After thinking that I needed to raise my Levo, posting about it… healthunlocked.com/thyroidu.... …and having advice as to the same, I managed to get my blood test about 10 or so weeks later after raising my dose.
It seems that I wasn’t tested for all I had asked for but they only left out those I wasn’t concerned about.
TSH = 0.03 [0.35 - 4.94]
Free T3 = 5.2 [2.6 - 5.7]
Free T4 = 19.2 [9.0 - 19.0]
Vit D = 156.9 [50.0 - 350.0]
So do you think I should stay at 100mcg or go back down to 75mcg? Thanks for taking a look. x
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Ellie-Louise
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Most of the problems that made me ask for a rise seem to be better, but I still feel as if my skin could be less dry. But maybe that’s just down to the winter, who knows. It was just that those results seemed high and I had read here in the past that results should only be a percentage through.
Assuming it's a typo and that fT4 range should read 9-19 ?
It's hard to say if you should try reducing a little or not with those results ..... it's matter of your attitude to 'quality of life now versus theoretical risk factors later'
If last dose Levo was 1am the day before test , and it is 19.2 [9 -19] , then for fT4 to still be over range 30 hrs after last dose , this means it is overrange for all of the time, which shouldn't be a problem , but see ( * ) below
It is perhaps better to keep TSH over 0.03 if possible , as there is some evidence that long term TSH below 0.04 in patients on levo was associated with some increased risks for heart and bone , while TSH between 0.04 -0.4 was not associated with any more risks than TSH in range 0.4 -4 is .
(See my reply to this post for lots of references to evidence /discussion on the subject healthunlocked.com/thyroidu... )
( *There is no current evidence that having fT4 a little bit over range is a problem, but there is a recent suggestion that T4 (in all humans, not just those taking levo) may have some role in the proliferation of cancer.. so we can't confidently say 'it doesn't matter at all' .. there might be reason to avoid having it higher than we need it.... equally .. it might turn out to be irrelevant .. we don't know. )
So i would tentatively suggest that it might be worth at least trying how you feel on a very slightly lower dose , but not as low a 75mcg. (you could try 87.5mcg ie. 75/100 alternate days)
Do you just have 100mcg tablets ?
Having said that .. if these were my results on 100mcg, and if after trying a very slightly reduced dose for a couple of months eg 87.5 mcg ..... if i found i felt less well on 87.5 than 100mcg , i would happily go back to 100mcg without worry.
I have had TSh 0.05 ish for over over 15yrs and my fT4 has often needed to be over range in order for me to feel OK . I tried reducing and felt dreadful and became constipated , so GP agreed to put dose back up (reluctantly )
No I get them in 50’s. I could try a slight reduction as you suggest though it means messing about chopping up. It was easy to break them in half for the 75’s when I took that dose.But worryingly I have noticed that my hair is worse lately, whether that is down to the higher dose or not I have no idea. I seem to remember reading some time ago that taking more Levo can make hair even thinner.
But I take tablets for hair and they had started to work.
I do this - I take 150mcg 6 days a week and 100mcg on Sunday’s - that’s what the private Endo suggested.
Also be wary of 25mcg tablets as I believe only one or two brands do this. If you end up mixing brands you cause another issue into the mix so try to keep things consistent with brands, change one thing at a time.
Well, that’s the thing…I meant to do it properly this time and work out the hours as advised. But I completely forgot and did what I always do, just leave out the previous nights tablet before the test the following morning. I always get my tests done after 8:00 so this one was probably around 8:15-8:30. I can’t find out because I don’t have last year’s calendar around.(These days I take my Levo around 01:00 or so).
So what time would the previous night's tablet have been taken? Assuming bedtime, maybe around 10-11pm-ish, then your last dose (as you left out that night's dose) would have been well over 24 hours, possibly about 34 hours before the blood draw. Is that about right? If so you have a false low FT4, anything over 24 hours will give a false low, and your normal circulating hormone level would be higher than that shown in your test results.
Personally before I did anything I'd make sure I get a set of accurate results. You wont get another test with your GP so soon after this one so maybe consider MonitorMyHealth which does the basic TSH, FT4 and FT3 for £26.10 with code here:
Dose adjustments don't just have to be in 25mcg, that's the maximum, you can do whatever you like based on what dose size tablets you have and either cut them into suitable dose size pieces or take different amounts of Levo on different days to average out a dose over, say, a week or 10 days, this is fine because of Levo being a storage hormone.
It would have been bedtime. I always go up between 1-2 am and take it before I get in.I just assumed afterwards that if I always did the same thing, which I do, that it would make no difference because the number of hours without the hormone was going to be the same anyway.
I can’t afford to pay for private tests.
Edit: sorry, I have just noticed that I missed out the range for FT4. Just added it in. I am over range on that.
I thought the range for FT4 was there before which is why I knew you were slightly over, but I'd looked at the post you linked to anyway and saw it was 9-19.
You've actually mistyped the range above as
Free T4 = 19.2 [9.0 - 9.19]
So your last dose was about 31 hours before the test so your result is a false low.
I just assumed afterwards that if I always did the same thing, which I do, that it would make no difference because the number of hours without the hormone was going to be the same anyway.
It will be but it will always show a false low. If you want a measure of your normal amount of circulating hormone then 24 hours is the time gap. Any longer = false low, taking Levo before test = false high.
Your FT4 result of 19.2 is a false low, if you'd taken your last dose 24 hours before the test it would be higher than than which suggests you are overmedicated. Your FT3 wont be affected so much but might still not be accurate and it's the FT3 result which tells us if we are overmedicated.
Hi Seaside Suzie. Ive been on thyroid meds for 20yrs & I never knew I had to be so accurate in my testing times. I would find it practically impossible to do this on the NHS. Thats because phlebotomy dept at hospital take my bloods & it all depends on how long the queue is. So I've always thought within reason. My blood tests are probably 1-2hrs below the 24hr mark. Doubt this would affect the ft3 much. Might explain why my ft4 was a tadge over rang last time though(.4). Also I've always needed my thyroid hormones close to the top of the ranges & understood that some people need this (endo was fine with it,)....more about what works for each person rather than just going on percentage rates? Maybe I'm out of touch....lol.
I doubt that 1-2 hours would make much difference, if any, but when you're looking at an extra maybe 8-10 hours then this would.
My blood is drawn at the surgery, no hospital here (50-60 miles away), so I always book an early test. The nurses aren't there until 9am so I try to book between 9-9.30am. Blood is collected by driver at 12 noon and arrives at the hospital mid-late afternoon. I refuse afternoon tests because blood sample is kept in fridge until driver calls the next day and I do wonder if the delay causes any problems. I have to have regular blood tests for other things and always ask if Thyroid tests have been requested, if so I refuse them unless I know it's been so long since last GP test that they'll ring me to make an appointment for one.
Because I always have a suppressed TSH which the GP doesn't like then I avoid GP tests as much as possible to avoid the inevitable resulting conversation as GP only looks at TSH and refuses to consider FT4 and FT3, so most of my thyroid tests are private ones and I always make sure that they're done under the exact same circumstances every time to ensure results which can be compared accurately. I'm one of those people who do need to take results into account because I have other conditions which can give me symptoms which could be mistaken for hypo symptoms.
It's always been said here that for the most accurate measure of the normal circulating hormone level then 24 hours is the correct time gap for Levo and 8-12 hours is the correct time gap for NDT and T3, adjusting time of dose the day before if necessary.
Oh wow Susie then I am well out in my timings as have been on a ndt for over 10yrs. Why 15hrs & has there been research to this different timings? My endo & other thyroid docs always told me 24hrs. As these days the NHS only test my TSH & FT4 I've stuck with the 24hrs as theyre not testing my ft3. The only way round this would be for me to buy a Ft3 test and test that myself at the appropriate time. Frankly am not really sure of the benefits for me as am very stable. I do go on my symptoms too.....so I can tell when I'm slightly over. Thankfully as my thyroid is totally dead my dose has remained stable for years. The tweaks required are variations that are down to the medication taken & brand (& any inconsistencies in their active ingredients they throw out like Acella NP did), timings, & a long spell of either very hot or very cold weather. So long as my thyroid hormones are in range & I feel fine I dont worry too much. Maybe that makes me a bit cavalier..... or maybe am just a happy optimally treated hypothyroid girl. 😊
Please don't read me wrong though as I always love your posts as you are very knowledgeable & your posts are thought provoking hence my responses. Thanks Susie. 😊
If you feel good, you are good. Testing is very important when we are trying to improve things. But before tests patients and their doctors went by symptoms, which is what you are doing so you are fine.
Thanx Fancypants. 😊 I do take note of blood tests too but in balance with signs/symptoms. On here sometimes I feel this is lost.....maybe thats me misinterpreting. I do have other conditions but guess am lucky that their symptoms are in the main different though they can sometimes overlap. Xx
Why 15hrs & has there been research to this different timings? My endo & other thyroid docs always told me 24hrs.
It's not 15 hours for NDT and T3, it's 8-12 hours.
24 hours is for Levo, it has a long half life of about 7 days.
T3 has a much shorter half life of about 24 hours.
Both T4 andT3 peak in the blood somewhere around 2-4 hours after ingestion, then gradually lowers, so taking any thyroid hormone before a blood test means that the result will show the peak level rather than the normal level
As NDT contains T3, leaving 24 hours since last dose means that there will only be 50% T3 left, so testing 24 hours after last dose is testing when the T3 is at it's very lowest. Best to test about half way through doses which is about 12 hours.
Endos/doctors prescribing NDT and T3 really ought to be knowledgeable enough to be able to understand blood tests are different from when taking Levo only. It is important to know where T3 level lies as this is the most important test always and when taking a T3 containing medication it's obvious that it should be tested. If they don't understand this I really don't think they should be prescribing it and playing with their patients health.
Wow....thats a bit unnecessary Seaside Susie. I was discharged by my endo several years ago as am stable & have been for years so he didn't feel it was necessary to keep me on. My GP is left to monitor me annually which she is obliged to do but as am sure you know GPs can't request ft3 tests anymore.....well they can but the labs won't do them! So its means my ft3 doesn't get measured. Not endos fault as am discharged or GPs for that matter....so am afraid the blame goes on cost cutting measures by the hierarchy in the NHS! And as for getting them to take a ft3 after 12hrs followed by ft4 & TSH at 24hrs just not possible even under an nhs endos care its not their practise. I wouldn't even dare ask my GP that one. It would mean Id need Ft3 blood test at 8pm followed by ft4 & TSH at 8am. Problem being the hospital phlebotomology dept closes at 6pm as does the GP surgery so how would it get done even if they were willing? My endo & two other thyroid specialist never did this....nor did they drop the ft3 level down to allow for it being higher due to being tested earlier. I was told by all three of them that the ft3 is notorious for fluctuating so they didnt feel it was entirely reliable. Ft4 changes far more slowly. So unless ft3 was over range or very low they did not take a great deal of notice - small changes in ft3 levels were not reliable because T3 fluctuates in the body normally. These were three competent old school doctors who knew their stuff. Sadly all retired now. ..
They also told me that its only when the ft3 is consistently over range it can do harm but would always recommend to keep in range to be safe. I miss them. They were excellant & actually looked at signs & symptoms too and didn't just rely on blood tests. The first one knew the minute I walked through his door that I was hypothyroid. I had the classic features. Before blood tests thats how they treated people. And frankly I think people got much more effective treatment back then.
I believe Paul Robinson & his Gp had simular problems if they went by his FT3 level and dosed accordingly he was constantly changing his meds as the level would fluctuate so much.
I just feel there is too much reliance on blood test numbers and doctors don't even know what they mean....they just see in range or its a tiny bit over/under so all is fine. Such tosh....but the price of "progress" apparrantly....& the reason why so many people are not treated or under treated. Alongside the need to reduce costs by the NHS which is false economy as people end up on statins, blood pressure tablets, pain killers, water retention tablets, anti depressants, eye drops and so.....all because of no treatment or undertreatment or refusal of the best treatment for that patient because its not deemed necessary or their bloods are "in range. "
I do hope one day they wake up to the scandel & the harm they cause....but doubt it will be in my lifetime.
And as for getting them to take a ft3 after 12hrs followed by ft4 & TSH at 24hrs just not possible even under an nhs endos care its not their practise.
No, that's not necessary. You have to do TSH, FT4 and FT3 all from the same blood draw. Always advised here when people ask about thyroid tests, and mentioned probably on almost a daily basis:
"* Blood draw no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If looking for a diagnosis of hypothyroidism, an increase in dose of Levo or to avoid a reduction then we need the highest possible TSH
* Nothing to eat or drink except water before the blood draw. This is because eating can lower TSH and coffee can affect TSH.
* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.
* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).
These are patient to patient tips which we don't discuss with phlebotomists or doctors."
TSH doesn't come into it really when on NDT or T3 because it tends to lower and possibly suppress TSH so it's not really relevant but it's part of the standard test.
as am sure you know GPs can't request ft3 tests anymore.....well they can but the labs won't do them! So its means my ft3 doesn't get measured. Not endos fault as am discharged or GPs for that matter
My FT3 gets tested every time my GP does a thyroid test and it's not requested. Not because I'm on T3 because my GP doesn't know that, but because my TSH is suppressed. I'm in Wales and my health board apparently does do FT3 if TSH is suppressed.
If a patient is on NDT then the endo should know that it's important to test FT3 so somewhere it should be noted that it needs to be tested and chased up if it's not. This is a failing that really needs looking into.
Am really glad you can get a Ft3 from your GP in Wales Seaside Susie. Thats brill! You are very lucky. I'm in England in Yorkshire & no they don't do them even with a suppressed TSH (mine is suppressed too) & havent done a ft3 for a few years (they used to) ......my GP has tried...spoke to lab and took further advice. Only for Endos or if hyperthyroidism is suspected......she can't keep putting that though...as they've already tested me & found out I dont have that. 😊 Am going to go with what my specialists advised Suzie. I know my results and the pattern they have formed over the years so can spot a change more easily doing it this way. I cant find any research documentation that says ndt must be tested the way you described & you haven't sent me any research links.... Ive looked in my thyroid books & It says 24hrs fast before testing which is what the specialists told me & that's the way I've been doing it for a decade & it works for me. Each to their own & obviously it works well for you and others so that's good.
The main thing is the positive outcome we achieve which is we are optimally treated & feel well. Take care. X
Keep an eye on your bloods, but use how you feel as the primary consideration.
Current NHS Guidelines (note the word guide not diktat) is to aim for a full replacement dose using calculator One. 6 µg per kilogram of body weight. Mine calculated out at 142 so I ain’t 150 µg which I am now on and feel okay. Everyone is different. You can tweak down, if you are very concerned, by smaller doses than 25 µg by splitting 25 µg pills to 12.5 µg. Make sure you get the same brand every time for consistency. One that suits you.😊👍
1.6 x 69 = 110Suggests not over medicated. But it’s a guide 😊👍
How are your vitamins etc? They need to be optimal (not just in range) to ensure your metabolism is working the best it can and then you get the best out if you medication. It all interconnected. 😊👍 SeasideSuzie and SlowDragon have lots if useful info on this .
Sorry, I forgot to reply. My vitamins are fine so no worries there.I have decided to leave well alone and stick at the 100 levo as I feel fine on that dose.
It may be that because I am bothered over unrelated stress lately, that it has made me supersensitive to everything else that’s going on with my body.
Personally I feel that wavylines could have started her own thread instead of hijacking mine. I’m getting email reply notifications that are not to my own question. It is a tad annoying. Sorry.
Yes probably best to just monitor and try to resolve, or find coping strategies for the external stressors. Everything is so interconnected isn’t it? I have found this especially so since I became hypothyroid things were affecting me a lot more prior to diagnosis and it finally clicked into place when I had my diagnosis - everything made sense.
I used to be very dynamic, but this has made me more measured. I used to constantly overcommit myself, but was able to put myself into overdrive and deliver.
Not anymore, I definitely can’t overcommit anymore. I have to plan everything a little bit more now and not be so hard on myself if I don’t achieve everything in a single day.
I’m very lucky though, my husband is very understanding and is in large part a reason why I was able to pull myself round when I was severely hypo and undermedicated.
I have to have a back tooth out tomorrow…help! I have been trying to hang onto it for so long now but pieces keep breaking off. It all started earlier last year when I bit something hard and cracked it.I now have to throw my hat in first and then tell the dentist he was right. I will be so glad when it is Thursday. 🙁 I’m glad you are feeling better than you had been. x
Ellie Louise I’m feeling good I hope the same for you now and guess what? I too had an extraction, (back tooth) and during first lockdown. 😂👍
The little chap who did it wasn’t my usual dentist but he was brilliant, although at one stage I did think he might have to put his knee on my chest to pull it out 😂. I call it my lockdown legacy LOL!
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