Hi everyone, I’ve had a diagnosed thyroid issue for 10 years now, I’ve spent most of them years feeling like rubbish with very little direction from my doctors, over the last year I’ve gained alot of knowledge around thyroid function, and how best to take my medication…
I take it every morning around the same time with a glass of water, and I don’t have any food, medications or caffeinated drinks until at least 30 minutes after which helps with absorption.
I’ve had my TSH tested 4 times in the last 10 month, and the results were 2.89, 2.36, 2.05 and 2.49 (normal ranges at my UK doctors is 0.49 - 5.23) - currently taking 100 microgram a day
what I’d like to know is what is the optimal range, the place where people feel best at, since my doctor doesn’t give any guidance on this, I’d like to get my thyroid function in the best zone possible now I’ve stabilised it, I have been experiencing symptoms lately of tiredness, dry skin, coldness, muscle and joint pain, irritability, itchiness and muscle cramps.
thanks in advance
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MarvelDC
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'what I’d like to know is what is the optimal range, the place where people feel best at'
This is an individual thing, as we are all unique, but typically, many need their TSH to be below 2 and nearer to 1.
That said, TSH is only part of the picture. Ideally, FT4 and FT3 should be tested alongside TSH, as these can often shed more light as to why you may be experiencing symptoms.
Thank you, I have done some research, and lots of different source recommend levels between 1 and 2, I did try 125 microgram at one point but I developed symptoms of an overactive thyroid, and my TSH was 0.56, so I’m going to try 112.5 microgram and hope this will put me between 1 and 2….
I have a blood form to test my TSH, T4 and T3 so I’ll use that in a month to see what my results come out as….
Do you have and guidance on optimal levels for T4 and T3 levels??
Even though you have a GP request for all three, it is highly unlikely that you will get anything other than TSH tested. NHS labs almost always over rule what the doctor has requested for thyroid tests, and will only do FT4 if TSH is out of range.
FT3 won't be tested unless both TSH and FT4 are out of range (i.e. TSH below range with FT4 above range).
It is for this reason that so many members here have no option than to do their own private testing. We mostly use the private testing labs listed on the Thyroid UK website here thyroiduk.org/testing/priva...
For the basic TSH, FT4, FT3 test, MMH (Monitor My Health) is a useful lab to use because it's an NHS lab that also does private testing. If you need to show your results to your GP in support of a change in thyroid medication prescription, your GP is more likely to accept and take note of the results from this lab than many others.
If you hurry, you can purchase a kit now with 20% discount (code BLACKFRI20), and hang in to it until you want to use it. monitormyhealth.org.uk
(Other testing companies are also running discounts over the BlackFriday weekend)
FancyPants54, ' it's not fair to tell people they won't get it '
I did say 'it is highly unlikely '.
We know this from the many thousands of members here over the years that have constantly had these tests refused by the labs. I fall into this category too.
If you've always had these tests done through your local NHS lab at the request of your GP, then you are one of the minority of fortunate people.
[Edit] I think it would actually be more unfair not to warn someone that they may not get the tests done, rather than let them wait and be surprised if their long awaited test results only come back with TSH. Forewarned is forearmed.
I suppose so. But there's nothing special about my area, it can't be that it's unique in this respect. One of the labs is in the Oxfordshire area and I assume the other must be Northamptonshire. I have friends who have had to wait for ages for appointments and surgery in both of those areas so it's pretty much following the norm in those respects.
I just want to add this is very much a post code lottery type thing. My local NHS lab has not ruled over my GP on blood requests for all 3 even one week later after the first lot of tests.
When I spoke with the lab, what I did discover is what gets tested is based on which drop down option is picked by the GP on their systems and a few GPs in my practice are unaware of this so I had to tell them to point it out.
MarvelDC you can wait and see if your lab tests all 3, as I did, or go ahead and get private at the same time. I’ve been getting both via GP and private at the same time anyway to compare and contrast.
Edit: To be fair, my Practice can’t seen to request FT3 only T3. And sorry, Red Apple, just noticed these points raised between you and another poster.
Healthstardust 'this is very much a post code lottery '
I couldn't agree more. There may also be differences between the four nations of the UK. Not everything in Wales, Scotland and N.Ireland works the same as it does in England.
If all labs happily tested all three, MMH would not have seen a viable market to begin offering their NHS lab for private testing. (As I recall it, thyroid tests were their first venture into the private testing market)
All that said, there's also the possibility that some labs have gradually started being more lenient and less dogmatic about the whole issue. i.e. beginning to recognise and acknowledge that TSH is not the be all and end all of thyroid health. Which could of course be a consequence of influence from this forum - we would like to think so anyway 😊
I think there is a lot to be said and owed to the affect of the internet and forums such as these, including within the NHS. Including thanks to the advent of private testing for those of us lucky enough to afford it.
For example, the other day I had to reschedule an hospital appointment, completely unrelated to endocrinology in every way, and yet as soon as I said to the person who answered the phone, I note here I presumed she was a female, that I need to move the appointment due to hypothyroid symptoms the first thing this lady said was something along the lines are they (medics) increasing your dose. I explained it’s all underhand but I believe she would have had the knowledge to tell me exactly what to do. Anyway, appointment moved to couple months time to coincide with possible increases. It was a breath of fresh air, and mild shock that I was speaking to someone who got it, and probably wasn’t even in a clinical role as such.
There is the cumulative affect of the acute Covid years which has also opened many a health care professional eyes to the disparities that exists in the system.
I am not lucky enough to experience good care, or experiences within the NHS so when it does happen it stands out!
' It was a breath of fresh air, and mild shock that I was speaking to someone who got it, and probably wasn’t even in a clinical role as such.'
Perhaps s/he is hypothyroid herself or has a family member who is. Maybe even a member of this forum! Either way, I suspect there are many, many more informed patients out there than there are informed medics, and some of those informed patients could be working in the non-clinical roles.
Patients have a vested interest in being open minded, are willing to study the research and experiment, to the extent of self medicating if necessary. Medics have no vested interest in doing anything other than follow outdated rules and prescribing the least controversial medicine. After all, they are not the ones living an unnecessarily lowered quality of life, which in turn can affect their family, their income etc. etc.
Perhaps s/he is hypothyroid herself or has a family member who is. Maybe even a member of this forum! Either way, I suspect there are many, many more informed patients out there than there are informed medics, and some of those informed patients could be working in the non-clinical roles.
Exactly. And, if I was working in the NHS I would easily be one of them too. Patients or their family members who also work in the NHS also have a vested interest in seeing the system work for others.
In my personal experiences, although too early to tell with endocrine services, I have often experienced better care from the younger generation of clinical staff who for whatever reason appear to be more open minded and exploring options with patients. I think the reason has to do with a generation of people who have also experienced poor care with the declining NHS who now work within it.
I am having interesting experiences with all manners of medical professionals within the NHS (good and bad) since my hypothyroid diagnosis. There is a appetite to learn more about it.
'Do you have and guidance on optimal levels for T4 and T3 levels??'
As with TSH, what's optimal for one person may not be for another. Typically though, most people need their FT4 to be towards the upper end of the range, and FT3 to be at least 50% through the range.
We take symptoms into account alongside the test numbers in order to find where our own individual levels need to be to feel the best we can.
6-8 weeks is helpful for stabilising the TSH. But after four weeks, FT4 and FT3 can be a useful indicator of how things are looking in terms of T4 to T3 conversion.
Have you optimised vit D, vit B12, folate and ferritin to support thyroid function/ conversion....vital!
There is no universal optimal range, as humans we are all very different with different dose requirements....unlike a range of machines that can all be calibrated to a set point!
I’d like to get my thyroid function in the best zone possible now I’ve stabilised it
If your dose/ thyroid has been "stabilised" you should be symptom free.
A full thyroid test to include TSH, FT4, FT3, vit D, vitB12, folate, ferritin and thyroid antibodies TPOand Tg will point the way forward.
Your symptoms suggest under medication....possibly poor conversion and/or nutrient deficiency.
But...if you can post these labs ( or minimum TSH , FT4 and FT3) we can then comment further.
MarvelDC Welcome to the forum, excellent advice above as usual, I have a few little things to add that might be helpful for you.
When I've requested bloods for "T3" or "T4" I've variably received everything from T3 Uptake to Total T4 and all sorts of other things I still don't understand and that were not at all helpful. What DippyDame wrote above is clear: TSH, FT4, FT3, vit D, vitB12, folate, ferritin and thyroid antibodies TPOand Tg. And ideally all at once - at least for the first comprehensive set of bloods - as you start out building a trend in your blood test results over time.
Also, I read in a previous post of yours that you are taking a multivitamin. To quote advice I've read on this board - multivitamins are frowned upon for us thyroid folks. They either have too little of what we do need (our thyroid issues usually interfere with the absorption of essential vitamins/minerals so we often need much more than healthy people) AND they often have things we should NOT have (like iodine... even in smaller amounts. Search this forum for iodine and you'll get more info).
Lastly - the how & when of taking your blood is essential - as well as being consistent across your blood tests over the months/years. You can search this forum for better advice than I can give, but things like doing them early morning (like 9 am) (because what you're testing for is impacted by our circadian rhythms), stopping anything with biotin (I think a week before the test) and no Thyroid meds before (last T4 24 hours before, and T3 if any 12 hours before.) Not doing this or being inconsistent makes it almost impossible to get solid conclusions and guidance.
I spent a year getting pretty useless blood tests before I learned from this board. Further, once you do the above, you may also want to search this forum for the usefulness of TSH. The medical establishment does NOT understand it, the "ranges" are not helpful, ESPECIALLY once you are on any thyroid hormone replacement, at which point it is the things Dippy Dame listed (FT4 and FT3) that become most important.
If I'm wrong on the above, I hope to be corrected. And I always recommend searching, reading, and re-reading posts on this forum, especially from Admins, for all the best advice to sink in. Everyone has an opinion, but everyone has their own unique situation.
I just wanted to correct you/add some more information on the use of multivitamin and why it is not recommended on the forum, as well as on absorption.
Firstly, usually multivitamins have the wrong type of vitamins ie less bioavailable eg folic acid instead of folate. Secondly, in multivitamins the different vitamins and minerals counteract each other as they need to be taken away from certain others for a number of hours eg iron should be taken 2/4 (can’t remember exact number) hours away from other vitamins and minerals for best absorption.
Finally, generally the reason often cited on the forum for lack of absorption of vitamins and minerals be that from food or supplements is due to low stomach acid.
And T3 varies between FT3 (most commonly) and TT3.
May you explain this a bit more as I don’t follow? For example, when my GP has ordered FT3 I normally get back Serum T3 level. I assume FT3 and T3 can not be used interchangeably? And when I have checked my local lab ranges for all blood tests, it doesn’t appear as though FT3 is even available for testing, which equally makes no sense. Is it possible the T3 in my test is FT3? I’ve just assumed it is TT3.
Once again, I’m reminded of the phrase the mind boggles.
If it just says Serum T3 level - you do not know whether it is Free T3 or Total T3! Both are measurements of how much T3 is in your blood serum.
Free T3 and Total T3 are different things. If you have loads of T3 - both will tend to be high. And the opposite if you don't have much T3.
But there are things which tend to affect Total T3 specifically. Like oestrogen levels. That makes Total T3 a more awkward thing to think through. Also, it is obvious that T3 that is bound ios not available to be transported into cells.
You can always tell which has been tested if you have the reference interval!
There is much, much more Total T3 than Free T3. Of the order of 300 times more.
A quick check of the numbers I have shown. First note that Total T3 is in nmol/L and Free T3 in pmol/L. The unit nmol is a thousand times the pmol.
And the numbers for Free T3 are around three times those those of Total T3. In the example, 3.1 is just over three times 0.9. And 7.5 is exactly three times 2.5.
That is, there numbers show around Free T3 at about 3/1000 of Total T3.
Just 0.3% of all T3 is free.
While lab ranges vary a bit, this level of difference is always obvious.
Does that make sense? Does it help?
Table showing typical reference intervals for Total T3 and Free T3.
Aha! I think that means I have been having Total T3 blood test this whole time as reference intervals are reported as nmol/L [0.9 - 2.5]. At least 2 of my GPs thinks this is the same as FT3!
What I still can’t work out mind is why I can’t find a FT3 test on my local NHS lab ranges webpage. FT4, T3 is are there but no FT3. It does not make sense that there would not be a FT3 blood tests as it’s a critical test for diagnosis for hyperthyroidism as I understand it. Perhaps some areas only use TT3 I wonder. Either that, or I’m not researching hard enough.
And, seriously, thank you! Once again, you are a blooming star. This is so very helpful when one’s brain isn’t quite up to scratch.
I’ve had my TSH tested 4 times in the last 10 month, and the results were 2.89, 2.36, 2.05 and 2.49 (normal ranges at my UK doctors is 0.49 - 5.23) - currently taking 100 microgram a day
Just testing TSH is completely inadequate
You need TSH, Ft4 and Ft3
Plus both thyroid antibodies tested at least once
Also test vitamin D, folate,B12 and ferritin at least annually
your results suggest you need dose increase
Approximately how much do you weigh in kilo?
Get FULL thyroid and vitamin testing as next step
TSH should be under 2 as an absolute maximum when on levothyroxine
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
The only thing I will add here is that many years ago I had many of the exact same symptoms as I did at the time of diagnosis some months ago. At that time my TSH (less that 2) and FT4 (around 16) were checked and within range (though I’d have to check the exact range numbers but I believe they looked reasonably good). Of course no FT3 or T3 were tested. However, I highly suspect that at the time I was severely hypothyroid.
In short, don’t trust the numbers too much. Use them purely as a guide within limits. Go with your symptoms, experiment a little with medication and over time you will recognise the unique pattern of symptoms for you. There’s only one normal range and that’s yours, which will also fluctuate from time to time.
They have taken the tick box for T3 for the surgery away here. (West Wales). Even if the nurse writes "takes T3" on the form, they never do it. They say you need an Endo to order it.
I have just waited 9 months for an Endo to order it, and he has written "please, please test T3" on the form, but he was still dubious that they would do it.
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