Thyroid disease 'being over-treated' bbc.co.uk/news/health-48265023
Certainly NOT my experience - left treated until I was virtually dead and had to argue for a thyroid function test when antidepressants were suggested! Good job I did or I’d have died of hypothyroidism.
Are we mounting a counter attack to this utter rubbish?
See also:
I was like you , but we complain that docs take no notice of symptoms and go by blood results alone. Maybe some just out of range folk ,and remember lower ranges apply elsewhere in the world , without any symptoms and who may never get symptoms are being treated.
I've just read this too. 2 of my daughters were really sick and the docs only did the TSH test. In the end I wrote to their doctors in disgust, eventually the docs did the antibody test, one daughter's numbers were through the roof, doc was amazed (😡) other daughter's were very high as well.
The NHS doesn't test for thyroid antibodies, I had to go private and guess what? My thyroid antibodies were about 100 times over the limit! In fact right off the scale.
My girls got their antibodies done via the NHS, it took a bit of pushing and maybe not all labs will do it but it's worth trying, makes no sense to me to only do half or less of a blood test!
I went private for the test
We are forced to if we want to look after our health 🙄
This is just awful, I've just read this and I'm hoping mad! I feel so upset for people trying to get a diagnosis with 'in the range' results and feeling really ill. 😞
So many things wrong with this article. The fact you cannot write a comment below also annoys me.
I think instead of saying it's "overtreated" they should be looking at why a rising number of people are suffering these symptoms and abnormal thyroid blood levels.
More research needs to be done on finding the different causes as everyone is different, also there is absolutely NO mention of Hashimotos or thyroiditis or conversion issues which might be why that Thyroxine didn't work on symptoms in those "studies". The UK inparticular needs to start looking at the person as a whole not just individually treating each issue without making any connections.
Also as we know on here "mild" or "subclinical" blood results do not always equal mild symptoms.
They have made so many generalisations!
Thyroid patients commenting on FaceBook's BBC Lifestyle & Health page …
Brilliant! Thanks for letting me know.
Utter garbage.
Far to often treatment "doesn't work" because they leave patients on ridiculously small dose of Levothyroxine. Not because they don't need treatment
Or poor conversion, poor vitamins etc etc
How many thousands of CFS or fibromyalgia patients do we see turn up on here with thyroid levels way off
SlowDragon So true about ridiculously small doses of Levo. I was kept on 50mcg for several years, and felt so ill! I am well now, on NDT, but sometimes wonder if just a higher dose of Levo would have sufficed...
50mcg is only starter dose
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH under one) and FT4 in top third of range and FT3 at least half way in range
New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 that TSH should be between 0.4-1.5 when treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking Levo thyroxine
Also to test vitamin D, folate, B12 and ferritin
sps.nhs.uk/wp-content/uploa...
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
NHS guidelines on Levothyroxine including that most patients need somewhere between 100mcg and 200mcg Levothyroxine.
Also what foods to avoid (note recommended to avoid calcium rich foods at least four hours away from Levo)
nhs.uk/medicines/levothyrox...
NICE guidelines
cks.nice.org.uk/hypothyroid...
The initial recommended dose is: For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.
This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response.
The usual maintenance dose is 100–200 micrograms once daily.
Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine
(Many of us need TSH nearer 0.2 than 2.0 to feel well)
See box
Thyroxine replacement in primary hypothyroidism
I got a measily 20mcg or perhaps it was 25mcg. My TSH went from nothing (thyroid death throws) to 110 in about 2 weeks. I had awful heart pains (had them for over a decade - just a thing women get of menopausal age according to John Ratcliffe hospital, despite both abnormal ECG and excercise stress test, & nothing to worry about 😳 they should try a dose of angina and see if they think it feels normal). Hence that stupidly low starter dose and I was kept in it for 3 months despite feeling completely dire. Given the number of times my heart survive thyroxine spikes over the years surely it could have coped with 50mcg and rapid increases to get me back to something vaguely human again....not being left for 9 months with hellish and unneccessary suffering not to mention what I went through before diagnosis, being fobbed off that despite thyroid disorder being in the family my symptoms were nothing to do with my thyroid they knew with a crystal ball of course why bother with blood tests when you are psychic?
Just read this and was going to post something very similar to what you have! What utter rubbish!
I’ve tried 3 times to write a reply without swearing and this is the closest I’ve got 🤬🤬🤬🤬🤬🤬
😂🤬🤣🤬😂 in sympathy!
This just sent chills through me when I read it. I was persuaded to see *** once by a private HRT doctor who was worried about my thyroid. He is a most unsympathetic, smug man. He told me I needed bariatric weight loss surgery and that there was nothing wrong with my out of range thyroid results. I cried on the way back to the station after I left him. He was expensive and uncaring and devoid of empathy for why a woman who was fit, active and slim suddenly turned into a fat sloth incapable of any exercise. That was probably 4 years ago. I've been fighting the establishment ever since.
I can see where an article like this is going to go. A refusal to increase dose to try to optimise our health.
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Couldn't agree more!!! When I read it I panicked and thought here we go...
This is awful, I hope you are feeling better. X
This is the third such posting of this issue so far this morning which doesn't help in having a pan-forum debate about it. As most of us presumably won't have seen the original source data being referred to or even know which studies they were, nor have seen the report arising from the meta analysis that's led to this, nor even had sight of the BMJ guidance, it might be inappropriate to be getting hot under the collar at this point, in the absence of the facts themselves rather than as a result of the BBC's or the Daily Mail's journalistic interpretation of the facts. In principle, over-diagnosing can of course, be as problematic as under-diagnosing, just in different ways and with different outcomes; and one person 's experience of failing to be diagnosed in a timely manner does not negate the fact that others may have been over-diagnosed, nor obviate the need for accurate diagnosis in all cases. In general I'm not surprised that some people might be being over diagnosed just as I'm not surprised that some have the opposite experience; and we shouldn't be getting hot under the collar that ipso facto, it's being suggested that over diagnosing happens; rather it might be more useful to look at the detail of what underpins that conclusion having been reached.
If there was a decent search facility I would not have posted I did try and check. If you can give me the links to the other posts, I can I will add them to the original post, if It can be amended.
I’d like to know who all these people are, who are being force fed Levothyroxine when they feel perfectly well! Where is the rush of GPs deciding a well person must have a thyroid disorder and putting them on medication with no medical or clinical indications of the disorder? How on earth are these people getting the medication if they feel well? Antidepressants and statins I could agree are dished out like dolly mixtures whether you want them or not, However nothing I have experienced (and others here) or read about chimes with this article. I also think there is a lot to be worried about with this type of media reporting on hypothyroidism. Who on earth in the general population is going to plough through medical sources just to check if what is reported is really valid.
So there’s not enough proof that thyroid treatment works? Funny that, there’s plenty of evidence that treatment is inadequate. Oh wait, perhaps this is the same thing - treat underactive Thyroid with Levo and patients don’t get well, either because the dose is too low (to achieve mythical ‘ideal’ TSH) or because patient can’t convert Levo sufficiently to T3 ... but I thought researchers and doctors were clever people? 🤭 where can it have gone wrong?
More like they have no effect because we are bloody under-treated and not given enough! Grrrr! 🤸🏿♀️🥛
Has anyone read the papers that that were reviewed in the BMJ review? I strongly suspect it was papers that focussed on older adults only, studies that looked at TSH only and where T4 and T3 were not optimised in patients.
It seems it could be another paper for clinicians to get in a tiz about use as a reason to keep people untreated and undermedicated.
Also Worrying that the paper has started talking about people with a TSH over 20!
I saw the treating people with a TSH of 20 bit and I though, they better not start using that as a guideline as many people feel pretty horrific at that point!
Yes that was my thought!
We don’t understand it, we haven’t got time to treat it, CCG don’t want us to spend money on it... the solution is... it doesn’t exist. Sorted!
It's so counterproductive it's ridiculous!
I felt horrific at anything on Levothyroxine - suppressed, between 0.2 -0.5 and anything above just got more and more horrendous although mentally the lower numbers really did for me as I was more acutely aware of how truly awful I felt, at higher numbers one is just putting energy into getting from moment to moment with no capacity for any reflective contemplation. Only NDT has restored me to a reasonable level of normality.
OMG TSH over 20 - these people are mad - why do they think people with a healthy thyroid never get much above 1.5 ish do they think thyroid hormones are some sort of biological expendable extravagance not exquisitely and finely tuned by the thyroid to ensure we function like a well oiled machine. It is only when it all goes wrong that their importance is only too apparent and what chaos a lack of them brings.
Thyroid antibodies – is there a point testing?
Systemic Thyroid Hormone Status During Levothyroxine Therapy In Hypothyroidism: A Systematic Review and Meta-Analysis
Kidney Disease and Thyroid link
