I've finalised what I hope may be useful to some here as a document to leave with your doctor. On occasion it might ring bells.
To the doctor
To the doctor
. You and I are meeting to discuss my health problem that I suspect (know) is associated with hypothyroidism. I’m sure we both want to come to a conclusion and treatment that best suits my particular state of health. Therefore before we start, I’d like to put in front of you the ideas and concepts that modern thinking on thyroid function has developed. At the moment, it seems that TSH alone is used to monitor treatment and that thyroxine (T4) is regarded as the universally satisfactory treatment. It seems also that a decision as to satisfactory treatment by T4 is to place the patient’s TSH anywhere within the reference range for healthy people. This attitude is merely a statistically based one, and takes no account of my individuality in terms of my natural FT4, FT3 and TSH levels which all act together to define my unique health.. I put the following points to you:
1) In health, each person has their own unique set of blood concentration values for TSH, FT4 and FT3 which together interact to define their healthy state. T4 is the relatively inactive precursor of T3, the active hormone that defines health. Especially for FT4 and FT3 the values throughout life occupy a restricted region of the reference ranges typical of the individual, which are far more closely drawn within the range than the reference range that describes everyone. TSH is more variable, as throughout a day its values alter significantly, with a peak in the early hours of the night, thereafter declining through the day until the next peak. It is therefore important at what time of day TSH is measured
.
2) Therefore, as nearly as possible, therapy in disease should attempt to regain the values (most importantly) for FT3 that originally applied in health. After all it is the T3 in the body that drives metabolism and neither T4 nor TSH.
3) But we have a problem, because we don’t know what that was, because it wasn’t measured when we were healthy. Inevitably therefore finding the original situation is a matter of trial and error. But it is not acceptable merely to “normalise” my blood levels somewhere within the normal range, because I only occupy a tight region typical for me. Also we have a difficulty in that the doses of T4 are very crudely determined in 25 ug steps, whereas my healthy situation is much more closely defined.
4) So there arises a serious question. If I had an FT3 and FT4 unique to myself in health, which we don’t know, how am I to regain this by therapy on T4? Surely only by trial and error and my response to therapy. But since we’ve agreed that my optimum values are not the same as the entire range, it can’t be logically right to just put me in the normal range for any parameter (TSH, FT4 or FT3) and say that I am properly treated. It’s more complicated than that (open-mouthed doctor stunned by irrefutable logic !).
5) I’d now like to propose what I think you’ve been taught. That TSH from the pituitary stimulates the thyroid gland to produce T4. The T4 then goes into the circulation and is converted to T3 (the active hormone) as suitable for health. But my thyroid is damaged (lost). So you give me T4 to replace the lost T4 no longer supplied by the thyroid. In doing this you restore my TSH to what it was before I became ill. Therefore, get my TSH back somewhere in the normal range and all must be well (in ALL cases). Therefore all you need to measure is TSH.
6) Unfortunately, new studies show that is completely wrong. First TSH stimulates the thyroid to produce BOTH T4 and some T3. Both enter the bloodstream and some T4 is converted to T3 as you were taught. But now the FT3 that governs my health is made up from two sources, the thyroid and body conversion. And the thyroid’s direct contribution is very important even though it is apparently a minor contributor to T3 production overall.
7) The T3 produced by my thyroid direct is an important controller of the body’s conversion of T4. As my thyroid declines, it tries to keep its production of T3 as close to normal as possible, even though my T4 is lowered. So the level of FT3 from thyroid and body conversion is kept as close to natural as possible both by the thyroid’s attempt to maintain its T3 production and increased T4-T3 conversion rates by the body.. Only when the thyroid has virtually gone, does the whole system collapse and body conversion of T4 by therapy has to take over completely.
8) So, we have two different situations: one where I’ve got some thyroid left, and another where I have none at all. The treatment of these situations is entirely different. But we don’t know which situation I’m in (for those who haven’t had their thyroid completely removed/destroyed). So once again treatment has not to be by rigid biochemistry, but by trial and error until I achieve something closer to original health. This is subjective and not objectively obtained by biochemical results.
9) We are all different. Our thyroids are different in size, and differ in their production of T4 and T3. Some people’s thyroids produce more T3 direct and others less. The combination of this T3 and body T4 conversion sum up to produce health FT3 levels. When we lose our thyroid, then we lose the T3 produced by it. This has to be made up by extra T4 conversion from T4 therapy. But to get to this state, more T4 has to be given than the thyroid produced in health, to force the body’s conversion to make up the difference. This, because T4 suppresses TSH, will give a lower TSH to achieve this than when in health. Therefore the TSH range suitable for health is unsuitable for therapy. Values lower than the healthy range are therefore suitable and ineivtable for proper treatment control. In certain cases, undetectable TSH may occur if the conversion capability of the patient is sufficiently restricted – but given normal range FT3 this does not matter. Suppressed TSH when one has some working thyroid left means something quite different (and undesirable) as opposed to those with no working thyroid at all.
10) If someone, whose thyroid T3 constitutes a higher proportion of the total T3, loses their thyroid entirely, then the body T4 conversion from T4 mono therapy may not be able to make up for the loss of thyroid T3, however much T4 is offered. It is this minority of subjects who can never sufficiently recover using T4 alone. These are the patients who will need T3 in some form in therapy to restore the FT3 to their unique healthy level. I believe I may be one of these. This can be discovered by measuring my FT4 and FT3 on a given T4 dose. If the FT4/FT3 ratio is above 4.5/1 then this gives suspicion I am not converting the T4 to T3 sufficiently well and T3 may also need to be given.
11) All these complications mean that simply using T4 therapy to put me somewhere in the "normal" range for TSH or FT4 is insufficient. FT3 is the measure to use in therapy control as you and I do not know the exact level of thyroid destruction (omit if not applicable to you). It really is a matter of trial and error and more liberalism in therapy choices. Not only T3 but desiccated thyroid extract should not be ruled out. There are allegations that DTE is not well controlled as to hormone content. This is not true as the product has to obey the various Pharmacopeias and has adequate quality control by rigid requirements. Furthermore the allegation that DTE does not contain the “right” relative quantities of T4 and T3 is also a red herring. T4 mono therapy is even more nonphysiological than that, but is the preferred mode of treatment.
You cannot both argue that DTE is nonphysiological when T4 is even more so.
12) I hope these comments will help us both to achieve a satisfactory outcome as regards my treatment and reattainment of health
But how do you get a busy GP to actually take the time to read and thoroughly digest it? My last GP was very nice and tried to work with me to an extent (always going by TSH of course), but whenever I handed him any paperwork and asked him to read it, he simply would not even take it.
I've sent info in advance, taken it with me... you name it - recently told that 'They don't get paid for reading it'. Seriously, couldn't make this up!
They're paid to provide competent care, and if reading something relevant means they gain the competence to treat a particular patient, then read it they must! (Try it and see 😏)
I'm not sure with chronic issues that they've any clue about 'competent' or 'care'.
Thank you Hillwoman, I already have... to the point that I have to keep doing it because they simply ignore it all, then they point to the documents [mine and references]... and question [via the practice manager - who said they're not paid to read stuff] why I keep going back to the past!? Err, the same ailments, because no one is listening and things are getting worse... and worse. I now take a sheet and talk them through the copy given to them... the list is growing.
I know, worst thing is as part of one of my work roles was to advocate for those being put in dreadful situations by medics... I know the ropes but it just doesn't work well when it's you. My best advocate colleague has himself become quite ill... 'Nowhere to Run'
I'm working on my energy levels with a wadge of supplements [big heart guys and Dr M] for that purpose... hopefully, by Spring 2019, all guns blazing, eh?
Juat because a doctor does something, it does not make it right that we should just accept it. diogenes gift is a brilliant explanation of the lack of logic in treating a patient according to TSH values. I would read it out to him/her and ask him/her if s/he understood it. Patients have to stand up for them sleves and challenge illogical behaviour.
Unfortunately my GP refuses to consider my paperwork or notes, refuses to confirm or supply copy letter on my records from Endocrinologist, instead advising I should have been told to ask for a copy at appointment, so contact Endo's secretary. She refuses to do an achilles reflex test, saying, 'what's the point?' Confirms B12 no longer on her prescription list, ignores low Vitamin D level, sees no point in giving up gluten if you have Hashimoto's. 'WHY?' she asked, producing huge shoulder shrug. However she smiles a lot, tells me she knows nothing about thyroid and confirms I'm the perfect patient. She'll learn a lot. I'm getting there.
Sounds like it's time to find another doctor. Perfect patients don't get the best care. And I believe patients are belittled by being called the perfect patient. Might it serve the doctor's agenda to keep patients in their place by inferring that 'perfect patients' are more desirable?
I have at times been the patient from hell-no tantrums but stubborn and pushy. Maybe not politically correct but I usually get better care in the end.
It's sad though because for every skirmish won there's probably another one not too far down the road.
This sounds just like my GP, for a young doctor she is incredibly resistant to any ideas that didn't come in the 'How to be a Doctor' book that they all seem to be trained from.
To be honest I don't think they're trained to do much! Apart for trying to dish out antidepressants, statins, diabetes drugs, BP tablets, etc. the run of the mill stuff that does not require much intelligence and no thought!
I told my GP last month that my impression was that doctors were trained only to deal with emergencies, that they wait until things get so bad/are so obvious that it then becomes a serious problem for patients who desperately need help before it becomes an emergency. After all, when it's an emergency it's pretty drastic, either you make it or you don't, and if you do, many patients can remain seriously handicapped. Useless lot!
Very true, my GP has suggested anti-depressants, PPIs, Mebeverine for digestive issues and something I can't pronounce for IBS. If I took her advice I wouldn't have to worry about weight gain, I'd be too full of pills to eat anything!!!!
I think GP practices are past their 'sell by' dates! It's worrying that more money is going to be put in their direction if Boris is re-elected... Realistically, how can a GP (who probably didn't make it to be a hospital consultant) know about all ailments... it's time the system was overhauled! There should be more use of PCs..eg feed in your symptoms/ medications etc...get a print out of tests that should be done & possible causes...you then hand it to the medic. If youre not pc savvy, you could be assisted by an admin worker.
The technical answer is that the doctor SHOULD read any evidence you give him.
Why?
Because the General Medical Council say so.
The GMC says so in their general doctors code of practice Good Medical Practice 2013 at para. 16b "You must provide effective treatments based on the best available evidence".
Evidence is anything put in front of a "decision maker". The decision maker has to decide on how much weight to put on evidence put in front of him/her. With regard to guidelines, the Court gives help on weighing guidelines in Ali V Newham 2012. So if a patient presents a peer reviewed paper such as the papers produces by Diogenes and his colleagues that should carry weight. However, Diogenes's "gift" won't carry as much weight as peer reviewed paper. It is an accurate representation of the current situation so doctors should read it.
The GMC also say at para. 49 "You must work in partnership with patients. Listen to, and respond to, their concerns and preferences..."
The GMC elaborate on this in their specific code of practice "Consent: patients and doctors making decisions together" 2008. The GMC say: at para 5a "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".
This is important. This is where a doctor should read any evidence put in front of them. If s/he doesn't, then s/he is not complying with the GMC's code of practice.
if you are unsure about giving information to a doctor the Supreme Court, the highest in the land, acknowledged the level of information patients have about their condition has radically changed.
At para. 76 the Supreme Court said: "Other changes in society, and in the provision of healthcare services, should also be borne in mind. One which is particularly relevant in the present context is that 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), 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...To make it the default assumption on which the law is to be based is now manifestly untenable.
At para. 81 the Supreme Court said: "The social and legal developments which we have mentioned point away from a model of the relationship between the doctor and the patient based upon medical paternalism. They also point away from a model based upon a view of the patient as being entirely dependent on information provided by the doctor. What they point towards is an approach to the law which, instead of treating patients as placing themselves in the hands of their doctors (and then being prone to sue their doctors in the event of a disappointing outcome), treats them so far as possible as adults who are capable of understanding that medical treatment is uncertain of success and may involve risks, accepting responsibility for the taking of risks affecting their own lives, and living with the consequences of their choices.
The Supreme Court is telling doctors and patients that patients do have knowledge of our condition and doctors have a duty to accept that.
So what do we do if (or more likely, when) a doctor doesn't work in partnership with us and doesn't accept evidence put in front of him?
I suggest that the patient calmly explains t the doctor the above and asks that the doctor reconsiders his/her position.
if the doctor doesn't then my view is that the patient then starts to go down the complaint road. it is daunting but this site has bundles of supporting evidence that should make all but the most stubborn doctor change their mind.
It is bad enough to find out that most doctors/endocrinologists are poorly trained in the diagnosis and treatment of people who have hypothyroidism. That's why we are forced to present scientific evidence to try to educate them whilst we, the patient, struggles to get them to make sense of their treatment doses whilst they insist that we are 'in range' and don't need an increase in dose and ignoring any or all of our clinical symptoms. They know none at all and believe it is the TSH that's the most informative. This is untrue. The aim is sufficient thyroid hormones that relieve all symptoms, i.e. TSH of 1 or lower with FT4 and FT3 in the upper part of the ranges.
My sister and I have Hashimoto's as did my father and his siblings. In the last 2 years I've found a balance of health - 25 years after original diagnosis - and really don't want my children to hit the same treatment walls as my long and winding thyroid journey.
Point 3 - not knowing what my healthy TSH / T4 / T3 levels *were* is a regret I've often shared with my GP. She agreed to submit bloods to identify my daughter's "healthy" levels when she turned 18. As her TSH was in range, the lab didn't test T3/T4...
Now both children are over 18, as a family we've talked about getting TSH / T4 / T3 via one of the fingerprint tests. Could you recommend the most appropriate to identify their healthy thyroid baselines?
Both Medichecks and BlueHorizons can help. They have a variety of tests you can choose from. I organised tests for my 9 and 10 year old and included antibodies and vitamins (B12, D3, folate & ferritin). Medichecks don’t deal with children under 18 but BH we’re happy to help. I wouldn’t have thought of doing this if it wasn’t for this excellent forum.
THank you diogenes. I am inspired by on eof out members who is saying that everything re out symptoms and history need to be documented and am inthe process of doing this myself I think this could be a great addition to add to my letter. Gps are very busy and relucant to read stuff but having it included on our notes is addedd pressure and evidence.
Since 2008, I've documented relevant health events/history... seem to ignore it BUT so pleased that I did this. Dr Skinner was delighted with a x1 sheet of A4 depicting birth - to then 2010. Much longer list now... always good to document.
Yes but also as well as our own documents, making sure our own voice is heard in our medical notes. i have just sent my previous endo a long letter with updates.
Thanks. Yes, I've got mine and - too ill right now [freezing cold all summer, yes even THIS summer, with heating only off for two weeks ]. Was surviving OK until Jan 2015.
NHS Endo - un-diagnosed me [2015] after GP had prescribed NHS funded Armour Thyroid following 2010 diagnosis. I only went back to endo [advertising himself as dealing with akin to 'outliers' like me], due to severely worsening symptoms. Oh, I reply sentence by sentence... it's all recorded.
I have all of this to wade through... lost enough life but little choice than to wade back through it all.
Can you Pm me with name of that endo.Just interested and would like to avoid. Could you not get youself some NDT, you could then document with more energy and faster thoughts.
Which region are you in? There's a need to be cautious about naming a B'd
I've been on T3 alone since Dec 2012 having been told in May 2010 [when taking Armour T] by Dr P [privately] that I'd only do well on that... he's a grand man and knows more about hypothyroidism than half of the NHS put together. He told me where to source it, but I still took Armour when I THOUGHT I needed it... it couldn't have done harm and the T1, T2, T3 and calcitonin may have helped, [albeit very small amounts]; the T4 in it was never required as Levo alone? Who can tell? This is a highly individualised problem for each of us and getting it right - which I have managed a few times - is not always simple.
I still have some Armour actually and was about to start taking some regularly again when, in Jan 2017, my GP stopped it after years of prescribing due to that 2015 endo. I could get hold of... but it's clearly something else behind the thyroid issue.
I am in Bristol. I can understand your concern.I am also on a right mix. Needing thyrogold for mybrain, t3 for muscle tone and naturthyroid to help me lose weight.Need a compound pharmacist really. also on NAX
Well then, the doc I'm talking about is in the N East, so you won't encounter him - lucky you!! Compounding pharmacists exist in the US, not sure about here - but it would be great if they did! Yeah, I take NAX also. Look after yourself. x
I may need to consult an endocrinologist in either Durham or Newcastle, I live in Co Durham. Would you mind sharing who you saw please, so I can avoid him!
Are you aware that it was the British Thyroid Association who decided that NDT be withdrawn and it was prescribed for years and years. One our our Advisers (deceased) wrote the following and he sent three yearly reminders for a response before his accidental death.
They never did so that's why we are in the state we are in:-
Withdrawn NDT - original lifesaver since 1892 and provides all of the hormones a healthy gland would produce. Then T3 without warning.
How much money has Big Pharma given to doctors and Associations worldwide so that levo became the biggest success plus, of course, the extra prescriptions we're given for remaining or new clinical symptoms.
Oh yes shaws, I certainly am well aware - I replied to this a few days back but it was too long - just to let you know that I get how dreadful this is. x
Thank you for this diogenes I'm sure this is going to be very helpful to a awful lot of people. You may have to keep reposting it! Tagging a few people in who I know will be interested in seeing this. linda96 Kitti1 Katepots lidoplace
Thanks so much diogenes. Very helpful. And the article you posted at the end was also superb: Front. Endocrinol., 22 December 2017 | doi.org/10.3389/fendo.2017....
This input is for those patients who have "passed the Rubicon" of needing treatment, which they are now getting even if it is currently not optimal. For those who are "at the banks of the Rubicon" waiting to see if their initial diagnosis is treatable hypothyroidism or not, and haven't yet started treatment, the situation is different and not really addressed here. When to start treatment and what will trigger it? This is another matter altogether, and needs another post which I'll try to put forward. It is much more difficult even than controlling therapy. There is a dilemma not just what a TSH value about 2.5 but still in the healthy range actually means, but when to begin treatment when TSH rises above 4.5 the top of the healthy range. Using an arbitrary cutoff of 10 is merely a statistical trick to minimise fruitless diagnosing and treatment of subclinical hypos but of course draws in true hypos in doing so.It comes down to patient presentation rather than pure biochemistry.
Treated hypothyroid since Feb 2010. Not diagnosed with TSH of 2.8 in 2008, neither at 3.8 in 2009, albeit with a sizeable and growing list of signs/symptoms which were ignored. Finally diagnosed by Dr S via bloods, medical history + physical exam in Feb 2010. Levo initially worked great, then within a short time I became 'toxic'. Treated for 2.5 yrs on Armour Thyroid [eventually funded from 2011/12 by NHS until 2017], then, as long advised by Dr P, using T3 alone from Dec 2012.
January 2015: dreadful symptoms [freezing temps, punch-drunk, fatigue beyond anything previously experienced, etc] led me back to endocrinology. NHS endo, advertising himself to work with patients outside of the usual parameters, who had been provided in advance with relevant, helpful info on my 'Health History', decided to 'un-diagnose' me, saying I had never been hypothyroid all along. Every other doctor from that point has believed his nonsense, and there are no M H issues involved - goodness help those where there are!
That single foul act has, ever since, impacted any other health issue requiring a consultation. I won't leave this alone, but time and illness[es] march on. I am living akin to the Middle Ages yet with no Renaissance in sight!
This document may not be read by many of our medics, or many will not be ready for it, but just to have access to it is already empowering. I intend to request having it added to my records, and memorize the points for my next confrontation. Boy, am I glad I have a record of regular private lab results showing the difference between t4 monotherapy and combination therapy. And lucky, as not all can afford even the baseline. I'm still excited. Thank you so much.
Any chance of adding something about about broken pituitary/hypothalamus for us central hypos? No doctor seems to get that at all (or even read the notes and remember that that's the problem)
Thank you-fantastic post inspiring me to keep going in my quest for better Hashimoto health.I am 69 in January.Diagnosed 1998 but have no idea how long I was underactive,as I was not diagnosed on symptoms but when hospitalised for a virus & probably during a flare.
I have had so many arrogant closed-minded reactions from GPs & endos,I don't think this would be read past the first 3 lines.There is such a problem with status & feeling this position of power being threatened.
However,this is truly empowering for me,as I know your professional knowledge & experience,coupled with your personal experience are priceless to us.
This is exceptionally helpful and I'm really grateful you shared it. Yet again, getting notifications of all your posts on this forum has been proved well worth it! Thanks for all your work in the field.
Thank you, Diogenes. This is an excellent summation of the issues most of us here face. As Angel said further up, perhaps a mention could be made of central hypo, and also resistance syndromes.
Even though your piece is admirably succinct, I suspect most GPs will refuse to read even this. Patients can insist that a copy in letter form is placed on thier records, then no excuse of ignorance can be claimed by the treating Dr in future.
Thank you for this diogenes , I hope many medics will take their heads out of the sand and stick their egos in there instead...then give your words the attention and respect they deserve
I've been giving regular written updates to my GP detailing my personal thyroid/T3 journey over the last year. Be assured readers doctors do sometimes take note of documents handed to them
My current GP admits her lack of (thyroid) knowledge and understands my decision to self-test and self-medicate, but has her hands tied behind her back by those in high places and can do little more than watch from the sidelines.
Only a few weeks ago I first caught sight of my original thyroid blood test results - which I requested about 20 years ago - and with the knowledge I've gained since then could see why I felt so ill. Poor conversion. That GP told me the "little white pill" (LT4) would make me well again. It did not!
To my current GPs surprise (and mine) I launched into an analysis as to why this was so. She is an excellent doctor and I have huge respect for her but I needed more than she could offer.
At age 72 I had reached the stage where I could barely function and with only diagnoses of Fibromyalgia and Chronic Fatigue (my symptoms first appeared about 50 years ago) I knew the choice was to end up sitting in a corner or to start researching in earnest - despite the brain fog!
Clearly I'm not going to bore you with 50 years of my life story but suffice to say that I found the life- changing TUK, read a lot and learned a great deal and now understand why I became so ill.
I first titrated T3/T4 with little success, had the genetic test and found I had inherited the DIO2 polymorphism from both parents (according to Panicker et al, a double whammy!) T4 had to go!
I have titrated T3-only for the last 3 months and am slowly beginning to function again - brain is sharper, BP and BHR have dropped, basal temperature is rising and cholesterol level is now normal.
Ok so far....except that my source of T3 currently has no stock left....who knows if that will change, and since I hold little hope of the NHS coming to the rescue I may be heading back to square one.
I'm in Scotland and have just sent a detailed letter to the relevant Cabinet Secretary though I hold little hope that that will do more than gather dust.
This is a crisis waiting to erupt but sadly no matter how vital it is to those of us involved it is not the only crisis screaming for attention right now.
Your hugely helpful document will hopefully see patients achieve a proper diagnosis, particularly helpful if a prescription of Levothyroxine is what they need to restore well being.
My concern is that despite the obvious necessity some patients have for T3 this will not be prescribed, no matter how many fine words are shouted from rooftops, until much changes - the price drops and medics understand its importance and use.
Patients are up against the power of politics and finance, not just medics lack of knowledge - how that barrier is broken down remains an issue of monumental proportions.
I wish it were different.
I'm now 73 and very concerned about not only my future and that of others like me, but also very much so for younger people who may like many of us be left to live with this (badly treated) condition for decades.
I have learned so much from your writings and contributions.... we all owe you an enormous debt of gratitude.
What you have put here is what I have been saying for a long time I am like you getting on in years and I am getting worse I am not getting any where with them to get me better it looks like they are not allowed to do it because of the cost of T3+.I have been told not to come with my symptoms.
Morning Fedup5 . So sorry you are getting nowhere with docs - you should not have been told not to come back. In general, their knowledge of thyroid function is very poor
That doctor clearly had no idea and feared losing face! Can you see another doctor, request an appointment with an endocrinologist or do as I did...have a private test post the results here and you will be given reliable advice.
Thank you for the notes, although I doubt very much if any UK GP would have the gumption to read, let alone inwardly digest the notes written in plain English for them. My GP failed me for 10-12 years and continues to stuff T4 only prescriptions in my face...there is NO going forward with them despite everyone's best efforts
I don't for a moment think many GPs will respond or even understand, let alone endocrinologists. The idea is the simple one: from little acorns, mighty oak trees grow. Spreading the message is always worthwhile no matter how much stony ground there is. I don't believe every patch is sterile, and if things take root somewhere there's always the likelihood of it spreading.
I'm new here - so apologies if what I suggest isn't correct - and I hear what you say about spreading seeds etc - but as well as patients individually taking this excellent document to their GP/Endo what about sending an appropriately tailored version to Royal colleges/ DOH [Sec of State] / NHS trusts / Opposition health spokesman - on the grounds that if thyroid patients get properly tailored treatment the NHS as a whole saves time and money [less consultations, less financial waste in poor spending of resources etc]. The NHS treats each thyroid symptom as a separate entity and will investigate it expensively - finally concluding they can't do anything about it in a best case scenario or in a worst case scenario requiring unwitting patients to submit to surgery or drugs with side effects etc etc. If the "top" was to issue an edict to those down the chain, that thyroid patients were to be treated as Diogenes says in his document, every one would win. the hierarchical system that the medics operate in means that if they are told from on high to do something they have to comply - if they are faced with a patient asking them to do it, then they can say they exercised their best clinical judgement as a reason for not needing to act. There is a massive difference between the 2.
This document is augmented by a recent paper we've published. This has been forwarded to many of the bodies you describe. It is more acceptable as it is in the form of a peer-reviewed formal paper as below (downloadable):
Time for a reassessment of the treatment of hypothyroidism
April 2019 BMC Endocrine Disorders 19(1)
DOI: 10.1186/s12902-019-0365-4
Project: Biomedical Cybernetics
John Edward M Midgley, Anthony D Toft, Rolf Larisch, Johannes W Dietrich, Rudolf Hoermann.
People will listen more to formal papers like this rather than some individual's opinion.
No I haven't. The reason is that all GP's are in thrall to higher authority, which tells them what to do and how to think. No individual can come in and undermine that attitude.
Good grief!! Maybe it would be a good idea then. As GPs are key in managing most people with hypothyroidism and there are inadequacies in this.. isn’t collaborating with them key to improvement??
The NHS doesn't work that way. It is essentially a top down organisation. This leads to uniform thinking. In the US though, the individual doctor can be open to individual approaches and prescribe accordingly. That's hardly possible here.
The number of hypothyroid patients seen by endocrinologists will be few and far between, with the vast majority being seen and treated by GPs. When you say ‘top down’ I presume you mean endocrinologists providing guidelines for GPs?? I don’t think GPs are quite as thick as you imply, but the chances are they haven’t read your papers unless perhaps they are hypothyroid themselves and venture into a patient forum, are presented with the above from a patient, or are looking to explore a specific clinical question in their own reading.There is no reason why you, a colleague or even a charity couldn’t engage with a GP, to conduct a survey of a population to identify issues with hypothyroidism management. This may be a first step in leading to improvement. As there is research already looking at this, is there no reason this couldn’t be used to suggest change? I think you first have to raise awareness there is a problem with the group you have a problem with. It may seem obvious on here, with the nature of the people it attracts, but perhaps less so to an GP who will see mostly people who are ‘ok’ with their treatment and those not may appear to be a minority.
‘treatment adequacy must be judged on an individual basis by a combination of clinical and biochemical outcomes.’ A statement taken from your paper. Contentions around blood testing aside, there is no reason why there can’t be at least some improvement of this in current practice.
‘The frequent overlapping and unspecific nature of hypothyroid symptoms presents yet another challenge’. This is of course a major challenge, as people are not textbook cases displaying typical textbook clinical features. They often present in non-specific ways, have increasingly long lists of comorbid conditions and polypharmacy adding to the complexity of the situation. Isn’t it best to collaborate? Isn’t it best to have a united view between patients and doctors of the challenges faced and of the gaps in research at this present time?
I do not mean that. The NHS issues guidelines. They apply directly to GPs. GPs are not specialists. They rely on what the NHS guidelines say. They simply haven't the time to cover all diseases entirely from their own knowledge. There are too many. Guidelines should be exactly that, but they are not interpreted in that way. They are interpreted as obligatory as regards diagnosis and treatment. Add to that costs of treatment, and the cheapest will always win.
Presumably you mean NICE, which I suppose is overseen by government. Although there aren’t specific guidelines for hypothyroidism except CKS. I get where you are coming from and it can appear restrictive, but I don’t see why patient advocate charity’s can’t engage directly with GPs if they feel treatment is inadequate. It seems bizarre to me that if so many people have issues with their GPs as understood by this forum then GPs are kept out of the loop and even labelled as ignorant as a whole by admin staff and people considered to be an authority. If this is truely the case.... evidence it and do something about it.
I'll just append the end of the conclusions from our latest paper:
Treatment choices no longer rest primarily on the personal interaction between patient and doctor but have become a mass commodity, based on the increasing use of guidelines not as advisory but obligatory for result interpretation and subsequent treatment. Contrary to all proclaimed efforts towards a more personalised medicine, this has become a regulated consumer mass market as with many other situations. This is of little benefit to patients who will continue to complain, and with some justification, that the medical profession is not listening, thereby abandoning one of its primary functions in the doctor-patient relationship.
This applies to all parts of the medical profession. Any change will have to come from on high, not piecemeal at the coal face.
I disagree. The ‘coal face’ is important in instigating change. I don’t think currently NICE CKS go into the ins and outs of blood testing, but diagnosis is defined in medical textbooks and treatment. Labs can be directive about blood testing and this can be restricting and economics comes into these decisions. But, if you provide evidence to the coal face that patients as a group are dissatisfied with their care, published somewhere accessible to GPs then maybe they will consider this in their own cohort of patients and this may result in a change of behaviour on an individual level. If this is happening across many individuals then this may catch on to trainees, medical students etc... publishing papers in journals is very important of course and may be read by a handful of specialists working in that area, but ideas take a long time to reach the coalface and require clinical evidence to result in change. Presenting the idea to doctors that a large group of patients are unhappy with their care to the group of people responsible for this care is the most important thing you could to to achieve improvement. A doctor may read the above and feel quite patronised by the wording and this might set them off on a wrong footing with the patient. Is this fair to anyone? To spread the idea on a forum that all doctors are ignorant and give conflicting advice in an area that is already quite complex creates confusion and anxiety in people and this is not fair to anyone.
Even GPs who try to understand, who try to get the appropriate tests done, who try to refer, who try to prescribe what is needed, often get refusals all the way.
We see lab tests either simply not done or refused.
We see referrals knocked back (sometimes by non-medically qualified staff).
Why, we have even seen GPs who have been asked, even instructed, by consultants to prescribe (especially Liothyronine/T3) being effectively unable to do so.
Given that GPs have patients with a huge range of disorders, we cannot expect them to batter through these walls for thyroid issues - as well as everything else.
Believe me I get all of this and I completely understand the frustrations of many people. I am not meaning to be argumentative only helpful to the cause.
I am sure people on here could put together a list of areas in which their thyroid treatment could be improved. I know a lot of people on here will have ended up under endocrinologists but it might be that only one patient in a practice of 8000 is referred to an endocrinologist for hypothyroidism management in a year... a lot of the concerns seems to be about GPs so why not tell them as a group?
Simply because it doesn't come from the "right direction". I'm not medically qualified formally so can be ignored immediately. My colleagues are almost always "foreign" so they can be dismissed. Medicine is very parochial and insular. The UK thyroidologists believe x, so x is always right. Europeans may believe y, and the USA z. Diagnostic and therapeutic advice differs, as does freedom to choose. The parochiality, jealousy and refusal to engage is present in many papers and with many individuals - eg a certain eminent physician in the US makes it his business NOT to refer to any of our work, even if relevant. With attitudes like this, I cannot see coming in at lower levels in our strictly regulated climate will have any effect whatsoever.
Areas of clinical equipoise aside, I am sure there are many areas of hypothyroidism management that could be improved even within current guidelines and practice. I appreciate there are differences of opinion between research groups in areas of uncertainty, some of which you have referred to. It seems more ethical to be honest with people about the uncertainty that exists in certain areas and gaps in research to provide definitive answers to clinical questions. Change comes from all angles. GPs are the main source of care for the vast majority of people with hypothyroidism. They do have a voice and many will happily ignore guidelines they don’t see as fit for purpose or appropriate. I appreciate you see them as ‘below’ specialists and researchers, but many consider themselves experts in their own field with skills in managing complexity and comorbidity that are not easily treated by guidelines. Many also are active in clinical research, teaching and training. If GPs don’t see a problem with the way they are doing things then nothing will change. If there is evidence then maybe it will.
This may be very well for those GPs who do have the knowledge. But they are influenced by the power of the path labs who choose which tests they will perform and which not. Very rarely indeed does FT3 get measured, when in therapy it should be the routine. FT4 does get measured but by no means always. TSH alone is deemed sufficient, when it is not. It is a scandal that the path lab, ignorant of the patient, can unilaterally and without challenge decide on the tests performed and the advice to the GP. They can and do refuse requested tests, based on their interpetation of guidelines. The GP is hamstrung on this. Also if a GP by themselves decided for example to prescribe T3 only for a patient, without consulting an endocrinologist and turning the decision over to them, they would be struck off. Another perceived problem is that control of therapy is deemed easy, based only on a TSH value. It is therefore open to categorisation whereas the individuality of the patient is paramount. This is what we stated in our paper.
If GPs, clinical biochemists, endocrinologists and a large proportion of patients appear on the surface, happy with this approach, then who is going to change it?
But point out to all these groups of people (not only the groups of endocrinologists active in research and politicians) that people take to a forum of >90 000 followers to seek advice and resort to self treating. Point out that many have come to the conclusion, often through their own research, that they may not be converting properly and there is increasing research looking at genetic polymorphisms that may in future explain why this is. This surely must raise some curiosity to understand why this is happening. Does it mean that there are hidden patients, who could benefit from different treatment, who aren’t being identified by their GPs? Ask this question and it may generate some interest and discussion.
Exchange of ideas within an echo chamber is fine (and I mean both on here and doctors circles) but if ideas aren’t exchanged between different groups of people with different perspectives, then no one will feel the need to consider each other’s point of view and nothing will change.
I don’t think a GP would necessarily be struck off for prescribing T3 if they felt competent to do so and were doing so in line with T3 prescribing specialist guidelines, but I doubt many would prescribe due to small numbers of patients per individual GP who would ask to be prescribed T3, so they probably don’t gain the expertise in the same way an endocrinologist would. Also, as you say they have expectations on prescribing imposed by CCGs at the current time. I don’t think this is a reason not to engage with GPs. GPs, along with specialists and pharmacists make these CCG decisions on prescribing, presumably by looking at results of meta-analysis that many experts agree may not show the full story.
The basic problem is mental inertia. From on high, and at medical school, GPs have been given for 35 years a simple message. Diagnosing and treating hypothyroidism is easy. All one has to do is measure TSH (FT4 occasionally also) - if its in the healthy reference range then no action. To minimise treating subclinical hypos who don't need treatment, put the decision point for TSH at 10. When you treat, use T4 only, as it will always be efficiently converted to the T3 the body needs. Control treatment by keeping TSH in the reference range. Everybody happy (I don't think). Now we find the whole business is really intensely complicated - as complicated if not more so than diabetes. The message is not the categorised message as above. The patient's journey to hypothyroidism and their history of treatment is complex and individual to them. There is no simple story. That is almost impossible for the medical profession to swallow. It requires root and branch rethinking and GPs cannot lead in this in the UK and only very rarely are receptive but have hands tied. Our latest paper got absolutely savaged by the BMJ reviewers and had to be submitted to a more receptive audience. It might take a generation before appropriate teaching is given to would-be medics in medical school. They only get about 4 hours of endocrinology according to what one young fresh out of school doctor told me. Practical medicine is not receptive to the complicated, but to the easy solution. And that applies to both high and low in the profession.
I wasn’t saying that keeping TSH in the reference range was keeping everyone happy... just that it should form part of normal practice to titrate medication according to symptoms and this is standard teaching. I don’t see any reason why this shouldn’t be improved by engaging with GPs if this is not happening as it should be (as well as clinical practitioners and pharmacists who are increasingly taking on these roles with GPs being in short supply). Your paper published with Dr Toft would be useful in this respect. Just out of interest what are his views now on using T3 testing in diagnosis? When I have previously seen him speak he appeared to say it’s not useful in diagnosis from my recollection.
Toft is now of our view in the paper, otherwise he wouldn't have joined as an author. Medical teaching nowadays has no meaningful biochemistry in it. Accordingly, there's no linkage between the biochemistry of hormones and effects in chemical detail. Medics know little or nothing about the energy cycle, food supply to that cycle and all the biochemistry coming from it. They get told what hormones do, as a simple minimal message from on high, and with no knowledge of the science behind this, merely parroting out what they've been taught. There is no chance that detailed scientific justification for a new approach will have the slightest effect, because they have not got the background to judge it.
The paper does not mention T3 specifically does it, which was why I was wondering about dr Toft. Medics are taught biochemistry, usually in year 1 by biochemistry lecturers. Maybe you should take aim at them in that case. It becomes more clinical towards year 5. They are not likely to be responsible for making decisions about thyroid treatment until specialist training perhaps 7+ years later. 4 years of endocrinology teaching seems dubious to me. Its covered in various settings both formal teaching, self-directed study and ward/clinic/GP based spread over 5 years. No doctors are not biochemists. Of course they do not have the same degree of knowledge as a biochemist (unless they are a clinical biochemist), in the same way as a biochemist will not have the same knowledge as a doctor in clinical reasoning and diagnosis, an art (not a science) based on a balance of probabilities, uncertainty and imperfect diagnostic tools in many cases.
There is a freshly published article in the BMJ (BMJ 2019; 365:l2044) written by a GP on diagnostic labels. It discusses how diseases are defined by panels of disease focused specialists in panels and diagnostic criteria are set out by them, for generalists to apply. The author outlines concerns about risks of ‘overdiagnosis’ and calls for a shift in the entry criteria for a diseased state. He states ‘medical specialists, who have a deep understanding of pathogenesis, presentation and natural history for individual diseases, should have less influence over how they are defined. Medical generalists, who have a deep understanding about how diagnoses affect patients, families and the health system should have greater influence. Patients and the public should be central to the process. Rigid definitions should be replaced with ‘thresholds for discussion’ between doctors and patients’. Whilst he is talking about overdiagnosis, not specifically thyroid, but prediabetes, CKD etc, and this should be seen in the context of the article, the idea of ‘thresholds for discussion’ rather than rigid criteria and rigid guidelines makes sense to me. I think this makes sense in the area of hypothyroidism and GPs are well-placed to understand this. For every patient who ‘can’t get a diagnosis’, there may be several who are perplexed by being given a diagnosis and don’t want to take tablets. People are all individuals and have different thoughts, influences and understanding of their condition.
Phoebebe, This is a patient to patient forum, so if you have a thyroid disorder you are welcome and won't be lynched! However, you do not seem to be here in the capacity of a patient needing support from fellow patients. We do ask that healthcare professionals declare their status/qualification etc on their profile, so that members have a little understanding of who it is they are conversing with.
If you could add a little information to your profile by clicking this link, it would be appreciated healthunlocked.com/user/pho...
I have not personally witnessed any ‘medical generalist’ who have a deep understanding about how diagnoses affects patients, families and the health system. They all seem pretty overworked, apathetic and generally slaves to their profession. Tied up in knots.
I meant that people on here are generally frustrated about their care. It is sad and I hope something can be done to improve things. I can’t say I have had bad care, some could have been improved.
Sorry that Phoebebe decided to leave, and so soon after joining. I was going to respond to her post, I thought she made some very interesting and positive points.
Have you tried submitting an article to the British Journal of General Practice?
- The BJGP…bringing research to clinical practise… “is an international primary care journal publishing research, debate and analysis, and clinical guidance for family practitioners and researchers worldwide.” bjgp.org/sites/default/file...
He quotes “The Ten Commandments for Patient-Centred Treatment” written by a group of GPs. I wanted to know who the group of GPs were and found the authors on the BJGP website bjgp.org/content/65/639/532
Here are a few:
1. Thou shalt have no aim except to help patients, according to the goals they wish to achieve
…Do not assume that you know what your patient has come for, and do not assume that the treatments you have on offer meet the goals of everyone in the same way.
5. Thou shalt treat according to level of risk and not to level of risk factor…
6. Thou shalt not bow down to treatment targets designed by committees, for these are but graven images
…This traditional model has become embedded in many guidelines and in the (UK’s) Quality and Outcomes Framework. Clinicians are paid for the achievement of a surrogate outcome…This can act as a disincentive to the essential process of dialogue and shared decision making, which always needs to take precedence over the achievement of externally imposed targets.
9. Thou shalt diligently try to find the best treatment for the individual, because different treatments work for different people
…it may require one or more trials of treatment to find the most effective drug…it may be worth trying drugs with a relatively small statistical likelihood of benefit, if this offers the possibility of success when more likely agents have failed.
------------
Unlike others, I think there are GPs out there that do endeavour and want the best for their patients, just need to find a way of reaching them, engage with them and join ranks.
The Commandments evolved from the chapter ‘The New Therapeutics. Ten Commandments’ by John S Yudkin in The Good GP Training Guide. Matt Burkes and Alec Logan, eds. London: Royal College of General Practitioners, 2014.) amazon.co.uk/Good-GP-Traini...
You can “look inside” the book and read extracts. The biogs of the authors are quite funny too.
I did a double-take when I saw the name John S Yudkin. Who turns out to be Professor John S Yudkin, the nephew of Professor John Yudkin who wrote the brilliant and prophetic “Pure, White and Deadly” (1972) about the dangers of sugar. He was attacked by the sugar and food industry and ignored by most of the medical profession. The book led to the end of his career…......his reputation restored some 40 years later.
The admin staff on here are quick to point out how ignorant in all things thyroid that GPs are, why not address this if it is true. Hypothyroidism isn’t that uncommon and forms part of everyday work for a GP, even if it just looking at a blood result. Engaging with GPs, surveying staff and patients, providing evidenced based leaflets for use by staff and patients are all things that other charities do to improve care.
The admins here are not staff. We are volunteers. We simply do not have the resources to do more than we do.
Thyroid UK is a tiny charity.
Even some pretty substantial "disease" charities have difficulty in getting anywhere.
Yes, the huge ones do manage to have an impact, but only (it seems) when they are large enough to fund research and have qualified medics on their staff.
Possibly the best current focus is on influencing the NICE guidelines in development?
Ok, I understand. If all the followers on here donated £1 to the cause a lot could be achieved!! I am not sure new NICE will be that different to current CKS, but who knows!
Yes, yes, yes, to your idea of every member here donating just 1GBP. That would help the charity enormously.
Unfortunately though, no matter where the info comes from, by far the majority of GPs and Endos are unbelievably resistant to changing what they have been doing all through their medical careers.
So we (volunteer) admins and other forum members plod on, doing what we can to help our fellow thyroid patients by offering up our knowledge and experiences gained over many years.
Yes they very much are appreciated 🤗 but they don’t hold any sway. I can’t go to my GP and say soandso is an admin on ThyriodUk and they said ..... Although my NHS Endo did use ThyriodUk as a reference point for my DIO2 test.
I too am frustrated that it seems that I can’t makes changes. I am very vocal with my GPs. So much so that they’ve done many FT3 tests over the years but they don’t understand the importance so it’s useless info at that level. But it has allowed a more knowledgable Endo to be able to see at a glance that I am not a great converter. But how do I help change the system? 🤷♀️ I need template letters to send to my surgery and Endo and MP and CCG and and? I need template letters because it needs to be concise and stand up to scrutiny and only a small amount of emotion because god forbid anyone who gets emotionally about their own health! That would mean I need a course of anti anxiety meds or anti depressants or something else to calm me down! 🤬
I’m amazing now. 10yrs on Levo and never stable, never fully well but enough to function most days and do very well on others until last year when it all decided to go sideways. NHS Endo completely useless. Private Endo saw straight away that I don’t convert well no matter how much T4 I take. I’m on a t4/t3 combo now and for once in my life I can say I’m truly happy 🤗
unfortunately they are spreadout in replies to various posts. You could try searching my posts. Usually my templates are as replies to posts about CCG not giving me T3 or doctor wants to reduce my dose.
im very busy at work now so I haven't had the time or energy to get to work on the blog spot but it will happen.
The admin staff on here are quick to point out how ignorant in all things thyroid that GPs are, why not address this if it is true. Hypothyroidism isn’t that uncommon and forms part of everyday work for a GP, even if it just looking at a blood result. Engaging with GPs, surveying staff and patients, providing evidenced based leaflets for use by staff and patients are all things that other charities do to improve care.
As helvella says, Thyroid UK is a very small charity with only a handful of staff thyroiduk.org
The CEO is Lyn Mynott and her PA is Louise Roberts. They are members of this forum LouiseRoberts and lynmynott but rarely have the time to look at comments here.
Just like any other charity or business, the amount that can be done relies for the most part on available funding. Thyroid UK has to run on a shoestring, as you will see from their finacial statements available in their annual reports thyroiduk.org/tuk/About_Us/...
I disagree. As I have detailed in many posts on this site, the GMC and the Supreme Court give individuals the right to challenge doctors views. The Supreme Court set out in the landmark case Montgomery v Lanarkshire 2015 that "It would ... 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.
The Court was clear that this was about the LAW but this is the law of medical negligence. This is a judgement from the Supreme Court and as such is binding case law.in this case the GMC intervened to make the court aware of its code of practice "Consent: patients and doctors making decisions together". This case law now applies to medical practice.
Thank you so much for taking the time to write this. I need to read it carefully, then decide what from it to use when I next write to my GP. My own submission to her will be complex, but there is definitely a LOT of what you have written (far batter than I could have) that will be pertinent and invaluable.
Thanks again.
Brilliant, but I too found it rather long. Though that could be the usual hypo concentration problems.
Is it possible to make it shorter and simpler without losing any essentials?
I was always hopeless at precis in school English lessons, but a friend told me she was even worse - she would end up with MORE words instead of fewer!!!
But surely someone can help? Many Doctors seem to need something that a bright 10 year old can understand before they are willing to read it!
The idea for patients is not necessarily to use this verbatim but to use the bits they find helpful and put them in their own words, with their particular experience. Patient-doctor relations are personal and delivery has to respect what you think about your doctor.
Thank you for taking the time to write all this I fear doctors will just as always ask me where I read this and they are the trained medical individuals not me , I’m not sure my T3 was ever tested but I’ll hold court on that until I return to doc for repeat bloods next week and ask for all my previous tests , I have told Endo and GPnanout the fatigue, brain fog and constipation and not once was I told these are all side effects of hashis , It was actually mentioned that I see a gastroenterologist regarding the bloating and that the tiredness was from stress and menopause!
OK , you can tell 'em that the author is the inventor of the FT4 and FT3 tests doctors do (or do not) use, and his wife ran the first TSH test for hospital use in the UK and also developed a TSH test of present day sensitivity several years later in another lab. He is also the author and coauthor of 70 or so papers regarding thyroid testing and function, and is presently still active in the field with a consortium of collaborators, developing a completely new way of looking at thyroid function and testing strategies and the meaning and validity of clinical trials. Now if that isn't good enough, let me k now.
Thank you Diogenes I’m fairly new to this group and I don’t know who’s who so thank you for explaining your in-depth knowledge and your speedy response
I joined this group as I felt private endo was fobbing me off re bloating & constipation to a gastroenterologist when in fact she should have armed me with these side effects that everyone else in this group seem well aware of but not the medical profession
After my last bloods in May GP ..said all was normal but to take folic acid yet endo kindly replied 5 mths later stating my TPO antibodies were high and I had an auto immune disease and upped my eltroxin to 125mg twice a week and 100mg 5 times a week , I just want to add these were the same blood tests, the reason I did not contact endo for results was because she had referred me back to GP to have them done , so when GP called me I presumed all was in normal range ...how come 2 doctors can differ over same bloods Is crazy and that was the reason I opted to pay privately to see endo to get more answers it’s like going around in circles !
They let us do that and keep us going around in circles. I have had a GP send me for a blood test and not take any notice of what the labs. had put in it for themselves to read and I have not been able to get any where it was not okay but I was told it was normal.Thats when I got my 1sts printout was told it’s normal as they were giving me it then I found out it was not. This was 4 years ago and another pretcis. So I am not with them GPS now but I am still going around in circles my thyroid level is not okay and I am not getting any better has time is pasting, these GPS don’t want to know what I am saying about my thyroid symptoms I am told don’t go there and don’t come with your symptoms they are not being helpful they don’t know what to do they have got their hands tied from above I think I am getting on in years. I just want to be able to get around in my house now I am having trouble breathing and I am in bed is this all okay for GPS and them above.
Even if as many posters say doctors won't read it or may dismiss it there is a lot to be said for insisting documentation you provide be inserted in your chart. It's presence may not help with a particular caregiver but who knows? Somewhere down the road our written words may help us in ways we can't see right now.
In my experience appropriate documents sometimes turn up at unexpected times to help us.
You've written an excellent piece, but I feel this will only get your average male doctors' back up even if he actually reads it and doesn't consign it to his waste basket. I've always found people with God complexes take an exception to being told their job. It's a shame that we have to tell them their job, but they have the power and prescription pad.
And that I have to agree with sadly . I was asked by an endo recently why my doctor left me for a year with a high tsh 3.50 when a previous endo had confirmed I was fine on my previous dose and a tsh of 0.86.her words were that she wanted to see how I would be on the dose she recommend . The silence was deafening 😢
That's appalling, and judging by this forum by no means unique. If only more men were affected by thyroidism maybe the medical profession would take more notice, although the amount of guys dying of prostrate cancer, it's unlikely. Even some private endos can be underhand. When it was obvious to me thyroxine would never work for me I booked an appt, with a private endo who assured me he would provide a prescription for lio. Then he refused to, so I didn't pay him haha.
😂😂😂😂. I did put a complaint in to the surgery but as she is still there I just make sure I see another doctor now. I have suffered because of her ignorance as my ted reoccurred and I have been on steroids and immune suppressants ever since to try to control it. 😢
I think it's very well written and shows a level of medical self awareness that a responsible doctor would appreciate. I believe my doctor and I are partners in my health management. But if I gave that to a doctor in France, the response would be: surprise and somewhat suspicious (am I neurotic, obsessed with my health...) | I'd be asked if I am a doctor (sarcastic) | doctor would not read it. If a doctor doesn't want to listen to me, as I listen to them, I find another doctor.
Great idea now if only my endo will read it or allow me to read it to him; without holding a gun to his head.
Thank you so much diogenes. I just saw the post and realize it could be also used with other specialists with some word substitutions. You must have put a lot of work in the letter.
What jumped out at me is that if I wrote a similar letter I would probably offend the doctor in some way trying to get my points across. Your writing is gracious and even the most recalcitrant doctor could not feel threatened by a knowledgable patient.
Awesome! I was on Synthroid alone, and fought with doctor to switch. I am mow in the process of finding the right amount/ratio. Thank you!
This is such a detailed compendium of reasoning to have t3 on your prescription. Have just read a response by SlowDragon Administrator from Galathea, who needs a prescription from an endocrinologist for compounded t3 in olive oil. She suggests she contacts
Dionne@thyroid.uk tukadminthyroid.uk. to find an endocrinologist who can provide her with a prescription she needs. Do you think people who are having this difficulty in obtaining in getting t3 as they need it, should find someone recommended by thyroid.unlocked to find the right prescription?
Awfully long but relevant. I think I would make it a priority that it was read before a private appointment so saving on the face-face fee if he/she was unwilling to consider giving the therapy you felt was vitally needed.
Amazing! Thanks for this!!
Brilliant but going to be hard for a gp to read in a 10 min appt .I have been told to leave any corespondance with the surgerys reception team to deal with .
GPS got pills to push .
Can address your own immunity and blood health and makes the world of difference .
If I can do it im sure with a touch of will power you will learn not to turn to a profit making organisation and become trapped as we all have ...
Rant rant rant lol ..
See my posts .
Trying to point out a situation as fast as I can .
If you repeat somethingverbatim, you say it using exactly the same words in the same order as the original statement. Repeating something verbatim should preserve the entire meaning of the original statement.
Oh there's a new word I've never heard of but will take it on board .
Think I'm a bit like that with my blunt explinations. Just like to be Clear .
Will use as a stepping stone when approaching endo in may .
If the best way to calculate is by weight then I don’t follow. I was on 250when I was 9st for around 15 yrs. Always had good conversation to t3 and felt fine. Now 11 st and 125 with same blood results 🤷♀️
Bear in mind that the calculation based on weight is a minimum requirement. If you have absorption issues, you could need double, or more, the dosage. (And there could be other reasons to need a higher dose than calculated on weight alone.)
I used several published formulas to produce a spreadsheet for this:
The very fact that I easily found several formulas should be taken as a warning that they are all highly speculative. And unproved. Hence the warnings embedded in the spreadsheet.
Strangely was talking about this today at endo appointment. He offered no explanation other than thyroid disease is individual 🤷♀️
Are there references for this? Many thanks.
To change practice in the world of science and medicine, isn’t a well-designed clinical trial required asking a particular question?. Has this been done/published or designed and in process? I think you are advocating good symptom control (as it should be!) and maintaining T3 within range rather than the more conventional TSH. So specifically comparing outcomes with both approaches? Suppressed TSH may or may not be a problem you say... so if someone is symptom free would you do anything about it? Or accept if T3 is in range.
Regarding adequate clinical trials - I can't think of one, as all so far published are confounded by inadequate statistical application and random choice of subjects. Regarding suppressed TSH - not advisable if you have working thyroid left, but in some cases unavoidable if you have none. The control between T4, T3 and TSH is fundamentally different in the two cases as is the implication of suppressed TSH..
How would you manage the patient’s dosing of Levothyroxine, if you were a doctor and the patient had no change in symptoms on various different doses?
I would hope that people with symptoms do have dosing fine-tuned, but obviously this doesn’t always happen. I suppose the patient may have to be the driver of this as a doctor may just accept a blood result and file it if in suggested range in the time-pressured nhs. The main areas of contention, as far as I can tell are around diagnosis when tsh in range, T3 prescribing and dosing and doctors wanting to reduce dose when TSH is suppressed (or sometimes low) against the patient’s will.
First, I'd see if there was any T4 dose that would relieve symptoms, checking FT3 only and ignoring TSH. If there was no such dose, and the FT4/FT3 ratio started rising strongly, with FT3 staying about the same and lowish in range, I would consider T3 addition. This applies if no thyroid is left at all. With some working thyroid I'd expect to find a T4 dose that would work without totally suppressing TSH.
Unfortunately the NHS have a tickbox system,particularly with GP's(who have budgets controlled by CCG's!),and if they can just chuck Levothyroxine at it,they will! In today's climate even with my TPO what it was,i wouldn't even get Levothyroxine!
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However, you do not seem to be here in the capacity of a patient needing support from fellow patients. We do ask that healthcare professionals declare their status/qualification etc on their profile, so that members have a little understanding of who it is they are conversing with.
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