Hi, I was diagnosed with under active thyroid last November, been reading up as despite being told levels are now normal have had no improvement in fatigue and have developed hip and shoulder pain over last couple of months.
Been reading that many of us have trouble getting right level and type of medication, but not surprised if GPs work to the kind of protocols I came across in this document, surprised so little emphasis put on how patients actually feel!
They even seem to suggest that vitamin and mineral supplements shouldn't be taken which is contrary to everything else I've read. Confused!
If only the sentiments in item 1 above were followed. High-quality, unbiased evidence-based information which challenges beliefs presently held by such bodies is in existence aplenty, but disregarded, especially in the treatment and control of hypothyroidism, where old long-held but incorrect ideas are still entrenched. In addition rigid statements about patients being within or outside ranges and being mechanically diagnosed according to their position shows a basic misunderstanding about the statistical nature of diagnosis rather than the "shoehorning" absolute approach (in or out of range) as well as realising that patients each have their unique placement within the reference ranges. In which case, patients can shown signs if they show values still within the range but far from their set points. For example, if a patient when completely well had a TSH of 1 (range 0.5-4), FT4 of 19.5 (range 10-22) and FT3 of 6.5 (range 4-7.5), but presented to the doctor with TSH 2.8, FT4 13, FT3 4.8, would any doctor think of giving presentation advantage over numbers? Probably not for the simple reason the doctor would not have access to completely healthy numbers - you don't go to a GP when perfectly healthy and say "Hey doc I'd like thyroid function tests done". A dusty answer would be the response I fear. So if all you can go on is the "sick" presentation, then symptom scores should be as or more important than biochemical test results.
It may very well be that "high-quality, unbiased, evidence-based
information about hypothyroidism is made available to patients and the public" but every relevant trial I've ever read up states that no such evidence currently exists and more research is needed. Until that evidence is produced, why on earth should I or anyone else believe a single word that the BTA or BTF or any other non-patient charity has to say about the matter???
The NHS offered me levothyroxine alone for my lack of a thyroid gland and NO ADVICE WHATSOEVER on what I should do about my continuing ill health for EIGHT years following a total thyroidectomy and RAI. That was to save my life from a multinodular goitre and the possibility of a reoccurrence necessitating a FOURTH, highly dangerous operation on my neck.
I had to root out my own solution which was Thai NDT/Thyroid-S.
WHY exactly should I believe the words of any registered charity that gives instructions to my doctor on how to treat me when the instructions he MUST follow would keep me permanently ill for the rest of my life???
I would appreciate a reply that makes some sort of sense as nothing else regarding the "official" recommendations for the treatment of hypothyroidism displays this quality. The BTA/BTF are treated as if they are omnipotent and godlike in nature - I would use vastly different words to describe them.
If I wanted a proper diagnosis - which I never had for many, many, months probably years by any doctor/consultant or even by the A&E cardiac dept a week before I got a diagnose through my own efforts (advised by a First Aider who could see my swollen gland) to get tested which showed a TSH of 100. The last document I would read is by the BTF or BTA.
The most sensible site I found was Thyroiduk.org.uk and it put me on the right path to give me my life back with relief of all symptoms. I also saw two good doctors - the last in the line it seems with regard to sensible diagnosis and medications and not just sticking to levothyroxine only if patient wasn't improving. One doctor resigned his licence as we was being pursued by daring to give patients a trial of hormones due to their symptoms and by prescribing NDT if they'd already been diagnosed elsewhere and weren't improving on levo. The other doctor prescribed according to patient's symptoms and again, if they weren't improving on levothyroxine would prescribe NDT (the very original replacement before levothyroxine). For this he was pursued and despite his efforts to have a Conference with all of the Endocrinologists, none accepted his invitation about the Parlous Situation with regard to patients' health. Not one accepted and the last withdrew the day before the proposed Conference. For this he was then pursued and appeared before the GMC several times but never found that he mistreated patients but it cost him his life by the strain of this persecution. It certainly wasn't his patients who complained as 2,500 testimonials were received by the GMC saying that their lives had been saved by this doctor's diagnose/treatment.
So, for people who appear not to take any notice of ill patients (they must think it is 'fashionable' to request a trial of NDT or adding T3) they appear never to have read any Research Documents.
I don't think there's much scientific evidence within the BTF, as we on this forum read far more than the Professionals it would seem to me and so many members have been disappointed, particularly if they've paid, to come out of the consulting room with hopes dashed. They've even made False Statements about a product which has been used since 1892 and saved people from a horrible death.
Well not being medically qualified I can be ignored but not struck off! So I suppose it'll be the ostrich treatment! Once I was a civil servant scientist and I know how to nullify an argument simply by not dealing with it. If you wanted to survive, passing the buck became a fine art though I'm not proud of it..
In Box 1 it suggests vitamin D, B12, folate and ferritin deficiency may be among reasons why patients on Levothyroxine may be experiencing persistent symptoms. Where does it say that vitamin and mineral supplementation should not be made?
Perhaps they should have expanded it to say "except in the case of vit/mineral deficiencies and as prescribed". Looks like they don't want patients self supplementing which is unfortunate considering how many members are told by their GP to buy vitD and iron over the counter without any guidance on how much to supplement.
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