I am a 36-year-old man living without a thyroid since 2018 due to a total thyroidectomy for papillary carcinoma. These are my current test results after being on 3 grains of NDT (Thyroid S) for 3 months (2 grains in the morning, 1 at 4 pm). Could you please help me understand them?
TSH: 0.013 (range: 0.5-4.1)
Free T3: 2.21 (range: 1.4-4.2)
Free T4: 1.08 (range: 0.85-1.85)
I feel better on NDT compared to T4-only or T4+T3 combination therapies, but I still have some symptoms. I’ve lost about 4 kg while on NDT, but I was neither overweight before nor underweight now (just normal).
However, I experience unfresh mornings, tiredness mainly after 6-7 pm, sleepiness, a need for 8-9 hours of sleep each day, morning anxiety, occasional low mood (sometimes), and significant hair loss over the last 1.5 months.
Could you advise on what I might do with my dosage? I’m also taking vitamin D and B12.
And one question why my TSH is suppressed if T4 and T3 are still low, why I am loosing weight if I have mainly Hypo symptoms and levels are low?
Thanks in advance!🙂
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Alex_N
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I took dose at 4pm last day before test, test around 9-30 am, 5000 vit D 5 days a week, no B complex. I tested iron and ferritin before they were in range. I am in Armenia.
No thyroid hormone replacement works well until ferritin, folate, B12 and vitamin D are up and maintained at optimal levels :
What were your T3 and T4 bench mark readings before switching to NDT and for a smooth transition - did you slowly build up your dose in 1/4 grains weekly / fortnightly ?
Did you stop at 2 grains for 6-8 weeks - and then run a blood test just to see what was happening ' on the inside '- before building up from 2 grains ?
Did you run pulse, blood pressure and daily temperatures - am and pm daily - have any shown any significant change ?
How long after taking your last dose ( and was that just the 1 grain ) was this blood test taken as your T3 is only around 25% through it's range.
When taking any form of thyroid hormone replacement containing T3 the TSH will likely go low -
Thyroid S contains 9 mcg + 38 mcg T4 - in each grain - so 3 grains = 27mcg T3 + 114 mcg T4 daily :
Once on any form of thyroid hormone replacement you must test, monitor, and dose on the Free T3 and Free T4 readings - and not a TSH -
the TSH is a very unreliable measure of anything when you haven't a thyroid and once on any thyroid hormone replacement.
I checked my ferritin, folate, and iron levels before, and they were within the normal range.
I have not stopped at 2 grains. I gradually increased by 1/4 grain each week until reaching 3 grains.
My pulse, blood pressure, and temperature are mostly normal during the day. My pulse maxes out at 85-90 and the minimum is 65. My temperature ranges between 36.5°C and 37.1°C at times. Occasionally, I feel my heart beating, especially after eating or when I turn to one side while trying to sleep (this is minimal now, though it was more noticeable when I was on combination therapy with 25 mcg of T3).
Before my last test, I took my final dose at 4 p.m. the previous day, and the test was done around 9:30 a.m. the next morning.
Regarding B12 and vitamin D: My B12 level was close to the lower range but still within normal limits without supplements. I am now taking it 2-3 times a week, and I believe my level should now be mid-range or slightly higher. I also started taking 5000 IU of vitamin D, 5 times a week, because my D3 level was low. However, based on my experience, I feel that the issue may still be related to hormones. I am trying to reach an optimal state of well-being. I would say that now I feel about 75-80% of what I was before my thyroid removal, and I hope there is still room for improvement that will enhance my quality of life.
Some ranges are too wide to make sense - so you must aim for a good 50% ++ through ranges - or share these ' normal ' results and ranges and we can advise where you'll likely need to maintain your core strength ferritin, folate, B12 and vitamin D and I 'm sorry to be repeating myself .
How do these results compare to those you took before switching ?
Ideally when taking any form of thyroid hormone replacement containing T3 - NDT - we need a fasting blood test at around 12 hours from last main dose - just to check your T3 isn't going way over range but we have results from 24 hours so show a false low T3/T4 result.
Your temperature is going a bit high - and you shouldn't be feeling your heart beating and sounds as though you might be over medicated ?
Were you dosing AM and PM from the beginning - what decided you to split your dose this unevenly and what symptoms did you experience to stop NDT at 3 grains -
I can't help thinking you've gone a bit too high on the NDT and that your hair loss is down to too low a level of core strength vitamins and minerals.
I am going to switch to Armour Thyroid and see if there is a difference. I will check all these essentials in 2-3 months of being on it and share the results and how I feel. Just FYI, I am measuring my temperature using a thermometer under my tongue. As far as I know, this method can give a slightly higher result.
Do you advise me to stay on 2 grains for 6-8 weeks and check T3, T4? (Since we are ignoring TSH anymore, which I agree with)
With NDT its more about dosing to the relief of symptoms - and not blood tests :
I think the instructions I followed are more for someone switching from T4 only medication - but here goes :-
I read that you slowly increase in 1/4 grains weekly/fortnightly - and IF you get to 2 grains you stay on this dose 6-8 weeks and then run a blood test just to compare to the bench results / readings you took before switching to NDT.
If your T3 has moved and you feel ok and have had some relief of symptoms but not quite ' there ' yet - you carry on increasing by 1/4 grains -
there comes a week where you feel you have gone a bit backwards -
nervous, uncomfortable in your skin, edgey - so then you drop down to the previous weeks dose which didn't upset you - and you stay on that dose - and that's your dose on NDT at that point in time.
I only got to 1 3/4 tablets / grains and started feeling edgey and just uncomfortable in my skin - so I dropped down to 1 + 1/2 grains - stayed on that dose and ran a blood tests 8 weeks later to see what was going on -
My T3 was then 110% and my T4 25% through the ranges - the exact opposite of how my T3/T4 results were on T4 only - as then my T3 was 25% with my T4 at 110% :
I felt fine with most of my symptoms relieved - had energy and no brain fog which was my biggest worry as I thought I was dealing with dementia - and have stayed on 1 + 1/2 grains for the past 6 years and symptoms' I 'd just lived with for years ' continued to improve for about 1 year after settling on this dose.
Brain fog was also my main symptom; fortunately, it is almost gone when I am on NDT. The issue in my case is that when I change the medication or dosage, I am transitioning from one group of symptoms to another. Recently, I added some T3 to the NDT, and I noticed that my hair almost stopped falling and even became thicker. However, in parallel, I started experiencing heartbeats. Now that I have dropped T3, my hair has started to fall significantly again, but I no longer have heart palpitations.
Yes, I had a total thyroidectomy for papillary carcinoma in 2018. Unfortunately, no tests were run before the surgery, so I don't know my levels when I was healthy.
I tried T3 only for several months and felt worse on it. Then I started taking T4 again, and on the first day, I noticed some improvement. Maybe I have a conversion problem, but even when I try to take T4 before bed, I face difficulties sleeping, which to me suggests that my body converts it to T3. I am also taking some thyroid energy supplements containing selenium, zinc, etc., and I've noticed a positive improvement in the symptoms.
Well you have tried all the treatment options so I guess the next step is staying on the one that suits you the best :
Is a thyroid specialist / doctor / endocrinologist having any input and helping you - or are you doing all this yourself ?
If I were you I'd work on the ferritin, folate, B12 and vitamin D as apart from these needing to be maintained at optimal levels for T4 to convert to T3 -
low levels of these vitamins and minerals can simply compound your ill health further.
Yes, I regularly visit an endocrinologist, but in my country, and probably in many other countries, it’s difficult to address issues like conversion problems, reverse T3, NDT, and adding FT3 medication to the treatment. They mainly believe that T4 and checking TSH levels are sufficient. I primarily manage my treatment on my own.
Sure, I will check with them next time. Thanks again for your support and for sharing your knowledge.
Hello I had the same as you but back in 2015. In 2016 I ordered Thyroid s and was very well for years. No increase or decrease in weight.
Your levels are low for FT4 and FT3 mine have to be higher to feel well. You are now on 3 grains which is about average. I used 2.25 to 2.5 grains for years but the Batches change in strength somewhat.
I have been trying to find my right spot again since back in 2022. If you increase perhaps you will lose weight but it could be something else. I just don't know. Which Batch No are you taking now?
Mine is earlier 1004 ending which was purchased in Jan 24.
You sound as though you need an increase 1/4 or 1/2 maybe. I am sorry I don't know about the weight thing. You could be doing lots of exercise that's using up all of your T3 and also losing weight. I hope that you find the answer.
I also take 1.75 at 6.am and the other on at around 1 pm tomorrow I am increasing to three grains, lets see.
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