This is triggered in part by Sue's post about being left for ages post RAI while the system gets around to dialling in a proper replacement dose. They sent me off for 3 months on a derisory 50mcg of T4 after a TT for a cancer in 2005, and have long since lost track of me....
Getting even a routine amendment to a prescription meanwhile requires paying a fee and running the gauntlet - hoping that it'll prove possible to talk some doctor or other into making a sensible adjustment - often while heading off the wholesale daftness and lack of awareness of the reality.
There's to my mind a major problem with the handling of the dialling in of thyroid replacement in general - it's not just in the case of RAI, or thyroidectomy, or T3. It's abysmal. Money, time and suffering intensive - and riddled with errors, administrative slip ups and an enormous helping of indifference.
I've already suggested that we need a campaign on replacement strategies in the context of continued availability of T3. This is a part of the same picture - one where the bureaucratic imperatives and indifference to the voice of the patient have enabled some very bad decisions.
I'm in ireland, but our situation sounds very similar to the UK. The reported pressure to extend the review/test/adjustment cycle in the UK to 8 weeks if true can only be just another bureaucratic response designed to save money at the expense of the patient.
Lengthening the already very long period that's allowed to elapse between dose adjustments potentially extends the period of dialling in (and hence the suffering and loss of normal life) to an enormous and mostly unnecessary degree. It can already take months and even years to get sorted.
The whole system of blood test driven calls by an 'infallible' doc run by a bureaucracy with minimal patient input in respect of symptoms and/or dose changes is daft.
It's hard not to think that it's not mostly about professional profit, legal ass covering, cost saving and power for the bureaucracy - plus all sorts of consequently mistakenly perceived constraints as to what's actually possible.
This bureaucratically, legally and profit inspired entire approach to dialling in replacement needs a fundamental re-think to my mind.
It's very hard not to think that there's sooner or later going to have to be an admission by the system that (a) it's massively dysfunctional, inefficient, expensive and bad news for patients, and (b) that by allowing patients to sign up to accepting responsibility for (with medical support at intervals) within limits the dialling in of their own replacement that it could all be done far more cost and patient effectively.
They have kids (with a moderate amount of training) handling their own blood testing with diabetes for example....
As matters stand my first thought is to avoid engaging with the system if I can - because I have by now a good understanding of what works for me, and because it can take many months of suffering and €100s in fees to sort out the result of a single badly called dose adjustment to what is basically a pretty good replacement regime. e.g. I lost many months of work in 2012 due to like variable potency of of hormone - but didn't dare go near the system because of the likely cost, delay and risk of bad calls being made.
If by completing a cautious trial on the quiet I can alternatively figure out the required adjustment then it becomes a case of persuading the writing of the required prescription - a less than satisfactory but much safer proposition.
Co-operative doctor/patient relationships that share responsibility for sorting out replacement and allow the patient to initiate responses when symptoms suggest changes are required have the potential to save so much hassle, unnecessary cost and suffering...
ian
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vajra
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We, as the populace, agree that some medicines have restricted access in order to protect us from ourselves. The basis of this is that if we need them, then they are made available. That is the fundamental principle of Prescription Only Medicine status.
But time and again we see people being refused access to the medicines, to the appropriate quantities of those medicines, and to alternative medicines.
The costs are unrelated to real world economics having become the subject of complex negotiations between government medicine procurement organisations and pharmaceutical suppliers. And yet people are refused specific medicines and quantities of medicines on the basis of how much they will cost!
The idea of patient controlled thyroid hormone dosing has been right at the top of my list of wants since first starting to understand anything about the issues. Certainly we need a suitable technology but I wouldn't be at all surprised if such devices weren't in development right now. (It is quite a long time ago that I posted a blog about a mobile phone-based thyroid hormone tester.) After that, we need the whole medical establishment to accept that this is something we want, we deserve, we need. And the corollary is that we should be able to get hold of the required medicines for this new regime within our own countries, without difficulty or the need for subterfuge, and at a sensible cost (whether state funded or privately purchased).
That's about it Rod. Medicine is pretty clearly (certain outstanding individuals aside) yet another broken social contract. One where self interest and vested interests have so weighed down and distorted the values of the system that it's been stripped of compassion, competence and wisdom, is made prohibitively expensive by non value adding elements, and doesn't even remotely perform at the level that given present day capability it should.
It's deserving of the 'appalling vista' term that has been applied to the way we for centuries overlooked rampant child sex abuse by many of the religious. Our heavy conditioning, and the relentless PR and machinations of those benefiting by it mean that most of society has been left unable to perceive the reality of the situation.
From the page you linked Tegz:
'Anthony Toft and Geoffrey Beckett gave a pretty accurate response to this question almost 10 years ago, and it’s still as relevant today as it was then: “It is extraordinary that more than 100 years since the first description of the treatment of hypothyroidism and the current availability of refined diagnostic tests, debate is continuing about its diagnosis and management”. [Toft A, Beckett G, BMJ 2003 (8 Feb); 325:295-296].'
Perhaps the truth is that no matter how genuine the intentions of the writers that this might as well just be the usual high flown rhetoric. That there is no meaningful debate (as in likely to lead to real change) whatsoever, and minimal motivation to get it right - just a network of intedependent self interested power groups milking the edifice for what it's worth. What we get fed is window dressing....
Just what will it take to collapse the hegemony? My personal view is that it's beyond repair.
My (irish, but seemingly not untypical) experience suggests that it's not just the odd time that the system screws up - that it's actually the norm. This illustrative list of my conditions & missed diagnoses/misdiagnoses illustrates this.
It isn't to whinge or to elicit sympathy - because most is in the past. It's impossible to describe the suffering and struggle it has entailed for all involved.
Hypothyroidism with all of the usual symptoms in severe form, and over the 15 + years to 2005. (repeated failed tests, never diagnosed - despite highly specific briefings provided to the primary doctor concerned)
Thyroid cancer in a massively enlarged thyroid that had grown down under my collar bone. Discovered during a hospital admission in 2005 for dangerously high blood pressure. (missed for many years)
Thyroid and wider auto immune disease (false negative tests, never diagnosed, found after TT)
Chronic gut problems (never diagnosed, but auto immune related?)
Gluten and multiple food intolerances. (false negative test)
Paronage Turner syndrome (never diagnosed or linked to thyroid, failed test)
Chronic sinus and UT infections. (never linked to thyroid, sinus was treated surgically leaving residual issues)
Gout and joint pain, including severe back pain. (the gout was diagnosed as requiring lifetime medication, but with the rest cleared with proper thyroid replacement leaving only the residue of back surgeries)
Kidney, adrenal and liver tumours. (apparently not - i'm still here)
Exaggerated stress responses/high cortisol for adult life. (never diganosed despite 3x hospital endo work ups - now responding to naturopathic treatment)
Consequent chronic and uncontrolled high blood pressure, seeemingly caused by above. (never diagnosed despite hospital work ups x3 by consultants, repeatedly sent away with the pills which didn't work)
Longstanding chronic fatigue. (never diagnosed, now much reduced/almost eliminated with self administered cortisol reduction and better use of T3)
Wrong thryoid replacement, multiple errors and refusals to treat both prior and subsequent to 2005. (sorted as above through own efforts)
Depression. (prescribed unnecessary anti depressants, solved by proper thyroid replacement)
Bum thyroid medication and supply issues. (ongoing variable potency and supply chain problems in recent years)
Who knows what negative effects the years of scans, accumulated radiation dose and treatment with unnecessary and aggressive medications has had? There's then the little matter of the many €1,000s paid out in fees and charges.
How many more are in this situation? Where screw ups and failures of tests and diagnostic procedures have been the norm rather than the exception?
We tend to just muddle along, and to avoid negativity. It's very informative however to sit down and list the treatments and procedures you have had, and to objectively decide what proportion of these were correctly and professionally applied....
I think that your experience can rightly said to have been 'going through the mill' for sure ,Ian.
Fortunately we have the internet now - with users more and more clued up on how to proceed in their best interest. Your list will prove a spur to enquiry, I hope!
I agree we need more action orientated groups to push for change- so I have subscribed to a couple already to help their funds.
I never know how many people respond to these requests- as info is never published on accounts etc.
I just hope they're legit and doing it for the right reasons
Are you free of gout meds now?- It can be done with the right diet.
I still have my self tester but gave up trying to manage with diet- eventually to be on Adenuric, a new drug that seems to be working well.
The unfortunate lesson of change management in industry is that it's extremely rare for fundamental change to occur without major crises and/or breakdown of the old organisation.
The old value system (the culture) blocks change and is especially hard to shift so long as the original players remain present in more than minimal numbers - and that's in industry where commercial realities tend to keep them more honest.
I find myself torn between concluding that there's little to be done beyond getting by as best we can while hoping that cycles and events we don't consciously control will create conditions favourable to change - and wondering whether or not some sort of radical action might be feasible.
I suspect the former....
The gout so far as I can tell Tegz is completely cleared. Not a twinge any more. It was already much reduced as a result of as you say diet and better replacement, but increasing the % T3 in my replacement a few months ago with the work on cortisol cleared it and fixed my gut function (as opposed to food sensitivities) overnight.
Since in addition starting work on the elevated cortisol (how that plays out longer term remains to be seen) a couple of months ago my health actually feels better now than it's been since the late 1980s....
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The Discovery of Thyroid Replacement Therapy
For those interested in Dr Lowe's method
