Two years ago my labs on no thyroid hormone (shown below) came in normal except for low total T3. My endo said that was a useless measurement, and stated emphatically "I would not treat this." I convinced her to let me go on a trial of thyroid meds to see if I benefited from it. I noticed that thyroid hormones gave me energy at first if I took a product with some T3 - especially in the beginning when it was additive to my own hormones - but as I worked up to total replacement, I was feeling tired during the day.
I took a day off from thyroid hormones a week ago to get my TSH up from .18, and noticed I felt better that day than I had in awhile. So I've stayed off thyroid hormones for the past 7 days and still feel great; no fatigue. I'm going to see how it goes.
I notice that my free T3 stays the same whether off or on meds; at 2.9. So that seems to be where my system wants to keep it. I am now thinking that letting my own natural thyroid hormones do the job may be better in my case than replacing it with synthetics.
I've tried all NDT, all levothyroxine, and various combinations of both and no dose had me feeling better for long. Some worked for awhile, but then my body adjusted. And I often had the typical peaks and valleys that these meds cause. Labs before and after, and ranges, are below. I am posting this to get other's opinions. Whatever my normal thyroid function is should return after 6 weeks off meds, so I will get tested then if things go ok and I stay off in the meantime.
TPO antibodies stayed the same at 50 while on or off thyroid hormone.
Before thyroid hormone ........................On 50 mg. levo plus 30 mg Armour NDT
Did you ever take more than 50mcg levo plus 30 mg Armour NDT? Because that’s not what I’d call a full replacement dose. Equates to roughly 69mcg of levo and 4.5mcg of liothyronine. Have you ever been on a dose of thyroid hormone that puts your FT3 at the top of its range? A TSH of over 2 is much too high for someone on thyroid hormone replacement.
And if you have been on a dose high enough to put FT3 at the top of its range, then have you checked out your Vit B12, folate, ferritin and Vit D levels? One or all of those is quite likely to be low and will leave you feeling awful.
I hate to be the harbinger of doom but we often see people who come off their levothyroxine and/or other Thyroid meds and find they feel better - to start with. And then they go downhill fast. There seems to be a sort of honeymoon period where even the most knackered of thyroids has a go at providing its own supply of hormones. And then it gets more knackered and stops.
The ranges were hard to read because this site deleted my spacing and ran the lines together. I just went in and edited this.
My TSH on 50 mg. levo and 30 mg. Armour was consistently .18. Labs were done 26 hours after last dose.
My TSH on nothing - no meds - was 2.2 at its highest. Normally ranges from 1.5 to 2.2.
I did try higher doses of NDT and/or levothyroxine which got my TSH down to .01 or less, but they did not make me feel any better. Higher doses with more T3 sometimes gave me heart fibrillations and anxiety, so I had to watch this carefully.
My conclusion is that normal production of thyroid hormone may produce higher caliber hormone in the body than the pills. I have learned blood labs are of some value but it's more accurate to go by how I feel.
Higher doses with more T3 sometimes gave me heart fibrillations and anxiety, so I had to watch this carefully.
It may not have been the T3 itself that did that. It might be that you have a degree of adrenal insufficiency or alternatively, low iron/ferritin levels can cause folk to feel jittery on T3.
If you’re feeling better without though, maybe keep going. It’s certainly possible that you had thyroiditis at the time of that original test. Do you know if you have thyroid antibodies? If so, it may well be that eventually you will need to start taking hormone replacement again.
Thyroid antibodies stayed at 50 both before and while on thyroid hormones (for two years.) So essentially unchanged. If these go up, I will probably need to get back on thyroid hormones at some point.
Also, ferritin, Vitamin D and all other vitamin levels are all good, at or above mid-ranges. I take a lot of vitamins and have these checked. Cortisol is good also.
I could tell fibrillations I had were tied to higher doses as they would happen anywhere from one to three hours after taking the meds and then go away. However, I think this happens to many people temporarily as they increase their dose - particularly of NDT or T3 - and then often stops happening as the body adjusts and produces less of its own supply.
So since I was tired on my dose -- which seemed to work the best of any I tried -- despite it bringing my TSH down to .18, I think I will try staying off and see if I continue to feel good.
If I start to feel that tired "low thyroid" feeling and stay that way, I can always go back on and then tinker with raising the dose higher than what I was on if I need it.
Well I lasted two weeks totally off thyroid hormone and noticed I got a bit tired after the first week, and really tired around day 12. So I have taken 50 mg. levothyroxine yesterday and today and notice it brought back my energy. I will stay on this and see if it keeps working or if I need to go up again.
50 mg. in the past (initial dose in 2016) brought my TSH down to 1.15 from 2.21, and my total T3 up to 86 from 62, so I will see how it goes.
If nothing else, I figure this experiment did a "system reset" on my thyroid, so medication may work better for awhile.
The ranges are hard to read because this site deleted my spacing and ran the lines together.
This happens to lots of people at one time or another, particularly if results are copied from elsewhere and then pasted into a post.
The best thing to do when your data gets screwed up is to post it, then edit your post. To do this you have to click on "More v" under your post, then click on Edit, then make your changes then click on "Post".
Thanks! I was looking for an "edit" key to try this so glad you pointed it out. It wouldn't work with spaces so I added something to separate the categories. The range is in the center.
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