Back to the so****g TSH - AGAIN!

Ok. So, still seeing an endo in Warwickshire who was really nice and supportive - when I wasn't taking more of an active participation, and now I find that this endo is wedded to the TSH tally. Last visit saw me being smilingly warned that my suppressed TSH will no doubt lead to atrial fibrillation and that it's my choice, that I wouldn't really want to go down the blood thinners and ablation route and then followed by a total dismissal of my questions about adrenal fatigue; as long as the synacthen test was fine (was given it 2 years ago by another endo, in passing after my asking him about it, at 2.00pm during a stressful day without any warning) then that was all there was to it - there was total dismissal of the salivary tests - didn't even acknowledge my question.

What is this with the TSH? It has taken me three days to begin to subside from acute and horrible anxiety at the thought of doing myself in because I'm on 2 grains with a suppressed TSH, even though the fT4 and fT3 are well within the 'normal' range, as opposed to optimal.

These endos can't all be talking codswallop, can they? I had the Endocrinology society and NICE trotted out at me as well as the Evidence Based blah blah, and I felt utterly awful when I came out. I felt that this was a doctor who asserted that they are THE DOCTOR and that, unless I am weak and desperate and tearful and beaten (which I was when I was there last time and the endo was sweet and supportive and actually constructive) whatever I say to try and participate in my treatment is treated as insurgence and is put down with cool, smiling efficiency and a couple of citings of studies and lots of words but no actual references.

Are there any endos who will challenge the atrial fibrillation and the TSH conundrum, and who treat symptoms and who don't kill their patients? And who haven't been hounded to death by the GMC?

18 Replies

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  • I'm sorry you've been disappointed by your Endocrinologist's apparent change of heart. They have never had experience in the use of NDT and even Dr Lowe wrote this to the BTA but they refused to answer despite 3 annual reminders.

    They are afraid of losing their employment due to the BTA's guidelines that only T4 be prescribed.

    thyroidscience.com/Criticis...

    hormonerestoration.com/Thyr...

    web.archive.org/web/2010073...

    Excerpt:

    Thyroid Science

    1(1):C1-C21, 2006

    ThyroidScience.com

    Criticism Four 2003 Studies of Thyroid Hormone Replacement Therapies:

    Logical Analysis and Ethical Implications

    Dr. John C. Lowe

    Director of Research: Fibromyalgia Research Foundation

    FibromyalgiaResearch.org

    Abstract

    "Replacement" is the most widely used approach to thyroid hormone therapy. Clinical practice guidelines define replacement therapy as: adjustment of a patient’s thyroid hormone dosage so that his or her TSH and thyroid hormone levels remain within current laboratory reference ranges. Overall, the endocrinology specialty endorses T4 replacement as the preferable approach to thyroid hormone therapy.

    Four studies published in late 2003 compared the effectiveness of two types of replacement therapy, T4 alone and combined T4 and T3 (T4 /T3 ). In three of the studies, [1][2][3] patients who took part had been suffering from hypothyroid symptoms despite their T4 -replacement therapy. The studies showed that neither form of replacement therapy improved the patients’ symptoms. In the fourth study, researchers gave psychometric tests to hypothyroid infants after they had been on either T4 - or T4 /T3 -replacement therapy for six and then twelve months. Compared to healthy infants, hypothyroid infants on both types of replacement therapy had

    impaired psychomotor function.

    In reporting this specific result of the studies—that neither type of replacement therapy effectively relieved patients’ symptoms or abnormal neuropsychological test results—three groups of people have misrepresented, perhaps inadvertently, the outcome: the endocrinology researchers who conducted the studies, the endo-

    crinologists who commented on them, and the journalists who reported them. Rather than reporting the specific study result, these groups reported a false general conclusion: that no approach to T4 /T3 therapy (replacement was the

    the only one they tested) was more effective than T4 alone. This false general conclusion violates a rule of quality scientific reporting—that we precisely formulate our statements to accurately convey conclusions that we can validly deduce from the studies we report.

    Oddly, based on the negative outcome of these studies, some endocrinologists advise that T4 -replacement should remain the treatment of choice for hypothyroid patients.

    Their advice, however, disregards two humanitarian imperatives:

    (1) The endocrinology specialty must officially and publicly concede that many patients continue to suffer from hypothyroid symptoms despite their use of replacement therapies. This is especially important in view of other studies. The other studies suggest that for many patients, T 4-replacement therapy increases the incidence of potentially fatal diseases and boosts chronic drug use to control the patients’ hypothyroid symptoms and those of the other diseases.

    (2) These patients must have access to alternate thyroid hormone therapies, especially TSH-suppressivetherapies, that are safe and effective for them.

    These imperatives require that the endocrinology specialty now impartially consider approaches to thyroid hormone therapy other than replacement.

    Alternate thyroid hormone therapies are already in demand and in widespread use by hypothyroid patients for whom T4 -replacement is ineffective. These patients, many clinicians, and some researchers report that the alternate therapies are far more effective for the patients than replacement therapies. The endocrinology

    specialty’s objections to these other therapies have been either speculative or based on invalid conclusions from studies.

    This imposes an urgent scientific obligation on the endocrinology specialty: that it now open-mindedly reevaluate its objections to alternate thyroid hormone therapies. This is essential on both humanitarian ethical grounds. In light of this obligation, endocrinology researchers must now cooperate in comparing the safety and effectiveness of replacement therapies to the alternate therapies. They must do this by reassessing without prejudice the already available historical, scientific, and clinical evidence; and by then conducting new,well-designed comparative studies.

    The endocrinology specialty faces a dilemma in considering a reassessment of its objections to alternate thyroid hormone therapies. It will find that it can best serve the welfare of hypothyroid patients for whom T4-replacement is ineffective by providing them with alternate thyroid hormone therapies. But, by providing

    other therapies for these patients, the specialty will risk losing financial support from the corporations that profit from its endorsement of T4-replacement. The result for the endocrinology specialty is that it will be compelled to show a steadfast commitment to scientific truth and patient welfare, or risk being deemed corrupt.

    web.archive.org/web/2012081...

    please note:

    (2) These patients must have access to alternate thyroid hormone therapies, especially TSH-suppressivetherapies, that are safe and effective for them.

    These imperatives require that the endocrinology specialty now impartially consider approaches to thyroid hormone therapy other than replacement.

    (this is what you are doing by using Armour).

    This is yet another from Dr Lowe and you can give the Endo his CV.

    " I have now gotten many of these patients well by using doses of Armour or Cytomel that my partners consider excessive. Their main concern is that the doses I use may cause heart arrhythmias. A local endocrinologist recently told one of my partners that sooner or later, I'm going to cause some of these patients to have heart attacks. Because of the documentation you give in the book, I'm comfortable using doses of thyroid hormone that are obviously necessary for the patients to get well. I am curious, however, what your current position is on the issue of thyroid treatment and arrhythmias.

    Dr. Lowe: Hardly a week passes that I don't receive an email from a physician asking the same question you have. My answer here is typical of what I send to them.

    The major concern of our research and treatment team over the years has been the safety of our patients. Out of that concern, I've given the subject of thyroid hormone therapy and heart arrhythmias intense focus. I have studied the entire research literature on the subject. In addition, our research and treatment team may have run more ECGs (EKGs) and ordered more advanced cardiac testing than any other clinic not specializing in cardiology.

    We ran so many in years past that the results forced us to a conclusion: it's the rarest exception when the ECG rhythm of a patient is of concern"

    web.archive.org/web/2010103...

    They talk about Evidence Based etc. etc. but Dr Low, scientist, doctor, etc. etc. has proven in his studies that whatever they have used for 'evidence based' is not Evidence Based and we who don't get well on levo can clarify this.

  • Shaws - I can't reply to your answer comprehensively because I need to read and digest it - I've pasted it onto a word doc so that I can read it and take my time - but for now I just wanted to thank you so much for taking the time to write. I've downloaded the links and printed them off also - it might take me a few days to assimilate, but I guess the gist is, it's all down to what doctors are willing to try for their patients well being as opposed to tow the party line, adhere to evidence based practice when the evidence is so scant and therefore barely applicable as to be almost a joke (if it were not so critical).

    And where the hell do we go if we feel under confident about self-medicating after having the cr*p scared out of us by doctors earning £180 per hour for the privilege of telling us what to do without so much as a nod in the direction of our genuine concerns or real evidence? To say I'm p'd off is an understatement.

  • Self-medicating isn't recommended but sometimes our hand is forced i.e. we either remain quite unwell or get worse by following the 'experts' advice or go it alone (with the help of members on this forum).

    I have also self-medicated too but am now well and am thankful my GP prescribed T3 only. I also buy it myself on holiday (just in case it's withdrawn) and I was also good on NDT (I had to tried several). Once you find one that suits, there's not much problem. We know when we take too much (pulse and temp) usually, so slow and careful is the way to go.

    Sometimes, I copy too much info but you can take your time - we wouldn't have expected to read loads of stuff in order to know more than doctors but if we can get well it's worth it.

    Dr Lowe was an Adviser to Thyroiduk.org.uk before his early unexpected death and he was a humanitarian in that he resigned his Licence rather than be prosecuted (like Dr P and Dr Skinner) but was angry that doctors have been persuaded by Big Pharma to supply only levo (monetary incentives) and in such low doses that the patient doesn't recover. I suppose the doctor then prescribes other medication for the remaining symptoms so the money rolls in for the pharma companies.

  • I questioned being treated by my TSH range to the GP (and they don't care where you are in it ,usually top end)and he told me there was no point talking to him about it because at the moment the TSH is all they got.Its just hopeless.

  • Lizzy, Protocols don't stipulate where in range TSH should lie. If top of the range is acceptable to your GP why isn't bottom of the range (still within range) equally acceptable? I think a lot play safe and consider mid-range to be 'perfect'.

  • I'm aware of an endo in warwickshire although very anti NDT will look at T4 T3 and prescribe T3 let me know if you would like details

  • Thanks, sofs, but I didn't do too well on T4 and T3 in the end. The Naturethroid is making the difference. And why the heck should any blasted endo be anti NDT, for goodness sake?

  • Hello there. I too am looking for an Endo in Warwickshire,but preferably one who is broad minded...do they exist? Thanks

  • I've just had exactly the same problem last night from my private Endo. I was so disappointed as she had been recommended as being more interested in symptoms than TSH. I'll work it out even if I have to treat myself and get private bloods all be it very rarely due to cost of testing and supplements and my own T3 adding up.

    I totally get why you are so fed up. I truly thought the endo I had found was on my side! It's a real side blow when you get told this.

  • Pm'd, donna!

  • Schenks, I find the suppressed TSH = atrial fibrillation + osteoporosis argument baffling. I think the perceived risks have largely been extrapolated from research into hyperthyroid patients with suppressed TSH and elevated FT4 and FT3. There is research showing low TSH (but not suppressed) doesn't increase the risk of either. sciencedaily.com/releases/2...

    I suspect there is insufficient research into the long term effects of suppressed TSH and in-range FT4 and FT3 and doctors are being conservative and cautious.

    One member has had AF after having suppressed TSH but not had ablatement or blood thinners as far as I'm aware. AF and osteoporosis also occur in euthyroid patients. I see it as a trade off, sufficient replacement to feel well now versus potential adverse health outcomes in the future.

    My TSH ranges between undetectable and 0.01 to avoid recurrence of thyCa. The risks of AF and osteoporosis due to suppressed TSH have never been mentioned to me in the 3 years since my thyroidectomy/RAI. Endo was mildly concerned last September when FT3 was considerably over range saying "We don't really know the long term effects" and I willingly reduced dose by 10mcg which dropped FT3 to mid-range.

    I had a DEXA bone scan 2 years after being on suppressive doses which shows mild osteopenia. Osteopenia is more likely to be due to my tall thin frame, very early menopause, severe vitD deficiency and age, than TSH being suppressed for 2 years, I think.

  • Thanks, Clutter - and I've saved that link to Word also. I had a bone scan a couple or so years ago - perfectly normal, and i had a 24 hour heart monitor last year. the latter was mumbled past me by my GP but the gist was, I think, that there was nothing exceptional there although they did see the ectopics but then not really ... I'm very p's off with doctors. They are so establishment - there's a brilliant book out by a boffin about the Establishment. It really is quite frightening. And I am neither paranoid nor a conspiracy theorist - so far!

  • I think I may have seen the same one - let's just say that as she wanted a non-suppressed TSH, that's what she got. When you get your own blood tests done privately there are ways of making them show what you want them to show ;-)

  • Pm'ing you ...

  • We had the same argument with my OH's endo the other day. While it's great that the endo will prescribe T3, he's equally convinced that TSH suppression is going to kill her. I asked him to explain why and he waffled on at length about T3 and T4 receptors - frankly making no sense at all - if he was listening to what came out of his mouth he'd have realised he was making completely contradictory statements. I gave up in the end - life is too short.

  • That's how they manage you - they blind you with science, so they think. The truth is, they wear you down.

  • For the first time since he prescribed T3 for me almost 4 years ago, my endo has come out with precisely the same stupid rubbish! My TSH has been suppressed for all of that time and he has never once mentioned the AF before now... I wonder if they're being 'got at' on the QT... Came away very disappointed yesterday, although I managed to convince him to leave my own regime in place as I felt well on that. I'm down for another review in 12 month's time...

  • Actually, this is worrying. There is a consistent story of doctors who were previously interested in alleviating symptoms backtracking. It does have a waft of something going on, doesn't it?

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