Well - after doing battle with an endocrinologist who doesn't believe in T3 and a GP who thinks it's too dangerous, I decided to self medicate T3 and have been doing so since the end of March. I've been feeling like a new person since then - many of the hypo symptoms that would not shift despite a daily dose of Levo 125/150mcg alternating - despite a TSH scraping along the bottom limits of detectability with no hyper symptoms!
To cut a long story short I take 25mcg T3 along with 120/125mcg alternating, no adverse effects. I'm gluten free and taking selenium and vitamin D.
The most recent blood tests revealed:
TSH 0.03 (0.35-5)
T4 13.6 (9-24)
T3 6.7 (3.5-6.5)
I received a panic call from the surgery to book an appointment to see the GP urgently as she feels I'm over medicated - I really feel like telling her to get lost! They wouldn't listen to me when I was feeling like death for so long.
Please could you advise if you think this regime is OK, I think it's fine - and just putting too much on the blood and not how the patient feels!
Your thoughts would be really appreciated - many thanks in advance.
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Girlpower
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Girlpower, TSH 0.03 is suppressed as expected when taking T3. FT3 is slightly over range and it's generally advised that FT3 should remain within range. Reducing your T3 dose to three quarters of a tablet (18.75mcg) should be enough to drop FT3 into the top of range or reduce T4 by 25mcg.
That's really helpful, thank you, I think I'll look at reducing the Levo by 25 as the weathers been warmer - my T3 was always low and feels better higher and the TSH better really low!
I am so angry that the "medical professionals" allow people to suffer for so long and pooh pooing the benefits of T3 (I realise it doesn't suit everyone) but at least offer people the chance, though I know it's really down to cost not quality of life, perhaps they should do a few months of what we live with!!
Really have to giggle at your post: endo and GP feel that T3 is dangerous. Wow!
Why on earth then are they prescribing T4? Do they not realise (probably not) that T4 converts to T3 - or should do, and it is T3 that the body actually needs....
Dr. Lowe: I am comfortable advising physicians on the use of T3 because of my knowledge of the hormone and my experience (both clinical and experimental) with its use. Moreover, my book The Metabolic Treatment of Fibromyalgia is a comprehensive text on thyroidology and contains more scientific information on the use of T3 than any other book ever written. In contrast, most conventional endocrinologists have little to no knowledge of T3. Also, they have little to no clinical experience with its use. Therefore, for them to represent their opinions about T3 as expert advice is a pretense and raises ethical questions.
Conventional endocrinologists' lack of knowledge about T3 results from conduct that is clearly unscientific—that is, overall, they accepted without question mandates passed down to them by old guard thyroid specialists, much as loyal military personnel obediently and unquestioningly comply with orders from higher command. The particular mandate of conventional thyroid specialists I refer to here is this: "The only thyroid hormone preparation a doctor should ever prescribe is T4 (thyroxine)."
To the discredit of both conventional endocrinologists and the thyroid specialists whose edicts the obey, this mandate is not scientifically based. Instead, it’s based on a powerful marketing campaign of a major pharmaceutical company. This marketing campaign, not science, is precisely why most doctors robotically write "Synthroid" on their prescription pads when they learn that a patient is hypothyroid. Conventional doctors, including endocrinologists, have allowed their minds to be utterly subjugated by this marketing campaign. As a result, they’ve deprived themselves of clinical experience with any thyroid preparation other than T4.
So, the wariness of conventional doctors, including endocrinologists, about the use of T3 is born of ignorance. Thus, as a whole, they are the least qualified doctors from whom to seek expert advice about T3.
I am completely stunned and staggered at their lack of knowledge, the computer most definitely says no - that they are fully prepared to let the suffering continue - it is cost as well, it's scandalous that for a box of 28 20mcg tabs cost £100 and if you want a private prescription will set you back £140, I asked the pharmacy across from our surgery how many prescriptions for T3 they give out and it's 3!! Well there is more money to be made out of keeping people ill - antidepressants, blood pressure meds, statins etc etc friends and family I've told about this are also shocked - perhaps by us spreading the word it will be recognised that there's a whole lot more to thyroid than taking a tablet every day, a pat on the back and told to be on your way!
I just don't understand that they can ignore a desperate patient sitting in front of them. Some are very nasty and who/where does the patient go. One of the saddest stories which was posted a couple of years ago on this forum, was of a bereaved husband, left with 3 children to care for as his wife jumped into the Irish Sea and drowned. How many suicides are actually due to undiagnosed/undertreatment?
Where has the knowledge of the 'old school' gone where treatment was till the patient was well (NDT) or given a trial to see if there was an improvement.
If you borrow Tears Behind Closed Doors by Diana Holmes from Thyroiduk.org.uk who joined Dr Skinner and both tried to educate the BTA and RCoP (as Dr S was) but were ignored completely. You will find this book an eye-opener too.
Also Lyn Mynott who started Thyroiduk.org.uk due to her experience.
That's so incredibly sad - and unnecessary - they're more than happy to dish out the antidepressants and not question/ treat the root cause, very happy to ignore symptoms whilst paying too much attention to blood results (only part of the puzzle), I have experience of this - and it went away after starting the T3
I think a year or two ago 28 tablets of T3 was about £28. I have no idea why in the UK it has hit such a high price. Is it so that we or the NHS cannot afford it?
In my view, because Mercury Pharma saw a gap in the regulations. While it was a branded medicine (used to be Tertroxin), there were price controls. Once it became "generic" (i.e. Liothyronine), despite being 100% identical, it was not under the same regulations. The price controls were devised to ensure that branded medicines could not be hugely over-priced. The thought being that if a generic were to be so over-priced, another company would dive in and compete on price. So far, no other company appears to have decided to do so.
I certainly wouldn't point my finger at these companies and suggest "collusion", of course they are not colluding, but in a fictional world we might have suggested that as a possibility.
The reluctance to prescribe in the first place pretty much guarantees a small, limited market. So not very attractive for a competitor to enter the market given the significant expense of bringing any medicine to market. But remains a profitable niche for the incumbent.
I know - which planet are they from! How on earth can they think that T4 is the best - obviously been brainwashed along the way - the rubbish they spout, I've been close on several occasions to telling them exactly what I think, it's going to be an interesting GP consultation on the 19th May, bring it on! He he he
The problem is that they will not change the guidelines and doctors in the past who have done so have been brought before the 'authorities' and some have lost their licences. Dr Barry Peatfield for instance treats patients as we was taught. He also studied in the Broda Barnes Institute in the USA but was hounded by the GMC and resigned his licence rather than being struck off (for making patients well!)
We need to make the "authorities" accept that thyroid is not/ should not be the poor relative of the endocrine world - compared to diabetes for example, would they /do they let diabetics suffer in the way we do
It is because they have been brainwashed that only the TSH is the primary way to diagnose/treat. Of course it has to be way out. If it is in range whether we are taking thyroid hormones or not we will not get prescribed or an increase or medication.
If we still have symptoms or get new ones, they are all treated as separate to the thyroid gland. One Eminent Endocrinologist a speaker at the ATA's 2013 Conference stated that only the TSH should be taken into account and if we have a dissatisfaction with levo and still complain we have (not hypothyroidism) a 'somatization disorder'. So we will have that on our medical records and prescribed whatever they suggest or sent to psychiatrists. Is it because we are mainly women and the Endos mainly men. One of our doctors (a Virologist) in UK who was brought into the Thyroid Field unwittingly and treated patients as he was taught, appeared before the Authorities many times and it wasn't his patients who were complaining. Who was?
I had a different comment from Endo, T3 not important! Oh and I wouldn't be capable of taking it! That was after a long discussion about working in the medical school!
It's so good to be part of such a great forum with so many people sharing their knowledge and experience - I've learned such a lot and I'm sure you'll be on the road to better health too!
Girlpower, if you feel well on that dose and Don't feel over-stimulated, I see no reason why you should lower you dose. Stick with what you feel good on. If you start to feel a bit hyper, then you can lower your dose. But why risk upsetting your equilibrium by lowering it now?
I do exactly that - I find the infrequency of blood testing completely inadequate anyway and have been hypo long enough to recognise symptoms and adjust doses accordingly, much to the horror of the GP's initially, they do leave me alone on that now though!
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friends and family I've told about this are also shocked - perhaps by us spreading the word it will be recognised that there's a whole lot more to thyroid than taking a tablet every day, a pat on the back and told to be on your way!
Recent results after starting on small dose of T3
Update after starting T3
Blood results after starting Levo. advice please
First results after moving to T4/T3 combo treatment
