysed separately. It would also possibly draw out disparities in different parts of UK

  • That's exactly why we are asking which country do you live in. :-)

  • It's only NHS England who are consulting but we can certainly send the report to all the NHS' :-)

  • Regards self medicating I would draw attention to the problems many have sourcing it.

    Have you ever encountered supply problems in self sourcing ?

    Have problems sourcing from abroad ever meant you ran out of medication, with no alternative supply ?

    Does this cause you concern ?

    Is the cost an issue for you ?

    We don't want them to think that this is possibly an excellent way for NHS to save some money, leave them to self source.

  • G) What barriers have you encountered to self-sourcing your medication from abroad?

    G) What are the disadvantages of having to fund your own medication? (I didn't want to use the word "dangers" to avoid a leading question)

  • PLEASE PLEASE make sure the survey is done right with multiple choice and is able to be tracked properly with quantifiable figures and statistics. I dread it being open questions only where the free text responses cannot be quickly deciphered. I'm sure you will anyway but just throwing it it there just in case!

    Possibly worth asking questions about whether people have required time off work and/or claimed DWP benefits as a result. Anything that will aid the understanding of the NHS that the cost of not prescribing Liothyronine is surely worse than doing so.

    On a similar note - questions about how often people are booking up GP time because of persistent symptoms following refusal of T3 treatment. Again it makes the point that it's more efficient to prescribe than to not.

    Lastly - asking if people source it themselves and for how much. The point in this is to raise the concern of people having to self medicate and also to prove it's cheaper to get if the NHS just change their supplier or renegotiate with Mercury Pharma.

  • The problem with multiple choice is that there may not be an answer that is suitable. There always needs to be an 'other' box with an explanation - which complicates everything.

  • Multiple choice is all very well and I appreciate its merits for collating shared experience but can we PLEASE PLEASE have at least some free form areas where we can, as Maggie0652 suggests, explain via an expandable 'other' response. Otherwise the nhs will never know that if T3 is 'banned', there will be many more people needing wheelchairs/bags full of other meds/have to give up work/stop paying taxes &etc.

  • To clarify my request for @Rapunzel and @Maggie0652 ... I asked for a multiple choice that is done properly, thus "Other (Please Specify)" would absolutely be an option.

    However, if it's done correctly then there should be a viable option for everyone to choose including "other" ... but if you think that the organisers will read, count and categorise thousands of free text replies with life stories, bad spelling/grammar and abbreviated txt speak included then I'd say that isn't going to happen. Not without text analytics and even then it isn't easy.

    The point in a survey is to deliver statistics and those statistics must be of a sizeable quantity in order to be taken seriously and also to be validated as a valid data sample that reflects the majority. That can't be achieved if you just do a survey asking for lots of free text replies.

    Hope that makes sense as is more clear.

  • We usually put an "other" box in too although we do want this survey to be very focussed.

  • I agree with Pamela0106 :

    - both closed and open questions need to be included.

    Commissioners are always interested in how the issue impacts on public spending e.g. ability to remain in employment, claiming benefits etc. Hence, there need to be questions regarding the above e.g.

    - What was the financial impact of being treated without T3 medication? or What was the financial impact of being refused T3 medication/having your T3 medication withdrawn?

    Similary: an additional expense to the NHS resulting from inadequate treatment of thyroid conditions will interest them:

    - Have you experienced secondary health problems as a result of thyroid disorder treatment, which didn't include T3 medication? If Yes, please elaborate.

    - Have you undergone medical procedures/tests relating to secondary health problems, which resulted from treatment of thyroid condition, which didn't include T3 medicatioon? If Yes, please elaborate.

    - Have you taken medication for secondary health problems resulting from treatment of thyroid condition, which didn't include T3 medicatioon? If Yes, please elaborate.

    I'm sure the above questions can be worded in a better way but you know what I mean, don't you?

  • We usually don't ask open ended questions (such as we have here) as it's more difficult to analyse. :-)

  • For people without a thyroid gland the need is greater so

    ? Are you without a thyroid gland ?

  • Yes, but people who still have thyroid gland, which doesn't work, also need T3. We don't want it to be for TT patients only.

  • I agree just meant that there needed to be a question for people without a working thyroid, sorry if I mislead you. xx

  • No probs.

  • Great idea! along with all the other additions above, I've aded a few more. Also, this is such a very powerful tool, and as I'm sure you know its really important the data is captured in a way that's easy to report back on - so I hope you don't mind, but I have made some suggestions below on (I do surveys and data analysis for work!). I would also like to offer my help, if you need it. (apologies if this is "selling ice to eskimos"! but I want to help as much as I can)

    Additional questions:

    *Definitely need to ask a "conversion" question

    Do you have a T4 to T3 conversion issue?

    including all the associated questions in the above post.

    *What year were you diagnosed hypothyroid?

    *what is the cause of your HT? (autoimmune, thyroidectomy, subclinical etc can't remember all the options!))

    *Would also suggest asking latest thyroid hormone levels and whether FT3 is tested and monitored and by whom (GP/endo/private/self), as this would give great insights into those being under-treated and variances across CCGs.

    * what is your current thyroid medication regime (dosages)

    •Age; Sex; Which Country do you live in?

    *add postcode so you can identify geographic location and CCG

    •Have you been refused T3?

    *needs reordering - suggest lead with "have you been prescribed T3" question

    •Have you been prescribed T3/T4 combination or T3 only?

    *I'd suggest breaking this up:

    * Do you take T3 (in any form)?

    * how do you take your T3? (alone, in combination with T4, in combination with NDT, NDT alone)

    * how long have you been taking T3?

    •Who prescribes?

    * suggest rewording:

    Is your T3 prescribed? (options: by NHS GP, by NHS endo, by private GP, by private endo, not prescribed (self treating))

    •Do you self-treat with T3?

    *delete - replaced by above answer option

    •Does your clinician know that you self-treat with T3?

    •What are the benefits for you of taking T3/T4 or T3 only?

    * I'd suggest asking this separately. There may be different results for combo or solo T3 treatment, and would be good to segregate responses. Also, you could provide options of the known hypothyroid symptoms, so its easy for people to "tick off" and not forget anything (and helps you with data analysis at the end)!

    •Are you scared that you might have your T3 withdrawn?

    •Have you had your T3 withdrawn?

    **** this needs to be moved up to the top - under "have you been refused T3"

    •How do you feel about this?

    * applies to either refusal or withdrawal

    •Do you feel you have a voice in your treatment of hypothyroidism?

  • ElleBee71 All reasons why some of us need T3 aren't known. Conversion is only one of them. My own blood tests indicated perfect T4 to T3 conversion and yet I still can only tolerate T3-only medication. Immune reaction is one of the possible reasons e.g. T4-antibodies were identified in a couple of described cases in Japan. Scientists simply don't know enough about it.

  • Hi Elle Bee71

    Thank you for your comments. I was hoping I could find someone to help us with this. How about we have a chat? Send me an email? lyn.mynott@thyroiduk.org

  • The two questions there that I would find difficult are: Have you been refused T3? Does your clinician know that you self-treat with T3?

    There needs to be some way of giving more detail. E.g.; my private doctor knows I self-treat but my NHS one doesn't because they make it impossible to discuss it! The NHS didn't even tell me it existed. I think Yes or No answers don't give a proper picture of what's going on.

  • You may find the FB page, "Thyroid Petition Scotland" of some interest.

  • On Levothyroxine? T4 only treatment? Still feel rotten? Told it's all in your head? SIGN IT! 👇🏼

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

    It needs 100k signatures before it will get any level of consideration! This community can get it there!

    THYROID PATIENTS BE HEARD!!!

  • Do you feel confident to self medicate with T3

    Would you prefer to be monitored by a professional clinician

  • How did you feel on Levothyroxine monotherapy before the addition of Liothyronine, and would you be willing to return to that state?

  • Do you have the DIO2 gene

  • Testing for T3 as well as just T4 and TSH - My GP says she cannot get blood test for T3, so how do you know if you are converting sufficiently?

  • Add 'have you previously been on t4 only treatment?'

    The NHS consultation implies that people on t3 treatment will be switched to t4 treatment. I can't imagine anyone on t3 treatment hasn't already been through t4 treatment and had disastrous results. Been there. Got the t-shirt. Nearly died. Cost the NHS a bomb on spurious testing before I realised t4 was poisoning me.

  • Life sustaining product for me. No thyroid, ill on T4

  • I've been suffering for 27 years; self diagnosed hypthroidism [later tested and diagnosed HASHIMOTO's] - only have levothyroxine available. Been reading soooo much about T3 but never prescribed. Despite being physically involved with netball five times per week, body weight doubled in those years. This cannot continued. T3 needs to be addressed urgently for ALL thyroid sufferers to give us a possibility to continue to exist with some quality of life.

    Questions seem perfect. Good luck!

    Thank you.

  • I know that Levothyroxine is causing my Lichen Planus outbreaks so I am needing an alternative. I am looking at replacing with T3. I like others feel that there should be guarded emphasis on the phrase essential addition. Until the survey is completed the number of people using T3 only is unknown. Thank you Lynne for continuing to work on our behalf.

  • I can't even get my doctor to test my T3 ! I'm

    Overwhelmed - where do I start after 25 years feeling awful on Levothyroxin to find a doctor to sort my thyroid ?

  • Please start your own thread Avidreader, to ask your question, more members will see it and will respond. This thread needs to be kept on topic. Lyn asked for questions only to be added to the survey.

  • I have a question along the lines of;

    What is the rationale in only providing patients on replacement therapy with TSH testing only?

    Clearly this relates to patients on levothyroxine as i'm guessing that those of you already taking T3 have come clean with your GP so that they can get FT3 tested or does that not apply either? And the reason i am asking this is there are a lot of us out there now that dont get FT4 or FT3 tested who might not know that adding a little liothyronine might be a godsend to our treatment. I think i have just answered my own question re the rationale! lol!

  • How do I know if my doctor should be prescribing me T3?

  • How do I get hold of T3 as I'm already on Levothyroxine 100 MG, however still suffer with acute tiredness, feeling low etc???. I've never felt any different?? It's as if someone has unplugged me?

  • Caza12 and Lynnsymo

    Reply to Avidreader also applies to you

    Please start your own thread to ask your question, more members will see it and have the opportunity respond. This thread needs to be kept on topic. Lyn asked for questions about T3 only to be put in this thread so they can be added to the survey.

  • Thank you everyone for your questions. Some will be used but some would mean the survey would not be as focussed as we like. Some of them were used in our previous survey for the Scottish Government, which we will also be using in our campaign.

    This thread is now closed. Thanks again! Lyn x

  • WHY do you self-treat?

    Did the ignorance of alternative treatments to levothyroxine being available, lead to end of your career/loss of business, despite going back to your GP so many times saying the problem was your thyroid and the levo alone wasn't helping? (Ok maybe not this, but something the illustrates the destruction of life that t4 only has caused to some of our lives)

    Good luck! Hope we can make a loud enough noise together.

    🙂

  • If you are currently on NHS prescribed T3 or T3/T4 combination have you at any time self treated?

    If taking T3 or T3/T4 combination has your work pattern changed compared to being on previous treatments?

    Which benefits have you claimed, as a direct result of being wrongly medicated for your thyroid condition?

    Have you come off benefits since being pescribed T3?

    How long did it take for you to be diagnosed as hypothyroid?

    After diagnosis, how long did it take to receive optimal medication?

  • Were you unable to work until you had T3 ?

  • Has your Endo advised you need T3 but can not offer it to you on the NHS as their funding has been withdrawn for T3?

    This happened in my case where my Endo said I needed T3 but she can no longer offer it!

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