A Personal Plea

I have something to say. I would like to start by stating CLEARLY that this is my own personal opinion. This is not the opinion of Thyroid UK, it is not sanctioned by Thyroid UK. Still being mindful of the fact that I am a representative of Thyroid UK, I will not be swearing or abusive, but I have something to say.

The e-petition has crossed the 10,000 mark! :) YAY!


Now what?

Now the Department of Health will have to give a response. There is a very strong possibility that no one will be satisfied with the response! Then what?

Basically, there are a few choices.

We can rage and rant about the unfairness of it.

We can shrug our shoulders in rueful acceptance and use the results towards further campaigning (after all, just over 10,000 people cared enough to sign it right!? :) )


We can spend the rest of the precious few remaining days of the petition trying to get it up to 100,000 signatures.

If it seems like a mountain to climb, think of it simply. This means everyone who signed it, needs to find 10 other people who will sign it.

There are people who haven't signed it.

Some people believe that nothing will change, others are not entirely happy with the wording, some people do not trust sites online with their personal details.

To these people, I would like to say something.

By not signing the petition the message you are sending to the government (and to anyone else who cares to look) is that you don't care about the cause. That it is not important.

If you check out the other e-petitions on the site, you will find many that are over 10,000. The vast majority of these are animal related.

In terms of simple logic. More people care about animals than care about THIS cause. Can that be right?

I think not! I think that an awful lot of people care about THIS cause and would like to see change.

PLEASE, PLEASE, PLEASE can everyone sign it and at least make a good try at getting 10 other people to sign it.

We CAN make change, but only if enough people care more about themselves then they do about animals!

Once again - these are my own independent thoughts.



26 Replies

  • well said! I always sign petitions if I agree with them, I get at least one a week. you have my support I will keep trying for more signatures!!

  • The wheel that squeaks the loudest is the one that gets the grease!

    10,144 doesn't seem to be shouting very loudly compared to many other petitions :(

  • Signed long ago and still sharing on social media. Some of my friends have signed and shared it too. Most of them don't have thyroid disease but have seen how important this is to me and others like me. Many of them have seen me practically crippled with pain, so depressed I had ECT several times, unable to work, lacking in any motivation for life and now they see me living life to the full. I'm not 100% but so much better than before. This is all thanks to t3 (and Thyroid UK, without whom I would never have been aware that I could get well). Even my GP agrees and can see the remarkable difference to the extent that he didn't lecture me on the dangers of self medicating (I do not recommend sel medicating if it can be avoided) but vowed to help me improve things further!

    T3 has saved my life. It has improved the lives of my family. This research could help thousands of others in similar ways. It's not just about finding another, better drug. For some people it is about making available the ONLY treatment that works for their condition.

    And now I shall get off my soapbox before fall off (t3 doesn't cure clumsiness ;) )

    Carolyn x

  • I usually am very careful about signing petitions, but this one certainly is right down my street. At this moment, we're starting a trial to see what sort of patients benefit from added T3 to their T4. To start with we're going to look at patients with no thyroid whatever owing to ablation from thyroid cancer, classify them as to their ability to convert T4 to T3 in the body and see whether preference for added T3 is correlated with conversion efficiency - i.e. the poorer the conversion, the more the patient will appreciate added T3 rather than T4 alone. If this little trial gives promising results, then a full-blown crossover trial is envisaged, but again stratifying people into good, mediocre and poor converters - this stratification is missing in all the trials on T3/T4 combos I've read. This of course is what you are aiming for in the petition, though it will be T3 that is used by us rather than NDT - but you can extrapolate the results to NDT's T3 content. So in a way we're probably jumping the gun as far as a UK trial is concerned.

  • This is very exciting news! As someone who was very ill on thyroxine but is doing relatively well on t3 only, your research is of particular interest.

    Will you be noting whether TSH has a bearing on response to t3? I just wondered because my TSH was always below range on thyroxine even if my t4 was below range (I felt dreadful but the GP insisted I was over replaced because of my TSH. I don't think he knew what t4 is!) I understand TSH is involved in conversion so it would be interesting to know if response to t3 replacement shows any relationship to TSH.

    I look forward to hearing your results and conclusion. It is very reassuring to hear there are scientists so invested in getting to the truth :)

    Carolyn x

  • When you've lost all or most of an active thyroid, the relationship between FT3 and TSH is totally altered - that's to say that there isn't one! The usual relations that hold in good health simply change out of all recognition. You can't argue from health as to how to treat in disease. Also the relation between FT4 and FT3 is altered.

  • Thank you for your quick response. I shall be sure to mention this to my GP. He is very good and keen to learn why t3 has made me so much better. What you have said makes so much sense and seems so obvious when pointed out to a layperson like myself that I wonder why so many doctors have a problem understanding it. At least my doctor treats the person he sees in front of him rather than a few numbers on a screen. I'm one of the few lucky ones, it seems.

  • CarolynB, science is still pretty much clueless about people like you, in fact I have yet to see a study that admits that you even exist other than some of Dr. Lowe's work. Maybe we could talk Diogenes and his collaborators into looking into patients that need T3 only to regain their health, it would provide some much needed insight that is pretty much lacking at this point. PR

  • Diogenes, that is great news. Post thyCa I was recovering on T3 but post RAI was switched to T4 and deteriorated badly. Eventually T3 was below range and I was mostly bedridden with debilitating symptoms. I added T3 to T4 which helped a little with brain fog but there was little improvement in physical symptoms. Convinced initial over replacement of T4 had built up and was causing the problems I stopped it for 8 weeks, taking T3 only. Disappointed with lack of improvement I then came off T3 for 4 weeks while I was still waiting for T4 to clear out of my system. The improvement was amazing for the first 2 weeks but awful after. Resuming T4 saw the adverse symptoms come back within a couple of days. Adding T3 stopped them. So, apart from conversion issues which are improved with T3 I have found that T3 calms the adverse effects I experienced on T4 only.

  • well said ....... if enough of the ' users ' of this site that come for help/advice and compassion were to sign and promote it it would already be at least 5times more than it is now ..........alanxxx

  • Hi

    Have you thought about posting this e-petition link over other autoimmune-related forums? There are quite a few on HU. Thyroid diseases are so common in any other autoimmune/ inflammatory conditions. Many people/patients simply do not know they got thyroid disease. xx

  • This is a good idea. I'm sure Louise will look into this if she hasn't done so already. Knowing Louise, she's already started :)

  • Good idea.

    If anyone is a member on another group and would like to ask permission to post the petition, that would be great! :)

    I would be hesitant to spam other groups with it however... :)


  • I posted mine on the Menieres disease Facebook page. I think there were a few signatures from there

  • Brilliant idea. Thank you :)

  • Just about to see if I can put it on our local Mencap Society FB page. So many of the members of this Society have Thyroid conditions and I can see some of them have deteriorated since the inception of generic Levothyroxine.

  • That would be fantastic! Thank you :)

  • I posted all my Facebook friends, see what happens

  • I do not sign petitions any more after getting 20 + messages per day from one petition site, all from different names so there was no chance of blocking. Its not that I don't care its more that it is a futile gesture, you will get a stock answer and that is all, it can be debated as much or as little as you think but there is NO reason to think anything will change. There is plenty of evidence that NDT works better than levo but its getting the RCP and BTA to accept it thats the problem, we have to make these changes first.

  • We need some up-to-date, government backed, UK research in order to battle against the RCP etc.

    I haven't had anyone report getting spam from .gov since signing the petition.

    We are expecting the stock answer, that's why we need 100,000 signatures. this can only be achieved by as many people as possible signing and sharing.


  • There is plenty of contemporary evidence but the drug companies have a grip and as long as they are making money there is little chance of change with petitions that are easily ignored by people who don't want things to change because of the profits.

  • I too have had unwanted email from one or other petition site - but only within the terms I agreed to (though I may now wish I hadn't, I can always terminate the agreement). More importantly, and in complete agreement with Louise, none whatsoever from this government petition site.

    Of course we want 100,000 signatures, or 1,000,000! But without any doubt, absence of a petition never changed anything.

  • I should think you could make an exception for this site. I signed it ages ago and no-one has spammed me or otherwise made a nuisence of themselves. I must sign about 5-10 pétitions a day, on average, and I've never had any problems with any of them. I think that if one can't do anything more physical to change the world, signing a petition is the least we can do.

    And it often makes a difference. Several great battles have been one just by signing pétitions. It may sound trivial to you, but there was a dog called Beau, condemned to be euthanised in Texas, for things he didn't do, complained about by a neighbour that didn't like dogs. So, the pétitions started Rolling out, I signed many of them, the retrail was put off and put off until they could no longer resist the weight of all the pétitions they were receiving. And, finally, the dog was released from the pound. He is alive and well. And, if that seems trival to some people, it means everything to that dog.

    Never under-estimate the power of the petition!

    Oh, and I have shared this petition on several Facebook groups. I think all the people that are going to sign, have. But I will post it one more time to make sure.

  • Thanks GG! :) xxx

  • :)

  • another 257 in 3 days.... only 39 days left to sign up....

    just re-posting alerts potential signees (bump up on fb). :)


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