Your doctor wants to reduce or has reduced your dose of thyroid medication? Here is a letter that may help

[holyshedballs]

if you like it, please use it and amend it to suit your case. You can take it with you to help discuss your dose with your doctor. Or you can use it write to your own letter. Or not. Anything that will help

Your Address here

your email here [e-mail]

Date:

Dr’s name here

Address here

Post code here

Dear Dr *********

Reduced dose of thyroxine (T4)

Mental Capacity Act 2005

Good Medical Practice 2013

Good Medical Practice Consent: patients and doctors making decisions together 2008

Montgomery v Lanarkshire Health Board 2015

Bolitho v City and Hackney Health Authority 1993

I write following my appointment with you on ??/??/???? regarding your wish to reduce my ???mcg dose of T4.

During the appointment I told you that I did not want to reduce my dose of T4 because I feel good on this dose. I feel well, I can do my job to the best of my ability and I can contribute properly to my family life. I am not as irritable or fatigued. I can think clearer. I told you that my signs and symptoms return on a lower dose. You said that you wanted to reduce my dose because my Thyroid Stimulating Hormone (TSH) was too low and thereby there is of a risk of Osteoporosis (OP) and Atrial Fibrillation (AF). I showed/told you about research that shows that this not the case. See appendix 1 attached. I told you that you have no logical justification to reduce my dose of T4.

You did not carry out or refer me for an Electrocardiogram (ECG) test to establish a baseline or detect any abnormalities in my heart’s electrical activity despite your concerns about AF.

You did not refer me for a DEXA scan to establish a baseline or detect any abnormalities in my bone mineral density despite your concerns about OP.

You then reduced my dose of T4 to ??mcg.

Good Medical Practice

I am sorry to say that because you simply went ahead and reduced my dose against my wishes you did not comply with the preamble of the General Medical Council’s Guidance for Doctors Good Medical Practice 2013:

“The duties of a doctor registered with the General Medical Council”:

“Work in partnership with patients. Listen to, and respond to, their concerns and preferences. Give patients the information they want or need in a way they can understand. Respect patients’ right to reach decisions with you about their treatment and care.”

Mental Capacity Act 2005

During the appointment you did not assess me to determine if lacked Mental Capacity as laid out in section 3 of the Mental Capacity Act 2005. Therefore I consider that you have assumed that I have mental capacity in accordance with section 1(2) of the Act.

Consent: patients and doctors making decisions together/Montgomery v Lanarkshire Health Board 2015

As I have and you have assumed that I have mental capacity, I am sorry to say that you did not follow the model in the General Medical Council’s Code of Practice Good Medical Practice Consent: patients and doctors making decisions together. This is important because the medical negligence case of Montgomery v Lanarkshire Health Board 2015 stated at paragraph 93 that following the model at paragraph 5 of Consent: patients and doctors making decisions together is a legal obligation.

The Guidance at paragraph 5 of Consent… states

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.

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.

With regard to part A

I told you about my condition and that it is my experience that on a reduced dose of T4, my signs and symptoms will return.

You did not assess me for signs of over treatment or refer to my blood tests for T4 and or T3 for to see if they were over their reference ranges.

I showed/told you that there is research that shows that low TSH does not cause OP.

I showed/told you that there is research that shows that OP and AF more likely when T4 and Liothyronine (T3) are too low or too high.

I told you that I do not have signs or symptoms of hyperthyroidism such as palpitations, tremor, or sweating.

I told you that I get some of my information from the internet and patient support groups. Their Lordships and Ladyship in the Supreme Court in Montgomery v Lanarkshire Health Board 2015 said at paragraph 76 of the judgement:

“it has become far easier, and far more common, for members of the public to obtain information about symptoms, investigations, treatment options, risks and side-effects via such media as the internet (where, although the information available is of variable quality, reliable sources of information can readily be found)3 (and) patient support groups…It would therefore be a mistake to view patients as uninformed, incapable of understanding medical matters, or wholly dependent upon a flow of information from doctors.

The idea that patients were medically uninformed and incapable of understanding medical matters was always a questionable generalisation, as Lord Diplock implicitly acknowledged by making an exception for highly educated men of experience. To make it the default assumption on which the law is to be based is now manifestly untenable”.

I told you that you had no logical justification to reduce my dose of T4.

With regard to part B

You simply said that there is a risk of OP and AF due to low TSH. It has been shown that the risks of OP or AF is due to either too much or too little for the individual patient’s T4 and T3.

You did not quantify the risk of OP or AF in a way I could understand or at all. Therefore you have no adequately explained the options to me and the possible risks or benefits of staying on my dose, raising my dose, changing to Liothyronine (T3) or having a mixture of T4 and T3.

By not quantifying the risks of the above options to me personally, you have not given me the opportunity to weigh the risks and benefits of each option as required in part C of the GMC’s model.

You did put pressure in me to accept your decision by simply saying that you are reducing my dose.

With regard to part C

I have the mental capacity make decisions about my health. I have read the research referred to above. I understand that the risk of OP and AF is from having too much or too little T3 and/or T4 for me as an individual. I don’t have the signs or symptoms of too much T3 and/or T4. My blood tests show I am not outside the reference range for T3 and/or T4. I have weighed up the theoretical and mostly unfounded risks of staying on my dose against the actual risks of lowering my dose. I have also considered the non clinical factors of lowering or remaining on my dose, such as the impact on my family life and work life if my signs and symptoms recur, as they will do if my dose is reduced.

I have assessed the risks of OP and AF by lowering my dose to be much higher than remaining on my dose.

I have decided to remain on the dose I am on.

With regard to part D

Remaining on my dose is clearly of overall benefit to me. I feel well, I can do my job to the best of my ability and I can contribute properly to my family life. I am not as irritable or fatigued. I can think clearer. Reducing my dose will result in harm to my health by the return of my signs and symptoms. It will also negatively impact on my work, private and family life. Further, as described above, there is no reliable evidence that low TSH actually causes OP or AF.

If you are still of the opinion that you want to reduce my dose to ??mcg, please explain how remaining on my current dose would not be of overall benefit to me in writing. It is important that you quantify the risk of OP or AF to me as an individual in your written explanation. Good Medical Practice at paragraph 47 says that you must treat me an an individual. Please be aware that there is another body of responsible medical opinion that agrees with maintaining a dose of thyroid medication that suppresses TSH without causing thyrotoxicosis and had been recognised as such by the General Medical Council.

Lack of logic to reduce dose of T4

I am unaware of any guidance to unilaterally reduce a patients dose of T4 and/or T3. Such guidance does not appear in the British Thyroid Association’s statement on the management of primary hypothyroidism. Recommendation 7 states:

“Although fine tuning of serum TSH levels within the reference range may be indicated for individual patients, deliberate serum TSH suppression with high dose thyroid hormone replacement therapy (serum TSH <0.1 mU/L) should be avoided where possible as this carries a risk of adverse effects such as cardiac rhythm disorders including atrial fibrillation, strokes, osteoporosis and fracture (1/++0). As an exception, patients with a history of thyroid cancer may require deliberate suppression of serum TSH if there is a significant risk of recurrence”.

It does not recommend that ALL patients on thyroid hormone replacement therapy unilaterally have their dose reduced. It states “where possible”.

This recommendation is now out of date following research that low TSH is not a factor in OsteoPorosis or Atrial Fibrillation but excess or low T4 and/or T4 is. To blindly follow this out of date statement is in conflict with a doctors legal obligation to follow the model consultation in Good Medical Practice Consent: Patients and doctors making decisions together.

The Royal College of General Practitioners Curriculum states at 3.17 that a GP should:

“Recognise your central role as a primary care physician in managing diabetes mellitus and hypothyroidism”,

and

“Recognise the potential for abuse of thyroxine and propose strategies to reduce dosage”.

I can assure you that simply being on a dose that makes me well is not abusing thyroxine especially if my blood tests for T4 and T3 are within their reference ranges. Any strategy to reduce dosage must be logical. This is confirmed by the medical negligence case of Bolitho v City and Hackney Health Authority 1993 which states that a doctor’s actions must be logical even if it is supported by a responsible body of medical opinion. For the reasons above, I do not believe that your action to reduce my dose without any evidence or following the BTA statement contrary to my well evidenced and argued wishes to remain on my dose of T4/T3 is logical.

If you have concerns about me suffering from AF or OP please refer me to a cardiologist for an ECG test and an Orthopaedic specialist for a DEXA scan.

I hope you reconsider your decision to reduce my dose of T4 and/or T3 and restore it to the level that makes me feel well and contribute to my work and family life. I value my actual health more that an unfounded and unquantified potential risk in the future so much that if my dose is not maintained or restored, I will take this matter further by way of complaint to the Clinical Commissioning Group, the General Medical Council or by a claim for negligence.

Yours Sincerely

Sign here

Type your name here

Appendix 1

Thyroid Stimulating Hormone and Bone Mineral Density:

Journal of Bone and Mineral Research, Vol. 33, No. 7, July 2018, pp 1318–1325

DOI: 10.1002/jbmr.3426Evidence From a Two-Sample Mendelian Randomization Study and a Candidate Gene Association Study

Nicolien A van Vliet,1 Raymond Noordam,1 Jan B van Klinken,2 Rudi GJ Westendorp,1,3

JH Duncan Bassett,4 Graham R Williams,4 and Diana van Heemst1

1Department of Internal Medicine, Section of Gerontology and Geriatrics, Leiden University Medical Center, Leiden, the Netherlands

2Department of Human Genetics, Leiden University Medical Center, Leiden, the Netherlands

3Department of Public Health and Center for Healthy Aging, University of Copenhagen, Copenhagen, Denmark

4Molecular Endocrinology Laboratory, Department of Medicine, Imperial College London, London, UK

ABSTRACT

With population aging, prevalence of low bone mineral density (BMD) and associated fracture risk are increased. To determine whether low circulating thyroid stimulating hormone (TSH) levels within the normal range are causally related to BMD, we conducted a two-sample Mendelian randomization (MR) study. Furthermore, we tested whether common genetic variants in the TSH receptor (TSHR) gene and genetic variants influencing expression of TSHR (expression quantitative trait loci [eQTLs]) are associated with BMD. For both analyses, we used summary-level data of genomewide association studies (GWASs) investigating BMD of the femoral neck (n.32,735) and the lumbar spine (n.28,498) in cohorts of European ancestry from the Genetic Factors of Osteoporosis (GEFOS) Consortium. For the MR study, we selected 20 genetic variants that were previously identified for circulating TSH levels in a GWAS meta-analysis (n.26,420). All independent genetic instruments for TSH were combined in analyses for both femoral neck and lumbar spine BMD. In these studies, we found no evidence that a genetically determined 1–standard deviation (SD) decrease in circulating TSH concentration was associated with femoral neck BMD (0.003 SD decrease in BMD per SD decrease of TSH; 95% CI, –0.053 to 0.048; p.0.92) or lumbar spine BMD (0.010 SD decrease in BMD per SD decrease of TSH; 95% CI, 0.069 to 0.049; p.0.73). A total of 706 common genetic variants have been mapped to the TSHR locus and expression loci for TSHR. However, none of these genetic variants were associated with BMD at the femoral neck or lumbar spine. In conclusion, we found no evidence for a causal effect of circulating TSH on BMD, nor did we find any association between genetic variation at the TSHR locus or expression thereof and BMD. © 2018 The Authors. Journal of Bone and Mineral Research Published by Wiley Periodicals, Inc.

Appendix 2

Serum Thyroid-Stimulating Hormone Concentration and Morbidity from Cardiovascular Disease and Fractures in Patients on Long-Term Thyroxine Therapy

Robert W. Flynn, Sandra R. Bonellie, Roland T. Jung, Thomas M. MacDonald, Andrew D. Morris, and Graham P. Leese

Ninewells Hospital and Medical School (R.W.F., R.T.J., T.M.M., A.D.M., G.P.L.), University of Dundee, Dundee DD1 9SY, United Kingdom; and School of Accounting, Economics and Statistics (S.R.B.), Edinburgh Napier University, Edinburgh EH14 1DJ, United Kingdom

Context: For patients on T4 replacement, the dose is guided by serum TSH concentrations, but some

patients request higher doses due to adverse symptoms.

Objective: The aim of the study was to determine the safety of patients having a low but not suppressed serum TSH when receiving long-term T4 replacement.

Design: We conducted an observational cohort study, using data linkage from regional datasets between 1993 and 2001.

Setting: A population-based study of all patients in Tayside, Scotland, was performed.

Patients: All patients taking T4 replacement therapy (n 17,684) were included.

Main Outcome Measures: Fatal and nonfatal endpoints were considered for cardiovascular disease, dysrhythmias, and fractures. Patients were categorized as having a suppressed TSH (0.03 mU/liter), low TSH (0.04–0.4 mU/liter), normal TSH (0.4–4.0 mU/liter), or raised TSH (4.0 mU/liter).

Results: Cardiovascular disease, dysrhythmias, and fractures were increased in patients with a high TSH: adjusted hazards ratio, 1.95 (1.73–2.21), 1.80 (1.33–2.44), and 1.83 (1.41–2.37), respectively; and patients with a suppressed TSH: 1.37 (1.17–1.60), 1.6 (1.10 –2.33), and 2.02 (1.55–2.62), respectively, when compared to patients with a TSH in the laboratory reference range. Patients with a low TSH did not have an increased risk of any of these outcomes [hazards ratio: 1.1 (0.99 –1.123), 1.13 (0.88 –1.47), and 1.13 (0.92–1.39), respectively].

Conclusions: Patients with a high or suppressed TSH had an increased risk of cardiovascular disease, dysrhythmias, and fractures, but patients with a low but unsuppressed TSH did not. It may be safe for patients treated with T4 to have a low but not suppressed serum TSH concentration. (J Clin Endocrinol Metab 95: 186–193, 2010)

[SlowDragon Administrator]

Great letter 😀

[Jazzw]

I get the intention, I really do.

Unfortunately, I really don’t think that letter will have any effect other than getting you struck off the patient list at your GP’s surgery.

For all we often malign GPs here, I do know that most of them simply don’t have the time to read something like this. The good ones certainly don’t - and the bad ones would simply file it in your notes and take even less notice of you the next time you return. Most doctors don’t take too kindly to being told you know better than they do - even if it’s true.

[trelemorele in reply to Jazzw]

They won't struck you off but I agree with the rest of your reply.

I'm one of the patients who submit similar letters (not as smart as this one but pretty much pointing out how stupid, literally, my GP is) I haven't been stuck off for that reason.

I definitely will use this template in the future communication with GP, that I'm sure of!

[holyshedballs in reply to Jazzw]

You can tone it, down remove ceratin parts, do what you want with it.

They cant strike you off for writing a letter to them especially if you wish to complain about them - or compliment them. They have to have a good reason to. Dont be afriaid of the GP, you have rights too. The GMC say they want patients to respond to their doctors and letmthem know whwer they are going wrong. So does the NHS.

Yes youare right that most docors dont listen to patients but the main part of that is that doctors SHOULD listen to their patients. Its a requirement of Good Medical Practice. We as patients shouldnt just accept the doctor reducing our dose for some unfounded risk.

[Hidden in reply to Jazzw]

Exactly but the letter may help some people maybe not everyone can put together a letter. this was only meant in a good way. Your point, however, is a valid one, that's why I treat myself, less stressful.

[bantam12]

I agree with Jazzw, that would end any relationship between Dr and patient.

[holyshedballs in reply to bantam12]

Hi bantam12

This is just my version you can modify it, cut it down, etc.

The point is to give patients resources and confidence to challenge doctors who act unprofessionally and against the patients interests. A good doctor will follow Good Medical Practice and work with a patient to obtain optimum health. Bad doctors dont and really, in my view, patients should change the doctor or change the doctor. i.e. if the doctor wont change his/her practice when seeing you then you should change the doctor. It would be preferable that the patient/doctor relationship is maintained.

But, in my view, if the doctor reduces a dose of medication from that which is safe and makes a patient well to a dose that makes a patient unwell, that doctor has broken the relationship, as seen on many posts on this forum. If they wont listen to logic and law, my view is that it is time to get another GP/Endo and makea formal complaint about the unprofessional doctor.

[SlowDragon Administrator]

See paragraph four here ......patient centred approach, with full engagement and shared decision making

beta.gov.scot/binaries/cont...

[Jazzw in reply to SlowDragon]

Is there an equivalent document for England, Wales and N Ireland?

[SlowDragon Administrator in reply to Jazzw]

See pages 28-30

england.nhs.uk/wp-content/u...

[Jazzw in reply to SlowDragon]

So that’s a no then. No mention of patient-centred approach there...

[SlowDragon Administrator in reply to Jazzw]

It says you must be referred back to endocrinologist before T3 stopped

[Jazzw in reply to SlowDragon]

Yes. But that’s not quite the same thing, is it?

Patient: Mr/Ms Endo - I feel so much better on T3.

Endo: Yes, but the lab test results show your TSH to be suppressed even though I can see with my own eyes how much better you are so I must take you off it.

Sigh.

[holyshedballs in reply to SlowDragon]

Hi SlowDragon,

This is a report on the findings of the consultation about items that should not be routinely prescribed in primary care, published on 30th November 2017. In other words they are saying that GPs should not ROUTINELY prescribe these items, including Liothyronine.

The Guidance england.nhs.uk/wp-content/u... was updated also on 30th November 2017 so that the entry for liothyronine reads:

"Liothyronine - We received a significant number of responses during the consultation around liothyronine. The main recurring theme – particularly from patients and organisational bodies - is that liothyronine is an effective treatment which is invaluable to patient wellbeing, quality of life and condition management. We also heard that a small proportion of patients treated with levothyroxine continue to suffer with symptoms despite adequate biochemical correction. The joint clinical working group considered the consultation feedback and therefore decided that liothyronine should still be prescribed for a small cohort of patients. The joint clinical working group changed the recommendations so that initiation of prescribing of liothyronine in appropriate patients should be initiated by a consultant endocrinologist in the NHS, and that deprescribing in ‘all’ patients is not appropriate as there are recognised exceptions".

Important points

1) liothyronine should still be prescribed for a small cohort of patients

2) initiation of prescribing of liothyronine in appropriate patients should be initiated by a consultant endocrinologist

3) in the NHS

4) deprescribing in ‘all’ patients is not appropriate as there are recognised exceptions

The actual recommendation reads:

 Advise CCGs that prescribers in primary care should not initiate liothyronine for any new patient

 Advise CCGs that individuals currently prescribed liothyronine should be reviewed by a consultant NHS endocrinologist with consideration given to switching to levothyroxine where clinically appropriate.

 Advise CCGs that a local decision, involving the Area Prescribing Committee (or equivalent) informed by National guidance (e.g. from NICE or the Regional Medicines Optimisation Committee), should be made regarding arrangements for on-going prescribing of liothyronine. This should be for individuals who, in exceptional circumstances, have an on-going need for liothyronine as confirmed by a consultant NHS endocrinologist.

Important points

GPs not to initiate T3

Consultant Endo to review patients

to switch to T4 where clinically appropriate (those already on T3 are clinically appropriate to me)

CCGs to make a local decisions regarding on going arrangements to prescribe Liothyronine (not to NOT prescribe it).

This is not a ban on Liothyronine. It is clear that NHS England is still recommending Liothyronine for those who need it but not by a GP.

My letter above is about the process that GPs are unilaterally reducing the dose of T4 without going through the proper procedure. if GPs are de prescribing T3 they shouldn't be doing it, an Endo should do it.

Thyroid Trust, Thyroid UK et al. are talking to the noble Lords about the misinterpretation by CCGs in their own recommendation to not prescribe liothyronine and tell patients to buy it privately contrary to this NHS guidance/recommendation.

[SlowDragon Administrator in reply to holyshedballs]

I know we get hundreds on here had T3 stopped, very very often without any warning.

Dose of Levothyroxine not being discussed with patients etc etc

But if they are going to wish to withdraw T3 prescription (due to cost) then they MUST refer patients back to endocrinologist.

Obviously you still may not get a T3 friendly endo.

Most seem more interested in not upsetting CCG than actually listening to patients.

If GP does not refer back to endo, then reporting them to GMC is possible next step.

We have to target any CCG like Brighton that imposes blanket ban. Or Somerset CCG that prides its self in being 5th lowest prescriber of T3

[holyshedballs in reply to SlowDragon]

The letter can be adapted as Good Medical Practice applies to Endos as well as GPs. they have to follow paragraph 5 of "Consent:patients and doctors making decisions together" - by law. see McGregor v Lanarkshire Health Board 2015.

This is why my letter or anybody else's is important -so that patients have the facts on how doctors should behave, how to "stand up" to those who behave badly and what to do if they don't follow procedure.

[SlowDragon Administrator]

I think many people will find it helpful.....though they may need a new GP as well

[holyshedballs in reply to SlowDragon]

I wrote a similar letter of complaint to my local hospital about an Endo who did a psychic examination for a GP but I was not struck off.

The GMC have guidance on striking a patient off - "Ending your professional relationship with a patient".

Paragraph 4 states: You should not end a professional relationship with a patient solely because of a complaint the patient has made about you or your team, or because of the resource implications of the patient’s care or treatment.

Paragraph 5 states:

Before you end a professional relationship with a patient you should:

warn the patient that you are considering ending the relationship

do what you can to restore the professional relationship

explore alternatives to ending the professional relationship

discuss the situation with an experienced colleague or your employer or contracting body

and you must be satisfied that your reason for wanting to end the relationship is fair and does not discriminate against the patient

[Jazzw in reply to holyshedballs]

A psychic examination? Wow. That’s definitely out there...

Did he/she organise a seance? Spin the bottle?

[thyroidquest]

Hi, many thanks for this. The abstracts state: "Conclusions: Patients with a high or suppressed TSH had an increased risk of cardiovascular disease, dysrhythmias, and fractures" and the BMD article only looks at low normal TSH..not suppressed TSH: "To determine whether low circulating thyroid stimulating hormone (TSH) levels within the normal range are causally related to BMD". So could this evidence actually backfire? Couldn't an endo use it to support their argument? Did you use this letter and what kind of response did you receive? Thanks!

[holyshedballs in reply to thyroidquest]

You have a point but the second paper is useful id TSH is low but not suppressed.

I didn't want to drag the letter out with lots of papers BUT

The first paper that shows that excess TSH does not have a direct effect on BMD.

There is new research that shows that excess TSH does have a direct effect on the heart causing Atrial Fibrillation.

I can't find any evidence to show that low or suppressed TSH has a direct effect on the heart.

The point is that doctors are measuring the wrong hormone and adjusting doses based on that wrong hormone. As (it looks to me) excessive T4/T3 causes OP and AF doctors should measure T4/T3 not TSH which (so far) doesn't have an effect on these tissues