Is there a source of "Official" confirmation that patients on T3 are expected to have suppressed TSH?

My excellent endo has moved away and my really good GP retired. Am now faced with a GP surgery in a state of panic because of my low TSH level (0.13, range 0.3 - 6.0). I've explained that this is to be expected as the T4/T3 meds I take provide sufficient hormones so there's no need for my thyroid to be stimulated to produce more. I've also pointed out that my TSH has been lower than this for most of the five years I've been taking T3, and that the departed endo, who started me on the T3, was always happy with this.

I need to find something "Official" (ie a source they will trust) which I can print out and show them so that my medication won't be reduced. The endo I've seen recently was no better informed the the GPs, so no help there. The only articles I've managed to find which describe the impact of taking T3 are very negative about it and declare it has no beneficial effect. :(

The fact that I'm quite disabled without the T3 doesn't seem to interest my Docs, so need evidence that their panic is unfounded.

Any suggestions welcome!

26 Replies

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  • You might use this paper which Thyroid UK through Louise Roberts has on file. Here is the title and abstract/summary.

    Biochemical Markers Reflecting Thyroid Function in Athyreotic Patients on Levothyroxine Monotherapy

    M Ito et al. Thyroid. 2017 Feb 06.

    BACKGROUND: Some investigators reported that among athyreotic patients on levothyroxine (LT4) monotherapy following total thyroidectomy, the patients with normal serum thyrotropin (TSH) levels had mildly low serum free triiodothyronine (fT3) levels, whereas the patients with mildly suppressed serum TSH levels had normal serum fT3 levels, and the patients with strongly suppressed serum TSH had elevated serum fT3 levels. The objective of the present study was to clarify which of these three patient groups is closer to their preoperative euthyroid condition.

    METHODS: A total of 133 consecutive euthyroid patients with papillary thyroid carcinoma who underwent a total thyroidectomy were prospectively studied. The patients' serum levels of lipoproteins, sex hormone-binding globulin, and bone metabolic markers measured preoperatively were compared with the levels measured at postoperative LT4 therapy 12 months after the thyroidectomy.

    RESULTS: The postoperative serum sex hormone-binding globulin (p < 0.001) and bone alkaline phosphatase (p < 0.01) levels were significantly increased in the patients with strongly suppressed TSH levels (≤0.03 μIU/mL). The postoperative serum low-density lipoprotein cholesterol levels were significantly increased (p < 0.05), and the serum tartrate-resistant acid phosphatase-5b levels were significantly decreased (p < 0.05) in the patients with normal TSH (0.3 < TSH ≤5 μIU/mL). In the patients with mildly suppressed TSH (0.03 < TSH ≤0.3 μIU/mL) and fT3 levels equivalent to their preoperative levels, all metabolic markers remained equivalent to their preoperative levels.

    CONCLUSIONS: The serum biochemical markers of thyroid function in patients on LT4 following total thyroidectomy suggest that the patients with mildly suppressed TSH levels were closest to euthyroid, whereas those with normal TSH levels were mildly hypothyroid and those with strongly suppressed TSH levels were mildly hyperthyroid. These data may provide novel information on the management of patients following total thyroidectomy for thyroid cancer or benign thyroid disease.

    ncbi.nlm.nih.gov/pubmed/280...

  • Thanks Diogenes. I shall present that to my endo if I get any more nonsense about raising my TSH.

    I've added a link to the study to your reply.

  • Isn't it ridiculous that we have to source evidence that a particular dose/hormones suits us best. They try to fit all of us into a small box, i.e. one size fits all. They don't care if we feel worse.

    I do like the 'old-fashioned' method, treat the patient to relieve all clinical symptoms. A yearly blood test, unless the person develops new symptoms. Stop adjusting doses unnecessarily.

  • Thanks for your quick response, Diogenes. Only thing is, my TSH IS considered to be strongly suppressed, so the conclusion of the article confirms, the very thing that the GPs are panicking about - that they reckon (even tho' my T4 and T3 are in range and I have no hyper symptoms) I'm hyperthyroid. :(

  • An answer lies in the fact you have been on a given level of medication for years. Your body has adapted to this. Maybe early on you might have been a little high (note Ito says only "mildly hyperthyroid"), but over time the body adapts and only through measuring nonthyroid body markers like Ito has done can you be certain whether or not you are overdosed. Going by TSH after all this time is futile and uninformative.

  • By the way according to Ito your TSH is just right at 0.13.

  • Forgive my ignorance, but who/what is lto and where does it say that???

  • Ito (letters eye-tee-oh) is the name of the author of the item quoted by diogenes in the first response.

  • You learn something every day!

  • Ito is the main researcher ,see top left of article .

  • This sentence:

    In the patients with mildly suppressed TSH (0.03 < TSH ≤0.3 μIU/mL) and fT3 levels equivalent to their preoperative levels, all metabolic markers remained equivalent to their preoperative levels.

  • thought I put a thank-you i here earlier, but can't see it, so...thank you!

  • In this sentence:

    In the patients with mildly suppressed TSH (0.03 < TSH ≤0.3 μIU/mL) and fT3 levels equivalent to their preoperative levels, all metabolic markers remained equivalent to their preoperative levels.

  • Morebeans,

    Your TSH is low but it isn't suppressed. TSH can become low on T4 only, not just T3. You might find the Pulse article written by Dr. Toft (ex-president of the BTA) useful on the subject of low TSH Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.roberts@thyroiduk.org.uk if you would like a copy of the Pulse article to show your GP.

    Chances are that if your TSH has been suppressed for years it may not respond to dose reductions as you will have formed a new TSH set point. My TSH has been suppressed <0.01 for 5 years and 3 dose reductions in 2 years didn't budge the TSH up but FT4 and FT3 dropped quite a bit. I refused to agree to a further dose reduction last year and am bracing myself for another argument in May.

  • Thanks for that, Clutter. Will email Louise for the article.

    My TSH actually came up to 0.3 from 0.1 when they took away 20mcg of my T3. This happened because they did an unexpected blood test about 5 hours after I'd taken my dose, and I guess the level of T3 in my blood was peaking as it came out over range. I've been doing well taking my whole day's dose early in the morning, bit I guess if I split it, there'd be less chance of a false high reading. Have you ever seen anything official that explained the best timing for T3 testing? There seem to be a number of different opinions on that, but it's unclear where exactly these different opinions have come from. Also, you'd think it would make quite a difference to the test outcome whether you were taking a multipe doses as opposed to a single one.

    Sorry to hear that you have a continual fight on your hands about your meds. If doctors don't have the time/interest to learm more about this stuff, they could at least learn to respect the knowledge we work hard to acquire ourselves.

  • Morebeans,

    A TSH dose can peak in your blood for up to six hours so you could get a high FT3 level if you had a blood test within that time. It wouldn't affect your TSH though. I would refuse a blood test if I had taken thyroid meds within 8 hours because I'm damned if I'm going to have T3 dose reduced unnecessarily.

    Have a look at the graph in this link which shows how single and multi dosing affect T3 peak levels.

    tiredthyroid.com/blog/2015/...

    I didn't have a fight, I simply refused to consider a further dose increase and said I would self medicate if my prescription was changed. My endos were as useful as chocolate teapots when I was very unwell in 2012 and 2013 and having fixed myself I don't intend to allow them to under medicate me in order to target a TSH level which is immaterial to my wellbeing.

  • Thank you for the link, that's very interesting! Looks like I'd better revert to small doses asap. How do you take yours? The odd thing is that I've felt perfectly okay taking the one dose, and it's been much easier to keep it away from food etc.

    The impromptu blood test showed T3 above range, so that's why it was reduced, but it also drew attention to my low TSH. Although I was told to cut back by 20mcg, this made me feel awful, so I'm using some from my stockpile (best to be prepared!) to put 10mcg back in. Like you, I won't be without T3 now. I'd prefer to be getting it officially, with an endo who knows how it works, but I'll be having it, no matter what. ;)

    Thanks for your input

    Julie

  • Morebeans,

    Even if you took a small dose before your blood test it would peak for several hours.

    No need to change if you like to take T3 in one dose. I used to take it in 2 doses but have been taking it in one dose for a while now.

  • Think your best bet for getting answers to your own question is to start a new post with a heading which explains a bit about what you're asking, so that people can see it. :)

  • Thanks, will do.

  • tell them you also now have central hypothyroid

  • RFU,

    What makes you think Morebeans has central hypothyroidism?

  • it was tongue in cheek suggestion to make the doctors think outside their narrow view of TSH

    but it also does seem that in some patients the smallest dose of levo hits TSH level but not t4 and t3 thus when you have doctors so wedded to TSH is everything you need to bring them to a different view ...

  • Well, surprisingly, but happily, I can report that, after listening to me explain why I was prescribed T3 in the first place, how much difference it has made to my quality of life and why I don't believe my low TSH is a reason for concern, my GP said she had no intention of interfering with something which is obviously beneficial and that she is happy to trust my understanding of my dose/symptoms/test results!!!

    Thanks everyone for your input! :) :) :)

  • Brilliant result. and, best of all, a doctor who listens to the patient's concerns.

  • I think this is worthy of a 'Front Page' post as it is now 4 days old so many may not notice it.

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