I am a 31 year old female. I have SELF DIAGNOSED as hypothyroid (normal TSH, LOW free T3, normal(ish) free T4). I had an eating disorder for 20 years and this can disrupt the HPA axis making TSH and T4 normal but T3 low due to conversion problem. I KNOW the dangers of self-medicating but I was living abroad at the time in a place where I would not have had a chance in hell of finding a decent functional medicine doctor. And traditional GP's would just test my TSH, tell me the result was fine and that my extreme lethargy, body temperature of 35.0, hair loss, weight gain, depression, brain fog, ETC was not due to my thyroid function....
I started off with 25mcg of T3 and monitored my heart rate and body temperature as well as symptoms. I incramentally increased the dose and monitored symptoms - mainly fatigue - until I felt relief. This year I got up to as high as 150mcg per day (taken sublingually in one dose).
I felt good for a few months, but never excellent. And recently my body temperature has gone down to a BBT of around 35.0 -35.5. I am EXHAUSTED ALL OF THE TIME. Brain fog is horrendous. YET at the same time, I am losing a lot of weight. I have dropped to BMI 17.5 which would suggest hyperthyroidism. Yet I do not have a single symptom of hyperthyroidism other than weight loss. In fact, I feel very hypo.
Other supplements I take are magnesium, iodine, selenium, l-tyrosine, and an all-round multivitamin.
I am not at the financial means to start working with a functional medicine doctor. So please, does anyone have any idea wtf might be going on. Why am I taking 100mcg+ of T3 but still having a low body temperature, low heart rate (resting around 59-63BPM) and feeling SO tired, ALL of the time??
Any clues/anecdotal stories much much appreciated. I'm desperate. Pissed off. And upset.
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Charlyemmalouise
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I must add that my lifestyle and diet are good. I sleep 8-9 hours a night. Go to bed at 9 and wake 6 or 7. I don't eat sugar or processed foods, or gluten, for many years now. I practice ashtanga yoga daily and do weights at the gym, walk 4-8 miles a day, NEVER drink alcohol or smoke, etc.
Not recently, no. I am taking a sh8t tonne of T3 so I know that my TSH will be suppressed, and T4 I am sure will be virtually none. Would you suggest any tests I should have done? I am considering it, but quite honestly overwhelmed and frustrated with how expensive it is to get private blood testing in the UK
It can be difficult to tell difference between over and under medicated
Essential to regularly retest vitamin D, folate, ferritin and B12
Strongly recommend getting full thyroid and vitamin testing done
If you can afford it, Blue Horizon test includes cortisol
On T3 day before test split daily dose into 3 smaller doses, spread through the day at approx 8 hour intervals, taking last 1/3rd of daily dose 8-12 hours before test
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
THANK YOULooking at thyroid premium gold now. I am aware of the importance of cortisol too and prior to this extreme flare up I did have severe severe stress and 2 nights of 0 sleep, so I'm aware my adrenals could have also crashed...
The most confusing thing about possibly being over medicated is the LOW BBT and heart rate, and low blood pressure (usually 90/60 or less). If I am not mistaken, with hypERthyroid I should be feeling agitated and stressy and have a high BBT, problems sleeping, etc. I can't get enough sleep (as in, I feel the urge to sleep constantly and get 9-10 hours a night no problem) and I don't feel anxious. More depressed than anxious. All of this indicates hypo, rather than hyper.
The thyroid premium gold - how does one get the blood draw for that? You have to book an appointment privately??
Please, when talking about your blood test results, give us the actual numbers: results and ranges. Just saying 'high', 'low', 'normal', etc. tells us nothing of any use.
So, your eating disorder, do you still have it? Or did you over-come it at some point? If you did, did you give your thyroid time to sort itself out before starting self-treatment? After an eating disorder, thyroid problems aren't always permenant, but take time to sort themselves out.
I would never criticise anyone for self-treating. Given the lack of knowledge of doctors, and the medical profession in general, it's often necessary. I do it myself. But, you have to know what you're doing.
I have to say, you didn't help yourself by starting on too high a dose of T3. We would normally say to start on 1/4 of a 25 mcg tablet, and increase by same every two weeks, etc. With hormones, you always have to start low and increase slowly. You must have given your body a terrible shock, which can't have helped matters.
So, now you've worked up to 100 mcg, but by how much have you increased each time? And, how often? The point of starting low and increasing slowly is to be sure not to miss your sweet-spot. If you increase too fast or by too much at a time, you can go whizzing past your sweet-spot without noticing it. It happens so easily because the body can take a long time to adjust - especially if T3 was too low for an extended period of time.
And, that could be what has happened to you. Or, it could be that you have some level of thyroid hormone resistance (thyroid hormone not getting into the cells) and need those high doses in order to force at least some of it into the cells - flood the receptors. Do you take it all in one go? Or do you split it into two or three doses? You say you take it sublingually, well, that's not the best way of doing it. Thyroid hormone molecules are two large to pass through the mucus membrane. It will just hang around in your mouth and maybe get swallowed, if it doesn't bind with something first. All forms of thyroid hormone should always be swallowed with a large glass of water. It cannot pass directly into the blood via the mouth.
Other supplements I take are magnesium, iodine, selenium, l-tyrosine, and an all-round multivitamin.
Taking magnesium is good, no problem. Selenium is necessary for conversion, but as you're taking T3, possibly not necessary, but you would need to get it tested to know.
Iodine could be the whole heart of the problem! This is not something anybody should take without first getting tested to see if you need it. If you don't, excess iodine can cause a whole lot of problems. It is not some magic potion that makes your thyroid work better, as some people tend to think - including some doctors! - it is just one ingredient of thyroid hormone. l-tyrosine is the other. But, doesn't matter how much flour and sugar you throw into the mixing bowl, you ain't gonna get a cake if your oven's on the blink! What is the rational behind taking these things? If you are taking 100 mcg T3, you are already getting 48.75 mcg iodine daily, which is recycled in the body, plus what you get from your food - and on top of that you're taking a multi-vit which doubtless contains iodine too? You are getting much too much iodine when your thyroid actually requires less because you're taking T3. Did you know that excess iodine can cause thyroid cancer? Not that I want to frighten you, but...
And, the multi-vit is a whole nother story! A very, very bad idea for all sorts or reasons. Such as if it contains iron you're not going to be able to absorb any of the vitamins is it. And, even without iron, the ingredients are usually very poor quality and badly absorbed, contains things you don't need and things that are potentially dangerous like iodine and calcium.
If you want to supplement, the best thing to do is to get the basics tested: vit D, vit B12, folate, ferritin, iron - iodine if you think you need it, calcium same - and then just take what you need according to the results. Supplementing is a complicated business, and not achieved by taking one little pill with a little bit of everything.
As to functional doctors... Be very, very careful with them. They do not know any more about thyroid than any other type of doctor, but they do have some very weird ideas. We read such horror stories on here about functional doctors, and what they've done to hypo patients.
So, what can you do? Well, in your place, to begin with, I would find a way to get complete thyroid testing:
TSH
FT4
FT3
TPO antibodies
Tg antibodies
vit D
vit B12
folate
ferritin/iron
zinc
copper
Then, post the results on here and let us have a look at what is going on. With the full story, we're much more likely to be able to help you.
Thank you. My free t3 and t4, TSH I got tested in Thailand.
Free T3 2.14 pg/mL
Free t4 0.96 ng/dL
TSH 1.43 uIU/mL
I also got iron and ferritin tested:
Serum iron 65 ug/dL
Ferritin 86.2 nG/mL
This was 18 months ago. I will get the other tests you suggested and report back!! I really appreciate the long and detailed response. Taking on board your advice re iodine/selenium and the multi-vit.
The eating disorder... I was severely bulimic for 8 years. From 13-17 I was anorexic and very underweight. Lowest BMI was around 13/14. I have occasional flare ups of bulimia but nowhere near the same extent as before when I was binging and purging 20 x a day. Maybe once every 6 months I will do it one time. BUT over the last 6 months, when I have been very stressed and unhappy, it has been happening more. I know that I have low stomach acid so I take betaine hcl with every meal to help mineral absorption.
I'm afraid results without ranges are meaningless as they vary from lab to lab - and certainly from country to country. So, we need the ranges that came with your results - the numbers in brackets, usually, after the result.
according to this labs ranges, results were normal. But when I investigated via a thyroid doctor (Westin Childs) who regularly prescribes T3 only therapy and seems to know what he is talking about, free t3 was low
There's no such thing as 'normal' where thyroid labs are concerned. When a doctor says normal, all he means is that the result falls somewhere within the range. But, it's where it falls in the range that is important.
I'm not convinced that Westin Childs knows that much about thyroid. Yes, your FT3 is low at 20% through the range. But so is the FT4 at 33.33%. In a euthyroid person (someone with no thyroid problems), the FT4 would be about 50% through the range. FT3 a little lower. So, you are hypo in the usual sense of the word. And, the intelligent thing to do would have been to start you on T4, and optimised that, first. T3 only should be a last resort. The majority of people also need a decent level of FT4.
Your TSH is another matter entirely. It's too low for the level of your Frees. So, he's also right that your ED could have down-graded the HPA axis. OR, you could have a pituitary problem that had nothing to do with your ED. And, he should have verified that by testing your other pituitary hormones. It could be that one of those - or all of them - are also low, causing your present problems. There is a protocol for diagnosing and treating hypothyroidism, and he didn't follow it.
Of course, you're perfectly right that you would never have got anywhere with your bog-standard NHS GP, either. The barely know where the thyroid is, so they haven't a clue about the pituitary.
Where are you now? Are you in the UK? Or still in Thailand?
Thanks so much for this very helpful and detailed analysis!!
Actually I never saw Westin childs as a Dr - he makes YouTube videos. I dosed myself completely independently of any doctor. A good friend of mine also has hypothyroid, and has had excellent results on T3 only. He suggested I tried it. I had read countless reports of levothyroxine not helping people on the internet, and I also couldn’t get it in Thailand. But I found T3 via a body holding company..
I am now in the UK after 6yrs in Asia! I get my T3 online. Perhaps I should also get some T4?!
I will absolutely do the blood tests you and others suggested. No doubt there. Just have to wait until my next pay day.
THANK YOU
I feel like there is hope, and people who can and are willing to help me, without charging me thousands of pounds. That means so much!!!!
Before taking any T4, you would need to slowly reduce your dose of T3. But, wait and see what your levels are like, first.
Your friend may do well on T3 only, but that doesn't automatically mean that you will. We're all very different, and treating hypo is a very personal thing. Doctors try to stuff us all into the same box, but it doesn't work like that. We need to find what works for us as an individual.
Additionally, I have now split my dose to one in the morning (10am) and one in the afternoon (4pm). I'm on 125mcg now from 150mcg. In the interim whilst I wait for blood testing, would you suggest dropping this any lower? Sublingually it appears to work for me. Otherwise I'm not sure how or why I'd be dropping weight so steadily whilst eating 2500 calories a day or more. I do exercise a lot, but don't believe it's enough to make up for this weight loss. I believe that is down to the T3.
Yes, it may appear to work for you, but you're on a very high dose, so you're bound to swallow some and get something out of it. But, if you swallowed it, you might need to take a lot less.
These labs were done before I took any thyroid hormone of any sort. That year I gained about 10kg for no reason, and was depressed, exhausted, cold, etc.
For YEARS I suspected a thyroid issue, but my GP in the UK tested TSH and told me I was fine. This was frustrating as I was always tired and with a low BBT. But no one would take me seriously. Then in 2020/2021 I had the worst flare up of symptoms ever. And I needed to take action.
I found Westin Childs the Dr I mentioned previously, who detailed the disturbance to HPA axis that an ED can cause. Resulting in normal TSH but low T3. His wife had an ED and she got better from hypothyroidism with just T3.
I was desperate, and am somewhat of a reckless person when it comes to taking risks. So I got these bloods done as it was all I could afford at the time. And then ordered T3 online, and started taking it.
You seem to know what you are talking about, Grey Goose. For RIGHT NOW, what would you suggest I do in terms of taking immediate action? I can't afford blood work until next month. I'm a freelancer and in the process of buying my first home, so money is very tight.
Do you think I should drop the dose of T3 lower?
I'm starting to feel like there is no hope for me. I can't remember a time in my life when I've felt good for more than a month at a time. It is grinding me down and I am pretty suicidal to be honest. Especially now reading the responses and seeing that I have probably contributed myself to the current state I'm in. I won't hurt myself, don't worry.. But if you have any suggestions of things I can do right now, I'd appreciate it.
Thanks so much for taking the time to respond to me!!!
Day before test you need to take last third of daily dose 8-12 hours before test…otherwise you get false low Ft3 result as Ft3 is only in blood for approx 12 hours (though it lasts longer in cells)
No thyroid hormone replacement works effectively until your core strength vitamins and minerals especially those of ferritin, folate, B12 and vitamin D are up and maintained at optimal levels.
In the first instance we need to see where you are in regards to your TSH, T3, T4, antibodies, inflammation, and the above listed vitamins and minerals.
When with these results and ranges just start a new post with the results and ranges and follow the procedure as already detailed and go through one of the private companies as listed on the Thyroid UK website.
Fast overnight, just taking in water - get an early as possible appointment for the blood draw, stop all supplements for around 7 days prior to blood test and arrange the appointment for ideally a Monday or Tuesday and you'll likely have the results back within 48 hours and you will be talked through your next steps back o better thyroid health.
Well we need this full panel to see what's going on and what needs to happen next.
A strong core strength is essential to support you through - I'm guessing the eating disorder has likely messed up your metabolism and as you say your HPT axis down regulated itself but this will become clearer once we have some up to date results and ranges.
B12 shots aren't going to help much unless you also take a B complex, containing all the other Bs. The B vits all work together, so need to be kept balanced.
Iodine is an essential trace element, vital for healthy thyroid function. Adequate levels are required to enable the production of T3 and T4 thyroid hormones, whilst also being required in other areas of health. Deficiencies can lead to impaired heat and energy production, mental function and slow metabolism. Urine iodine is one of the best measures of iodine status. This test is not performed as a loading test, but can be used to establish existing levels or to monitor iodine supplementation.
Could be the converse effect of T3.Overmedication can present as undermedication!
I need high dose T3-only to function
I self medicate too.
It helps to remember that different tissues require different levels of T3 and that they don't all "saturate" at the same time. which might just explain your mix of over and under medicated symptoms.
The body takes a long time to adjust.
Currently 100mcg but I did reach 212.5mcg before I had symptoms of overmedication (with weight loss).
I cut back to 50mcg ( medics advice) and very slowly increased again from there.
I was ok on 75mcg for some time before symptoms returned.
I slowly raised to 100mcg and have been there for a few months now.
Having "survived" 212.5mcg I could only assume that I have a form of thyroid hormone resistance(RTH)
With RTH there may appear to be adequate serum FT3 but T3 has to reach the nuclei of the cells before it becomes active.
If it fails to reach the cells via T3 receptors then it just remains sloshing around in the blood until any excess is metabolised and excreted
The greater the level of hormone resistance the lower the level of cellular T3
To raise that level a supraphysiological dose is required to act as "a bettering ram" against the cells which enables some of that large dose to enter the cells and become active.
That's clearly no scientific explanation but it gives you the gist!!
That low T3 causes cellular rather than glandular hypothyroidism.
Without RTH that dose would have made me very unwell....it didn't!
This was wholly my own conclusion based on info here, extensive reading and personal experience.
The one endo I saw insisted I should take levo
After 20 years that had left me barely able to function!
He also insisted that I did not have RTH
But....couldn't explain what was wrong with me
So I took control and self medicated!
You have already been given excellent advice here so I'm not suggesting you have RTH but just extending the possibilities.
My journey is detailed in my profile ( click on my avatar)
Having said all that I am just one voice and I strongly suggest that you follow advice given regarding full thyroid testing before you consider anything other actions.
Without the support of this forum and much related reading I would not have been able to discover why I had reached the stage where I could barely function.
I understand how you feel.....been there!
There have been dark times but always over-ridden by a determination to find the longtime elusive answer.
Best of luck, ask as many questions as you like and please keep us posted.
Thank you so much for this!! I will definitely look into this. Are there any tests for thyroid hormon resistance?
If it weren’t for the fact that I’ve lost a LOT of weight, despite eating a lot of food, I’d be convinced that’s my issue. I feel VERY hypo. Have alllll the symptoms, other than weight gain and water retention.
Ugh! So confusing! I will get bloodwork done asap. Thanks for sharing your story - much appreciated!! 😘
SOME thing is happening. Cos I’ve lost SO MUCH WEIGHT. My bmi is 17.0 and I eat tonnes. If it weren’t for this, I’d be tempted to think the meds were poor quality. I am maintaining weight now, but over the last year I’ve gone from bmi 22 to 17. Which is a loss of ahout 13 kilos.
You did mention that you got your T3 from a body building site. What strength are they and who are the manufacturers. SlowDragon what do you think about this?
‘Why am I taking 100mcg+ of T3 but still having a low body temperature, low heart rate (resting around 59-63BPM) and feeling SO tired, ALL of the time??’
Why have you taken your T3 meds so high?
Everyone has a sweet-spot and even given your possible HPA axis dysfunction influenced by previous eating disorders, unless you have (genetic) hormone resistance you are well over-medicated. With thyroid hormone replacement there becomes a tipping point where more FT3 will be turned into unusable metabolites than the usable that brings well-being.
The following article explains T3 metabolites & pathways, and how not all the T3 meds we medicate will make it to the transportation stage into cells, metabolised within the cells, or to achieve signalling activity, because of the many non-deiodination losses including T3 sulfate, glucuronate, Triac, and urinary loss that both circulating and intracellular levels may suffer.
This exemplifies that more is not always better and even good FT3 levels are not a guarantee to achieve well-being as may not address/correct the underlying problem of the metabolic losses.
I would say you need to reduce your dose and address any under lying factors that might impede thyroid hormones from working effectively such as iron, nutrients, and corstisol levels.
Also I wouldn’t be taking iodine or tyrosine when medicating thyroid hormone replacement as both are used in the making of thyroid hormones and can influence how meds are utilised.
Thank you for this. I will read this study tomorrow!
I got to 100-150 because i started at 25 for a couple of months, and felt no different. I then went up to 50. Then, I could no longer get cytomel. I could only get these teeny tiny little pills of liothyronine that were absolutely IMpossible to split. So it was either 50 or 100. I went up to 100 because I was still having lots of symptoms.
I found some advice saying as long as you monitor temperature and heart rate, you won’t go hyper, or over medicate. This is what I did and my heart rate/bbt stayed low. The only sign I have of overmedication is weight loss.
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