I would be interested on opinions on my Thyroid function test, this one taken in May 2022
I do not have a thyroid gland, removed as a child.
Serum free T4 level 13.5 pmol/L
Serum TSH level 0.1 mu/L
I take 100 mcg of thyroxine daily, and am constantly told by doctors this is too much. I used to be on a lot more and was well.
Thanks
Greenhills
Can you please add reference ranges, we can't interpret your FT4 result without. Ranges vary from lab to lab so we need the ranges that come with your results.
Was FT3 tested? Just testing TSH and FT4 doesn't give a full picture of thyroid status, FT3 is the most important test as it's T3 that is the active hormone that every cell in our body needs and unfortunately doctors don't seem to know this. They just look at TSH to decide if you are overmedicated but TSH is not a thyroid hormone, it's a pituitary hormone which is helpful for diagnosis but not much use once diagnosed and on thyroid hormone replacement.
Sorry yes here they are : Serum free T4 range 7.0 -17.0 and Serum TSH level range 0.20 - 4.50
So your FT4 is 65% through range which isn't too bad. The aim of a treated hypo patient, generally, is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their ranges, if that is where you feel well.
With FT4 at 65% your FT3 is unlikely to be any higher than that within it's range, possibly lower, so there is no way you are overmedicated and you don't need your dose of Levo reduced.
If your GP insists then ask for FT3 to be tested at the same time as FT4 and TSH and refuse to reduce unless FT3 is over range.
Thanks for that. I have a tel appnt with GP tomorrow and so far I have insisted I remain on 100 mcg, even with the Endo's who say its too much. I was so well on a higher dose. I shall ask for the relevant tests that you have indicated. Interestingly back in March I was in local A+E after being really unwell at home and the doctor there highlighted that he thought thyroxine dose was too low, then he was over-ridden by another doctor who said its not.
With no thyroid, unless extremely petite likely to need at least 100mcg levothyroxine …..with Ft4 only 65% through range you are quite likely in need of dose INCREASE in levothyroxine
Suggest you wear a Fitbit or Apple Watch or equivalent to record resting heart rate and activity levels
Approx how much do you weigh in kilo
You could try splitting your levothyroxine dose ….taking 50mcg waking and 50mcg at bedtime (literally cut tablet in half)
This might increase TSH and possibly improve conversion rate
But suggest you get full thyroid testing first …..before considering changing anything
Always test thyroid levels early morning and last dose levothyroxine 24 hours before test
So if you do eventually start splitting dose…..just on day before test take whole dose in morning
At the thyroid clinic yesterday and the Consultant once again says I have to reduce my dose to 75 mcg from 100 mcg, Ive been resisting for a long time, but feel have to at least do it for a few months to see if any difference in the way I feel. Anyway I managed to get these results which were done at that hospital in September, which I would be glad if you could give your opinion on them, on whether reduction is needed in your view? ... They took bloods yesterday so in due course I will have the results of those. Thank you..
Free T3 5.4
Free T4 21.1
TSH 0.05
Can you add the reference ranges please greenhills
If the ranges are the same as before (7-17 for FT4) then it begs the question why your FT4 is so high with the September test and much lower with the May test.
Do you always do the test under the exact same circumstances, ie
* No later than 9am
* Nothing but water before the test
* Last dose of Levo 24 hours before the test
* No biotin, B Complex or any supplement containing biotin for 3-7 days before the test.
Ok yes sorry... FT3 range 3.5 - 6.5
FT4 range 10.0 - 22.0
TSH range 0.55 - 4.78
No my tests are rarely done before 9 am, because no one has ever said to do that & secondly my Endo appointments are always after 9 am. Yesterdays bloods were done at lunchtime, but I hadnt taken any meds, because I forgot to take them before we set off! No one has ever said to only have water before tests or to leave off the meds for 24 hours, although I would feel not good if did that with having no thyroid. Am not taking B complex regularly at the mo. The Endo was getting really irritated with me yesterday with all my questions on thyroid and cortisol, as to me questioning why 14 years down the line Im still not feeling good. Recently in primary care Ive had lots of blood tests for other things because was feeling so unwell in November and thanks to a thorough GP, ie bloods and urines for possible cancers, even a CT scan of the neck down to pelvis and nothing showing on any result. Thank god. GP has also referred me to Cardiology for a check up on that too.
Just testing TSH and Ft4 is completely inadequate
Do you always get same brand levothyroxine at each prescription
Do you normally take levothyroxine waking or bedtime
Always test thyroid levels early morning, ideally just before 9am and last dose levothyroxine 24 hours before test
When were vitamin D, folate, B12 and ferritin levels last tested
What vitamin supplements are you currently taking
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially if left under medicated
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Please add any vitamin results
Or come back with new post once you get Full thyroid and vitamin testing results
Many many people have low or suppressed TSH when on levothyroxine. It does NOT necessarily mean your over medicated
Most important results are ALWAYS FT3 ….followed by Ft4
Most people when adequately treated will have Ft3 at least 50-70% through range
Thanks for your reply. Yes I always have the same brand of meds and reject them if they try to mix and match and I insist am given all the same. (MercuryPharma). I take my meds at intervals through the day, morning, mid afternoon and early evening. Vit D is tested regularly as its been low in the past, lately its said to be acceptable level. B12 has been tested recently twice along with folate, and the result says not deficient. Im not taking any vits at this present moment as I never really feel any better when I do. I had another thyroid function test done at the beginning of August so I will ask for copy of the results of those. I will look back at my Ft3 test results. The other fly in the ointment is mild/borderline ACTH deficiency diagnosed in 2015. Just another question - is it possible for you to find me laboratory that would test my thyroid status via the PBI test (Protein-bound iodine test) as looking back to letters when I had my thyroidectomy, my tests and meds dosage were always based on this, and I was very well in those years. I shall look out the letters and the dosage and post to you.
Vit D is tested regularly as its been low in the past, lately its said to be acceptable level. B12 has been tested recently twice along with folate, and the result says not deficient.
You are legally entitled to copies of your actual results
“Within range” is not necessarily optimal
Optimal vitamin levels are
Vitamin D at least over 80nmol and around 100nmol maybe better
Serum B12 at least over 500
Active B12 at least over 70
Folate and ferritin at least half way through range
Conversion of Ft4 to Ft3 gets worse as we get older, especially around or after menopause
Good conversion needs good vitamin levels
greenhills, this doctor is new to you? You said you've been on a higher dose of levo. Why is this one not at least looking at what was satisfactory before. He is merely looking at your TSH result and jumping to a wrong conclusion. Even your FT4 is only half the picture. We don't know what the active FT3 level is. We don't know how much of your T4 is converting to FT3. We don't how much is becoming reverse T3. Did he check your reflex? In other words he doesn't know much about your condition. Put up a fight and insist on more testing. You are missing one of the most important glands in your body. Your adrenal glands will have to make up what is lacking from your thyroid for your survival. Check out John Bergman's videos on You Tube. He explains the process well.
Thanks Heloise for your post and important points you make. The doctor I speak to tomorrow is new to the surgery. She seemed keen at last conversation but we will see. Maybe Im wrong, but the one singular thing that's happened since ive felt unwell is the lowering of the meds. I keep being told its chronic fatigue syndrome and I dont really agree. My next endo appnt is next summer ! Yes my reflexes were always checked many moons ago by the excellent doctor who cared for me before and after my thyroidectomy.
You are not wrong. It's ridiculous what doctors are getting away with. I'm in the U.S. and have given up on doctors and endos. Don't allow them to ruin your health. Follow your instincts. Thyroid hormone is in every cell of your body and is essential for smooth muscle.
Smooth muscle covers a lot of your body. Low thyroid causes so many symptoms and they give them names as if they are separate conditions. No.
They are very afraid of that .01 TSH simply because they assume you are over dosing but your FT4 already tells you, you are not.
How did you lose your thyroid at such a young age but you don't need to answer.
Well I think Im at that point where you want to give up as you get talked down at the very mention of upping the med dose. And they dont want to know about external medics' opinions if its not NHS. Now Ive had covid they jump on that, but I had a blood test for long covid and it was negative. My thyroid was removed because it had virtually stopped working by the time I was 9 years old. I wasnt good at all by then but It took all those years for a diagnosis. There were nodules, but not cancerous, but it was decided to remove the gland, I suppose, just in case. It was very complex thing and I went to many hospitals before it was decided I go to Scotland to be under the care of a brilliant Professor. So post op, the diagnosis was 'Inborn defect of thyroid hormone synthesis - impaired coupling of iodo-tyrosines' ...
You must have suffered during those years. They know much more about that now but I doubt that the medical profession keeps up with the research. I wonder if your final diagnosis has an effect on how you metabolize T4. Some of us are strictly on T3 alone and avoid that problem.
I've been here for nine years and your story has been told hundreds of times. Refusal to do thorough testing, refusal to find your customized dosing; it's just a one size fits all attitude. Don't give up, there are ways to work around the problem and you can feel great again.
There was an administrator here named "Clutter" who also had her thyroid removed and recommended taking both T4 AND T3 in those cases (just like your own gland would). There is a lot of agreement for that. Why not try for that although the NHS is resistant. Many here are obtaining T3 themselves and if you have no other choice it's an option. People would have to private message the information.
Let us know how your appointment went.
Greenhills you could argue that as you have no thyroid why would TSH be relevant. Why would the body try to stimulate a non existent organ? When they removed your thyroid the natural feedback loop which regulated the thyroid was broken so TSH became an unreliable measure.
You need to get TSH, Ft4 and Ft3 tested together
Cheapest is via Monitor My Health
£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
NHS easy postal kit vitamin D test £29 via
Thousands of members have similar fight over dose…..TSH is irrelevant …Most important result is Ft3
So first step is to get tested before considering booking any consultation with endocrinologist
You likely need INCREASE in levothyroxine or You may need addition on T3 prescribed
Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors who will prescribe T3
tukadmin@thyroiduk.org
So just had the telephone appnt with the GP and once again am told nothing wrong with thyroid function and that I need to reduce to 75 mcg. She didnt want to know any other opinion. Said that I need to manage my ill feelings eg 'chronic fatigue syndrome' and use paracetamol, ice gels etc for pains and get physiotherapy. She was not willing to do any bloods as adamant all results are ok. So once again I question myself that Im on the wrong track. I will request copy of the function tests for Aug 2022 and post on here for further input. I have just found a copy letter from July 1998 where I am complaining of feeling ill after my meds were reduced DOWN to 150 mcg - a test taken at that time states Thyroxine was 119 and TSH 0.07.
So get full thyroid and vitamin testing done yourself privately BEFORE considering reducing dose
Come back with new post once you get results
Whole load of references re low TSH
healthunlocked.com/thyroidu...
You will need to go over GP to an endocrinologist
Vast majority of endocrinologists are diabetes specialists and useless for thyroid
Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors
tukadmin@thyroiduk.org
Ok thanks for all the input, will look at the private testing. I just found my latest copy letter from the Endo for July 2022. It states my TSH is suppressed at 0.06 and 'potentially dangerous at my age.' No mention of any T3 tests, and my synacthen tests it says been 'normal on a couple of occasions' , its just not good enough and the letter is peppered with mistakes.
TSH is NOT a thyroid hormone….it’s message from pituitary to tell thyroid to work
You have no thyroid….
Most important results are ALWAYS Ft3 and Ft4
Currently your Ft4 is only 65% through range
Highly likely Ft3 is under 50% through range
When dose levothyroxine is reduced inappropriately, vitamin levels drop, conversion of Ft4 to Ft3 gets worse
Ft3 levels drop…..you feel worse
Low Ft3 leads to further reduction in vitamins
Spiral downwards
Come back with new post once you get FULL thyroid and vitamin results
Always test thyroid levels early morning and last dose levothyroxine 24 hours before test
Stop any supplements that contain biotin a week before blood test
Hello Greenhills :
Once on any form of thyroid hormone replacement it is essential that you are dosed and monitored on your T3 and T4 blood tests results.
Your HPT axis - the Hypothalamus - Pituitary - Thyroid - feedback loop on which the TSH result relies on as being complete - isn't - as you haven't a thyroid and this feedback loop system simply does not work.
In primary care it seems the yearly thyroid function test is just a TSH reading and once in a while a T4 - but this is totally inadequate for anyone on any form of thyroid hormone replacement and especially true if you don't even have a thyroid :
The TSH as originally introduced as a diagnostic tool to help identify a person suffering with hypothyroidism and was never intended to be used once the person became a patient and was taking any form of thyroid hormone replacement.
The computer does not know you from Adam and it seems you doctor doesn't know any better but to recite this dogma without thinking or knowing of your medical history and you are not being listened to - I remember this very well, when I found myself in a similar vicious circle.
T4 is a prohormone, a storage hormone and needs to convert within your body into T3 the active hormone that runs all your bodily functions.
We generally feel at our best with a T4 up in the top of quadrant of the range as this should, in theory, convert to a good level of T3 at around a 1/4 ratio of T3 to T4 an some people need to run a T4 slightly over the range if this then gives them an improved T3 and they function better.
Your ability to convert the T4 into T3 can be compromised by non optimal levels of ferritin, folate, B12 and vitamin D, and inflammation, physiological stress ( emotional or physical ) depression, dieting and ageing - all play a part in total body wellness - so whilst we can't turn back the clock we can do something about most of these important points.
Just for reference a fully functioning working thyroid would be supporting you on a daily basis wit trace elements of T1, T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mg : with T3 said to around 4 x more powerful than T4 :
Some people can get by on T4 only :
Some people find they need to add back in that smaller but much more powerful % of T3 - Liothyronine :
Some people can't tolerate T4 and need to take T3 only :
Whilst others find their health restored better by taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland and used successfully for over 100 years and the original treatment for hypothyroidism, and derived from pig thyroids dried and ground down into tablets referred to as grains.
P.S. I just looked back and see I did reply to you before - so you likely know all this already and just need to arrange your own private blood tests if you doctor refuses and then post the results and ranges back up on here and everything will then be more clearly explained to you as to what your next best step back to better health is.
Was it Professor Toft you saw in Scotland ?
No it was Professor McGirr back in 1965 at Glasgow royal, pity he's long since deceased, but there are interesting articles written by him and others online. I did write to Glasgow a few years ago for their opinion on me now but they said I had good endo's where I live and so I suppose they dont want to get involved.?? There are good endo's, but theyve had conflicting opinions which led me to be on my 3rd opinion.
Well, I think it's time to become your own best advocate :
I replied to you around 2 years ago and now above, in full, and all that seems to have happened is these past couple years is that you have become increasingly more unwell.
You know your unwellness is due to your dose of T4 having being reduced :
When without a thyroid you must be dosed and monitored on your T3 and T4 readings as you HPT axis - on which the TSH is reliant - doesn't work and has been disabled as there is no thyroid there making this feedback loop viable.
Sadly in primary care there appears to be an over reliance on the TSH reading and thyroid seems not well understood and T3 and T4 blood tests the exception rather than the rule.
Whether this is cost cutting or not I do not know but in the 10 years since my RAI thyroid ablation in 2005 I only ever had a TSH and an occasional T4 run and found myself in this vicious circle of reducing my T4 because my TSH had all but disappeared.
This was when I found this forum and started my recovery and now I self medicate as the NHS would not prescribe me anything other than T4 and referred to me as a conundrum so, upset and angered, I have got myself better - and haven't needed to see a doctor for over 4 years.
Yes many thanks for all your input Pennyannie, you have done so well to not see a doctor for that length of time! I feel as though I am a difficult patient when I argue against their take on whats wrong, and seeing different doctors dosent help either. You are correct it has felt like a slow downward spiral. And Ive said this many many times to all different doctors. To see on this forum how many people are clamouring to get well is a crime. Ive just sent off an email to my surgery asking them for results back to 1996 when all this reduction of meds started, 1998 was when I first started to complain of some unwellness.... I will sort out private tests too.
Oh yes, it's all deflected back onto the patient because they are at a loss as the guide lines they work to are not fit for purpose.
It's absolutely criminal, leaving people housebound, with other dubious conditions and prescriptions, it's scandalous, and it's generally women, and yet again we are marginalised.
Ok get your historical records and if they are anything like mine they make good paper darts and shopping lists !!!
If you check my profile or first couple of posts I refer to my ever decreasing circle of wellness - or my ever increasing circle of unwellness - and this was over a period of around 3 / 4 years of decreased T4 prescriptions because of my low suppressed TSH :
Paul Robinson's Book as well.
I have not read Paul Robinson's book thoroughly nor needed to apply the logic so don't feel that I can recommend :
My reference has and is Barry Durrant-Peatfield's take on everything and I have restored my health with Natural Desiccated Thyroid.
That reply was sent to you in error.
You might like to read a book ? Written by a doctor for patients to advocate better for themselves Barry Durrant-Peatfield writes in an insightful, easy to understand manner in Your Thyroid and How To Keep It Healthy - which might read counter intuitive but we do need to know what this little but so important major gland does so we can try and compensate accordingly.
This book was instrumental in my self medicating when refused both T3 and NDT by my surgery and hospital in around early 2018.
Paul Robinson's Book as well.
I printed off a lot of Dr Durrant-Peatfields stuff online at one stage and thought it very good. I used to take info to the surgery for my GP to inwardly digest, not sure if he ever did, but he used to take the info from me, sadly that GP is deceased now, it was a great loss to me. Ive heard of Paul Robinson too. Dr Henry Lindner's info online covers lots of aspects of the thyroid, esp the article on Hormone Restoration, and the associated knock on effects, and I can really relate to a lot of it. Shame he's in Pennsylvania.
I'll look him up. Paul was on a webcast and having been through it himself realizes a lot of the issues. Have you thought of pursuing self meds if necessary? I liked Uni-Pharma from Greece.
I'm only about 177 miles from his office. Do you know if you have any genetic issues like mthfr or deiodinase which impact your condition. "Deiodinases are selenoproteins and, thus, susceptible to selenium deficiency. "
Ive never had a problem with the actual meds, I was very well indeed on 200 mcg, my investigation now is to find out once and for all if reducing the dose was the correct thing for me. I have no genetic issues or selenium deficiencies. For now I will just concentrate on private testing and see what the outcome of that is.
Some members are taking very high doses usually due to some sort of resistance which Paul Robinson talks about. I suppose if something changed in your body chemistry, maybe another hormone, and that made a change in your need for thyroid hormone, you could do ok on a much lower dose. But your symptom of fatigue really suggests you are on a dose which may be too low for your current needs. Most commonly people on T4 only take around 125-150 mcgs. I hope you can choose whichever dose lets you feel well. Best Wishes
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