Differences from one health authority to another - WHY?

Why is there such a huge difference from one health authority to another??

Where I am, under Wrightington Wigan and Leigh, they are refusing to treat as they state my TSH has to be near 10, and at 3.89 it is 'normal'.

Yet if I go to where my Aunt lives in Wales, she has already asked her GP for advice for me, they would treat me as their upper limit is 4.

So why is there such a huge difference in the TSH range?

Why do we lack behind other countries like America, who has also reduced the upper limit for the TSH??

For a so called developed country, we are sadly lacking behind the rest of the world!!

Ann xxx

21 Replies

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  • I'm new here and new to all this thyroid stuff, so take my advice with a very large pinch of salt.

    I'm a member of a private chat forum and in recent weeks a few members have started taking Nutri Thyroid. You can buy it legitimately over the internet as it is sold as a supplement. They also sell nutri-adrenal.

    It isn't the whole answer, but one member is noticing big changes. I take it along with nutri-adrenal, kelp and my levo. I just take one tablet each of the supplements, but if you aren't taking levo you could probably take more.

  • Have you tested positive for iodine deficiency? If no, then you probably don't want to be taking kelp without knowing your iodine status.

    Do you have autoimmune thyroid disease i.e. Hashimotos? If yes, then you probably don't want to be taking kelp.

    Please put 'iodine' and / or kelp in the search box above right. You will see we've had many, many discussions on here about this.

    Similarly, put Nutri Thyroid into the search box to see the many many discussions about this supplement.

  • Thanks for telling me about that. I think I'll stop taking the kelp tablet.

  • Hi ChemicalAngel

    just a thought.. . . All perscription charges in wales and scotland are free and england are paying/subsidising them, if england had more people diagnosed for thyroid probs there would be less money in the pot to pay for wales and scotland. . . maybe?

    Flatfeet

  • Do you not get a medial exemption when you have a thyroid problem?

  • Yes, but not until your diagnosed.

  • Also . . The THS test a gold standard ?

    NO.. its a joke when nothing is standard,

    when there are different ranges in every country and in every testing laboratory, also when these ranges, it seems, are changed every year.

    I would like to know on what scientific evidence/tests these ranges are set, and who sets them

    Until this can be agreed and STANDARDISED doctors should treat by symptoms.

  • To a very considerable extent reference ranges are established by the manufacturers of the analytical machines and kits. The handful of manufacturers market their machines throughout the world.

    If things are being done properly, the initial ranges are validated against results obtained from a local population of people not suffering any thyroid disorder.

    It would be perfectly possible to hide all these different ranges by, for example, working out a mathematical way of translating the results to a standardised scale. I for one would be very unhappy at that being done because it would end up that every lab, everywhere was in a sense massaging their results to match some virtual perfect scale. Far better, although a pain to us, for each lab to report the results they actually get and the range they establish/validate.

    I would also be much less happy if they did not adjust ranges when issues are found which require that.

    One of the fundamental difficulties is that we cannot readily produce reference samples of blood with specific concentrations of TSH or thyroid hormones in them. So it is very difficult to calibrate one lab to another without, as I said above, doing some mathematical tricks. If we had perfect reference samples then they could be distributed round machines and calibration performed.

    And don't forget that even the most universal tests do vary round the world - things like blood pressure in mm Hg - gravity varies, atmospheric pressure varies - albeit by small margins.

  • Hi Rod,

    Thanks for clearing most of this up for me, but how would they test a local population of people not suffering any thyroid disorder, ? is this by a blood TSH range and what would they measure this against?

    Sorry if i'm being dense

    Flatfeet

  • There is a lot of informatin out there but not easy to summarise. Suggest you search for:

    calibrating validation tsh

    And read some of the papers.

  • Thanks Rod,

    I will do some research.

    thanks again

    FF

  • Ann,

    I do understand your frustration. I would be fuming to be in your position. But let us look a bit further because something does not look right.

    I just looked up the reference range for TSH for PAWS:

    srft.nhs.uk/paws/handbooks/

    Found this document – their Biochemistry Handbook:

    srft.nhs.uk/EasysiteWeb/get...

    Which has this range: TSH: 0.27-4.2 mU/L

    If that is where your tests are being done, you can see that the top of range is not 10 but 4.2.

    Refusal to treat until you hit 10 is not a matter of TSH range as such, but of interpretation. Obviously that makes no difference to you – all you care about is getting treated! It appears that your doctor(s) is in the mindset that anywhere between 4.2 and 10 should not be treated – probably dismissing it as sub-clinical. If you had no symptoms, that might be a defensible position. If it was possibly a one-off slightly elevated TSH, that too might be defensible. However, repeated elevated TSH and having symptoms says to me that treatment is required.

    If you look on the internet you might see something saying that the USA range is 0.3 to 3.0. But that is just as misleading as if you said the UK range is 0.27 – 4.2. Neither is strictly true because in both countries the ranges vary from one laboratory to another.

    In general, the USA has reduced the top of the TSH range faster than the UK. For example, a number of years ago someone woke up to the idea that the TSH range should be established without allowing people who have thyroid abnormalities to be included in the range setting exercise. That is, those with antibodies or any thyroid history at all are now expressly excluded. This did mean that the top of TSH ranges general fell. And the fall in the USA seemed to happen sooner than in the UK. But eventually the tops of ranges did fall here as well. One historic reason might have been that the USA was more likely to be running newer equipment which inherently has tighter ranges.

    Further, I fail to understand how organisations and academic papers repeatedly refer to TSH (and other) test results as if the ranges were static and identical everywhere. All too often, they will refer to exact numbers rather than “at top of range”, “significantly over-range” or whatever.

    Also, do not get too hung up on the North Wales top of range being 4 while yours is, I think, 4.2. That might actually represent exactly the same level of TSH. For example, if you had a single blood sample tested at both labs, at one it might be 4, and at the other 4.2. Whether or not that is the case would be difficult or impossible for you as an individual to establish.

    I also suggest that you always have a blood draw for TSH testing as early as possible in the day. It can drop quite significantly between first thing in the morning and afternoon.

    Rod

  • Thanks Rod,

    I am very symptomatic, and getting progressively worse, and the so called top endo that I saw has told me that he will never treat anyone for underactive thyroid until their tsh was 10!!!

    If he is a so called specialist, why is he not treating the person and the symptoms? Doesnt make sense as one can live perfectly well with a higher tsh, and another will be going through hell with the same levels.

    Frustrated isnt the word. My GP is not very sympathetic either. He is another that wont treat till the tsh is a lot higher - his words.

    Am having a really bad day, really headachy and have had 3 cat naps so far!!!

    Ann xx

  • The endo I'm seeing at the moment (I'm in Scotland by the way) recently told me she would never have started me on thyroxine with the results I had at the time of diagnosis: TSH 6.2. In fact her preferred treatment now would be to wean me off all thyroid meds and see what my TSH did!! (She didn't, she said having been on thyroxine so long she would try and help find a level I could function with, although has now made me reduce it again because my TSH is suppressed). As Rod says it's not really to do with ranges, it's what the Royal College of Physicians say in their guidance on what's classed as Subclinical Hypothyroidism ie if your T4 is in the "normal" range then they can leave you to suffer until your TSH goes above 10. What it actually says is "Some patients [with Subclinical Hypothyroidism], particularly those whose TSH level is greater than 10mU/l, may benefit from treatment with thyroxine in the same way as for hypothyroidism..." so I think it's open to interpretation/discretion.

  • In my PCT (Croydon) the range is up to 3.6 (don't remember the bottom of range), so anything over 3.6 is seen as hypothyroidism.

    My son's TSH came back as 2.6 7 to 8 months ago, I did an fT4/fT3 privately, fT4 was in the boots (at the very bottom of normal), private doctor wanted to treat my son, NHS GP refused to acknowledge anything was wrong with him and told him he needs to go to the gym and play football more often (he stopped as he's too knackered all the time and gets injured all the time!).

    last month re-tested, his TSH was 6.4 or something like that and fT4 at 15 (range 12 to 22) now they are treating him!

  • Blimey thats horrendous!!

    Why wouldnt he treat? Or did he do like mine did, and was peed off that you had paid for testing privately!!

    Glad he now is being treated, and hope he soon feels better.

    Ann xx

  • Hi chem,I had my thyroid results which kept coming back borderline for the last few years but the answer was always we will retest in 3 months.Anyway being knackered all the time when I used to be so fit i knew my thyroid was dodgy.I therefore paid for a full thyroid panel and low and behold my TSH came back at almost 8 and my ft4 was at the lower end of the range and I had over 500 tgab in my blood.Took the results back to my GP who agreed the TSH was high but wanted to recheck it.Anyway TSH came back at 3.9 so he said he would refer me to an endo as the antibodies could be skewing the results.I chose an endo off the thyroid uk list and he turned out to be brilliant.He is also in the Bolton area which would be useful for yourself if you ever get another referral.He basically told me my thyroid will fail sooner or later bec of the antibodies attacking it.He also told me my ft4 was to low for me and my ft3 is having to take up all the slack for my failing thyroid.He wrote to my GP instructing him to start me on 100mcg of thyroxine with the aim of getting the TSH level around or under 1 and the ft4 towards the top of the range.He told me it might take up towards a year to get my health fully back as i would more than likely need up to maybe 200mcg or more for my needs.He also mentioned other thyroid treatments such as natural and T3 but said most people recover on synthetic but there are always exceptions.I would get a full thyroid panel done chem with antibodies checked.

    Cheers

    Ian

  • Ann, I'm afraid it is a bit of a misnomer that 3.0 is the top of the range in the USA. In 2002 the National Academy of Clinical Biochemists, who deal with setting lab standards, finally realized that if you are going to use a group of people to establish the 'normal' range you need to have very strict guidelines so that you are not including subjects who in fact are suffering from mild forms of thyroid problems. After enforcing strict guidelines they suggested the range should be .3-3.0. In 2003 AACE, the American Association of Clinical Endocrinologists came out with a statement agreeing with the NACB, a decision they have probably regretted ever since because much of their membership did not agree. If you look at the 2012 guidelines from ATA and AACE they are pretty much in agreement with the RCP, BTA, and BTF. From whichever bottom you choose to around 4 or 4.5 is "normal", usually, requiring no treatment, and from 4 or 4.5 to 10.0 is subclinical and is up to the doctor whether or not to treat and 10.0+ is considered where there is no question that it should be treated, generally. Rod gave a very good explaination, as he always does, of how and why the ranges can vary from lab to lab.

    Dr. Holtorf says that anything above 2.0 can be suspicious, but he is actually paying attention to the patient. So the standards that we are subjected to by the main standards bodies actually have little to do with what I call 'real world endocrinology' or how our bodies actually work. This is the basic problem that almost all thyroid patients face and why so many of us needlessly lose years of our lives. It is absolutely appalling but it is the system in place. PR

  • Thanks PR. I try.

    My view is that if we happened know our TSH levels throughout our lives, and then saw them taking a jump, that would be the significant issue. Almost regardless of actual numbers. So certainly 2.0 could be a value at which to sit up, take notice and look further.

    Unfortunately, few of us have any idea of our TSH histories.

    It is good to see the myth of super-low TSH top-of-range addressed by someone with experience. It is all too easy to see a few quotes and make unwarranted assumptions.

    Rod

  • Rod, I agree about the history. If electronic records are ever put in place they hold the promise of being an ongoing medical history, and if they would add a hormonal baseline to that occasionally we would have a better chance of seeing when something has deviated from the norm. Of course the real trick is getting doctors to treat the patient instead of the blood test. PR

  • Well we are well on the way to pretty comprehensive electronic records. The problem in that direction seems that, for most of us, there are no baselines!

    And that old records are not migrating their way into electronic records.

    And I am not sure how private records (whether just blood test results or actual care records) can get into our standard records to ensure completeness.

    Treating the patient seems an extraordinarily good idea. Can I patent it?

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