I had an unexpected blood test last week, and had taken my morning dose. The results had the GP phone me, and told me he was going to reduce my dose. I explained that I had taken my dose that morning and that would have affected the results.
GP "it does not work like that. "
Me "ummm"
GP "this would account for your weight loss and feeling anxious and jittery"
Me "the weight loss has been going on for 6 months and I have never felt anxious or jittery. I consider the results good"
GP (did not pick up that I had seen the results) "well we go by a test we call TSH from your thyroid and it is showing too low, so I will reduce your dose and test again in 6 weeks"
What were the results? T4 and T3 in upper part of range, TSH 0.01.
6 weeks ago, same result apart from TSH was 0.02. Nothing was said 6 weeks ago....
I really think they read it as a 1 and a 2!
I have told him I take NDT. I do get a prescription for Levo as when I stopped the prescription before, I had a huge job getting it again when I could not get NDT. "You have been off it for ages so you dont have a thyroid problem"
He had made up his mind that the drop of 0.01 was the reason and nothing was going to change his mind! Grrrr!
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Your GP requires your consent to a reduced levo prescription. A lot of patients don't seem to realise this. He/she is there to advise, not dictate. Suggest you put your objection in writing.
I dont really care as I dont take them anyway, but thinking about it, he said over the phone that "I will reduce the dose, OK, and then test again". Then burbled on about something else, so presumably because I did not jump in and beg him not to, he took that as consent.
The bit that really got me was him making up symptoms that I never had, had never mentioned being jittery, but that is what the book said would happen so that is what happened! He had made up his mind what box I fitted in, and that was that.
Not specifically, but I was told some years ago by a doctor I trust that this kind of issue is covered by the right to informed consent to any course of treatment, and that includes any alteration to current treatment.
Refuse "surprise" tests in future. They need your informed consent so if they are doing blood tests for anything ask what they are testing, if thyroid is mentioned and you don't want it done because you've taken your dose or taken biotin in supplement (which will affect results) then refuse the thyroid test and say you will book it for a more convenient time.
I also had trouble getting my Levo reinstated too. I am medicating Armour which is too T3 potent for me and needed to reduce NDT and add some T4. Local surgeries have amalgamated and GP's don't know me, said I couldn't have hypothyroidism because I hadn't had Levothyroxine prescribed for five years!. .. till I located old health records of a scan showing atrophied gland and 125mcg Levo previously prescribed. .
I used to buy Levothyroxine as well as NDT. Sometimes it's just easier to buy everything!
Which, I would imagine, is precisely what they want patients to do.
I too have had immense difficulties trying to get an NHS prescribed brand of T3 which mimics as closely as possible the Tiromel T3 I tolerate well and have sourced and paid for myself. Unfortunately have had no success so it is back to buying my own T3.
So much for NHS.
As for testing - the results of which the doctors use to completely dictate our treatment (never mind the symptoms - not relevant as far as they are concerned) - mine are never done in the right way at the right time - so it is small wonder that my results look so "good", and they determine that I cannot be hypothyroid, when if I do my own bloods at home early in the morning and fasting they show that I am indeed hypo.
Misogyny (he'd never be so offhand with a man) AND tin ears AND buffoonery
🙄
I've told my GP that 'you said there was nothing else you could do' when I said I wasn't feeling any better. (At the top of the range, on 50mcgs levo, himself saying 'you're well, now, rejoice' ) When I told him why I was not fulfiling my levo prescription anymore (now on NDT and T3 which I source and pay for myself)
I find it scary the power they have my endo wrote a letter to my gp saying I had been in range since last June ( not true) And I was fine even though I’m not fine I feel so ill Every day and ache all over and no energy. She told my gp I needed counselling for my anxiety which I certainly didn’t mention I had. I’m thinking of writing to my endo to correct the mistakes she made but what’s the point x
I strongly believe that many physicians don't listen at all. They make up there mind about something and then grow deaf. Mind you, deaf is the wrong word and I don't know whether there even IS a word for what they do. You say red and they miraculously hear green and that's what goes into your record. I've heard that from so many people on so many subjects, not just thyroid. My friend was in excruciating pain when she started a medication and found in her record that she tolerated the medication very well and had only mild discomfort. How, on earth, does that happen? The only reason I can think of is that the doctor makes up their own story and becomes completely oblivious of reality.
No, write that letter. Your so called anxiety will be down in your file, and be pulled as a reason for everything that happens to you in the future - broken ankle? Anxiety. Cut finger, Anxiety! Most doctors seem to think the female half of the population go round in a constant state of near panic, and they can help the dear little things by giving them a nice pink pill. Write that letter!
I had an appointment with an endo at St Thomas last year and it was at 11, so I had taken my pills and had food that morning. The endo said to do blood tests and I insisted to come back the next morning to do them. I don’t understand, it was an endo talking not a GP and they still said it’s fine to do it like this. So yeah, the doctors don’t seem to think that’s a problem 🙄
HI here is a draft letter for your doctorI wrote it for someone else a few years ago but the basics are there.
please amend it to reflect your own circumstances
Your Address here
no_reply@example.com
Date:
Dr’s name here
Surgery address here
Post code here
Dear Dr *********
Unilateral Reduction of my 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 am 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 to make decisions about my health, 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:
A. The doctor and patient make an assessment of the patient’s condition, taking into account the patient’s medical history, views, experience and knowledge.
B. 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.
C. 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
D. 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 T3 and or T4 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 – not TSH.
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. 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 T3 and T4.
You did not quantify the risk of OP or AF in a way I could understand or at all. Therefore, you have not 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 T3 and T4.
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 to 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 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 T3 and/or T4. 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 <01 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 OP or AF but excess or low T3 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 T3 and T4 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 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 T3 and/or T4 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
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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
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 T3 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 T3 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 T3 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 T3 to have a low but not suppressed serum TSH concentration. (J Clin Endocrinol Metab 95: 186–193, 2010)
Absolutely Brilliant letter holyshedballs , but it's important to point out that Appendix 2 study has been misquoted , the study actually refers to findings on T4 replacement, not T3.
I have highlighted the misquoted parts below.
"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 onT3 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 T3 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 takingT3 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 T3 to have a low but not suppressed serum TSH concentration. (J Clin Endocrinol Metab 95: 186–193, 2010)"
All these T3 should say T4.
The original study is here in full academic.oup.com/jcem/artic... and it is an extremely useful one for proving long term "low but unsuppressed" TSH on Levo has no increased risk over TSH in range.
But i do feel it undermines the credibility of the letter to include a misquote on such an important matter as Levo / T3 .
Anyone noticing that this has been changed from the original will not be well disposed to take the rest of the case seriously.
I am due to see endo for review in 10 days time. Based on the letter that endo sent to my GP and copied to me after last appointment it is clear that they don't think I am hypo (I am - they just don't test for it properly) - they want to take me off T3 (usual blah blah blah about atrial fibrillation and osteoporosis - no EEG or dexascan done) and plan after next appointment to discharge me back to care of GP - AKA zero medical treatment
I am wondering should I send a tailored version of your letter to endo in advance of appointment???
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Follow up to 'gaslighting myself' post last week-I got tested
The lab ignored the doctor's test request
My Doctor is Ignoring My Concerns
Feel ignored by GP
