I went to a CCG Open Workshop yesterday evening. Very informative and our local Chief Pharmacist with the CCG said that we should all complain separately by letter about the problems and side effects of current Levothyroxine as more was likely to get things changed this way. Having already written to Simon Stevens I now intend to write to a few more at the top and hope others will too. It was interesting to note that someone from the Parkinsons group was also saying that current generic medicines were also having detrimental effects to patients. I don't suppose we are the only groups to be suffering.

It would be really good if other people could write to those at the top and we can get medication problems into the open. Please also look closely at local newspapers to see if any meetings re health are going on in your areas, and go along to give your views.

In the meantime it would also be good to sign our own petition and share this.

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30 Replies

  • J_Bee, thanks for posting. Sounds likea productive meeting and I agree, people need to speak out when Levothyroxine isn't helping them, if only to stop the myth that it is the gold standard treatment.

    I added the TUK petition link to your post :)

  • Hi Clutter, Don't know what happened to my reply to you earlier? Thank you for adding the TUK petition link - was hoping someone would do this as I am useless at adding things onto posts. Must get to grips with computer.

  • J_Bee, I swear I replied to a couple of posts earlier but my reply isn't there :x Dunno whether I forgot to click on submit reply or whether the site is glitching.

  • every patient who has problems with any drug should file a YELLOW CARD report this can be done online ...........its the most effective way of getting matters noticed

  • Hi rfu, A lot of people have put in Yellow Cards and the Chief Pharmacist know this, so she said it would be much better to have lots of letters as they have more sway. When I said to her that she should really take a look at HU/TUK site, she said that she had and that the letters would make more of an impact.

  • That does sound informative. Never heard of a CCG open workshop before - what was the purpose of this and were any other topics raised/discussed?

  • Hi cg, They were honest with us and said that this is the first time that they have been allowed to be honest with people and share the parlous state of finance in NHS (as if we didn't know, but they are fond of shutting the stable door when the horse has bolted)! It really seemed to be about how they could save money even further with sensible ideas. I asked if it would be better if we had more than one months prescription at a time if we were stable, as it would mean that fewer prescriptions were filled, saving time and money and payments to Pharmacists (which caused a snigger), but didn't really get an answer. Our Council hold these workshops on a few themes - mostly on a five year basis to see what money savings can be made by getting ideas from local people mostly attached to local groups. Sometimes we even get what we want.

    There are a couple of other meetings (not by CCG, but to do with health) in the very near future in the Braintree, Essex, area and if anyone wants information on these, would they please PM me.

    Now have to fill in my feed-back forms and give them further food for thought!

  • j_bee - thank you for explaining. It definitely sounds a good idea providing it leads to changes being made.

    Sounds as though Essex is leading the way with initiatives.

  • Think they are trying to see where they can cut things to the bone even further!

  • Levo doesn't work, especially long term!! Its cheap though and although it has NEVER had any clinical tests to discover whether it works or not the big pharmacy companies that sell it won't let go!!

  • Most of us already know this, and it is certainly true of the current T4 on offer. Secretly think the Pharmacists and Doctors also know this. We just have to get through to the GMC and BTA, who don't want to lose face. Maybe the clinical trials are underway now with us as the guinea pigs?

  • It's estimated that 80% of patients on Levothyroxine do well Glynisrose. A friend (TT 15 years ago) and my sister (RAI 3 years ago) are both well on 100mcg Levothyroxine. It's true that the remaining 20% who aren't well on T4 only are ill served when they aren't prescribed T3 or NDT which might resolve their symptoms.

  • Estimated by who? Probably doctors or pharmacists, its a case in point that as soon as you are diagnosed the GP will refuse to listen to you any more!! Doctors are very good at saying 'Its not your thyroid' and are very good at pushing cheap untested drugs on people. Also they have another get out, it goes, 'Well, you can't expect to do everything at your age!' which I was told when I was barely 40!!

  • Just a thought and I may have missed it but if there were template draft letters e.g. to MPs and CCG on the Thyroid UK website would it encourage more people to write to appropriate bodies? I know myself with a foggy brain how long it can take!

  • I know some people find it very difficult to write things and even more so when brain fogged. Others, like me, can drivel on forever. But I really do encourage anyone who feels strongly enough to do so in their own words.

    If you were in a position of power and received dozens of near-identical letters/emails, I think you would tend to take less notice than if you received the same number, but each one the outpourings of a real person in their own words.

    To some extent it isn't the exact words you use but the fact that you expended the effort to put your view forward despite still not being well.

    The variation in how things are explained might eventually manage to say it in a way such that the reader actually "gets it" from one of the letters despite having not got it in many others.

    So I do put a template letter as something to avoid unless you really, really cannot manage anything yourself.


  • Thank you for your reply - please see my response to J_bee's comment below.

  • I reported 3 GPs to the GMC for repeatedly misdiagnosing me and leaving me very ill. As far as the GMC were concerned hypothyroidism and depression displayed the same symptoms and saw nothing wrong with these GPs failing to interpret blood tests and not acting on a TSH of 7.6.

    They've clearly not learned anything whatsoever since the Shipman enquiry and still aren't interested in patients concerns and complaints.

  • If two things are difficult to tell apart, it is simply an argument for putting in more effort to make the determination, not an excuse for getting it wrong. (Especially you quote one salient item of evidence which should have been enough to indicate the possibility/likelihood.)

    I had not realised that you had followed through to the GMC. Well done.


  • Rod - I wrote to the GMC twice and enclosed copies of my complaint and the surgery's response. I had to fight to be seen by an NHS Endo who confirmed hypo. My next door neighbour at the time had a high heart rate and was losing weight rapidly, the same GP diagnosed him as being depressed. He gave up with this GP, saw another and it was found he was hyperthyroid.

    Even when I'd been diagnosed by Dr P which I told them, these GPs still would not accept that I was hypo.

    The GMC do not answer to anybody, they're effectively running a protection racket for GPs - GPs have to pay them an annual fee for 'training'.

    Have submitted a formal complaint concerning these 3 GPs to the Health Ombudsman and at the moment they need some more questions answered. I am not holding out any hope whatsoever.

  • Yes Pooh, template letters would be good, but we need to be telling our own stories about how generic Levothyroxine affects each one of us. It also rather sounds as if it has to go beyond local CCGs, so I will write my letters and as a last resort go to the Press, as I feel I am slowly being poisoned.

  • I agree having reflected on Helvella's comments, rather than a template as such, it maybe useful to have a few key points/sentences to include in what would otherwise would be personal accounts.

    I'm also beginning to write letters and think the more people speak out the better. First is to my MP then I intend to write to a wider targeted group. I have also started to approach the media in the hope someone will pick up the story including helping to promote the current e petition.

    I hope that you find a solution to your current medication problems. I had to go it alone initially as my GP refused to refer me to an Endo (even though I could barely stand). I still need to import meds but I now have an Endo on my side which helps.

  • Well done Pooh. I started at the top, but as I said I didn't get anywhere, so my next letter is to the Health Ombusdman with copies to all I think are relevent (and some maybe not). Would be really good to get our petition out to a much wider audience, as I don't feel I can put it on my fb page anymore. Seeing someone at GP surgery tomorrow (not GP) in regard to medication. I do know that this problem is being discussed at a higher level though ( or have been told it is)!

    Good to know that you have an Endo on side, unfortunately ours is another useless one, without even any good advice to give, let alone meds.

  • I agree re the petition, I am trying to contact celebrities on facebook but I don't think my messages have been viewed. My next thought was twitter but I have no idea if it is possible to message people direct so I'm open to ideas!

    It is so frustrating that people cannot get a. proper testing b. good advice and c. appropriate meds inc. dose:( !

    Good luck with your campaigning I really hope you have some positive feedback. My next letter will be to all the Dr I've seen!

    All the best with your treatment.

  • I sent an e-mail to the Daily Telegraph journalist who'd written a feature on renegade doctors.

    Also tried to submit some words on Jerome Burns website following his feature in the Daily Mail Health section. Couldn't create an account though.

    Earlier in the year we contacted our local MP concerning a DWP matter. He became involved (I'd made a formal complaint) but didn't realise that he was actually assigned to the DWP. I really don't think he'd want to hear from me again due to my persistence and downright refusal to be treated so badly!!

  • Good to include MP's CG. We have a good one who has just been appointed a position in Parliament, so hopefully she will be even better for us.

  • If you write a letter of complaint to anyone they will go to the 'source'(likely the BTA or RCP) and ask for information.

  • When I wrote to Simon Stevens all I got back in reply (after at least 6 weeks) was a kind of standard letter giving details of T4 from AMCo. Facts which we were already aware of and that we had said we did not believe anyway about how it was exactly the same as Goldshield Eltroxin. So I will now write some more letters as I feel we should not be left in this frightening state without being able to obtain medication for ourselves easily in this country.

  • Maybe the source will then get fed up keep answering letters and do something about it! Probably not though.

  • I wish we could make the targets of your mail go to PATIENTS rather than officials but hey ho!

  • Glynisrose, doyou mean for the 'targets' to reply to patients and not just pass them on to other officials. If so, I fully agree.

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