Labs in Western Sussex NHS instructed by CCG no... - Thyroid UK

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Labs in Western Sussex NHS instructed by CCG not to test FT4 unless TSH is out of range!

SmPea
SmPea

In the last 6 months a new system was introduced into my local GP surgeries that does not allow FT4 to be tested unless TSH is out of range. However the labs fo test TSH and FT3! So I can only get half the picture of my thyroid status! I am considering contacting the CCG about this ridiculous instruction to GP’s and labs. Does anybody have a neat description and medical evidence that a full thyroid panel is needed to manage the treatment of Hashimoto’s (which I have). I am having to pay for private blood tests I can’t really afford. I had to give up work 4 years before I can have a pension due to my health. I have been poorly treated by NHS as have countless others. Thanks to the great information on this forum I am slowly making progress to reach optimal health. All I want is to be able to check my bloods twice a year - the NHS can’t even do that. It’s a scandal that people with this condition are treated so badly.

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That is rubbish. The T4 needs to be taken to exclude secondary hypothyroidism.

It's that some people don't have an accurate TSH reading when on thyroid meds. It can just stop working! How can you tell if you have a conversion issue, and many do, if you can't compare FT4 with FT3? It just illustrates they don't understand thyroid issues and so put money and dicing with someone's health first! To me it's common sense to test everything or there's no point in testing at all when it doesn't give the full picture.

There’s tons of peer reviewed published scientific papers and research which all demonstrate and argue convincingly why TSH alone cannot be trusted. You could google the issue with various combinations of search phrase and come up with many if not all the links to relevant document which you could then pass on to your CCG. I would also initiate a complaint through PALS, indeed that is exactly what I am doing to ensure that the lab tests all three indicators, the triple lock thyroid function test of free T3 free T4 and TSH.

SmPea
SmPea in reply to Hashihouseman

Many thanks I will google, just thought someone on here may have something they could pass on to me swiftly! I will certainly contact PALS too.

Hashihouseman
Hashihouseman in reply to SmPea

One of the links I had in mind no longer exists so I will try to paste the article in here..

I can't get the graph to paste, which is annoying because its a great expression of the data

............

The most common questions that Thyroid Australia is asked involve the interpretation of Thyroid Function Tests (TFT’s). Many people have been told that their TFT results are ‘normal’. So what is ‘normal’? In this article we will focus on the test for Thyroid Stimulating Hormone (TSH) which is the most common test ordered.

The ‘normal’ Reference Range for the test is intended to represent the range of values which can be expected in the healthy population – ie those without any thyroid ailment. The Reference Range is found by taking a sample population of healthy individuals and determining their TSH levels. The lowest and highest

2.5% of readings are excluded so that the Reference Range covers 95% of the healthy population. There are a number of different tests for TSH with different levels of sensitivity. They each have their own Reference Range. The most common tests generally have lower limits to their Reference Ranges around 0.2 to

0.5 mIU/L and upper limits from 3.5 to 5.0 mIU/L.

A recent study in Norway provides a good example of the use of the TSH test in practice. 1 The study involved 65,000 people. They were asked questions about their thyroid status and those with a history of thyroid illness were excluded. The blood samples were tested for Thyroid Peroxidase Antibodies (which are an indicator of likely thyroid illness) if they produced a TSH reading greater than 4. Samples with positive antibody results were also excluded. The survey, therefore, attempted to exclude people with any indication of thyroid illness, but still included those with Thyroid Peroxidase antibodies whose TSH reading was 4 or less. The TSH test kit used for the study had a nominated Reference Range of 0.2 to 4.5 mIU/L.

The results for women are shown in the chart. The results for men were only slightly different.

The features of this result are:

The distribution of TSH readings in the healthy population is skew. It is not the common bell shaped curve centred in the middle of the reference range.

The most common value, or Mode, is at 1.25.

The Median value is at 1.50. This means that half the population (50%) have a TSH reading below 1.50.

The average, or Mean, value is at 1.68. Over 60% of the population have a TSH reading below this value.

The centre of the Reference Range for the test kit used in the study is 2.35. Almost 85% of the healthy population have a TSH reading below this value.

The 2.5 percentile point (ie the point which excludes the bottom 2.5% of the population) is at 0.48. The 97.5 percentile point (ie the point which excludes the top 2.5% of the population) is at 3.6. The range between the 2.5 and 97.5 percentile points (0.48 to 3.6) is much narrower than the test kit’s Reference Range (0.2 TO 4.5).

This narrowing of the range would suggest that the reference group used to calibrate the test kit possibly included people with some level of thyroid illness.

This narrowing of the range between the 2.5 and 97.5 percentile points would potentially have been even more pronounced if all samples had been tested for Thyroid Peroxidase Antibodies.

The conclusions which can be drawn from this survey are:

TSH results in the upper half of the Reference Range have a low probability of being ‘normal’. This does not mean that they are not ‘normal’. It means that they are unlikely to be ‘normal’.

The Reference Ranges for TSH tests are potentially too wide, especially at the upper end. This suggests that ‘high normal’ TSH readings should possibly be treated with more suspicion than they currently appear to be. The centre of the Reference Range is clearly not a good target point because very few of the healthy population have TSH readings around this point. A much better target point would be around 1.0 to 1.5. But some people will feel better at higher levels or lower levels. This supports Prof Jim Stockigt’s view that the target should be a TSH reading around 1.0. 2

Another important point which needs to be borne in mind when interpreting statistics like these is that it is the population which has a range of values with probabilities for each reading. Each healthy individual is only at one of the points. They are ‘normal’ when they are at that point. For those on thyroxine replacement, being in the Reference Range is not good enough in itself. You need to be at your own set point. This will probably be near the lower end of the Reference Range.

This analysis of the distribution of TSH readings in the healthy population supports our recommendations to thyroid patients:

Obtain a photocopy of all your Thyroid Function Tests. Also get copies of the ones you have had done in the past. These copies will show both the readings and the Reference Ranges.

When you are going for a new test, make a note of how you feel (especially make a note of any of the major symptoms of thyroid overactivity or underactivity), your weight and your dose. When you obtain your copy of the test result, write this information on the copy. Over time, this process will allow you to make an informed judgement in consultation with your doctor of what the correct set point is for you.

Do not accept that a Thyroid Function Test is 'normal' just because the result is within the Reference Range if you are still feeling unwell.

References

1. T Bjøro et al, 'Prevalence of thyroid disease, thyroid dysfunction and thyroid peroxidase antibodies in a large, unselected population. The Health Study of Nord-Trøndelag (HUNT).' European Journal of Endocrinology 2000 143 639-647. Download here.

2. J Stockigt, 'Subclinical Hypothyroidism or Mild Thyroid Failure: How important is early diagnosis and what treatment is optimal?' Interview With Sigma Pharmaceutical 2001 thyroid.org.au/Information/.... Accessed 30 December 2001.

Alun Stevens is an actuary with his own consultancy. He is also Secretary of Thyroid Australia

This article is published in our newsletter Thyroid Flyer Volume 3 Number 1 January 2002.

This article can be reproduced provided it is reproduced in full, acknowledges the source and is not sold for profit. (c) Copyright 2001, Thyroid Australia Limited ABN 71 094 832 023 PO Box 2575 Fitzroy Delivery Centre, Victoria 3065, Australia Thyroid Australia Home-thyroid.org.au

Also check this paper out

frontiersin.org/Journal/10....

Hashihouseman
Hashihouseman in reply to SmPea

doi.org/10.1016/S2213-8587(...

Hashihouseman
Hashihouseman in reply to SmPea

journals.sagepub.com/doi/fu...

This one illustrates why T4 at least is essential with TSH given all the factors affecting TSH which can make diagnosis of status from tsh alone reduced to almost entirely guesswork

Hashihouseman
Hashihouseman in reply to SmPea

ncbi.nlm.nih.gov/pubmed/118...

SmPea
SmPea in reply to Hashihouseman

Excellent, thank you.

Good question! One I will ask when

I write to them. By the way the rest of Sussex NHS trusts do not have this ridiculous default when ordering blood tests. Maybe I should ask them what they think of this decision.

I have just had a surprise blood test and guess what, my tsh was below the lower range! Of course they didn’t check T4 only T3 which was in the middle of the range. That caused them to ring me to reduce my Throxine again. I did fight this and the Dr agreed to keep me on my current level of thyroxine as long as I agreed that this was not the NHS recommendation.

SmPea
SmPea in reply to PottyDotty

GP’s hands are being tied by CCG’s. Well done to those GP’s who take the risk in putting their patients first.

They would probably save the NHS a lot of money if the CCGs were disbanded, and GPs and hospitals managed themselves

This has been the case in my area for as long as I have been tested. Not only that, but they don't test Ft3 even when TSH is suppressed and FT4 above range. I have it in writing from the Head of pathology that the FT3 test 'is of little diagnostic value'.

Nessy50
Nessy50 in reply to Ansteynomad

I said to GP last week they don’t test T3 & she said no they don’t, I’ve never had it done & one way to get T4 done is when your TSH is suppressed & they panic.

I live in west sussex too, am about to go to see new gp ( old marvellous one left), due annual blood tests, will be interesting to see if I am too refused t4 and t3 as always tested before, would be interested to see how you get on.

SmPea
SmPea in reply to t3rr

It would be useful to know what happens.

Can your GP issue a form to test TSH, FT4 and FT3 and you use phlebotomist in a neighbouring CCG that will carry out all the tests?

I'm able to do that but don't know whether it's just because my CCG is part of a "supper CCG" containing a number of regions.

SmPea
SmPea in reply to Babette

That’s a good suggestion but my other problem is I have yet to find a GP at my practice who will enter into proper dialogue on my treatment. In the last few months the two GP’s who were prepared to listen to me have left! 🙁

Would like to know about children being tested for ‘central hypothyroid ‘ what is this ‘central ‘

I am also in West Sussex. I have a medication review this week at the GP practice, to which I plan to take my privately obtained blood test results, more to make a point then anything. When my thyroid first went hyper, I saw the practice's senior GP who wanted to test me for something completely unrelated. I suggested that it seemed to be thyroid related to me, to which he basically said "Oh, I suppose it could be. We'll test that too". Surprise, surprise, the results showed I was hyperthyroidal. He then referred me to the local endocrinologist, who said to congratulate the GP for spotting it (shaking head in despair...). I subsequently went hypo at which point the same endocrinologist put me on T4. Since then neither GP nor endo have shown any interest in hypo symptoms as my TSH is "in range". The GP practice seems to be doing their best to not give me access to my records or test results. I returned the form for online access to my records, but they seem to be sitting on it (I'll chase it at the medication review). Anyway, many years later, I got referred to same endocrinologist as I also suffer from hyperhidrosis. I suggested testing adrenals/cortisol. He completely dismissed the idea out of hand. As the (IMHO unnecessary) tests that he did all came back negative, I was discharged with no resolution. After that, I decided to take control myself and got a set of saliva/blood tests done privately. Surprise, surprise - my cortisol level was way high. Whether that's related to (from a thyroid panel that I had done privately a couple of years ago) my high RT3, and right-at-the-bottom-of-range FT3:RT3 ratio, I cannot be certain, but I wouldn't be surprised. I'm having that panel repeated shortly to see if things have changed.

Anyway, to cut a long story short, I now refuse to be referred to that local, NHS, endocrinologist, and know of others locally who do the same. I have also given up on the GP for thyroid/adrenal issues. Tests done privately have confirmed that I don't have Graves, Hashimotos, Addisons, Cushings etc. I am taking steps to sort out my cortisol levels, am weaning myself off medications that were previously prescribed to address individual symptoms as well as stopping supplements that bloods show I don't need (the whole lot ended up with a vicious circle of side effects and treatments). I've also recently switched to NDT. I'll get blood/saliva tests repeated privately in a couple of months to confirm things are proceeding in the right direction. I have had no income for 4 years, but still consider paying for tests and private prescriptions worthwhile. I feel that the NHS locally has failed dismally on these deeper issues (got a sinus infection - fine, got something more complex - hopeless), and your report of FT4 not being tested unless TSH is out of range confirms to me that things are not getting better any time soon. If you can do so, I suggest paying for tests that you think you need if the NHS will not provide them.

(apologies for the length of that - despairing of NHS failings)

SmPea
SmPea in reply to JumpJiving

Totally understand your despair! I do private blood tests when I need to understand what may be causing flare ups/random symptoms and also checking Vit levels as trying to find my optimal levels to feel well.

Having paid my taxes for 34 full working years it is the principle of having the correct blood tests to manage my condition that is prompting me to take this up with the CCG and PALS.

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