New paper

[diogenes]

We've had another paper accepted by the European Thyroid Journal which will be published shortly. In brief, it proves that in healthy people, before thyroid problems arise, each person has their own setpoint in the normal ranges of TSH, FT4 and FT3. An individual does not have different results at different times, that might cover the whole range, but persists with their own narrow range that typifies them as a unique person. Therefore if a subject has a result outside their setpoint but still in range it could mean that a thyroid stress is taking place even if they are not openly hypo or hyper. Furthermore, when patients get thyroiditis, and the thyroid is damaged but not yet treated, they still show their individualism in the setpoint but at a lower level, as you'd expect for a damaged gland producing less hormone. Only when they are frankly hypothyroid and then treated does this basic difference in setpoint show up in their unique response to treatment. The higher in the range the FT3 when well, the more likely is a patient to require T3 as additional treatment when thyroid disease strikes. So the paper points out the wholly individual nature of people and the resulting need to treat them as such in thyroid hormone treatment as required. Finally, this finding strongly supports the idea, which was written into the paper, that everyone should have at (say) 20 years old or perhaps sooner, a FT3 and FT4 measured when perfectly healthy, to be stored as information to help the doctor use appropriate treatment early when needed, knowing where in the ranges the healthy subject was originally. Of course whatever one does, some people will get thyroid disease before any chosen age, but at least this approach would help the majority. No doubt the cost of doing it will be raised against this, but the social cost of misdiagnosis , wrong treatment over time, and inability to work in my opinion far outweighs that.

[Marz]

HURRAY -

[nightingale-56]

If only these tests could be done Diognese. Look forward to reading the paper in due course. Thanks for being so helpful to us.

[Jazzw]

Such common sense. Thank you, Diogenes x

[Salsa2014]

I have been telling my Consultants that my results are no longer normal for me since my hemithyroidectomy in February 2014, as my TSH was taken 4 times prior to Surgery and was always 0.66 and on one occasion 0.68. My TSH was 0.66 even in 2007 when I had it tested for another reason!

They have generally scoffed at the idea that the results would always be within such a narrow range. My TSH is now about 2.18 although my FT4 appears to be broadly similar, around the 15 mark. My FT3 was sadly not measured before surgery, but always now appears to be in the 4-4.5 mark each time it is measured. I am hoping it wasn't too different before surgery as FT4 seems to be similar. Does anyone know if this would be the case-i.e if FT4 is similar to what it was pre-surgery, would FT3 also be the same? I would be grateful if anyone could shed any light on this.

I am so glad this paper has been accepted-it has validated what I have instinctively known to be true, and what has also been demonstrated by my consistent TSH prior to surgery. To me, it seemed common sense, and I can't believe that in the case of hemi thyroidectomy for example, that they don't compare current thyroid results with previous ones. When I asked one of my Consultants why they didn't do this, they replied frostily 'that it doesn't work in that way'. The so called 'care' in this area, is truly abysmal. Eg with hemi thyroidectomy they still leave you to fall 'out of range' before they treat you, by which time, because it is not normal for you as an individual, the patient could have become really ill.

My Consultants at the Hospital where I had the operation always insisted I wasn't hypothyroid, and whilst I agree I am probably not overtly hypothyroid, this research proves that my thyroid is struggling to some degree to produce the correct amount of hormone I need for me as an individual, and not in some terms of arbitrary man-made reference range. In other words, I appear to not be optimal. At the moment, my symptoms aren't too bad-just very heavy and erratic periods (different from previously), a bit more tiredness and lower mood and motivation-I seem to have become more apathetic and lost a degree of drive/ambition, as well as apparent reduced immunity.

I am so grateful for your paper-please can you publish the link so I can access it? Hopefully this is the first step in treating people as individuals, but I find it disgraceful that this has not been researched and acted upon sooner. They could have researched people having hemi-thyroidectomies to see the difference between their old and new results, and this would have shown a consistent pattern of difference in TSH, and in some people, FT4 and FT3. This would have identified that 'one size' does indeed not fit all.

[diogenes Remembering in reply to Salsa2014]

Regarding relationships between FT4 and FT3 before and after treatment. They probably will not be the same. The reason is that your healthy relationship was based on the interaction between your thyroid and body producing T4 and converting it to T3. In treatment, if you don't know your healthy levels, you either get T4 only, which isn't the same as the body +thyroid works, or you get T4/T3 combination which again is a guess. In treatment the aim is to get a decent FT3 level - your new set point will take care of the rest. If it happens with T4 only, fine; if not T4/T3 combo is needed. TSH should not come into it much except to make sure you are taking the tablets.

[Salsa2014 in reply to diogenes]

Hi Diogenes.

Thanks for your reply.

Can I just clarify though-if my TSH is 3 times higher than before surgery, but my FT4 is still roughly the same, does this mean that I'm probably not too hypothyroid, despite the 3 fold increase in TSH (0.66 prior to surgery, 2.18 now). As I said previously, I don't know what my previous FT3 level was, as this was not taken.

Thanks,

Sarah

[diogenes Remembering in reply to Salsa2014]

I don't feel able to diagnose but I'd rather see your TSH closer to 1 - 1.5. You may need a little more T4.

[Salsa2014 in reply to diogenes]

P.S I have found a Consultant willing to trial me on 25mg thyroxine, but am scared this may make my remaining half less active and I might feel worse...scared of taking it, scared of not taking it!

[SilverAvocado in reply to Salsa2014]

Salsa2014, I had a hemi-thyroidectomy, followed by removing the other half 6 weeks or so later. My TSH skyrocketed up in that time, it was 3-ish within days, and 8 a few weeks later. At the time this was still called sub clinical I'm told 90% of people are fine after a hemi-thyroidectomy, but of course you would be put in the 'fine' bucket. I've heard of people worse and less bad than mine on this forum, so I guess people respond very differently. And of course have the surgery to treat different conditions.

Although I went on to have the completion thyroidectomy and so was obviously hypothyroid, my treatment was also rubbish. I only started getting better this year by self treating myself with NDT. I'd reached the point, and been there for about a year, where my blood tests all looked perfect, but I was still mostly house bound and not improving . So my experience was that my body just wasn't making use of the synthetic hormones.

This is a long-winded way of saying you may be better off self-medicating. Many doctors won't treat you until your TSH reaches 10, which is of course ridiculous! Otherwise you have a chance of finding a good one who is willing to give you the benefit of the doubt, and trial you. But even then they may not be good at reading blood tests and tuning your dose.

[Salsa2014 in reply to SilverAvocado]

Thanks for your reply.

I really hope you improve soon. It is an absolute disgrace that we have to fight for proper treatment.

I have found a Consultant willing to trial me on 25mg thyroxine, but am scared this may make my remaining half less active and I might feel worse...scared of taking it, scared of not taking it!

[SilverAvocado in reply to Salsa2014]

This is a controversial question. I think doctors tend to want to avoid making the existing thyroid less active, but I've heard posters here say it's inevitable it will become less active and everyone requires what is essentially a replacement dose.

25mcg is certainly a very very low dose - 50mcg is often given as a starter dose. So there is a good chance you will feel worse when you first take it. But this is part of the hoop jumping you need to do to get treatment - you will only be given a higher dose by showing that you've tried out the lower dose and its not enough. Best practice is to get retested and dose adjusted after 6 weeks.

[dolphin5]

Brilliant, well done and a very big thank you!!!

[lola1956]

Great idea 😊

[diogenes Remembering]

No, rather they require higher FT3 to stimulate their cells. I suppose in a way you could call this resistance, but that term I reserve for the really resistant who have above range FT4/FT3 but are euthyroid.

[diogenes Remembering]

You make me think I'm doing what I've criticized other people for; that is assigning people to a situation depending on whether they are above or in a range. I thinK you are right but I wonder if subjects can go so low in their use of FT3 as to be "healthy" and yet have non thyroidal symptoms. I come to believe that what you call "thyroid hormone resistance" is a phenomenon that may stretch into the "normal range" for FT3, thus demonstrating a low level of this situation in the higher reaches of the FT3 normal range. Interesting and I'll have to think about this more.

[maggykriti]

That sounds so helpful. I hope it will be widely read and used by practioners.

[thyr01d]

Hi Diogenes, will you post your paper for us to read and take to our medics please?

[diogenes Remembering in reply to thyr01d]

I will but can only do so when formal publication is made by the journal. It's likely to be a journal that only permits abstracts to be downloaded except for a fee but if so I'll send it to Louise Warvill for you to collect from her or TUK could put it up as an accessible site.

[thyr01d in reply to diogenes]

Many thanks Diogenes