I’ve been on T3 only for over 10 years. For a long time, my prescribed dose has been 60mc a day, though I have occasionally dropped this for a wee while to 50 or 40mc when I’ve felt like I might be a bit over-medicated. For me this generally shows up as feeling hot and sweaty and having a bit of a fast or irregular pulse. Over the last couple of months, while on the full 60mc dose, I’ve felt chilly, struggled with climbing stairs and kept falling asleep in the evening – my usual symptoms when under-medicated.
I had a private blood test done and my results were:
TSH 0.01 (0.27-4.2 mIU/L)
FREE T4 0.5 (12-22 pmol/L)
FREE T3 11.7 (3.1-6.8 pmol/L)
This really confused me as, obviously, my T3 is far too high. I cut my dose - had one day on 20mcg and have taken 40mcg for the last 5 days. Weirdly, on this lower dose, I now have what I would consider to be over-medicated symptoms. I’m hot and sweaty and am sleeping less than half the night. I am also getting fluid retention in my legs and hands. My legs haven’t been like this for ages and my hands never did this before.
I have no clue what is going on – does anyone have any idea/s/suggestions? Also, do we definitely need to keep our T3 lab results within ‘normal’ range, rather than dosing according to symptoms?
Thank you
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I did the test at 10am, having had 20mc of T3 at 6pm , then 40mc at 9pm, the night before. These are my usual times to take it.
Haven't had vitD, B12 and ferritin tested for a while, but I would expect the first 2 to be okay as I take 4,000iu of vitD3 and 1,000mcg of sub-lingual methylcobalamin a day. I also take: omega3; lutein; selenium; vitE; vit K2; glucosamine; vitC; B-complex; zinc.
I have a good diet and haven't been anaemic since my periods stopped.
I am 65 and well past menopause. I had covid about 6 months ago, but wasn't really ill with it.
Do you think I should keep my dose at the 40mc I'm taking now, or take it to 50mc, so it's a sixth less than my original 60mc dose rather than a third less, which seems like a big reduction?
I have Roma 20mcg capsules, and a few 10mcg. PIL says they can be opened up an diluted in water, if you have trouble swallowing, so I guess it would be possible to split them, so long as I'm at home when I need to take them. I guess it's more straightforward and sustainable to try things at 50mcg and, if that seems better, ask for a prescription for more 10mcg capsules. As I explained below, when tested while taking 40mcg, the results were close to the top of the 'normal' range so, even on 50mcg, I will likely be considered to be medically over-medicated.
Do I prioritize alleviating my symptoms, or achieving a test result which my GP would find acceptable? This seems crazy!
I have no clue what is going on – does anyone have any idea/s/suggestions?
First thought that comes to mind is: do you have Hashi's? If you do, that could explain the sudden increase if the FT3.
Also, do we definitely need to keep our T3 lab results within ‘normal’ range, rather than dosing according to symptoms?
My opinion is: no, we don't. The range is only a rough guide to what is seen in the general population. But, one assumes that that general population does not have hypothyroidism, and therefore is only vaguely relevant.
And, apart from that, a blood test only tests what is in the blood. It cannot tell you how much has got into the cells. And in the blood, it doesn't do anything. So, there is also the possibility that for some reason or other, you have stopped absorbing as much into the cells as you used to, so there's more left in the blood. Do you consume much unfermented soy?
But this article will explain about ranges much better than I can:
yes, I do have Hashi's, and I did wonder if my high T3 result might be related to this, but it wouldn't explain why I was feeling under-medicated at that level, but over-medicated once my dose was reduced by a third. I thought I'd got as handle on how to judge when I should adjust my dose, but this definitely suggests otherwise.
I don't have unfermented soy.
I haven't seen the endocrinologist who's supposed to be supervising my treatment since before Covid. He agreed to continue my T3 only regime, after my previous, wonderful, endo left, but he isn't particularly interested in understanding how it works and couldn't even tell me the best time of day to take it. My GP runs thyroid tests on me periodically, but I always reduce my medication for a few days beforehand. They're freaked out enough by my almost non-existent TSH without having to accept a T3 level anything above range. I worry that when they run tests for anything else that comes up for me, unexpectedly, they might do thyroid ones at the same time and then everything would 'hit the fan'. I try to just stay under their radar, as it would be too easy for them to just stop my prescription, because they don't know anything at about T3 treatment.
Thank you for the link. It's very interesting and I've read some of the things linked from it, too. The Canadian article is particularly good, and accessible, and it mentions 'organ system manifestations of hypothyroidism', which I've no awareness of at all. I need to investigate this as I have various other conditions which I've never considered could be related, but perhaps I'm wrong.
I guess I worry that i might be doing myself damage by dosing at a level which keeps me above 'normal'. I get my bone density checked every couple of years and it seems fine, but I'm not sure what else I should be concerned about. I certainly feel worse, at the moment, on the lower dose of 40mc, although that would give an 'acceptable' result in a test.
One of the problems with thyroid issues is that hypo and 'hyper' (over-medicated) symptoms can be the same. It's difficult to judge which is what, which is why we do blood tests to back up how we feel.
So, what was your last FT3 level on 60 mcg T3? Which is a reasonable dose for someone on T3 mono-thereapy. I find it difficult to believe that your dose can suddenly become too high and send your FT3 sky-rocketing like that. Far more likely to be due to a Hashi's 'hyper' swing.
And I'm pretty sure that if you were doing yourself any damage by over-medicating - which I doubt you are - you would have felt it by now.
I really don't think ranges apply when taking just T3.
I've never had my T3 tested when taking my full 60mc dose. This recent test was done privately, so I could find out what my true level is on the full dose. At other times, when I've reduced to 40mc before a test at the doc, the results have shown me near the top of range, so I may well always be well over 'normal' when taking 60mc. The difference, which caused me to test, was that rather than feeling okay on the 60mc, which I normally do, I was so chilly, weak and sleepy.
Could your change in symptoms be down to some sort of infection?
Reducing by 20 mcg was rather drastic, and probably a huge shock to your body. So, that rather clouds things in the symptom department. So, maybe try taking it up a little? Say to 50 mcg? How long have you been on 40 mcg?
I cut my dose down 6 or 7 days ago and very quickly went from chilly and fatigued to hot and sweaty and fatigued. I know, in theory, over and under medicated symptoms can be the same, but I've never felt cold on 60mcg before, and likewise wouldn't expect to be overheated on a reduced dose. It's VERY confusing!
You're right though - proportionally, 40mcg was quite a big change. I'm on 20mcg capsules, so can't half them, but have a small number of 10mcg ones which would let me try taking 50mcg to see how that goes.
I've been, otherwise, reasonably well, over the couple of months I've felt cold, so don't think an infection is likely. I do, however have some other health issues: Ehlers Danlos Syndrome; fibromyalgia; Temperomandibular Joint Dysfunction; previous, currently settled Trigeminal Neuralgia; arthritis in my neck which appears to be compressing nerves and causing weird symptoms in other parts of my body (eg chest pain, vertigo). I guess I need to try to figure out whether these are somehow affecting me in unexpected ways.
As I wrote to Slow dragon above, 'Haven't had vitD, B12 and ferritin tested for a while, but I would expect the first 2 to be okay as I take 4,000iu of vitD3 and 1,000mcg of sub-lingual methylcobalamin a day. I also take: omega3; lutein; selenium; vitE; vit K2; glucosamine; vitC; B-complex; zinc.
I have a good diet and haven't been anaemic since my periods stopped.'
I could ask at my GP surgery to have my ferritin checked, but I'd need to be sure my T3 was in range when I went for this as I'm overdue for thyroid tests there and they'd want to do that, too.
The kind of vertigo I get is quite different from the sense of imbalance I had when my B12 was low. I am pretty certain the vertigo I get now is caused by nerve constriction in my neck - one wrong turn of my head can impact me for months. This is something that happens more frequently in Ehlers-Danlos people than in the general population. My head is unstable on my neck and I know from x-rays that I have bony growths, and narrowing, in my cervical spine and loss of normal lordosis.
Sorry, I feel like I'm knocking down some of your suggestions, but I really do appreciate your help with this.
Do you also take magnesium? Vit D and magnesium work together and most people are deficient in magnesium, anyway. So if you don't take it, you need to.
You could get ferritin tested privately. I'm surprised you didn't get your nutrients done when you did the above private test. Some of your symptoms do sound like they could be due to low ferritin. It's not necessary to be anemic to have a ferritin level that is too low. And it has little to do with your diet. You could have the best diet in the world and still be deficient in some nutrients due to low stomach acid, which most hypos have. You're not what you eat, you're what you absorb!
Don't apologise, just going through the check list.
I did the test with thyroid, magnesium and cortisol. Magnesium was top of the range: 1.0 (0.7-1.0mmol/L. I wanted to check this as I had to stop supplementing when it seemed to exacerbate the gut issues I have.
Not sure how valuable a one-off cortisol blood test is, but it was 490 (166-507 for 10am test)
Don't currently have the money to test for ferritin, but I'll see if I can get it checked at my GP surgery in the near future.
I learned a bit about stomach acid after I was prescribed omeprazole for years on end. This stopped when I made them do a helicobacter pylori test, which was positive. It took 3 triple treatments over the space of 12 months to get rid of that. I have refused omeprazole since and have now only occasional episodes of acid reflux. Think I do have absorbtion issues as, despite my good diet, I had neurological symptoms from absolute bottom of range B12 levels which were resolved by taking 5,000mcg of sublingual B12 for about 10 months. This was before doctors were told to treat the symptoms of B12, rather than going by test results (I wonder if they actually do that now.......). I now take 1,000mcg, to keep my level up.
Well, there's no point in testing magnesium. The results are unreliable due to the way the body handles magnesium. You can have a top of the range result and still be deficient. And most people are deficient in magnesium because soils are depleted and they're not getting much in their food anymore. Which magnesium were you taking?
Your cortisol looks good.
Do you take a B complex with your B12? The Bs all work together and need to be kept balanced.
I didn't know magnesium can't usefully be tested. I was taking magnesium citrate in the hope it would help me sleep. Didn't notice any benefit, so stopped because of my gut issues.
I do take a b complex with 100% of the NRV of them all. I used to take high dose ones, but thought it was maybe overkill, especially as too much of some of them can cause problems.
I could try some magnesium again and see how I get on. Which form do you think is best?
Some people who take magnesium citrate can have problems with gut issues, as it can act as a laxative. If you are sensitive, perhaps try magnesium glycinate, as it causes less problems. Magnesium L-threonate is another option and it can assist with sleep.
I do hope you find the answers soon and get back to how you used to feel. I have swings as well and often wondered if it's down to an undiagnosed condition.
This is in reply to your first comment, but it keeps jumping down!
Yes, me too, but I'm so worried that they'd rather take me off T3 than educate themselves about it, I just keep my head down and try to manage by myself, and with help and information from here. I've been doing this for over 10 years, but this is the first time I've felt so confused about what I'm experiencing. Right now I feel so sweaty and horrible - and that's on a smaller dose. Previously, taking less has always made my temperature drop!
It's a sad state of affairs that medicine in general is probably in the same position on thyroid issues as they were 30 or 40 years ago, certainly seen no improvement in understanding or treatment on the NHS since I was diagnosed about 12/13 years ago. I feel for all those that suffer from this condition and particularly young people who may never get a normal life from this. I never read or see anything about potential breakthroughs in this field. Makes me wonder if anyone is doing any worthwhile research.
I recall reading in the STTM book that a high unexplained FT3 level could be due to pooling. This can be a result of high cortisol. Maybe a cortisol saliva test might be useful?
I have to admit that I know nothing about pooling - always more research needed! I did have my cortisol checked along with my thyroid and it seemed fine, although it was a blood test rather than saliva.
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