It's OK to let sick people suffer as long as th... - Thyroid UK

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It's OK to let sick people suffer as long as the % is low

vocalEK profile image
21 Replies

I felt a surge of outrage when I read

"RESULTS:

Following the two-step approach, 93.0% of all 4471 participants had normal TSH and would not need further testing. The two-step approach would have missed 3.8% of all participants (169 of 4471) with a normal TSH, but a fT4 outside the reference range.

CONCLUSION:

The two-step approach may avoid measuring fT4 in as many as 93% of individuals with a very small risk of missing thyroid dysfunction. Our findings do not support the simultaneous initial measurement of both TSH and fT4."

ncbi.nlm.nih.gov/pubmed/297...

So this is the attitude? We don't care about those 169 people? It's only 3.8%.

If it's a matter of money, why not offer patients the option to pay for the FT4 test out of pocket, with the assurance that, should they be found in need of treatment, the charge would be refunded.

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vocalEK profile image
vocalEK
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21 Replies
Marz profile image
Marz

....

And the FT3 test - it's under a pound !

in reply to Marz

SHHHH, "T3" is a naughty word. Or maybe blasphemy!

At least the expression of horror I got from one medical professional at merely mentioning it gave that impression.

Except for a reluctant mention of T4, which is allowed in some circles, the only respectible T (besides a cuppa) is the one coming before "SH..." :-D :-O

vocalEK profile image
vocalEK in reply to

You mean T-shirt? ;-)

in reply to vocalEK

😂

pennyannie profile image
pennyannie

It is totally unbelievable and simply unacceptable but is probably a reality and true.

Where do we go from here ?

It is very disturbing, on so many levels.

humanbean profile image
humanbean

I wonder how much it costs to do

1) TSH first then FT4 later if TSH is out of range?

compared to

2) TSH and FT4 from one blood sample?

diogenes Do you have a comment on this so-called research? Lots of us have or have had TSH that doesn't reflect FT4 and FT3 status. Are there any other diseases as common as hypothyroidism that are treated as badly? I know there are several diseases which are not diagnosed very readily, but I don't think they are so common as hypothyroidism. Is it because the sufferers are mostly female?

SilverAvocado profile image
SilverAvocado in reply to humanbean

I think there is a lot to wonder about with why it's so bad. As well as the sexism, which must be a big part of it, conventional medicine is also terrible with chronic illnesses in general. I believe that most patient groups are pretty angry with doctors. I found it in cancer, too, which is theoretically more acute - altho many cancer patients are v grateful and believing of course.

diogenes profile image
diogenesRemembering in reply to humanbean

I simply make the statement I believe in: Symptoms and presentation should dominate diagnosis, not biochemistry. If the symptoms strongly suggest underfunction then therapy should be tried at 50 ug T4 to start with. 25 for older people. A 3 month trial of T4 should show some effect if the problem is there.

diogenes profile image
diogenesRemembering in reply to humanbean

These people also falsely try to justify themselves further by showing that at both extremes of range for FT4, most outside the range are 2 pmol/L or less away from the top and bottom limits. This seems small, but for the lower limit, 2 pmol/L is nearly 20% different from the lower limit and 10% different from the upper limit. But we know that the inaccuracy of the tests is less than 5% in both cases (around 3 actually). This means these subjects cannot be classed as "outliers" by any respectable statistical argument; they are truly "outside the range" and thus pathological. The attempted fudge doesn't have legs. Wishful thinking to justify the unjustifiable!

Fruitandnutcase profile image
Fruitandnutcase

Alas I’ve come to the conclusion that a lot of what appear to be quite normal looking people just don’t care unless something affects them.

Only today I had coffee with a friend and I was surprised and horrified at her dismissive attitude to something that happened recently and that I found shocking - I know for a fact that had the boot been on the other foot and it had involved her child things would have been totally different - so I can see quite easily how those poor souls are just written off by people who are in the fortunate 93% who don’t need further testing. If something doesn’t affect them then who cares is the attitude.

vocalEK profile image
vocalEK in reply to Fruitandnutcase

Sadly, there's a lot of truth to what you say.

SilverAvocado profile image
SilverAvocado in reply to Fruitandnutcase

I think you're right, and had a little chuckle at 'quite normal looking people', unfortunately I think they may be more normal than us!

Another example, in discussions of Brexit recently I've seen a handful of times people poking fun at the idea there will be medicine shortages, or suggesting that it will do people no harm to go without for a few weeks. Both in serious political discussions and just to get a laugh.

This seems completely consistent with how society sees illness and disability in general :p

Christabel profile image
Christabel in reply to SilverAvocado

I've also seen what you describe in your second paragraph. A lack of empathy that's quite shocking.

SilverAvocado profile image
SilverAvocado in reply to Christabel

Yes, I think it really shows how big the stigma is about illness and disability. Society at large just doesn't invite people to imagine how it would feel to go without vital medicines and be in huge discomfort and danger.

The idea that the levels of TSH, T4 and T4 can always predict you being ill or not simply does not stand up to scrutiny if Levothyroxine monotherapy is being administered.

Without a thyroid gland you (normally?) will NEVER feel well ever again whatever dose you take, whatever "extras" you may take, whatever foods you avoid, whatever exercise you take, whatever readings the above 3 hormones may be. I had 8 years of all that nonsense, only NDT will give you relief.

Athyreosis should be treated separately from other thyroid afflictions, a category of its own, not simply linked in with the other issues that a thyroid can have.

Gcart profile image
Gcart

I find the same thing . Few people have empathy for others in my opinion .

It’s a form of discrimination which isn’t recognised.

Christabel profile image
Christabel in reply to Gcart

I saw an item on the news yesterday about the increase in hate crime, which seems a similar thing - no imagination or empathy - and have seen some horrible comments online about the WASPI women. All the same kind of thing, people unable to imagine what it's like to be someone else.

vocalEK profile image
vocalEK in reply to Christabel

I suspect a lot lies in how you were raised. My mother always used to say to me, "How would YOU like it if ...." Fill in the offending speech or behavior. So, unless there is something biologically wrong, I believe empathy can be taught.

SilverAvocado profile image
SilverAvocado in reply to vocalEK

Another side to it with discrimination about sick and disabled people, I think it's all part of a huge denial about illness in the whole of society.

I think people literally don't realise that being sick or disabled would change everything about their life and mean letting go of most everything they value and care about. I think their first assumption is that disabled people live almost the same life as them, and that a lot of the fuss that gets made is just silliness.

I find when I talk to people about my disability, often things will come up that they are hugely upset or shocked about... And I sometimes wonder why, because it's usually quite a small thing for me... I think it's because they just haven't thought through how much my life has been impacted, or all the huge implications of each thing I'm not able to do.

I haven't had a really clear example recently, but a not so great example, I am hoping to go and do an activity with able-bodied people, soon. I mentioned to one person that the reason I don't want extra stress is because I am likely to get a heart arrhythmia incident over the weekend, and even tho it's very likely just due to the exertion, I want to maximise my chances of not getting one. She was very shocked and started saying that I shouldn't go at all if there are heart concerns. But if I thought that way I would be even more reduced in what I can do than I already am. This is a once we year event, and I take reasonable precautions to avoid injury, infection or other mishaps... But I can't rule out any risk, because that's just the way it is with an illness like ours.

So what does all that mean in practice? That it's almost impossible to actually get access to the information?

Yes

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