I have had a total Thyroidectomy in 1996. I was 23. I was put on thyroxine, I won't go into detail, but after years of not feeling well I was put on T3. Some Vit D and Iron. I felt totally different a new person that could take on the world. A couple of months ago I went to get a repeat perscriotion and was given Thyroxine. I explained about being given the wrong prescription. ...... They didn't want to know. After a few day of ringing the surgery asking to speak to a doctor i was told very agressivly by the GP to go away we are not discussing this with you any more.
I am wanting to set up a forum. I am going to speak to my MP. And i am going to contact newspaper that will listen.
Anyone have any ideas. I am at the moment buying T3 from a website used by body builders but it's not working the same. I feel totally depressed. I only want to feel well. I'm not asking for the world. I have even offered to pay for it...but again they won't entertain it. I am just a number to them. It's ruining my life.
Moan over. Any help greatly recieved.
Many thanks. Melanie x
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Oh dear. I also am in Oxfordshire (in the South) and have had a thyroidectomy. I have been waiting and dreading the letter. You must fight this and I certainly shall be if and when it happens.
Dr Toft has written about T3 and thyroidectomy patients but I do not know how to find the paper. Seaside Susie may know. He says that the problems of no thyroids for these patients mean that he is reluctant to suggest this route unless absolutely necessary. T3 is vital for you. I wish you success in the battle. Have you approached the CCG?
I am wanting to set up a forum. I am going to speak to my MP. And i am going to contact newspaper that will listen.
There is an existing FB forum set up for this very reason: ITT (Improve Thyroid Treatment) Campaign which is working with ThyroidUK, Lord Hunt of Kings Heath, and others, which you can join. There is a lot of work going on behind the scenes and at the highest level.
There may be alot of work going on... but I have been a thyroid sufferer for nearly 30 years and I havnt heard anything about this. Only when i go searching for information do I find it. The profile needs to be higher.
Glad you are joining in the fight, the more that do surely doctors will realise our need. Write to Department of Health too and your local Health Watch. Complain to your CCG. I managed to get mine back with an Individual Funding Request but have to be reviewed every 6 months at the hospital and live in fear of another endo saying I don't need it. Taking it to a newspaper is a good idea too. It has already been in the press but won't do any harm to raise it again as the problem hasn't gone away.
I would suggest contacting the local radio stations and newspapers and talking about your situation re the loss of T3. If they will air/run the story it will give your situation more publicity and may also alert others facing the same challenge.
Also contact your MP for a meeting. You may not get the result you want but the more people that complain about their problem obtaining T3 the better as they cannot then say they were unaware of the situation. I think it is disgraceful that so many people are being condemned to suffer from very poor health or having to try to source T3 from an unknown source with eratic availability.
I also noticed the other day that Thyroid UK sell car stickers @£2
Can you afford to buy private heath insurance? My family in Scotland has it. Sometimes they use NHS and sometime the insurance. I see many participants here struggling to get what they need.
Private health insurance never covers pre-existing conditions
Sorry. In the US we now have coverage in a public premium based program, but that is in danger of being repealed. Medicare for people over 65 or disabled does not discriminate. I am a retired federal employee with a choice of many plans all of which cover preexisting conditions to my knowledge.
There are underserved people in rural areas, but if one lives near a large city, access is reasonably easy. I am not required to obtain a referral from my primary care physician.
There is much turmoil here now, but my health care is excellent.
If patients have capacity to make decisions for themselves, a basic model applies:
The doctor and patient make an assessment of the patient’s condition, taking into account the patient’s medical history, views, experience and knowledge.
The doctor uses specialist knowledge and experience and clinical judgement, and the patient’s views and understanding of their condition, to identify which investigations or treatments are likely to result in overall benefit for the patient. The doctor explains the options to the patient, setting out the potential benefits, risks, burdens and side effects of each option, including the option to have no treatment. The doctor may recommend a particular option which they believe to be best for the patient, but they must not put pressure on the patient to accept their advice.
The patient weighs up the potential benefits, risks and burdens of the various options as well as any non-clinical issues that are relevant to them. The patient decides whether to accept any of the options and, if so, which one. They also have the right to accept or refuse an option for a reason that may seem irrational to the doctor, or for no reason at all.2
If the patient asks for a treatment that the doctor considers would not be of overall benefit to them, the doctor should discuss the issues with the patient and explore the reasons for their request. If, after discussion, the doctor still considers that the treatment would not be of overall benefit to the patient, they do not have to provide the treatment. But they should explain their reasons to the patient, and explain any other options that are available, including the option to seek a second opinion.
The medical Negligence case of McGregor v Lanarkshire Health Board said that not following the GMC guidance resulting in harm is negligent.
T4 is not a substitute for T3. therefore stopping T3 without your consent is negligent.
Prescribing of Liothyronine for any new patient is to be initiated by a consultant endocrinologist in the NHS, and prescribers are being advised to deprescribe in all appropriate patients rather than all patients.
The British Thyroid Association also say that:
Patients already established on Liothyronine and experiencing symptomatic benefit should be allowed to continue with Liothyronine treatment prescribed in primary care. Abrupt change in treatment may impact negatively on well-being. Changing to Levothyroxine therapy should only be considered if the patient is not experiencing benefit from Liothyronine and any change should only be made following informed discussion with the patient and, if necessary, advice from an endocrinologist.
if you have had a thyroidectomy you are not an appropriate patient for de-prescribing.
I would print out all the above documents take them to the surgery and threaten to complain about the doctors negligence if T3 is not restored. then make that complaint if they don't.
mine was stopped by ccg no warning, i asked for it in writing where they said it was too expensive, nhs england called my ccg also my endo & MP it was reinstated and i get individual funding for it, they are not allowed to stop on cost basis alone. However my endo feels under pressure and on a watch list because of it. My endo appt on monday and im expecting the 'we should reduce etc' which i will refuse, my husband coming with me as he gets fed up of the amount of BS that gets thrown at us. If you have been stable for some years they are not suppose to withdraw only review and that has to be a discussion not a one sided decision.
My ccg were very open with me that only those who fight for it will keep it, they know most wont and therefore will save money. I stress individual funding as in my ccg case they are not going to entertain everyone having access so are deaf to group protest, it is your health individually and only you can address that on your own. Any group action is likely to take years you need yours now. x
As I had already been stable on t3 and previously very ill on t4 it was obvious to my endo t4 was never going to work. He did me a letter, i spoke to ccg on phone, my mp wrote to them and after a few emails between myself and the ccg it was just reversed, i did point out the new ruling said it should not be removed from those already on it. I kept everything short and to the point, i didnt do attachments or bombard them with info. I just kept telling them they couldnt remove it from me. My endo continued to give me prescriptions which i filled in france during that period. I also threw in that as a tax payer it was my right to receive NHS care and without my t3 would be unable to work. I made the point that like insulin you cant just remove someones life saving meds that are for life, my thyroid isnt going to grow back, they removed it without any real discussion of how that would affect my life after, i held them totally responsible that they had no after plan and THAT THE COST OF T3 WAS ENTIRELY THEIR FAULT NOT MINE AND I WAS NOT GOING TO BE PENALISED FOR NHS INEFFICIENCY.
So no papers or documents just reasoned argument, just stick to the facts that you have been stable many years and would not accept untrained people to make cost decisions about your health and life. Polite and firm. xxx
The NHS england ruling after the consultation, i think someone has listed it above also i think the BTA is listed who say should not be removed if historic use.
Symptoms on t4;
chronic headaches every day, insomnia, IBS diarrhoea 4-5 times a day, fatigue (i was sleeping 20 hours a day) which was a relief as the pain in my hips, knees was so shocking i couldnt walk properly. Rock solid ankle/achilles which is a real give away, i hobbled, burning feet like steam irons pressed on them, oedema legs but especially lower legs creasing at ankle, anxiety, crying, eczema, it was a very bad time. Being dramatic i felt i was being poisoned and would die (thats how i felt) It was hard for them to ignore my symptoms as i was on 8x co codamol daily they were happy to up those to dyhra codine, 4x2mg diazepan and amyltriptyline at night. I was on lopermide and mebeverine for the IBS, betnovate cream (steroids) for the eczema, all of which i no longer need on t3.
1. Patients already established on Liothyronine and experiencing symptomatic benefit should
be allowed to continue with Liothyronine treatment prescribed in primary care. Abrupt change in treatment may impact negatively on well-being. Changing to Levothyroxine therapy should only be considered if the patient is not experiencing benefit from Liothyronine and any change should only be made following informed discussion with the patient and, if necessary, advice from an endocrinologist.
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