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!