It's taken afew months, as the drs surgery lost the first reply, but at last I have a response from the Endo. Quick recap - Partial TD in Oct 12. Felt hideous ever since. Dr would only prescribe 50/75mcg t4 even though I could barely function but my tsh was in range (3-4ish) so go away and loose some weight. I've been selfmeding for about 6months on 2grains of thyroid S. Told Dr in December and was surprise at her response. She was delighted I felt better, was happy to monitor me, would order some more labs, consult the Endo and decisions about my health were ultimately in my own hands. Result!
Labs came back:-
T4 10.9 (11-22)
T3 5 (3.9-6.8)
TSH <0.01
Suppressed tsh scared her but not me. I had to explain the results to her! she decided to drop the Endo an email. I'd love to know your opinions.
(Edited version)
'The difficulty with NDT is you can't be sure what's in the product. Therefore monitoring has to be based on tsh, to get within normal range. Doseage is difficult to advise as it's not possible to know what's in the NDT. Measuring t3 is unlikely to be helpful. You can't prescribe NDT, patients buy it over the internet. You should encourage the patient to reduce her dose.
The patient may decide to continue her regime. She should be warned of risks of suppressed tsh. Increased risk in the long run of atrial fibrillation, potential risk in long run of osteoporosis and premature mortality'.
I feel fab but would love your comments.
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GotTheTShirt
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Verrry interesting. You wouldn't think the TSH would be so low given the fT4 and fT3. Just goes to show there's more going on under heaven and earth (so to speak). If you want to prove your point, then have a 24 hour Holter monitor ordered up. If you have zero atrial fibs, then they can all go you know where. Put them and their educated opinions to the test. Same with the osteoporosis business. Get a baseline bone density test done. Repeat every two years.
GottheTShirt, I expect to see suppressed TSH and low or suppressed FT4 on NDT. Your FT3 is less than halfway through range but if you feel well there's no reason to tweak your dose.
You can be very sure of what's in Armour, NatureThroid, WP and NP because they are all listed in the US National Formulary and Erfa is listed in the Canadian NF.,but possibly not Thyroid-S. NDT (probably not Thyroid-S) can be prescribed on a named patient basis (local CCG permitting) and because NDT contains T3 I think it is essential to measure FT3 to check it remains within range and TSH is always likely to be suppressed because of the T3.
Suppressed TSH in hyperthyroid patients increases the risks of AF and osteoporosis but surely elevated FT4 and FT3 must contribute to that risk? That research has been extrapolated to medication induced suppressed TSH in hypothyroid patients who usually have FT4 and FT3 within range and the extropolated research usually says suppressed TSH may increase the risk... and follows up saying more research is needed!
My TSH is suppressed to reduce the risk of cancer recurrence. I bear in mind it may increase my risks of AF and OP, which are lesser risks to my mind. If I had to decide between suppressed TSH to feel well today and possible adverse outcomes in the future I'd still suppress TSH.
DEXA scan shows I have mild osteopenia. I suspect this is more to do with tall thin frame, low BMI, very early menopause and severe vitD deficiency in 2013 than 2 years of suppressed TSH.
That's why I suggested the Holter monitor and a bone density test, just so, since there appears to be concern on the part of the endo, get base line data. Otherwise it's just speculation. The fT4 and fT3 levels are no where near 'concern' levels but just to keep everyone happy, it's good to disprove their concerns. I don't appreciate hyperbolic 'threats' and 'fear mongering' on the part of the endos. Mine does it too. It leaves people second guessing themselves with no proof one way or the other. If someone opens their pie hole and says something which is potentially of concern, check it out and lay it to rest.
Gabkad, while I agree a Dexa or ECG could rule out AF or OP now, it doesn't remove the potential risk of future problems due to low TSH. It should be the patients decision whether or not to take the risk though.
I agree with you Clutter. It's the annoying mind games endos play that need to be shut down. An ECG wouldn't be sufficient to detect the occasional atrial fib though.
I believe that endos should be put to the task. If they claim something, let's get proof. Otherwise they should shut their gobs and stop alarming women.
My surgery seem quite frugal , they've changed one medication from the brand I have taken for 25 yrs to a generic one, so I don't hold out much hope for a Holter and bone density test but agree that these would provide useful info. I shall ask and cross my fingers.
I've had a low or even suppressed TSH for as long as I remember but no hyper signs. My last GP was convinced my bones were close to crumbling it not already dust! I'd volunteered for a bone mineral test for research purposes when I had an ankle fracture and osteopenia in keeping with my age was pronounced but no treatment suggested as classed as expected. Endo did a VIT D test and pretty low at 25 so a booster dose followed by a maintenance dose of 800 IU per day. A year on and no sign of osteopenia! It's made me wonder whether this blaming of low TSH is unwarranted and it's been lack of vitamin D all along.
I would agree that if you are careful and they will provide the monitoring then carry on. You can't spend your life not being able to function today because of something that may or may not happen in the future. Who knows what goodies life has got stored up for then
It stands to reason that if you have adequate T3 from sources other than your own thyroid gland then TSH will be suppressed, because you don't need any more. What surprises me is the number of people who feel OK with their TSH around 1. The pituitary is calling for more T hormones which the thyroid cannot make, so how come all is hunky dory??
Unfortunately nature never seems to settle for using a hormone for just one purpose, so its likely that TSH has other effects. However, like everyone else I am sceptical of the current research into the link between suppressed TSH and these diseases because they aren't artificially suppressing the TSH while leaving T hormones at normal levels. As a result they could just as easily head their papers 'Elevated T3 causes......' In any case there are increasing numbers of papers showing the benefits of higher(but not unhealthily high) T hormones so as ever its a balancing act.
Personally I would rather not die young. However if the trade off is several years feeling well, then I settle for that. To be honest, if I hadn't found NDT 15 years ago I would have topped myself by now anyway, so that's not exactly a great benefit from an unsuppressed TSH!
And don't worry too much about Thyroid S. I have been taking it for 15 years, no problems with consistency at all. It would appear that the Thai manufacture know how to make the stuff, and they don't waste their time fiddling with a formula that works. In comparison, over that time, there have been numerous problems reported with Armour, Erfa etc.
Pure ignorance and bigotry, my dear. Endos Don't want us to think out of the box - might put them out of a job! He doesn't know what he's talking about so ignore him. If you feel well on that dose, whatever you do, Don't lower it!
As Diogenes put it in a recent post ,the choice as endos see it seems to be osteoporosis / atrial fibrillation or sub optimal treatment. Endos opt for the latter. I told the endo that at my age I would take the risk of going up from 125mcg but no deal.
Natural Dessicated Thyroid Hormones have been in use for over 100 years without being recalled. I think a couple of times there was a problem was with a reformulation. Levothyroxine has been recalled umpteen times and is a synthetic form of thyroxine and is therefore less synergystic with the human body. NDT contains all of the hormones we need for a disfunctioning thyroid gland. Oh, to go back to the days when doctors medicated with NDT according to symptoms alone, plus family and your own medical history and gave sufficient until the patient was 'well' without symptoms.
Big Pharma has done such a job pushing their products by giving monetary rewards for prescribing their products.
Dr. Lowe: First I suggest that you ask your doctor to question the scientific basis of the endocrinologists’ notion of "fine tuning" by TSH and thyroid hormone levels. If he does, he’ll learn that the changes he sees in your TSH and thyroid hormone levels are probably nothing more than natural variations in the levels. He would probably see the same variations if he always kept your thyroid hormone dose the same. I’ll briefly review some of the evidence that your doctor should read.
TSH levels don’t significantly correlate day-to-day[1] or week-to-week.[2] One research group measured the TSH and free T3 and free T4 levels of ten normal young men.[3] When they measured the levels every 30 minutes for 24 hours, they found that the hormone levels were lower during the day and higher at night. During the day, the free T3 was 15% lower, the free T4 was 7% lower, and the TSH was 140% lower. When the researchers measured the hormone levels every five minutes for six to seven hours (7 PM-to-11 PM), the levels varied every thirty minutes. The TSH level varied 13%, the free T3 15%, and the free T4 11%. and
Many endocrinologists talk of using the TSH and thyroid hormone levels to "fine tune" hypothyroid patients’ thyroid hormone dosages. Considering how much the hormone levels vary, however, it’s obvious that the concept of fine tuning is mistaken. For the sake of their patients’ health, endocrinologists should promptly abandon the notion. This is unlikely, though, due to financial inducements the endocrinology specialty receives from corporations that profit from doctors endlessly ordering the hormone levels to "fine tune" their patients dosages. Hopefully, though, you can use the scientific evidence to persuade your doctor to use a safer and more effective approach with you. More on this topic
My instinctive reaction was "what a load of ^%&^*(&!" Someone definitely drank the NICE kool aid. NDT products such as Erfa and Armour are closely regulated (fewer recalls than levo, for example). TSH is meaningless when taking a products containing T3 - only T3 is really important. Writer needs to go back to college and do that module again.
My blood results re bone health actually improved on a suppressed TSH and shed load of thyroid meds. In fact the endo withheld my results because I proved him wrong. I had to get them via my GP and there was a significant improvement!
I'm happy for the dr to test what she wants but as I'm feeling better I'm back to being stubborn so NDT for me from now on. I really can't understand how a 'specialist' cares more for a blood test result than how their patient actually feels.
Thyroid-S is NDT from Thailand. Easily available over the internet.
I think the endo's concern was exactly what you are saying, what % of the product is t3 and t4 and fillers, etc and how does it compare to other brands. Not sure if anyone can answer this one?
I had doubts about buying Thyroid-S because of the source but was finding other products difficult to get hold of. I read many forum reviews before taking the decision to try ndt and it works great for me. No regrets.
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HELP PLEASE. I need good reasons on why my Endo should not pull the plug on my T3 treatment. 
GP/Endo rant - help on TSH
