Hi, I was diagnosed with graves, then ted, treated with carbimazole for 2yrs. Had 2x eyelid surgeries and orbital decompression surgery and then I had a thyroidectomy after 3 opinions. Took 125mg Levo but felt unwell so tried ndt which made me feel better in myself but I still had painful muscles, no energy and palpitations. I've now gone back to 100mg Levo and 10mg t3. I’ve only been on it for a week but I feel absolutely awful- so tired, fatigued, no energy, headache, muscle pain, hollow feeling/pain under ribs, palpitations, can’t wake up, brain fog. I can’t get out of bed. I’ve had bloods taken and everything looks ok apart from raised ESR. My t4 is 15 and my t3 is 5.2. I feel like there is something really wrong!
Does anyone know a really good Endo please? Thanks x
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Can you give the ranges, please? Results without ranges are meaningless because they vary from lab to lab. But could be that you're just under-medicated.
you need to be on constant unchanging dose and brand Levo and T3 for minimum 6-8 weeks before testing
which brand Levo
Which brand T3
Approx how much do you weigh in kilo
what vitamin supplements are you taking
When were vitamin D, folate, ferritin and B12 last tested
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
T3 ….day before test split T3 as 2 or 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test
Is this how you did your test
Please add ranges on Ft4 and Ft3
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Monitor My Health (NHS private test service) offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg - with T3 - the active hormone said to be around 4 x more powerful than T4.
T4 is a pro-hormone and needs to be converted in the body into T3 and for optimal conversion of T4 into T3 we do need optimal levels of ferritin, folate, B12 and vitamin D :
I have Graves and had RAI thyroid ablation back in 2005 and developed TED a few years later and told ' my eye issues ' were not bad enough for surgery !! and roll on another 5 years more ill than I had ever been in all my life.
I was refused both T3 and NDT on the NHS in 2018 so started self medicating and am much improved taking NDT though it has taken me a couple of years of building back up my core strength vitamins and minerals and a year orso on NDT to recover as much of my health and well being as I can -
I'm not 100% though believe that more to do with the consequences of ingesting RAI - which is a toxic substance. known to be taken up to a lesser extent. by other glands and organs in the body.
As well as results/ ranges of thyroid blood test results - can you please share doses and time lines as to the medications being taken at the time -
It is essential that you are dosed and monitored on your T3 / T4 readings and not a TSH /T4 reading - which ever synthetic thyroid hormone treatment replacement you are taking and on NDT you dose to the relief of symptoms and not a TSH nor a T4 - but to the relief of symptoms and your T3 reading.
Graves is a poorly understood and badly treated Auto Immune disease and I found the psychological impact of not recognising myself in a mirror devastating, let alone and mental, emotional, and physical challenges faced - just trying and get well again.
I found the most well rounded of all I researched on Graves was that of Elaine Moore - books and website - elaine-moore.com
Thyroid UK - the charity who supports this forum hold a list of recommended thyroid / endo specialists - NHS / Private - just email thyroiduk.org asking for the Patient recommended list of thyroid specialists / consultants etc -
We are not allowed to openly recommend any medical professional on the forum so your replies will be by Private message - which is a one to one screen that is accessed through the Chat icon - ( looks like a paper plane ) which sits alongside the Profile- My hub- Post- Alert and Menu sections - top right on this screen.
If wanting a face to face appointment it might make sense to mention where you are - just press the More button - bottom right - on this first post - go into Edit - and add the area you are looking to be seen in - and then close this first post again by pressing Edit response.
hi, thank you so much for taking the time to reply.
I’m taking mercury/pharma Levo and Roseway t3. I’m taking 100mg Levo at 5pm and 5mg t3 at 7am and 12pm.
I’m taking vit c, d complete, omega 3, adrenal , amino acids, probiotic, magnesium malate and estrogen gel (2 pumps)at 9am. And estrogen gel(1 pump) progesterone, b complete and magnesium citrate before bed.
My functional health doctor didn’t tell be to fast or stop my tablets before the bloods! I’ll defo do that next time, thank you!
My serum folate was 17.8 (2.4-17.5)
T4 15 (11-22)
T3 5.2 (3.1-6.8)
Esr 24 (3-15)
My ferritin was within range and I haven’t had my vitamin d tested. I’ll get on to that.
I was refused ndt and t3 on the nhs too so I found a functional doc that would. Although she just seems to prescribe what I ask for, which is good, but doesn’t seem to help with advice! So I tell her how I’m feeling and she says to try something new.
I’m not sure I can stay in bed for 6-8 weeks feeling like this! I’ve never felt so ill. I’m 47 and roughly 80kgs. Thanks to all who read this! x
When replying to a forum member you must make sure you reply within their comments by pressing their Reply Icon - and then their name comes up as you type and they receive a message to come back to reread a previous post.
Anyway - I just found this by another forum member alerting me - so thank you Milkyway88 and I will link in SlowDragon & greygoose - for you -
we can all read what you write, but need to be alerted to come back after first replying as the pressure of new questions and answering new posts can divert us elsewhere - and be somewhat overwhelming:
Can I please ask - what has been suggested regarding your over range ESR - I understand this to be an inflammation marker and shows your body under considerable upset / stress in trying to function- which was already evident from what you had written - and being this unwell will automatically down regulate your ability to process and utilise the thyroid hormones well as your body is fighting this inflammation.
Apart from having to maintain optimal vitamins and minerals - conversion of thyroid hormones can also be down regulated by inflammation, any physiological stress ( emotional or physical ) depression, dieting and ageing :
So - how long have you been on this T3/T4 synthetic combo - we generally feel best when the T3 and T4 are up towards around 70 % through the ranges -
Currently your T3 is at around 57% with your T4 tracking behind at around 36% :
So your T4 dose looks to be too low - and if as you say - you took your T4 prior to the blood test -this result could be a false high - and your actual T4 level much lower - what time lapse was there from taking the T4 to the blood draw ?
Are you aware you have any absorption or stomach issues - and have you been tested for other AI diseases such as celiac and pernicious anemia ?
So I take t4 at 5pm and I had the blood test at 8.20am the next morning.
I’m unaware of any absorption problems but I do often have this stomach pain/feeling that comes with a headache. I also have ringing in my ears at the moment.
And no I haven’t been tested for other conditions, I’ll get on to that asap! Thanks so much x
Ok then - so around 15 hours - so ignore my comment about a false low T4 reading - but still advisable to rule out other AI diseases as they tend to run together in some people.
Ringing in the ears could by some form of tinnitus and a known side effect of hypothyroidism and may well disappear once optimally medicated.
Having read a post or reply, I've noticed that you might wish to correct your post or reply. For example, you might have followed up with a reply to correct a mistake.
This is not to say you have done anything wrong. This is meant to help you by pointing out this option, and help you to do so, not to criticise.
There is no need to reply to this! If it was helpful, ticking the "Like" button lets me know.
I'm on levo and if my levels are "in range" I feel awful. I'm on 75mcg of levo and showing as under range, but feel so much better for it. I had RAI 6 years ago, im currently the best I've felt in all that time. I have read and heard that once you no longer have a thyroid, levels don't actually mean much, you should go by how you feel.
You had a thyroidectomy in August just gone and prescribed T4 medication - Levothyroxine and presume discharged from endocrinology once settled on T4 only -
Do you have your discharge blood test results from the endocrinology department at the hospital ? If so - can you please share the results and ranges with forum members.
You didn't feel good on T4 only and switched to NDT - felt improved - but not 100% - and in this last week orso switched to 10mcg T3 + 100 mcg T4.
How long were you taking the NDT and can you share your last NDT - T3/T4 blood test result with forum members ?
So you can't assess this new synthetic treatment regime yet - as we need to wait around 6- 8 weeks for any thyroid hormone treatment option to build in the body and express in the blood test results.
So I'm guessing your symptoms are from stopping the NDT and switching to the T3/T4 synthetic combo -
As you were feeling somewhat better on the NDT - what dose were you taking - and did you try increasing this dose first and if so - what happened ?
As for these blood tests as detailed - I'm guessing they are from taking NDT which explains the low T4 reading
Your thyroidectomy was just some 4 months ago - and I think you have been changing treatment options much too soon and not giving your body enough time to recover and adjust from the thyroidectomy.
No thyroid hormone replacement option works within a month - all are slow builds -with small increases up or down in thyroid hormones - and interim blood tests every 6-8 weeks for any change in dose - which I'm guessing has not happened - as you are now trying your 3rd thyroid hormone treatment option in as many months.
Hi, I didn’t give them enough time, you’re right. The doctor I saw didn’t say this though! I had my thyroid out on the 2nd August and saw her on 10th September and she said maybe try ndt so I took her advice! Then when I said I still felt unwell after increasing the ndt she said to try t4/t3.
So I started on Levo 125mcg
T4 23 (11-22) T3 6.2(3.1-6.8) 3rd sept
Then went down Levo 112mcg
Felt hungover/ill constantly, especially in the mornings and had no energy
Then went on ERFA 1 grain
Felt better in the mornings- no hangover/headache but still had no energy
T4 17.1(11-22) T3 5.1(3.1-6.8) 19th sept
Then ERFA 1.5 grains
T4 14(11-22) gp wouldn’t test T3 10th oct
Then ERFA 2 grains
Started having muscle pain that was getting worse
T4 12.6(11.9-21.6) T3 3.15(3.1-6.8) 30th oct
Then ERFA 2.5 grains
T4 17(11-22) 12th nov
Then ERFA 2 grains again
Still no energy, severe muscle pain, palpitations
T4 12.6(11.9-21.6) T3 5.7(3.1-6.8) 26th nov
Now on Levo 100mcg + Lio 10mcg
Now I’m worse yet- Still severe muscle pain, feel very unwell, zero energy, fatigue, stomach pain/hollowness headache, palpitations, itchy.
Usually after a thyroidectomy you are seen by the hospital endocrinology team and monitored on T4 monotherapy until such time - ( probably after the first set of blood tests 6-8 weeks after surgery ) and when your T3 and T4 are seen as acceptable you are discharged out into primary care with a letter detailing your TSH - T3/T4 blood test results for your doctor to maintain.
It reads that this did not happen - and whoever this doctor is they have not advised you well -
All brands of Natural Desiccated Thyroid contain trace elements of T1. T2 and calcitonin + a measure of T3 and a measure of T4 :
1 grain Efra contains 8mcg T3 + 35 mcg T4 :
so when at 2 grains = 16 mcg T3 + 70 mcg T4 -
and 2+1/2 grains = 20 mcg T3 + 87.50 mcg T4 :
You are now taking - 10 mcg T3 + 100 mcg T4 :
T3 is said to be around 4 x more powerful than T4 :
I don't think you have been on any dose long enough to have had much effect - other than totally confuse your brain and body -
Your first set of results on September 4th on T4 x 125mcg looked good - how were you feeling then - do you remember - within the first month of having had surgery ?
Your T4 was just a little o/range - but minimal - and your dose dropped to 112.50 mcg and then it all seems to have gone haywire -
and actually the dose of T3/T4 you have now been put on is quite similar to having been on 125 mcg T4.
I think it best now to stay where you are, on the synthetics, and wait it out for the next 4 weeks and hopefully - your symptoms will settle and you will feel more comfortable.
Just for reference the T4 takes around 6-8 weeks to fully leave your body - so in that time frame it is suggested that you slowly build up your dose of NDT in 1/4 grains :
So - for a smooth transition - from T4 only to NDT - as the T4 decreases in your body and blood stream - you increase the NDT by 1/4 grains - to the relief of symptoms - and if you get to 2 grains - you hold this dose for 6-8 weeks letting it bed into your body and then you run a blood test to see what is going on and to compare with your bench mark readings.
I also monitored myself on the physical symptoms of blood pressure, pulse and body temperature AM & PM and found that the first 2 remained stable and my temperature rose from 35.4 to 36.6 where it sits today some 6 years on.
I only managed to get to 1+ 3/4 grains and found I developed symptoms of anxiousness and just not as good as the week before - so dropped down o 1 + 1/2 grains where I had felt better and stayed on this lower dose for 8 weeks - letting it bed - and then ran a blood test - to find my T3 was then 110% through its range but my T4 at just 25% - but I felt ok - and that was ' job done ' for me.
No thyroid hormone replacement works well until your core strength vitamins and minerals are optimal - you need to get ferritin, folate, B12 and vitamin D checked out and it is not about being in the ranges somewhere, anywhere, but being optimal and where you feel better, hopefully, within the ranges.
It does, thank you so much! I had my thyroidectomy privately and saw the surgeon a week after surgery when he put my Levo dose up from 100-125mcg. Then I was put back in the care of my gp, who knows nothing about Thyroids(not that I blame them!) so then I found an intergrated doctor because I felt ill on the Levo and she suggested the ndt. She told me to take 1 grain instead of the Levo! I’ll give this a go for a few more weeks like you said. Thanks again x
Rest up - T4 is a fussy hormone and needs to be taken on an empty stomach with some water and you should wait around a good hour before eating or drinking anything other than water.
Are you splitting your T3 into AM and PmM by 5 mcg - or taking as 10 mcg with the T4.
You didn't appear to have a conversion problem when on 125 mcg T4 in your first set of blood test results - and may well do well on T4 monotherapy - and T4 only medication is the easiest option to manage - might be worth thinking about - though hate suggesting another change in routine.
Are you referring to the period straight after surgery - that is quite normal - it's a slow build and the T4 needs to build up in your body before it starts to work well and convert into T3.
Well of course - you're not going to be told you'll likely feel like ---- for a couple of months !!!
He is a skilled operative in his field of surgery and prefers his patients to be under anaesthetic - and as a surgeon more interested in his skill set with scalpels than your life without a thyroid.
It’s all so hard to grasp! I read on here that someone who had their thyroid out does best on 75mcg even thought their results are very low- they explained that they had read somewhere that if you have no thyroid the bloods don’t mean much and that it’s all about symptoms. So my head explodes and I don’t know whether to go up or down with t4 and t3. X
Without a thyroid it's much more about your T3/T4 readings -
with the TSH being pretty much obsolete as your HPT axis - the Hypothalamus - Pituitary - Thyroid feedback on which the TSH relies on as working is now open ended / broken - as there is no thyroid in situ to complete this feedback loop - making the TSH reading very unreliable -though most doctors do not seem to realise this fact.
We are all different as to what level of T3/T4 we need to kick start our metabolism and give us back our health and well being.
As previously detailed it is said that a fully functioning working thyroid would be supporting us daily with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg.
However it is not that simple as we don't know where our T3 and T4 were, when we were well to dose back to -
and it's a balancing act between T3/T4 thyroid hormones as to where you feel at your best - which can take time - my final dose of NDT appears to breakdown to 13.50 T3 + 57mcg T4 ?
Just keep reading around - maybe go back to that other post and read the forum members other posts and how they came to be on this dose that suits them - just press on the their profile which sits alongside their name on any post they make or reply to:
Yes you will - dealing with Graves and all you have already been through - you would have thought was enough -
but now you need to gain a proficiency badge in thyroid health as well for when you haven't a thyroid and living with this poorly understood auto immune disease and all it can throw at you.
It is hard to grasp because your thyroid hormones have been all over the place and you are likely dealing with brain fog and reduced cognitive function - just rest up - stop over thinking - and just put on your favourite music and turn off the worrying.
I know - easier said than done - but try and divert your brain - try a jigsaw or painting by numbers :
You don't have to finish it in a day - sometimes I only find a couple of pieces but it just switches my brain off for a bit and I feel better for that - I also shouldn't stay on this forum late in the day as otherwise I don't sleep well - and actually should turn off now and what ---- TV for a few hours.
You now need to wait for any dose to take effect and hopefully your symptoms will be alleviated and you will start feeling more comfortable - and you deserve to have a doctor with some thyroid knowledge to take the reins from you, as it so early in your recovery.
There is no quick fix and its not like popping a paracetamol for a headache and finding immediate relief - it all takes time - you have lost a major gland - without which you can't survive - and why it is so important to find your optimal level of T3/T4 and maintain the vitamin and mineral co-factors necessary to keep you as well as possible.
Did you contact Thyroid uk for the list of patient recommended thyroid doctors NHS & Private ?
Apart from Elaine Moore's first book Graves Disease - A Practical Guide - and her now extensive website - elaine-moore.com -
I found the following book - written by the late doctor Barry Durrant- Peatfield a very useful manual on all body physiology and he wrote the book for patients to enable them better to advocate for themselves - and Your Thyroid and How To Keep It Healthy might sound as thiough it doesn't apply to you now, but it does, and details how important the thyroid is as the controller of all the body's systems and the knock on effects when hypothyroid and not optimally medicated.
Thank you for those recommendations, I’ll have read. We all deserve that, I can’t believe what goes on in the medical field and I certainly won’t be trusting of any of them again! X
I think had you been in the NHS system for your surgery their duty of care would have extended into the Endocrinology Department and you will have spent a period of time working with an endo in finding your best dose of T4 - thyroid hormone replacement -
T4 is routinely the first, and some times only treatment option prescribed on the NHS and once settled on a dose the endo believed ' right for you ' - your primary care doctor would have taken over the job to ' simply aim to maintain ' your health and well being.
When ill - there is very little, if any time to start researching or understanding stuff - and we all go the doctor which is inherent in our culture -
Graves is a poorly understood and badly treated AI disease - and why Elaine Moore ( a medical researcher ) started her research back towards the end of the last century -
as she too has Graves but went through RAI thyroid ablation - and found no help and is now a well respected, world leading writer/researcher on all things Graves / Auto Immune- and treatment options.
In my opinion with Graves the symptoms and AT drugs can rob you of your mental, psychological, emotional and physical being - and we tend to trust people in white coats when ill and looking for help.
Please stop beating yourself up, and be kind to yourself, it's not your fault.
Yes, you’re right. I wanted to feel better asap and also wanted to feel confident in who was operating on me so I went private but in hindsight I should have waited. Thank you for your kind words. X
I can't unfortunately advise on the possible causes of your issues (as I don't have the experience) but I just wondered whether you would now regret your decision to have a thyroidectomy - although it still maybe early days - I don't how long since your surgery - and would you have now opted to stay on the AT medication instead?
It's just I'm in a similar situation with Graves since 2016 (3rd episode) and now on block & replace for over 17 months and always generally unwell with many symptoms and difficult to function. Same as you I have decide whether to opt for treatment - may have to be RAI as surgery might not be a good option for me though.
hi! Right now I wish I’d never had the thyroidectomy. I had it done on August 2nd and I’ve struggled ever since- now being the worst I’ve felt. Maybe in a few months/years I won’t feel the same but I definitely feel worse than before I had it!
I think if I were you I’d try the aip diet first maybe? I’m about to start it. I think with hyperthyroidism you can sometimes become healthy with just diet whereas without a thyroid there’s always the added medication to add into the mix!
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