I keep reading posts by people following particular protocols or with specific genetic whatnots who insist there's only one way to be really well and it's only NDT or only T3 or only a mix of T3 and T4 but only in proportions of 1 to 4 or 1 to 10 or 1 to 13! I'm currently following what I think is the prevailing approach on this forum - to get your levels high in range - but I'm just wondering why there are so many adamantly different opinions? Couldn't we all be tested for the genetic whatnots and given what we need? I haven't even mentioned the prevailing docs opinion that if you can't get well on t4 you're just depressed!
Any ideas why there's no consensus?
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JAmanda
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Everybody is different and what works for some doesn't for others. For example I feel well when my T4 is top of the range or even over the range. I am not taking anything at the moment because I am on my second remission but I have taken both Levothyroxine and Thyroid S in the past when my levels were too low for me. I go by how I feel more than blood results if I am being honest. My TSH does not reflect how I am feeling and I don't think it works anymore because I have Graves'
I think it is best to read other peoples advice and if you think it is worth trying give it a go because it is all trial and error with thyroid disease and I am still learning new things about it after 12 years.
Once-upon-a-time (before blood tests and levothyroxine) all doctors diagnosed us through clinical symptoms and we were prescribed NDTs on a trial basis and that was the only replacement thyroid hormones - made from animals' thyroid glands.
NDTs prevented an awful death and saved lives from 1892 and still does today (except now banned in the UK).
First of all - I was diagnosed by a First Aider and not by any medical person I consulted or paid and even had an operation as I was told I had a 'web' in my throat and may choke to death.
I had no such thing but did not get my money refunded.
Finally with a TSH of 100 my GP phoned to tell me that I had nothing wrong at all as my results were fine. Fortunately (thanks to this first aider) I had also had requested a blood test form not knowing what the doctor had requested. The hospital phoned surgery to ask why I had two blood tests as my TSH was high.
If you are in the UK, our 'options' have been slowly eradicated without consulting patients at all. It is a 'like it or leave it' option.
I've also read a 'last testament' from a woman who could no longer travel along this road and left the letter for the coroner to read.
Due to our bodies, it can reject things it doesn't like - some people cannot eat certain foods without feeling unwell.
A short time ago we could trial, T3/T4, NDTs, T3 alone but T3 and NDTs now prohibited, except if a Specialist prescribes. The one I saw told me, just as I sat down, that no T3 would be prescribed. Waste of my time and without it I cannot function at all.
The 'organisation' is not worth what they get paid to help/assist those who have dysfunctional thyroid glands.
Lots of opinions is often an indication of lack of understanding. Not pointing my finger at the people - but the science as known.
Yes - you can now get a details while genome sequence done - about 1000 US Dollars.
No - you cannot interpret that in terms of identifying the best regime for an individual. A few genetic whatnots are known to have an impact, but their precise effect is far more complex than simply being identified. Because they are in the context of all the rest of our genomes.
(Even identical twins end up with sufficient genetic differences to be significant!)
It doesn't matter if desiccated thyroid is "perfect" for one person if it doesn't suit you!
The best predictor of optimum levels of Free T4 and Free T3 is probably what they were in you - before you suffered and thyroid disorder. (If that is applicable - which it wouldn't be if that started before adulthood and the stabilisation of levels as young adults.)
But even then, taking doses of thyroid hormone by mouth is very different to having a thyroid which secretes in tiny pulses.
Each of us is individual - and that individuality comes from the combination of nature and nurture. I am happy to believe some do best on desiccated thyroid, some on T4-only, some on T3-only, some on a combination. That dosing patterns might prove very important.
I want to know how many of us autoimmune hypo patients have TRab , how many have the 'blocking' sort as opposed to the stimulating sort. How do results from these people relate to problems in thyroid treatment.
How many (like me ,who's never had a goitre and therefore never had a scan) have what amount of thyroid left after 10 , 20 years of autoimmune disease.
When is it 'dead ' if ever.
Stuff like that would be really illuminating ..
Stuff like that that would be really easy to check and record and build up a data base..
If anyone had a mind to..
After all, they have us in once a year anyway for the annual "time for the GP to mess up your dose " TSH test.... so why not measure something interesting while they're at it..
If i was in charge....
(actually if i WAS in charge it would be a shambles... think piss up / brewery/ with Zero IT skills)
If we all rolled off a pre-set production line then maybe pre-set treatment laid out in an instruction manual would work!
We don't, and it doesn't!
It's called being human....and thankfully we are all different.
Therein lies the clue as to why "there's no consensus" regarding treatment.
There are 78 organs in the human body, for the most part, they work in harmony, that is nothing short of a miracle. But, when harmony breaks down, we suffer in varying degrees as is, for example, evidenced by the many and differing experiences of TUK members who have not responded well to LT4 treatment.
If there were to be a consensus I can only see that as being, " we are all different with different needs". Recognising that is the first step to recovery. There is more involved for some people, than. "getting levels to high in range".
People don't always have, "genetic whatnots" and even then the results don't necessarily determine the exact treatment required.
" I'm just wondering why there are so many adamantly different opinions".
Is it not, instead, that the solutions are different but the opinions are the same....current diagnoses and treatments for thyroid disease are unfit for purpose! If we are adamant about anything then, from where I stand, that is it, and to change that, the stance of the current decision makers has to change.
Back to my original point, we are all different with different needs and being told that, "this little white pill (levo) is all you need to make you well again", is for many people a recipe for disaster. That only succeeded in making me very ill!
You are correct, first we need to be properly and thoroughly tested....but we also need medics who understand both the results and thyroid function!
...and 15% isn't enough to tip the balance towards being worthwhile it seems.
If we are awkward it's only because their inability to restore our health highlights their lack of knowledge ...and is embarrassing for them. So, guess what, it must be our fault...and so our health declines!
To quote Sir Walter Scott, " Oh, what a tangled web we weave/When first we practice to deceive'
Sort it out guys!!
I'll be the one with "Cynic" written on my forehead!!!
Why are there no other options readily offered on the NHS except T4 - Levothyroxine ?
Some years ago you would be treated with synthetetic T4, and if this didn't work well for you, you were believed and synthetetic T3 may have been introduced by the doctor who also had the option to prescribe Natural Desiccated Thyroid should s/he think it appropriate.
It's inevitable, in this day and age, that a patient whose health is not restored with T4 only will look outside the system and possibly go " private " where we give clues as to who they should see.
So we have entered a two tier system and something of a post code lottery regarding NHS prescriptions, and there not being any real evidence on Liothyronine being effective and it is more expensive.
Liothyronine does not have to be expensive - look to the continent :
So is there something else going on there, within the NHS in the uk ?
This forum is an amazing safe place and patient focused and all we have established is that we are all different and what works for some, doesn't work that well for others.
We need options and must remain open minded, and the actual opposite to the situation many of us find ourselves in - so we jump in and try alternatives - reminds me a bit of prohibition and illicit candelstine purchases through the " net " - not that I was around then.
But seriously, treatment options have now been reduced to nil :
You would have thought doctors, with any knowledge of thyroid health issues, would query this retrograde step, and work to reverse the guidelines and rules to which they seem to be wedded, quoting the dogma through the computer screen, and I guess, it's bigger than them.
I think it's logical that the more options there are the more approaches there will be : as we are all different and coming at this with our own health issues and no two of us are identical.
All we all know is that it's better to repair core strength vitamins and minerals before you start messing with the hormones, and rebalancing these thyroid hormones is a slow old business and that there is no " quick fix " :
I think there are very few patients who are adamant with other patients, probably? I mean I feel quite ill just looking at the test results of people who are T3 only! And then there are other people who have better fT3 than mine was before I added it on levo only and I think “how come you want to add T3 when I would be feeling great on what you’ve got”. But they’re not me! And maybe the fT3 in their bloods isn’t reflecting what’s actually entering their cells. I guess the issue is that the science is way behind. Women’s issue, not interesting, etc.
I have my inherent biases based on my own experiences, as we are seeing. So when someone is struggling with a T4/T3 dose, my first thought is always that they need higher fT4, because that is what I would need... assuming that they are anywhere over 40% on fT3. And if you think about it, I’m probably not particularly representative in finding 40% fT3 amazing and thinking I probably don’t need it much higher! Was at 11% before treatment, which sort of explains why I feel 40% through range is nirvana. That makes me odd, I think. It’s also making me think I should be clearer with others about my own biases when responding perhaps. And additionally, I’ve never tried having really high fT3, so that might be awesome for me, but I suspect I’d be falling asleep face down in my dinner... If I had to guess I’d say it’s the fT4 which makes me feel awake and the fT3 which takes away my pain, physically and mentally...
When I think on it, no wonder we confuse the bejaysus out of endos! I mean there’s no one rule even on the T4/T3 thing which works for all of us here who are relatively switched on to our own treatment. Obviously the problem would solve itself somewhat if endos respected us as reliable witnesses to our own symptoms... participants in care rather than objects of it... dang those thyroid patients and their unrealistic expectations, eh?! I pity the next endo who thinks he’s going to deal with me without listening... with fT3 at a whopping 40% through range I’m a lot harder to mistreat as I’ve recovered my inner difficult woman and I believe in her again... !
lol "inner difficult woman"... i've just realised why all that 'find your inner child ' stuff didn't work for me .. ....was obviously looking for the wrong person.
That all resonates with me. Ive realised I need a high t4 to get to sleep and stay asleep but a high T3 to fix the pain. Just went for a 2 hour walk and have no pain, having increased my T3 the last few days... that said I had a migraine earlier! Who knows when you have so many symptoms!
The idea that you need to get your levels to what they were when you were well makes sense but I guess we often don't know them. Anyway, thanks for another excellent reply.
I long ago accepted we are all individuals and need to,look after our bodies as best we can.I have lived and been NHS treated/ mistreated for decades. It has been an illuminating journey. I very much doubt there is a one size fits all solution to helping people regain good thyroid health.
I go back to the day when everyone was treated with ndt. The only downside was for for folk like me, diagnosed as a child I was in my thirties when a fabulous doctor did a blood test and told me I was low in both fT4 and 3. Bless him he sorted that but I was only with him for three years so back to under medicated, then it was levo only and years of misery.
A few hiccups later self sourcing works for me. However along the way I have known people with very different needs. Not least the reason for hypothyroidism diagnosis. My thyroid was destroyed by radiation treatment in the early 1950s, however I have spoken to medical professionals who insist it is an autoimmune condition, particularly as I have other autoimmune conditions not least diabetes. For this reason I try to tell people that those products/ doses Inuse are what suits me rather than a solution.
I find no two diabetics have the same HbA1c or even daily blood glucose test results on the same eating regime. We require different pain relief for neuropathy. And on it goes.
I find that mostly hypothyroidism journeys are helped by scientific evidence and a flexible approach to treatment.
I cannot imagine how anyone coukd carry out a suitable investigation to result in finding a concencus.
Hi JAmanda, I think it's because some people speak that way, as if they know what is right rather than recognising that we have differences. Have to admit it makes me cross!
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WHY!
How many months of T4 or T3 do you get on your Prescriptions ?
Why is UK T3 so expensive?
Do many of you take T3 only??
Why would you - or why did you change from a T4 & T3 combination to T3 only?
