I’ve just got my latest results done by my Endo and am expecting a call from him as I’ve had a message from his secretary that my results are high and he wants to speak to me and TSH suppressed.
TSH 0.05
FT4 - 22 ( 12-23)
FT3 - 6.5 (3.1 - 6.8 )
I feel absolutely fine but I know he will want to reduce one or the other , any advice prior to the call would be appreciated.
I’m on 100mcg mercury pharma
12.5 T 3 both in single doses
Tests done as per protocol from forum.
My TSH is always suppressed and never changes even when my dose has been reduced ( RAI ) so never will I guess how do you get this through to Endo’s ?
Thank you wise people ☺️x
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Simplyred57
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This one shows no increase in bone loss in patients whose TSH is kept deliberately suprressed with higher doses of Levo (to prevent recurrence of thyroid cancer).
in a slightly less stroppy mood this morning.... i do actually agree with slowdragon and jim .
There are some considerations with having a T4 level that is high, but they are not the ones your endo is probably be concerned about,
some recent evidence shows T4 (whether our own , or from Levo) acts on some receptors that have a role in the proliferation of cancer cells. (more T4 = more effect)
So it is a good idea for all of us with highish fT4 levels to find out if we can feel well with a slightly lower T4 level..... if we can , all well and good .. if we can't .. so be it.... it comes down to a personal decision about risk v quality of life .
So in your own time ... pick a couple of months that are convenient to YOU to try the experiment. (when you can afford to potentially feel rubbish for a while). and try a slight reduction of Levo. Offer to try a reduction of no more than 12.5mcg/ day,
eg 87.5mcg.
75mcg one day/ 100mcg the next and so on (get some 50's and 25's in the same brand of Levo you currently have, to rule out any problems from a different brand .... cut a 25 in half if you prefer to take same dose each day)
Or you can get 85,7mcg using your current 100mcg tablets :
100mcg 5 days + 2 days 50mcg (cut one in half, but don't do the 50mcg days together) =weekly total dose 600mcg equivalent to 85.7mcg / day.
or an even smaller reduction, as slowdragon suggested.
so try a reduction at some point . give it a good 8 weeks to see how it really feels ....in my experience the first 4/5 weeks felt undermedicated , but then things improved.
And if is not OK .... in future you can tell him to sod off with more authority .
Some people can feel even very small changes in dose ,on the same day , some can't.. so just to be on the safe side , i always say that. If you do feel the difference it's a bit unsettling and could lead to having a crap weekend if you did it on Sat/Sun.
The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :
nice.org.uk/guidance/ng145
"Your responsibility
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "
Comprehensive list of references for needing LOW TSH on levothyroxine
The endo kept singing that same song to me...the one with the chorus about low TSH. In the end we agreed and she noted that I accepted all the risks that she had outlined regarding low TSH. After that the song and chorus was never heard again and we got on with the monitoring of symptoms and ft4 and ft3.
I would reduce your levothyroxine a bit as a high normal fT4 carries risks. You can then see if it affects how you feel. I’m on a higher dose of liothyronine and I find levothyroxine makes little difference although I take 50 mcg just in case it has a beneficial role.
As a general comment I think it’s a good idea to try a lower dose of levothyroxine before an endocrinologist suggests it so you know in advance whether it will make you worse. You can then take the appropriate approach, either argue strongly to stay on the same dose or be a really helpful patient and say you’ll give it a try.
thank you Jim I will take your advice and reduce it as suggested, I know when we did this last year my T4 went down to 17 and he said increase it back up as he likes it in in the upper1/4 🤷♀️Just feel like a constant experiment.
Yes I will, I’m going to keep a diary this time , last time when my t4 went down so did my T3 although that dose stayed the same so as long as my T3 is good I will try to stay on a lower thyroxine dose .
That was probably me, and/ or Hashihouseman ... my TSH did go up, to over 1.. previously around 0.05 for many yrs but i can't prove it wasn't just a one off weird result as my subsequent TSH tests (also over 1) have been done under very different circumstances , but i carried on splitting my levo in half am /half bedtime for the last year because i feel much better and don't feel inclined to rock the boat.
that’s a strange one I can’t really do that and reduce at the same time which is a shame, I did try splitting my t4 a while back but had problems sleeping so reverted back to both doses in the morning , but makes sense as it would be gentler on the body. One for the future I think 🤔.
yes, keep the idea of dose splitting up your sleeve for another time , and for when you have tablet sizes that make it do-able .
And as with everything else .. give the body long enough to adjust. I find any change in dose/ timing, even small , affects my sleep for a little while ~ funny dreams , waking up at odd times , etc ,, but usually this settles back down again after 2/3 weeks .. probably just my brain going "WTF?" ... but if they don't improve after 6/8 weeks , then i reconsider the change i made .
Your FT3 is still within the ref range....so overmedication is highly unlikely....does he understand this?
He is unlikely to understand TSH....and likely to spout unfounded scaremongering tales.
With machines it is easy to calibrate an accurate result to correlate the readings of (an instrument) with those of a standard in order to check the instrument's accuracy.....we are not machines, but medics seem to forget this!
Unlike machines we are all different!
If your numbers work for you this endo needs to provide clear evidence as to why your dose should change....not a vague waffle about unfounded scare stories.
"A respect for patient autonomy is probably the single most talked-about principle or concept in medical ethics. A respect for competent decisions by adult patients is also a cornerstone of medical law."
My GP told me about this when I opted to self medicate with T3-only! My decision is respected and has no impact on my other medical treatments.
With Graves we can have TR ab antibodies sitting and stuck on our TSH receptor sites for years, possibly for life as no one actually knows.
In this first instance it's why we were diagnosed Graves as these ' little blighters ' sat on our TSH receptor sites driving down our TSH which in turn drove up our T3 and T4 levels and caused our ill health.
But now after RAI the HPT axis is broken - Hypothalamus - Pituitary - Thyroid feedback loop -- and this circuit incomplete as we have no thyroid to keep revving up causing our ill health any longer.
We are just stuck with a wonky TSH which means diddly squat but sadly considered the " be all and end all " of all things thyroid.
THE HPT axis has both a feedforward and a feedback mechanism.
The 'feedback' part is that the hypothalamus and pituitary both detect lower or higher T4/T3 levels in the blood (via their Thyroid hormone Receptor sites) and in response the hypothalamus tells the pituitary to increase or reduce it's production of TSH..
The 'feedforward' part is that TSH is then released into the blood , and goes to the thyroid to tell it to produce more or less T4/T3 ..... if the thyroid is there and if it's working , the thyroid then increases or decreases it's production of T4/T3 . The TSH also effects our efficiency of conversion of T4 >> T3 in the rest of the body ... higher TSH increases efficiency of conversion . to make sure there is enough T3 on hand when T4 is getting low.
BUT, even if you remove the thyroid gland completely from the equation and 'break the link' , the hypothalamus (and pituitary) are still detecting any increases and decreases in T4//T3 levels in our blood as our dose is increased or decreased.
So just saying "the link is broken" doesn't explain to a medic why the hypothalamus and pituitary might be 'wrong' in how much TSH they decide to send out.
The removal of a thyroid breaks the feedforward link , but not the feedback link . And it is ONLY the feedback link that they are interested in when they monitor our TSH levels . the fact that there is no thyroid there anymore to respond the feedforward link is irrelevant to the function of the feedback link.
if we just say "you should ignore my TSH because i don't have a working thyroid and therefore my HPT axis is broken" then we play straight into ther hands .....they will sit there smugly and think , "here we go ...another patient who's read it on the internet, but doesn't really understand how it works"
So we have to use different and more complex arguments to try and show why the hypothalamus and pituitary may be 'wrong' :
(not had enough coffee to get this right just yet ,so don't quote me ... but) ~ for example:
~ how hypothalamus (and pituitary) respond differently to T4 and T3 .
~when on levo we are getting an altered ratio of T4 ;T3 ... more T4 /less T3 than in natural state.
~ issues around lingering effects from TRab's .
~down regulation of TSH response following prolonged periods of TSH suppression
~how the reference range for TSH needs to be adjusted to compensate for these changes in T4;T3 ratio in patients who take thyroid hormones.
..... that sort of thing
eg this one that diogenes just put in a reply to someone else who had TSH 0.06 :
" Your GP should realise that in T4 therapy a below-reference TSH doesn't often matter. Indeed this downloadable paper shows that in therapy TSH as low as yours can still express the body as euthyroid. You could download it and show its basic conclusions, "
Thyroid. 2017 Apr;27(4):484-490. doi: 10.1089/thy.2016.0426. Epub 2017 Feb 6.
Biochemical Markers Reflecting Thyroid Function in Athyreotic Patients on Levothyroxine
thank you tattybogle ok I won’t go down that route , I’ve not had my call back yet I think I’ve already decided I’d like to reduce but very very slowly definitely not as he suggested last year when my T4 went to 17 on a reduction of 50 per week , and I didn’t feel good so maybe reduce by 25per week for now 🤔
Well I had the phone call yesterday 😤and after going round in circles me saying I didn’t want change anything as I felt really well , he kept banging on about TSH and how dangerous it was to my bones and heart , I was at work so it was very awkward upshot is he wants me to reduce my T3 ? Told him I would reduce thyroxine very slowly but he said let’s try this , I had to cut the call short and said I would but now I’m sure I don’t want to and feel I should email him , but not sure what to say now he really caught me off guard, I angry at myself for caving ☹️
Hi , don't beat yourself up for 'caving' .. you've got a medical professional telling you "your gonna die" . and it's hard for anyone with any intelligence to totally ignore that sort of genuine concern /pressure at the best of times....... let alone when you're at work .
I do think you should email though ... let him know you're worried about unsettling your current wellbeing if you need to be ok for work , and say you would prefer to try lowering T4 a little bit for now and see how that goes for a few months .
thank you tattybogle that’s perfect I’m going to copy and paste your response if that’s ok , I’ve been tossing and turning all night , I’m going to email him now and request an appointment with him if necessary 😉
tattybogle thank you so much after my email I’ve got another telephone appointment on Thursday to further discuss , this time I’m going to agree to reduce my thyroxine 2 days a week to 75 and 100 - 5 days a week.
I’m going to say I would like to be on the lowest medication possible , but as long as it’s not detrimental to my health as that is my priority and ask him to work with me. I know my TSH will not move as it hasn’t in 4 years on all different levels on T4 & T3, but will play the game. Once settled I’m going to try splitting my thyroxine. Will keep you posted 🤞🏻
hi tattybogle , just to let you know my 2nd telephone appointment went ok 👍🏻
I refused to reduce T3 but I agreed to reduce my thyroxine 2 days a week 100 & 75 Wednesday & Saturday, but that I was NOT doing it to raise my TSH, he kept banging on about the risks of suppressed TSH so I told him AGAIN I was not worried and had read the NICE guidelines so stood my ground . I did mention my graves and RAI and how can I be treated the same as someone who still has a functioning thyroid and he just went back to I would be happier if your TSH wasn’t suppressed so I said I’m happier and healthier with it suppressed , so let’s do do bloods in 8-12 weeks 😂
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