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....)
Should I really hold on 15mcg of T3 only and then re-test? I assumed that would be too little.
Of course it's too little but with hormones - all hormones - you should start low and increase very slowly. The body needs time to adapt. Going too fast is counter-productive and will only set you back.
If you tried all those different dose, and were on each dose for several months, it must have taken a lot more than a year. Or else there are a lot of doses you haven't tried. But after all that, and then being off hormone for some time, then restarting on too high a dose, it's time to give your body a break and allow it to catch up with itself. I would most certainly recommend holding for six weeks and retesting.
If your cortisol is high, there doesn't seem much point in testing ATCH at the moment. Wait and see how it goes and keep testing thyroid levels. But if it goes too high, you will need to be tested for Cushing's. And that does need an endo. I have no idea if your GP will refer you, but s/he should with high cortisol, nor how long the waiting list, nor the cost of a private endo because I don't live in the UK.
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 have all the information in terms of wake/sleep cycles, heart rate during sleep, hours of sleep - there are not other sleep tests which would be useful according to my thyroid doctor. I already have trazodone to take when I need it but I don't see medicating my sleep with sleeping meds that increase the risk of dementia and other side effects as being a solution, when I have a thyroid panel which looks like mine currently does
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.
Thanks. The problem for me is that unless I stay almost totally on T4, I will end up with suppressed TSH. Going by past labs anyway. Last time I didn't have a suppressed TSH on 15mcg of T3 but as soon as I added 50mcg T4, it was suppressed. I never had low T4 before taking thyroid meds, if anything it was always high (with a lot of that going to rT3).
I do think rT3 tests are useful for me, though. When my rT3 gets too high in relation to my T4 and T3, I get symptoms. And whilst most people can tell rt3 stuff by the other tests, it's hard for me to do that - as it's now 17 and halfway through the range, with T3 way below range and T4 barely in range (TT4 below range).
I can't bear the thought of going on for months like this, with a few hours of sleep a night and my hair falling out....
Your past labs may no longer be relevant if your axis has been down regulated. I would use a mix of T4 and T3 trying to find the lowest dose you do OK on. rT3 generally rises if T4 is high or there is concurrent illness. I would go by symptoms rather than expensive rT3 tests which can be unreliable if not done by a good lab.
Thanks, this idea about the axis down-regulating makes a lot of sense. I had a slightly weird thing happen with my last set of labs before I weaned off, where I had increased my T3 and yet my levels went down and not up. First I was on 50mcg T4 and 30mcg T3:
50mcg T4
30mcg T3
19.5 hours since last T3 dose
TSH 0.007
free T3 4.9 (3.1-6.8)
free T4 14.1 (12-22)
rt3 18 (12-35)
....
I increased to 45mcg T3 because my T3 wasn't that high and I still had these night time symptoms and then I had:
50mcg T4
45mcg T3
19 hours since last T3 dose
TSH 0.011
free T3 3.9 (3.1-6.8)
free T4 8.9 (12-22)
Thyroglobulin antibodies 17.5 (0-115)
Thyroid peroxidase antibodies 15 (0-34)
If I had been staying on meds, we would probably have increased them on those labs. Instead, that is where I weaned off from. I feel like something happened there. But not sure what.
My approach this time to taking meds is very different. Last time I went into this thinking it was a very short term thing I was trying out to see if it impacted on my night time symptoms and could help those. I wasn't concerned with setting things up for long-term health and stability and I didn't believe I would be on meds very long. This time, I would go into it thinking it's for the long term and aiming to take what I need to be in range and to be slower and more cautious with changes.
jim, if you get this... I was re-reading your first reply to me above. In terms of the TSH recovering in 3-12 months.... What would you think would be the best approach to facilitate that? I guess my problem is that my symptoms (and bloods) are too severe to sit around like this for 3-12 months, hoping they will improve. I have just added 50mcg T4 back in, so I'm now on 50mcg T4 and 15mcg T3 and I will hold here and re-test in 6wks. But in terms of recovery... How do I move on from here? Just gradually and incrementally reduce my dose and hold there, hoping that my TSH will step in and produce thyroid to make up the difference? Or do I really have to come off all meds and wait - which I'm not sure is possible, given how bad things are...
It's really difficult. I wouldn't struggle for twelve months but maybe three. 50 mcg T4 and 15 mcg T3 equates to 95 mcg T4 so that's quite modest. My TSH was thoroughly suppressed for a decade and I haven't been able to recover it. There is some evidence that a TRH stimulation test helps restore a normal TSH but I don't know an endocrinologist who will give it a try. See where you are in six weeks and notify me when you have your results.
Thanks, well I'm now on 50mcg T4 and 15mcg T3 - so I don't think I'm going to know what my own body can do unless I come off again. Which I don't fancy doing after last time. But I did wait until 10wks off meds before starting again, which is only 2 weeks short of 3 months.....
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.
I was off meds for 10 weeks at the last test. Now a few weeks more. Hair is falling out. 4-5 hours sleep a night. Vibrations 24/7, worse at night.
It was a slippery slope with the meds because the doctor at first gave me 15mcg of T3 only (5mcg 3x/day) to clear the rT3 and boost the T3. It did this, but it also sent my T4 below range - as T3 only does. However the doctor appeared not to realise this and freaked out that my T4 was below range and insisted I start 50mcg of T4 as well. She was sure this was the cause of my night time symptoms and insomnia. And I was desperate.
So I added 50mcg of T4 and that suppressed my TSH. Once my TSH was suppressed I then seemed to need more T3, maybe because my own thyroid was contributing less. (It was decided not to increase T4 because on 50mcg of T4 and 15mcg T3, my rT3 was already 20 again, despite T4 being only just in range okay. I made a lot of rT3 from T4. I know not everyone believes rT3 does anything - but my experience is otherwise. So we kept the T4 just in range and used T3 to increase.) I do think I was over-medicated a lot of the time as I had heart palps and faster than usual pulse often. So if I do go back on, I need to be more considered about finding the optimal dose for me.
But even so, I came off meds with a couple of Facebook friends who had been on higher doses of T3 only for longer (one for years) - one of them had fixed her Hashis antibodies and wanted to wean off. Both of them came off and had normal panels within 6 weeks. I was on a much shorter amount of time....
hi, I can’t really comment on your thyroid results as I have been bouncing around with meds dosing for years to try and get it right. I am fairly sure that my toxic relationship with food and years of under eating damaged my body and possibly caused a lot of my problems now.
A BMI of 18 is very low (I kept myself at this for many years) and all my symptoms improved when I finally began to eat well and more importantly, consistently. A healthy weight improves health and cognition.
Also, mega high doses of oestrogen are not necessarily healthy or needed and although private menopause clinics are doing what they think is right for women, I would suggest you watch the panorama programme about hrt that was on recently.
Hi - thanks. My BMI is about 20 now. And whilst I was on the thyroid meds, I was able to eat properly - 2000-2200 calories a day - and consistently, every day. My metabolism sped up and really it was life-changing. I hoped to maintain all that, weaning off - and I have done, although it has been harder not to gain weight being this hypo. So I have all that working for me now, but it has not helped my thyroid recover. I was eating normally and 2200 cals since about April and I weaned off meds in August.
With the estrogen, it's not about doses applied to the outside of your body - but your serum estradiol level and what you are able to absorb. What one woman gets from 3 pumps of gel, another will get from 200mcg patches. I don't absorb estrogen very well and need a high dose transdermally to get me into a decent range. I also do need higher than usual serum levels - between 450-650pmol - to sleep and be without symptoms. I have tried lower doses but they have not helped.
I did watch the Panorama programme and it was awful, biassed, unfair and character assassination of Louise Newson by the BMS who are threatened by her and want to take her down. Access to higher E levels has been essential for me to feel better.
I was an anerexic teenager and it was the start of my thyroid symptoms. My blood results prior to thyroid treatment were similar to yours with a below range T3 and t4 and normalTSH. Central hypothryodism. excuse my spelling. As I am being treated privately I dont see the need to have this investigated furthur. If I wanted to have NHS treatment I could have pushed for it in the past when my symptoms and bloods suggested central and you might want to get it investigated to get a diagnoses other wise not sure that it is nessasary. If there are other reasons to get it all investigated I am sure someone will correct me.
Thanks Hectorsmum, I'm sorry you had to go through this too. How old are you now, for all this to have started when you were a teen? I am also being treated privately and I just don't know whether or how to get into the NHS system to get it investigated - or perhaps i can arrange some private tests myself to rule out the big things and then just accept it and use meds.
I am 58. it took over 35 years for me to get treatment. It might be worth you talking to the nurses at the pituitary foundation, they have a help line. They might be able to help you get diagnosed.
I'm so sorry. I feel really awful like I am at the moment, especially the way it affects sleep. I can't imagine you suffering that for 35 years. What is wrong with healthcare in this country... Why did it take so long? Did they just keep going by TSH and not test the T4 and T3?
I dont think they tested my T3 but myT4 was under the range, they just ignored it. The problem with the healthcare system is that drug companys have far to much influence in the training of doctors. They make their money out of chronic illness so doctors get very little and very poor training re common chronic illnesses.
Just to say I know exactly what you're experiencing at night. At my worst the hypnic jerks would happen every 2 minutes and with a very sharp electrical shock sensation that was extremely painful alongside the high heart rate. I thought I would die from lack of sleep it was so bad. I would then shake all day with the inner tremor. For me, the only thing that broke this circle was a short course of benzodiazepines followed with long term anti-depressants. I know no-one wants to entertain the idea of these meds, and of course there are downsides and side-effects to consider. For me it broke the very bad cycle. I was able to get off the benzo's without issue with a slow taper. I continue the anti-depressant Mirtazapine as without it the insomnia returns. No, it's not the perfect scenario (I still struggle with many issues which I'm investigating) and no-one wants to take these medications. I'm not advising you go this route, I'm just sharing what helped me in a very bad situation when I was desperate. I too had disordered eating patterns with a BMI ranging from 18-25, up and down. I suspect this has done damage over the years. I also had cardiac investigations without anything being found. Your story sounds so similar to mine, I'm sorry you are suffering too.
I'm sure you know this, what is happening to you at night is causing a vicious circle and the hypnic jerks are part of the stress reaction. Sleep is so important for every system in the body to function properly including the endocrine system. Could it be the lack of sleep is potentially leading to more disordered hormone regulation rather than the other way round? I'm throwing that out there and some people may disagree with me. Considering your thyroid hormones looked 'ok ish' before you started taking the T3 and subsequently T4 (I appreciate this was a trial in hope) and that boosting the thyroid hormones with supplementation didn't address the sleep issue, that maybe addressing the sleep issue directly through another route may be an in-road to the HPA axis returning to something that's a little more normal than it is currently. Then later down the road the endocrine issues can be looked at again but with the right specialist this time.
FYI in answer to some of your questions - It was a 9 month wait for me to see an NHS endocrinologist. I have borderline low cortisol and extremely low blood pressure overnight - this is what got me the referral. My fT3 and 4 are both suboptimal but not below range , neither GP nor endo interested in them. I still suffer the internal tremors but no longer the terrible hypnic jerks as I dealt with the sleep issue vicious cycle. I personally found HRT (which I continue to take) only helped with the hot flushes and night sweats, plus regulating my whacky cycle, it did nothing for my other symptoms. I am 46 too.
You can pay for a pituitary MRI scan at a scanning centre but what is happening to your endocrine hormones is more important as many people have incidental findings on their MRI that are not causing hormone disruption so could cause unnecessary worry. MRI tends to be done after there are clear hormone disruptions. There are some private endo's that come recommended by people here - if they also work in the NHS you can pay to see them privately and then they can sometimes refer you back to themselves on the NHS. You need to make a separate post asking for recommendations to be sent to you via the chat facility. Happy to pass on the recommendations I got if you PM me. If you can manage to get an NHS GP to refer you on the NHS, ask for a referral to an endocrine Centre of Excellence - list here. pituitary.org.uk/app/upload.... I wish I had done this but found out about it too late!
Bertiepuss, that is really useful thanks. Do you know what the chances are of my NHS GP being able to refer me to an endo, with these results? I mean - will she be able to acknowledge or act on the tests I've already done privately? (One of them was with an NHS lab but not ordered through the NHS of course.) OR - if she wants to repeat the tests with me off meds herself, but she can only test TSH and free T4, I don't think she is going to get results that warrant a referral because both those results are in range for me. (T4 only just.)
If I know that route is a no-go, then at least I can cross it off and make a decision about private endos.
I guess I could have a phone call with her and ask. She is quite helpful within what she is able to do.
Yes, I've also had the thought about the lack of sleep leading to more disregulation. But I don't think it's the driving factor. I mean, I sometimes get a run of decent nights of sleep - but then it all returns. So if the sleep is causative or continuing things, that wouldn't happen.
I've thought about anti-depressants and if all else fails, I would try those. But with a thyroid panel looking like mine does at the moment, it doesn't make sense to try anti-depressants. I mean, I feel like the most obvious things all need to be optimised.
With HRT, actually there was a *huge* improvement in my night time symptoms when I got my estrogen up. As my Newson doctor said, it needed to be higher than for most women - between 450-650pmol. And I don't absorb very well, so needed quite a high transdermal dose to get there. Unfortunately shortly after that, I weaned off my thyroid meds. And these symptoms (or similar) returned. So I am sort of hoping that if I can actually optimise both estrogen and thyroid at the same time(!), things will be okay again.
When you say 'MRIs tend to be done after there are clear hormone disruptions' - what hormones disruptions do you mean? Beyond this wacky thyroid panel? Do you mean the other hormones, like growth hormone or IGF-1 or ACTH etc? That is why I sort of wonder if I can get those tests done privately without going via an endo. If they all come back okay, then I can accept this is just my HPA axis messed up... ?
Absolutely worth a phone call with your GP to discuss your private test results. At worst, her hands are tied and she can only offer to retest TSH, then the private route may be your only option. While you wait for your phone call with her you can make the necessary investigations on who to see both NHS and private. It may well be with such a low fT4 she will be very open to referring you, it's worth asking.
Yes, makes sense to get both oestrogen and thyroid optimised. I suggested the anti-depressants and benzo's really as a short-term 'break the cycle' alternative if you are at the point of desperation. I was; I couldn't function on any level at all, couldn't get out of bed. I do understand these meds are last resort and by the sounds of it you are able to get some sleep at some points.
Re. MRI - Yes, hormones like IGF-1, prolactin, LH, FSH etc along with the thyroid ones. This is what my NHS endo told me; the hormones are tested and a history is taken. If both those things look out of line to indicate a pituitary problem they will then consider an MRI. It may be different privately or from one trust to another. I'm sorry, I should have made it clearer it was information relayed to me so may not be general. Then there are other tests like the short synacthen test (SST) that may give further information - this it to test cortisol production so not specifically thyroid related. It's difficult because it seems not all endo's are very good at piecing everything together so it is important to know who it is you want to be referred to and not take pot-luck.
I have no idea if you can get IGF-1 or ACTH done without having an endo to order it. ACTH has to go on ice and to the lab immediately so I suspect it has to be taken in a hospital setting. The other tests like the SST take a while with several blood draws so have to be done in a hospital setting. The female hormones, cortisol and prolactin you can get your own tests for which I believe you've done already. I did all the tests I could myself via Medichecks and Randox, it didn't really get me much further. Yes, I could rule out some things but what I couldn't do was get access to the other tests. I might as well not have bothered because all the ones I paid for ended up being repeated once I saw the endo.
I actually should have said the HPT (thyroid) axis not HPA which is the adrenal one. Sorry, as I'm currently dealing with the adrenal stuff myself it's on my mind! Both are interlinked though. Hopefully someone more educated than me has already come along and given advise regarding thyroid.
Personally, I wish I had gone down the private endo route earlier, to one that is recommended but also works on the NHS so that after an initial appointment care can be transferred back. I have probably wasted a lot of time and a couple of hundred pounds on tests as I explained above, but I wanted to save money on the consult so waited for the NHS appointment to come through. It did take longer than I expected. Currently I'm awaiting further tests on the NHS but if that gets me nowhere then I will be forced to explore the private option, even if it leads to a 'you are fine, there is nothing going on with your endocrine system'.
Thanks Bertiepuss. Do you know what the cost is roughly of a private endo consult? I mean, not including any tests etc? And do you know what would happen if I was on thyroid meds with a suppressed TSH and I went to them for testing? I am just hoping they will accept these 2 tests I did and won't make me come off all meds for re-testing I would have to consider whether to do it in that case. I am hoping they will test all my other hormones and accept the 2 identical labs I had done for thyroid recently.
I have already tested female hormones, FSH, LH and prolactin and cortisol.
FSH and LH were normal.
Prolactin was above range, just. I think that means that my TRH is cranking up in an effort to get TSH to take notice - but it's not responding. Prolactin is responding, though. (Prolactin was normal a year ago when I was only starting on 15mcg of T3 and it was last tested.)
Cortisol is if anything, high. It's been either normal in the morning or just above normal on bloods. And then high at 5pm and before bed on saliva tests. However, I am basically lying in bed adrenalised at night - and insomnia itself also increases cortisol - so I'm not surprised. But it is definitely not low.
Really it is just the ACTH and the growth hormone/IGF-1 that I haven't tested. If I still need to. I did find this ACTH test privately, which is done in a hospital setting so they can freeze it immediately: privatebloodtests.co.uk/pro...
Does that look okay? It's not the 'challenge' test. What am I looking for? That it comes back within normal range? Or just that it's not low?
Estrogen, I'm on HRT and we were really trying to get my estrogen up and we finally (over) succeeded on the last test as it was 890pmol - so I've now reduced it. It should be around 650pmol now, which is the top of the range we were aiming for. I might be one of the very few women who needs it higher but I first need to get other things optimised and see what symptoms I'm left with.
(That is one of the reason I don't think I can just sit here waiting for my thyroid hormones to spontaneously recover when lots of people tell me they won't now. I can't investigate other causes for the insomnia etc when I'm sitting here with a thyroid panel like this.)
Right, brain back online somewhat! I don't know the cost of a private endo appointment but would make a guess at £250-350, that's what I have found private consultants in other disciplines generally charge for a first consult.
Sorry, can't answer whether they will accept your tests or not. They may well consider them in the bigger picture but I suspect they will want a fresh set of labs. As to whether they would want you off meds, no idea, sorry.
ACTH - as far as I understand (just from my own research so may be wrong) it needs to be taken and interpreted alongside a blood cortisol at 8- 9am. It is the relationship of the two together that counts. However, if you are getting high cortisol measurements I'm not sure if the ACTH is relevant. I know it's relevant when looking at low cortisol problems to see if the pituitary is capable of producing enough stimulation to the adrenal glands or that it's producing loads but the adrenal glands are not capable of responding due to damage/atrophy.
I'll be honest and say I don't know the answer to your other ACTH questions as I have the opposite problem of low cortisol. The SST challenge test is specifically for low cortisol. As your cortisol is either normal or high on bloods in the morning then your adrenals are capable of working and are getting the stimulation of ACTH. I'm not surprised your cortisol is high if you are not getting the proper rest at night. I don't really see that getting the private ACTH you linked to will actually give you any useful information on it's own.
It sounds like you are keen to get the thyroid levels sorted to see if optimising that, and your oestrogen levels which are now good, brings relief. That makes sense. The decision is what route you take to get the right help.
As I see it, and if it was me (others may have come up with other options), I would think about it this way with the following routes -
1. You could continue with your current thyroid doctor (do you trust them fully?) trying to get the right dose of thyroid meds, which as others have said, gradual increases and remeasuring are needed, which means you have to have patience to let this stabilise over a few months. The result is you'll be optimising thyroid alongside your already optimised oestrogen and hopefully this will do the trick.
2. Make an appointment to speak with your NHS GP. In the meantime research which endo you would like to see on the NHS using the Pituitary foundation list I sent you to find your nearest Centre of Excellence. Then when you speak with your GP you will be ready to ask for a referral. If she cannot do anything further for you then you can explore point 3. below. You will potentially wait 9 months to get an NHS appointment so you could continue with your private thyroid specialist in the meantime while you wait. If in that time you feel better you can then cancel the appointment.
3. Find a private endo that also works on the NHS. There is a list available from Thyroid UK, I think you have to email them to ask for it. Once you have researched who you might want to see you can make a separate post asking for recommendations via private message. Names of specific endos can be asked about so if you find one on the list you like the look of you could make a post saying something like this - 'asking if anyone has seen and can recommend endo xxxx' but replies have to be sent by private message as details cannot be discussed openly. As I said, please PM me and I can give you the name I was recommended myself (not seen him but several people have) and who I will go and see if I get no further with the NHS.
The best of luck, I hope you can get things sorted out. It requires patience alongside trying to keep a calm mind 🤗
The hypnic jerks and lack of sleep occurred for me when I was untreated for 19 years after a sub-total thyroidectomy for Graves hyperthyroidism. Once treated my Cortisol and FT3 were in a much better place and these symptoms receded.
They did not miss my Hyperthyroidism (Graves). In fact, this was found by a very caring Doctor within three weeks of testing. I was very quickly treated for Graves. The 19 years without treatment was after my eventual Sub-Total Thyroidectomy at 14 weeks pregnant. After the birth of my daughter (please read my profile) I was then not treated for 19 years. I guess my then useless Doctor and Hospital were waiting for my TSH to reach 10! Once, eventually, treated I improved on a good Levothyroxine in about 3 months.
There only seems to be Diabetes Specialists around at the moment. Thyroid Specialists are few and far between. Teaching of Doctors is so poor nowadays, and medication no better in NHS.
No, not really. I've tried none, 100, 200, 300 and 400mg of it. It does sometimes make me a bit woozy but it's not enough if I've got all this going on. At the moment I use none for the first 5 days to allow a bleed, then I take 300mg from day 5 to 16 and then 400mg day 16 onwards.
Did you try taking it early evening to give sedative effect time to kick in.For 2 years I took it as I jumped in bed and being a night owl that would be gone midnight. I was always groggy the next morning. Then one day took it at 7pm.. by 9pm i had to go bed and fell straight asleep. 2 years of sleep wasted
Just thought I'd mention just in case same could apply to you
Yes, it's pretty common in the US and other countries. I increase in the second half of the cycle. It's like doing it sequentially except instead of none and then some, I always have some and then increase. I have a history of endometriosis and if I take it sequentially I get endo pains back due to not taking any for the first half of the month - but I can't take it continuously yet either, as I am in peri and would bleed randomly.
Have you tried continuously before? I was started on hrt continuously 7 years ago while still having periods. My periods stopped within a couple of months and all the pms and malarkey that when with them. I know erratic bleeding can happen but also your periods can stop too.
Yes, tried continuously but then I just bleed randomly which has the potential to worry doctors. At the moment I get a period every 20 days, sometimes every 18, even on 400mg of progesterone. They have got a lot closer together. They are light periods with dark blood. That can just be part of peri although, given my higher estradiol levels, I wish there was a reliable way to measure serum progesterone in the UK - there is in the US, with the LC MS something test - but the progesterone tests in the UK include metabolites of oral progesterone produced in the liver and give a falsely high result if you're on HRT. (Accurate if measuring progesterone and not on HRT.) Part of the reason I went up to 400mg is I just wanted to be sure I was getting enough, given that I am on 200mcg patches plus 3 pumps of gel at the moment. (Reduced that from 6 pumps of gel - as I was at 890pmol estradiol at last test. We are aiming for around 650pmol. Prior to this I was at 330pmol at the highest and there was a big improvement when I increased from that.)
Really I need to get thyroid okay and into range and then see how I feel with estradiol up here as well, because I was increasing the estradiol as I was weaning off the thyroid meds so all this gets a bit messy - low levels of either can cause symptoms.
I don't have much to add except maybe slow down with the chopping and changing. Try to address one thing at a time. Changing too much all at once will just confuse matters as you won't know what's working and what's not.
Good luck and keep asking questions here. The members are fab at helping you get to the bottom of things.🙂
Cerascreen do a saliva Estrogen and Progesterone test. I don't know if this test would give you a more reliable reading or not. If you email them and ask I think they will give you a clear indication as to whether it suits your purposes or not. They answer their emails quickly. The tests go to Germany.
The European Thyroid Association produced guidelines in 2018 re.Central Hypo. (PERSANI) I think they say that if Ft4 has dropped 20% or more, from a previous reading, even if still in range, that this is indicative of a Central problem with the Pituitary or the Hypothalamus. Can't remember if this is when on thyroid medication or without it. If this applies to you, you may be successful being referred to an NHS Endo Centre of Excellence, on the basis of this. Have a read , it is 34 recommendations.
Thanks for that info on central hypo. Yes, my T4 was always either in the top third of range or (at lowest) mid-range when off thyroid meds. Now it is below range (total) or only just in (by 0.3).
I'm thinking about how to talk with my GP about this (and whether I should). It is difficult because I am currently on a very high estrogen dose (200mcg patch plus 3-4 pumps of gel) and my estradiol levels at last test were 893pmol - but I appear to need this for symptom-control during peri. (I might just have had a random estrogen spike from my ovaries for that last test so I'm going to test again in the new year.)
I try to do all my sex hormone testing privately and see Newson Health privately for meno stuff, but my NHS GP prescribes the meds. There is no way I could afford this dose of estrogen privately. Which is all to say... I worry about my NHS GP wanting to run bloods, finding a high estradiol level and reducing my HRT. My thyroid results are on the same labs as this high estradiol level and now I've gone back on thyroid meds, I can't get more 'off meds' labs to show her without the sex hormones on.
It's all a bit crazy. But also my other hormones - FSH, LH, prolactin, cortisol - all seem to be responding as they should. It's just TSH which isn't...
If referred to an NHS Endo they would test Estrogen. On the bright side, I think it is Gynaecology that seems to deal with HRT in my health board, so if Endo didn't like your estrogen levels it might be Gynaecology you would need to be referred to. That might take a couple of years! Your G.P. might be happy to wait to see what they say about your estrogen without reducing your dose as long as you are not currently over-range. OR if Newson clinic are recommending a dose and G.P. has accepted prescribing it, they might still do so. Only you can really judge if your G.P. will continue to prescribe.
You have had some excellent advice from various forum members and I hope it can make a difference , for the better, for you going forwards. It's so difficult and you have been having a terrible time. Hope you improve soon.
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I would have to consider whether to do it in that case. I am hoping they will test all my other hormones and accept the 2 identical labs I had done for thyroid recently.
So disappointed about recent test results
Central hypothyroidism?
Effects of thyroid medication, T4/T3 on exhausted adrenal - resulting in RT3 and Thyroid binding globulin
Request for Article: Subclinical Central Hypothyroidism 
is this subclinical hypothyroidism? 
