A quite interesting paper which discusses the impact of forums like right here, sites such as Stop the Thyroid Madness, patient-authored books, etc., on thyroid treatment. In my opinion, well worth a look.
It might be good to see that the professionals are taking at least some note of the patients. What impact that will have on treatment in the longer term, I really don't know.
Just because it is about Denmark doesn't mean it is not relevant to those of us who are not in Denmark.
Eur Thyroid J. 2015 Sep; 4(3): 174–180.
Published online 2015 Aug 14. doi: 10.1159/000437262
PMCID: PMC4637515
Treating Hypothyroidism with Thyroxine/Triiodothyronine Combination Therapy in Denmark: Following Guidelines or Following Trends?
Luba Freja Michaelsson,a,* Bjarke Borregaard Medici,a Jeppe Lerche la Cour,a,b Christian Selmer,a Michael Røder,c,d Hans Perrild,e Nils Knudsen,e Jens Faber,a,f and Birte Nygaarda
Abstract
Background
Five to ten percent of patients with hypothyroidism describe persistent symptoms despite being biochemically well regulated on levothyroxine (L-T4). Thyroxine (T4)/triiodothyronine (T3) combination therapy [L-T4/liothyronine (L-T3) or desiccated thyroid] are still regarded as experimental with no evidence of superior effect on persistent symptoms according to meta-analyses. However, some randomized controlled trials have demonstrated patients' preference for T4/T3 combination therapy as compared to L-T4 monotherapy. In 2013, attention to combination therapy increased in Denmark after a patient published a book describing her experiences with hypothyroidism and treatment.
5-10% complain??? Are they more put up and shut up in Denmark than we are here then ? I very much doubt it. I thought the usually quoted figure was around 20% left symptomatic...or did they only consult the primary care doctors, who took off their blindfolds, ball gags and headphones when asked and said 'What ?'. In Danish, obvs
Many people who've been diagnosed years ago may not have access to a computer and put up and shut up when doctors ignore their symptoms and tell them it's nothing to do with the thryoid gland as your TSH is 'perfect' and you're on sufficient hormones (as blood tests says so!).
They will not admit how many patients return to the surgery very often with complaints. They should also state what 'other' medications are being prescribed to hypothyroid patients to treat 'symiptoms' which should be eradicated with proper thyroid hormones that suit them. They should also report if the patients begin to have heart or other problems that have developed after being diagnosed.
HU Thyroiduk.org.uk are only one self-help and support group and we have around 50,000 members. Quite small in comparison to the total diagnosed in the UK. When you take in the whole world, we see the dissatisfaction amongst many countries but the medical profession do not and wont listen. There's STTM, Hypothyroidmom, and a myriad of others. There''s also been the hounding of doctors who've lost licences or died due to being reprimanded for treating patients as human beings and not machines and the insistance that levo alone is the 'choice' of the medical profession when they don't even give unwell patients a 'choice' particularly if they feel much worse on levo than they did before diagnosis.
We want a freely available choice if levothyroxine isn't beneficial. Also, as we all know, some replacements, for one reason or another might not be beneficial, so we have to be allowed try several alternatives.
I've just read the article, and there isn't much more in the whole thing than the abstract.
I noticed something that I always notice and harp on about! Although the abstract and inside the paper they say there is no evidence that combination therapy reduces symptoms, they go on to cite several papers that show patients are much happier, but also that patients report improvements in a large number of quality of life and symptom measures.
It dumbfounds me that patients reporting a reduction in a scale measuring symptoms is not translated to mean that symptoms were reduced. It's dismissed as 'well, that was just a reduced measure on a scale'. To which I would argue: that scale was introduced by you, to measure how the patient's symptoms are doing. But then once the scale is completed, people don't take it as a measure of symptoms.
I went to the conference last week for Butterfly charity dealing with thyroid cancer. If it had been any good I'd have started a thread about it. And there was a similar dancing around lingering symptoms there. A speaker told us that the quality of life for thyroid cancer patients is very low. Similar to that for bowel cancer, and far far worse than e. g.breast cancer. Then he just shrugged his shoulders in puzzlement as to why that is or what form it takes.
Meanwhile almost every patient that spoke would make a quick reference to how they take a nap in the middle of the day or gave up their job, etc. Everyone knows that these patients are still ill, but they pretend not to know. It's extraordinary!
I have leant a lot on this site, no where near enough yet, all due to those who share their knowledge,. A massive thanks to you all xx
Just to add something of my experience. I have to friend with thyroid issues , both been treated for a long time for hypothyroidism. Neither able to use a computer.
Taking T4 with coffee and other meds in the morning, have managed to inform them about that and they now take them separately. For at least 10 years the docs have failed to educate them about this. They both have very poor quality of life.
Sadly, they are of the old school and seem to think doctors know best.
How many others are out there like these two.
HOW DARE THESES PERCENTAGES BE BANDED AROUND AS IF THEY KNOW they are doing the right thing by their patient s 😤😤
It took 5 years of visits to many different NHS medics/endos before I finally saw one with empathy who actually admitted "they saw hundreds of thyroid patients who remained unwell and dissatisfied with their treatment"
Never had such an honest admission since.
If the body does not need the T3 that the thyroid gland produces as a matter of course, then why would it bother to produce any? But is the natural T3 produced by the thyroid gland exactly the same as that produced by other glands in the body from the T4 in the bloodstream? Has anybody ever bothered to see if they are exactly the same?
On the basis that some cells convert T4 to T3 and use the T3 themselves, some cells convert T4 to T3 and pass some or all of that T3 back into the bloodstream, I can't see it as being likely that there are two different hormones involved.
(Obviously, if they were different, we wouldn't call them both T3!)
My thought is that the T3 produced by the thyroid is important. That conversion in the liver, kidneys, skeletal muscle and any other tissue which returns T3 to the bloodstream is either inadequate or somehow needs "priming" by some T3 from the thyroid. Further, that the importance of the T3 from the thyroid varies from one person to another.
Unless somebody has proven that what I suggest above is untrue, then it possibly could be true. Of course that would mean that somebody had actually compared the 2 together - but has that ever been done? Of course many other possibilities exist but it is a fundamental fact that the body really needs that produced by the thyroid gland in order to work properly.
"(Obviously, if they were different, we wouldn't call them both T3!)" - possibly, but I suggest you look at the website of Armour Thyroid where you will be told by the manufacturer, Forest Pharmaceuticals, that Armour Thyroid is comprised of Levothyroxine and Liothyronine! This statement has been accepted without question as being true by NICE. I have already told them it could not possibly be true and am awaiting an answer that I am unlikely ever to get without more prodding.
On that basis the NHS would probably believe Forest Pharma if it told them that pork chops are comprised of cement and glass!
I don't understand why the use of the word levothyroxine is such an issue for you?
The original term "thyroxine" was applied to one of the the substances found in thyroids - often now simply referred to as T4.
It was realised quite early on that the molecule could exist in two chiral forms - a left- and a right-handed version. For many years it was simply assumed that the word thyroxine referred to the left-handed version.
There was some attempt to use the right-handed form (dextrothyroxine) but that had serious unwanted effects.
Eventually, someone, somewhere, realised that it is actually an important distinction and we should be absolutely clear that the form used is the left-handed version - levothyroxine. So this became the normal name around the world.
I don't think it matters at all whether this is T4 from a thyroid or T4 from a chemical factory - they are both levothyroxine.
I am absolutely NOT saying they are identical for many reasons. Not least, the form used in levothyroxine tablets is the sodium salt. Hence the fairly common use of the name levothyroxine sodium.
When it comes to liothyronine, there is an extra dimension. For reasons that now seem obscure - certainly obscure enough that I don't know why - the synthetic form was assigned a different name. Had it been called triiodothyronine, there would, I submit, again be no case to answer. (But we should be super-careful and use the right numbering conventions to ensure it is the intended version.) Someone, somewhere instead called it liothyronine. Whilst molecularly similar to T3 (same issue with sodium making it not absolutely identical) by convention the word is only used for T3 as a medicine.
I'm pretty sure you know the above. But you have not explained sufficiently for me to understand why it seems so important? Would it be all right to use the shortforms T4 and T3 throughout?
L-thyroxine treatment in primary hypothyroidism does not increase the content of free triiodothyronine in cerebrospinal fluid: a pilot study.
Sjöberg S1, Eriksson M, Werner S, Bjellerup P, Nordin C.
Author information
1Department of Medicine, Karolinska Institutet, Karolinska University Hospital, Stockholm, Sweden. stefan.sjoberg@ki.se
Abstract
The association between cerebrospinal fluid (CSF) and serum concentration of thyroid hormones and pituitary thyrotropin stimulating hormone (TSH) was studied in nine hypothyroid patients (HT) before and in seven after L-thyroxine treatment. With L-thyroxine, median free T4 increased 4-fold in serum (3.5 pmol/L vs 17.5 pmol/L) and 3-fold in CSF, (3.9 pmol/L vs 11.5 pmol/L). Correspondingly, total T3 in serum increased two-fold (0.9 nmol/L vs 2.2 nmol/L). Unexpectedly, free T3 concentration in CSF was similar (1.5 pmol/L vs.1.5 pmol/L) before and during treatment. In HT, TSH in serum correlated with TSH in CSF as did free T4 in serum and in CSF. During L-thyroxine, the correlation with TSH in serum and CSF remained. Likewise, the free T4 concentration in serum correlated with that in CSF. However, no correlation was found between T3 in serum and free T3 in CSF. It seems evident that free T4 in serum equilibrates with that in the CSF both in the HT and during L-thyroxine. Despite a two-fold increase in total serum T3, free T3 in CSF remained unchanged, which agrees with previous results in rats showing that T3 is less exchangeable between serum and CSF. Alternatively, an accelerated conversion of T4 to T3 might have maintained the concentration of T3, due to strongly increased levels of TSH found in the hypothyroid state. The notion that free T4 in serum reflects the CSF concentration of free T4 is consistent with previous reports from studies in animals.
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