Earlier this year I attended a Thyroid Trust conference in London - and reported on it in a post soon afterwards. I have just received an email inviting me to complete a questionnaire, and asking Could I ask you to please share the below link far and wide, so that the research can be informed by lots of people in the UK - it's for anyone with hypothyroidism of whatever origin
I thought it an interesting and well-designed questionnaire - it takes around 25 minutes to do. For what it's worth, this was what I put in the box at the end ...
I feel very lucky to be prescribed lio alongside levo - it has been a real life-changer. I strongly disagree that a suppressed TSH is a bad thing - when you are on lio your TSH is inevitably suppressed without free T3 going over-range. I believe doctors treating hypos solely by TSH or being satisfied when results are "in range" rather than "optimum" is not in patients' best interests. GPs' knowledge of hypothyroidism is scant: this does not benefit patients. Organisations like Thyroid UK and the Thyroid Trust are so helpful to us - they fill in the gaps in our doctors' knowledge.
Please complete the questionnaire if you're hypo and forward it on to others x
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fuchsia-pink
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"when you are on lio your TSH is inevitably suppressed without free T3 going over-range."
It cannot be assumed that one can take T3 without FT3 going over range, as your comment suggests,. I would suggest that this is misleading and potentially dangerous.
It does, of course, depend on the dose taken. One can most definitely end up with an over range FT3 if the T3 dose is great enough....taken either deliberately or accidentally.
As I'm sure you know T3 is a very powerful hormone and must be treated with understanding and respect.
Over range FT3 is to be avoided unless, it is the result of an RTH/high dose T3-only situation which is fairly rare...this becomes complicated and needs to be very carefully monitored.
I have RTH, take a large dose of T3 and consequently have suppressed TSH and over range FT3....this is what my body needs in order to function. Without RTH the dose I take could be dangerous
TSH will only become suppressed if there a high level of serum hormone, the pituitary will then send a signal (TSH) to the thyroid gland to stop producing more hormone until levels change.
As a pituitary hormone TSH responds to available hormone in the serum, therefore low hormone = high TSH and high hormone = low TSH.
There is nothing "inevitable" about lio per se causing suppressed TSH, it is the amount taken that determines the pituitary's response and therefore the TSH reading.
Sorry to be the" grouchy granny" here but it concerns me that T3 is used safely....in writing this I fear my words may be viewed as criticism, that is absolutely not my intention. I'm not a medic just another member who has had to travel a long bumpy road to reach recovery, with much reading and invaluable guidance from knowledgeable and experienced members.
Resistance to Thyroid Hormone.....a complicated condition which at the most basic level means that something prevents T3 entering the cells from the serum....the resistance of the title. It can be genetic or acquired but ongoing research will hopefully uncover more. Much of it is beyond me!In my case I need a large dose of T3 to act like a battering ram against the resistance, this when the dose is adequate, forces some of the T3, via T3 receptors, into the cells where it then does it's work. Any excess is eliminated by the body via bowel and bladder. There are no tests to measure cellular/tissue T3 so dosing has to be led by clinical evaluation/symptoms
Clearly much more complicated than this but it might give you the gist of the problem, you will find more on-line by using your search engine.
Hi DippyDameI think you have mis-understood - I'm saying that it is entirely possible to take T3 meds (as I do) without going over-range. BUT when you take lio, your TSH level reduces: that is my experience; and I firmly believe that taking lio and having under-range TSH but in- range free T3 isn't dangerous. [The questionnaire contains a true/false question where they say that under-range TSH is dangerous in itself, with no reference at all to other blood results]
No fuchsia-pink I did not misunderstand your words, "when you are on lio your TSH is inevitably suppressed without free T3 going over-range." Sorry!
Had you explained your thoughts in your response in the questionnaire as you have now rephrased them to me in your words above, then there would be no confusion....but you did not, and there is.
The reader is not a mind reader so you must make your point clear.
And. please do not suggest that I took your words out of context I took the literal translation of what you wrote and I disagree with the questionable message it conveys....as I explained.
I might suggest that the wording of the questionnaire is also ambiguous.
I don't doubt that you understand how powerful T3 is - and said so in my initial reply - but others reading this may not and that was my concern.
Hopefully we now better understand each other.....we are all in this thyroid mess together!
Looking at the Thyroid Trust page linking to this survey, and reading between the lines... it seems they might have the same concerns as us about aspects of the direction of some questions in this survey. "FYI we have some questions about some aspects of this survey, which we have sent to the researchers and TFI. If you'd like to share any questions or feedback you may have with us, as well as the researchers, please feel free, but it is most important that you give your views to them"
I hadn't heard of The Thyroid Trust before now , they seem to have been very busy and look like a nice bunch.
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