# Thyroid disease 'being over-treated'



## Northerner (May 15, 2019)

Hundreds of thousands of people in the UK are being prescribed thyroid drugs unnecessarily, according to international researchers.

They advise against lifelong hormone treatment for mild underactive thyroid problems (hypothyroidism), saying there is not enough proof it helps.

The daily tablets do not appear to ease symptoms such as tiredness, low mood and weight gain, they claim in the BMJ.

Experts stressed that patients should not stop taking their medication.

If they have questions, they should discuss them with their GP at their next routine medication review.

Hypothyroidism affects about one in 20 people but is more common in older age and among women.

https://www.bbc.co.uk/news/health-48265023

I appear to fall into this category. I'm unsure whether the levothyroxine I have been taking since January is having any effect since I wasn't particularly aware of any symptoms before diagnosis or whether now things have changed from how I felt before


----------



## Lanny (May 15, 2019)

Umm! I’ve had a borderline under-active thyroid for years & have never been medicated for it although I had it tested periodically, less then often before my diabetes diagnosis, & at every diabetic review afterwards. I’ve always wondered if I’d feel better on medication & you say you’re doubting if your meds are helping? Umm!


----------



## mikeyB (May 16, 2019)

So what is the level that you start treatment? Are the reference values wrong? If not, then this smacks of money saving. Tiredness, low mood and weight gain are not the only effects of a low thyroid level, and most can’t be seen or felt. 

That said, this report conforms exactly with NICE guidelines- only treat overt hypothyroidism with levothyroxine, and not subclinical.


----------



## Drummer (May 16, 2019)

When I was diagnosed with an underactive thyroid the doctor tested my cardio vascular system by starting off with 'There is something very wrong' - I mean - don't they think before opening their mouths?
My TSH was about 4000 times higher than normal, so I think that going by that levels would be a good starting point to determine if a supplement was required.
Even with a normal level of TSH I have never felt fully back to normal, but I was a lot better than without the Thyroxine. I still remember the feeling of warmth in my hands and feet after about three days of tablets.


----------



## mikeyB (May 16, 2019)

Yes, Drummer, you’re an example that the NICE guidelines refer to. The clinically overt hypothyroid, with what sounds like an excellent response to treatment. My guess is that your impressive weight loss wouldn’t have been possible without normal thyroid hormone levels.


----------



## Ditto (May 16, 2019)

Every single female in my family is on meds for under active thyroid, and now my brother has been diagnosed over active thyroid as his legs keep giving out on him.


----------



## Lilian (May 16, 2019)

Firstly they do not test for all the thyroid hormones.   Nowadays they test for TSH only and you are lucky if they will test for Free T4 let alone T3 (which is the active hormone).    Antibodies do not seem to be tested for either, to see if it is Hashimoto's, which is an auto immune condition.    So unless your TSH is really out of wack will you get anything done anyway.   It is usually a long slow process with an under active thyroid and the symptoms creep up on you without you realising.    You begin to take how you feel as being normal.   Some years back many women who were hypothyroid were being told it is the menopause (even those as young as 30) not their thyroid.    Just lately people are trying to raise awareness of the menopause, and at the same time we get this report about hypothyroidism.    I wonder if there is a connection.    Also, of course, hypothyroidism is one of the conditions that have free prescriptions so I wonder if that was part of the agenda to find too many being diagnosed with it.    The TSH test is really only good to diagnose someone for the first time, once put on medication the TSH test is a useless test, yet the NHS is relying on it more than ever.   The inventor of the TSH himself said it was only meant to be an aid to diagnosis.    Also, of course, when put on levothyroxine and there is no improvement it could be because the patient is still under medicated and the levothyroxine dose should be increased.


----------



## TheClockworkDodo (May 16, 2019)

I started replying to this yesterday and then my computer shut down, and now I think Mike and Lilian have said much what I was going to say.

There may be borderline people who are being treated for hypothryoidism when they shouldn't be - there may also be borderline people who aren't being treated for it when they should be.  There are undoubtedly people being treated with Levothyroxine when they should be being treated with Liothyronine or Natural Dessicated Thyroid (because these are far too expensive to prescribe, so let's not bother even testing to see if they might be needed, because clearly no-one needs meds which are expensive, do they?  )

There may be people like me - borderline underactive thryoid, no thyroid symptoms, GP persuaded me to try Levothyroxine, I tried it, and afterwards I suddenly had thyroid sympoms (for which I'm now taking Liothyronine).  I wish I'd never touched Levothryoxine - but of course I don't know if it was taking that which triggered the thryoid symptoms or if my thryoid was gradually giving up the fight with my overenthusiastic immune system and I'd have got the symptoms sooner or later anyway.  I do test positive for antibodies to thyroid, but most of the endos I've seen don't seem to set much store by that or by my raised TSH, they've always just said my T4's OK and left it at that.

I am very lucky to still have a NHS prescription for Liothryonine from my GP - I think I still have it because I had such a bad reaction to Levothyroxine that I couldn't keep taking that.  I am dreading an endo noticing I'm on Liothryonine though, because they'll probably try to stop it, despite the fact that I feel better with it than without it.  I did a 3-month trial without, to see.  R said I pretty much slept through it - I don't remember!

Btw, symptoms such as weight gain?  What weight gain?   Am still waiting for that to kick in - I think I've about as much chance of gaining weight from underactive thyroid as I do from taking insulin.


----------



## Lilian (May 16, 2019)

I have been on T3/NDT for nearly 20 years @ Juliet.    I have had to buy it myself, except about 6 years ago an NHS endocrinologist conceded (after doing far more tests than ever done before) that I did indeed need T3 and for about 5 years it was prescribed, until the price hike a couple of years ago, when it was stopped being prescribed.   The current consultant said, when I showed her the letter from the consultant who stated I needed it, that that was then and this is now.  She was very sympathetic but was told she had to stop all patients from having T3 (needed or not it seems).    I resumed buying it myself.   I am not going to let myself become ill and possibly die prematurely to prove a point.   I have a myriad of symptoms and it has a knock on effect as the brain fog, lack of concentration and  extreme fatigue stops me from being able to manage the diabetes.   My weight just goes out of control, despite one of the symptoms I get is loss of appetite probably because eating becomes too exhausting.   I met a mother and son who were both hypothyroid but extremely thin, so much so that their doctor was accusing them of being anorexic.


----------



## Northerner (May 17, 2019)

As ever, and interesting discussion for me. I have a blood test due next month and have just checked the form - it is testing for TSH and FT4, but alongside the 'TSH' it says '(not on thyroxine(=not on Carbimazole/PTU))'. This form was issued by the endocrinologist before I saw my GP who put me on levothyroxine and now I'm not sure what to do about the tests - should I just cross out the 'not on thyroxine' etc.?


----------



## mikeyB (May 17, 2019)

Yes, because it affects the interpretation of results.


----------



## Northerner (May 17, 2019)

mikeyB said:


> Yes, because it affects the interpretation of results.


Thanks Mike


----------



## TheClockworkDodo (May 17, 2019)

Lilian said:


> I have been on T3/NDT for nearly 20 years @ Juliet.    I have had to buy it myself, except about 6 years ago an NHS endocrinologist conceded (after doing far more tests than ever done before) that I did indeed need T3 and for about 5 years it was prescribed, until the price hike a couple of years ago, when it was stopped being prescribed.   The current consultant said, when I showed her the letter from the consultant who stated I needed it, that that was then and this is now.  She was very sympathetic but was told she had to stop all patients from having T3 (needed or not it seems).    I resumed buying it myself.   I am not going to let myself become ill and possibly die prematurely to prove a point.   I have a myriad of symptoms and it has a knock on effect as the brain fog, lack of concentration and  extreme fatigue stops me from being able to manage the diabetes.   My weight just goes out of control, despite one of the symptoms I get is loss of appetite probably because eating becomes too exhausting.   I met a mother and son who were both hypothyroid but extremely thin, so much so that their doctor was accusing them of being anorexic.


Please could you tell me where you buy the T3/NDT, Lilian?  I've been looking into options for what happens if someone suddenly notices I'm on meds the NHS isn't supposed to be prescribing .... and it's complicated by the fact that I really want the Morningside Liothyronine (Teva is OK, apart from coming in an un-openable bottle, having a very short shelf-life, and needing to be kept under 25 degrees  but MercuryPharma is unsuitable for me because of allergens).  I found pharmacies in Germany fulfilling private prescriptions from the UK, but they all seem to have Henning, and that also contains allergens I couldn't have.  Receptura would be OK, but none of them seem to stock that.


----------



## AndBreathe (May 17, 2019)

To be frank, my reaction to the article was that much of this is because they no longer even consider treating hypothyroidism, in many cases, until the TSH is over 10.  Bearing in mind euthyroid, and the target discussed for those on T1 is a TSH around 1, it's bonkers.  Sadly, it seems like just another condition where the concept of "well enough" is alive and kicking.

I am 3 years into trying to sort out atypical hypothyroidism (they think - yeah, right), and just yesterday my GP, after many, many such discussions agreed with me that it does appear I need T3.  She stated that my latest letter to her was clear and compelling.  Having written in in brain fog, I had thought it was a week letter, but I'll roll with that one!

I am now waiting for feedback from out local Endo who prerviously declared my thyroid to be fine, whether he ever actually prescribes T3.  Some just don't and our local prescribing guidelines (they're all online, folks), states that combination T4/T3 therapies aren't beneficial.  I would have no issue going onto solely T3, but we'll see.

When travelling recently in SE Asia, I actually bought myself some NDT, just in case I reach a stage where I want to try it.  I'd far rather stay under the wong of the NHS, but that may not be possible, at this rate.

I have the name of an Excellent Endo on Oxford who is a T3 supporter, but he holds his patients in the private sector until their titrations are stabilised.   That could become costly.  What cost of health, but we have to consider all options, in my view.

I find it astonishing that in some countries NDT is sold as a nutritional supplement, and OTC.  Where I was T3 is also OTC, but usually only available around major teaching hospitals, so if I got stuck, I'd become a health tourist, and get some natural Vit D at the same time.  (Every cloud)

ClockworkDoDo, do you use the HealthUnlocked thyroid fora?  If not, they're worth it.  They're such a great source of sound information.  Do you use them @Lilian ?


----------



## mikeyB (May 18, 2019)

This is probably an irritating post to make, but a sight more folk have hypothyroidism now than I ever saw in General Practice- it was almost vanishingly rare. 

What seems to be happening now (which NICE are quite rightly suggesting) is that more people are being routinely tested, and a decent percentage are found to be slightly lower than ideal, but who have no identifiable symptoms or signs. So NICE say, “Why treat?”. There isn’t an easy medical answer to that. 

It’s as they say in American Football - no harm, no foul.


----------



## AndBreathe (May 18, 2019)

mikeyB said:


> This is probably an irritating post to make, but a sight more folk have hypothyroidism now than I ever saw in General Practice- it was almost vanishingly rare.
> 
> What seems to be happening now (which NICE are quite rightly suggesting) is that more people are being routinely tested, and a decent percentage are found to be slightly lower than ideal, but who have no identifiable symptoms or signs. So NICE say, “Why treat?”. There isn’t an easy medical answer to that.
> 
> It’s as they say in American Football - no harm, no foul.



Unless there are extreme reasons, I would agree, provided the individual is asymptomatic, and other health markers are holding up, but like so many things, once the lid is lifted it's like a spider's web of implications.

For those who are symptomatic, the current, blunt instrument of treatment based on TSH, which isn't even a thyroid hormone, can be extremely unhelpful.

In terms of your assertion that "folks never had it before", do you feel the same about diabetes, because folks certainly didn't have that in such numbers either?


----------



## Lilian (May 18, 2019)

I agree @mike.     To treat on symptoms - which was practised prior to the TSH test.    However it should go both ways.   To treat patients that do have symptoms even if the tests are within the reference range.  It could prove helpful to have the full range of tests (e..g mine was TSH 1.6, and private test FT4 two up from bottom of range and FT3 below range when I felt at my worst but told I was OK because only TSH was done).    If a range is between say 1 - 5 some patients might be perfectly well when on 4 but others not until they are down to 1, but GP's do not think 'optimal'.    Yes I do have Healthunblocked @AndBreathe and I belong to various other groups.   It was these various groups that got my life back for me and I am now desparate to keep it.   @Clockwork DoDo, if you join TPAUK.com (it is free), they have a list of places where you can get NDT and T3 from for members.   Unfortunately there are no private doctors prescribing T3 anywhere near where I live so I have to take my chances of getting NDT and/or T3 without a prescription wherever I can.   I therefore do not know about where to get the makes that you mention, but there are others on the groups who do.    Just a word of warning for anyone here who is contemplating trying T3/NDT please do not just go ahead and do it.  It would be helpful to get a private blood test done to find out if in fact you do need this.  If on thyroxin you must lower it for several weeks before starting T3 and that should be a slow and gradual process, although quicker raised than thyroxin.   For those who have thyroid symptoms I would still suggest going to your GP first.   Although any thyroid diagnosis or non diagnosis cannot be relied on anymore, they can at least eliminate other conditions which hypothyroidism can mimic.   Diabetes itself has many symptoms in common and as I also have pernicioius anaemia I can say some of those symptoms are similar too.    Fibromyalgia is another one.    My mother in law was thought to be getting dementia - because she was in her late 80's, but it turns out when she resumed taking her thyroxin, she was back to normal.


----------



## mikeyB (May 18, 2019)

AndBreathe said:


> In terms of your assertion that "folks never had it before", do you feel the same about diabetes, because folks certainly didn't have that in such numbers either?



I didn’t actually say folk never had it before, just that it was rare. Certainly the same applies to diabetes, which is reaching epidemic levels now. That’s real, for sure. 

Incidentally, when I was a GP everyone with diabetes got a blood test in kit and strips. Because it is getting commoner, NICE have decided it’s not worth testing because it’s costing too much, not because it doesn’t help with control. 

I do agree with your comment about a spider’s web of implications, though.


----------



## AndBreathe (May 18, 2019)

mikeyB said:


> I didn’t actually say folk never had it before, just that it was rare. Certainly the same applies to diabetes, which is reaching epidemic levels now. That’s real, for sure.
> 
> Incidentally, when I was a GP everyone with diabetes got a blood test in kit and strips. Because it is getting commoner, NICE have decided it’s not worth testing because it’s costing too much, not because it doesn’t help with control.
> 
> I do agree with your comment about a spider’s web of implications, though.



Apologies.  We pedants need to stick together.

@Lilian - Thank you for the TPAUK website.  I'll sign up there too.

My GP has just agreed with me that I appear to need some T3, so now just a case of getting it.  Reading our area's prescribing criteria, they don't agree with combined therapies, and hold great store by TSH +FT4, so I many have some challenges, in area.

If in area fails, I understand there is someone very good in Oxford, but I'd rathe keep things simple if I can.


----------



## TheClockworkDodo (May 20, 2019)

@AndBreathe and @Lilian - just wanted to say thanks for the helpful information, and that I'm not ignoring you, just struggling with my (severe) brain fog, and can't seem to get my head around thyroid-related stuff at the moment, so haven't been able to reply.  At some point I will try to take in the things you've told me (there's another thread here with things about thyroid too, which I need to go back to and read properly) and look into my options.

AndBreathe, I meant to say, sometimes I find the things I write when my brain fog is particularly bad are extra-clear because I make such an effort over them - maybe you did that with your letter to your GP.


----------



## AndBreathe (May 20, 2019)

TheClockworkDodo said:


> @AndBreathe and @Lilian - just wanted to say thanks for the helpful information, and that I'm not ignoring you, just struggling with my (severe) brain fog, and can't seem to get my head around thyroid-related stuff at the moment, so haven't been able to reply.  At some point I will try to take in the things you've told me (there's another thread here with things about thyroid too, which I need to go back to and read properly) and look into my options.
> 
> AndBreathe, I meant to say, sometimes I find the things I write when my brain fog is particularly bad are extra-clear because I make such an effort over them - maybe you did that with your letter to your GP.



For mŷ thyroid things, I almost always have a telephone consultation, as no examination is required. On that basis, I almost always write to her beforehand with my thoughts, meaning she's had time to think or take Endo advice on (something she admits out of her comfort zone).  It also ensures I don't forget anything important.


----------

