Thought people are fighting for better and more accessible treatment not cutting it back... Hasn't there been enough patient outcry?
Why isn't there one united body of specialists to give a real voice to this issue?
Contrary to what this article is saying Levothyroxine has given me my sanity and life back. Yes, it took approx one year to get the dose right and start felling the real benefits... but there is no overnight mirracle solution to this antway...
You are one of the (highly likely) lucky ones who can use T4 and get good results. This forum does not involve people who have your successful outcome on T4 alone. The forum deals with the minority (10-15%) of patients who are not able to use T4 only and get a satisfactory result. The Daily Mail article is as is usually the case, facile and has a popularistic approach. You ask why there isn't a united body of specialists to give a real voice to this issue? There is! It's called the accepted way of doing things. Unfortunately, this is now shown to be wrong and in urgent need of reassessment. I'm not sure what your point is. Your socalled bodyof specialists trying to change things is not a body, but a few individual scientists trying to make their voices heard against the great wall of indifference and naysaying. Please realise that a good number ( many thousands) of patients in the UK have not had your adequate response to standard therapy.
Hi diogenes , may I just say that this forum IS for those on T4 solely when their health is compromised by the so-called professionals who decide blood levels are inconsistent with guidelines and meds should be lowered. Without this forum - where I have been welcomed by most - I would now still be suffering and believing no-one could help me. Well I have been helped by the articles and comments posted on here and while I am not in the 10-15% that require T3 also, I am in the 10% that have had this (hypo) condition from birth and I thank my lucky stars to have this forum to look to for advice and comfort.
Despite having survived very well on T4 meds alone until 2012, when my meds were arbitrarily lowered based solely on results, I became the same kind of patient as you...needing answers and finding them here.
Even when (hopefully soon) I find my optimal T4 dose - and return to the land of the living - I will still continue to visit this forum for the community care provided.
ZippyAppletush You make a good point that all too often people end up here not because Levo isn't, or can't, benefit them, but because their Dr is uneducated, ignorant of the facts about thyroid functioning and dysfunction, unable to properly interpret test results, closed-minded about how to dose Levo etc etc etc.
Thank you, MaisieGray . If I had continued to tootle along quite happily on my optimal dose I would have still been oblivious of the nightmare thyroid patients have endured and are enduring! I would also have been oblivious to the lies (or ignorance) told when I lost three pregnancies and was told my hypothyroidism had nothing to do with the losses, nor was I given added meds to compensate. My last pregnancy was mid 90’s so the knowledge was available to the doctors!!!
Regardless of long term thyroid conditions or just diagnosed, T4 or combo therapy, this forum is for all. I only hope those that need it do find it, as I did. It’s saved my sanity and is on course for saving my life...it’s that important to me!
I'm sorry to hear of your miscarriages, my experience was the opposite - I was told I was so ill on diagnosis that I'd never get pregnant again and should throw away the Pill - I did and immediately became pregnant .... consequently the whole pregnancy was taken up with concerned medics believing that my baby would be born a cretin, as they were known as then, as there was far too little of my own T4 to meet the needs of the developing foetus' brain and general physiology. The point being that until medics understand and accept that there is no absolute treatment, dose or response to having a thyroid disorder, we''ll continue to meet with such intransigence demonstrated in the original BMJ article. In my case-, I went on to have 30 yrs of very good health and well-being on mono-Levo treatment; but my son has had a lifetime of Crohn's to contend with, so coincidence or not?
Hi MaisieGray and apologies...just wrote a long reply to you and lost it in going to check out a word! If it turns up, great!; if not, I’ll be back, I just need to sort out my daughter. Please bear with me!
Hello again MaisieGray . Thank you for your concern and mine for you and your son. Unbelievable that the very people who say you won’t get pregnant then give you such a devastating statement as cretinism when you do! I’m so pleased that wasn’t the case but I’m not surprised that they would be so crass.
I don’t believe in coincidences any more, at least not in medicine.
With respect to your son’s Crohn’s my daughter was born with hydrocephalus and I’ve wondered if the lack of increased T4 was at fault?
Too many times it’s the patients that prove the point, often at personal cost in health. Pity we can’t train a medic ourselves to know about thyroid conditions - and the unexpected! - and then have them infiltrate the system and retrain other medical brains to think for themselves! 😂
If doctors cannot even use T4 therapy successfully on those patients who will benefit, then medicine is in a sorry state indeed! But I still think looking at posts in general that the great majority concern those who cannot use T4 alone to get an adequate outcome. That seemed to me the impetus for setting up this forum in the first place. The big problem is when to start therapy when signs and symptoms begin, based on how severe those signs and symptoms are. It's a big dilemma: for some people if you start too soon with too low a starting dose you can make matters worse, whereas for others early intervention is beneficial rightaway. What we need to put over is the individuality of response, the need to talk with the patient and look at them rather than the computer screen. Optimizing therapy is an art not a science.
Hi diogenes and thank you for your reply. It was just a part of your comment that irked me, and I felt I should say something. I’m getting adventurous in my old age and while I would previously have said nothing, nowadays I tend to be a bit more vocal. If you don’t speak then no-one hears.
I was one of those lucky ones who lived well on Levo alone but I needed help when the doctors decided I was over-medicated and when they
failed me I turned to the internet. This forum probably was set up to deal with those that sought help when T4 wasn’t sufficient, but in this so-called modern, enlightened world greed outweighs common sense and decency, and patients suffer.
I was too young to know what was wrong as a baby but my mother fought for me as did the doctors then, and up to 2012 all looked out for ‘me’ rather than the figures on their reports, as it should be. Hopefully with all our voices now we might effect that change again, and the ‘experts’ with their ‘experience’ might actually sit up and take notice of us. As you say, ‘the need to talk with the patient’...and hear what we’re saying!
I think you are missing my point! My point is that the recommendation is to hold back from giving even T4. While I do happen to be lucky for the moment/responding to T4, it did take me more than 7 years to get my severe symptoms and 10+ TSh acknowledged and could only see a specialist privately. My T3 is borderline and under review so not trying to separate sufferers into more or less special!
The article is suggesting that practitioners hold back untill symptoms are severe etc which is what happened to me and cost me many years of pointless suffering, antidepressants etc etc...
That is the 1st time I have read this forum does not involve people who have a successful outcome. I was under the impression this forum was for all people with thyroid interest.
My take is that many of those who are diagnosed and then treated adequately - and do well on levothyroxine monotherapy tend never to end up here. Not in any way that they shouldn't be here, that they shouldn't be involved. Just why would they bother looking for a thyroid forum if everything is so rosy?
I do pretty well on levothyroxine only. So I could easily understand someone just taking the little white tablet every day and leaving it at that. In reality, the subtleties can affect all of us. Which make? Precise dose? When to take?
We do notice quite a number who used to do fine but something changed and they now need help.
I am very cross too reading this. I imagine the medical article is as a results of something quoted as research a year or so back in which it was claimed that elderly people were more likely to fall if they are taking levo. There does seem to be an agenda to reduce and untreat elderly people I have been keeping an eye on this.It was the BTA quoting this 'research'. I managed to get to read what was no more than a survey and was frankly embaressed on behalf of the BTA and American thyroid association for their stupidty in having quoted it. The study involved a very small number of over 65 year olds who attended hospital after a fall. Thye were all taken from a cohort arriving in casualty over 24 hours. It was apparent that elderly people taking levo were more prone to falls. What was not recorded was 1) The dose of levo they were taking. 2)Their thyroid bloods which were not taken r 3) their symptoms or other medications.
All this little survey demonstrated was that elderly people diagnosed hypothyroid are more likely to fall, the reasons why are not even considered so how they managed to jump to the conclusion it was to much levo causing the problem and not too little beggers belief and the fact that people we have spent vast amounts of money training to be doctors can embaresses themselves by quoting it as 'research' when it is little more than a put your hand up to having fallen count is infuriating.
"So when influential doctors’ magazine the British Medical Journal last month advised against prescribing the medication to a large group of patients there was, understandably, an outcry.
In the article, some GPs and researchers claimed one of the most commonly given drugs, levothyroxine, did little to improve their condition."
...
"British Medical Journal experts argued for even stiffer criteria, and that levothyroxine treatment should only be given in extreme cases. But Dr Salman Razvi, an endocrinologist and lecturer at Newcastle University, claims the advice is flawed. He says the researchers looked mainly at patients over 65 who didn’t have symptoms in the first place."
...
If people don't have any symptoms then why would they seek treatment in the first place - why would the patient even make an appointment - and why would a doctor decide to test the thyroid in a symptom-free patient? In my experience getting testing done for anything is like pulling teeth and always has been.
And why are doctors using people over 65 as a guide to treatment decisions involving younger people?
And the paper this is all based on only treated these elderly people enough to get their TSH into the very top of the range. We all know that most people of any age still feel rubbish when they have a high in range TSH.
Another thing that is rubbing me up the wrong way...
There has been an outcry (apparently) from the British Thyroid Association (BTA) and the Society of Endocrinologists (SoE). These two organisations have been telling patients for years that their symptoms are all in their heads and they are just tired because of their age, they are a young mother, they have a busy job or some other crap like that. Well, now, some endos have taken this fobbing off and dismissal to its natural conclusion. The BTA and the SoE have been telling their members for decades that all women are liars, and now we see the inevitable end result!
I notice that some of the commenters in the Daily Mail are saying the problem is hypothyroid people being given free prescriptions. I know why people with hypothyroidism get these, but I do think that it adds to the difficulty of getting treatment. I have seen some people in various comments on articles saying that they have been accused (by other non-doctors) of wanting free prescriptions and that they aren't actually ill.
Doctors have been taught and have told themselves that being tired is the natural state of women for the last 2 thousand years, so any complainers must be mentally ill because they don't accept their rightful "station" in life.
You might well have a valid point. But we (Daily Mail comment writers especially) always need to remember that applies only in England. It also does not apply to those over 60. Or who have another eligible disorder.
pgdw Could you change the title of this thread to make it more descriptive of what it's about e.g. Daily Mail article on thyroid treatment being denied - 23/06/2019 or something similar.
The killing problem when thinking of starting up a research project in medicine is fulfilling the ethical and licensing requirements, let alone getting the money to do it. That's why so many socalled trials are "obvious" and unchallenging in their proposed topic. If the outcome is both obvious and doesn't rock the boat as regards the general beliefs it's likely to be accepted and funded. This of course doesn't mean that the trial is worth doing or is properly designed. Dr Iannis has suggested that possibly 96% of such trials are worthless as regards proving anything. Fisher has warned that the whole area is suspect and that cause and effect has been mixed up, with no safe conclusion.
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Moved and now being denied T3
Daily Mail Tuesday May 10th 
Daily mail piece on over medication
Daily Mail Saturday 9th October
Professor Colin Dyan quoted in Daily Mail
