Will I go backwards?

Hi all, a round up - Changed my doctor and she has said that she will not let me have 75mcg Levo in future as they are bound by guidelines even though on 50 even understands that I had been really poorly for so long. She has agreed to let me see an Endo, BUT will he/she be bound by NICE and the same guideline? Please comfort me and advise me. I need a good understanding Endo in Worcestershire. Willing to pay...

22 Replies

  • Hi Di588,

    I'm confused about what NICE guidelines they're referring to, as I don't think I've seen any that specify the amount of Levo a person is on!

    Do you have recent test results of TSH and FT4 - and FT3 if they've done it - that you could share with us?

  • I didn't put the results in this post as I had previously posted and everyone came back and said I wasn't on high enough and to take a Vit B supplement. Also phone the GP service of my private medical insurance and he said the same. I went back to my old doctor and basically bullied her into the higher dosage. Now I fear I will be stuck. From memory the TSH was 2.1, T4 17.8, T3 3.2. B12 309. When I told the new doctor that I should be aiming for TSH of 1 she just hummed. I have only just begun to feel anywhere near normal. Just worried what an Endo might do.

  • PS I didn't know what NICE was wither, but didn't ask

  • These are the NICE guidelines. cks.nice.org.uk/hypothyroid...

    They used to have a section saying that pregnant women should aim for a TSH of between 0.2 - 2.0, but in the recent update that has removed that. I think some people still have a print out.

    Otherwise there is a paper that Thyroid UK can share with you that evidences the recommendation for a TSH of around 1.0, I think there is also a Pulse article from Dr Toft.

    Thyroid UK also have a list with references about local Endos and their treatment - you could see if there is anyone listed on there that is close to you and ask to be referred to them specifically?

  • They are guidelines. They appear on NICE's website. But they are not guidelines in the same way as the full-blown guidance produced by NICE. They were simply adopted by NICE from somewhere else in the NHS where they were simply called Clinical Knowledge Summaries - and I doubt NICE actually want them.

    For proper NICE guidelines, go here:


    Try and find anything useful regarding thyroid issues...

  • There is still room for an increase with those levels. Stupid doctor wants you to be ill. Can you get another doctor or ask for an endo referral? Or just buy your own online and keep your old dose.

  • Can you buy Lev online? I am in the process of 'vetting' the endo's in Worcestershire to see if they are bound by the same ' guidelines' as the GP or whether they will take my wellbeing into consideration. The doctor told me that long term Levo effects the bones and also dementia and that GP's have been struck off for prescribing outside 'the guidelines' Had a whole lecture.

  • Yes you can buy levo online without prescription. I've never wanted to buy it though, so can't give you any specific links. It is also possible to buy T3 and NDT online without prescription.

    If you want information on this, create a new post, ask about where to buy what you need, and ask for replies to be sent via private message. It is against forum rules to advertise links publicly where people can buy prescription meds without a prescription.

    It isn't illegal to buy meds abroad by the way. They can be imported legally, as long as they are not controlled drugs (like tramadol for example, which is a prescribed opiate for pain relief).

    If the parcel you import costs more than £15 (and that includes postage and packing), you may have to pay VAT and a delivery charge before your package will be delivered. It all depends on whether customs spots your parcel or not.

  • From many of the same places as T3. I don't think there is any NICE guideline that says your dose of T4 has to be reduced when you are still symptomatic and TSH is not suppressed. I think your doctor is making it up.

  • Hi Just googled NICE and apparently it is Public Health guidelines

  • Guidelines, not rules. Your doctor is either ignorant about what they mean, or is just fobbing you off.

  • Both I suspect, but she made the point that she didn't think any of the doctors in the practise would be any different. I had a whole lecture about how GPs had been struck off for this very thing - prescribing outside the guideline. I've only just joined as the doctors at my old practise kept changing and were pretty bad. Will try to find an Endo, if that fails I'll buy. I can't go back to how I've been for the last few years. I told her all this but nothing I said made any difference. I quoted the guideline from Thyroid UK, she just hummed. I don't think they would look at any papers from Toft or anyone else. Onwards and hopefully upwards.

  • I don't think doctors have been struck off for just prescribing outside the guidelines, I think she's exaggerating a bit there. There was a very interesting article someone posted on here not long ago, but I can't remember who it was. Nor what it was called. But, if you put 'guidelines' or NICE in the search box up top, you might find it.

  • GP should only be struck off, if they have no "clinical reasoning" and other "evidence" to support their decision. There is an example of a doc in NE who prescribed B12 above guidelines. However, he was not struck off, but told not to do it again til a research project had been completed.

  • Are your results in range?

    Off the top of my head I wonder if you could ring the surgery and ask for a copy of the NICE guidelines with the relevant passages highlighted (just for your own records) so you know exactly what she's referring to. Then either write a letter and/or make another appt, send/bring Dr Toft's article (highlight the passage that says some people need to have a tsh under 1 to feel well) and say in light of the fact that you've already been ill on too little medicine you don't agree to a change in dose right now while your results are in range. (Why would they have a 'normal range' if being within that range is harmful to you?)

    If you choose, you can enclose at least a dozen academic papers/study results saying the same as Toft, as well as studies that say that a low tsh is not harmful to health.

    Otherwise can you get it prescribed on your private insurance? Since that doctor agreed w the dose increase?

    Personally I find the endo route too fraught w potential to go wrong. They are frequently more conservative than gps.

    Good luck. I do hate how they hold this over our heads. It's so unnecessary.

  • puncturedbicycle That is a brilliant idea to make the GP produce a copy of the NICE guidelines in respect of thyroid that she is referring to and that she states prevent her from prescribing more than 50 mgs of levothyroxine. As we all know she won't be able to do this because there are NO NICE clinical guidelines for the diagnosis and treatment of thyroid. My OH e-mailed NICE a few weeks ago asking that they provide an explanation for this. As yet they have not replied 😈. ....He will be contacting them again. ☺☺☺☺☺☺☺

  • Well, there are NICE guidelines (queenmabroo posted them above) but at the very least it will help you understand and have a record of what exactly it is she is objecting to, and she won't be able to chop and change depending on what you say. If you understand her objections you can address them.

    If you can avoid buying levo w/o a script I would do. You may want to consider adding in a small amount of t3 or ndt though, considering how small the difference between 50 and 75.

    Good luck! Keep us informed.

  • puncturedbicycle - oh yes..thank you.....I must have missed queenmarbroo's post and have now followed/read the link. ☺☺☺☺

  • Hi Di588. The bad news is that all docs should follow the NICE guidelines. I see someone else has posted a relevant link. They are only guidelines, ie not mandatory, so doc is allowed to engage brain, and treat you as an individual (see NHS Constitution).


    “The NHS belongs to the people.”

    “The patient will be at the heart of everything the NHS does. NHS services must reflect, and should be coordinated around and tailored to, the needs and preferences of patients, their families and their carers.”

    “The NHS is accountable to the public, communities and patients that it serves.”

    “The system of responsibility and accountability for taking decisions in the NHS should be transparent and clear to the public, patients and staff.”

    “Working together for patients. Patients come first in everything we do.”

    “We put the needs of patients and communities before organisational boundaries.”

    “Everyone counts. We maximise our resources for the benefit of the whole community, and make sure nobody is excluded, discriminated against or left behind. We accept that some people need more help, that difficult decisions have to be taken – and that when we waste resources we waste opportunities for others.”

    “You have the right to receive care and treatment that is appropriate to you, meets your needs and reflects your preferences.”

    Putting Pts First: NHS Business Plan


    “Ensuring that people have a positive experience of care; improving patient experience of primary and hospitals and community mental health care.”

    “The Francis report made clear the impact that organisational culture and values can have on care: a top down management system driven by national targets can skew priorities and cause us to lose sight of what is most important.”

    If you look at the Code of Ethics for GPs gmc-uk.org/guidance/good_me...

    It clearly states you're entitled to a second opinion, and GP has to respect that.

    "d. consult colleagues where appropriate

    e. respect the patient’s right to seek a second opinion"


    " 3.15. You must provide a good standard of practice and care. If you assess, diagnose or treat patients, you must:

    1.a. adequately assess the patient’s conditions, taking account of their history (including the symptoms and psychological, spiritual, social and cultural factors), their views and values; where necessary, examine the patient

    2.b. promptly provide or arrange suitable advice, investigations or treatment where necessary

    3.c. refer a patient to another practitioner when this serves the patient’s needs."

    The NICE guidelines direct docs to the BNF (drug handbook).


    Which states the following:

    "ADULT over 18 years, initially 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (e.g. coffee, tea), or other medication, adjusted in steps of 25–50 micrograms every 3–4 weeks according to response (usual maintenance dose 100–200 micrograms once daily); in cardiac disease, severe hypothyroidism, and patients over 50 years, initially 25 micrograms once daily, adjusted in steps of 25 micrograms every 4 weeks according to response (usual maintenance dose 50–200 micrograms once daily)"

    Looking for a diagnosis? Several sources clearly state that signs and sympomts should be considered.


    The identification of the nature of an illness or other problem by examination of the symptoms

    Oxford Reference Concise Medical Dictionary 3rd Ed. 1990; Oxford University Press, Oxford (old fashioned book edition, ie not web)

    Diagnosis: The process of determining the nature of a disorder by considering the patient’s signs and symptoms, medical background, and – when necessary – results of lab tests and X-ray examinations.

    Perhaps putting things in writing, and reminding doc of above may help.

    I hope you get the right treatment sooner rather than later.

  • Wow Greenwall brilliant information. Your post should be made a sticky thingy (see how well the brain is working today 😂 ). I think I'll get on my PC and print that off (on my tablet at the moment).

  • Thank you so much for this. I,Lloyd keep you all posted.

  • Change your doctor if possible and I hope you will get someone with a bit of 'sympathy' somewhere in their body.

    It's obvious they have absolutely no awareness how unwell we can be. One doctor brought before the GMC because he treated patients' symptoms rather than blood tests as he said the situation was parlous for patients due to the guidelines.

    He also said that nowadays we were given far too low a dose of hormones (which used to be 200 to 400mcg of NDT). This is an excerpt from his website. Unfortunately for us he died prematurely due to the (I believe) appearance several times in front of the GMC but was always discharged.


    There is a further problem that when a patient is diagnosed as hypothyroid many patients receive too low level of thyroid replacement through servile reliance on thyroid chemistry with (often) cavalier disregard of how the patient feels accompanied by an implicit and bizarre belief that a level of thyroid hormone is a better index of wellbeing than the patient’s own view of his/her wellbeing.

    This situation has arisen from the mindless deification of ‘evidence-based medicine’ which usually means laboratory-based-medicine where one chooses the evidence which suits and ignores evidence which doesn’t suit. There is no evidence that the efficacy of thyroid replacement is better correlated with levels of thyroid chemistry than with the initial clinical picture nor clinical outcome and in a small pilot study the author has provided preliminary evidence of this assertion.


    You may have to take your own health into your own hands by sourcing your own thyroid hormones.

    (p.s. I'm not medically qualified but had undiagnosed hypothyroidism).

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