Hi - I've been diagnosed wth Hashi for bout 10 years- the first two years I was on synthroid- felt crappy and then took NDT which worked well up until January 2016. Then my thyroid went hypo (high TSH) and four weeks later it went to below range and it's never come back- doctors prefer me at low end of range for TSH- I recently developed more autoimmune conditions and so my doctor wanted me on t4 only medication - otherwise I may not be treated- and after 3 months I'm still below range TSH- my dose was dropped from 175 ug synthroid to 150 ug synthroid now they want to drop my to 125 ug synthroid (the endo said I basically have a dried out husk of a thyroid after my last thyroid scan)... anyways here's my last two readings- I don't want to go any lower as my joints hurt, I'm exhausted and I can't keep on this dose.. but not having any TSH readings should I be concerned? Felt great April 23 - what should I do? Should I be concerned? The march 1 reading is on 120 mg of NDT and I felt like crap on that dose.. but because my TSH was to low the ND would not raise it... any ideas? Is my TSH suppressed due to other issues? As I believe I'm hypo...
Doctors know nothing about thyroid. They especially know nothing about hypo treated with NDT.
Once you are on any form of thyroid hormone replacement, the TSH is irrelevant. It doesn't matter how low it goes. It goes low on NDT because you don't need it. You are taking T3, the pituitary no-longer needs to stimulate the thyroid.
Doctors like you to take T4 only, because that's what the blood tests were designed to test. And, when you add T3, they no-longer understand the results. When you're taking T3, the only important number is the FT3 - not the TSH, not the FT4 - the FT3. And, they just can't get their heads around that.
So, with your FT3 in May, you are under-medicated. You need an increase in NDT, no matter what your doctors say. So, if you're paying for your own NDT, why bother to even ask them their opinion? Just do your own thing.
They should not be dosing using TSH. They should use symptoms followed by freeT4 and free T4. My TSH has been suppressed for years. If your thyroid is a 'dried out husk' what do they think is happening? You're producing more hormone which is suppressing your TSH? I don't think so. Read all the posts relating to this on this forum as well as some of mine and my replies on this subject. Don't let them reduce your dosage and become more hypothyroid.
I was told years ago that my TSH will never recover after prolonged use of NDT. In the days when NDT use was common most endos knew this.
Interpreting your results rather depends on the timing of your tests. The serum half life of T3 is only ten hours, so the timing of your test significantly affects the results. The ideal is that you are tested 12 hours after your last dose.
Considering NDT was the very original thyroid hormone replacement for world-wide use until Big Pharma came along and thought 'wouldn't it be good if we could have a share of the pot of hypothyroidism'. So they had sufficient money to publicise this 'perfect' replacement which was promoted as more reliable etc than NDT and paid doctors/endocrinologists to spread the good news. I'd go back to your April dose.
Eventually, Endocrinology/doctors believed the publicity and it may work well for some people but others do need to take NDT or T3 only. When we take NDT it is all about how the patient 'feels' on a particular dose - not on blood tests which, of course, can be used as a guide.
In the late 50's/early 60's the promotions and monetary rewards were given if patients got levo instead of NDT. T4 being synthetic did not agree with many who found NDT best and even today many prefer NDT.
Doctors cannot use the same blood tests for NDT which contains, T4, T3, T2, T1 and calcitonin so how on earth could they be identical.
Dr Lowe wrote a Rebuttal to the BTA and RCoP and despite three yearly reminders to them before his death neither had the courtesy to respond. If we ignore scientific evidence - we will never expand our knowledge. So they keep to the same Mantra levo alone is 'perfect' - maybe for some but not for all and many suffer with levothyroxine and aren't given a option.
Doctors who reduce doses to keep any of the 'results' within a range don't appear to listen to their patients and attempt to relieve their symptoms. All of us on this forum will most probably have different doses to relieve symptoms. The doctors think one size fit all - they are so wrong. This is an excerpt from Dr Lowe:-
I soon learned that most doctors tenaciously held two beliefs that had been shrewdly planted in their minds by the corporation that marketed Synthroid. The beliefs were: (1) the potency of Synthroid tablets was perfectly reliable, and (2) the potency of the tablets or capsules of other products—especially Armour Thyroid—was highly unreliable.
Based on these two beliefs, the doctors dogmatically pronounced that all hypothyroid patients should be treated with Synthroid. The doctors’ pronouncement was thoughtless parroting of a sound bite from the corporation’s marketing campaign—a campaign so effective that Synthroid eventually became the third most-prescribed drug in the U.S.
In my view, the doctors who parroted the Synthroid marketing hype should feel shame; they allowed themselves to be duped by a sales campaign for a product that was—and still is!—no more reliable than any other thyroid hormone product. In previous publications, I have cited the FDA evidence for Synthroid’s lack of reliability.
What your doctor did was ignorant and shameful. With a TSH of .07, .02, then 1.0 mU/l there was never any reason to mess with a dose which made you feel OK. For what it is worth my TSH has been .002 for thirteen years - actually it used to be "not measurable" until the resolution of the equipment improved!
OK, their argument is that it will cause osteoporosis, then drink more milk, make sure your Vit. D is optimal, take Vit. K2 and keep on NDT because it has calcitonin in it which makes sure the Calcium in the milk goes into your bones and not line the walls of your arteries.
Their other argument is that it will do something to your heart. If you overdose, yes it will because it sends your Blood Pressure (BP) up, so don't overdose, keep measuring your BP as you fiddle with your dose. HOWEVER... dragging around under medicated for months or even years will also tax your heart. Invest in blood tests while you get yourself to the right dose, or revert to the dose on which you felt well, then stick to it until something changes - but don't take any notice of your docs well meaning but ignorance of thyroid maintenance.
Thankyou- I said no way and was kept on 150 ugh of T4 so that is good. I find it strange that doctors/endows want TSH at 1 mine definitely won't go there - I'd have suboptimal FT3 and FT4. I'm thinking of going back onNDT - I wish more research would be done on this issue- and that would educate the medical people...there's no way with my levels that I'm overmedicated and yes I'm on D/k , bit c, Hydroxy B12, multiB , magnesium and a few others...
Thankyou everyone- since 2015 I've been underdosed on NDT and now on synthroid- I'm going to work with a new ND to get it balanced. I hate that they see TSH as the be all.. thankyou for advice..
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methinks it's time to add some T3......thoughts ?
