i have written a few posts re bad results with levo and struggle with docs. i eventually started thiroyd which sorted me out. however as i am still attending hospital (for nodules)they are not happy with me taking an unlicensed drug and were not going to help me anymore. agreeing that i would try levo and t3 added. as you will see from previous post and posts on here, docs dont give any relevance to T3. i eventually received a copy of the letter my endo sent to my gp and you can all guess what is going to happen from the last paragraph of her letter as follows:-
"We discussed some of the long-term risks of having a suppressed TSH and these would mainly be osteoporosis and atrial fibrillation. I explained to ...........(me).. that atrial fibrillation is a rapid irregular rhythm of the heart which can increase the risk of strokes.
We agreed that she would have a trial of combined therapy with levo and T3. I had suggested a starting dose of 50ug of levo along with 10ug of T3 twice daily and this is really a bit of an educated guess. We may need to adjust these doses when we see her for follow up. i took some bloods today as a baseline. These showed once again that her TSH is low at 00.3 mU/L and ideally we would like to get her TSH up into the measurable range to minimise any long term health risks of over treatment. Her free T4 was sitting towards the lower end of normal at 10 pmol/L and her free T3 was comfortably normal at 4.7 pmol/L.
We will see her back in clinic in 3 months time. I have asked her to have a check of thyroid function with your practice nurse a few days prior to that appointment. I personally do not find measurement of T3 terribly helplful because the results are often influenced by the timing of the blood sample in relation to the last dose of T3 (because T3 has a fairly short duration of action). I am therefore happy with a T4 and T3 and if the TSH is low I would suggest that we should try and reduce her total dose of thyroid hormone a little bit when we next see her"
sorry this post is so long but would appreciate any thoughts or advice. Thanks
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thyroidnodules
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Suggest you give it a go.....see how you get on and get bloods retested via Medichecks in 6-8 weeks
Are your vitamin levels optimal?
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
If/when also on T3, make sure to take last 5mcg dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
I'd be wary of jumping straight onto 20 mcg of T3, even taken as 2 x 10 mcg doses. Previous posters have struggled with this much in one go.
I'm not sure how much levo you are currently taking, but suggest you may feel more comfortable getting to 2 x 10 mcg of lio and 50 mcg on levo over a few weeks - so that you still have 8 weeks on the "end dose" before your next NHS bloods. So perhaps build up to this as 5cmg tablet of lio initially for a week or so, then 5 mcg twice a day etc - combined with more levo that you reduce as you increase the lio. That entails splitting a 20 mcg tablet into 4 which is quite small enough!
I wouldn't be worried with your TSH reading: as you start taking T3, the TSH drops in my experience, as the pituitary senses you are getting the T3 anyway.
yes im not worried about the tsh, its my endo who doesnt want it this low. i am currently taking 2 1/4 grains of thiroyd. do you know how this converts into levo and t3? i just know if my tsh is still low, she will keep reducing. i normally get an appointment for bloods first thing on an empty stomach and i dont take my dose the night before. if you look at her quoted letter she doesnt believe in testing for t3, my t4 is in the lower range and my t3 is also lower to mid range
That bit of her letter doesn't quite make sense but on the face of it she does seem to suggest testing for T3 anyway. She doesn't "find measurement of T3 terribly helpful" but is "therefore happy with [testing] a T4 and T3 and if the TSH is low I would suggest reducing ...".
Is the reference to testing T3 a typo on either her part or yours? It doesn't seem quite right in the context of the sentence, but if it is there in her original letter it could be take to mean she wants T3 testing anyway.
(Though if the above *is* in her original letter, it does look as if she probably intended to say she was "happy with a T4 and TSH and if the TSH is low ...", but perhaps best not to point that out! 😊)
If you're already on NDT, your body is used to T3, so you shouldn't need a very gradual introduction of lio.
As regards conversion rates, SeasideSusie replied to another poster recently: the nearest I can get is that 1grain NDT is said to be approx 38mcg T4 and 9mcg T3. T3 is supposed to be 3-4 times as "potent" as T4,
I don’t think it is said to be I think it is 38mcg T4 and 9mcg T3, unless the bottle states slightly different amounts for one grain. It makes it sound like NDT is not properly formulated. I would argue that it is. They are not directly equivalent to Levothyroxine (we all know how reliable that is - quite dodgy I would say from all the latest posts on the matter) and synthetic T3, it’s an approximation. It might take some tweaking. But I’d say thyroidnodules endo is clueless or is determined to get her right off any type of T3 because her TSH will become suppressed once the free T3 is at the correct level to render her euthyroid. It is disgusting that they were going to withhold treatment because she takes NDT, that is bullying. Pity we can’t withhold their wages for keeping us ill, given all the NI contributions we have made to advance their bloated and ill deserved career progression.
exactly! She was quite condescending as well as when i told her i felt unwell on levo i.e. weight piling on, swollen leg etc., and that when i went on to ndt and lost weight and felt better she said, i probably lost weight because my self medicating was higher than appropriate doses rather than the ndt itself! she also told me the risks of having a low tsh as stated in my post.
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