OK, sit down and tie a cushion to your head, so when you hit the roof you dont hurt yourself.
I requested why T3 was not tested. Here is the reply, sent on the last possible day.
NICE guideline (NG145) Thyroid disease: assessment and management states:
“In general TSH alone is an appropriate first test for people in whom thyroid dysfunction is suspected. Subsequent tests are only needed if TSH is abnormal (with FT4 if the TSH suggests hypothyroidism and both FT4 and FT3 if the TSH suggests hyperthyroidism). This approach reduces unnecessary testing compared with simultaneous TSH, FT4 and FT3 testing for all people”.
The detailed guidance can be accessed via this hyperlink:
The UHB uses an All Wales Laboratory Information System (LIMS) which is set up in exactly the same way for all Health Boards across Wales. Currently, unless a patient is stated to have treated Hypothyroidism, the UHB offers Thyroid Stimulating Hormone (TSH) and free Thyroxine (T4) as first line tests. Free T3 would be added automatically in some situations, such as where there is suggestion of Hyperthyroidism or may be added by Clinical Scientists at the time of authorisation. If a patient is already on Levothyroxine for primary Hypothyroidism, then TSH only is the first line test. Free T4 may be added, depending on the TSH result, although the requirement to add this at all is being considered nationally within the laboratory network, as guidance would suggest it is not routinely required. When national decisions are made regarding thyroid testing protocols in the All Wales LIMS, the advice and endorsement of the Welsh Endocrine and Diabetes Society may be sought.
Therefore, after seeing many inappropriate free T3 requests, and in the spirit of prudent and value based healthcare, a decision was made by the Clinical Scientist Team within the UHB to restrict free T3 requesting from Primary Care, knowing that it can be added where needed.
The head of the Endos here will not allow anyone to take T3 and boasted about a patient of his who is on 500 Levo and he was thinking of putting her up to 600 as many symptoms remained. So no point fighting this with him.
The last line - knowing that it can be added where needed - how? My GP practice is fighting this, so how?
My TSH is 0.01. So they do the T4 to check, I suppose for Hyperthyroidism. But if your TSH is below the minimum, how could they know if you are taking thyroid medication?
I want to go back to All Wales LIMS and fight this, so need your input please.
I hope the cushion worked!
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serenfach
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Unfortunately I read before attaching suggested cushion. It ought to have been included in the thread title.
Best bit: although the requirement to add this at all is being considered nationally within the laboratory network, as guidance would suggest it is not routinely required.
Why would this ever be a rational conclusion? And how is this guidance formed?
This approach reduces unnecessary testing compared with simultaneous TSH, FT4 and FT3 testing for all people.
How do they KNOW it is unnecessary testing?
On what grounds would Clinical Scientists add Free T3? Bearing in mind that they have never met the patients and have very limited understanding of their background.
The ONLY downside of Free T3 tests for all that I can fathom is cost. How much cost is saved when it is taken into account that patients want it, some GPs want it, lab time spent refusing it and attempting to justify refusal.
Has LIMS researched the possible cost savings from doing all three with optimised supplier contracts which do all three every time rather than FT4 and FT3 being "special" and likely relatively more expensive?
The reply leaves us to infer that it is almost impossible to have a TSH within its reference interval and FT4 and/or FT3 not acceptable. Is the lab willing to supply some (anonymised) real lab data where all three were performed? (Obviously, having refused so many FT3 tests, there are questions over the inherent selection bias.)
The Welsh Endocrine and Diabetes Society has no obvious link with any dedicated thyroid organisations whatsoever.
The Pituitary Foundation has a place, but almost all aspects pof thyroid testing ASSUME no pituitary issues.
The Society for Endocrinology has its place but spends much of its resources on all the non-thyroid issues.
Adding FT3 "when needed" is nonsensical. It will in the real world only ever be added when requested by an endocrinologist. And lack of adequate GP/primary testing is a major reason for patients to be refused referral, or have referral delayed.
”Adding FT3 “when needed” is nonsensical. Don’t you just love it when someone can cut right to the chase? I thought I caught the substance of this post but on rereading, I am impressed by your proper assessment of the reality of our situation. I tend to go ‘wild’ when I try to add up what this means. What I mean is I am so angry at the injustice and ignorance combined that I can’t see altogether clearly. I am responding emotionally. Your highlighting of this simple phrase really does take the whole picture into account. I saw a fairly old piece of research with Professor SimonPierce’s name on it. He was possibly supervising it because really it was a terrible bit of research (although it’s my understanding that doing research means running it by your superiors in the first place). Now that ‘I know what I know’, I see it as him setting up GPs, nurses etc for failure and most importantly giving the likes of him, the total power over the ”It will in the real world only ever be added when requested by an endocrinologist”. He was setting up this ‘carte blanche’ situation (with supporting research) so that every medic in the country can/must refuse T3 but most especially, the power resting with himself. This man is on a mission. Whilst it is important for powerful people in particular to be single minded; that must also be balanced by the ability to keep their minds open. This powerful man has only his mission. It’s very dangerous to have the ‘open minded’ part missing, in whatever you do in life. Otherwise you become dictatorial. This is what we have in our own backyard. Who would have thought we have our own battle within the UK against a dictator? His statistics prove this.
In my area of Scotland, t3 is not routinely tested at GP level as knowledge and expertise of t3 and treatment is deemed to be at consultant level.Once t3 has been prescribed by the consultant and care returned to gp level, the GP surgery will then test t3 as they are responsible for prescribing it now. But any changes in dose or problems are referred to the endo team again for advice
This all clearly demonstrates, yet again, the total inability to take the patients needs into account. They have their minds fixed and clearly can’t see anything they might or could, be looking for. The system is designed to address their limited scope. They and only they, are the clever people. So there!
So many opportunities for research being missed, entirely through a saving of pennies. So no future information available to examine. It’s criminal.
Unfortunately, or fortunately for me depending on how you look at it, even though I live in Wales, my endocrinologist services are supplied over the border in Shropshire and my FT3 and FT4 are tested every year alongside the TSH, so my situation is not quite as bad as yours. Before I was referred to an endo, however, the only thing that did get tested by the GP was TSH and, before I found this site and forum, always got the same result…”normal”. Then I started educating myself here and eventually asked for a referral to an endo as I felt horrible on the 200mcg Levothyroxine they were giving me and I was sent to Shrewsbury. The rest, as they say, is history.
Thanks for the input. I now intend to write to LIMS asking the questions you have raised. I will try and write it without too many "you idiots" and "FFS" included. I will let you know if I get an answer.
Its OK to remove the cushion now, before you go shopping....
Would an interesting question to ask with your response be " Please clarify how many of your endocrinologists are diabetes specialists and how many are thyroid specialists?"
The question occurs to me because I lived in Wales. The prof of endocrinology I saw ( I can't with all honesty say he saw me), who dismissed me and my many hypothyroid symptoms, was in fact a diabetes specialist. So was the 2nd one I saw privately. At that time I was naiive. I thought all endocrinologists were specialists in the endocrine system ...all of the endocrine ssystem.
If that is legitimate (and as both have been running a long time now so that seems beyond doubt), could the Wales labs offer FT4 and FT3 tests as add-ons? I am imagining that the lab would be able to defend the charge by saying they see no (or not enough) value to do it on the NHS - so not charging for an NHS service because they are not offering that. But as they are doing TSH anyway, there would be no need to charge extra for phlebotomy, etc. And the results would end up in your NHS records - I'd hope.
And the lab could get a small increment to its income.
Far from ideal, I know, but at least a little better than paying all the extra costs of blood draw (if needed) and postage.
(I've just thought they could make it into a sort of competition as well! When you order FT4 and FT3 you predict the result. If they are within a defined closeness ("Within a gnat's crotchet") of the actual result, you get it free - maybe a voucher for a future test?
Totally ridiculous. But that is what the system as it is does to our brains.)
Serenfach I'm having a bad spell at the moment but I'm following. I'm in Wales. I'm so heartened to know you are writing back with questions. If they reply, you can write back again. And again. Building a case.
I wish I could help but brain won't.
You have my total and utter support, and thank you for doing this. X
I intend to ask, given that the medical profession is so adverse to prescribing T3 for all its "dangers", why not test those on T3 (in any form) to see if they are in danger?
Given that T3 levels effect the heart so much, are those with any heart problems and on any thryroid drugs going to be tested? And if not, why not?
Given that T3 levels effect the bones so much, are those with any bone problems and on any thryroid drugs going to be tested? And if not, why not?
So sort of bounce their disinformation back at them.
I also want to add the cost savings of simply testing blood instead of sending us for scans, more GP appointments, waiting times for Endo's, other drugs we are given to try and shut us up. If they can see a simple cost saving of a test costing 91p against a whole Endo appointment, maybe something with click? This false economy and playing with peoples health is just wrong.
I tend to mull things over, write a bit, leave it a while, read it again, add or take away bits...so if anyone wants to add ideas they are more than welcome.
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