Where does this 85% of people on t4 do fine come from?

Keep seeing this figure thrown or vast majority around but who came up with that?

I really doubt the vast majority do fine on t4 alone. I keep seeing figure of 85% of people on t4 do fine but, where does that figure come from? I really disupte that. How many continue to have symptoms but because bloods are fine the are old it's all in their mind? How many people diagnosed with Fibro, CFS etc? How many people with mental illnsess like depression, bipolar, schizophrenia that could really be thyroid disease/disorder?

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  • Hypo101,

    How can you dispute 85% are fine on Levothyroxine when you don't know where the 85% figure comes from?

  • Well looking at logically at how thyroid controls every part of your body and just how many complain of feeling bad on t4 along and hearing of many people being diagnosed with cfs, fibro, bipolar, depression etc etc when it was thyroid condition makes me doubt that figure where ever it came from.

    Obviously being on interent people who generally do fine on T4 only won't post but still have doubts on the figure being that high.

  • I too would dearly love to know the evidential basis for this figure.

  • This originates from a study by Saravanan which found that when you compare patients on levothyroxine with healthy controls you get about 15% more cases of psychological symptoms or thyroid symptoms. See ncbi.nlm.nih.gov/pubmed/123... . So, of all the patients on levothyroxine 85% have no more symptoms that the general population.

    These patients will on the whole have been diagnosed with an elevated TSH and low fT4. Those of us who are hypo with normal blood tests or need lots of L-T3 will not be recorded in this study. But levothyroxine only does work for many patients.

  • I'm not saying it doesn't work. I just have hard time agreeing with figure like that.

  • The 15% is a rough figure given by patients, you can see the actual numbers in the study, just dedut the control % from the patient %. It's a good study. The patients in this study will have been diagnosed mostly with primary hypothyroidism, a TSH > 10 in most cases. These patients do on the whole do well on levothyroxine. Those of us who had normal blood tests, were hypothyroid and require liothyronine are not part of this study.

    All the successfully treated patients do not go on forums. I broke my arm once but don't bother going on a broken arm forum ;-).

  • Why do you doubt it, why shouldn't 85% be doing well on Levo, I do very well and haven't got any of the other problems you mention. With any medication or supplement there will be some who do well and some who don't, doesn't really matter about how many either way.

  • 'The ATA and AACE both recommend levothyroxine as first-line therapy for patients with hypothyroidism; in fact, the latest ATA guidelines advocating this stance were published just at the end of last year and conclude that levothyroxine monotherapy is effective in treating approximately 80% to 90% of hypothyroid patients.'

    medscape.com/viewarticle/83...

    One of many. Just done on an arbitrary Google and there are doubtless others for we Blighty hypos. No-one hears us shouting alone; TUK is our voice on this side of the pond, but when medical consensus becomes medical dogma and endocrinology is in its infancy this will be a tough nut to crack. Don't hold your breath - some endotw*t has probably plucked this figure out of the air. As the 'doctor knows best' brigade (bless them) abandon this ship of fools, other voices will finally be heard. :)

  • Approximatley 80 to 90%. So it's gone from 85% to 80 to 90%? So actual drop of 5% in a way.

  • Or an increase of 5%.

  • It's bit of both. So instead of 15% difference it's now gone to possible 20% or 10%

  • See ? It's certainly not an irrefutable number, is it ? We need helvella , he's jolly good at the science bit (tosses hair and looks at manicure :) ) What has to be borne in mind is that only those who don't do well on T4 are likely to end up here...we should rejoice that so many of us get well without resorting to self funded meds, blood tests and books and also that fortunate hypos like bantam12 remind us that we're not all suffering. Hurrah for that :D

  • Doctors fantasy.

  • As others have hinted up thread, the majority of hypo patients probably do get along fine on Levo. I would guess that most of the folk on this forum will be in the 15% that Levo isn't working for. Please don't knock Levo, there are 1000s of us for whom it has transformed our lives. I'm sorry if it isn't helping you, and hope you can find a treatment that will.

  • I haven't knocked it at all and I've said it works for people. I just think that figure is a little high and surprised.

  • i think you will find theres a fair percentage of thyroid patients who do not feel fully well on levo but they have got used to a poor quality of life or have believed their doctors saying blood tests are fine so they do not enquire furthur

  • And you will find there are more who do feel fully well and the blood tests reflect that, as rustyspokes said " please don't knock Levo" .

  • Again I haven't knocked it and have said it works but hard to believe that figure

  • Possibly,but since diagnosed I have discovered four very near neighbours also hypo ,on levo only who had never heard of ( nor interested in) this site,T3 ,NDT etc.

    If everyone here also has four close neighbours just on T4 ..........

    Not scientific but the point is the vast majority are doing OK on T4 including me.

  • I have 5 family members on Levo and absolutely fine, my younger sister as been on it for about 40 years and never had any problems.

  • It is nice that levo works for a lot of people though I also suspect that quite a few of those who are classified as those doing fine will have problems they (or their doctors) believe cannot be solved or they even do not associate with their thyroids in the first place. I was certainly told that because levo does not work for me as expected and my quality of life is poor I will have to get used to it! And here lies the main problem - the majority (as defined by some studies and numbers derived from them) is ok so the minority better shut up and accept their lot. Some do, the rest end up on this or similar forums and become very vocal instead. Forcing one solution on everybody rarely works in any sphere of life so forcing levothyroxine on all patients irrespective of how they really feel when other medications are available and proven to work well in many cases is wrong. But as long as the numbers (and money made because of them) are as they are there will be little change I guess....

  • I was put on NDT nearly 30 years ago though it was called extract then. I only moved to Levo whena prolonged strike stopped it coming into the county and I was fineon Levo for many many years. When I then wasn't good on Levo it wasn't the Levo but low vitamins and minerals, some of which I'd been told to take from day 1 but were no longer sufficient. Felt loads better when those were up to scratch. My conversion was now nearly perfect. I had heard various comments though that being post menopause can make you more unstable so being very slightly low on conversation I decided to move to NDT having heard it cAn be slightly generous on T3. I now take 1.75 grains of NDT and 2 every third day and feel pretty good. I don't think Levo has been inferior but it wasin a period when other things weren't quite right

  • More important than worrying about whether it is 85%, 80% or just 1% of people on levo who do well, is the fact that the medical fraternity accept as being quite true the fact that a considerable number of people do NO do well on it. Even though they admit to this fact, the UK Society for Endocrinology first suggest looking for alternative causes of continuing symptoms of hypothyroidism, then having a retrospective review of the original diagnosis, then....nothing!!!

    Their use of words such as : “future research”, “data are lacking”, “further studies”, “suggested explanations for persistent symptoms”, “the clinical significance of this is unknown”, “there is insufficient evidence”, “no consistently strong evidence”, “high-quality controlled long-term outcome data are lacking”, “paucity of long-term safety outcome data” occurs often. Their attitude is typical of other medical bodies and is quite pathetic.

  • I agree with reallyfedup123. How are the successes counted? I was told by my 2nd doc (who I call my stupid Endo) that her treatment of me was successful because "she" had managed to raise my TSH. So I went onto the "success" pile. The fact that she had made me very ill by reducing my dose was irrelevant and by all common sense judgements I was very much a failure. I remember her words very clearly - after I questioned her about something (I forget what) - she said, "Well you are successfully healed, my responsibilities are over, if you have other symptoms you will have to go back to your GP to have them diagnosed!" It's all in how you count.

  • I’m not disputing whatever figures someone has come up with. However, what I would dispute is the description of “wellness”.

    My GP probably thinks I am now one of the “well” ones, with my prescription for levothyroxine which I still take. However, I also self-medicate with T3; I have a private nutritionist, and have made major changes to my diet and lifestyle, and take a pile of supplements – all treating symptoms which my endocrinologist and GP are disinterested in, and which have all now been successfully addressed. So yes, on paper, I would be seen as “well on levothyroxine only” according to my GP.

    I have family members who take levothyroxine only, and would also be seen as being in the percentage who do well. They are not well though, and think it’s normal to be fatigued, gaining weight, depressed, have pins and needles, pain etc. They’re “well” because their GPs have told them so.

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