I don't post very often. Usually I manage to solve my dilemma through someone else's post (thanks everyone!) I hope someone can help me today please.
I had my full bloods done last month (Blue Horizon) and then yesterday I had my NHS 'annual' thyroid test (to keep the GP happy). GP has just called to say I am taking too much thyroxine and if I continue with my dose I will damage my heart.
I take 125/150 alternate days (have done since May 2018) and generally I tick along quite nicely. I also take daily supplements, Vit C, B Complex (Biotin not listed as ingredient), Zinc+Copper, Selenium, D3+K2, B12 spray, Magnesium Oil and following my June bloods I added Iron 10 spray with a big effort to add more iron to my diet. I also follow a GF diet.
I have been a bit up and down with thyroid symptoms over the last 6 weeks - but have put that down to the menopause? (I'm 49. Have been prescribed progesterone pill for the last 18 months). If anything, I would have said that my thyroxine needed to be increased with the way I have been feeling. GP has said the menopause has nothing to do with it. I'm scared to lower my dose just based on my TSH reading yesterday.
results from JUNE:
TSH: 0.16 (0.27-4.20)
T4 Total: 107.0 (66-181)
Free T4: 19.4 (12-22)
Free T3: 4.27 (3.1-6.8)
Anti-Thyroidperoxidase abs >600 (<34)
Anti-Thyroglobulin Abs: 1398 (<115)
Ferritin: 40.2 (13-150)
Magnesium: 0.91 (0.7-1.0)
Vitamin D (25OH): 135 (50-175)
Vitamin B12: 511 (>569 consider reducing dose)
Serum Folate: >45 (8.83-60.8)
results from YESTERDAY:
TSH: 0.13 (0.27-4.2)
T3: 4.3 (3.1-6.8)
T4: 21.2 (12-22)
Just to also say, my TSH has remained below 1 since Oct 2017 (0.14, 01.0, 0.16 etc) and no other GP has ever told me to lower my dose (you never get to see the same GP at my practice).
Is she right? Or is there something else glaringly obvious from these results. I'm a bit confused at the moment.
Thank you all x
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hyporeb
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Sorry, you’ll need a resident expert to help with results but my TSH is always 0.02. Discussed with my cardiologist as have AF and she wasn’t concerned in the slightest.
No, she is not right! The TSH does not tell us anything once on thyroid hormone replacement. You need to go by the free Ts, especially free T3 as that is the active hormone, and yours looks a little low to me.
Some people on T4 only (I was one of them) need FT4 levels at or slightly out of range to ensure there is sufficient T4 to T3 conversion. Your FT4 is not bad, but could be a little higher.
I´d say you´d most likely benefit from taking 150 mcg every day. If you convert well enough that would raise your FT3 along with your FT4.
The problem with most doctors is that they are completely ignorant when it comes to thyroid disease and treatment. They tend to go by the TSH only even though that is not even a thyroid hormone.
You should never accept lowering your meds based on a low TSH along with in range free T3 and T4! What you need to do is working on optimising your free Ts, especially your FT3.
What causes hyper symptoms, and potentially cardiac problems, is having too much T3, not a low TSH.
Tell doctor that TSH is NOT a thyroid hormone and it is o.k. to have it low or very low You've been diagnosed as hyPO, not hyPERthyroid. I also assume you allow a gap of 24 hours between your last dose of levo and the test and take it afterwards?
He should NOTadjust your dose due to your TSH when you're taking thyroid hormones.
So many doctors mistakenly make this mistake. It must have been how they were trained' (wrongly) but Thyroid Stimulating Hormone is from the pituitary gland NOT the thyroid gland. You can send him a copy of the following and highlight the appropriate para re TSH. Dr Lindner is an expert and its no wonder he cannot take on any more patients (in USA)as he must be inundated.
Excerpt:
"Dear Thyroid Patients: If you have thyroid gland failure--primary hypothyroidism--your doctor is giving you a dose of levothyroxine that normalizes your thyroid stimulating hormone (TSH) level. Abundant research shows that this practice usually does not restore euthyroidism--sufficient T3 effect in all tissues of the body. It fails particularly badly in persons who have had their thyroid gland removed. Unfortunately, the medical profession has clung to the misleading TSH test since the some physicians decided to do so in the 1970s. Doctors are taught that hypothyroidism is a high TSH--when it is, in fact, the state of inadequate T3-effect in some or all tissues. They are taught wrong. TSH not a thyroid hormone and is not an appropriate guide for either the diagnosis or treatment of hypothyroidism.
You have said exactly what I needed to hear! I've had such an argument with her (GP) this evening, ending with her still adamant I was to take 125 daily from tomorrow. GPs are a such battle and it's now so much harder on the phone than in person (there is zero chance of seeing a GP in person at my practice).
As I said in my first post - and like PurpleCat said, I really do feel like I should be taking 150 every day so I'm definitely going to try that - so that's a double whammy battle I've got.. not 125, not 125/150 but 150. I really can't see that happening but perhaps I'm just feeling a bit despondent tonight.
it makes me SOOOOO angry that medical professionals are so behind on this/refuse to listen. I am taking NDT and basically just monitor myself (although a consultant endocrinologist did accept i was doing well and TSH is always supressed when taking t3 so that helped me a lot going forward). My father is 61 and mentally very unwell due to years of undiagnosed hashimotos. He is taking levothyroxine and was still really fat, puffy and unwell- i had private bloods done, they showed he was deficient in lots of vitamins including D, his free t4 and free t3 were also low- so I started helping him take NDT very slowly and carefully. The ONLY thing his GP, psychiatrist and endo cared about was his TSH. It was honestly like talking to a brick wall. I spent hours researching and writing to them, but they treat me like I am some kind of nutter ( despite him having improved, lost 2 stone and looking much better.......)
Anyway, as has been said the TSH is not the be all and end all, there are studies I am sure which discuss free t3 and t4 being important as well as symptoms, but instead of reading up on this GP's seem to simply fixate on the TSH and it is out of date and patronising. good luck
I recently read an article which stated that those on levothyroxine only who come closest to euthyroidism at cellular level have a TSH between 0.03-0.3 (so much lower than most doctors are comfortable with).
Unfortunately, there is no way of measuring what goes on at cellular level, which makes it so important to go by symptom-relief rather than labs.
In the past couple of years, I have refused thyroid labs ordered by any other doctor than the one in charge of my thyroid care. The reason I give is always the same: it´s a waste of time and money, I know lab results will show my TSH is suppressed and my FT4 lower than on levo only since I take a T4 + T3 combo, doctors will not like that, there will be a discussion resulting in me finding a new doctor out of pure frustration, so why go through this pointless exercise at all...I invoke my right to refuse tests just like I have a right to refuse treatment. If I don´t see a doctor for my thyroid condition, I don´t want that doctor to interfere at all, and that includes ordering labs that they won´t know what to do with, except tell me to go back on levo and normalise my TSH.
That's why the advice, when getting blood test for Thyroid Hormones, that we allow a 24 hours gap between last dose, fasting (we can drink water) and test and take it afterwards. Also to get the very earliest appointment (TSH is at its highest then) as that seems to be the result that causes doctors adjust doses whilst ignoring clinical symptoms (I doubt they know any symptoms either). So we have to be 'self-taught', i.e. through this forum and take care of our own thyroid hormones if we want to be well and keep well.
I've been hypothyroid for 15 years, been to probably 12 doctors and not once has anyone said this. How do you manage on test days, however, when you take thyroid medication three times a day? Thoughts? I take a dose in am, midday, and mid afternoon. Thank you!
It is a pity all of the GPs and even endocrnologists don't seem to be aware of any symptoms and the above suggestions are through hypo members gradually learning how to diagnose themselves and assist them to get back to good health.
We used to be prescribed, NDT (natural dessicated thyroid hormones) made from animals' thyroid glands and from 1892 onwards people did not die an awful death and NDT is still popular today. There were no blood tests and patients got a trial of NDT.
Unfortunately the modern-day 'experts' (small e) have told lies in order to get this thyroid hormone withdrawn as they also did with liothyronine (T3 - in T3's case it was due to the enormous increase in cost by the Pharma Companies) leaving patients with no other options but levothyroxine (T4 alone) supposed to convert to T3.
Many thousands worldwide may do fine on levothyroxine alone, but not on this forum or other forums worldwide.
The experts fail to acknowledge that it is not a patients' fashionable choice but a life-giving hormone that restores their health and well-being but being deprived.
They haven't said this as they have not one clue about how to get the best results.
I followed a very good person, who was a scientist/researcher/doctor and Adviser to Thyroiduk before his accidental death. He said that Big Pharma was only interested in making profits and paid doctors to prescribe when new products went onto the market.
First of all, he would never prescribe levothyroxine (T4 alone) and did prescribe NDT (contains all the hormones a healthy gland would as it is made from animals' thyroid glands ) so more conducive to humans than the artificial hormone levothyroxine T4.
Dr Lowe stated 'one daily dose' allows all of the T3 receptor cells to be saturated and then it sends out 'waves' throughout the 24 hours.
T4 (levothyroxine) is an inactive hormone and has to convert to T3
T3 (liothyronine) is the Active Thyroid hormones needed in our millions of T3 receptor cells, brain and heart have the most.
I take my one daily dose when I awake, with one full glass of water and wait an hour before eating. Splitting doses can be complicated as I doubt we can swallow a dose at the same time every day and we aren't 'free' to have a normal life.
Reading your answer I am concerned about my gp lowering my dosage based only on a very low TSH result of 0.01. When I questioned if the T4 test should have been taken at the same time I was told TSH test is the only one needed. I 'm losing my hair and barely have eyebrows as well as the usual sluggish symptoms so I am reluctant to do this. My GP is usually very good and I really don't want to fall out with him, how can I get round this?
I have secondary hypothyroidism, after a diagnosis of lupus and I have been taking levo for about 15 years. Can he really reduce my dosage based on THS only?
I believe reducing dose - if TSH is low - is what they seem to have been told to do. I think they also believe if it is low that we've become hypERthyroid thus reduce dose to increase TSH.
If you've been taking levo for 15 years, tell him you don't want your dose reduced as you've been stable and feel fine.
Did you get your blood drawn at the earliest possible, fasting (you can drink water) and allow a gap of 24 hours between last dose and the test and take it afterwards? If so that's the right way to prepare. I doubt many doctors are aware that the TSH would vary each time if you had blood drawn every hour throughout the day.
If he insists, ask him to test your Free T4 and Free T3 first as both have to be towards the upper part of the ranges particularly the FT3. The 'free' tests are rarely taken.
I will also state I'm not medically qualified but had to diagnose myself the day after my GP phoned to tell me I had nothing wrong. He did not notice a TSH of 99 and when I got my own the next day another GP phoned to ask me how I got another test, I told her I had phoned for one to be left out for me when I was away from home. She then said you have hypothyroidism (I'd never heard of this word before) so come and get a prescription. I couldn't leave home but thankfully I had a husband who could get levo from chemist.
That's when my journey really began and was very grateful I became a member of Thyroiduk, that was before Healthunlocked began.
From the link above you can print-out the portion re TSH not being a thyroid hormone - for your GP.
Doctors usually mean well, they just lack training in these matters. I´ve heard that they spend about one day in medical school talking about thyroid disease, and they are then told that it´s an easily treated disease and that all that´s needed is to give enough levothyroxine to get the TSH in range. They are not told about alternative treatments at all in med school. So, when patients complain of remain symptoms despite a normal TSH, doctors tend to dismiss them as not being thyroid-related...how could they be, given that your TSH is normal...? So it all comes down to doctors´ appalling ignorance.
Doctors also don´t understand that we are all different. Just because a doctor has X number of patients happy with levo does not mean there is something wrong with me if I fail to get symptom-free on it. But doctors tend to do that...that is, compare you to other patients with no complaints and tell you that because they have other patients who recover on levo, whatever is wrong with you has nothing to do with your thyroid...since most won´t test free Ts, especially not the FT3 levels, and have no idea it´s what happens in your cells and tissues that´s important, it´s a recipe for disaster. Been there, done that. That´s why I´m in the process of "weaning off" all doctors so that I can self-medicate in the future and not have to have the same useless discussion every time a doctor freaks out at the sight of my TSH. My thyroid treatment and "abnormal" lab results make it impossible for me to have a normal relationship with a doctor. They all tell me I am hyperthyroid and risk a heart attack and osteoporosis and God knows what else. Sad but true.
Just to add, I need my ferritin up at around 100 for good T4 to T3 conversion.
I think if you work on building up the vitamins and minerals you'll increase your overall core strength, and your conversion will improve and your T3 increase.
Thankyou for your advice penny annie. I agree my ferretin needs attention. For me, ferretin seems to be the hardest to maintain, but I’m giving it a good go. I don’t feel I have ever been at optimum T4-T3 conversion and perhaps that’s why.
The medical profession seems to enjoy infantilising us. The danger is we get knocked into unhelpful psychological states ourselves and don’t respond in ways that serve us. I have come to expect a battle pretty much ever time I go near a doctor of any form. I’ve learned I have to understand as much as I can about whatever is going on with me and treat every interaction like its a business meeting. Keep my fears and frustrations hidden as much as I can. Stay calm and assertive. Give facts. Don’t take “no” for an answer.
It shouldn’t have to be like this!
A very long way of saying, take heart that you are not on your own.
One of our 'old-fashioned doctors' who treated patients' symptoms rather than a TSH result was hounded by the authorities for not 'toeing' the modern line for diagnosing and treating. For so doing, he appeared before the GMC quite a number of times but, unfortunately for his many patients - from all over the UK - he died through a heart attack. His staff were stunned and they had stated that every day working with Dr Skinner was a joy with lots of laughter etc.
Dr Skinner's patients were also bereaved.
He also gave Lorraine Cleaver back her life when she was on the point of suicide.
We are unaware of other hypo people who may have gone down this road but if levo isn't working for us, we can quite understand the desperation of not being listened to by doctors - many of who don't understand anything except to look at a TSH result. Symptoms now belong to a bygone age of medical personel plus the prescribing of NDT (natural dessicated thyroid hormones).
I'm taking levothyroxine at present too.. have done for approximately 10-15 years now..
I'm on 75 mg per day now..but recently it was almost half that dose.
I know everyone is different...but when I upped the dose the restless legs weren't so bad....
I had initially thought that the levothyroxine was causing the restless legs..?
For past week... restless legs had "gone away"....but I couldn't hold my breath as last night it was very bad again..
What have I been doing differently...?
I did eat gorgonzola cheese last night..(hadnt done for ages).....did that trigger?
As for the TSH levels...I'm rushing to work at moment..but I do have my blood test results somewhere which says what the recommended levels should be... also I'm sure there's a special website re thyroid problems...on health unlocked ?
I too take supplements and I know one mustn't over do these either..
I take iron tablet..rose hip..vit D spray..zinc..cod liver oil..co enzyme Q10... and last night I took an array of other things (as was desperate for sleep.)
L tyrosine..5 htp (with magnesium)..
Magnesium gel on legs.... CBD oil under tongue......
Eventually I fell asleep... usually just before dawn as I know it's circadian rhythm....as is thyroid hormone I believe..
You need to get your Free T4 and Free T3 tested and T3 should be in the upper part of the ranges. These two are rarely tested and you might have to get a private test if you so wish.
To get a private home blood test and this is the procedure to follow:-
Make sure you are well-hydrated a couple of days previously. If you take levothyroxine when you get up, then miss this dose and take it after the blood test. If you take a night dose, miss this and take after test and night dose as usual.
A Full Thyroid Function Test is:-
TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. Also request doctor to test B12, Vit D, iron, ferritin and folate - everything has to be optimal and deficiences can also cause symptoms. In order to recover our health, members will respond and are very helpful. We have to read, learn and ask questions and the majority on this forum know more than many, many doctors or even endocrinologists.
I have just found out when I changed doctors that my former GP had been misdiagnosing me for 11 years Too much thyroxine!! just repeat prescriptions Blood tests glanced at and occasional raise in prescription
Im not going into figure work Im still shocked that the disgusting attitude and mismanagement may have damaged my heart and could of in effect killed me When I first presented old doctor put on my, records "Gabbles away ten to the dozen Verbose as usual Lots of ailments Those should of been Giant Red 🚩 Flags
My palpitations got worse Hair loss was very distressing etc Also (and this further shows negligence) I had an accident at work She put on the insurance claim RTA Road Traffic Accident I was on the shop floor at the time - I lost the case
Cutting a long story short I have now been cut right back with dosage until the levels come down If you are in any doubt change your doctor Like me they may save your heart from damage or worse For the first time in 11 years Im slowing down, symptoms are reducing but its not it a good time at all My daughter has formally complained the practice have barely replied so she has told them to come back with when they can do better Good luck to you By the way Im not a stupid person neither do I think of doctors as being gods but I had worked at the practice as medical secretary and trusted them
My intuition told me something was not right
Many times I questioned them, Sick notes had Rheumatoid Arthritis Its OA I was told I had fibromyalgia then that was overturned
Please Question everything I wished I had been more persistent but I was too tired to be bothered but then one day my daughter said Mum your changing doctor Hopefully I will be cared for now
Do you have any recent blood results to share with us like the TSH, T4 and T3? I had "delusional" put on my GP records over 10 years ago and only found out about this comment last year. Doctors should not make personal remarks about patients but they do. One of the receptionists has also put "difficult patient" on mine as well which has annoyed me because the reason she has put that is because she refused to give me a print out of my blood results. I have asked my surgery to remove the remarks but so far they have refused which has annoyed me because it gives a wrong impression about my mental health. I actually had untreated hyperthyroid when the doctor wrote delusional and I had kept going back asking about my hair loss and other symptoms for over 2 years.
How did you find out what was on your actual notes, as the online ones show the barest minimum, not comments? I would be interested as to what they call me as I am very persistent and keep writing letters.
You need to contact the hospital trust you are under and they will send you a form which you fill in along with a copy of your passport or any other id you might have. They will then send you a package containing photocopies of all the letters and notes made by your consultant.
How we all deal with our thyriod problems over the years is very hard l was diagnosed with over active thyroid in 1993 after 5 years of blocks and a major operation needed l was given radioactive iodine it was like being shot to pieces l have at one point taken 275mg of thyrozine sometimes we are on swings and round abouts l thing l have learnt one thing in all these years now 64 is to go with you instinct many moves and different GP s does not help l once asked to see an endocrinologist he said if it has taken you over 20 years to get here why are you here now sometimes when the symptoms never really go away you try to see into the future for yourself this taught me some medical doctors have know idea how long we can struggle before we ask for help
I agree that many GPs have no clue about hypothyroidism at all. I saw quite a number of doctors - some private - and I got diagnosis of 'indigestion' - a 'web' in throat which would have to be removed or I would choke to death' - underwent an operation but I had no such thing. I assumed later - when I began to understand a bit of hypo - that what he saw was a swollen thyroid gland.
Do you follow this procedure when getting a blood test for your thyroid hormones and I am assuming you take one daily dose?
The earliest possible appointment, fasting (you can drink water) and allow a gap of 24 hours between last dose of hormones and the test and take it afterwards.
The aim is a TSH of 1 or lower (some doctors are unaware of this and think we've gone 'hypERthyroid' and reduce our dose. We need Free T4 and Free T3 in the upper part of the ranges - again I doubt if doctors are aware. T4 is inactive and has to convert to T3. T3 is the active hormone that permits our body to function as normal.
Uhoh. Your GP may be right! Hear me out. You’re pushing Levo too much when in actual fact you don’t convert very well. You look like you need T3 to go along with your Levo. So your GP is correctish! He just doesn’t understand what he’s looking at.
TSH has no bearing on thyroid health when supplementing so should be ignored!
Your FT4 levels are now 92% through range. I wouldn’t recommend raising anymore.
Your FT3 is only 32% through range. This is too low. Certainly optimise you’re Vits and minerals but I doubt it’ll raise your FT3 enough to make a difference.
For now I’d not lower Levo, keep as is, work on Vits,minerals and Think about looking for a private Endo who will be sympathetic towards prescribing T3.
I bet if you were on combo treatment you’d realise how much of a struggle life has actually been, hindsight will show that you’ve actually been wading through mud for years but that’s just what your used to.
NWA6 I see what you’re saying.. have often wondered myself whether I need T3 (especially after reading how it helps so many of you) I have felt for a long time that levo is just not quite hitting the spot however much I play around with the dose.
I gradually reduced from 125 to 100 when asked to last year, because my FT4 was more over range than is normal for me, (TSH low but no lower than it's been for over a decade) and GP scared me about my heart (over the phone!?-ie. no stethascope, and no problems with heart). I'm on NHS Levo only.
Long story short - I wish i hadn't agreed, and he reluctantly let me put it back up to 112 early this year.
It's 12 mths later now ..... and i'm only just stating to feel as well as i did when reduced. I agree with NWA6, ideally it may be that you (and i) would do better with a bit less T4 and a bit more T3. (a low TSH will reduce the deiodinase conversion of T4 to T3, and over range T4 may bring its own problems)
Some good discussion about Heart and Bone risks v Quality of life in these old posts:
And the study from which i choose to take my evidence of 'risks' of Low TSH ........( i'm not bothered unless it's below 0.04,and even if it is, the risks are still less than TSH of above 4 . And NHS are clearly OK with those since they wait until 10 to diagnose Hypo.)
I think it IS possible that menopause reduces how much Levo we need (as estrogen is related to thyroid hormone receptors) so that should be be considered, but only in relation to how well you feel on a dose, and if anything has changed on blood tests from your previous normal.
You could probably just try 120 everyday instead of 120/150 alternates. That would probably bring your TSH inside the range, which it should be really.
Are you taking T3 as well? You might want to consider a small dose of T3 to help your symptoms then allowing a slightly lower dose of T4.
T4 and T3 ideally need to be 75% up through the range to feel well. So you bloods also support the idea of slightly less T4 and perhaps some T3.
here is a letter you can amend to suit your 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 T3.
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 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 T3 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 T3 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 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 T4 and/or T3 for me as an individual. I don’t have the signs or symptoms of too much T4 and/or T3. My blood tests show I am not outside the reference range for T4 and/or T3. 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 <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 T4 and/or T3 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 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 T3/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
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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)
I need to point out that in the final (Appendix 2) section of your otherwise brilliant letter, contains a problem that needs addressing. The study was about T4, not T3 and all the references to T4 in the original have been changed to T3 in your version.
This is a really useful study , and shows that the risks of Low TSH (below 0.04)are mostly less than the risks for TSH above 4. But if it's used in this altered form, those presenting it in evidence will be discredited, as it's being used falsely.
I tried to write one letter for T4, T3 and T4/T3 that can be adapted by whoever wants to use it. I cant cover all individual situations so I suggest that the forum user alters the letter to suit their own circumstances.
I'm rather tied up in COVID knock on issues at the moment so I don't have time to review my model letters. I know that one of them has the wrong study in it but I don't have the time to go through my vast catalogue of research papers to find the correct one to replace it with.
Id be happy for you to make any necessary adjustments and forward them on to me or anybody else who needs it.
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)"
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Gp wants to reduce thyroxine
