I'm very confused about what my next steps should be and I'd appreciate any advice. I feel very alone with this. 😪
SUMMARY: Basically, I had a pretty normal thyroid panel. I was put on thyroid meds as a trial treatment for life-altering symptoms I had at night - T4 plus a hefty dose of T3. I was on meds for about a year in total, with suppressed TSH for about 7 months. The meds did not fix the night time symptoms. They did help in other ways, with metabolism, heart rate etc. But since they didn't seem to fix the debilitating night time symptoms and since I'd had a pretty normal thyroid panel before, I weaned off meds this summer. And I've been left with really pretty horrible results. My TSH is very normal - but my T3 is far below range, my TT4 is below range and my free T4 is only just scraping into range. I don't know what to do next. Why have I not recovered previous function?!
Here is more detail with labs:
Before going on thyroid meds, my labs were pretty normal - although my T3 was low in range and I had high rT3 (antibodies always normal, so not always tested):
TSH 1.37 (0.270-4.2)
free T3 3.9 (3.1-6.8)
free T4 18.6 (12-22)
rT3 32 (8-31)
Due to some severe symptoms I was getting at night, as a 'trial treatment', I was put on 15mcg of T3 only (by a private online thyroid doctor in the UK). The goal was to boost my T3 and bring down my rT3 and to see if this impacted my symptoms.
My symptoms were:
- Heart beating hard and fast at night and in my sleep (95bpm in my sleep, when my normal pulse in my sleep is very slow at 38bpm).
- Inner tremors - at their most intense in my whole body and core, feeling like my heart - but if I did an ECG during one of these episodes, it was always normal. (I had a Cardio ECG device to attach to my iPhone and these results were emailed to a cardiologist nurse who confirmed they were normal.) At their least intense, this feeling is in my feet only and feels like a light buzzing feeling. It is worst at night but it can also happen during the day sometimes. Echocardiogram was normal.
- Hypnic jerks - every time I start to fall asleep, I jerk awake and startle. It can feel like it's not 'safe' to fall asleep. After a few times of this, my body/brain then won't let me even try to fall asleep.
- Insomnia as a result of all the above.
I am 46yo and all this began 3 weeks after beginning HRT when I was 43yo. So of course I tried stopping HRT. Increasing HRT. None of that did anything. I'm with the Newson Clinic who recommended getting up to 450-650pmol with my estrogen - that seemed to help but didn't totally get rid of it.
I pursued many things before the thyroid trial, including all nutrient deficiencies. It has been a 2 year quest to find the cause of these symptoms. As part of all that investigating, I ran the above thyroid panel.
After the 15mcg T3, I was then put on various different amounts of thyroid hormones. Because the symptoms continued, the doses were adjusted. I even went up to 75mcg of T3 only in case I couldn't tolerate T4. But most of the time I was on about 50mcg T4 and between 30-45mcg T3.
Since my symptoms continued through all this, I concluded they were not due to thyroid. I had been working on getting my estrogen higher and the symptoms improved a lot when I did (without totally going - of course there is the chance that I need optimal thyroid AND optimal estrogen, which I'm not sure I've yet hit at the same time). I decided to wean off thyroid meds this summer - with the consent and support of my doctor. I followed his advice and cut the T4 to 25mcg to begin with and then reduced 5mcg of T3 every few days, stopping the last 25mcg of T4 at the end.
I then waited 6 weeks and got these results back:
15th October 2024 (9am)
Blue Horizon venous draw (Platinum test)
Off all meds (6wks off)
TSH 2.38
free T3 2.6L (3.1-6.8)
free T4 12.3 (12-22)
Total T4 64L (66-181)
rT3 17 (10-24)
Reverse T3 ratio 0.15
Anti-Thyroglobulin Abs 16 <115
Anti-Thyroidperodidase abs 15.5 <34
Thinking that perhaps I just needed to give it a bit more time, I waited another 4 weeks and tested again. This time with a different lab. But the results were almost identical:
9th Nov 2024 (8.10am)
Lola Health venous draw
Off all meds (10wks off)
TSH 2.66
free T3 2.5L (3.1-6.8)
free T4 12.4 (12-22)
By this point, my hair was falling out. My feet were ice blocks. My metabolism was slow. My sleep had become even worse.....
I felt so bad I started 15mcg of T3 only again about 10 days ago. (I increased gradually 5mcg every few days.) This small dose is easy to come off again. But I have to decide what to do from here.
SO - WHAT DO I DO!?@?!?!
I just had an appointment with the online thyroid doctor today. (Not the same doctor I started with. I lost faith in her and have been with another doctor for a while.) He says that taking thyroid meds does not permanently change anything and your body should revert to previous functioning this long after coming off. But this isn't what has happened for me. He also says this is not about "recovery" and just waiting longer for things to improve - this is my baseline and where I'm at, and things won't just get better from here. (There is zero improvement between the above 2 sets of labs, also.) He said something about inflammatory processes. (I have zero results which would suggest this, CRP, ferritin, etc all normal.) But he essentially thinks I should re-start meds fully again. And because I do need some T3 to keep my rT3 down, this will mean a suppressed TSH again.
Someone in a Facebook group told me about central hypothyroidism and slightly terrified me, saying how I should get a referral to an endo and an MRI of my pituitary and ACTH and other pituitary hormones tested. The problem is I am entirely outside the NHS system at the moment. My GP knows I am on thyroid hormones privately but that's about all. And, if she is only going to look at NHS labs, even if I came off meds again and got her to test me, my TSH would be normal and my free T4 would be just in range - as above with my last 2 tests. Is she going to refer me, on the basis of the above results?? The Lola Health test uses an NHS lab, although obviously it wasn't done through the NHS. But I don't want to go through coming off my 15mcg of T3 so she can test my TSH and free T4 - and then she refuses to refer me to an endo.... !!?
Do I really need to investigate all this pituitary stuff thoroughly - or can I just go back on meds and deal with it like regular hypothyroidism?
Can I get a pituitary MRI privately via one of the many MRI clinics around the UK? Can I test ACTH and growth hormone privately? Is this necessary or overkill? My prolactin is just above normal. (It was normal one year ago on 15mcg T3 only.) My FSH, LH are all normal. I am on HRT. If this is anything serious, it has coincidentally developed during the one year I have been on thyroid meds. I don't understand how this can have nothing to do with being on meds - despite happening exactly whilst I've been on them?!
The Newson Clinic will only prescribe hormones. The thyroid doctor will just prescribe thyroid meds. And the NHS don't know anything about all this and probably wouldn't refer me anywhere.
Lastly, I have a history of disordered eating although never formally diagnosed with anything and with a normal BMI of 18. (I would eat normally for one day and then eat just 800 calories because I seemed to gain weight so easily. I was trapped in a vicious cycle. This has been the case my entire life from 16-46. I got out of this on the thyroid meds, which enabled me to eat normally (2000 cals) for the first time ever. I have continued to eat normally since weaning off them.) I suspect that most of my life I've had low in range T3 and high rT3.
I found this research paper: pubmed.ncbi.nlm.nih.gov/311... It says: "A delayed TSH response to TRH was noted in 66% of [anorexic] patients, hyporesponsiveness was seen in another 24%, and a normal response in only 10%. " And EDs can do weird things to prolactin as well....
Are there any other folks with an ED history who can shed any light on any of this?
I know this post is very long - and I've still left out a ton. But if anyone gets this far, thank you for reading!
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xenakis
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Central Hypo is when the pituitary or the hypothalamus are at fault, rather than the thyroid.
As I'm sure you know,, TSH is a pituitary hormone. When the pituitary senses there's not enough thyroid hormone in the blood it increases output of TSH to stimulate the thyroid to make more thyroid hormone.
As you can see, your FT3 is very low, but your TSH is also low-ish. With an FT3 that low, one would expect the TSH to be higher.
I'm going to say straight off that rT3 is a total red herring! It has nothing to do with anything. It is high because your FT4 is too high, because you are a poor converter (probably because your TSH is so low). But rT3 doesn't do anything. It is inert and only stays in the blood for about two hours before being converted to T2. And you certainly don't need T3 to bring it down. The way to bring it down - although that is irrelevant - is to lower the FT4. But you can't do that unless you are on thyroid hormone replacement. So, let's forget the rT3 and never mention it again!
Unfortunately, you consulted doctors who know next to nothing about thyroid. You haven't given a time-line, but it sounds like too many changes were made too fast and too often. And starting you on 15 mcg T3 was absolutely the wrong thing to do.
This is an unusual situation, because even when hypo, the FT4 is not usually that high and the FT3 not usually the much lower. Generally there is a slight difference. So, I understand the logic of starting you on T3 only. But you should have been started on 5 mcg, not 15..
However, what is done is done, and now ou need to look to the future. So, what to do? Well, for a start, stop increasing your T3! You're going too fast again, and that is never going to work. Stop at whatever dose you're on now and hold it for six weeks, then retest.
Do I really need to investigate all this pituitary stuff thoroughly - or can I just go back on meds and deal with it like regular hypothyroidism?
Yes, you do need to investigate this 'pituitary stuff', because the pituitary makes quite a few hormones that could also be low. Your HGH is probably going to be low, anyway, because your T3 i so low. But there's also ATCH, which stimulates the adrenals to make cortisol. I don't think you can get either of those tested privately, you need an endo to order them. I'm not sure but I think you can get a privated MRI, but it won't necessarily show up anything. So, you do need to get it investigated professionally.
My cortisol is normal, bordering on high sometimes. I have had several AM fasting blood cortisols done and sometimes they are normal and sometimes they are slightly above normal. I have had 2 saliva cortisol tests done, one with Medichecks and one with Genova. Both showed normal cortisol AM and mid-morning and then above range at 5pm and before bed. However, insomnia causes high cortisol... But definitely there has been no low cortisol at all.
With the time line, it was about a year I was on thyroid meds in total. I think the difficulty was that the 'symptoms' we were trying to treat turned out not to be due to thyroid. So trying to influence them by changing dose didn't achieve anything. It was several months on each dose though.
Should I really hold on 15mcg of T3 only and then re-test? I assumed that would be too little.
I have found a private ACTH test but it's a one-off test (in a hospital) not the challenge kind of test. Is that okay?
In terms of getting an endo to investigate them, do you think I would be referred with in-range TSH and free T4 should my GP test me? (And what are the waiting times there...?) Or should I pursue a private endo? (And what is that going to cost....)
Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and be able to advise you better. Click on your image icon to start. Fill out the free text box at the top.
Exactly what were your vitamin results along with reference range for each test - numbers in brackets after your result?
- Heart beating hard and fast at night and in my sleep (95bpm in my sleep, when my normal pulse in my sleep is very slow at 38bpm).
38bpm for heart rate in sleep is way too slow. Likely the low FT3 causing that.
The higher heart rate in sleep could be due to low ferritin or iron. Even within range but low can exacerbate this syndrome. Theres a condition called Periodic Limb Movement Disorder that can cause autonomic changes during sleep. You would need to see a specialist sleep clinic for diagnosis.
Your thyroid results do look like central or secondary hypothyroidism and they wont be helping anything, so raising thyroid levels will help your symptoms somewhat but quite likely theres something else going on.
Yes, iron has been fully investigated and I had an infusion to rule it out. Ferritin began at 30, raised to 65 with oral supplementing and then stalled so I had an infusion privately which got it up to 250, where it has more or less been since - although it has now come down to 115 on the last test with a TSAT of 45% though, despite not supplementing before. So my body is doing stuff moving iron around. I have re-started low dose supplementing. But I don't think this is the cause of my symptoms.
My heart rate is always aounr 38 bpm in my sleep and has been most of my life. That's what I mean by this being a lifelong state.
It's not really a sleep issue. I mean, I get these symptoms at night which in turn make it hard to sleep. It's beyond CBT for sleep. It's more about diagnosing what is causing these symptoms. They could well be high cortisol caused by low estrogen or thyroid. I feel like I need to optimise thyroid stuff first - I can't be sitting there with thyroid labs like this and complaining about sleep issues - the first thing any doctor would do, is to fix the thyroid first. So I first need to figure out how or whether to do that.
B12 was 495 originally, but I know supplementing can falsely affect levels so I ordered B12 shots from Germany and gave them to myself EOD for months with no improvement.
Folate is 20 and has always been high teens or 20.
D3 is optimal at 121 nmol/l.
When I say I've checked all the nutrients etc out, I really have...
I haven't read all your post. If you have high thyroid hormone levels for some tome, several months or longer, the hypothalamus pituitary thyroid axis can become down regulated. In plain terms the pituitary produces less TSH than it used to. This typically happens when people have Graves' disease. After three to twelve months thr axis recovers in most but not all patients.Unfortunately, the studies that have been done have only checked that TSH returns to the reference interval. No study has trid to establish what proportion of patients' TSH returns to the original or perhaps typical levels
So, your TSH may recover or it may not. It's unlikely to be central hypothyroidism, it is rare and unlikely to come on at the same time as your thyroid treatment.
I'm in favour of doctors prescribing thyroid hormone when a patient has signs and symptoms of hypothyroidism. If they respond but are not well with normal levels then it is reasonable to try higher doses. I don't think it is good practice to prescribe high doses of thyroid hormone if there aren't signs and symptoms of hypothyroidism or if the patient isn't responding to hormone treatment.
This is v interesting... Although I'm not sure what I should do to help it recover? I did go up to 75mcg of T3 only at one point. I also had a lot of symptoms of being over-medicated, like random heart palps etc.
However, my TSH has recovered - in that it is normal.... it's my other thyroid levels which aren't...? I mean, I found one research paper which talked about it taking up to 6 months after a TSH suppressive dose of meds, to recover. (If that's the one you're talking about.) But by 'recover' it meant normal TSH - not other levels.
There were a few studies showing it taking time for TSH to recover.
You say your TSH has recovered but it hasn’t really considering both your fT3 AND fT4 are borderline or low. In these circumstances we would expect TSH to be quite high. (It would be OK if one of fT3 and fT4 were borderline low and the other borderline high).
The other issue is I would expect 2.66 dollops of TSH to be enough to stimulate a healthy thyroid to secrete average levels of fT3 and fT4 but it isn’t in your case. There’s no reason to suspect your thyroid has suddenly packed in so I suspect you are secreting TSH with reduced bioactivity. TSH is not a single molecule but a group of isoforms with varying bioactivity. Unfortunately, TSH bioactivity is only measured in research studies, there isn’t an available blood test.
I have seen studies that showed a TRH stimulation test can sometimes restore the axis. Otherwise I don’t know of any way to recover. You only choice is to stick it out for a few months and see if you get better. If not you will probably have to take some T3 to improve your symptoms although I don’t think you will be perfect.
I’m in the same boat, I needed high dose hormone for many years and can’t get better. An endocrinologist promised a TRH stimulation test (I had a major car accident which could affect my pituitary) but he was just a lying x and I’ve reported hi to the GMC.
For the above reasons it is important to try and get better without suppressing TSH because it can mess up a healthy pituitary. Some people need high hormone doses but we should try hard to avoid suppressing TSH.
I forgot two points. 1. I’ve seen loads of cases on the forum where patients have a normal TSH and low normal fT3 and low normal fT4. They invariably have substantial signs and symptoms of hypothyroidism. I wouldn’t do rT3 tests, they are an expensive waste of money.
I would go against a previous suggestion and say your problems are NOT central hypothyroidism because FT4 is 66% through range, and TSH is corresponding for someone not medicating (at that time). This FT4 amount would be enough for many to function well including myself, and on the surface is quite a good result when RT3 is over-range (T4 metabolises to RT3 so could effectively be higher with the right encouragement), and why FT3 would be lower.
When you get a large amount of T4 metabolising to RT3, FT3 will drop also as is congruently metabolised to an inactive form of T2 by a thyroid hormone enzyme called D3. D3 will not differentiate its action between T4 or T3 but metabolise both to inactive hormones at the same time.
Your elevated RT3 is likely due to your long term eating disorder, and as you say RT3 has likely been elevated with low T3 for most of your life. Long term anorexia holds high negative implications for thyroid hormone metabolism which relies upon enough calories, fats and protein for good function. Your symptoms sound the same as many of us who suffered years of inadequate thyroid hormones, although possibly for different reasons. Internal tremors are common as is insomnia, hairloss, etc.
You can’t take thyroid meds without it influencing the signalling system of the HPT axis. This is the feedback between the brain, pituitary and thyroid gland that becomes down-regulated when thyroid replacement meds are introduced.
I've just read you also suffer high cortisol which could also further impair conversion of FT4 to FT3 .
radd thanks for your reply... but I'm just sure you realised those are not my most recent labs? They are just the labs I had before going on meds and not what I'm struggling with now.
Since coming off meds, this is what I now have - and what I'm not sure what to do about (and why someone else above suggested central hypo):
The results I went by are the initial you gave. Any subsequent results have been coloured by your medicating thyroid hormone replacement meds and therefore difficult to use when deciphering the original problem.
Yes, current TSH looks low in respect of thyroid hormone levels but is known to have a slow response when too high a thyroid hormone replacement dose has been medicated.
To start any thyroid meds with a ‘pretty normal thyroid panel’ is suspect but to start on a good dose of T3-only meds when T4 hasn’t even been trailed seems madness. It seems to me your doctor was using an old fashioned method to clear RT3 by using T3 -only meds but even then this method should never be used if the patient hasn’t previously medicated thyroid hormone replacement.
What is more incredible is your doctor raised to 75mcg T3-only meds in case you couldn't tolerate T4, but you then say you medicated 50mcg T4 and between 30-45mcg T3 most of the time. These doses remain hugely over the top for most of us.
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Is this hypothyroidism?
Thank you for your help! I have Hashimotos and have been having a Hyperthyoid flare up for the past 3 months..heart racing, diarrhea, 
Central hypothyroidism?
Effects of thyroid medication, T4/T3 on exhausted adrenal - resulting in RT3 and Thyroid binding globulin
NEED YOUR HELP;This is the only complete blood test I have ever had in my last 30 plus year as Hypothyroid patient
