Hi I've been self medicating with Thyroid S for 3 months or so - raising by one tablet each month till I felt OK on 3.
My latest blood test shows that my T4 is 12 (range 9. -22 but T3 is 5.5 with the top of the range being 4.7. My endo freaked and told me to stop taking everything immediately.
My first thyroid test showed that my T4 was under the range but TSH was normal so no one was willing to prescribe anything. That's why I took matters into my own hands.
My brain wasn't working !!
Any advice greatly appreciated.
Adrienne
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adrienne1972
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Do you know what the actual levels were that were pronounced 'normal'?
For a long time I self medicated without T3 testing, and when they did finally test me the levels were around 8 with similar ranges to yours. I felt pretty good! But I have since lowered my dose to bring my T3 down to around the top of the range. I don't feel quite as good, but I do have osteoporosis, which was diagnosed before my hypo started, so I feel kind of cautious about going too high.
Only you can decide where you feel OK, and whether it's worth the risk. If it makes you feel better than before then some sort of compromise might be the answer.
Thanks for your reply Ruthi. my T4 wasn't normal in the first place but my TSH was. So because that was massively unusual I think no one knew what do do.
I think I will mYbe drop down to 1 tablet and see if the brain fog sets in again !
What I was getting at was that so-called normal is no way optimal!
For most people optimal free Ts are at the top of the range, and TSH is around 1. Achieving that once you are on replacement medication is difficult, especially with medications containing T3. My priority is to keep my T3 at the top of the range, but it means TSH is suppressed.
My TSH was around 1.5 to begin with, now it is under 0.3. But T4 was around 6 to start with. I was told it was a piturity problem rather than a thyroid problem by a private endo who referred me back to the NHS. I Probably need to pay 500 pound for an expert but can't paticularly afford it. I've already paid 500 to a trichologist (hair loss expert) who ordered a thyroid test in the first place.
Have you thought of dropping down to 2 or 2 and a half a day? Dropping to 1 a day seems rather drastic. Most people taking NDT end up on 2 to 2 and a half grains a day.
Your blood tests are fine on Thyroid S. When we take NDT, the blood tests cannot correlate to being on T4 only (they were introduced along with levo). First because the T3 in NDT will reduce your T4 (you're taking less) and because it contains T3 it will be higher - it stands to reason i.e. if on T4 only you aren't adding T3. On NDT it contains T4, T3, T2, T1 and a small calcitonin.
The most important question is how you are 'feeling' on ThyroidS as we would on any NDT.
"I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions"
Just found this answer from 2 months ago, it's exactly what I was searching for as I have a follow up appt with my Endo on Monday next week and my bood test results received today have got an exclamation mark beside the FT3 level result of 7.6 (ref. range 3.90-6.70). I wonder what is my Endo going to say? I am on 2 grains Erfa and I feel very well.
I thought that by taking NDT, the FT3 levels would be higher.
I am grateful for the info in your answer about T3 levels whilst on NDT.
You can tell your Endo that as NDT was first introduced in 1892 there were never any blood tests at all. Patients were given a trial of NDT, according to their symptoms alone, when levo was introduced in the late 50's (I believe) along with blood tests, they were only for the use of levothyroxine. This procedure was used safely for over 100 years before levo and tests.
Dr. Lowe: With most patients, I use thyroid function tests (TSH, free T3, and free T4) and thyroid antibodies only for a patient’s initial diagnosis. Afterward, I follow the practice, in principal, of Dr. Broda Barnes—that is, measuring tissue effects of particular dosages of thyroid hormone rather than remeasuring TSH, free T3, and free T4 levels.
My reason for this different protocol is simple: the TSH, free T3, and free T4 tell us only how the pituitary and thyroid glands are interacting. Of course, the test levels may also tell us something of the influence of thyroid hormone over the hypothalamus in its secretion of TRH, another hormone that influences the pituitary gland's secretion of TSH. From Dr L:
"With patients who come in for comprehensive metabolic evaluations, I use these same physiological measures. But I also use indirect calorimetry to measure the patient's metabolic rate at rest, and I use bioelectrical impedance to learn the fat content, lean mass, and water content of his or her body. I also use a variety of biochemical measures, a history, the patient's current health status, and a physical exam. I use these to differentially diagnosis the most likely cause if the patient’s metabolic rate is abnormally low or high.
The physiological measures enable me to determine a patient's metabolic status. If it's low, the measures help me to determine the likely cause, such as too little thyroid hormone regulation. If the patient is using thyroid hormone, the testing also enables me to specific how the dosage is impacting the patient's tissues. Unfortunately, the most widely used tests, the TSH, free T3, and the free T4, simply can't give us any meaningful information about that most important question that Dr. Barnes long ago asked—how is a particular thyroid hormone product and dosage affecting the patient's tissues? I hope this answers your question adequately. All best wishes".
Unless you are suffering from extremely high blood pressure and/or a very fast heart rate and/or a higher than normal basal temperature and/or sweating constantly and profusely, I can't see that dropping your dose is that dramatically urgent. Your endo telling you to stop all thyroid meds immediately is insane and would make you very ill. It could take weeks before your own thyroid, pituitary and hypothalamus fully kicked in again and you would develop lots of hypo symptoms.
I also think dropping from 3 tablets down to 1 is far too big a jump. I would drop it down slowly (1/2 tablet at a time), monitoring your pulse, blood pressure and basal temperature as you do so, and drop down no faster than every couple of weeks.
If you were having overdose symptoms it would be different. In that case I would have suggested stopping for 2 or 3 days or until the overdose symptoms had stopped, then re-start with a dose 1/2 a tablet lower than what you were taking before.
I also think the top of the reference range that you quote is absurdly low.
The above is all my opinion, and I'm not medically trained.
Adrienne1972, if you took NDT before your blood test FT3 will be elevated. If you left 24 hours between last dose and blood draw you are mildly overmedicated. 1/2 to 3/4 of a grain dose reduction should be ample for FT3 to drop into range.
I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
when did you take your blood test> and meds? also did you test your b12, d3 , because many times low in these two can make you feel terrible or even if you have low ferritin serum.....that all can cause similar feelings of being low in thyroid but it is the deficiencies and if you don't correct them, you still feel bad on thyroid meds....
Thanks everyone !! . I will try dropping to two and monitor everything and get a private blood test in a month or so without medication on that day. I had taken NDT before testing as I wanted a true reading.
I'm on my own now as the hospital has discharged me and warned I will have a stoke soon. My blood pressure was 'low' before and now it normal 75/ 120. My periods have also returned after 2 years, joint pain that used to wake me up has gone.
My ferritin is absurdly low 30 ish and hasn't changed in a year despite taking strong 6 strong iron tablets everyday so I'm about to go on a radical anti -yeast diet too.
thanks for all your reassurance. It's crazy out there ! Xx
Did you leave 24 hours between your last ndt dose and your blood test, because you should. Also fast with water only and get the test done early I the am.. Take tour meds after the blood test.
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