tests: can anyone please tell me what [ if any... - Thyroid UK

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alangardner profile image
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can anyone please tell me what [ if any ] definitive scales are inplace----because on checking this site-----for f3 f4 tsh and some others [that do not apply ] .....depending on where you live-----IS THERE ANY STANDARD SCALES THAT WE AS NORMAL PEOPLE CAN REFER TO.......that we can all check OUR results and maybe decide where to address OUR problems and then ' HOPEFULLY ' resolve our health issues------because the different scales leave me confussed

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Moggie profile image
Moggie

Is this what you are looking for.

thyroiduk.org.uk/tuk/testin...

Moggie x

alangardner profile image
alangardner in reply toMoggie

no, on reding many blogs on this site the one thing i find very confusing is that many people have totally differant scales i.e. [ t3 can be ---3.55--5.44--..and i have these in in print from our endo---] i feel that too many different 'specialists' drs hospitals or trusts HAVE THERE OWN levels before they HAVE to treat the 'PLEBS' like us .......as a medical idiot [ as i am ] where are the standards across the board....

Moggie profile image
Moggie

Dont think there are any - if anyone on this site would know it would be someone like Rod. That is why when someone posts their results we always ask for ranges as different labs have different ranges (just to keep us morons on our toes I think).

Moggie x

alangardner profile image
alangardner

there HAS to be or how could a dr diagnose ---if you move to another area----your new test results [ if he uses another guidline/instruction from the trust/ area that he is/she is governed by ] my own dr has been trying to stop this practce for at least the past 10 yrs ---to no avail---AND I HAVE AN EXELLENT GP------i posted the factual results for the last 10wks of my lady 2 days ago....very few answers.....but too many scales [ to us idiots ] do not relate to each other....WE NEED TO GET TO A STANDARD so that we can all relate to all test results to help or advise on sites like this to the people like us that need it. that way ther may be a sort of uniformaty and it will not matter where you are WE will all have the CORRECT diagnosis and---MORE IMPORTANT-----the CORRECT treatment

shaws profile image
shawsAdministrator in reply toalangardner

Alan

It is unfortunate that labs do different ranges and that is why we ask for the ranges when results are given as that, at least, gives a clue.

alangardner profile image
alangardner in reply toshaws

shaws, my question is WHY are there so many different 'ranges' -----standardise the tests to at least give all our gp's a fighting chance to help---even if they are not 'au fait' with the problem........the more different ranges/scales or indeed instructions that are in place [ to the gp's]----[that they HAVE to adhere to ] ------please set standard [ and more important ]keep to that standard so that we can all see where we sit/stand/jump/or at least know where we are ---------the different ranges have different 'values' according to whatever trust area you are being treated by ----VERY CONFUSSED

shaws profile image
shawsAdministrator in reply toalangardner

I totally agree. We have said that all along that it would be much easier.

I am not medically qualified and I doubt if there are many on this forum. It is run by volunteers. Most have lots of knowledge through fighting their way through reams of information to try and get better. Some still unwell.

Once upon a time, people were diagnosed according to their clinical symptoms as there were no TSH blood tests at that time. Unfortunately, modern day doctors appear not to take clinical symptoms into consideration whatsoever and just diagnose by blood test alone, which makes many people very. very unwell.

I, myself, (over a period of three years) despite seeing gp's, specialists (two) having a barium swallow, overnight stay in the cardiac dept and discharged as 'probably viral' a friend I don't see often suggested a thyroid gland problem. I phoned the surgery and said I had visited the A&E and needed a thyroid gland blood test form and, only through having a husband, managed to get to the blood test dept in the local hospital at 8 a.m. By 10 a.m. my GP phoned and asked how I had got a blood test form (she only worked part-time) and told me to come immediately to get a prescription for levothyroxine as I had hypothyroidism. It was a disastrous period of my life.

Thankfully I am well again now.

alangardner profile image
alangardner in reply toshaws

so glad to hear your well..but i would like to ask ----if your 'gp'--part time-- and then prescribed levothyroxine [without examining you ] is this the norm for 'LOCUM' gps or have i got a gp that actually cares about his/her patients...........or 'if we actually think about it ' am i being a little tooo radical---after all i am only asking for what i believe is my right---and EVERYONE ELSES.......or do locum's work by test results without checking with the patient----ie US

shaws profile image
shawsAdministrator in reply toalangardner

She only prescribed because my TSH was 100. She was phoned by the Lab that I had hypothyroidism. After a few months I asked to be referred to an Endocrinologist which she did.

Never in my life would I have thought that I would have to learn about a condition which, on the face of it, seems simple. Give them a replacement hormone and blood levels are now fine - any other complaints - like incapable of standing/walking due to severe stifness/pain. Insomnia, severe palpitations/tachycardia and feeling more ill than before diagnosis. Sent to a neurologist (pain), cardiologist (heart) no problems.

I do not think that many GP's unless they have got a thyroid gland problem, do not get well on levothyroxine, or get more clinical symptoms can even envisage how bad one can feel. You may be prescribed, beta-blockers for heart, painkillers for pain, anti-d's because you keep complaining (although depression/anxiety can go hand-in-hand with hypothyroidism).

You change your medication to one which is not in the guidelines and - magically all problems resolve.

Another GP told me when I complained that levothyroxine was making me more unwell: the only way you can prove that is to stop taking it! What advice is that? Most only go by what they have been taught and that is diagnosis by the TSH blood test and think icomplaints are all in the mind, I believe.

No doctor,specialist or hospital despite having quite common clinical symptoms ever did a thyroid gland blood test. It didn't occur to them. Neither did it to me as I hadn't a clue at that time. It is a hard lesson.

Hello Alan, I may be wrong if so I will be corrected but I believe the different ranges are due to local population in different areas of the country's' normal range' therefore levels will be different dependent on which area one is living in. (Bit cranky?)Also GPs can prescribe as they see fit they are not held by any inflexible rules there are guidelines but they are not set in stone.

alangardner profile image
alangardner in reply to

my problem is.....what does the population in my area as opposed to your area have to do with the treatment of ANYONE that has a particular condition .......or is it factual that if you live in an area that has a high 'heart problem' you will get better treatment than if you live somewhere else----------or are you saying that ALL AREAS OF THIS COUNTRY ONLY SPECIALISE IN THEIR OWN AREAS--------that is not my or indeed the ideals of the NHS------this is a national service[ SERVICE being the correct word ]

helvella profile image
helvellaAdministrator

Alan,

Tape measures and weighing scales work largely because there is a piece of metal (in Paris) which is exactly one metre long, or weighs exactly one kilogram.

In one way or another, every tape measure and every weighing scale in the world is compared against the standard measures. So we can be pretty sure that they are very close to the standard.

But when you are dealing with something that is more complex, there is no simple way of having an absolute standard.

People who make laboratory blood test machines know this and, I am sure, try to do their best. Unfortunately they do not have a nice set of standards to use in order to calibrate their machines.

Every so often, someone comes up with an improvement. One example is that TSH used to measure very high if you had a certain type of antibody. So they introduced ways of making sure that antibody was not allowed to affect the TSH test. The result of this was a reduction in average TSH measured. But it took years from the first recognition of a problem to the situation in which most machines have been changed. Until they have all been changed, you couldn't help but have different ranges from different machines.

We all live happily enough with cars having speedos that are allowed to over-read by 10%. We manage. Sometimes we think someone is breaking the speed limit because our speedo says we are doing 70 - but they overtook us. Other times we might be the ones wondering why the car ahead is only doing 64. Depends which car we are in.

I am quite sure that if the issues could be solved easily and quickly (without costing too, too much), then they would be. And work is going on to try to achieve that. For now, we have to accept that every test result must be read in relation to the reference ranges at the lab they were processed at.

Rod

PS I know the metre doesn't depend on the piece of metal in Paris any more - but it did for quite a number of years.

alangardner profile image
alangardner

thanks for your reply, but , i am not questioning the speed limit i am questioning ' LIFE THREATENING SITUATIONS' as some of the blogs on this site can testify to ther must be some kind of standard test that ALL gps have to adhere to......it apears to me ----after the blogs on this site ----- that it depends on how good your gp /hosp/endo /specia;ist is as to how good your treatment is-------after all are they not all reading from the same songsheet----i would reiterate that it appears that we [ I ] seem to be one of the lucky one's with regard to this problem

helvella profile image
helvellaAdministrator in reply toalangardner

No - there is NO such number.

There are old guidelines, now under the authority of NICE, but nothing actually produced by NICE.

There is NO WAY to take a test result number (say, TSH = 30, or FT4 = 40) and translate it from the scale used at one lab to the scale used at another.

I posted a blog some time ago about the possibility of extreme variations from one lab/machine to another:

thyroiduk.healthunlocked.co...

Once you move out of a relatively narrow band of TSH, FT4 and FT3 numbers which are either within reference ranges, or not too far out, you are usually dealing with very sick people. And blood test results very often confound in such sickness. Not only thyroid-related ones - but many others.

I have certainly seen people with extremely high Free T4 (raging Graves' disease) post here that they had been told to go home and wait for an endo appointment to come through - possibly months away.

And you could certainly have a perfectly ordinary TSH and yet be near myxoedema coma.

For some medical tests there are well-founded reference ranges which are widely implemented and fairly consistent.

Rod

Marz profile image
Marz

....some of the best recovery to wellness stories have been achieved by listening and acknowledging the very knowledgeable people on this forum. The experience of so many here is amazing and in many cases far better than any GP/Endo. Nothing to do with results/ranges - just experience. Good people look at the whole person and LISTEN !

In my case ranges meant nothing.....in the UK I would still be told I am NORMAL - now what is normal ? - but here in Crete I was treated as I had anti-bodies tested and a scan. TFT's all in range. So listening to symptoms has to be paramount. Even if there was a GOLD standard as you suggest - thyroid illness would still be missed if signs and symptoms were ignored. So what's the point ?

alangardner profile image
alangardner in reply toMarz

marz ' in no way am i suggesting a 'gold ' standard ,but what i am questioning is why is there such a difference between a gp in ---say , kent and a total different result ----from the exact same test results---- in maybe aberdeenshire....surely the same results should mean the same diagnosis and therefore treatment---FOR ALL OF US .......please check all of the blogs on this site because ther are many many that appear to suggest that there IS a lottery as to where you live or how good your gp/endo/hosp. actually is.....i reiterate that i have an excellent gp that knows the meaning of the word CARE in the so called careing proffession......god knows what i would do if i didnt

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