I'm sorry but after reading the responses and articles after my last post few days ago, I find myself more confused than before! I wasn't initially worried that my TSH remained the same (even though I had reduced my dose by a third of a grain in March) but now I have read that a TSH of below 0.04 can pose a risk of loss of BMD and fractures, I am worried since I have severe osteoporosis and have six spinal fractures already.
I also don't understand why my FT4 should now be higher than it was In March even though I reduced the dose. It doesn't seem to be correct in relation to the FT4 which has dropped!
Am I being too picky about these results? Should I be reducing my dose further? I would be very grateful for some help and insights.
Thank you so much
Ann
Written by
wisewoman108
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Sorry to hear about the Osteoporosis. The link between a suppressed TSH as a result of thyroid hormone replacement due to hypothyroidism is NOT proven. There is no body of research proving this. I don't know why they persist with it!! It's scaremongering.
edit mean to reply to wisewoman , clicked wrong box soz wavey..
Wise woman ... don't get too hung up on trying to compare the fT4 and fT3 exactly with previous test .. exact comparison is not possible due to using different test machines / ranges
and don't get too hung up trying to explain why fT4 has not lowered despite lowering your dose ,... these things just happen ands we can't always explain why.. i've had same issue ~ lowered dose, and fT4 went UP (GP assumed i was taking more . but i wasn't )
Your fT3 is comfortably in range at roughly 50% , but we do know the fT4 is still 'pretty high' and so yes , you could consider trying a slightly lower dose again , if it will make you feel more comfortable that you are looking after your bones as best you can. and there are other good reasons for not wanting fT4 higher than it need to be .
Re. the study showing TSH lower than 0.04 increased fracture risks .. it's important you understand that this study was looking at the TSH of Levo patients ..but because you are taking NDT which contains T3, you will have a relatively lower TSH than these people for the same thyroid hormone levels .
.........So you shouldn't assume you have the same increased risks as those patients did when your TSH is lower than 0.04 .
It is not the low TSH level itself that causes their increased speed of bone loss/ osteoporosis/ fracture .. it is the higher levels of thyroid hormone which cause this (fT4 / fT3) ... so it's not your TSH you should be concerned about, or basing decisions on, it's your high fT4 levels that are showing a bit of a red flag at the moment .
..... it's not a 'screaming' red flag because you know your fT3 is very comfortably in range, (assuming you tested at 8-12 hrs after last dose of NDT ?) ....so don't panic about it .... fT3 is the active hormone that is having any effects on your bone , not T4 .
you have two choices :
either :
stay on same dose for another few months then retest to see if fT4 has come down by itself
or,
lower dose slightly again now and then retest in a few months.
Since the bone loss is obviously worrying you a lot , on balance i would suggest you do try a small further reduction in dose and see how it feels for a few months .. that way you:
a) find out if you can manage on a lower dose .. (and we should all by trying to take 'the lowest dose we need' so it's never a bad idea to see if we do still feel ok on a lower dose)
b) put your mind at rest that you are doing something constructive to get fT4 lower rather than just sitting there with it high.
c) increase the likely hood that your TSH may rise a little bit .. but as said already it's not the TSH that increases bone loss/ worsens osteoporosis . it's high thyroid hormone levels which do that .and that mainly means high fT3 ..... there is no logical reason to think high fT4 'by itself' is capable of increasing bone loss as long as we are sure that fT3 is comfortably in range when tested 8-12 hrs after last dose.
Tattyboogle you test NDT 24hrs after not 8-12hrs. The ft3 uptake of NDT has a much slower uptake and drop than liothyronine. You might want to look up Diogenes post on this. 😊
thanks , yes i'm aware that 24hrs protocol can safely be used with ndt , but went with writing 8-12hrs in this case ... not sure why really ..... w.w was concerned about overmedication due to bone loss , so i felt seeing a test at 8-12hrs is a good way to get some added reassurance that fT3 levels are never going too high.
I get it Tattyboogle but the protocol is 24 hrs. Tbh you are more likely to get much bigger high/ low swings with Liothyronine then NDT. NDT is far more even..Technically at 8-12hrs the uptake of ndt wouldn't be at its peak in a one off dose but because the life is so much longer.... it evens out.
The bone loss arguement is really not proven. There is no body of research which is the gold standard. My Endo told me it's a political hot potato and so long as you keep your Ft3 in range you will be fine.
i'm happy with what i wrote on this occasion, and my reasoning for it ,... on another occasion in different circumstances i might have written 24 hrs as i am aware of the naturally 'slow release ' qualities of NDT .
We didn't have dose timings for either of these tests at the point i wrote it , my original comment was partly to gather more precise information about how long/ short the gap had been for the results given .. one of which was over range and was indicated to to be false low.
In the case of someone with already serious bone issues , i'm happier to be erring on the side of caution in my replies . My thoughts about bones are never based on TSH , they are based on how high the T4/ T3 level are for an individual .
I'm never comfortable insisting that that "anywhere in range is always ok" for fT3 ... any more than i would agree with a GP saying that "anywhere in range" is ok for TSH .
We can test anything anytime we want , there are no fixed rule or protocols ... as long as we understand what is we are seeing on the test when we test at various different time gaps then anything goes.
on this occasion i chose to ask if there had been an 8-1 2hr gap , because that is what i wanted to know.
note, i didn't say everyone should test NDT at 8-12 hrs . i just asked a question.
i don't think this needs anymore discussion on this post . i'm aware your thoughts are that NDT should be tested at 24 hrs , and by an large i 'd agree with you.
I agree this isn't the place for a discussion on this. I do want to say though it's not my 'view' or 'thoughts ' it should be 24hrs re NDT levels testing but the recommendation of high experienced well recognised thyroid specialists and the research presented by NDT manufacturer showing why with it's much much slower uptake.I'm not medically trained and nor am I scientific so my 'view' is irrevelant.
I'm not critiquing you just presenting the standard protocol and the reasons why. I felt that was important. I'm not medically qualified so I cannot go beyond that. 😊
No worries wavey , i get the point you are making about 24 hrs . i just don't agree with your use of the word 'should',
posing this theoretical question for consideration in our future discussions on this subject .
given the slower/ smoother uptake which we know from experience , and the 'longer than 24 hrs to peak fT3' from that data diogenes found .
what would we expect to be seeing if we tested 3 or 4 hrs after last dose of NDT.
what would we expect to be seeing if we tested at 8-12 hrs after last dose NDT .
what would we expect to be seeing if we tested 24 hrs after last dose NDT.
it would of course be interesting to continue that to eg 36 hrs , but obviously that is getting too far into the realms of 'theoretical', because in reality we need to take it every day.
Beyond me Tattyboogle... I'll just stick to what I've been advised by knowledgeable thyroid specialists. The 24hrs thing isn't theory but something that's been the standard practise since blood tests came in. Before that it was done successfully on signs symptoms and a physical examination... None of which medics take much notice of these days or are trained in, mores the pity. Sounds like your proposing more research to me. I thought that's what the manufacturer data had done though showing the gradual increase and tail off 😊
I'm new here and after my post the other day and all the replies I received ............. I give up on the numbers game. I'm not numerically dyslexic by any means but it seems to me to be a movable feast based on wherever your surgery is. 😱😱
I don't know if you can explain but you have test results and latest figures. So, what are the sets of figures, i.e. the left column and the figures in brackets. I am assuming the left figures are actuals from tests whereas the figures in brackets are guidelines or target figures that represent a normal reading ??
Don't worry if you can't answer ... hopefully .... someone will be able to toss in their threepennyworth and answer your question and mine.
eg let's say you receive a result of freeT4 17 [12-22]
[12-22] is the "95% population reference range" ( ref. range / lab range / 'normal' range )
To get a 95% population ref range, the manufacturer of the test machine uses blood samples from 'healthy' people and removes the highest and lowest 2.5% of these results. the remaining results form the top and bottom limits of the 95% population ref range .
you will see lots of different ref ranges for fT4 . eg [9-21] or [7.9-14] and others.
They are different because there are several manufacturers of fT4 test platforms , different platforms use different techniques to separate the free T4 from the total T4 , and this results in them having different ranges .
BUT..... the information they give is the same (even though the range numbers are not) ... so you get a result (in this example '17') that shows how your level of freeT4 relates to the levels of Free T4 found in 95% of the healthy population .
So 17 [12-22] means you are bang in the middle of the range of results that healthy people are found to have. (you will see that expressed on this forum as "50% through range" , we convert fT4 results to '% through range' to be able to compare results easily with those using different ref ranges )
if you took the SAME blood sample that gave you this result of 17[12-22] and processed it on a different platform that was calibrated to a [7.9-14 ] range , you would expect to get a result that was also about 50% of the way through the range.
eg. you would get a result of about 11 [7.9-14]
both 11 and 17 are correct results for the freeT4 level you have . but they must be interpreted with the lab range used to get the result.
Same principle applies for why there are several different fT3 ranges (and TSH ranges, but TSH ranges nowdays are more standardised at around [ 0.4 -4.5] ish )
where is the best place to be in the range ?... this is very individual .. healthy people have been found to have levels all over this range from 0% to 100% . that is how the range was formed .
but we know that it is 'most common' for healthy people to have TSH around 1 ish .. not very many will have TSH over 2.5 , and hardly any will have it at 4... so we know "1 ish" is good place to aim for when trying to adjust dose , but it doesn't mean 1ish will be best for everyone in practice (some may feel better at 3, but they would be unusual)
Same principle with Free T4 and Free T3 levels, but these are much more varied across individuals ... see this sample of 10 healthy people in image below .
Their TSH / fT4 and fT3 results have already been converted to % through range .
Some of them have their usual fT4 and fT3 well over 50% , some have them well below 50% .. some have fT4 a bit higher than fT3 .. some have fT4 a bit lower than fT3 .
But as a general rule in healthy unmedicated people, their fT3 and fT4 are relatively close together, eg you don't see many healthy people with fT4 at 95% and fT3 at 5% .
and as a general rule, TSH will be relatively low .. you don't see many healthy people with TSH over 50%
Thank you very much for going to the trouble to post all that data. I'm afraid I'm a numbers man and don't handle the written word too well. The outline that you provided makes much more sense to me.
So when I spoke to the clerk in my GP Surgery and asked for my Thyroid test results and was told it was 0.303 .......... she was actually doing me a dis-service because she was only giving me a small part of what seems to be a big and complex picture.
No wonder my head is spinning like a top !
I will be on the phone in the morning to my surgery and asking for a photocopy of my TOTAL Thyroid test results. It might help me (along with your input) get my brain around it all before the next lot of tests.
It all makes my Warfarin INR testing a walk in the park.
benhall, They may have only tested TSH ,so there may not be anymore thyroid results from that test.
testing just the TSH is (unfortunately) very common .
TSH ranges are 'much of a muchness', so knowing the range for TSH doesn't matter so much .
the 0.303 is most likely a TSH result .
it is most likely 'only just below' the ref. range. but yes get them to give you the name of the test (TSH / fT4 or fT3... and the [ref range], preferable as a printout ~ it's all too easy for them to make mistakes with decimal points when asking for results verbally
when they said 'low thyroid' they don't mean 'low thyroid hormone levels (hypothyroid)' , they mean low TSH ......low TSH usually indicates slightly high thyroid hormone levels (T4/T3).
TSH goes low when T4/T3 are higher ,... and TSH goes high when T4/T3 are lower.
Depends on local lab policy what is tested routinely.
Some will only test TSH routinely .
some will test both TSH and fT4 routinely .
some will only test fT4 if TSH is over range ( called 'TSH with reflex to fT4' )
they will hardly ever test fT3 (even if GP asks for it !)
With very low TSH ...that may automatically trigger fT4 and sometimes fT3 to see if patient is very hyperthyroid ( too much thyroid hormone) as this is potentially dangerous .
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Confused!
Very odd results...
Cam someone explain in simple terms please?
