reduced to 30mg T3 only ???????

Just had my follow up with my endo. I am currently prescribed 75 T4 and 20 T3. My last results on this dose were TSH- 0.01, T4- 10 and T3 -3.9 and still have hypo symptoms. So taking the law into my own hands and as discussed on here. I have changed what I am taking to 25 T4 150 capsule Thyrogold which is (37.5 T4 and 11 T3) and 20 T3. I do feel better on that higher dose but still have problems not being able to cope with exercise and constipation etc. However, my endo has changed my prescription to 30 T3 and no T4 at all ?????? errmmmm that sounds like a big drop to me. I questioned it but he came out with the TSH rubbish and said that it is the only option to try because of my TSH. Seriously is 30T3 ever going to be enough? I despair.....and my follow up appointment is 4 months!!! Don't know whether to carry on with my own regime or try what he has suggested...confused.com!

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  • Ooh, I think you *do* know the answer to that. :) Taking T3 will nearly always suppress TSH, so reducing your dose to 30mcg only is unlikely to make a jot of difference - you'll just feel awful instead. Don't do it (is my opinion).

    I don't suppose you have any blood test results to go by? You haven't been on the Thyrogold very long if I remember rightly? Could you afford the occasional FT3 test?

  • Thank you Jazz. I am not changing to 30T3 only. I know it won't be enough and life is too short! I will get a blood test soon to see what is happening with the thyro-gold. I would like actually to change to all NDT and am looking at the options online :)

  • Your TSH is fine. I wish they wouldn't do this to patients. It shows they have no knowledge of metabolism which is what the thyroid hormone controls. If you still had hypo symptoms on your dose, despite your TSH, I would increase by a small amount of T3 until you feel all your symptoms are gone. You will understand I'm not medically qualified but have gone through all the usual 'avenues' and am now well on my dose at present.

    30mcg of T3 is equal to approx 120mcg of levo. I think (?) 150mcg of Thyro-gold would be equal to about 1/2 gr of NDT i.e. equal to about 50mcg levo. i.e. you are taking equivalent of 150mcg of thyroid hormones at present.

    This is an excerpt (and probably the reason why Endos etc take such notice of the TSH)

    Another false belief also arises: that "hyperthyroid" blood levels of TSH and thyroid hormone and tissue overstimulation are one-and-the-same. But this is not the case. Many people who have low TSH and high thyroid hormone levels are actually underregulated by thyroid hormone. I know this from performing comprehensive metabolic evaluations for hundreds of patients and documenting this pattern of lab values in many of the patients. Unfortunately, though, most conventional clinicians today falsely believe that anyone who has the lab test pattern characteristic of hyperthyroidism is unequivocally overstimulated by thyroid hormone. This, however, is nothing more than an institutionalized falsehood we can thank the endocrinology specialty for.

    naturalthyroidsolutions.com...

    This is another excerpt from Thyro-gold

    Most people should start with 1 or 2 capsules initially, and take that dose—without changing it up or down—for up to two weeks. Jumping back and forth on your daily dose won’t allow enough time for you to see what any particular dose does for you, good or bad. The only result will be utter confusion.

    At the end of the two weeks, after starting the initial dose, the person should evaluate any benefits of the initial daily dose. If there are no benefits, or the benefits aren’t satisfying, the person should increase his or her dose by maybe one or two capsules. Another waiting period of two weeks is then essential. It is essential to see whether that daily dose provides satisfactory benefits. Throughout the two-week time, the person should keep the dosage the same—no increases, no decreases.

  • thanks so much Shaws. I asked him where I could read about the risks of a suppressed TSH and he referred me to the NIH website and to be honest, I can't find anything really scary on there. In fact I thought the below was quite interesting as he told me that Osteoporosis was his concern

    Suppressed TSH levels secondary to thyroxine replacement therapy are not associated with osteoporosis.

    Grant DJ1, McMurdo ME, Mole PA, Paterson CR, Davies RR.

    Author information

    Abstract

    OBJECTIVE:

    Recent studies have suggested that patients receiving thyroxine are at increased risk of osteoporosis. We set out to measure bone mineral densities in two groups of post-menopausal women receiving thyroxine replacement therapy (those with serum TSH levels persistently suppressed or non-suppressed) and to compare the results in both groups with those of the local control population.

    DESIGN:

    Cross-sectional study.

    PATIENTS:

    Seventy-eight post-menopausal women who had been treated with thyroxine for primary autoimmune or idiopathic hypothyroidism for a minimum of 5 years, 44 with TSH persistently suppressed and 34 non-suppressed. One hundred and two control subjects.

    MEASUREMENTS:

    Forearm bone mineral density at proximal and distal sites as measured by single-photon absorptiometry.

    RESULTS:

    Results were expressed as Z-scores, i.e. number of standard deviations from the mean of a 5-year age-band from the local control population. Mean Z-scores at proximal and distal sites for the non-suppressed patients were -0.03 and -0.07 and for the suppressed patients were -0.20 and -0.25, representing a decrease in bone mineral density of at most 5% in the suppressed patients. The differences between the three groups were not statistically significant.

    CONCLUSION:

    In this patient population, the reduction in bone mineral density due to thyroxine is small. It is unlikely to be of clinical significance and should not on its own be an indication for reduction of thyroxine dose in patients who are clinically euthyroid.

  • There's also an elevated risk of heart problems I believe- but if you're one of the people that needs supressed TSH in order to be on a dose that allows you to function then that's just tough - we just have to minimise the risks eg through diet and exercise etc. it's a disadvantage of the condition we have. Heart conditions are also treatable. I once told a GP that I'd rather die early than live for ever feeling dreadful - he laughed and increased the dose!

  • We are told so often of people being given options of treatments, of no treatment, of coming off treatment, why the utter dismissal of the patient's own voice in regard to thyroid medication?

  • Isn't it just that the medics are all scared of being reprimanded for giving 'inappropriate' treatment? There are some out there that listen to us, but it's getting harder and harder to find them as everyone is so 'evidence based' and as you say, not taking how the patient feels as evidence.

  • Thanks, Queridalady. I've bookmarked this study.

  • In your situation, I trusted my Endo and did what he asked even though it made me feel increasingly poorly. I ended up feeling very poorly and it took weeks to recover my health. They just don't seem to understand how Ill this makes you feel. If you go ahead I'd just advise you to kick up loads of fuss if you start to feel poorly - while you're still well enough to kick up a fuss. What I don't know is if this works for some people and stimulates TSH. There are advantages to having TSH if you can. It's so unfair that we have to grapple with all these numbers and tests and dose changes :(

  • What are the advantages of having TSH, Aurealis?

  • Well statistically the health risks are lower (sorry I can't give you links - I read and absorb this stuff but don't keep the references). But also, if you have measurable TSH then you potentially have some natural adjustment (assuming you have a thyroid with some functionality) and such natural adjustment means you don't have to keep adjusting the dose with the seasons - and this need for seasonal adjustment drives me nuts!

  • But are those risks specifically risks of low TSH? Or of the various things that could result in low TSH - including, of course, over-medication with thyroid hormones, pituitary dysfunction, etc.

    It is so difficult for even the brightest researchers to fully tease out the impact of TSH. One recent paper identified that high TSH specifically and without regard to thyroid hormone levels increased cholesterol. I am certainly not arguing that there might not be reasons to have some TSH, but I am not aware of any.

  • Well I've managed well enough for the last 20 years without any TSH. There are studies that claim to have shown a link between supressed TSH and ill health risks but they're not necessarily perfectly designed or replicated.

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